tag:blogger.com,1999:blog-65441875414886519452024-03-13T22:47:54.107-04:00Where Lilli BloomsA plain old mommy raising a child with autism and cerebral palsy...sharing my struggles, searching for hope, living for miracles one day at a time.Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.comBlogger118125tag:blogger.com,1999:blog-6544187541488651945.post-6117438877563830052019-03-11T10:09:00.001-04:002019-03-13T10:21:21.014-04:00Why I Sing<div dir="ltr" style="text-align: left;" trbidi="on">
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Dear Friends, I wrote this two summers ago. I think about it all the time: the reason "<i>Why I Sing." </i>Yesterday I sang in church with the worship team, and I thought about it again afterwards. People will sometimes say things like, "I enjoyed your singing." But that's not why I sing. I don't sing because of the people in the room and what they think of me. Not at all.</div>
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I have kept this post to myself for far too long, and in recent days I have been pressed yet again to share it. The reason why I sing. So even though it is difficult to put the details of our lives out there, I am sharing it. Thank you for reading.<br />
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</h3>
<h3>
June 2017 </h3>
<br />
<b>Monday.</b><br />
<br />
<i><br />I am.</i><br />
<br />
I am standing at the sink, washing dishes. Thinking about Lilli. Singing a song to myself. <a href="https://www.youtube.com/watch?v=cH_LLGiE0f0" target="_blank"><span style="color: purple;">“I Am” by David Crowder.</span></a><br />
<i><br /> I am <br />holding onto you<br />I am <br />holding onto you<br />In the middle of the storm<br />I am holding on<br />I am.</i><br />
<br />
<br />
<br />
We sang it in church yesterday morning. My mouth sang the words, but my soul cried them out. <br />
<br />
Have you ever been caught in a terrible storm? I remember as a young child, when a big hurricane was headed our way. My parents both ran around outside and secured things. We knew the storm was coming, and I remember the black, ominous clouds rolling and the sky darkening, and the wind picking up. We all go through stormy times. When we are in the middle of the storm, we can lose our bearings. The wind of troubles whips around us and blows us to and fro. It is dark. We cannot see. The sun is always there, behind the clouds. The sun always rises, every day. But most times, in the midst of a terrible storm, we cannot see the sun at all.<br />
<br />
In the storm, everything else fades. All the good, delightful, fun things in life, all the sweet, soft, dear things fade away. And we are in survival mode. We have to grab onto something or someone to hold onto so we are not swept away with the wind and rain. You don't always know what you are going to hold onto ahead of time.<br />
<br />
You realize <i>in </i>the middle of the storm.<br />
<br />
In the darkest storm, in the hurricane, you realize what you can hold onto. <br />
<br />
I sing the song softly to myself at the kitchen sink as I wash. My mind drifts to the scene of last night…..Sunday night.<br />
<br />
Lilli having a seizure. All the lights off...<br />
<br />
<br />
<b>Sunday Night</b><br />
<br />
…. I am laying in bed in the dark, thinking. Trying to calm my mind and heart. Physically exhausted but mentally wide awake from to-do lists running through my head. Trying to keep my head above water.<br />
<br />
I sense my husband sitting up quickly and checking on Lilli for a second. Waiting. Listening.<br />
<br />
This happens all the time. I wait, like a statue. Not breathing. If the light stays off and he lays back down, I can breathe. If the light goes on, we are in trouble.<br />
<br />
<div>
The lamp on his side of the bed comes on and light floods the room. Like a fire drill going off, I know what to do.<br />
<br />
Words get in the way in situations like this. They take too much time.<br />
<br />
I bolt out of bed while shoving my glasses on my face. My husband opens the plastic Diastat pack. Even the plastic is too slow for us in these precious seconds. <br />
<br />
Some people who have seizures are told to wait before giving the Diastat. Because most people’s seizures last only a minute or two, and they end on their own. A neurologist told us years ago that Lilli’s types of seizures are not guaranteed to stop. And they can get going and last for a long time, causing more damage. So we were told not to wait, to immediately give her the powerful medicine that will hopefully stop the seizure.<br />
<br />
But it does not always work.<br />
<br />
When Lilli was a toddler, many of her seizures lasted for the 911 call and the waiting for them to arrive, and the entire 20 minute ride to the hospital. 45 minute seizures, we remember many times. Those were the ones when she had lasting damage and forgot how to eat and walk. After one seizure she regressed and literally ate pureed baby food for four years until she slowly relearned how to chew and eat real food. For several years, her seizures were 3-5 minutes long. But seizures are always changing, and for the last few years, most of Lilli’s seizures have been 8-10 minutes long, or longer.<br />
<br />
All of these experiences have accumulated a large amount of stress and trauma over the years. <br />
<br />
Frightened, we unwind the oxygen tube and get the mask ready to help her. She makes strangled desperate gasping sounds while convulsing. The pulseoximeter numbers are low and alarming to us.<br />
<br />
This is not good. Not good at all.<br />
<br />
I glance at the clock to note the time. Minutes have passed but mere seconds stretch out in slow motion, even though everything is happening so fast. During a seizure, time is warped and does not make sense.<br />
<br />
I am a calm sort of panic. We both know that the seizure should have stopped by now, and it seems like it is only getting worse. Why. Why isn’t this seizure stopping. It should be stopping by now. The minutes march on, and the panic rises up from within.<br />
<br />
“Get another Diastat!” is the next thing my husband says in controlled alarm. We know how to stay calm but we are freaking out inside. There is “long” as in, this is torturous and heartbreaking and feels never ending. And then there is “too long” as in, she might die: call 911.<br />
<br />
This is too long. <br />
<br />
I am flying out of the bedroom and running down the hall in bare feet to the kitchen, grabbing another box with a Diastat from the basket on top of the fridge. I pray a kind of prayer that you only pray in times like this. I can’t even really make more words come out. It’s just His name. But I know that I only need to say His name. He doesn’t need a lot of words.<br />
<br />
I run back into the bedroom. Our toddler, Nate, is awake and confused. I can't take him out of the room, there's no time. He comes to Lilli on the bed and looks at her, not understanding. He is mute, taking it all in. The pulseox keeps beeping. It does not like her low O2 and yells at us. The O2 is gushing through the mask. Lilli is still making sounds of desperation.<br />
<br />
I hope Chloe and Josh don’t hear and wake up and come in here too. I don’t want them to see this.<br />
<br />
Now we have reached the 911 call point. “Should I call? It’s been too long. I think we should call!” I say. “I’m calling.”<br />
<br />
“Ok call,” my husband responds while working on Lilli with the second Diastat. We are both scared. But there are no tears. No screaming or yelling or crying. This is because we have done this for 13 years. But it never gets easier. It ever feels “normal.” I never feel like, “Oh, I can handle this, we’ve done this dozens of times for years.” No. It is always a life or death situation. People die from seizures. It wears a part of me away that I cannot explain.<br />
<br />
As I dial 911 I have a slow motion feeling creep in that I have had in times before like this. <br />
<br />
What if this is it?<br />
<br />
What if this is THE seizure that takes Lilli from us?<br />
<br />
This could be the one. <br />
<br />
Don’t let it be the one.<br />
<br />
Don’t let it be the one.<br />
<br />
I rarely let myself think this awful secret thought.<br />
<br />
Any seizure could be “the one.” I know more than one set of parents who have lost their children to a seizure.<br />
<br />
<i>I don’t want it. I don’t want this. I</i> push the thought away because it is like the earth beneath us crumbling away into a sinkhole.<br />
<br />
When you dial 911, you expect someone to answer. The voice always comes up on the other end. But still, you wait in agony during those brief seconds until you hear that blessed voice.<br />
<br />
“911 what’s your emergency?” <br />
<br />
Thank God that there is a real person on the other end of this line, calm, controlled, ready to send help. I never take that for granted. <br />
<br />
The seizure has finally stopped, but Lilli is now loaded with powerful medication that could cause respiratory problems. My husband scoops 85 pound limp Lilli up in his strong arms and carries her out to the couch. I follow behind carrying the pulseox and wheeling the O2 tank. Nate pads down the hall after us, curious and unaffected. Josh and Chloe are still in their beds. They missed this one, thankfully.<br />
<br />
I will not tell them.<br />
<br />
We will wait for the ambulance. For the helpers, who will come in and check Lilli.<br />
<br />
Red lights are flashing out in front of the house. I am wearing my pjs and I don’t care. I run outside and wave my arms so they know this is the house with the emergency.<br />
<br />
The EMTs come in while my dog barks ferociously. They are serious, pleasant, and purposefully calm. <br />
<br />
They examine Lilli while she lays limp, unconscious in my husband’s arms. They ask questions. Nate wanders around and picks up toys, playing like we are all just having a little party here at midnight, with some nice visitors who just decided to stop by. This weird life is normal to him.<br />
<br />
They stay for a while. Lilli is OK. She scared us to death, but she will be OK.<br />
<br />
She does not need to go to the hospital. We have been down that road many times in years past. She is finally stable. We already have a neurologist and medication and a plan. Nothing else can be done for us. <br />
<br />
They leave. My husband carries her down the hall. Her long teenager legs dangling. She is still out of it. I pray that she does not remember any of this. We shut all the lights off and put Lilli in bed with us.<br />
<br />
I can't sleep. <br />
<br />
I sit up and stare at the red pulseox numbers for awhile, watching them for fluctuation. Praying. Trying to calm my heart. This anxious heart, drowning in a stormy sea.<br />
<br />
<i>So I will call upon Your name<br />And keep my eyes above the waves<br />When oceans rise, my soul will rest in Your embrace<br />For I am Yours and You are mine</i><br />
<br />
(“Oceans” - Hillsong United)<br />
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The Day After - Monday Morning</h3>
<br />
Lilli is sick. She is nauseous. She cannot tell me how she feels, but I just know. She will not eat or drink. She vomits all day. From the seizure, or from the meds? Or both? This is always the million dollar question. She is always like this the day after. She can barely walk, bumping into walls and stumbling over everything like a drunk person. Every twenty minutes, she coughs and I sprint to her with a bowl and hold it under her mouth while she vomits. She has trouble with this. She is like a toddler who does not know what to do, how to bend over so you don’t get it all over yourself. It’s like she doesn’t even know how to vomit when it comes. She doesn’t understand her own body most of the time. I push her head down into a lower position so it comes out and she doesn’t choke on it. <br />
<br />
I spend the entire day tending to her and cleaning up after her, every 20 minutes.<br />
<br />
I wash a million things, cleaning up all day long from this onslaught of craziness that a seizure brings. I stand at the sink and try to gather my thoughts and make life seem organized and simple again. But I cannot. I can only surrender and pray.<br />
<br />
I am emotionally drowning at the sink while washing pots that my daughter has thrown up into. I am lost at sea in all of this.<br />
<br />
I need an anchor in this storm.<br />
<br />
I could choose bitterness, or I could choose grace. I choose grace. I cling to the grace that has been given to me, even when I didn't deserve it at all. It doesn't mean that I don't struggle with how hard this all is. It is <i>so, </i>so very<i> </i>hard sometimes. But in the waves, I do not look down. I look <i>up</i>.<br />
<br />
A song floats to me. It comes to me because I have sung it recently, when the sun was shining and everything was good and there was no hint of a storm on the horizon. I begin to sing softly to myself. <br />
<i><br /> I am <br />holding onto you<br />I am <br />holding onto you<br />In the middle of the storm<br />I am holding on<br />I am.</i><br />
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Tuesday Morning</h3>
<br />
I am drinking coffee with my husband. <br />
<br />
It has been tough. We are worn out. but hopeful that she will be better today. <br />
<br />
I look at my husband and ask him. “When Lilli was having that seizure the other night, I was thinking, <i>this could be the one.</i> Do you ever think that?”<br />
<br />
“All the time.” He said immediately. <br />
<br />
“Every time.” <br />
<br />
We sit in silence, thinking about that. <br />
<br />
He leaves for work. I have the words to the song in my head all day again. My heart clings to these words. I have nothing else to cling to. When the storms come, and the earth begins to crumble away and we are sliding, this is what I have. This hope, this faith in my God who is bigger than all of this. This God who created us and knows all of these details. This God who spoke stars into existence. So many stars that we cannot even count them all. This God who is working all things together and weaving all of the details of our lives together in a massive, mysterious, beautiful tapestry. That He is holding onto us, and we are holding onto him. <br />
<br />
I am holding on. <br />
<br />
<i> I am <br />holding onto you<br />I am <br />holding onto you<br />In the middle of the storm<br />I am holding on, </i><i>I am.</i><br />
<br />
When I spend time with Him, really spend time, I know Him more. When a storm comes, I know that He is there with me in the middle of the storm. When others ask, “Where is God?” I know that He is right there, in the middle of the storm. And I am holding onto Him. He gives a peace that cannot be explained.<br />
<br />
If you put His words in your heart when life is calm, the words will come to you when you are drowning in stormy seas. And if you sing praises to Him when things are good, a song will be on your lips when the earth is crumbling beneath you, and you have nothing to hold onto except for your faith in Him.<br />
<br />
<i>Your love is devoted like a ring of solid gold<br />Like a vow that is tested like a covenant of old<br />Your love is enduring through the winter rain<br />And beyond the horizon with mercy for today<br />Faithful You have been and faithful you will be</i></div>
<div>
<i>You pledge yourself to me and it's why I sing<br />Your praise will ever be on my lips, ever be on my lips</i><br />
<a href="https://www.youtube.com/watch?v=BhasSpSBdEE" target="_blank"><span style="color: purple;">(Ever Be - by Kalley Heiligenthal)</span></a><br />
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<br />
Indeed, God is faithful. We are not promised a perfect, happy life. Every single one of us on earth has trials, hardships, and heartbreak.<br />
<br />
But God is faithful. <br />
<br />
Faithful He has been to me. And faithful He has promised to always be. This I cannot simply explain in a few sentences. But He is good, and He is faithful. <br />
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And it's why I sing. <br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-86901713816022830732017-05-14T09:25:00.000-04:002017-05-14T09:28:00.269-04:00Celebrating Mothering Day<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I was not going to post on Mother’s Day. I was going to try and stay off social media today and enjoy my children. But my reality this morning was not breakfast in bed or pampering. It was not waking up with the sunrise to chirping birds and coffee. My husband is out of town. My toddler had his elbows and knees in my back half the night, and Lilli woke me up way before dawn as usual, pulling on me with a dozen requests. The thing about having kids on Mother's Day is, well, little kids, or kids with special needs, still need their mothers to do a million things. So I woke up grouchy. And my attitude stunk. </span></div>
<b id="docs-internal-guid-d27accc5-06fd-454f-a7ec-15f1edc7b829" style="font-weight: normal;"><br /></b>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But it’s Mother’s Day. </span></div>
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<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So I have been up thinking for hours about today, and what it means to celebrate today. And who “gets” to celebrate it. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My heart is tender for you who are sad on Mother’s day. For you who do not have your mother to celebrate with today, like myself. And for you who have a physical birth mother, but maybe she has not been a part of your life, or she has hurt you deeply or abandoned you. I think of you who desperately long to be a mother and have waited for years with much hopefulness and despair. And I think of you who have given birth or adopted children, but motherhood has not turned out at all to be the way you thought it would be. And it's been very hard, and heartbreaking for you.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">For you, who are sad today, these words are for you. </span></div>
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<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Mother’s Day is not about mothers.</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Mother's Day is about </span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>mothering.</i></span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Maybe it is because I do not have my mom to celebrate with, but Mother's Day has come to mean much more to me than thinking about my own mother or my own children. When I lost my mother at the age of 13, I looked to many other women to "mother" me over the course of my life. A woman always needs someone to mother her, all throughout her entire life. When your mother is gone or absent from your life, others step in. I have been loved and mothered by so many women over the years. By my sister, my sisters in law, my mother in law, the moms of my friends, by teachers, by my own good longtime girlfriends, by women from church, by sweet women neighbors over the years wherever I have lived, by women I worked with (especially when I was a new young teacher). Even by complete strangers when I was in a time of need. So many wonderful, thoughtful women God has always put into my life to help me, guide me, love me. </span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I think of them all today. I think of moments over the years when I desperately needed a mother, and one of these women in my life stepped in and mothered me, for that moment. </span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I am thankful for all of them.</span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Many of those women are you, who are reading this right now. Or if you are my girlfriend, maybe your very own mom mothered me when I was young by welcoming me into your childhood home, feeding me, giving me rides, giving advice, cheering me on at some school function, praying for me, and just… well, being a mother. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I hope that over the course of my life, I will be able to mother others in this way, besides my own dear children. And I know because of my own experience, that I am not the only person who mothers my own children. There are many others in our lives who have mothered my children, and we need these women in our lives too. I celebrate them. Because Mother’s Day really is not just about moms. It is about anyone who </span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">mothers</span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. It is about women who foster, adopt, or help anyone by “mothering” them in some way. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There is no “rule” that says you can only celebrate Mother’s Day if you have given birth or your mother is still alive and coming over for brunch today. It will make you sad if you think all those Mother's Day cards at the store are just for "real moms." Whatever that means. I used to think that. I don't anymore. </span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So I wish you a Happy Mother’s Day, all you who have mothered someone in some way. It is a gift to mother someone, and it is a gift to be mothered by someone. This is why we celebrate. Because we are thankful for the gift of mothering. If you have ever mothered someone, or been mothered, celebrate today. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Celebrate </span><span style="font-family: "arial"; font-size: 11pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">all </span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">those who mother, on mother’s day. It really should be called "Mothering Day."</span><br />
<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"><br /></span>
<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">If you have sadness in your heart today, make a list of women who have mothered you over the course of your life, and celebrate those women. I'll bet the list will be longer than you think. Think of the women who have been there for you in your times of greatest need. And think of those who you have mothered or are currently mothering in perhaps even the smallest of ways. You are more important to that person than you will ever realize.</span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Today is not about who you are not. It is not about who you don't have. It is about who you are. It is about who you do have. </span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">So Happy Mothering Day to all of you. And if you are one of those special women who touched my life over the years, thank you... and with much love, I wish a special, Happy Mothering Day to you.</span><br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-25813198781998260472017-04-30T22:20:00.001-04:002017-04-30T22:20:40.293-04:00Attempting RV Camping - Part 4: Realizations, Meeting Another Lilli, and Coming Home<div dir="ltr" style="text-align: left;" trbidi="on">
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More Gifts Than We Realize</h3>
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After the sun rises over the ocean and we've walked along the beach for awhile, talking and holding hands, Chloe and I head back to the campsite.<br />
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We sit at our picnic table to enjoy coffee and hot chocolate together. As we sip and chat, a friendly, grandfatherly man walks by with a little girl. He stops and waves to us with a smile. </div>
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"I see you have the best campsite for wifi in the whole campground!" He tells me.</div>
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"What? Really? It's not that great, but it's ok," I say with confusion.</div>
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"Oh, but your campsite is the closest one in the whole campground. See, the wifi is on top of the bathrooms." He points. "Before you arrived, everyone was sitting at your picnic table here trying to get online."</div>
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I didn't know. I thought everyone had the spotty wifi. He tells me that most of the sites don't even get the wifi at all.</div>
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Isn't that just life? We never truly know how good we have it until someone else tells us.<br />
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The man smiles and goes on his way with the little girl. I turn to Chloe and say, "See Chloe? God always works out the details. Here I spent so much time worrying about Lilli and the wifi and her being happy here. God picked the campsite with the best wifi for us and we didn't even know it."</div>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-XxK66s3HO2w/WP_HSi6xREI/AAAAAAAABRU/-PQrIl9aYKgDaKt2LTSe8mx_gobzspdUgCLcB/s1600/IMG_1792.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-XxK66s3HO2w/WP_HSi6xREI/AAAAAAAABRU/-PQrIl9aYKgDaKt2LTSe8mx_gobzspdUgCLcB/s320/IMG_1792.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">Our camper. Next to the bathroom with the wifi, that white thing up on the roof. Can't get much closer.</td></tr>
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And He really did. He saved that spot just for us, because the way we even got that campsite was just silly.</div>
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We did the whole trip planning backwards. The <i>dumb, I don't know what I'm doing</i> way. First, I rented the RV for the dates we knew we would do this little adventure. But then I tried to figure out where we would go with the RV. I asked around, did a little searching. I thought we would go to this little campground near the beach. I looked on the website in early March to make a reservation, and it said that they only took reservations until the middle of April. Right before our April dates.</div>
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<i>Hmm, that's weird, ok, I'll just check back in a few weeks, </i>I thought. And then I just put it to the side and kind of forgot, because we had a bunch of other stuff going on.</div>
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A nurse supervisor came out for her monthly visit to make sure things were going ok with Lilli's care, and during the course of conversation I told her we were going camping in an rv, but I didn't know where we were going yet. I told her about the one place I had been thinking of.</div>
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"OH I LOVE it there!" She exclaimed. "I have friends who go there every year, and they have to make their reservation over a year in advance so they can get a spot."</div>
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<i>Really? A year? I think I messed up here somewhere, </i>I thought to myself.</div>
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After she left, I went back to the website. </div>
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<i>Oh.</i> </div>
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I didn't see the year part. 2018. They don't take reservations past April 2018 of <i>next year. </i><br />
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Quickly I scanned the dates we were planning to camp (in 2017) and I was immediately dismayed. Completely booked. I'm such a dummy. <i>Duh, who rents an rv and tries to get a good spot at the beach in a few weeks. </i>I did not know about this year in advance thing. Oh wait! Except for one site. One single site was unreserved.</div>
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The handicap site. Can't reserve it online.</div>
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Could we get that? I picked up my cell phone to call. Surely we could. After all, Lilli has a disability and she is a part of our family. Maybe having a handicap site would make things a little bit easier. I hadn't even thought of that. I didn't know there were handicap sites.</div>
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I called and asked if we could reserve it. I explained about Lilli. Yes, as long as we have a valid handicap placard, and someone has a disability, I could reserve it. I asked what the difference was, and the difference was that the site is paved. Perfect. Lilli gets really anxious and has trouble navigating uneven ground, especially gravel.</div>
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That was the only difference that she mentioned. She didn't tell me that it was close to the beach, that it was next to the bathrooms, that it was the best site for wifi. We didn't even know. That was a gift.</div>
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I guess some people could say we got lucky. I don't believe in luck, though. But I do believe in a God who cares about his children, even the small details of their lives. Heck, if he knows how many hairs I have on my head, he knows that I screwed up when I rented a 30 foot RV with nowhere to go, and that I needed Lilli to have wifi to not have so many meltdowns so we could enjoy a trip together as a family.<br />
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That one single campsite next to the wifi was saved right there for us for those two days.<br />
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And because I didn't realize how great it really was that all that had been worked out for us, I totally believe that God had that guy walk by and tell me. It all makes me laugh. I just love God's sense of humor. He created humor, after all. And goodness, he's GOD. So he has the best sense of humor of all. It's very funny to me that this man would walk by and randomly <i>tell me</i> that we happened to have the best wifi connection in the whole place. Otherwise I wouldn't have known. That man will never know that his friendly comment was not random at all to me. He didn't know the hours I spent worrying about wifi, and that there was a girl with autism in the back of the rv on Youtube at that very moment, NOT melting down because God gave us the closest campsite to the wifi.<br />
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I wish I could find that stranger and tell him <i>thank you for helping me to see that gift.</i><br />
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At the campsite picnic table, I open up my Bible and read to Chloe. </div>
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<i>Your love, O Lord, reaches to the heavens, </i></div>
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<i>your faithfulness to the skies.</i></div>
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<i>Your righteousness is like the mighty mountains,</i></div>
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<i>your justice like the great deep.</i></div>
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<i>....For with you is the fountain of life; </i></div>
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<i>in your light we see light.</i></div>
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We talk for a bit about what that might mean. In your light we see light.<br />
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Maybe it means that when you believe in a great God, and you're looking for Him, you see the things he does. I'm really not sure. But I do know that without his light, we are lost without him. Like being in darkness, when we don't depend on him. Sometimes when you are in the dark, you think you can still see. You think you can still figure things out on your own. I know that if we had arrived at the campground in the light, we would've found it easily. We wouldn't have driven into the authorized vehicles only area. We were very close, but we just couldn't see in the darkness. Light changes everything.<br />
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My husband gets up and comes out with a cup of coffee. There's nothing like enjoying a cup of coffee at a chilly morning campsite at the beach. Not too chilly. Just enough to put on a sweatshirt and enjoy a hot cup while the sun warms up the world and the dew fades away. We speak in quiet voices. Chloe is delighted to be the only kid with our current attention. Lilli is happy in the back room of the rv with her movies. The boys are sleeping. I tell my husband about the man who told us how great our campsite was for wifi. We marvel over how it worked out.<br />
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A Girl Like Lilli</h3>
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A little while later, we are getting ready for the beach. We leave tonight. Have to get to the beach one last time. I am inside the rv helping Lilli. I've just lowered her to sit onto the potty and I'm packing a beach bag when I hear my husband yell out, "Hey I really like your bike! My daughter has one like that!"</div>
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People rode their bikes past our campsite all day on the paved loop around the campground. I don't pay too much attention as I hear him ask her name and where they are from. I thought my husband was talking about our daughter Chloe. Then I hear a woman's voice say, "She is my niece. She has <i>cerebral palsy, autism, and seizures</i>."</div>
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I drop what is in my hands and run out of the rv. </div>
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"Hi I have to meet you!" I say as I run up. I could not believe it. Another little girl in the world who is like our Lilli. She has cp, autism, and a seizure disorder. How crazy. She is sitting on a special needs tricycle, just like the one Lilli has. And oh she is so precious.<br />
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The aunt says ," I want you to meet her mom, my sister. You two should meet and connect. She's had a really tough time. It's been so hard."</div>
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She pulls out her cell phone and calls her sister to come meet us. She is back at their campsite, and in a few minutes she walks down to meet us. We connect immediately, because we have such similar challenges with our daughters.</div>
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I run back in to get Lilli. "Come out Lilli, come see! Come meet another girl who is just like you!" I say to her with something like excitement as I quickly help her get off the potty and get dressed. It's like excitement, but it's not. It is some other feeling that maybe doesn't have a name. It's...the feeling you have when your very different, unique, disabled daughter is about to meet another girl in the world just like her for the very first time in her life. So I don't know how to describe that feeling.<br />
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I help her down the steps and over the campsite to the little girl on the special needs tricycle. The girl gets off the tricycle, and Lilli touches her face and smiles. Then she grabs her and gives her a big hug. They both smile. I want to bawl.<br />
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This moment of seeing two blond girls, both with cp, autism, and a seizure disorder, hugging each other with big smiles in the middle of a campground, I can hardly keep the tears back.</div>
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But the next part is almost unbelievable. </div>
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We discover that we live about 20-25 minutes from each other. She lives in the next town over. She's right down the road from us.</div>
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How do things like this happen in life? We had to drive over five hours to a place we've never been, to camp for the first time ever as a family, to meet a little girl on a bike in a campground who lives 25 minutes away from our home. And she has the same diagnosis as Lilli. Heck, I could've met her in a grocery store or somewhere in the past two years. But I didn't. We met in another state, in a campground when she rode her special needs trike past our campsite while my husband was outside and happened to see her.</div>
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"Who is her neurologist?" I ask the mom. Even though I already know the answer. She goes to the same one Lilli sees.</div>
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I have never, ever met another girl who has the same diagnosis as Lilli. </div>
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We talk for a long time and exchange information. But then we part ways so we can get ready for the beach. What are the chances? </div>
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Except I don't believe in "chance."</div>
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<h3 style="text-align: left;">
The Ride Home</h3>
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We pull out of the campground and drive back to my in laws' house around dinnertime. I make Lilli a sandwich and sit next to her and feed her while my husband drives. My kids eat dry cereal for dinner (fun sugary cereal out of the box! They never get to eat like this) and snack on stuff we pull out of the boxes of food we brought. We pull into my in laws' cul de sac at 10:45, and get everyone ready for bed. We are going to camp out in the cul de sac for our last night before we have to return the RV to the rental place in the morning.</div>
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The next morning, I wake up first. I sneak into the house and make myself a cup of coffee. I'm ready to unload and clean the RV from top to bottom. It will take a couple hours. I step outside with my coffee and see the sun peeking over the roof of the RV. My last sunrise of this trip. It makes me smile. We thought we were going to have a rainy trip.<br />
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The weather forecasts were all dead wrong.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="font-size: 12.8px;">Sunrise over the RV. I am so glad we went.</td></tr>
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I am so grateful for the gift of this trip.<br />
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We did it.</div>
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We took the chance and tried an adventure. It did not cost that much. The RV was $100 per night, and the campground was $62 per night. We never used the propane because I cooked everything ahead. We heated everything up in the microwave. Except for the burgers and s'mores that we made over the fire. Also since the hot water heater broke after Nate's shower, we didn't use propane for that, so we don't owe the rv rental place for using propane.</div>
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The gas is the killer. My husband takes the sparkling newly cleaned RV to the gas station to return it. He texts me what he spent filling up the tank. He tells me later that technically he spent a little over $91 because he took this picture, and then put in two more dollars.<br />
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I am getting ready to leave to go meet him and pick him up when I stop by the front door and pick up a piece of mail my mother in law had for me. It came there for some crazy reason, because four years ago, we lived in their house. </div>
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"What's this?" I ask her.</div>
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"Oh, that came for you. I've been meaning to give that to you," my mother in law says.<br />
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I open it up. It's a check for $92.77. I have absolutely no idea where it came from. It is not from my bank. It is not from my health insurance. I just do not even know what it is. But it's to me. And it's for about the same amount that it just cost to put gas in the RV tank a few moments ago. So I guess it's from God. Stuff like that happens all the time, you know. I don't get it. But if I ever completely understood God and how He works, He wouldn't be very amazing. I'm glad I don't understand God. He's mysterious. He's surprising. He's really awesome. And I love his sense of humor.</div>
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I just don't believe in dumb luck, I believe God takes care of us. He gave us a campsite when I botched up the trip planning. He gave us the best wifi in the campground and I didn't even know it. He gave us beautiful weather and a sunrise when all the predictions were for rain and clouds. He paid for our gas. And He introduced us to a really cool family that I know we will see again, and a neighbor from back home who has a child just like Lilli. </div>
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<i>Thanks God, I'm pretty sure you did a whole bunch of other things for us that we didn't even notice.</i></div>
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After the Trip</h3>
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The nurse supervisor comes to the house. Boxes and bags are still on the kitchen floor. We are still unpacking. I haven't seen her since last month, when she told me how the campground was booked a year in advance. I tell her how I called and got the last campsite, a handicap site, and how great the trip was. I show her the picture of the bathroom right next to our campsite and the wifi on top of the bathroom. I show her pictures of Lilli at the beach, eating cheesepuffs at the picnic table, and riding in the bike trailer with my super husband pulling her with Nate in the baby seat. </div>
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She is so happy for us, that we had a great time. But mostly, she is happy that we even went at all.</div>
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"I have so many families that would never do what you just did. Most of the special needs families I work with, they never even leave the house. They won't even take their kids to the grocery store."</div>
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<i>I get that. It's hard.</i></div>
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"But you guys took a trip and it was such a great experience for Lilli to get to go. Most of the families I work with, their kids are HOME BOUND. They never get to go anywhere."</div>
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After she leaves, I think about her words for a long time. </div>
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It <i>is </i>hard. So hard to do things with a child who has multiple disabilities. But even though I was fearful before we left, and anxious on the way, and it wasn't easy getting there, I am <i>so</i> glad we went. </div>
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Because the sun, it always rises. There's always a sunrise somewhere. You have to get out of bed and run to go see it. If you stay in bed, you'll miss it. Yeah, it's easier to stay in bed. Sure, it's easier to stay home. But there's adventure out there. There are surprises to experience, and gifts to find in life. We each have to figure out how to make it work so that we can experience adventure, even if ours looks different than someone else's adventure.</div>
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When you take risks and step out in faith, there are always, <i>always</i> gifts along the way. When you step out of your comfort zone and talk to total strangers, cool things happen.<br />
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<br />Envisioning Versus Actuality</h3>
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Remember my "vision" of what camping as a family would be like? I had a detailed image of what we would all be doing on the trip. Most of my envisioning was wrong. I was right about Lilli and her movies and legos, but not much else.<br />
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A park ranger came by and nicely told us we were not allowed to have a baby pool at the campsite for safety reasons. I had brought it so we could keep him from wandering away. Later Nate <i>did </i>wander away from the campsite while we were distracted getting the bikes ready for a bikeride. Our camping neighbor brought him over to us. I was mortified. But we got him back...I don't think that counts as losing one of our kids, does it?<br />
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Jasen and I barely got to sit at the campfire together at the same time, but that's ok. We still enjoyed it. We never played one board game as a family. I guess we had them in case it rained. We never needed them. Chloe never did lay on her blanket to read a book because she was too busy riding her bike and playing with other kids at the campground. I hadn't thought of that.<br />
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<tr><td class="tr-caption" style="font-size: 12.8px;">Short lived. But it was a good idea, oh well. </td></tr>
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But the RV didn't crash. We didn't permanently lose any of our kids. And we all made it back.<br />
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What I <i>didn't</i> envision were these gifts:</div>
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-Relaxing at the beach. Lilli napping next to me, while I <i>sat in a chair and read a book. (!!)</i></div>
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-Our kids playing in the sand with each other and other kids. Friends to play with on the beach! Nate wasn't interested in cold water, so he played right near me in the sand almost the entire time, and I didn't have to chase him.<br />
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-Being so close to the beach. Jasen and I taking turns walking back to the RV to get food, drinks, and take Lilli to the potty. We could go back and forth from the beach without doing a huge pack-up.</div>
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-A fun family bike ride where we saw neat birds and alligators.<br />
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-Meeting cool people that we will keep in touch with.</div>
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-A random check of $92 to pay for the $91 and change cost of a tank of gas.</div>
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-Laughing hard, doubled over about our crazy first night. <i>Authorized vehicles only.</i><br />
<i><br /></i>And so many other memories we will treasure and laugh about for years.<br />
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What Do the Kids Remember?</h3>
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I ask my husband, one week later: what was your top favorite moment of the trip that makes you think, <i>it was all worth it.</i></div>
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My husband immediately answers, "Two things. Walking with Lilli on the beach. She wanted to walk with me, and she loved it." She did. I took many pictures of the two of them. Sweet daddy's girl. </div>
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"And the other was when we rode our bikes together on that trail," he says.</div>
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I already knew his answer, because when we finished that bike ride, my husband was exhilarated. I was just glad we made it and no one wiped out, including me. I knew that was his favorite moment of the trip.</div>
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Then I ask the kids. What did they remember? What did they love most? Josh's favorites were "the bed, and going to the beach." The bed. He liked sleeping on that bed up above the cab in the RV. Kids are so funny.<br />
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Chloe said, "Everything! Every single thing. Riding in the RV. Running to the beach and seeing the ocean that first day after not seeing it in so long. Playing with other kids and making new friends. Riding my bike around the campground. Going to the gift shop! Everything!"<br />
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<i>Every single thing, </i>she said. Everything? This is a kid. To me, "everything" would include the stressful ride there. The pan handler, the seizure scare, Nate puking, the fighting and the crying, the bike wipeout, the stress, the complaining, the broken glasses.<br />
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She said <i>everything.</i><br />
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Kids. They aren't like adults. They love the things we don't think of. And they lump it all together into one big thing. Chloe also said that the trip was "amazing."<br />
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And this is exactly why we should do it all over again.<br />
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After mulling over her answer for awhile, I think I agree with Chloe. What was my favorite part of the trip? <i>Everything. </i>The whole beautiful mess. All of it. That was our family trip. And that's why it was all my favorite, because we were all together as a family. We were not split up. <i>That</i> was what the whole trip was about.<br />
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Being all together on a camping trip.<br />
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<h3 style="text-align: left;">
Future RV Trip? </h3>
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We now have a new fun dream of saving up to buy a used RV and take as many camping trips as we can before the kids grow up.<br />
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If life wasn't interesting, chaotic, or challenging at times, how boring would all of our stories be? It's hard to do things like this as a family, especially when special needs or difficult circumstances come into the picture. Planning a camping trip for any family takes time and determination and so much effort. But this is where some of the best memories in life are made. Stories you will tell forever. Experiences your kids will never forget.<br />
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Maybe our experience will inspire someone to try something new. So go and plan your own adventures. And enjoy your crazy ride. Remember that pretty much nothing will work out the way you plan, but a lot of it will still probably be good. You'll never know unless you try it.<br />
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It'll be fun to tell all about your adventures when you get back, and your kids will remember the good stuff.<br />
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Just make sure to hide some cookies for yourself somewhere in case you need them.</div>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com2tag:blogger.com,1999:blog-6544187541488651945.post-75348452202424863542017-04-30T07:35:00.002-04:002017-05-01T10:56:31.845-04:00Attempting RV Camping - Part 3: The Sun Always Rises<div dir="ltr" style="text-align: left;" trbidi="on">
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Day 2</h3>
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It is still dark and very early. I wake up to Lilli's happy sounds in the back of the RV. She is laughing and making little fun squeals. I know that this is because she is watching Baby Einstein re-mixes on Youtube. (There is a whole world out there of people - who I think must also be on the autism spectrum - who take Baby Einstein movies and...re-do them. Sped up, slowed down, set to techno music, etc. Highly entertaining to Lilli. Not so entertaining to her parents.)<br />
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We had arranged the sleeping places this way ahead of time on purpose. We knew Lilli would wake up before 5 am, and we would have to figure out how to keep her happy and from waking up the rest of the kids. And also the entire campground. Since the back room has a door, we closed the door and had the iphone charging and ready to go for 5 am to keep her back there and happy for awhile. My husband is super dad. He can get up, take her to the potty, get the phone on her techno Baby Einstein video, and fall alseep next to her with a pillow over his head. I cannot do that. But we all have our different talents.<br />
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<tr><td class="tr-caption" style="text-align: center;">Not the best picture, but the only one I have of the back of the RV. The bathroom door swings out and doubles to become a bedroom door, closing off the back half of the RV. This is a morning moment of Lilli hanging out on the bed back there with legos and a movie.</td></tr>
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Our plan worked.<br />
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I lay there on the pull out bed next to Nate in a mixed state of extreme relief to have finally gotten here, and apprehension about how the rest of the trip is going to go, based on the fiasco of last night. Surely it can only get better from here, right? <i>We are at the beach!</i> The beach is my absolute favorite place. I am partial to Ocean City NJ, but I will take any beach as a second choice. Anytime I am ever at the beach, I wake up before dawn and feel an indescribable pull toward the sunrise over the ocean.<br />
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But today, even though I feel wistfully drawn to it, I cannot get up to watch the sunrise. I am physically worn out. Also, it is cloudy and there might not be a visible sunrise. The weather forecast says clouds and rain all day. I am just going to ignore that for now. I am determined to drink my coffee and read a book. This is vacation, after all. I am going to make it feel like a vacation against all the odds.</div>
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I sneak out of bed and make my coffee, and sit at the little kitchen table with my book, turning pages quietly. Josh and Chloe are sleeping up in the overhead loft. Nate is sacked out on the couch bed across from me. The noisemaker I brought blocks out a little of Lill's noises and the kids all sleep through it. Ok that's glamping. A spa noisemaker plugged in to keep your kids sleeping while camping. I admit it.</div>
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This is good. It's going to be OK. Let's just forget about the trip last night. We are here. I have coffee and a book, and we are at the beach.<br />
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My husband comes out from the back room and silently holds up his glasses so I can see them.<br />
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Broken.<br />
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Lilli had picked up his glasses from the side table, snapped them in half, and tried to put them on his face while he was sleeping. </div>
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"Have a cup of coffee hon. We're on vacation."</div>
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<h3 style="text-align: left;">
The First Bike Ride</h3>
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After quiche and bacon and sugary fun cereal that you eat right out of the box when you're camping, we get ready for our first day at the beach. The kids are crazy from excitement (and the cereal) and slowing my beach-packing pace. While I'm packing towels and bags, I suggest to my husband that maybe he could take the kids for a bike ride to keep them out of the way.<br />
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<tr><td class="tr-caption" style="font-size: 12.8px;">Camping cereal. My husband laughed at me because that first morning I said to the kids, "Do you want bacon, pancakes, or sugary fun cereal that you eat out of the box?" Hmm, tough decision for a kid. "Sugary fun cereal that you eat out of a box!" they yelled. </td></tr>
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He loads our two and a half year old on the baby bike seat on the back, and takes off with Josh and Chloe. Lilli, who didn't have any fun sugary cereal and sticks with her gluten free pancakes, stays behind with me and I get her changed for the beach.<br />
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Josh is our dare devil, so Jasen instructs him to stay behind him, watch for cars and other bikers, and stay on the trails. To confirm, he asks Josh, "You understand?" Adjusting his helmet and clearly thinking of wheelies or Pokemon rather than bike safety, Josh responds "Huh? Oh, yes sir." <br />
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According to Jasen, not five minutes into the ride Josh darts in front of my husband, hitting the edge of a side walk and nearly wrecks, causing a chain reaction. Jasen swerves, hits the brakes and quickly ends up sitting on the handle bars as Nate's chunky momentum swings the back end side to side. Jasen, hopping on one leg as he desperately tries to keep the bike upright, hops in circles for what seemed like minutes until he finally crashes to the ground. He pops up instantly to check on Nate who was in the baby seat that crashed to the ground.<br />
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Nate is fine. Several bystanders are idling at a distance, clearly concerned. Jasen oddly finds himself with his hand in the air giving the beauty pageant wave turning in circles politely nodding his head and smiling, letting the audience know: <i>Nate's fine and you're welcome for the performance.</i> A middle aged man approaches Jasen.<br />
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"You almost had an epic dad-save there..." With a sideways smile while he walks away, and adds, "but not quite." Nate is uninjured, Josh has learned to stay in back, and dad has the best knee hamburger he's had in years.<br />
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Good thing I had packed the big band aids in the first aid kit.<br />
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<h3 style="text-align: left;">
Beach and Movie Soundtracks</h3>
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We head to the beach together. How is this going to go? We are carrying two chairs and that feels like a joke. Will Jasen and I even get to sit down? It is all such a gamble.<br />
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We arrive at the beach with high hopes. The sun comes out and the forecast changes from cloudy to sunny. It's an absolutely perfect beach day. Lilli is content to sit in her stroller, listen to music, and enjoy the sun. We meet a very cool family from Boston and the husband works with adults who have special needs at a special outdoor program. He has met Joni Erickson Tada. I am super jealous. They are sweet about Lilli and our kids play together. Lilli naps in her stroller next to me and Nate plays in the sand.<br />
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It's amazing. I actually get to sit in a chair at the beach and relax for a little bit.<br />
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Lilli does really well at the beach, with only a few minor times of being upset. I cycle through her music, Veggie Tales kindle movies, dvd player, and Sesame Street movies I had downloaded onto the iphone. I have all of the devices hidden down in the back netting of her stroller behind her, and she lays back and listens to them and looks out at the ocean. I guess that's like relaxing paradise for Lilli.<br />
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<tr><td class="tr-caption" style="text-align: center;">Our beach set up. No one near us. Lilli is snoozing under that towel in her stroller.</td></tr>
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After the beach, we all go to shower and discover that something is wrong with the hot water heater on the RV. I call the 1-800 number and get trips for trouble shooting. It never works for the rest of the trip. It's not a big deal though, because we are right next to the very nice campground bathrooms.<br />
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Later we all take a family bike ride on a trail and see an alligator and cool birds. Lilli rides in the bike trailer. My husband has Nate behind him in the baby seat, and pulls Lilli in a bike trailer at the same time. On a trail through the woods. Over pine needles and tree roots. I can't believe we do this, but it goes great. No wipe outs this time.<br />
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We come back after the bike ride and cook burgers over a campfire for dinner, and roast marshmallows and make s'mores.<br />
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It wasn't all how I had envisioned it.<br />
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For all of my envisioning, many things did not go as I had planned. That's life, right? We can make all the detailed plans we want, but life is going to surprise us every time. We stressed about the smoke from the campfire and tried to keep Lilli in the back room with the door and windows shut and an air purifier running. We yell "Shut the door" a few dozen times as the kids come in and out with food. We learn from all of this. It's still good. It's doable. We can do it again but better... the next time we go camping.<br />
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<tr><td class="tr-caption" style="text-align: center;">Josh found a cool spot to eat fun cereal out of a box.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This guy is my hero. Just don't look at his shoes.<br />
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<br />
At the campsite, she is happy with her movies and legos. The wifi is not perfect but it works pretty well. We think this is going pretty great so far. Besides the not so great stuff, it's pretty great.<br />
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<tr><td class="tr-caption" style="font-size: 12.8px;">Lilli chilling at the picnic table after the beach with her DVD player in her lap and a bag of cheesepuffs.</td></tr>
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<h3 style="text-align: left;">
Day 3</h3>
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It's our last day. </div>
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<i><br /></i></div>
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<i>What? You just got there! </i></div>
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<br /></div>
<div>
I know. I cooked so much food so we would not have to cook on the trip. I feel like we need to sit around and eat all day.</div>
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<br /></div>
<div>
Lilli is up again at 5 but happy with Youtube while Jasen again falls back to sleep with a pillow over his head. I get up and check the weather on my phone: cloudy. But I wanted to see the sunrise. I always try to see a sunrise when I get to the beach. It's my thing. </div>
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<br /></div>
<div>
I crawl back in bed next to Nate and lay there for a minute, debating.</div>
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<br /></div>
<div>
I'm going to go. <i>Maybe I'll get lucky and get a glimpse of the sun through the clouds, </i>I think. </div>
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<br /></div>
<div>
I reach up and tap Chloe's leg and she sits up immediately and nods. She knows why I am waking her. This is what we do. We steal out into the chilly morning darkness and run quietly in our flip flops to the beach entrance. <i>We might catch it,</i> I tell her in a hushed voice. The entire campground seems to still be asleep. <i>Hurry!</i> We run and come up the path to the top of the dunes just in time. The horizon has a layer of clouds resting just above the water line. But just then the top ridge of an orange sun peeps over the clouds, and I am thrilled beyond belief to see it.</div>
<div>
<br /></div>
<div>
The husband from the family we met at the beach the day before is standing there at the top of the path, also watching the sunrise. We smile and nod a good morning to each other.</div>
<div>
<br /></div>
<div>
"I didn't think we would get to see a sunrise today because of the clouds," I say to him. "But there it is!"</div>
<div>
<br /></div>
<div>
"Yep, it always comes<i>,"</i> he says. We smile.</div>
<div>
<br /></div>
<div>
"Every morning," I say back as Chloe and I take off running down to the water. </div>
<div>
<br /></div>
<div>
It's that verse. His mercies are new every morning. The sun rises every day, clouds or not. There it is, in full beauty over the sparkling ocean. I feel like crying because I'm so happy, but instead Chloe and I laugh and run along the water's edge and take pictures and pick up shells. </div>
<div>
<br /></div>
<div>
This was a gift I was hoping for. It is priceless beyond measure to me. These moments in the sunrise with my Chloe. I can honestly say that for all the insanity we went through to get here, this moment alone makes it all totally worth it.<br />
<br />
But the trip is not over yet. There are more surprises still to come.<br />
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<h4 style="text-align: left;">
<br />
To be continued in the conclusion: <a href="http://wherelilliblooms.blogspot.com/2017/04/attempting-rv-camping-part-4.html" target="_blank"><span style="color: purple;">Attempting RV Camping - Part 4: Realizations, Meeting Another Lilli, and Coming Home</span></a></h4>
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<h3 style="text-align: left;">
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-11481629281218936662017-04-28T19:33:00.000-04:002017-05-01T10:43:28.835-04:00Attempting RV Camping - Part 2: The Actual Getting There<div dir="ltr" style="text-align: left;" trbidi="on">
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<h3 style="text-align: left;">
Getting on the Road with Shoes</h3>
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<br />
We finally pull out of my driveway with enough stuff for a two week camping trip, (only going for two days, three nights) and drive an hour and 20 minutes to my in laws' house. This first leg of the trip is necessary because the closest RV rental place is in their town. But also we need my in laws' help to make this happen and actually get on the road. Without their help, things would have been much more difficult.<br />
<br />
We will leave both of our cars and our sanity at their house when we pull out in the RV in a few hours.<br />
<br />
My mother in law feeds the kids lunch while my father in law drives me to the RV rental place to meet my husband. When I get there, he is getting through all the paperwork stuff and I duck into the bathroom to swipe on lipgloss and rake my fingers through my crazy hair. I look haggard. I look like I have four kids and spent the last seven days packing for a camping trip or something.<br />
<br />
My husband pulls the 30 foot RV out into the parking lot and I laugh and snap a picture. This is going to be an adventure indeed, no matter what happens.<br />
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<tr><td class="tr-caption" style="font-size: 12.8px;">My husband, his first minute behind the wheel of the 30 foot RV. I'm laughing. I won't be laughing in a few hours though.</td></tr>
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I follow him back to my in laws' house and we proceed to unload our two cars and cram everything under the sun into the RV. The kids are squealing with excitement, climbing all over the RV. We can't wait to get on the road.<br />
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Jasen is still in his office clothes since he came straight from work to meet us. He goes to get changed and realizes something that I had not envisioned in all of my many hours of planning. He only has his work dress shoes. He forgot to pack his sneakers. How can we go to the beach with him only having dress shoes? Can he wear my father in law's? No. Wrong size. Can he just go barefoot the entire time? Really, will the fashion police arrest him if he walks to the beach wearing a bathing suit and black socks and dress shoes?<br />
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For the first hour of our big adventure in the RV, we go shoe shopping. My husband awkwardly parks the huge beast in two different parking lots and runs into stores trying to find cheap sneakers in his size. I try to bite my tongue and make the best of it, giving the kids snacks and making a big deal out of how cool the RV is.<br />
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<i><br /></i><b>Regret #1:</b> I made detailed check lists for every article of clothing and shoes for each child and myself. But <i>I did not make a list for my husband. Darn it.</i><br />
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<a href="https://3.bp.blogspot.com/-sdIXB_RWYRU/WP_pAsKaZaI/AAAAAAAABSg/ZtyzcvT-dXkuXPA-UmFTkuiIyH-_xIYogCLcB/s1600/IMG_1689.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-sdIXB_RWYRU/WP_pAsKaZaI/AAAAAAAABSg/ZtyzcvT-dXkuXPA-UmFTkuiIyH-_xIYogCLcB/s320/IMG_1689.JPG" width="240" /></a>We get on the road and listen to a mix cd from our newlywed days as we barrel down the highway loaded down with bikes, two strollers, and everything possibly needed for a camping trip.<br />
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<br />
And new sneakers.<br />
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They're kind of ugly but that's ok. No one will know us at the beach.<br />
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The newlywed music makes me remember that I love him, even though he forgot his shoes. We're on our way. We love each other. We are all happy. Life is good.<br />
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And then, we stop for gas.<br />
<br />
<h3 style="text-align: left;">
The Mood Shifts</h3>
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In the next few hours, the happy hopefulness unravels.<br />
<br />
We encounter a pushy yelling panhandler at the gas station who bangs on the RV and won't go away. He explains his family is stuck at the gas station and his wife is pregnant and they've run out of gas as he points to his family: a woman who looks past menopause, and three teenagers on their cell phones and drinking soda. He wants some money to put gas in his car. A story my husband has heard multiple times from other gas station pan handlers and wishes they'd come up with a new backstory. <br />
<br />
I am struggling with getting Lilli to the tiny RV potty and I say, "I really need your help, tell that guy you have to help your wife and daughter."<br />
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My husband explains he's busy helping his wife with his special needs daughter and will be out to talk to him after he's done. The man repeatedly knocks on the doors and windows, impatiently circling the RV. I can see my husband's patience running out as he takes off his watch which he explains to me later he didn't want it to get damaged in case he needed to practice his years of martial arts practice. Apparently the man decides that his circle and knock strategy wasn't working so he changes tactics and begins sobbing uncontrollably, apologizing for bothering us and blubbering "I didn't know you had a daughter with special needs...I'm sooooo sorrryyy-eee-eee-eee." My husband has had enough...he sternly tells him to stop the act. He responds "I'm not acting. I can't help it. I'm sooooo sorrryyy-eee-eee-eee?" Again, with more volume, my husband tells him to be quiet and stop faking it, and stop taking advantage of people. <br />
<br />
The man immediately stops crying and looks at him with a look that says "ok, you got me" and gives him a fist bump.<br />
<br />
My husband gives him two bucks and tells him he's only doing it in Jesus name and continues to lecture him on how to act. Josh and Chloe are wide-eyed, taking in the show. While all of this is going down, everyone is using the RV potty so that we don't have to put on four little pairs of shoes and all go into the gas station bathroom. Lilli gets anxious and cries over using the potty that is in a narrow space, up on a step and is difficult for her to navigate. When all bladders are empty, we roll on.<br />
<br />
I will note here that the entire drive, Nate was angry because he was in a carseat, and he could not enjoy the fun opportunity to ride on a bench or be close enough to reach the table. His seat was placed in the only spot that had a seatbelt for a carseat. Everyone else swapped around throughout the trip, but he had to stay put. Everytime he started to really lose it, I pulled out a new snack or book. He ate many snacks. <i>Many.</i> He asked for two bananas, and also ate a huge bunch of grapes, a box of raisins, a cookie, some chips, some pretzels, and other foods I can't remember. He ate a LOT. This information is important to remember for later.<br />
<br />
On the road again, Lilli is doing a strange staring thing and I try not to panic.<br />
<br />
"Hon, don't get alarmed but I think Lilli might have a seizure. She's staring and not responding. She's not watching her movie and she's doing this weird thing with her lips. Keep driving and I'll let you know if you should pull over," I say as calmly as I can. Even though I feel anxiety rising up within me.<br />
<br />
Chloe and Josh sit mutely on the bench seat, watching me across the aisle.<br />
<br />
"Are you guys ok?" I ask them.<br />
<br />
"No, we are not OK!" Chloe responds. "This is very stressful! First, that strange scary guy at the gas station banging on the RV and now Lilli might have a seizure!"<br />
<br />
"It'll be ok," I say. (<i>Will it?</i>) "Lilli is ok right now. I'm watching her. It's going to be ok."<br />
<br />
Jasen is driving on a back road now, with stop lights. It is after 9 pm and dark. He asks over and over again if Lilli is ok, what is she doing, how is she acting? I tell him she is fine, but he should probably pull over soon and adjust her. Chiropractic adjustments have helped her seizures many time before.<br />
<br />
My husband shocks me by pulling up to a red light, throwing the RV into park and leaping out of his seat. He whips around to the table where Lilli is seated, and adjusts her neck. "Tell me when the light is green!" he yells to me.<br />
<br />
<i>What? This is so crazy.</i> A funny image pops up in my mind of my husband with a cape and I think to myself, "It's SUPER CHIROPRACTOR!!!"<br />
<br />
"It's green! It's green!" I yell. He jumps back into his seat and we take off again.<br />
<br />
I watch Lilli carefully, and pull my phone out to check the GPS. I'm supposed to be navigating here. My husband is totally depending on my directions. I am totally depending on the address I have scribbled down on my notes from weeks ago when I made the reservation.<br />
<br />
It doesn't look good when we pull up to the address and it's the middle of the road with nothing but grass on the side.<br />
<br />
"You have reached your destination," the GPS woman tells us.<br />
<br />
<i>Oh no we haven't, lady.</i><br />
<br />
Jasen keeps driving. He pulls up to a fork in the road and turns around. Just then, Nate lets out a cry and says something about a "Boo boo" in his belly and proceeds to throw up an enormous amount of puke all over himself.<br />
<br />
Oh yes. I had given him too many snacks.<br />
<br />
<i>Ok. Ok. It's going to be OK.</i> I get rubber gloves out of a box I brought, thankfully, and a bag, and wipes. I start to try and clean up Nate while balancing in the middle aisle. Jasen has to make a u-turn.<br />
<br />
"Hold on!" he yells. I plant my feet like I'm on a surf board in the middle of the aisle.<br />
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<tr><td class="tr-caption" style="text-align: center;">Nate's seat. </td></tr>
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<br />
<br />
<b>Regret #2: </b><i>We drove too far, </i>I think as I clean up the puke while we make not one, but FOUR U-TURNS in a huge RV on a dark back road. <i>We should've tried our first RV trip out at the closest RV park next to where we rented it. WHAT were we thinking??</i><br />
<br />
A box with pots and pans and pot lids and dishes slides off another box and crashes onto the floor as we round one u-turn. My husband and I yell back and forth to each other about directions. I rip off the gloves and punch something different into the GPS to see if that works. Finally, we see the tiny, unlit sign. We pull up to the dark, locked gate.<br />
<br />
Everyone is calm, trying to keep their emotions in check. Wait. No they aren't. I was kidding. We are traveling with four young kids past their dinnertime, with boxes thrown all over the RV floor, one kid covered in puke, and the others aren't doing so hot either at this point. This is a test of marital strength, moments like these. Can we make it? Yes. We will. Because we are all trapped in this hot mess together. And we have to share the beds and the food tonight. And I know where the homemade chocolate chip cookies are hidden, and I will be eating as many as I can when we finally get there.<br />
<br />
Fortunately I had called the campground office earlier and let them know we would be arriving after hours, and I had the gate code. Otherwise we would've been locked out and forced to find a place to park the RV for the night. At least we were "Glamping" like someone told me we were doing. Glamour camping in an RV, not a tent. But really, is it "glamour camping" when you travel with four young children and someone throws up?<br />
<br />
I'm not sure.<br />
<br />
<br />
<h3 style="text-align: left;">
Unauthorized RVing</h3>
<br />
Jasen unlocks the gate and we pull into the pitch black campground where we proceed to get lost.<br />
<br />
Again.<br />
<br />
We argue about driving into an area that is clearly marked with a sign: AUTHORIZED VEHICLES ONLY.<br />
<br />
"Hon. Authorized vehicles only, that's not us. We aren't authorized," I say.<br />
<br />
"Yes but I really think this is it. I'm going to take it."<br />
<br />
"Don't. PLEASE DON'T. Authorized vehicles only, that's like, maintenance stuff, it's not for us! I'm telling you!"<br />
<br />
He turns in and drives onto the authorized vehicles only road.<br />
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We come to a dead end of dark nothingness, where we sit and idle for a moment, collecting ourselves. My husband realizing that<i> ok no, we were not authorized after all</i>. And me, barely keeping the lid on my anger because I'm about to say things that will only make this mess worse.<br />
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We have to back the RV up in the dark to get back out of the authorized vehicles only area. We slowly back up on the road and out and around the AUTHORIZED VEHICLES sign, in silence.<br />
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<i>It's going to be OK. We will survive this trip. It's only the first day.</i><br />
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I google a campground map. Oh Google, I do love you.<br />
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We finally find our campsite thanks to the online map and my husband backs into it and parks like a pro. After all, he had all that other backing up experience in the authorized vehicles only area. We both get out and he hooks everything up while I hold my phone flashlight up for him to see. Inside the huge expensive hot metal box of stuff on wheels, Josh and Chloe are fighting. Lilli is crying. Nate is sleeping in his carseat completely covered in throw up.<br />
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Yay! We're HERE!!!!<br />
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We eat dinner at midnight after washing off poor Nate in the teeny RV shower. We toss the offensive pukey carseat outside onto the grass. It is far past "quiet hours" in the campground, yet our family is not at all quiet as Nate cries while getting washed off and Lilli cries while we try to get the devices onto the wifi. I had asked for the wifi code ahead of time too when I called the campground office. I only hope these little walls are thicker than they seem. Whoops, we left a few windows open to let fresh air in because of the throw up stink. Our neighbors are going to LOVE us.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-9fPybsPR8yI/WP_WnZvrPyI/AAAAAAAABR8/5xdhtcp901YfR0RiIMRG5mdXcnrf2zkMgCLcB/s1600/IMG_1799.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://4.bp.blogspot.com/-9fPybsPR8yI/WP_WnZvrPyI/AAAAAAAABR8/5xdhtcp901YfR0RiIMRG5mdXcnrf2zkMgCLcB/s320/IMG_1799.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">After midnight-ish. We're here!! Nate is in bed behind me, finally cleaned up. The dirty carseat is now outside. Josh is getting ready in the bed up over the cab. Chloe is watching the end of a movie. Lilli is in the back room on the wifi, trying to keep it together. I may have already eaten a few cookies before this was taken.</td></tr>
</tbody></table>
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Everyone falls into the beds and promptly they all fall asleep. Except for me. I, the last one up, eat several chocolate chip cookies by myself in the tiny kitchen. I set up the Keurig and unpack our mugs and sugar for our morning coffee. Camping with a Keurig might be glamping.<br />
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We made it. We are here. We took a chance to try this adventure and we are doing it.<br />
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Just before I fall asleep, I check the weather for tomorrow:<br />
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Rain.<br />
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<h4 style="text-align: left;">
to be continued in the next post... <a href="http://wherelilliblooms.blogspot.com/2017/04/attempting-rv-camping-part-3-sun-always.html" target="_blank"><span style="color: purple;">Attempting RV Camping - Part 3: The Sun Always Rises</span></a></h4>
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</div>
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</div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-25568103191136183112017-04-28T14:49:00.000-04:002017-05-01T10:41:49.277-04:00Attempting RV Camping - Part 1: Neurotic Craziness Before the Trip Craziness<div dir="ltr" style="text-align: left;" trbidi="on">
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Neurotic Packing</h3>
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We leave in three days.<br />
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My house is a complete wreck with cooking and packing. I tell a friend, "I'm excited and terrified at the same time. I read on the campground website that there's spotty wifi at the campsites. Pray for us!" </div>
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We laugh together. She gets it. Like me, she has a child who has autism and an addiction to Youtube. We laugh, but it's no joke. The meltdowns that ensue from spotty wifi with a child with autism consistently, negatively impact our family life. We <i>have</i> to have good wifi for the survival of our family.</div>
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The weird things I have to think of to pack for Lilli. With my other children, the list is normal:</div>
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<i>Clothes. Books. Beach toys. Hats. Sandals. Board games. </i>We are so excited for this, we cannot even stand it. </div>
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At the top of Lilli's list: <i>Seizure meds. Handicap placard. New movie download onto kindle. Extension cords. Add extra data onto phone plan. Bags of legos. Make a movie choice book. Extra cheesepuffs.</i></div>
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Seriously.<br />
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<i>Clothes?</i> <i>Oh yeah, those too.</i></div>
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I have spent hours figuring out how to keep Lilli happy on this trip. I have gone above and beyond with the planning for her.<br />
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I am torn down the middle with happy anticipation and fear. We have never camped with all of our children. My husband has taken Josh and Chloe camping. But I couldn't go. I stayed home with Lilli and baby Nate. We didn't think Lilli could handle tent camping. So we split the family up. I could've figured out how to take a baby camping and it would've been easy compared to taking Lilli. It was just something we had to do for Josh and Chloe. Sometimes it's hard to figure out how to do things as a family with special needs.<br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-kaNi73BFMSA/WQOMlfEuwqI/AAAAAAAABVE/5Lo5zFWQ-JE9eZf9CXN3FT7knUYDMtYFgCLcB/s1600/14425428_10211130047672082_3447865644038826089_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://2.bp.blogspot.com/-kaNi73BFMSA/WQOMlfEuwqI/AAAAAAAABVE/5Lo5zFWQ-JE9eZf9CXN3FT7knUYDMtYFgCLcB/s320/14425428_10211130047672082_3447865644038826089_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camping with their dad</td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-crCnSD6WvyA/WQOMlgSpm6I/AAAAAAAABVI/ZD17rolABm8rV0ApUBIriCZHPUahW-V9wCLcB/s1600/14468725_10211130047832086_3233201772071934942_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-crCnSD6WvyA/WQOMlgSpm6I/AAAAAAAABVI/ZD17rolABm8rV0ApUBIriCZHPUahW-V9wCLcB/s320/14468725_10211130047832086_3233201772071934942_o.jpg" width="320" /></a></td></tr>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-2plofbhbOgY/WQOMlWT3NhI/AAAAAAAABVA/7xmK_rRT3m812wCwvRJbDuf9No1iJLmIQCLcB/s1600/14481747_10211130047552079_4392246701094136398_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://4.bp.blogspot.com/-2plofbhbOgY/WQOMlWT3NhI/AAAAAAAABVA/7xmK_rRT3m812wCwvRJbDuf9No1iJLmIQCLcB/s320/14481747_10211130047552079_4392246701094136398_o.jpg" width="320" /></a></div>
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I hate splitting up. But we could not figure out how to camp. And then one day we came up with this crazy idea that maybe, just <i>maybe</i> we could all try camping together if we rented an RV. </div>
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The RV is purely for Lilli. We have this plan and we think it might work. If it works, life will change for our family.<br />
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Is this crazy that we are attempting this? Why is it such a big deal? It is a big deal because we have to think about things for Lilli that we don't have to think about for our other kids. I'm barely thinking about my other kids, not concerned at all about how they will do on the trip. Sunscreen? Stuff to do? They will be fine.<br />
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But what if Lilli has a seizure while we are on the trip? How far will we be from a hospital if we need one? What if I forget something very important for her? What if she cries a lot? What if she wakes up at 4:30 in the morning (extremely likely) and screams and sobs loudly and everyone in the campground can hear her? (quite possible) Will the air purifier that we are bringing do a good enough job of clearing the smoky smell out of the RV if we have a campfire for the other kids? (<i>Who brings an air purifer on a camping trip?</i>)<br />
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But...what if it's great? What if Lilli is super happy? What if it is the most fun trip we have ever been on together? What if this is the best thing our family has ever done, to go camping in an rv?<br />
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I have both anxiety and excitement.</div>
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I can't wait! But I'm scared.<br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-zeM0mkOAeBA/WP_thPOFDlI/AAAAAAAABTQ/k7rkdkJ6lnoG4TzLnF4rAmVCUPZLZs0zwCLcB/s1600/IMG_1870.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://2.bp.blogspot.com/-zeM0mkOAeBA/WP_thPOFDlI/AAAAAAAABTQ/k7rkdkJ6lnoG4TzLnF4rAmVCUPZLZs0zwCLcB/s320/IMG_1870.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">Temporary movie choice book I made just for the trip. I wish I would've taken a picture of the bags and boxes I packed JUST for Lilli.</td></tr>
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<h3 style="text-align: left;">
The Day Before</h3>
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Lilli wakes up at 5. The sleeping pills are not really working. But 5 is better than 4, I guess. I wake up teary, feeling defeated. I am woken up this way very often. But then after a cup of coffee, I feel better. <i>It's going to be a good day! We are going camping tomorrow!</i><br />
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We have three therapies today, all crammed in at the beginning of spring break before we leave town. I have a list of cooking to do today and still the packing and never ending laundry. I had already packed the kids' bags a few days ago, but then I had to pull clothes out from them for them to wear. So. More laundry and re-packing. Just goes to show you that sometimes, being a last minute person is <i>actually better.</i> I was trying to not be a last minute person. But I did it wrong.</div>
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I begin researching hot spots and I call Verizon at 7 am to buy more data for Lilli. I've got to make sure this piece is in place. </div>
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I am an envisioner. I spend weeks and hours playing out scenarios in my mind. Before my husband and I got married, every night for months leading up to the wedding I would get in bed and fall asleep thinking about walking down the aisle. I would look around in my mind as I walked down the aisle at all the details, enjoying them ahead of time, fixing and changing things in my mind.<br />
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Then I would get up and make lists. </div>
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This is how I handle most big things for our family. Envision. Make extensive lists. Brainstorm potential problems. Work out the smallest details to be preventative and make sure we avoid the worst case scenarios. Pack every possible item that we could ever maybe need in the weirdest situation that might arise, to make sure things go ok. </div>
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So for this camping trip, well I have been RVing in my mind for over a month. Imagining what it will be like. How Lilli will be. Thinking about the setting, like the background and props on stage in a play that I practice in my mind. Trying to work out the kinks ahead of time and make lists so I can think of absolutely every detail and prevent any meltdowns or problems before they can even begin. I know, because I have three other children, that this is not regular motherhood. This is motherhood on crack.<br />
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This is because of autism life.<br />
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If I can pack everything to keep Lilli happy, then the trip will go ok. This is truly what I am thinking. The equation in our family is:<br />
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Lilli is happy = our family can enjoy life. Lilli is melting down = life stinks.<br />
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I know this is wrong. I should not balance everything else in our family on Lilli not having a meltdown. I just...can't really explain it well. We have four kids. Like four wheels on a car. If one of those wheels goes flat: Lilli's wheel, this car ain't going nowhere. I have to try and make sure we don't get a flat.</div>
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I am envisioning the following scenario: My husband and I will be sitting outside the RV in camp chairs next to a campfire. Nate will be running around with Josh, picking up sticks and rocks. Playing with hot wheels in the dirt. We have a small baby pool that we will put sand or water in with toys for Nate to play in. That will hopefully keep him occupied and not so likely to wander away from our campsite. Josh will be hitting things with sticks and climbing any trees, if there are any. Digging holes in the ground. Finding bugs. Chloe will be into cooking things over the fire, chatting and playing board games with my husband and me, and laying on her picnic blanket with her ten year old feet up in the air reading books. The five of us will be doing all the things that people enjoy doing while camping. </div>
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And Lilli. </div>
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Lilli will be inside the RV, crouched on the floor with legos spread out all around her, with her DVD player going and youtube on her phone at the same time. And maybe a bag of cheesepuffs open next to her. She will be separate from us, but happy. Hopefully. She will have her own space with her familiar comforting things around her, and she will be happy. </div>
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And we will enjoy this trip as a family, separate, but together.</div>
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If my plan works, then heck, we are going to buy a camper and camp all over this country. As long as there's full hook ups wherever we go, that is. Oh and wifi. </div>
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Envisioning things in your mind is a way to plan. But there is a serious flaw to this method of planning. You see, life rarely works out the way we plan. There are always hidden surprises. We cannot predict the future. There are twists and turns everywhere. And expectations are set too high for us to ever attain. A therapist once told me that I set my expectations too high, and that's why I'm always disappointed. She told me to work on lowering my expectations. </div>
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So maybe I need to lower my expectations for this trip.</div>
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Let's see... hmm. Okay. If no one is miserable, it will be a good trip. No? Not realistic enough for a family of six? You're right. <i>Let's go lower. </i></div>
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If we don't crash the RV, it will be a good trip.</div>
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If we don't lose any of our kids, it will be a good trip.</div>
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If we make it back, it will be a good trip.</div>
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I think that's low enough.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-W7Mxs79fDIY/WQIuQ63eB8I/AAAAAAAABUU/m8f1iio-d3oO7gu4Ueq5TqfKdv9tw9IJQCLcB/s1600/IMG_0994.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://2.bp.blogspot.com/-W7Mxs79fDIY/WQIuQ63eB8I/AAAAAAAABUU/m8f1iio-d3oO7gu4Ueq5TqfKdv9tw9IJQCLcB/s320/IMG_0994.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">Some of my lists from my trip list binder. Some, but not all. This is about half. I had an entire binder devoted to a three night, two day camping trip. Neurotic? I think maybe a little. </td></tr>
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<h3 style="text-align: left;">
The Morning We Leave</h3>
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It's pouring buckets.</div>
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Great. We have spent $300 to rent an RV to go camping in the pouring rain.</div>
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The "positive" setting on my envisioning is currently out of order. And we are tired, From all the packing for this rainy vacation where we will load up an rv with about 50 bags, drive for hours to park and sit in that rv for rwo days together in the rain and try not to drive each other completely nuts.</div>
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Lord please let us have a little sunshine in the next few days.</div>
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But just in case, I might go pack the kids' rain boots. Cause why not. We have packed practically everything else we own.<br />
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I walk by my toddler who has stripped down to his diaper, and is currently wearing a dirty colander on his head that he pulled out of the recently loaded dishwasher.<br />
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I wonder if we will ever even get out of here.<br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-5chu-dBARyw/WP_Cb4A_2SI/AAAAAAAABQo/nPnFNqDXNfIS5wQWnVVTuFjMt7eoV1IhQCLcB/s1600/FullSizeRender%2B%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-5chu-dBARyw/WP_Cb4A_2SI/AAAAAAAABQo/nPnFNqDXNfIS5wQWnVVTuFjMt7eoV1IhQCLcB/s320/FullSizeRender%2B%25281%2529.jpg" width="231" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">Help me out here, kid. We are supposed to be in the car right now.</td></tr>
</tbody></table>
<br />
...To be continued in <a href="http://wherelilliblooms.blogspot.com/2017/04/attempting-rv-camping-part-2-actual.html" target="_blank"><span style="color: magenta;">Attempting RV Camping - Part 2: The Actual Getting There</span></a><br />
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<h3 style="text-align: left;">
</h3>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-787368630310021592017-04-16T09:04:00.000-04:002017-04-16T16:03:53.308-04:00Easter Morning Hope<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "arial"; line-height: 1.38; white-space: pre-wrap;"><span style="font-size: small;">Easter Morning 2017</span></span></h3>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The sun has not risen yet. After awkwardly stumbling down the dark hallway, Lilli opens the cupboards in the dark kitchen, looking for the iphone. She accidentally knocks the mug holder that is on the counter onto the floor. Mugs clatter and roll. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It is my turn to get up with her this morning and at the sound of the fallen mugs I already feel my temper rising within me. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It is Easter morning and I wanted to wake up differently. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Not this way. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Not this way that we wake up every day here in this house with a teenager who has autism and cerebral palsy.</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I didn’t want to take her to the potty and wash her 13 year old hands for her. I wanted to sleep. I didn’t want to have to drag the baby gate out and put it up so she won’t repeatedly go down the hallway and open up all the bedroom doors and turn on the lights, waking everyone else up. I didn’t want to have to hide all the devices quickly in the cabinet before she came looking for them, crying for them. I didn’t want to have to push the table back against the wall that she always yanks out because the lego bin is tied to the legs of it because she always dumps the legos. All of this before I get my first cup of coffee. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I didn’t want it.</span><br />
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-XdDAdzgheYw/WPPM7lc7vBI/AAAAAAAABI8/aX2dVe9jEzs9XzZylU0mxRLrG-A0dzBUQCLcB/s1600/IMG_0761.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-XdDAdzgheYw/WPPM7lc7vBI/AAAAAAAABI8/aX2dVe9jEzs9XzZylU0mxRLrG-A0dzBUQCLcB/s320/IMG_0761.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lillil's current corner. The table I push back every day. I have to give her a corner to try and keep the legos sort of in one place. The laundry basket is tied to the table in hopes that she won't dump the entire basket multiple times a day. She tries. My plan doesn't really work that well. </td></tr>
</tbody></table>
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I feel anger, but my anger is strangely directed. It is not toward my daughter.</span></div>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Whenever I feel this anger, it is because I feel so alone. </span><span style="font-family: "arial"; line-height: 22.08px; white-space: pre-wrap;">I feel angry at people who judge us for looking for answers to help our daughter, and judge the decisions we make. I feel angry at people who have formed opinions about us, yet they will never have to live this life we live. They have never walked in our shoes. They have no idea what it is like. </span><span style="font-family: "arial"; line-height: 1.38; white-space: pre-wrap;">Others come to help and go. But in the end, we are the ones who are left to deal with how our daughter is. This is why we are always searching for ways to figure out what happened and how we can help her. It is because I worry about the future, and I see years of this same scenario playing out before me in my mind with no relief. I think about how I will be living this same morning routine when I am 70, and it hurts my heart more than I can describe.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">She falls on the floor and cries. I want to cry. I am so not up for this today. She comes to me a dozen times, pulling on me. Crying. She finally gets settled with watching Cinder Elmo on her mini DVD player, probably the 25th one we’ve bought for her since she’s broken all the rest.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And then I sit down with my coffee. I take a breath, and I think, </span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">it’s Easter.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Thank God it’s Easter. Thank you Jesus, I need today. We all do.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Tears fall. Tears of sorrow and relief at the same time. Sorrow for the deep pain we all experience in this life. Relief that there is hope.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">These words I have clung to for the past few weeks:</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. </span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">What does that even mean? </span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Wonderful joy ahead</span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">? It means we don’t even know how amazing it is going to be when we get to heaven. Because this life is darn hard, and only getting harder. And this hope we have, through Jesus Christ, of heaven after this life is over...this is what gets me through. And these "trials" in life? Wow, I don't even know what a true trial is. I am blessed. Despite our daily challenges, we have freedom in this country and so many blessings to be thankful for in life.</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-QMOoc_9Berg/WPPN6e1SdTI/AAAAAAAABJE/qonP6gee-l8Plhz8FVZoee9AWo39nEhbQCLcB/s1600/IMG_0763.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-QMOoc_9Berg/WPPN6e1SdTI/AAAAAAAABJE/qonP6gee-l8Plhz8FVZoee9AWo39nEhbQCLcB/s320/IMG_0763.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The current verse above my doorframe.</td></tr>
</tbody></table>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>Easter is Better Than Christmas</b></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Easter is truly the best day of the year. It is the holiday of hope, of miracles, of redemption and salvation. Easter is love and joy and thankfulness. Easter is the most amazing day we have. </span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It’s better than Christmas! </span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I tell my children. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ahhh, wait a second, better than Christmas? I don’t think so… </span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">some of you are thinking right now. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I explained to my kids that we celebrate Jesus being born at Christmas, and that’s an amazing thing - to celebrate his birth! You could argue that we wouldn’t even have Easter if we did not have Christmas!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But we would not have the eternal hope we have if we did not have Easter. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Without Easter, Christmas is just someone else’s birthday. </i></span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Yes today there will be chocolate, and baskets, and an egg hunt in our back yard. There will be hours of family time and food and laughter and hugs. We will truly enjoy today together. But we will remind our young children why we are celebrating today. My seven year old would tell you that it’s because Jesus died on the cross for us. But it’s not just because He died, it’s because he </span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">rose again</span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. This is nonsense to many. Others do not know why we believe this. Why do we trust so deeply in something that others joke about and see as complete ridiculousness? </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I would say tell me what faith is. Tell me what hope is. Tell me what you think this life is about. Why are we even here? Is this life all there is?</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I hope for things in this life, but I have no guarantee of anything of what will happen on this earth. But I have a guarantee in heaven. And that is a hope I can count on. That is why I celebrate. That is why I can go on. Because of this:</span></div>
<b style="font-weight: normal;"><br /></b>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<b><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">1 Peter 1:3-7 (NLT)</span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The Hope of Eternal Life</span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">3 All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, 4 and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. 5 And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.</span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">6 So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. 7 These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.</span></b></div>
<b style="font-weight: normal;"><br /></b>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I pray that my children have an understanding of true hope as they grow up. Because this life is hard. But today gives us a reminder of our hope. Blessings to you and yours on this beautiful Easter morning. Enjoy your families. Enjoy the eggs and chocolate. And be reminded of HOPE.</span></div>
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<b><span style="background-color: transparent; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Hebrews 13:14 </span><span style="background-color: #fdfeff; color: black; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">NLT</span></b></div>
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<span style="background-color: #fdfeff; color: #001320; font-family: "arial"; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>For this world is not our permanent home; we are looking forward to a home yet to come. </b></span></div>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com1tag:blogger.com,1999:blog-6544187541488651945.post-58906716978692200002017-01-01T23:45:00.002-05:002017-01-02T11:47:44.544-05:00The Gratitude Experiment<div dir="ltr" style="text-align: left;" trbidi="on">
<h3 style="text-align: left;">
<b>July 2016</b></h3>
<br />
I wake up to shrill screams and high pitched shrieks.<br />
<br />
My husband had gotten up with Lilli at 6. I had been up earlier, gotten the baby back to sleep. and had dozed off.<br />
<br />
I lay there, trying to block out the screaming, thinking of thankfulness.<br />
<br />
<i>Five things. Think of five things to be thankful for.</i><br />
<i><br /></i>
<i>Ok...</i><br />
<i><br /></i>
<i>.....</i><br />
<i><br /></i>
<i>Ok think of three things.</i><br />
<i><br /></i>
<i>Ok... think of...one thing. Just one.</i><br />
<br />
<br />
The air conditioner hums in my window, almost drowning out the screaming, but not really.<br />
<br />
<i>Air conditioning. That's what I'm thankful for right now.</i><br />
<br />
<i></i>I am thankful for the air conditioning unit in my bedroom window. All six of us have been sleeping in this bedroom for the hottest weeks of the summer. We only have two, and the other unit is in the kitchen. Even though I wish for central air on many days, that is a first world problem. I am thankful to have a cool bedroom to sleep in, even if it <i>is</i> as an entire family together.<br />
<br />
More screaming. I cannot block it out. I sit up.<br />
<br />
I stumble blindly as I put my glasses on and head towards the awful early morning sound. It's coming from Chloe's room. I glance at my husband down the hall in the living room, He is sitting in a chair, calmly putting on his shoes like nothing is happening.<br />
<br />
"What?" I ask simply with exhaustion and confusion.<br />
<br />
"I don't know. I was getting ready and she just started screaming. I have to go to work," he says distractedly as he ties his shoelaces.<br />
<br />
This "waking up to a twelve year old, screaming crying" scenario happens almost daily. We are used to it. It is our lives. We take turns letting the other spouse sleep while getting up with Lilli, who never sleeps in. She wakes up loudly anywhere from 3am to 6am...a rare 7am if we are super lucky. She instantly wants a movie, and if it's not the right one, look out. There is no reasoning with autism. Life with autism is a never ending walk on eggshells, keeping all the spinning plates balanced on sticks. When we have visitors or we visit someone, we hand her the iphone with Youtube immediately. No one wants to hear that crying. So visitors don't know what it's really like. Because on regular days when it's just our family, we say "No. No you can't have the iphone at 5am." And we endure the meltdowns if we have the strength.<br />
<br />
I push open the bedroom door.<br />
<br />
She is laying on the floor curled up in fetal position, shrieking with all she's got in her.<br />
<br />
I stoop down and put my hand gently on her leg. She pauses. I ask her what is happening, even though she can't speak to answer me. I brush back her hair from her wet, tear covered face. She does that hiccuping sigh thing kids do after a hard cry. The first thing I do is pull her long bangs back from her face and pin them up with a barrette. Her face is covered in gold glitter. I inspect to see if maybe she got glitter in her eye. No. doesn't seem so. Like a detective, I know what happened without being told. She had a meltdown out in the dining room where her sister had spilled glitter the day before and we hadn't gotten it all up yet. Lilli puts her hands on her face when she is having a meltdown. She was crawling on the carpet and got the glitter on her hands, then rolled on her side and put her hands on her face in anguish. I've seen it a hundred times.<br />
<br />
So now she is angry, frustrated, and covered in glitter.<br />
<br />
I lean over and put a tape in the ancient VCR that she loves. The screen fills with a snowy veggie tales movie. She hands me another tape. She doesn't want Veggie tales Jonah. She wants something else. I try two more tapes that she hands me. Two different Elmos. Finally, she settles and gets up and walks out of the room. I sit there, groggy from being jolted out of sleep by a meltdown and no coffee yet.<br />
<br />
Another mysterious meltdown is over. Something mysterious set her off, and something mysterious settled her down.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-yzWFAK2O1sI/WGnIeIHkkrI/AAAAAAAABGs/YWyfQ8LHW4Q2unFgtQq5cw5xSy4wv_HHQCLcB/s1600/IMG_7875.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://3.bp.blogspot.com/-yzWFAK2O1sI/WGnIeIHkkrI/AAAAAAAABGs/YWyfQ8LHW4Q2unFgtQq5cw5xSy4wv_HHQCLcB/s400/IMG_7875.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Glitter. Not on purpose.</td></tr>
</tbody></table>
<br />
I know from daily experience that it is very difficult to have a thankful heart when you have an autistic child screaming throughout your house every day for hours. This has been most of my summer. Crying and screaming.<br />
<br />
It's just plain hard to be thankful sometimes.<br />
<br />
Lots of things cover up gratitude.<br />
<br />
Physical pain.<br />
Bad news.<br />
Bitterness.<br />
Anger.<br />
Exhaustion.<br />
Depression.<br />
When you are mentally and physically drained.<br />
<br />
When you are experiencing a very difficult time in life, it can be hard to be thankful. Sometimes even the "gratitude journals" in the bookstore seem trite. Bloggers with empty meaningless posts about trivial things are irritating to me and seem pointless. To take a break from the endless stream of negativity from Facebook, I search Pinterest and I am overwhelmed with projects of free printables in frames that say "JOY!" or "LIVE LAUGH LOVE" void of true meaning to me, overusing words and stealing away their power.<br />
<br />
How are we to press on and remain thankful during the difficult seasons of our lives, when things seem bleak?<br />
<br />
I made up my mind to find out.<br />
<br />
I decide to do a "thankfulness" experiment.<br />
<br />
This experiment will not be easy. But it will not be trite. It will be a sincere challenge to me. I can barely clear my head to think in the midst of my daughter's constant meltdowns, let alone focus on thankfulness.<br />
<br />
This is no way to live an abundant life.<br />
<br />
If I can find a way to be thankful in even the most trying circumstances, then I will feel like I have won at life. Like I have won the life lottery, figuring out the secret to finding true joy.<br />
<br />
I google "Gratitude Journals." And I am not impressed with what I find. I don't like the sappy sugary "write down three things you are thankful for each day," or five things, or ten things, or one thing. Listing things? I don't want it to feel like a chore. What if I don't get to write it down one day? Will I feel like a gratitude journal failure? What if I can only think of TWO things, not three on that day? If I can't think of anything at all, how will that feel? And what about the bore of constantly saying the same thing? <i>I am thankful for my family. I am thankful for my home. I am thankful for food and hot water and heat and plumbing....blah blah blah boring.</i><br />
<br />
I found an article that helped a little bit, but...only a little bit. I liked the title, though. It made me feel like I wasn't the only one who felt this way. The article was called <a href="https://www.fastcompany.com/3037922/i-hated-keeping-a-gratitude-journal-heres-what-worked-instead" target="_blank"><span style="color: magenta;">I Hated Keeping a Gratitude Journal - Here's What Worked Instead</span></a><br />
<br />
So I wasn't the only one who wanted to have a unique experience, not a cookie cutter Hallmark card experience. I was kind of on the right track to finding a way to keep a gratitude journal that wasn't like...keeping a gratitude journal.<br />
<br />
I was looking to be inspired.<br />
<br />
For weeks, I search.<br />
<br />
And then I find this:<br />
<br />
<a href="https://annvoskamp.com/joy-dares/" target="_blank"><span style="color: magenta;">Take the Joy Dare</span></a><br />
<br />
<h3 style="text-align: left;">
The Dare to Find Joy Through Eucharisteo</h3>
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It was an older blog post, from 2014, by one of my favorite authors, Ann Voskamp. She has a book called "One Thousand Gifts." It is about giving thanks for even the smallest of gifts we have in life, and finding grace and joy, She tells a story of her life, with raw, genuine emotion and pain, and how she kept her own list of gifts based on a dare from a friend. She reached a written list of one thousand gifts, and kept going because it was life changing for her. To be thankful and recognize the many gifts she had from God...even the ones borne through pain. Her book is amazing. She has inspired thousands of others to follow her on a journey of finding joy through thanksgiving.<br />
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<i>Eucharisteo</i> is a word that she uses often. It means thanksgiving. The root word <i>charis</i> means grace, and the derivative is <i>chara</i>, meaning joy. <i>When we give thanks in good times and in bad times, we find grace and true joy.</i><br />
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I was hooked. This was no trite "write five things each day" journal experience. Ann Voskamp loves words and fits them together like an artist paints a portrait. She is also a photographer, and she captures glimpses of the gifts in her life with her camera, weaving them among her words. Her 1000 gifts journal provided <i>writing prompts</i>. Prompts to inspire me to look at the world in a different way. Almost like an artist, or a photographer would. Oh that idea went straight to this former elementary teacher's heart, and I instantly loved it. I printed out her entire year's worth of writing prompts and put together a makeshift notebook in a binder. I was all set to begin my thankfulness experiment and my 2016 journey toward eucharisteo.<br />
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But it was...August.<br />
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No matter. I started my year of things to be thankful for ...more than halfway through 2016.<br />
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I fumbled a bit at first. Was I supposed to do every single writing prompt? Could I skip some? What if I had my own thankful thoughts that had nothing to do with the prompts? What if I missed a day? What if I missed a week? Do I number each thing? Do I write down the prompt first or just the answer? I overthink things. I make everything into a "It has to be done a certain way or it will be wrong" task. I didn't want to set myself up for failure by missing anything.<br />
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It was a sloppy beginning.<br />
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I missed a lot of days. Then on other days I wrote a lot. I decided it was better to be free flowing and number as I go, not caring about what day was what.<br />
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Instantly I noticed an internal change in me. It might have been small, but it was significant enough for me to notice it about myself. A shift in perspective. These prompts were helping me to think outside the usual "I'm thankful for my family, my home, food, hot water...etc."<br />
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I was thankful to look out the window and see my two middle children swinging and laughing together on our old swing set - that a sweet neighbor passed on to us years ago and it has blessed our lives so much more than they will ever know. I see that swing set every day. But seeing something is different than actively looking for gifts to be thankful for and writing them down. I don't know why it's different. Maybe it's more meaningful. Pondering the gift of my children swinging on the gift of an old swing set makes it deeper. I thought about my neighbors and wondered if they ever would even know how much having this swing set means to us.<br />
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It is one of Lilli's main sources of pure joy, to be pushed on a swing. Thinking about it all made me...<i>thankful.</i><br />
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<a href="https://3.bp.blogspot.com/-d91VQzRCAgw/WGnI7gl3_EI/AAAAAAAABGw/N0Fg_oP1brMIauIAIM8lMSJWk5fl4ZsmgCLcB/s1600/IMG_8022.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-d91VQzRCAgw/WGnI7gl3_EI/AAAAAAAABGw/N0Fg_oP1brMIauIAIM8lMSJWk5fl4ZsmgCLcB/s320/IMG_8022.JPG" width="240" /></a>I was thankful to have my toddler sit next to me and scribble on a paper with crayons while I sat writing. And then I took the picture when he was finished coloring, and put it in my "One Thousand Gifts" binder.<br />
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I started slipping pictures and notes from the kids into my binder. Instead of letting these tiny gifts get lost in piles of paper all over the house, now I had a special place to keep them, with the purpose of collecting them as gifts. I had to add a bunch of page protectors to keep all of these little love notes and trinkets and pictures.<br />
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<tr><td class="tr-caption" style="text-align: center;">Handmade anniversary gifts to us from Chloe and Josh</td></tr>
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The prompts were unique, and my list became interesting.<br />
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I was taking the time to really notice things around me.<br />
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Gift #15: <i>A gift upside down</i>: Josh doing flips on the trampoline and yelling, "Mom! Watch!"<br />
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Gift #16, 17, 18: <i>Three gifts in water:</i> The kids laughing and playing in our pool. Walking under a waterfall with Chloe. Chloe delighting in playing in the rain with her friend until she's soaked through.<br />
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<tr><td class="tr-caption" style="text-align: center;">Chloe and me... and other random strangers. Before we walked behind the waterfall.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Gifts.</td></tr>
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I wrote my own gifts without writing prompts too, whenever I felt inspired. This experiment was helping me to see things in a new way. I was learning to look for the tiniest gifts in life to be thankful for. The big things are obvious. But life is really not made up of big things. It is really made up of hundreds of tiny gifts strung together everyday to make up our daily moments and hours. It's like an amazingly long necklace, with millions of tiny beads. Every once in awhile, there's a big, amazing, sparkling bead. But mostly the necklace is held together by the many small beads.<br />
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These are the moments of life. The little beads. The gifts we search for, to be thankful for.<br />
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Gift #109: Lilli's smiles yesterday and today - laughing and happy all day yesterday.<br />
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Smiles. I was so thankful for smiles. Would I have thought to be this thankful for these little things a year ago?<br />
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<h3 style="text-align: left;">
Hard Eucharisteo</h3>
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And then there is the <i>hard eucharisteo</i> part.<br />
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And I think this is the part that makes me really love this experiment with gratitude.<br />
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Every month, there is a prompt to describe <i>hard eucharisteo.</i><br />
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Ann Voskamp defines <i>hard eucharisteo</i> as "the hard discipline to lean into the ugly, the hard times, and still be able to give thanks, find joy, find grace."<br />
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Being thankful in the hard times. Being thankful when life is tough and everything is falling down around you. Being thankful in moments of anger and despair. When everything is going wrong, finding something to be thankful for even when it feels like there is nothing good at all in that situation.<br />
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<i>Oh my heart. That was what I needed the most</i> - to find a way to be thankful in the tough moments. To be thankful despite the screaming. To be thankful even though my heart is continually breaking, weary, and either becoming numb or succumbing to despair during the continual letdowns, meltdowns and frustration that seems to intensify every year of being a caregiver for Lilli.<br />
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Maybe being thankful, <i>hard eucharisteo</i>, was what would save me. Restore me.<br />
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I still think about my post about <a href="http://wherelilliblooms.blogspot.com/2014/05/a-baby-news-and-restoration.html" target="_blank"><span style="color: magenta;">restoration</span></a>, and I still pray often that God would restore me. Now I would add to that habit by practicing <i>hard eucharisteo</i>. Seeking desperately to find gratitude for the gifts in my life... in the midst of difficulties.<br />
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This was stretching me. One month I wrote about a fight I had with my husband, but good came out of it. Mining the good stuff out of the bad, searching for the gifts to be thankful for...this was what I wanted.<br />
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<h3 style="text-align: left;">
September 2016</h3>
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<br />
140 gifts later...<br />
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September 9th is a turning point for me. I stumble across my newest favorite verse: Ecclesiastes 5:19-20.<br />
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<b><span class="text Eccl-5-19" id="en-NIV-17417" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px;"><span class="versenum" style="box-sizing: border-box; font-family: "arial"; font-size: 12px; line-height: 22px; position: relative; top: 0px; vertical-align: top;">19 </span>Moreover, when God gives someone wealth and possessions, <span class="crossreference" data-cr="#cen-NIV-17417R" data-link="(<a href="#cen-NIV-17417R" title="See cross-reference R">R</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>and the ability to enjoy them,<span class="crossreference" data-cr="#cen-NIV-17417S" data-link="(<a href="#cen-NIV-17417S" title="See cross-reference S">S</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> to accept their lot<span class="crossreference" data-cr="#cen-NIV-17417T" data-link="(<a href="#cen-NIV-17417T" title="See cross-reference T">T</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> and be happy in their toil—this is a gift of God.<span class="crossreference" data-cr="#cen-NIV-17417U" data-link="(<a href="#cen-NIV-17417U" title="See cross-reference U">U</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span><span style="background-color: white; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px;"> </span><span class="text Eccl-5-20" id="en-NIV-17418" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px;"><span class="versenum" style="box-sizing: border-box; font-family: "arial"; font-size: 12px; line-height: 22px; position: relative; top: 0px; vertical-align: top;">20 </span>They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart.</span></b><br />
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<i>They seldom reflect on the days of their life</i>. .....They don't sit around and feel sorry for themselves.<br />
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<i>Because God keeps the, occupied with gladness of heart</i>..... because they are so busy being thankful for what they have going on in their lives at the present, they don't have time to get down.<br />
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So this is a gift from God. To be able to enjoy what you have. This is a prayer we all should be continually praying.<br />
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<i>Dear God, please keep me thankful, please help me to accept this lot in life you have given me and be happy in my daily work. Dear God, please keep me <u>occupied with gladness of heart.</u></i><br />
<i><u><br /></u></i>
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<h3 style="text-align: left;">
December 31, 2016</h3>
New Year's Eve day. My turn to get up with Lilli. I turn on the movie and the light for her before I even get coffee. I turn on the coffee pot and wait...it takes me forever to realize there is no water in the pot and I am just trying to percolate dry grinds.<br />
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Lilli is unhappy. She cries and falls on the floor in sobs and anger. She pulls on me. She puts things in my lap. She opens up all the cabinet doors and leaves them open - a pet peeve of mine. She whines and cries and I think she will wake up the other kids, so I give her an iphone to watch movies on. Because I can't take it today.<br />
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She quiets. Later, I find her hiding, huddled over the phone in a back bedroom. She has had a potty accident. She didn't come to me. She is deep into watching Elmo on Youtube.<br />
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I take her to the bathroom, and as I pull down her pants, the "accident" rolls out onto the floor. I don't know why, but tears well up and I feel so depressed when that happens. I have been taking care of Lilli's potty issues for almost 13 years. We have been potty training her for 8 years now.<br />
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I'm on my hands and knees, and tears fall as I clean her up and clean up the bathroom floor, I think about awful things like <i>will I always be doing this? Will she have to go into an institution one day when I get too old to take care of her? Why isn't she making progress with this? Maybe I should give up potty training.</i><br />
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Then, out of the blue, these words pop into my head:<br />
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<i>Hard Eucharisteo.</i><br />
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I stop crying and think about what I can be thankful for. It's hard. I can't really think of anything at the moment. I feel sad. And so alone.<br />
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But later...it's just the boys and Lilli and me, and I pull Play Doh out to keep the littlest one occupied. Soon my six year old comes over and joins in, and we decide we should just make some of our own play dough. He happily helps me mix it up. My two year old is delighted to squish it and explore with all the many cookie cutters and tools we have. My six year old says adorable things that make me smile.<br />
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My heart is thankful for this moment. I couldn't figure out how to be thankful for what just happened with my daughter, but I can still find other gifts to be thankful about.<br />
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Later I reflect on it all, and I feel thankful that I have matured as a caregiver. I can handle a lot of bad stuff. I can handle awful things with a strange calmness. I get sad, but I get through it. I feel lonely, but I am not alone. I may experience despair, but later it is replaced with thankfulness when I focus on the many other good gifts in my life.<br />
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<h3 style="text-align: left;">
New Years Day 2017</h3>
<div>
We are jolted awake in the early morning by Lilli having a seizure. The dark cloud that always settles over my husband and me after she has a seizure, drifts in silently and we try to fight it off. We pour our coffee and try to sit together to drink it and talk. We are interrupted by Lilli crying, and our two year old who comes running out wanting to be held.</div>
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I cannot think of a thing to be thankful about with the seizure experience. It actually breaks open a new container of fear inside me, which seeps out slowly and threatens to depress me for weeks. To explain exactly why would be another entire post. I cannot wrap my brain around <i>hard eucharisteo</i> with Lilli's seizures right now.</div>
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But one day, hopefully, I will. One day I hope to look back on these years and be thankful for what I learned during the tough moments somehow.</div>
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But <i>in</i> the hard stuff, <i>despite it,</i> I can find thankfulness. I have many good gifts.</div>
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Here is why we all need to pray Ecclesiastes 5:19-20 for every single day of our lives: because life doesn't get any easier. Things will always be hard. There will always be sorrow and disappointments. There will be sickness. There will be moments of crying on the bathroom floor.<br />
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But in those moments, if these words pop into your mind:<br />
<br />
<i>Hard Eucharisteo</i><br />
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Then you can get through it. Because you know that life is about the little moments, you can focus on the good in the little moments and you know that one day you will think of something to be thankful for about tough situations. And being thankful helps you to find grace...for yourself, and grace for others. Because we all are struggling in some way, and we need to show each other grace.<br />
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And then you will know that having a truly thankful heart...despite your circumstances....means that you have true joy in your heart.<br />
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Here's to a year of being thankful for 1000 gifts in 2017. If you want to take the Joy Dare challenge like I am, you can click on this link to Ann Voskamp's blog post and print out all the prompts here:<br />
<span style="color: magenta;"><br /></span>
<a href="https://annvoskamp.com/joy-dares/" target="_blank"><span style="color: magenta;">Joy Dare Prompts</span></a><br />
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Her challenge may have been to readers in 2014, but the idea is timeless. I will be continuing to fill up my journal with gifts in 2017.<br />
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As always, a heartfelt thank you to my friends and family who take the time to read to the end of this long post which bares my heart and soul and leaves me feeling vulnerable. But I firmly believe that when God teaches me something, I am responsible for and privileged to share it with others. We all have influence, my pastor says. Use your influence for good.<br />
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Wishing you a blessed, happy new year, filled with many gifts to be thankful for in 2017.<br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com2tag:blogger.com,1999:blog-6544187541488651945.post-57588207481272274332016-07-22T09:27:00.001-04:002016-07-22T10:02:51.220-04:00The Color of a Miracle<div dir="ltr" style="text-align: left;" trbidi="on">
We visited dear friends a few weeks ago.<br />
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In my memories of the visit, I wish I could paint an abstract painting of what it looks like in my mind.<br />
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It is painted with the colors of an incomplete rainbow.<br />
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A swirling storm of colors in a tornado. The heavy, blackish brown of Lilli's many cries, tears, yells of anger and frustration when we were out in public on the two days we visited and tried to do some sightseeing and went to an amusement park.<br />
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Bright, shiny yellow streaks of her shrieks of delight. Broad strokes of pink distinct and delightful laughter. Deep rose swirls of her sweetness when kissing Elmo and giving Elmo tight hugs, and the girl inside the Elmo costume breaking character later and telling us quietly and discreetly that Lilli made her day. Sky blue with the sound of water sprinklers splashing on her hands against a bright blue sky, her mouth in a wipe-open smile.<br />
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<a href="https://2.bp.blogspot.com/-layhsl1TnPs/V5IbSnrLsOI/AAAAAAAABFo/MUtHxMovrhw1Z_fldAb2Tvnv9hIIr5QcwCLcB/s1600/FullSizeRender%2B%25286%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-layhsl1TnPs/V5IbSnrLsOI/AAAAAAAABFo/MUtHxMovrhw1Z_fldAb2Tvnv9hIIr5QcwCLcB/s320/FullSizeRender%2B%25286%2529.jpg" width="210" /></a><a href="https://3.bp.blogspot.com/-GLUSQLblSBo/V5IbQLOzvzI/AAAAAAAABFk/xJ_BVKybk8EhM85Jtpd1JNdtkQnHXjmzgCLcB/s1600/13626583_10210373288633579_8738894793449074104_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="227" src="https://3.bp.blogspot.com/-GLUSQLblSBo/V5IbQLOzvzI/AAAAAAAABFk/xJ_BVKybk8EhM85Jtpd1JNdtkQnHXjmzgCLcB/s320/13626583_10210373288633579_8738894793449074104_n.jpg" width="320" /></a></div>
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Red swirls of the hundreds of unspoken words she tried to convey physically, through hugs, and in pushing us away. The red-orange intensity of her physical efforts trying desperately to compensate for the absence of verbal communication.<br />
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Glittering gold of her strong, gripping hugs. grabbing our faces and looking intensely into our eyes for seconds that feel like a year-long trip into vast blueness, her soul yearning to speak volumes and convey with just one long look.<br />
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Black splotches. A seizure the first night of the visit. My husband and I whispering urgently to each other and working as a team in the middle of the night. Darkness and then sudden light in unfamiliar room while she has the seizure and everyone else is sleeping. Our six year old sleeping through the whole episode, inches away. Then turning off the light after it is all over, and laying in the dark. Two sets of eyes, open. Staring. Thinking. Listening to the sounds of all the breathing in the room. Trying to calm and slow our rapidly beating hearts. The sorrow. The worry. Gray splotches of trying to let it go, move on. It's over. She's OK. Sleep.<br />
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The purple-gray of my heartbreak and defeat so many moments as we try to create a special time and memories for our other three children. But Lilli is crying with despair and shrieking in anger, drawing startled looks of confusion, sympathy, silent questions from strangers all around us. I hold hands with my younger children and point out interesting things, read facts from museum plaques while trying to block out the unhappy noises streaming from my oldest, because there is nothing else we can do or try to make her happy.<br />
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A bolt of shiny silver in one single moment. I push Lilli in her oversized, special needs stroller through a museum that she hates. Her angry cries are echoing through the rooms, accompanied by our shushing and muted notes of Elmo music coming from her mp3 player. A look. A split second seared with a knowing, loving connection. A mom, pushing her little boy in a wheelchair through the rooms with us. She sees my heart and lets me know with one look. She knows. Silent solidarity.<br />
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Only moms of children with special needs have this look. I give her the look too. It is all the colors of our rainbow at once. It is every emotion at once. It is a one second long, life connecting friendship, over in an instant when we both look away.<br />
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Deep dark purple-blue of me sitting at a table with my friend, late at night. Confessing my feelings of sadness, discouragement, frustration in the deep valleys of raising a child with special needs.<br />
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And then, in the middle of the color tornado: a speck of green.<br />
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A new tiny seed, sprouting.<br />
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The words of my friend, coming out of the seed. White. New. Clean. Perfect. Renewing.<br />
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<i>"Remember that you are living in the midst of a miracle. She is a miracle."</i><br />
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She was there the night Lilli was born. She was there. She stayed with me all night. She was there with me for everything when it all began.<br />
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She knows and remembers the miracles.<br />
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<tr><td class="tr-caption" style="text-align: center;">Lilli and my special friend giving her a kiss on the skyride.</td></tr>
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She reminds me.<br />
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I have forgotten.<br />
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Lord, forgive me for forgetting the miracles in the midst of my exhaustion and feelings of defeat.<br />
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We are not defeated.<br />
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She is a miracle.<br />
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She is twelve years of miracles put together, walking, breathing, smiling, running, laughing, hugging. Pedaling a tricycle. Dancing. Jumping.<br />
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She is one miracle, growing into more miracles.<br />
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What color is a miracle?<br />
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It is a color we have not seen yet. It is a color we cannot comprehend. It is a color in heaven, that we will see one day when we get there. We will open our mouths in wonder and awe and understanding, staring. It is a color that exists, but we cannot see it right now. Our eyes are not created to see the color of a miracle here on earth, but we know it is there.<br />
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One day we will see all of the colors together. The ones we can see, and the ones we cannot see.<br />
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A complete rainbow.<br />
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And then the painting will finally be finished.<br />
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<tr><td class="tr-caption" style="text-align: center;">Riding on the merry go round with my girl.</td></tr>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com1tag:blogger.com,1999:blog-6544187541488651945.post-66129030475709762032016-06-12T09:40:00.000-04:002016-07-17T16:28:26.127-04:00Dragonflies and Lilies Blooming<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;">We have experienced much change in the last year since moving. I truly believe most of the changes have been good. We have each struggled in our own ways to adapt and settle in here in our new home in the mountains.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">Throughout this past year in all the ups and downs and in my never ending search for hope, I began to look for signs from God that he is with me. That he has not forgotten about Lilli. That he has heard my prayers over the course of her whole life. I know he has never forgotten us. Often, I <i>feel</i> very alone. But feelings can be wrong.</span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">I am never alone. And God never forgets. </span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">I had just reached a point so low that I was looking everywhere to hear from Him.</span><br />
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<h3 style="text-align: left;">
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;">Knocked Over</span></span></h3>
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">A tsunami rose up and knocked me over recently. Something happened that reminded me of the trauma of Lilli's birth. I cannot write publicly what it was that happened. But stuff like that comes up in life all the time. </span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">Reminders of the tough things we have been through.</span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">They sneak up and knock me over from behind, and sometimes I am okay. But sometimes it takes a long while to recover.</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">Those long recoveries are times when I am especially searching for hope to cling to. With this incident, both my husband and I were affected, and we found ourselves confessing feelings and thoughts about Lilli's birth that we had not yet shared in 12 years. There is always so much to process. I cried a lot, in the bedroom with the door shut. He understood. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">Lilli's birth was so traumatic that I still carry it with me. I still lay awake sometimes and think about it in the middle of the night. After 12 years. I still think about the things that went wrong. The things the doctor should have done or should not have done. The mistakes the hospital made. Her time in the hospital nursery when we were not with her (because I was in recovery from an emergency c section and my husband was taking turns being by my side and by her side) and she began to have seizures. I still think about all of it and the pain is still there. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">After all this time.</span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">You would think that the pain would have diminished even a little bit after all these years. And most days, it has. Most days, I do not think about it or dwell on it. Just sometimes it comes back to my mind. Some might tell me to let it go. But I think the opposite has happened. Because now I see what Lilli is like 12 years later. Because of who she is and what she is like, I still think about it. I have over a decade of perspective now. I did not know on the day she was born how very difficult her entire life would be. </span></span><br />
<span style="background-color: white;"><span style="background-color: lime;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">I just did not know.</span><span style="background-color: white; font-family: "arial" , sans-serif;"> </span></span></span><br />
<span style="background-color: white; font-family: "arial" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;">So when things are hard now, sometimes I think back to how it all began, with her difficult birth. To the start of the story that we are right in the middle of now.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;">Why did things happen the way they did? I know that God is big and that we do not understand his ways. I know that he has a plan specifically for Lilli and for our family throughout all of this. And I know that this side of heaven, I will never know why things happened this way. I continually have to come back to God and tell him that I trust him. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;">I do trust him. Even when everything is so hard. </span></span></span><br />
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<h3 style="text-align: left;">
Mind Wandering in the Grocery Store</h3>
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<span style="background-color: white; font-family: "arial" , sans-serif;">My heart has been especially broken lately. It hits me at odd times. One evening, I was in the bakery section of the grocery store by myself. I was looking at the french bread, and tears just sprang up without warning. </span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">The tears came because I had been trying to figure out yet another small mystery about Lilli, and it was heavy on my mind.</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">While pushing my cart past the banana display over to the french bread, I had been thinking about how earlier in the evening Lilli had pushed the word "bye" on her ipad several times. I didn't know what she meant. She had been upset with me. Was she being a snippy tween, telling me "Bye"? Like<i>, go away mom. Bye</i>. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">I had mentioned something about school and her friend, and then I thought, <i>was she trying to tell me something about saying goodbye to someone at school? To her friend?</i> </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">Maybe she didn't want to say goodbye. Maybe it's because she never got to say goodbye to her teacher, who suddenly quit last week with no warning, just before the end of the school year. (Another heartbreak). There are so many things that go through my mind when she pushes a button with just one single word. It kills me. It is the most frustrating thing ever. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">You might think that it was just an accident or maybe she was just pushing it for the heck of it. And maybe, yes, sometimes, maybe it is. But you would not be giving Lilli enough credit if you thought that all of the time. Lilli has so few words on her ipad to use. There is a neurological disconnect in her brain. She knows what she thinks in her mind. She cannot get the words out of her mouth and she cannot get her fingers to express it accurately by herself through a device. It is stuck in her mind, with no pathway out.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">How do I know this? Because when she has something to say, she puts her hand on her neck. All the time. Anyone who knows her well knows this. How can I describe it? It's as if you tie bandana over your child's face covering only their mouth, and then you ask them a question. They point to the bandana, as if to say,<i> I can't talk, I have a bandana over my mouth, remember? </i></span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">That's pretty much Lilli all the time.</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white;">Selfie with Lilli. I said, "Lilli, smile! Lilli, say cheese!"</span><br />
<span style="background-color: white;">I don't know why I always do that.</span><br />
<span style="background-color: white;">She can't say "cheese." Sometimes, she tries.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white;">This is right after I said "Say cheese!"</span><br />
<span style="background-color: white;">She's silent.</span><br />
<span style="background-color: white;">She's saying cheese, I think.. Internally.</span></td></tr>
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;">When she pushed "bye" several times, I sat there across from her at the table and I said, "Lilli, why are you saying bye?" Then I asked her more specific questions about it, trying to guess. </span></span><br />
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"></span><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;">But there is no button that says what she is thinking. </span></span><br />
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;">It could've been, "I want you to make a goodbye gift for the staff at school." Or, "I don't want to say goodbye to my friend." Or, "I never got to say goodbye to my teacher." </span></span><br />
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"></span><span style="background-color: white; font-family: "arial" , sans-serif;">She put her hand on her neck and looked at the floor, silently. It was no accident. She was trying to express a thought but she only had one word to do it. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;"><i>Bye</i>.</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">My heart. Hurts. Every time. </span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">Sometimes I get sad. Sometimes I get angry. Sometimes I get depressed. Sometimes I waste time questioning why things are this way. Sometimes I get motivated to try and make things better, or work on teaching Lilli something. Sometimes I steel myself against the hurt and just ignore it all to save myself from pain - her pain and my pain. Just move on. Do normal life things. Get up and put the dishes in the sink and act like she wasn't just trying to tell me something important and I will now never know what it was.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">This all happened last week - the something that happened that reminded me of Lilli's birth, and the crying near the french bread in the grocery store. And then came the morning when I got perspective from a lilli flower. And a dragonfly.</span></span><br />
<h3 style="text-align: left;">
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span><span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">The Lilies and the Dragonfly</span></span></h3>
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<span style="background-color: white; font-family: "arial" , sans-serif;">I was in the backyard with little 20 month old Nate.</span><span style="background-color: white; font-family: "arial" , sans-serif;"> I was watching him toddle all-around in the bright morning sunshine as I was trying to just keep myself together emotionally. It had been a tough morning and I was trying to keep from falling apart. The rest of my family had gone to church and I stayed behind because I was so upset.</span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">If you ever think you are too upset to go to church, you should make yourself go. You are probably missing a message that is meant just for you. Later, I found out I missed a message on finding joy in tough times. I wished I had gone to hear that message.</span></span><br />
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</span><a href="https://2.bp.blogspot.com/-sAIgvBahFlY/V1tW95fmpPI/AAAAAAAABBY/Zz1QqQ-mCWIPKib7NLbaL5jDTl4lkxvIQCLcB/s1600/image1%2B%25283%2529.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-left: 1em;"><span style="background-color: white; clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-sAIgvBahFlY/V1tW95fmpPI/AAAAAAAABBY/Zz1QqQ-mCWIPKib7NLbaL5jDTl4lkxvIQCLcB/s320/image1%2B%25283%2529.JPG" width="240" /></span></a><span style="background-color: white; font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span><br />
<span style="background-color: white; font-family: "arial" , sans-serif;">I stood in the yard and looked at all of the orange tiger lilies blooming. All around, blooming everywhere. </span><br />
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<span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">My Lilli was not named after the lily flower. She was named after my mom, whose name was Lillian. But most people called my mom "Lilli." She died when I was 13. Before Lilli was born, we had decided to name her Lillianna. We made it a little different, but still she has the same nickname as my mother. </span><br />
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<span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; font-family: "arial" , sans-serif;">Because of these two very special Lillis in my life, the lily flower has special meaning to me, and it has always been my favorite flower.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">As I stared at one beautiful bunch blooming in front of me, I noticed a dragonfly. Last year I gave beautiful bead and wire dragonfly ornaments to a couple of special people in my life. Someone had made them and had written the story of the dragonfly's life to go with it. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">One of those special people that I gave a dragonfly to was Lilli. </span></span><br />
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<a href="https://3.bp.blogspot.com/-85ldZwgcbKA/V4veWXwS2rI/AAAAAAAABFE/xMqPEuOaRNEA3-haSbOIZHftIRaYPrxLgCLcB/s1600/FullSizeRender%2B%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://3.bp.blogspot.com/-85ldZwgcbKA/V4veWXwS2rI/AAAAAAAABFE/xMqPEuOaRNEA3-haSbOIZHftIRaYPrxLgCLcB/s320/FullSizeRender%2B%25282%2529.jpg" width="320" /></a></div>
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">The dragonfly spends four years in the mud and muck before it finally crawls out and becomes a beautiful dragonfly. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">According to </span><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;">http://www.dragonfly-site.com:</span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><br /></span></span><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><i>"Once the dragonfly eggs hatch, the life cycle of a dragonfly larva begins as a nymph. A nymph looks a little like a little alien creature. It hasn't grown its wings yet and has what looks like a crusty hump hanging onto its back. Dragonfly nymphs live in the water while they grow and develop into dragonflies. This portion of the dragonfly life cycle can take up to four years to complete, and if the nymph cycle is completed in the beginning of the wintertime, it will remain in the water until spring when it is warm enough to come out."</i></span></span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-hmHVGwwVfqg/V11K5_y8nLI/AAAAAAAABCs/YiUEfn3TyHYiJ4P8ZIPWBCPqeOJtW-jdwCLcB/s1600/dragonfly-picture.jpg" imageanchor="1" style="background-color: white; margin-left: auto; margin-right: auto;"><img border="0" height="129" src="https://4.bp.blogspot.com/-hmHVGwwVfqg/V11K5_y8nLI/AAAAAAAABCs/YiUEfn3TyHYiJ4P8ZIPWBCPqeOJtW-jdwCLcB/s320/dragonfly-picture.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white;">Do you know how hard it is to get a good picture of a dragonfly? See mine below with the orange circle. a terrible picture! </span><br />
<span style="background-color: white;">Then do yourself a favor and google image photos of dragonflies. They are all spectacularly colored and different.</span></td></tr>
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><br /></span></span><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">I was standing still, looking at the dragonfly thinking about it and what it had to go through before becoming this beautiful huge green shimmering dragonfly on a leaf in front of my face. It makes the butterfly's metamorphosis seem like a short lovely trip down easy lane.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">The dragonfly was right next to the amazing, perfectly blooming orange tiger lilies. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">I looked at all of the tiger lilies, knowing all of the sudden deep in my heart that God had put them there just for me.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-g6znYx8Y4U8/V1tIiA1jKnI/AAAAAAAABBA/LIZPJEfMauEl1EMgr41lXoNHpgL3W-nZwCLcB/s1600/IMG_6726.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-g6znYx8Y4U8/V1tIiA1jKnI/AAAAAAAABBA/LIZPJEfMauEl1EMgr41lXoNHpgL3W-nZwCLcB/s320/IMG_6726.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The dragonfly was hard to find in this picture.<br />
I had to enlarge it and really search.<br />
I circled it above in orange. If you can't see<br />
it, trust me, it's there. Green and beautiful.</td></tr>
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">Some people believe that things like this happen in life by random chance. I guess that takes away from the magic of life doesn't it? Because I believe truly that it was meant to be that a person who lived in this house decades before me planted all of those dozens and dozens of tiger lilies. And for some reason, that person must have <i>really</i> loved lilies and didn't even know about the future people who would live in this house....us. With a little girl named Lilli.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">But I believe God was thinking about the future.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">I believe God knew that a little girl named Lilli would be living in this house one day many years later. </span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">Blooming there. </span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">And God knew that the little girl's mother would need to be surrounded with signs of hope. Signs that she needs to just keep trusting. And keep hoping. Signs that God has not forgotten her and her daughter. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">That person could've planted anything. Tulips. Daffodils. Hyacinths. They could've mixed it up a little and planted a little bit of everything. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">But no. </span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">Only lilies. Just lilies. Everywhere. </span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span><span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">Consider the Lilies</span></span></h3>
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<span style="background-color: white; font-family: "arial" , sans-serif;">Sometimes you hear Bible verses your whole life, but you don't really think about them deeply until one day, bam, there it is right in front of your face. Real and genuine as can be, deeply meaningful. </span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">There's that verse in Matthew 6:28 that talks about lilies and how we should not worry.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;"><b> <i>"Consider the lilies of the field, how they grow: they do not toil or spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. </i>"</b></span></span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-UURiwlfMhN0/V1tXYaufAiI/AAAAAAAABBg/wzyR8SJQH90kIp0IE4FSnsZocf6YHhYpQCLcB/s1600/image2%2B%25282%2529.JPG" imageanchor="1" style="background-color: white; clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-UURiwlfMhN0/V1tXYaufAiI/AAAAAAAABBg/wzyR8SJQH90kIp0IE4FSnsZocf6YHhYpQCLcB/s320/image2%2B%25282%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white;">Lilies along the side yard next to the deck.</span></td></tr>
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<span style="background-color: white; font-family: "arial" , sans-serif;">I've heard that verse a hundred times. And yet there I was, standing in my own backyard staring at dozens and dozens of lilies. And I was truly <i>considering</i> them for the first time ever. </span></span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">That verse is talking about not worrying, because God will take care of our needs. It is part of a bigger passage about not being anxious or worrying about anything at all.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-e_mYBflK1K4/V1tXjCuZrII/AAAAAAAABBo/GMCnRlUKlN4Bu9srdNlWW4aGaBonyGC_ACLcB/s1600/image3%2B%25282%2529.JPG" imageanchor="1" style="background-color: white; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-e_mYBflK1K4/V1tXjCuZrII/AAAAAAAABBo/GMCnRlUKlN4Bu9srdNlWW4aGaBonyGC_ACLcB/s320/image3%2B%25282%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white;">All along the back of the yard. </span><br />
<span style="background-color: white;">I could not even fit the whole row in the picture.</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">The lilies, they really don't worry. They don't need anything. And they are beautiful.</span></span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">I didn't plant those lilies. Somebody did. But after they planted them, I guarantee they never did another thing to help them grow or flourish.</span></span><br />
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<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">Last year, our first spring in our new home, we looked around the yard at all of these green leaves sprouting up and my husband said, "I think those might be lilies!"</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">I said, "If those are all lilies, then I am going to cry because that will be amazing."</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">And then they bloomed. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">They all bloomed and I was overjoyed and brought to tears by their beauty and the crazy coincidence that my mom's name was Lilli, and my daughter's name is Lilli, and my favorite flower is a lily.</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">But <i>consider these lilies</i>. I never did anything to these lilies in my yard. We did not water them even one time. We did not weed around them or prune them or fertilize them or anything. They just came up, and they bloomed beautifully all on their own. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">God takes care of the lilies. </span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;"><b>And God takes care of <i>my</i> Lilli.</b></span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;">There I stood, "considering the lilies." </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">I am so worried about <i>my</i> Lilli, and I so want her to be able to do certain things.I get anxious and impatient all the time, with all the waiting and with how long everything takes for her to learn.</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">If I had stood in front of those flowers in March, crying and hoping and wishing for them to bloom and open right in front of me, they would not have opened. Because they were not ready. They were not to open until late May. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">Even in April, knowing how close we were to May and summer, had I stood in front of them and hoped and prayed and wished for them to bloom, they would not have bloomed. Because it was not time yet. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;">That made me consider my own Lilli. God's timing is not my timing. Just because I wish and pray for her to do things right now on her own, well, it's not up to me. If I had known that it was going to take Lilli seven years to learn how to pedal a bike, would I have kept trying to help her learn after one year? Even after six months? Seven years is a really long time.</span></span><br />
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<span style="background-color: white; font-family: "arial" , sans-serif;">It has taken Lilli a very long time to bloom. She is still blooming, and many things in her life are still just a seed. </span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>18 months to learn to crawl.</i></b></span></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>3 years to learn to walk.</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>5 years to learn to run.</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>7 years to learn to jump.</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>8 years to learn to kick her legs in the pool and move around in an inner tube</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>6 years of feeding therapy to go from baby/puree foods to chewing regular food. </i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>6 years to learn to go up or down steps.</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>7 years to learn to pedal a bike.</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>8 years of potty training and counting...</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>11 years of physical therapy</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>9 years of speech therapy</i></b></span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><i>10 years of occupational therapy.</i></b></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><br /></span></span>
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;">Yes, we are worn out. Keeping our chins up all the time is really exhausting. </span></span></span><br />
<span style="background-color: white;"><span style="background-color: lime;"><br style="font-family: arial, sans-serif;" /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">God is taking care of Lilli. And she IS blooming. She is blooming on God's schedule for her, and God's timing is perfect. In some ways, she might be a little bit like the dragonfly right now, with some things hidden and stuck in the mud. But I have to keep having hope. I have to wait and not worry.</span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-FRkQ0a3CB0U/V11igzvMcFI/AAAAAAAABD0/6M7bLITySl8d8e3pToX7osyNcKTjJ8mMgCLcB/s1600/13391550_10210152539754995_5851355198037661773_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://4.bp.blogspot.com/-FRkQ0a3CB0U/V11igzvMcFI/AAAAAAAABD0/6M7bLITySl8d8e3pToX7osyNcKTjJ8mMgCLcB/s320/13391550_10210152539754995_5851355198037661773_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Most of my friends have seen this on facebook. <br />
This is Lilli on her new bike. Pedaling it herself. It really did<br />
take seven years of people manually pushing her feet around on the pedals for<br />
her to get the motor memory for how to pedal by herself.</td></tr>
</tbody></table>
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<br />
<a href="https://1.bp.blogspot.com/-6NczIEY12F0/V4vfH54tFdI/AAAAAAAABFI/P0yH5mIM6BUbUNuLFGqQM3C5ORzEUfmSQCLcB/s1600/IMG_7377%2B%25281%2529.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://1.bp.blogspot.com/-6NczIEY12F0/V4vfH54tFdI/AAAAAAAABFI/P0yH5mIM6BUbUNuLFGqQM3C5ORzEUfmSQCLcB/s320/IMG_7377%2B%25281%2529.JPG" width="320" /></a><span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><br /></span></span><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"></span></span><br />
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<span style="background-color: white;"><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">This verse I love:</span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="background-color: white; font-family: "arial" , sans-serif;"><b> "He has made everything beautiful in its time." (Ecclesiasties 3:11)</b></span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;">In time, we will see the beauty. In time, we will know. Right now, I only know in part. One day, we will know the end of the story.</span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b><br /></b></span></span><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><b> "For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known." Corinthians 13:12. </b></span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><br /></span></span>
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;">I need to hear this, so I am reminding myself. I am writing it out so that I can remind myself again and again. But maybe someone else that is reading this needs to be reminded of this too. This is not your typical message about waiting on the Lord. This is about agonizingly long waiting. </span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><br /></span></span>
<span style="font-family: "arial" , sans-serif;"><span style="background-color: white;">Many. many, long years of waiting. </span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"><br /></span></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">I hope that through my struggle and story about waiting and continuing to look for hope, you find hope too.</span><span style="font-family: "arial" , sans-serif;"><span style="background-color: white;"> </span></span></span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;">When you are searching for hope in the long-waiting, remember the dragonfly. </span></span><span style="background-color: white; font-family: "arial" , sans-serif;">Sometimes, good things take a really long time. </span><span style="background-color: white; font-family: "arial" , sans-serif;">Think of the dragonfly nymph, spending years in the mud before if finally emerges with wings shimmering and beautiful, dancing in the air with more agility than a helicopter and more grace than a ballerina.</span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span>
<span style="background-color: white; font-family: "arial" , sans-serif;"> And look for the "lilies" along your way. The reminders that you are not alone. God is here. </span></span><span style="background-color: white; font-family: "arial" , sans-serif;">He knows the end of the story, because He wrote your story long before you were born. </span><span style="background-color: white; font-family: "arial" , sans-serif;">Hang on a little longer, have faith, and have hope. </span><br />
<span style="background-color: white;"><span style="background-color: white; font-family: "arial" , sans-serif;"><br /></span></span>
<br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><br /></span></span><span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-uCWuJO8876s/V11iFbZMB-I/AAAAAAAABDs/cYOA00oJb9IFuVHn2XxkjDQmGrSEohMawCLcB/s1600/IMG_6841.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://2.bp.blogspot.com/-uCWuJO8876s/V11iFbZMB-I/AAAAAAAABDs/cYOA00oJb9IFuVHn2XxkjDQmGrSEohMawCLcB/s320/IMG_6841.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A bunch in another corner of the yard.</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-_kOIlaon5w4/V11iFSLUXGI/AAAAAAAABDo/lFm0yi2HaSYHp2nKvV7jNzYj5mR6-bppQCLcB/s1600/IMG_6844.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-_kOIlaon5w4/V11iFSLUXGI/AAAAAAAABDo/lFm0yi2HaSYHp2nKvV7jNzYj5mR6-bppQCLcB/s320/IMG_6844.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lilies all along the back</td></tr>
</tbody></table>
</span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a auto="" href="https://1.bp.blogspot.com/-9ocyfnxchQA/V11iDysj3dI/AAAAAAAABDg/3onvUUcziFA49004ILgPmorG_NRYa-3BACLcB/s1600/IMG_6842.JPG" imageanchor="1" margi="" margin-right:="" style="background-color: whiten-left:=;"><img border="0" height="320" src="https://1.bp.blogspot.com/-9ocyfnxchQA/V11iDysj3dI/AAAAAAAABDg/3onvUUcziFA49004ILgPmorG_NRYa-3BACLcB/s320/IMG_6842.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lilies up the driveway</td></tr>
</tbody></table>
<span style="background-color: lime;"><span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><br /></span></span>
<span style="font-family: "arial" , sans-serif;"><span style="font-size: 13.3333px;"><br /></span></span></span><span style="font-family: "arial" , sans-serif;"><span style="background-color: white; font-size: 13.3333px;"><br /></span></span>
</div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com5tag:blogger.com,1999:blog-6544187541488651945.post-80931660132390478412016-05-24T14:02:00.002-04:002016-05-24T14:02:15.550-04:00Turning Twelve<div dir="ltr" style="text-align: left;" trbidi="on">
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<b><span style="font-size: large;"><i>January 2016</i></span></b><br />
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<a href="https://3.bp.blogspot.com/-weQPXs-81LU/V0SRarb5mEI/AAAAAAAABAI/oJNMig279HkzMK8y-VGHd1xOKn3SS122gCLcB/s1600/IMG_4979.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-weQPXs-81LU/V0SRarb5mEI/AAAAAAAABAI/oJNMig279HkzMK8y-VGHd1xOKn3SS122gCLcB/s320/IMG_4979.JPG" width="240" /></a></div>
Lilli turned twelve.<br />
<br />
The party was six days ago, but three shriveled pink
balloons still dangle from our front porch light. Light pink crepe paper is
still stretched across the dining room and a gold star hangs in front of the
window. This is typical for our family, to leave decorations up for a week after a birthday. We put them up early and take them down late. It only comes once a year, so we drag it out.</div>
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It was my favorite birthday of Lilli's so far. </div>
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There
have been other great birthdays. There have been quiet birthdays, I remember one birthday when I felt certain that she was disappointed, but she could not tell me specifically why. </div>
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<a href="https://4.bp.blogspot.com/-3Ild3NswOnc/V0SRe-mJgbI/AAAAAAAABAM/4lQ4LsnsCY0cty8OAVZzG3fAKO_CEdPNQCLcB/s1600/IMG_4981.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-3Ild3NswOnc/V0SRe-mJgbI/AAAAAAAABAM/4lQ4LsnsCY0cty8OAVZzG3fAKO_CEdPNQCLcB/s320/IMG_4981.JPG" width="240" /></a><br />
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I remember another birthday when we figured out too late why she was unhappy with how we celebrated. It turned out okay, but she had a few moments of sadness that made me feel bad.<br />
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There was the birthday when I made her a black bean brownie cake. I was trying to find a gluten free alternative, and that was one of my early attempts.<br />
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It tasted awful.</div>
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Lilli has learned how to be a good sport about things. She has been misunderstood and misinterpreted for years. Can you imagine if someone else chose for you how you should celebrate your birthday each year? </div>
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Imagine you are turning twelve. Say you decide in your mind you want a rainbow cake with purple incing, and you want to watch a movie with your friends and have lots of purple and silver balloons.<br />
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But you cannot talk. </div>
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Your mom says, "Do you want a white cake or a chocolate cake?" Which does not help, because you do not want either of those choices. You want a rainbow cake. She puts the vanilla and chocolate choices on the ipad, and asks you to touch the choice you want. So you are forced to pick between two things you don't even want. </div>
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You pick vanilla.</div>
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<a href="https://2.bp.blogspot.com/-t1JSEFBHqog/V0SR_ejDOVI/AAAAAAAABAQ/ZjWaTCyAUdwctFaKo2TXiHZcYC_LQvbuwCLcB/s1600/IMG_4982.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://2.bp.blogspot.com/-t1JSEFBHqog/V0SR_ejDOVI/AAAAAAAABAQ/ZjWaTCyAUdwctFaKo2TXiHZcYC_LQvbuwCLcB/s320/IMG_4982.JPG" width="320" /></a>Then your mom holds out pink streamers and white ones that say "Happy Birthday" on them as a choice. Those were the ones we had left in the birthday decoration box. There are two gold stars from Christmas. "How about pink streamers and gold stars?" Your mom asks. "Yeah! Pink and gold!" your little sister shouts. Your little brother starts talking about HIS birthday and what decorations HE wants, yet his is over a month away. </div>
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Your mom googles "pink and gold stars tween birthday" and comes up with some amazing party pinterest pictures that she could never duplicate.<br />
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<i>Oh well, this will just be like every other year. My mom will throw a party that is different than what I want, but I can't tell her what I really want. </i></div>
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<a href="https://2.bp.blogspot.com/--Qk_K-hiWhM/V0SRS10fTVI/AAAAAAAABAE/cn3J4-GuGEoVvYqnXKxSL5F4ZQGy032egCLcB/s1600/IMG_4870.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/--Qk_K-hiWhM/V0SRS10fTVI/AAAAAAAABAE/cn3J4-GuGEoVvYqnXKxSL5F4ZQGy032egCLcB/s320/IMG_4870.JPG" width="240" /></a>This is what I imagine Lilli thinks to herself. I try very hard to guess, but it will never be the same as my other kids, who get to imagine exactly what they want and we create the party together, through lots of detailed conversation.<br />
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Lilli seemed okay with the decorations and the plans. I think she liked her cake. I tried to make it "Twelve Year Old" ish, based on some tween birthday cakes I saw online. I could not give her the Pinterest, long table with perfect decorations and tablecloth, party favors and huge outdoor tween party with hanging tissue paper flowers and twinkle lights. Pinterest sets the bar too high for average moms like me. But it was still nice.</div>
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Every year we get a little better, I think. I've been able to give Lilli choices and have her point, touch, or use the ipad to choose. But I know that the choices I give her might not include the choices she has in her mind, and that frustrates both of us. </div>
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The ipad has given us new freedom. But that freedom is still very limited.</div>
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I did what made sense, and I did what was "do-able" for our family that would work for Lilli's anxiety with new situations and groups of people.</div>
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<i>How does any twelve year old girl want to spend her
birthday?</i> I thought. I tried to remember back to when I turned twelve. </div>
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<i>A twelve year old wants to spend a birthday with her girlfriends</i>. Every year up until now, Lilli has not had any friends to invite. Oh there have been a few children here and there from classes at school or church, but never one specific child who reached out to Lilli with purpose and pure friendship, no strings attached.</div>
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Until this year.<br />
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This year, Lilli had three friends to invite. A good friend from school who calls Lilli her "BFF."<br />
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...Pause for just a moment and cry for joy with me about that.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-cnfRV89xv04/V0SSvkokGuI/AAAAAAAABAY/rN3rmL1GeIsXYd6_kxmsOpsnsc4KUBBbACLcB/s1600/IMG_4921.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="278" src="https://2.bp.blogspot.com/-cnfRV89xv04/V0SSvkokGuI/AAAAAAAABAY/rN3rmL1GeIsXYd6_kxmsOpsnsc4KUBBbACLcB/s320/IMG_4921.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These girls....hearts of pure gold and awesomeness.</td></tr>
</tbody></table>
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And two girls that are neighbors and good friends to all of our children, and they include Lilli and invite her to play. </div>
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We cleaned the house and decorated. We invited just the two families - just the girls and their parents. Moments before the party was to begin, Lilli walked into the kitchen as my silly bird clock tweeted. I was wiping the counter and making sure we had all the food on the counter ready.<br />
<br />
"There's the two o'clock tweet, Lilli, were you just waiting for that bird to tweet so that you know your party is starting and your friends are coming?" Lilli put her hand on her neck to answer me and smiled and jumped. She was making happy sounds and chattering away in her mysterious "Lilli language" until the first family arrived.<br />
<br />
As soon as they walked in, Lilli got anxious.<br />
<br />
Her happy sounds turned to upset sounds and she began to drag people around, "asking" them to give her the iphone she uses to watch her favorite Youtube videos. She began to cry. Her sounds of distress increased and my distress and anxiety began to appear too. I <i>so</i> wanted her to love this celebration in her honor.<br />
<br />
Finally, she went to the back door like she wanted to go outside. My husband opened the door for her and she went out into the carport and climbed into the mini van. She sat in the van, in her seat. Trying to calm herself down. This is one of the ways Lilli tries to calm herself, by getting into her seat in the van. Maybe it feels safe and quiet in there, I'm not sure why she does that.<br />
<br />
When your non verbal special needs child has extreme anxiety, you try a lot of things to help them.<br />
<br />
Sometimes you do weird or unconventional things. Sometimes you do things you don't want to do. Sometimes you do things you would never let your other typically developing children do, and it's unfair.<br />
<br />
My husband and I had a quiet consultation in the corner of the kitchen and decided against our wishes to give Lilli the iphone. Here's the thing about the iphone.<br />
<br />
We hate it.<br />
<br />
But it helps Lilli calm down as she gets lost in her world of repetitive Muppet Show and Sesame Street clips on youtube. And this was her day. Her party. Did we want her to sit out in the van, anxious, during the whole party?<br />
<br />
As soon as we gave Lilli the phone, she was happy to come in and be with everyone. She was all smiles. She leaned in and gave hugs and was completely fine.<br />
<br />
She had her iphone "security blanket" in her hand, and she was able to function socially.<br />
<br />
I don't really get it, but I don't really get Lilli sometimes.<br />
<br />
So, all of the pictures from the wonderful, happy party have Lilli with her iphone playing YouTube.<br />
She sat on the couch next to her BFF from school and watched as the presents were opened for her and we all exclaimed over them. She got all twelve year old appropriate gifts. A cool pillow for her new bed. Hair accessories. Cool clothes. An MP3 player.<br />
<br />
<br />
She was all smiles and laughs.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-EN4YPd-1eLs/V0STl0pU60I/AAAAAAAABAo/KMVMQ4sppPozuNeQs6lmpv1CA9qROpwQgCLcB/s1600/IMG_4922.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="308" src="https://1.bp.blogspot.com/-EN4YPd-1eLs/V0STl0pU60I/AAAAAAAABAo/KMVMQ4sppPozuNeQs6lmpv1CA9qROpwQgCLcB/s320/IMG_4922.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You know you are loved if you are put into a "Lilli headlock."</td></tr>
</tbody></table>
It was an amazing day for Lilli, because she participated in her entire birthday celebration, happy the entire time. I wish she didn't feel like she needed the iphone to calm herself down in unfamiliar, unpredictable situations.<br />
<br />
But life is one step at a time, for Lilli and for us as her parents.<br />
<br />
We will figure out another way for Lilli to calm herself. And I will smile at the pictures of her birthday despite the iphone, because it was a great birthday.<br />
<br />
Lilli has friends now. The best present of all.<br />
<br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-26567468809667924222016-03-23T10:39:00.000-04:002016-03-23T10:39:15.161-04:00Getting Dressed<div dir="ltr" style="text-align: left;" trbidi="on">
Dressing a baby is so easy.<br />
<br />
When you have a baby, you get all the fun of picking out little adorable outfits. Lacy dress? <i>It's adorable. You're wearing it for a picture. Oh, what, you hate it? Too bad, you look like a doll baby</i>. <i>Now endure my attempts to make distracting noises at you as I snap 35 pictures and post the best one on facebook.</i><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-xT7bLrX8VVQ/VpfUa3CcgEI/AAAAAAAAA-A/z3tVH5g_dvs/s1600/FullSizeRender%2B%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="264" src="https://1.bp.blogspot.com/-xT7bLrX8VVQ/VpfUa3CcgEI/AAAAAAAAA-A/z3tVH5g_dvs/s320/FullSizeRender%2B%25281%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Isn't this the best picture? Baby Chloe in a lacy dress, her first moments home from the hospital. Do you think she likes her dress? Lilli's like, uh, what's with that angry baby in a frilly dress over there?</td></tr>
</tbody></table>
<br />
Dressing children as they get older? Not so easy to control.<br />
<br />
Yesterday, we all got dressed for church, and this is what that looked like:<br />
<br />
Nate, the 1 year old: we picked out his clothes and dressed him. Obviously. Nothing fancy for that little guy, though. He's the fourth child. I chose a shirt that didn't have food stains on it and socks he wouldn't be able to pull off very easily. Moms of multiples, you know where I'm coming from.<br />
<br />
Josh, the 5 year old: very picky about his clothes, he chose pants that he feels comfortable in and a shirt he likes, and he put on his own clothes. Do orange and navy stripes go with black pants? Who cares! It feels good.<br />
<br />
Chloe, the 9 year old: chose a dress that was inappropriate for the weather, (a sundress of course) argued about it, came up with a compromise, and came out wearing a sweater dress and leggings that she chose and put on herself. Also chunky heeled white sandals. White sandals. In October. With a sweater dress...because they have "heels."<br />
<br />
I let her. I remember fighting with my own mother about clothes and shoes when I was 9. Some things you just have to let go.<br />
<br />
Then we have Lilli. Lilli is older than Chloe, so why wouldn't she care about her clothes and shoes? She cares. But she won't go in her room and pick out her clothes and dress herself. She can't even put her own shirt on.<br />
<br />
The most important thing about Lilli that I've learned over the years is that she has parts of her that are age appropriate. Those parts are on the inside. It was never so evident until the most recent years when we finally discovered that she really does care about certain age appropriate things. Yes, she still plays with Dulpo Legos and puts them in her mouth. Yes, she still watches Veggie Tales, Sesame Street and even Baby Einstein. They are comforting to her. I don't know, maybe she will always watch them. She likes sameness. Some things in her life are still very babyish.<br />
<br />
But that does not mean that Lilli is a baby. Or that she should be treated like a baby.<br />
<br />
One thing that has always irked me as a special needs mom is how she underwent assessments in the early preschool years, which deteremined that she was on a cognitive level of 18 months...or something like that. Maybe it was 15 months. Whatever the level, it was extremely low. After 11 years, I have more wisdom about this. No one ever said to me, "Your daughter might have a level of 18 months for SOME things, maybe even most things but not <i>all things</i>. Treat her like you would treat other children her age, and accommodate appropriately. Talk to her age appropriately. Dress her age appropriately. Introduce age appropriate toys, music, and interests. Start at her age and work backwards."<br />
<br />
That would have helped me out a lot. I am still working on this. I am still not good at it.<br />
<br />
I am finally catching up on how she wants to pick out her own clothes. She wants to choose which necklace she wants to wear, she wants to choose how she wants her hair to look, and she wants to choose which hair accessory I put in her hair. She cannot <i>brush</i> her own hair, but she still cares a lot about what it looks like. She cannot put on a sweater, but you'd better believe she cares about what that sweater looks like.<br />
<br />
The new speech therapist has helped us simplify a method of having her be in control of choosing what she wears. We used to have all of her outfits and jewelry on her ipad, but it was still overwhelming with way too many choices. Now, I pick out two or three things, and give her the ipad. She can tell me if she approves or not. If she doesn't approve, I go get more choices.<br />
<br />
My husband went through her drawers and picked out an outfit that she hadn't worn since last winter. The weather was cooler, and we were pulling out long sleeves for the first time. He put the clothes - a white seqinned shirt, black capri leggings and a black frilly skirt - down on the table in front of Lilli and said to me, "This is her outfit, is that okay?"<br />
<br />
"I don't know, ask her." I said.<br />
<br />
This is the new routine now, that we do every school morning. It is time consuming. But so necessary.<br />
<br />
"Do you want to wear this?" he asked her. He pointed at the outift on the table in front of her and held the ipad out for her to see.<br />
<br />
"I don't want to wear that." She answered immediately.<br />
<br />
<i>Okaaaay....</i><br />
<i><br /></i>
<br />
"Get a pair of jean jeggings, she's into those right now," I told him. "I'll get them." I went back to find her favorite pair and when I brought them out, my husband had put the white sequinned shirt on her.<br />
<br />
"Wait, did she say she wanted to wear that shirt?" I asked as I handed him the jeggings.<br />
"I don't know, I just put it on her," he answered, getting frustrated with this girly outfit stuff.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-NzDkg18nEpk/VpfVDMuqexI/AAAAAAAAA-M/7e7pN9p4TrM/s1600/image2.JPG" imageanchor="1" style="clear: left; font-size: 12.8px; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="300" src="https://4.bp.blogspot.com/-NzDkg18nEpk/VpfVDMuqexI/AAAAAAAAA-M/7e7pN9p4TrM/s400/image2.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dad, see? That shirt is so, like, last year.</td></tr>
</tbody></table>
"Middle schoolers don't wear those kind of skirts with leggings anymore, they just wear the leggings, she doesn't want to wear stuff like that anymore. Ask her about the shirt," I said.<br />
<br />
"I don't want to wear that." Lilli pressed on her ipad.<br />
<br />
My husband threw his hands in the air and said "I give up, you do it,"<br />
<br />
That made me laugh but he doesn't know what she would want to wear. I am not good at fashion but I'm trying really hard. Everytime I go to the middle school, I look at what the other kids are wearing. Last week I went clothes shopping for Lilli - without Lilli. This is challenging because it would be easier hypothetically to have Lilli touch and choose which clothes she liked right there in the store, but we have had way too many overwhelming shopping meltdown experiences. The sensory overload of the store with the lights, sounds, smells, and unexpectedness of it all with people walking past, unfamiliar terrain walking around clothes racks and displays....it is too much for Lilli.<br />
<br />
So I now bring home choices and ask her. If she likes them, we keep them. If not, I return them. So much easier than a meltdown for Lilli and anxiety and stress for me and other people in the store.<br />
<br />
I asked a salesperson for help. She happened to have a middle school aged daughter, bonus! I asked her what her daughter would pick out if she went shopping there. She pointed at a wall of regular jeans.<br />
<br />
"Well, I'll tell you what they DON'T wear, they don't wear these," as she swept her arm over the whole wall.<br />
<br />
<i>Good to know. I did not know that regular cut jeans are currently "out." I wish Lilli could tell me that kind of stuff, </i>I thought. She directed me to other racks with skinny jeans and leggings, and outfits she has seen other middle schoolers purchase recently. But also, I wonder, do middle school kids think it's "cool" to buy clothes at Walmart? <i>One thing at a time, one thing at a time.</i><br />
<br />
There is a lot of guess work going on here, trial and error. Lilli's teacher asked me once how Lilli got her sense of fashion and how we knew how to dress her.<br />
<br />
"She has had some hip therapists in the past few years, and several therapists and a teacher who bought her clothes and helped her pick things out," I answered. "She has people buy her cool clothes all the time."<br />
<br />
It's true. Her ABA therapist, her homebound teacher, her speech therapist, even the ABA therapist's supervisor...all have bought Lilli cool clothes. They could tell I was fashion-challenged.<br />
<br />
I take no credit. The store "Justice" has been a big help, even though it irritates me with its high prices, trite slogans and loud music. (I must be in my 40s.) But now, of course, I wonder if she will move onto another store brand, because do middle schoolers wear Justice clothes? I really do not know. I think not. I hate brand names. My brand names are Good Will, TJ Maxx, and anything black. Truly. Black is simple and goes with anything....except maybe navy, but I'm not even absolutely positive about that one. And maybe brown? I honestly do not know. If you feel so inclined, please comment below and tell me if black goes with navy or brown. Thanks.<br />
<br />
Anyway. I went back to Lilli's clothes and got a new sweater she'd just received as a gift from a hip relative who knows what's cool to wear. She's much more up on style than I am, I trust her. I also grabbed a long tank top from Justice to go under the sweater.<br />
<br />
"Here, what do you think of this?" I asked Lilli as I held it out to her.<br />
<br />
"I like it." she pressed.<br />
<br />
Score. I put the tank and sweater on her, and then we had to discuss her hair and jewelry. Would we be late for church because of this? Oh yeah.<br />
<br />
She pressed the button for ponytail and pointed to a sparkly butterfly clip that I held out to her. We went to look at her necklace collection, and that took forever. I held each necklace out to her and she pushed, "no, I don't want to wear that one." Six times.<br />
<br />
Finally I held out a pink starfish pendant that we'd bought at the beach. "That's the one I want," she pressed.<br />
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<a href="http://1.bp.blogspot.com/-eKlySjaHVcM/VpfWCXjqgLI/AAAAAAAAA-w/IOwTeZINgI0/s1600/IMG_2893.JPG" imageanchor="1"></a><br />
When she was done being dressed, I made a big deal and said, "Lilli, you look so fabulous in that outfit, you just have to look at yourself in the mirror. Come on."<br />
<br />
I walked her to the full length mirror we have in the hallway. Lilli doesn't look at herself in the mirror like Chloe and Josh do. They spend lots of time studying themselves. Lilli will glance quickly and look away. She smiled and I watched her as her eyes darted around the hall, everywhere but the mirror. This is autism. I wonder sometimes if she sees life like we see a kalidoscope. I have read that looking straight at things can even almost hurt to someone with autism.<br />
<br />
"Come on, look at you!" I encouraged her. I pointed at the mirror. "Look!"<br />
<br />
Her eyes flickered over for half a second at her own image in front of us, and immediately looked at the wall. But she had seen. She smiled and put her hand on her neck to show she wanted to say something. Whatever that something was, I don't know. She only has so many choices on her ipad right now, and we have put the facilliated typing aside for a long time now due to focusing on having her use the ipad completely independently, without being touched or guided.<br />
<br />
Now she was ready to go. Annnnnd we were going to be late.<br />
<br />
But it was so worth it to see her smile.<br />
<br />
And that's how we dress a non verbal 11 year old middle schooler.<br />
<br />
<a href="http://3.bp.blogspot.com/-jD1hTnGevE4/VpfVtAXtycI/AAAAAAAAA-Y/jLiYMeF0L30/s1600/IMG_2850.JPG" imageanchor="1"><img border="0" height="400" src="https://3.bp.blogspot.com/-jD1hTnGevE4/VpfVtAXtycI/AAAAAAAAA-Y/jLiYMeF0L30/s400/IMG_2850.JPG" width="300" /></a><br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-55659846413707577922015-11-15T07:45:00.000-05:002015-11-15T07:45:20.393-05:00Let Me Be a Part of It<div dir="ltr" style="text-align: left;" trbidi="on">
<h3 style="text-align: left;">
September 2015</h3>
<br />
I picked up Lilli from school and she was silent, unsmiling.. "She didn't want to work today," the teacher told me. She climbed into her special needs carseat and stared ahead.<br />
<br />
This was the third day in a row I had come to pick her up and hear this news.<br />
<br />
What was going on? She had been having wonderful days every week. School had been a complete turnaround since this time last year. It had been so good every week until now. I didn't get it. It was something about <i>this week</i>. Something was bothering her but as usual, I had to be a mystery detective to figure it out.<br />
<br />
On Thursday, same thing. Only, in addition to not doing her work, the teacher informed me that at lunchtime Lilli took her arm and swept her entire lunch and ipad off the table onto the floor. He said she wasn't upset, There was no crying or anger. She just purposefully swiped everything onto the floor. It's not like her at all. She never does that. So uncharacteristic of her. The teacher told me if it had not been witnessed by the assistant teacher, he never would've believed it. We wondered together if this was part of hormones and middle school general moodiness and angst.<br />
<br />
I lectured her on the way home about how <i>everyone has to do work even when they don't feel like it, and why would you throw your lunch on the floor? I'd better not ever hear of you doing that again..</i>.etc.<br />
<br />
She looked out the window solemnly.<br />
<br />
Now that she is in 6th grade, I am more aware that there are factors I need to consider for her moodiness, such as hormones. This is new territory for me. Since she is our oldest, we are navigating through puberty with a child for the first time. As tricky as it can be for any parent, I'm especially stumped because Lilli has so many other factors going on, such as being non verbal, having physical limitations, and seizures. So how am I to know what is going on? If it was hard before, it's much harder to figure her out now that she is a "tween."<br />
<br />
On Friday morning, I dropped Lilli off at school and noticed that the teacher was wearing a shirt that was out of character for him. He typically wears the same type of thing every day. "What's with the shirt today?" I joked. I feel comfortable picking on him because he always wears a black tee shirt and jeans. And I usually wear a black shirt and jeans. (Although since this has come to my attention, I have seriously tried to branch out to greens and blues in the last year). We who are fashion-challenged have to stick together.<br />
<br />
"It's dress like a decade from the past day" he explained. A flashback Friday kind of thing.<br />
<br />
"Oh...I didn't know," I said, feeling kind of bummed. "I would totally have dressed Lilli up for it."<br />
<br />
"Oh does she like to do that?" he asked.<br />
<br />
"Yeah, well, she doesn't like to wear certain things...like hats...but yes, she likes to be a part of stuff like that..." I was feeling bad and wondering if this was going to be an issue today.<br />
<br />
I mentioned that I'd noticed there seemed to be a lot of dressing up in the past few days, and he explained that this week was "Spirit Week." Every day there was a special theme and the kids were supposed to dress for that theme.<br />
<br />
"Yesterday was color war day, and the 6th graders wore gray, the 7th graders wore blue, and the 8th graders wore white."<br />
<br />
"Oh..." I thought about it. School colors. <i>I'd dressed her in hot pink yesterday. That was the day she swiped her lunch onto the floor.</i><br />
<br />
I looked at Lilli. "Lilli, is that why you were mad yesterday? Because you were wearing the wrong color and you couldn't tell me?" Up until this point, Lilli had been sitting silently, with no emotion, in her seat with the van door open while we stood outside next to her and talked. All of the sudden, a huge smile spread across Lilli's face and she reached over to me, grabbed my face and then grabbed my head. She pulled me toward her in a tight headlock hug and squeezed me, hard, while making a breathy sound that I can describe as kind of a smiley sniff. That's one of her happy noises.<br />
<br />
<i> Huh. That must've been it, </i>I thought. There is no question to those who know Lilli well, that she is always listening to conversations. Her timely reactions like this are meaningful and appropriate.<br />
<br />
Dressing up for Spirit Week. This kind of stuff is important to a 6th grader, special needs or not. I felt completely sad and guilty, even though I had no idea, and sorry for her in yet another situation where she had no control.<br />
<br />
"Well, she looks great today, hey Lilli, I like your outfit!" the teacher complimented. Even though he's not into adult fashion, he can appreciate middle school fashion and knows it is important to Lilli.<br />
<br />
Lilli wasn't super smiley as she walked through the door with her teacher, but she seemed okay. I said goodbye to her and drove off. But as I drove home, I thought about the whole week. And I teared up.<br />
<br />
It was so unfair, that she went to school each day all that week and knew it was Spirit Week and that each day had a theme, but she had no way to tell me. She can only tell me a limited number of things on her ipad. Most of our communication is through yes or no questions. I had no idea to ask her anything about dressing up.<br />
<br />
My tearfulness turned to focused determination and I gripped the steering wheel tightly. I realized I needed to go home and get Lilli an outfit, and go straight back and dress her up. I began to think of an idea using what I knew we had at home. By the time I walked into the kitchen, I had a plan. My husband looked at me and knew something was wrong. I explained, and told him I was going to get some things and go right back to the school.<br />
<br />
"Go," he agreed.<br />
<br />
When I arrived with my bag of stuff, I looked carefully at other students who were walking through the halls. I saw a lot of tye dyed shirts, a girl wearing a sparkly long skirt, and some other outfits that looked like they were supposed to be costumes of some sort. There were two male teachers standing in the hallway and one had a polo shirt on with the collar turned up and hightops on. The assistant principal was further down the hallway dressed like Cyndi Lauper with legwarmers and a wig.<br />
<br />
When I walked in the classroom, Lilli was sitting in her usual spot on the floor, with the speech therapist next to her and a pile of Legos. I got down on the floor and took the ipad.<br />
<br />
"Hey you, I brought you a hippie chic outfit so you can dress up like you're from the 70s, do you want to go change?"<br />
<br />
I showed her the choices I brought. I had a small selection of skirts or jeans, and jewelry and hair accessories. She used the ipad to tell me yes or no for each item, and we went to change. After I had changed her, I saw a little hint of a smile. But she still was upset, I could tell. I think the damage had been done. It was almost too little too late. All week, she had missed out. And today she hadn't gotten to wear her outfit into the building. Now everyone was in class, and there were only two other students in her room, one of them non verbal. Who would even see her? As I tried to give her a happy pep talk in the changing area, she tried to tell me something. I wish I knew what it was.<br />
<br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-YtrYaAjx604/VhZ6keBp1KI/AAAAAAAAA6c/Kwm_V1OQ-4M/s1600/IMG_2748.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-YtrYaAjx604/VhZ6keBp1KI/AAAAAAAAA6c/Kwm_V1OQ-4M/s1600/IMG_2748.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her sign for wanting to say something. <br />
Unfortunately, if it is not pre programmed onto<br />
her ipad, she can't tell me.</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-sZxdFt2kL_4/VhZ6kaEo_HI/AAAAAAAAA6g/73dykLcAFl0/s1600/IMG_2747.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-sZxdFt2kL_4/VhZ6kaEo_HI/AAAAAAAAA6g/73dykLcAFl0/s1600/IMG_2747.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying desperately to get out a word. All she said was "Ggggh."</td></tr>
</tbody></table>
Could this, the Spirit Week thing, have been why she had been having a tough week and not doing her work? Was this the reason behind the moodiness and "unwillingness to comply"?<br />
<br />
I certainly believed it, but I didn't know if others would. It takes a lot of faith to give Lilli that kind of credit. I like to err on the side of giving her more credit as opposed to less. We would see if this outfit change would make a difference in her day.<br />
<br />
When I brought her out, the teacher made a big deal and took her picture. I left.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-OHVJZAL8WRk/VhZ6keLQTzI/AAAAAAAAA6k/HD7pAN461yU/s1600/IMG_2746.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-OHVJZAL8WRk/VhZ6keLQTzI/AAAAAAAAA6k/HD7pAN461yU/s1600/IMG_2746.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She can't get the word out. This kills me. Every time. </td></tr>
</tbody></table>
When I picked her up later, he told me yes, she had a better day. Her attitude had improved a little. She had done work.<br />
<br />
I wasn't surprised.<br />
<br />
Later, I talked to her about it all. She smiled and hugged me. I truly think that was it. She wanted to participate and be a part of what all the other students were doing. I just did not know, and since she cannot tell me or dress herself, she was stuck wearing what I dressed her in for the week. I do give her outfit choices every morning, and she approves or vetos the choices. But I never offered gray clothes on Thursday or a 70s costume on Friday morning, so she could not tell me.<br />
<br />
The teacher sent me a video that the school had made, talking about Spirit Week and showing pictures of all the costumes from staff and students all week long.<br />
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<br />
Lilli had missed almost all of that.<br />
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It broke my heart.<br />
<br />
I know, it is so ridiculous. Such a small thing. <i>So what, spirit week... so what?</i> I tried to tell myself. But my heartbreak was because she could not tell me. And it's because she is already so unable to participate in many other middle school activities. These little things are hard. I want her to be included. I know she is different but she can still be included to the extent that she is comfortable.<br />
<br />
I hadn't known there was a school dance until I heard about our neighbor going to it. Lilli couldn't go, could she? I thought back to my own middle school dances. Memories flooded back of acting like a giggly, boy crazy, just-turned teen, running back and forth to the bathroom with groups of girls, checking my hair and lip gloss in the mirror, talking about boys we had crushes on, and dancing until we were sweating. Getting dropped off at the curb out in front of the school and picked up hours later.<br />
<br />
There is just no comparison to my middle schooler Lilli. I am navigating through what should be a typical middle school experience in a completely different, unscripted way. Nothing feels nostalgic, like, <i>Oh yes, I remember this from when I was in 6th grade....ah, memories. </i>No. Everything is a step back, trying to figure out how to make the situation work in a much different way for Lilli, and trying a bunch of ways to make it be OK.<br />
<br />
Nothing is typical.<br />
<br />
And I am dealing with my own feelings and realizations throughout all of this. Can Lilli participate in this? No. Can she participate in that? Maybe in a tiny way. She is in middle school, but she is in a different category. I am trying to balance what she can realistically participate in with what I know middle school is all about.<br />
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Remember back to when you were in middle school. Remember those kids in the special class, at the far end of the building and you hardly ever saw them? That's my kid. But her classroom is right in the 6th grade hallway. So she is closer to everyone, but she is still different. She eats lunch in her classroom. Someone helps her eat. She goes to PE class....with the other kids who have disabilities. She could never participate in a regular gym class. Someone who does not know her might think I am just being negative, but no, she really could not handle it. CP and autism is a tough mix for someone to try and follow directions and participate in a group activity.<br />
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"Mainstreaming" or "Inclusion" is a great thing, except for when your child can't really participate with other typically developing kids. That's why the small things are a big deal to me. She can't play sports. Band? Chorus? Nope.<br />
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Although I hate to be negative and say "Lilli can't." She..can't do those things. That's true.<br />
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But <i>Spirit Week</i>? Yeah, she can participate in that in her own way.<br />
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When I talked to the teacher about all of this, he asked me what I thought about the middle school dances. He was possibly being polite. He and I both know it is very far fetched. I would need a special kind of person to help me with this.<br />
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If Lilli were to go to a middle school dance, this is what it would look like: She could handle about 7 minutes tops. Maybe only 4. She would be unsure and possibly overwhelmed, but maybe she would love the music and the excitement and being around the other kids, and maybe she would jump up and down and squeal and laugh loudly. She would stick out like a sore thumb. Everyone would look at her and wonder. Maybe some cruel kids would make fun of her, or maybe people would not know what to think. She would have to have a teacher right there with her, holding her hand or arm. She might enjoy the experience for just a couple of minutes, and if, hypothetically, a couple other sweet, amazing selfless girls were to hold her hands and encourage her, she might last for a few minutes more. Not likely, in middle school. Then she would look for the exit and pull on the teacher to leave.<br />
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But seriously, would that ever even happen? Other kids being accepting of a special needs girl at a dance? I sadly doubt it.<br />
<br />
It's all about experiencing things, for a short sliver of time. And it will always be different for Lilli. She cannot participate in a lot of things. But still, she can participate in a few things.<br />
<br />
Lilli went to the beach and loved it for the first hour, but then she was ready to leave, while her siblings wanted to stay for three more hours. Lilli can go to the library for a couple of minutes, but if we linger too long, she loses it. Lilli can go to maybe one store, for a very very short list. Like, two things. After that, she melts down.<br />
<br />
So with anything, I think Lilli wants to experience things and take a little "taste." She could've worn gray to school on Thursday. She probably would not have lasted at the pep rally for more than a few seconds. But she would've seen and heard it, to know what it was like.<br />
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Tuesday was "Twin Day." Dress like your BFF. Lilli doesn't have a bff. Another stab to my heart. Will she ever have a bff? The teacher had dressed like one of the other students that day. I remembered now, as I reflected on the week. He had explained it, and I'd said, "Oh, well who is Lilli's twin?" He said he didn't know. I did not think too much about it until Friday, when the week had culminated into a disappointing realization. My neighbor told me later that the 6th grade girls had come up with a plan so as to not leave anyone out. They all wore khaki shorts and navy tops so that they would all be "twins" together.<br />
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I didn't know.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-znqhYXp-iH8/VhZ6ekkFSHI/AAAAAAAAA6U/v0RvMiW9ouI/s1600/IMG_2603.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-znqhYXp-iH8/VhZ6ekkFSHI/AAAAAAAAA6U/v0RvMiW9ouI/s320/IMG_2603.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What she wore on "Twin Day." But no one was her twin.</td></tr>
</tbody></table>
On Twin Day, Lilli had worn a cool new pair of coral colored jeggings I'd gotten her and a black and white tunic top, with a matching coral necklace. No one else was dressed like Lilli. Had she noticed? If everyone was talking about it, sure she noticed. That day when I picked her up, the teacher had told me she refused to do her work and they could not figure out why.<br />
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I think I know why.<br />
<br />
So, the teacher did apologize and he felt bad, He did not think Lilli cared. He promised to send me the school news each week so I would know about special days and events.<br />
<br />
As for the school dance, I guess we will just put that idea on hold for now. It is one of many situations where Lilli will miss out. I can't take her. I'm her<i> mom</i>. I know that's totally not cool. And maybe she will get to go one day and try it, or maybe she will never go.<br />
<br />
This struggle I have as her mom will probably never go away. A parent wants a child to experience life to the fullest and follow their dreams. I am ok with saying, right,<i> she cannot try out for the cheerleading squad.</i> But I also think we all should lean towards giving someone the benefit of the doubt. So here is why I wrote this post. For all the parents, teachers, therapists, or anyone who has the opportunity to let someone be included. Don't assume they do not care. Especially about the little things. Try to include them. Even a few minutes is great.<br />
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Sometimes, the "little things" are all they have.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-eOJzizp-Gsw/VhZ6ky29wwI/AAAAAAAAA6s/NJTsqwhPCD4/s1600/IMG_2750.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-eOJzizp-Gsw/VhZ6ky29wwI/AAAAAAAAA6s/NJTsqwhPCD4/s1600/IMG_2750.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lilli with a makeshift 70s outfit, right before I left.</td></tr>
</tbody></table>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-36714678659380217852015-11-15T07:37:00.001-05:002015-11-15T07:37:23.813-05:00The Next Step: A New Ipad<div dir="ltr" style="text-align: left;" trbidi="on">
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April 21, 2015</h3>
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When we first moved here, we had a meeting with the new
school district about Lilli. </div>
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In that very first meeting, (one of many to come) they asked
me what we needed. The director of special education asked me if Lilli would
need a communication device. She wasn’t just being nice, although she was
extremely nice. She most likely asked me because the IEP, a legal document,
stated that Lilli needed a communication device. </div>
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Of course it is important to
have this in writing. It means that the school district has to provide one for
her. But… we had the NovaChat. So technically she didn’t need an ipad. She had
the ipad for four years from the previous school district, but we had to give
it back when we moved. I had asked the previous school district if we could please<i> buy</i> the school’s ipad to take with us when we moved. I figured, <i>it's old, it's used, maybe
they would let us buy it for a fair price</i>. We had it for four years, and it
felt like it was Lilli’s. But it wasn’t. </div>
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They said <i>no</i>.</div>
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I really didn’t have much time to waste lamenting about
their decision and the loss of the ipad. What could I do? The answer was a firm
no. I had to move on. I had to make plans. </div>
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I took screen shots of as many of the speech app’s screens
as I could until it felt like too many and I needed to stop. I took all the
pictures and videos off of it and saved them to our laptop. I watched a few of
the video clips and got sentimental about how far Lilli had come in the years
since we had that ipad on loan to us.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ObsxCLPda1c/Vha43CcwMbI/AAAAAAAAA8c/dVGmmsYk5Bg/s1600/IMG_0896.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://1.bp.blogspot.com/-ObsxCLPda1c/Vha43CcwMbI/AAAAAAAAA8c/dVGmmsYk5Bg/s320/IMG_0896.PNG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This screen was used by the ABA therapist to ask Lilli questions. She moved the blocks around so they were never in the same place. She would ask, "What's your name? How old are you? What is your brother's name? When is your birthday? What does your dad do for work?" And Lilli would <i>independently</i> find the right answer and press it. This proves she can read. Or at least recognizes and reads these specific words that she has been taught. I will stress that they practiced on this page a LOT. She was taught this and practiced it multiple times every day with assistance until she knew it and could do it independently. Maybe this is one creative way to teach a child with autism how to read. </td></tr>
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I hope someone reading this might be a teacher or school
administrator who has the power to change a student’s life like someone changed
ours. It was a principal who looked at me and said all those years ago, “Well,
that’s it. Lilli needs an ipad. Let’s get her one.”</div>
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That principal gave us a priceless gift. She gave Lilli a
huge chance that we could not give her at that time. It truly was life changing.</div>
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I wasn’t sure if we’d
be getting another ipad anytime soon. With moving, buying a house, and many
other expenses we had at the time, there was no way we could buy our own ipad
right away. It might be a long time until we could save up for one. Should we
take a chance on a used one? I looked on Craiglist. What about a refurbished
one? I looked online at Best Buy and EBay. What about insurance programs? I did
not know if getting a used one without an insurance plan was a good idea. We
had already been through that before, with one ipad put under a running faucet,
and another ipad dunked in the bathtub.</div>
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It wasn’t just the ipad, we would need Proloquo2Go, the $200
speech communication app. Also a good strong case to protect the ipad, and a
screen protector. This could all add up to well over $800, easily, depending on what
type of ipad we chose. </div>
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Even so, I wanted to
remember what it all looked like, in case we got another ipad and I wanted to
program it all the same way again. I needed to document it all somehow.</div>
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The whole reason we got the Novachat in the first place
(which was paid for by health insurance as medically necessary equipment) was in
case we moved out of the district and we needed to give the ipad back. It was
kind of like our back-up plan. And now it was actually happening. </div>
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I could not believe how much was on that ipad. There were
hours, days, months of work put in by the therapists and the teacher and myself,
making buttons, taking pictures of Lilli’s things and putting them onto new
buttons. It took me a few hours to copy things and then research how to delete
all of our information off of the ipad. I erased the entire ipad and put it
back to factory settings. It was sad for me. It felt like a total loss.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-6un4Fny7qtc/VhaTMufYvEI/AAAAAAAAA7I/7RXGbTAZAYM/s1600/IMG_0915.PNG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://2.bp.blogspot.com/-6un4Fny7qtc/VhaTMufYvEI/AAAAAAAAA7I/7RXGbTAZAYM/s320/IMG_0915.PNG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of these buttons? It takes time to make each one. It takes time to put all this stuff in there.<br />
There was a lot of time put into her old ipad. There were hundreds of buttons. It all got erased.</td></tr>
</tbody></table>
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Except that it wasn’t a total loss. </div>
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We had gained valuable experience. We now knew so much more
than I ever imagined I would learn about using an augmentative communication
device. This was yet another stepping stone. We were moving closer to our goal
of Lilli being able to communicate her thoughts to us clearly. The only problem
is, we didn’t know what the next step was. It wasn’t until we moved that I
realized what the next step should be.</div>
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We needed another ipad.<br />
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I explained in the meeting about all of this, but I didn’t
ask for an ipad. In that meeting, my focus was on something completely
different: Lilli’s happiness. I know that it seems trite to want my child to
just be happy at school. It almost seems apathetic. But we had just had a year
of daily extreme unhappiness (crying, collapsing on the floor screaming or
sobbing, refusing to work) with new teachers. I wanted Lilli to turn the corner
and start fresh with a new, happy attitude. I wanted an ipad for her, but I
wanted her happiness way more. So when the topic of the ipad came up, I didn’t
say much. She had been using the NovaChat for some communication anyway. Only
some. Better than none. She used it to tell us yes or no, choices of food for
meals, sometimes she used it to tell us she had to go to the bathroom, and
mostly she used it to make choices for movies and music. It was progress. She
had learned about categories and using describing words and action words. She
had used it to take to school and say hi and do show and tell. Her homebound teacher Leslie had used
it for spelling and math. We had worked for a long time to help teach her about
expressing opinions and making decisions with the NovaChat. </div>
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It was progress. </div>
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Lilli had used the NovaChat for many purposes with her
teachers and therapists. But still, I could not shake the feeling that this was
not the best device for her to communicate effectively. It just wasn’t as easy
to use as the ipad was. She couldn’t even turn it on all by herself like she
could turn on the ipad. I was not sure what the answer was, but I was pretty
sure it might be that we needed another ipad. </div>
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But this time it would be slightly different. I knew what we
would need to do when we eventually got another ipad… I just figured it would be a long time until
we would actually purchase one. </div>
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The teacher scheduled a meeting with the speech,
occupational, and physical therapists. It was not like any of the many meetings I had
attended in years past. I'll tell you what it was <i>not</i>: I was not sitting there feeling…how do I describe
this…like I was invited to be there and listen to others. Like the meeting was
about my child but someone else was running the meeting. This felt different.
They were there to <i>listen to me</i>. I
almost felt like I was in charge of this meeting. The teacher had suggested
that I bring my laptop as I had before, and show the therapists the videos I
had of Lilli in therapy and school sessions. There were polite introductions,
and then they all looked at me and waited quietly, ready to take notes. It was
really unbelievable. </div>
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I had the floor. </div>
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Where to begin? I told them some things about Lilli, they
asked a lot of questions. I showed them pictures and told them what Lilli was
like, things she could do, things that frustrated her, things she loathed. I
turned on my laptop and showed them many short video clips in a row, most were
about 30-50 seconds long. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-mf2rtlw2Vas/Vha7WrT2HGI/AAAAAAAAA8o/fu4ttRZzFY4/s1600/what%2BI%2Bshowed%2Bat%2Bmeeting.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="176" src="http://3.bp.blogspot.com/-mf2rtlw2Vas/Vha7WrT2HGI/AAAAAAAAA8o/fu4ttRZzFY4/s320/what%2BI%2Bshowed%2Bat%2Bmeeting.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before the meeting, I went through years of video clips and chose the best ones to show what Lilli could do. These were my final choices. They were all about 30 seconds long. I was so glad I had taken these videos. There is no better way then to show someone what Lilli can do. Much better than telling someone or having them read something.</td></tr>
</tbody></table>
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Some were
videos of Lilli jumping, walking up steps, selecting category buttons on the
communication device, learning to answer multiple choice questions on the ipad,
and listening to music with headphones on.
There were others. </div>
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I felt a little awkward at times, like, when do I
stop? There is so much to tell. I told them about how Lilli does not like to be
talked to in a baby voice, like she is a toddler or like she is dumb. We talked
about her interest in fashion and her sense of humor. I told them about my frustration
in not knowing what reading level she is on, and that there really were no
appropriate assessments for Lilli. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I told them that I believe Lilli will talk one day. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I know it sounds crazy, but I don’t care what anyone
thinks. I pray for this every day, and I just believe she will talk one day. I
just do.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They smiled politely and said nothing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I appreciated that they were silent. There isn’t much to say
about that. Not right now, anyway. It’s <i>my</i>
dream. No one can talk me out of having a dream.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then we talked about the ipad, and how far Lilli had come in
communication over the past few years. I explained PECS…they had heard of PECS
(Picture Exchange Communication System by Lori Frost) and seemed to nod like it
was sort of familiar, but none of them had training with PECS. I mentioned Lori
Frost, and one of them picked up a pen and wrote something down.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The speech therapist
had heard of Proloquo2Go, but hadn’t ever really used it. I explained about
how we used ABA to get Lilli to use PECS and Proloquo2Go on the ipad. The OT
had heard about ABA but no one in the district did ABA or had been trained to
do ABA.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The tech people were
android people. No one knew about Apple products and no one had ipads here.</div>
<div class="MsoNormal">
I wasn’t discouraged, I was kind of in that “It is what it
is” frame of mind, focusing more on how to help Lilli transition into this new
classroom and be a happy, willing student. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I never dreamed that they would buy Lilli an ipad. And then
Proloquo2Go.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is the email I got from the teacher about a week after
the meeting:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Jennie,<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I just had a
conversation with Mr. [the principal] and it appears we will be able to
purchase an iPad for Lilli’s use in the classroom. I will recommend that we buy
the one with the most memory and features. I will need your help to recreate
(as best we can) the iPad you used in SC that was so beneficial to Lilli.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>This may take a few
days but I wanted to share the good news.<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was blown away. Anyone who is reading this that might be
in our type of situation should know that a small school district <i>can</i> do this
type of thing. It is only a matter of the right staff member with power being involved with your child's education.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The past two school districts we have lived in were small, with
good people in place. Not a ton of money, mind you. Just good people who knew
about certain funding that can be used for this type of thing. Not a lot of red
tape, not a ton of paperwork or meetings to go through. Just one teacher going
to the principal and saying, “This kid needs an ipad. How can we get one for
her?” and a principal saying, “Yes, I can find money for that, no problem.”
When I tell people about our experiences, I usually get shocked reactions, and
teachers in bigger districts say things like, “That would <i>never, ever</i> happen in our district. That is amazing.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Why is it so amazing? Shouldn’t it always be like this for
any student? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you had a child, and they really needed something that
could really benefit them in their education, shouldn’t they get it? Is it
really just that simple?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If I hadn’t been a classroom teacher before, I might not
have as much of an understanding of how things work behind the scenes. I know
from experience that there are things that go on behind the scenes. There are
budgets, there are people to please, there are legal issues, there are
reputations, there is always a money issue. There are many many issues in
school districts. I want to say that from a parent’s perspective, it is so
refreshing when things are just kept very simple. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>What does your child
need? Does she need an ipad with a $200 speech app? Has it really helped her
with school and communication in the past? Ok. We’ll get one. Hopefully next week.<o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
That’s a good school system. That’s meeting the needs of the
child. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is the next step in Lilli’s life. The teacher is going
to give me the ipad next week to completely program Proloquo2Go by myself,
since no one here knows anything about it. Then we will have a meeting with the
speech therapist, and come up with goals for getting Lilli to use it. I feel
that Lilli should not even see the ipad until it is ready and programmed. I
will have to take it home and work on it when she is not watching. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I feel strongly that we should put NOTHING else on the ipad
except the Proloquo2Go app. No Youtube, no movies, no games. Not at first. We
learned from last time that these things are a distraction to Lilli. If she
gets to choose between telling us something with Proloquo or playing on a game
app, she will always choose the game app. It is too much of a temptation for
her. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This ipad will have strict rules from the beginning. It will
<i>just</i> be her voice. No other purpose.
Nothing fun. Then she will have to use the ipad every time she wants something,
to get what she wants. We will use everything
we have learned in the past four years, to make progress toward independent
communication. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is the next step. And it is the next chapter in Lilli’s
story.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think it's going to be a really good chapter.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
</div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-13352060086057994672015-11-15T07:21:00.003-05:002015-11-15T07:21:49.119-05:00The Betterness of it All ...Catching up on Spring and Summer 2015<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: left;">
I have some serious catching up to do. You are all wondering what the heck happened with us. I've left my blog readers in the dark, I'm sorry. My facebook friends see happy pictures and glean that things here must be going pretty well. I have not shared much publicly about the details. I confess, I have still been writing. I just need to get my act together and post them. This post right here has been holding me up. I could not figure out how to sum up spring and summer and everything that happened without writing a book. So this is kind of like a few "chapters" from April through the summer. </div>
<h3 style="text-align: left;">
July 2015</h3>
<br />
I woke up in the middle of the night, smiling in the dark about good things.<br />
<br />
We had been living in our new home for six months now.<br />
<br />
For those past six months, I had been waking up in the middle of the night feeling anxious and uncertain. On that morning in July, I woke up thinking about only good things. That was a gift. It meant something to me. It meant that maybe we had turned a corner.<br />
<br />
I wrote in March that I was looking forward to the day when I would be able to write the words, "It got better."<br />
<br />
And it did get better. Overall.<br />
<br />
I wasn't waiting for things to be perfect, great, or even good. I was waiting for the day when I felt like we had finally come up for air.<br />
<br />
I wanted Lilli to be settled into her new life and routine and be <i>happy</i>. I could try and describe to you what it's like to have a non verbal eleven year old crying loudly for much of the day everyday, bored, angry... so dependent on us in all ways. Wandering around not knowing what to do with herself, watching endless movies, sobbing and shoving me in anger.... I just can't do it justice.<br />
<br />
So many details, so much emotion, so much hard work, the months that came before July. I can't even go through all of the details in a blog post. It would be sixty paragraphs long and you all would be like, <i>this is so depressing, when will it end? </i><br />
<br />
But Lilli started school in the spring, and it was good from the very beginning. It was <i>good</i>. She was <i>happy</i>. When Lilli is happy, we are happy. When Lilli is crying, it affects us all. It is frustrating and unnerving and unsettling, because much of the time, we cannot figure it out or fix things.<br />
<br />
She cried for months after we moved here. So when I say she was happy to go to school, it's a big huge deal.<br />
<br />
<h3>
Back in April</h3>
<br />
I sat in the van in the parking lot every day for three weeks in April, while Lilli went to school. It was only for a couple of hours. I had to or she wouldn't have been allowed to attend school because of a hold up with a legal document about medication for her seizures, waiting for a doctor appointment and insurance issues.<br />
<br />
Well, I did not <i>have</i> to. I <i>wanted</i> to. And it was worth it.<br />
<br />
I sometimes look back on that time with a little nostalgia. Mostly because I had a newborn, and I spent much of that time holding and snuggling him. But sometimes I look back on April 2015 and I just shake my head. Really, overall I think the whole experience was just another way of making me thankful for what we have here in America. We just assume our children will get to go to school, because they do - it's the law. Except that for a child with special needs, it's not always easy. Most times it's actually really hard. We special needs parents don't focus on new backpacks, fun new outfits and shoes and school supply lists and who is the room mother....that stuff is way down on the bottom of a long list (if it's even on there at all) after medical stuff and making sure my child is safe, special diets, communication devices, adaptive classes and equipment, and what happens if my child has a seizure, a meltdown, or poops in her pants at middle school.<br />
<br />
Special needs parents worry about a list of "other things." Getting to go to school is monumental.<br />
<br />
Getting Lilli to the point of being able to go to school was one thing (I'm mostly talking about her autism and being able to even handle going to a new place with new people, and use a device to communicate her needs.)<br />
<br />
Getting all the documents and legal stuff in place was another. She actually was not allowed to attend school unless I had an in-state doctor's orders for administering her emergency seizure medication if she were to have a seizure at school. This was much trickier than I had anticipated. I will spare you the ridiculous details of the hurdles. Really, to sum it up, it took dozens of daily phone calls for many weeks, and ultimately my unconventional decision to simply sit in the parking lot so she could walk into the building and go to class. While I waited. For two hours.<br />
<br />
It was a memorable time for me. In many ways, I can't believe I did that. But I had to. I am not a supermom.<br />
<br />
I am a desperate mom.<br />
<br />
I watched my unhappy eleven year old flounder and sob and melt down in our new home for months since we moved here. She needed this. She needed to go to school. So I just did it. I sat in the parking lot for two hours every day for three weeks.<br />
<br />
I sat with my five year old, Josh, and we read books, colored, talked, and watched movies on a mini DVD player. I nursed the baby and just held him, many days while spring rain poured down the windows around us.<br />
<br />
It was kind of forced rest from unpacking. And I needed the break. It wasn't really "restful," because keeping an energetic five year old entertained for two hours while holding a baby in a teeny space is challenging and requires creativity, but it made me just sit with my sweet boys and do nothing but spend quality time with them. And the pay off was huge: I got to see Lilli bounce into the school all smiles, and bounce happily back out again after two hours.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-Z6mC97PA5Qo/VjDutD7Q5UI/AAAAAAAAA9E/KlXA20cKecQ/s1600/IMG_4636.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-Z6mC97PA5Qo/VjDutD7Q5UI/AAAAAAAAA9E/KlXA20cKecQ/s320/IMG_4636.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holding a baby in the van for a few hours on a rainy April morning. Not so bad. </td></tr>
</tbody></table>
<div>
<br /></div>
<h3 style="text-align: left;">
School</h3>
<br />
When Lilli started school, I was nervous for her. I wanted her to be happy, to love the teacher, to love the other kids, to not be overwhelmed by the newness of it all. Lilli's teacher emailed me long detailed messages about how she did, who she interacted with, what she did. I was in tears, joyfully sharing the news with others, telling them of the great news that Lilli was finally <i>happy</i> and doing well in school.<br />
<br />
This was what we had wanted. Happiness.<br />
<br />
My, how our perspective has changed over the years. We, her educated, strongly advocating, go to every three hour IEP meeting and pour over every word in every document (both of us former teachers), heavily involved parents, just wanted Lilli to go to school and be happy. Forget about the goals and all that work stuff for now. Let's just get her to walk into the actual school building <i>willingly</i> and <i>want </i>to be there.<br />
<br />
Lilli went in with her little backpack with her her favorite cheesepuffs, a potty button, and "Yes No" choice cards. I wish I would've taken her picture as I watched her bounce away with her teacher each day.<br />
<br />
The very first day in her new school, the teacher asked Lilli if she needed to use the potty, and she tapped the "no" card. Each day, the teacher asked her, and sometimes she touched "No," but sometimes she would touch "yes" and the assistant would take her, and she would go. The teacher told this news to me like it might not be that big of a deal, but it was <i>huge</i> to me. He did not know the history behind this...how hard we have worked to get to this place of simply telling someone yes or no about having to pee. She did not even know these people, and she was telling them accurately if she had to use the bathroom. <br />
<br />
In our world, Lilli telling new acquaintances that she has to use the bathroom is <i>monumental.</i><br />
<br />
Progress. Yes, she had made progress even since last year.<br />
<br />
Lilli made friends with the other students very quickly. The teacher explained that at this point in the year, the kids were nearing the end and it was great to have a new student come in and create a little excitement in the classroom. (Such a positive attitude! You would think a teacher would have had the attitude, <i>oh no, a new student? What? At the very end of the year? How inconvenient.</i>) But no. That is not how things went down. Not at all. Lilli got lots of attention and the whole experience was very happy for everyone.<br />
<br />
The other students sat on the floor with her and listened to her music with her and built Lego towers with her. Lilli delighted the new teacher with her affection and laughs. She bounced happily into the building every single morning. All of the positive bits of news that came from the teacher each day buoyed my spirits and confirmed that this was all going to be a good change for Lilli.<br />
<br />
I knew it was the "honeymoon period" and that it would not always be all happiness and Legos, but for now, it was good. She was happy, And so was everyone else.<br />
<br />
Good things. The betterness of having a great new teacher and fun new classmates. This was our spring, and it was good.<br />
<br />
Then came summer, and school ended.<br />
<br />
<h3>
Summer</h3>
<br />
There were great things about summer. Like how we were getting things done around the house... ripping up nasty carpet and unpacking and rearranging...looking at paint samples, fighting about paint samples... putting the paint samples in a drawer and just...not painting.... but it's been fun to fix this place up and know that we are going to live in this house for a very long time. We can take our time to pick out the color of the walls, because we are settling here. No more moves. We moved boxes and furniture around, and then we moved them around again. Pretty much all summer we just moved our junk from room to room. We are not very good at decorating. At least there are less boxes laying around now. Sorta.<br />
<br />
We celebrated the 4th of July by having family come over. We set off our own fireworks instead of fighting the crowd, and it worked out better than I thought it would. We were not sure how Lilli could enjoy fireworks. Only one time did we ever see her enjoy looking at them, which was when we were in Disneyworld. Being in a crowd of people is always a risk, and being near lots of smoke from fireworks could trigger a seizure. So we have to get creative.<br />
<br />
On this 2015 fourth of July, Lilli watched small fireworks through our front picture window as my husband set them off in the driveway. She was interested, and stood with me and watched the fireworks and sparklers through the glass.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-lM4IvUvEtf8/Vkh1KtZm0uI/AAAAAAAAA9Y/66V1BoyrPD0/s1600/IMG_1282.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-lM4IvUvEtf8/Vkh1KtZm0uI/AAAAAAAAA9Y/66V1BoyrPD0/s320/IMG_1282.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watching our little fireworks in the driveway through the window.</td></tr>
</tbody></table>
<br />
<br />
Sometimes I get caught up in thinking that we need to do what all the other families around us are doing, like get in the car and drive to a field with hundreds of other families and watch the awesome huge fireworks while sitting on a blanket together. But that just doesn't work for us. That's not our family. With Lilli, we can't do that. And it's ok.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-KArMSILK4gI/Vkh1MsS5k1I/AAAAAAAAA9g/CsetikO1Kms/s1600/IMG_1283.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-KArMSILK4gI/Vkh1MsS5k1I/AAAAAAAAA9g/CsetikO1Kms/s320/IMG_1283.JPG" width="240" /></a></div>
<br />
Our way of celebrating was great too.<br />
<br />
The best thing about the summer was that we moved to a street with <i>wonderful</i> neighbors. Josh and Chloe played outside every day. They would beg to go out as soon as they woke up. They played for hours and hours with the neighborhood kids. It was a dream come true for me, to have this for my kids. We own a Wii. They played it less than 5 times total the entire summer. They had hardly any screen time all summer except for movies we checked out from the library. They tromped through the woods and played until it became too overgrown with summer leaves. They swam in the little KMart pool we had and jumped on the trampoline. We went nowhere. We did nothing special. It was the <i>best summer ever.</i><br />
<br />
Except for Lilli.<br />
<br />
Lilli did not have the best summer ever. She does not do well with a go-with-the-flow summer schedule. She did not want to go in the pool much, only a few times. She had a bunch of seizures all summer, and that was tough. Really tough.<br />
<br />
She was just so unhappy much of the time, and all she wanted to do was stay inside and watch the same movies over and over. It was hard for her. If I made her go outside, it usually did not last long. She would melt down and collapse and sob, yanking at the door to go back in.<br />
<br />
Lilli had summer school a couple of hours a week for six weeks, and that was a bright spot in her week. She loved the teacher, and she did great. I was so thankful the day the teacher brought Lilli out to the van after a school session and said, "She's very smart! She knows what's going on, she absolutely does." I appreciate when others point out Lilli's intelligence in front of her. Lilli needs to hear it. It validates her. You should see the reaction from Lilli whenever someone sincerely complements her brain. She <i>so </i>wants others to see this in her.<br />
<br />
I could not wait for school to start for Lilli. She needed it so much. Summer yanked me in different directions every day. I wanted Josh and Chloe to have all the outside playing time they wanted. I wanted them to experience what every kid should during summer months: catching fireflies, riding bikes, swimming, playing outside and imagining.<br />
<br />
I wanted Lilli to have a schedule and activities that she enjoyed too, with other kids her age. I looked into therapy horseback riding, since that is something she has always done and enjoyed.<br />
<br />
<h3 style="text-align: left;">
Therapy Horseback Riding</h3>
<br />
$50 a lesson here. A <i>lesson</i>. Actually that's the reduced rate, because it is technically $100 a lesson but they have some sort of funding that lowers it to $50 for a 30 - 45 minute lesson.<br />
<br />
I don't know what I'm going to do about that one. I need to do more research. I just assumed when we moved here that she would continue with riding. I play little mental games with myself and try to pretend by thinking, <i>$200 - $250 a month is no big deal, so what if she just sits on the back of the horse while someone else leads her around a ring for a half hour, it's good for her. It's helping her with balance, self confidence, she's interacting with others, she has something to look forward to, she has something to be proud of, she has an interest besides movies, it gets her outside</i>...the list of positives is long.<br />
<br />
But $200 a month IS a big deal. We used to pay $10 a lesson for a wonderful program where we used to live. They did a lot of fundraisers and kept the fees low, bless them. I really don't know how other families with special needs can afford riding therapy. Maybe they do their own personal fundraisers. I have thoughts about doing a fundraiser for about ten seconds and then I get overwhelmed and stop thinking about it.<br />
<br />
So Lilli didn't have therapy horseback riding this summer. I'm still working through that one. It's the one "extra cirricular activity" (even though it's technically therapy) that Lilli looked forward to each week. She can't participate in sports, dance, or other typical activities like other eleven year olds can. I want to be fair to my kids and let them each do activities. It just doesn't always work out to being fair.<br />
<br />
I will figure this one out. Eventually. There are still so many things to figure out.<br />
<br />
<h3>
It's Better</h3>
<br />
The summer had ups and downs, but that morning in July, I took my first sigh of relief. We had come through a stressful row of months of transition, and the dust was finally settling. Even though there were still some tough things to work out, I felt hopeful. Lilli would be okay here. She would start school in the fall and hopefully have a happy year in the sixth grade. Even though she struggled through the unscheduled, summer days, I knew things would get better when we started the school routine in August.<br />
<br />
When I bought school supplies for Josh and Chloe, I did not have a list for Lilli. Lilli doesn't use supplies like Josh and Chloe do. She can't write with a pencil. She didn't need folders or pencils, erasers or notebooks or glue. For her self-contained class of four students with special needs, there was no list. So I bought her a brand new backpack and it sat empty, next to the stack of supplies I had to buy for the other kids.<br />
<br />
Lilli is always in a different category, and it's always hard to try and make things "even" or similar to what her siblings are experiencing. Even so, she seemed excited about that backpack and her new ipad.<br />
<br />
It would be a better school year for her. It was already better.<br />
<br />
<h3 style="text-align: left;">
Friends</h3>
For the first time in Lilli's entire life, she has some girls who are extending friendship to Lilli. They are friends with Chloe and Josh, but they try to include Lilli too. They ask if she can come out to play, if she can come jump on the trampoline with them or they push her on the swing. This is priceless to me. It is not easy to be friends with a child who has autism and cannot talk. Any child who extends friendship to Lilli, and is willing to step out of their comfort zone to learn who Lilli is and spend time with her, is an absolutely amazing young person.<br />
<br />
<i>It's good</i>. It's better than better. Having another child show friendship (any kind, even the very smallest acts) toward Lilli is the sweetest gift ever.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-hQe2Ftb0jGc/Vkh1ryslnFI/AAAAAAAAA9o/-iMyY3ix5bs/s1600/IMG_0301.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-hQe2Ftb0jGc/Vkh1ryslnFI/AAAAAAAAA9o/-iMyY3ix5bs/s320/IMG_0301.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My favorite picture from the entire summer. Most people know that Lilli puts her hand on her neck when she has something to say but she cannot say it. Notice that this is a "two-hand" on the neck gesture. Like she is shouting. Or just saying something with excitement and delight. The look on her face is priceless. She is playing with other kids. They are including her. This might have been the best moment of her whole summer.</td></tr>
</tbody></table>
<br />
<h3 style="text-align: left;">
Therapy and Doctor Stuff</h3>
<div>
Lilli charmed the new pediatrician here. By the time we left, she was giving the doctor hugs and kisses, and we were all chuckling. The waiting room time was stressful, but meeting the doctor made it all worth it. Wow, right off the bat, we found a fabulous doctor. What a gift.<br />
<br />
Working through the ridiculous insurance issues still, we got therapies in place and Lilli started receiving speech, occupational, and physical therapies. The speech therapy was what I was most concerned about. It is not easy to find someone who will have the knowledge and expertise of augmentative communication and believe in Lilli's capabilities and potential.<br />
<br />
We were blessed to find a wonderful speech therapist, who stepped right into place where Lilli had been in therapy before we moved. Speech therapy has been amazing.<br />
<br />
It's good. So good.<br />
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<h3 style="text-align: left;">
An Unexpected Surprise</h3>
<br />
Not long after Lilli began school in the spring, they ordered a new ipad for Lilli. I just now remembered that I wrote a blog post about that, while sitting in the van for two hours in April every day when Nate was napping. I will have to look for that post. The new ipad brings good news and much more to tell.<br />
<br />
I had fears about moving here. But more than fear, I had hope.<br />
<br />
When the future is unknown, you can choose to have fear or choose to have hope. You don't know what is going to happen. It might be hard. It might be a bumpy ride.<br />
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But it might be better than what you already have.<br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-39201812677250889982015-09-01T11:03:00.001-04:002015-09-01T14:32:26.214-04:00How a Necklace Led me to Thankfulness<div dir="ltr" style="text-align: left;" trbidi="on">
I carefully unclasped my daughter's necklace and took it off of her neck before I put her in the bath. I had put the necklace on her at 8 am, before school, and she had worn it all day until 8 pm.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-UTf6FfoILAU/VeW6GPzHUWI/AAAAAAAAA48/N-52q5UamOQ/s1600/image3%2B%25281%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-UTf6FfoILAU/VeW6GPzHUWI/AAAAAAAAA48/N-52q5UamOQ/s320/image3%2B%25281%2529.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before she got out of the car for school in the morning, proudly wearing her necklace.</td></tr>
</tbody></table>
<br />
This was the first time my eleven year old with special needs has ever in her life worn a necklace all day for that long without ever once trying to rip it off because of sensory issues.<br />
<br />
It made me thankful for the amazing therapist who used to patiently help my daughter to try and get used to the feeling of wearing jewelry without yanking on it and breaking it. So I sent that therapist a message and a picture of her wearing the necklace. We texted back and forth, rejoicing together about something so small - a little necklace - but it was huge to me.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-y6ReA-iz61Q/VeW6YYGTp_I/AAAAAAAAA5E/7T624nTAb1k/s1600/image2%2B%25281%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-y6ReA-iz61Q/VeW6YYGTp_I/AAAAAAAAA5E/7T624nTAb1k/s320/image2%2B%25281%2529.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Still wearing the necklace all afternoon...</td></tr>
</tbody></table>
<br />
Why such a big deal, to learn to wear a necklace without ripping it off? Because it was important to my daughter. She loves jewelry and fashion. She wants to wear necklaces. She had to learn how to wear one, and it took years to get used to it.<br />
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When I unpacked her backpack from school, I read a note from her 6th grade teacher that told me she worked on spelling words and counting money values. It made me so thankful for the sweet patient teacher who helped her get this far. She believed in my daughter's hidden intelligence, even though she is unable to speak.<br />
<br />
The necklace my daughter wore was a gift from the patient teacher I was remembering. She gave it to her on her last school day with my daughter, inside an engraved music box that says "You will achieve great things."<br />
<br />
I sent the teacher a message with a picture, told her about how school has been going, and thanked her for teaching my daughter years ago.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-9Nnz83ghVxo/VeW67g_2aLI/AAAAAAAAA5Q/B3NBjegMUuc/s1600/image1%2B%25282%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-9Nnz83ghVxo/VeW67g_2aLI/AAAAAAAAA5Q/B3NBjegMUuc/s320/image1%2B%25282%2529.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"You will achieve great things." Every time I look at this, I tear up. Such a gift, to have others believe in my child.</td></tr>
</tbody></table>
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<br />
I unpacked my son's kindergarten backpack and pulled out the pages where he had so carefully traced numbers from one to ten. I thought about all of the meticulous cutting and gluing he has been doing at home on his own - for fun - over the last few weeks. The scraps all over our floor each day are evidence of this. It made me thankful for the occupational therapist who lovingly helped my little guy practice using scissors, draw with markers, and get used to the sticky sensation of glue that he hated so much. I thought about all of the time she spent helping him learn to focus on and complete an activity or project. If she could only see all the projects he has completed since her last OT session with him many months ago.<br />
<br />
I sent her a message and thanked her.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-kkDFRw7e04w/VeW8nfvDPDI/AAAAAAAAA5w/AKVaFAuWLuE/s1600/IMG_2015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-kkDFRw7e04w/VeW8nfvDPDI/AAAAAAAAA5w/AKVaFAuWLuE/s320/IMG_2015.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I didn't teach my son to do this. Other people did. I know who they were, and I'm thankful.</td></tr>
</tbody></table>
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I thought of the conversation I had with my son's kindergarten teacher, where I told her that he had had a severe speech delay and many people worked very hard to help him though his early years. She was shocked. No one would ever guess that this little man, who delights me with every adorable conversation I have with him, was extremely frustrated in his inability to communicate basic needs and wants not so long ago, and that I spent long minutes deciphering and guessing his requests. Often with tears.<br />
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I sent a message and thanked the speech therapist who helped both my son and daughter make amazing strides, through her skill, encouragement, and unwavering belief in their potential for communication and expressing intelligence.<br />
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I think of every teacher each of my children has ever had. I remember them all, their encouragement, their hugs and smiles for my children, their patience, their love.<br />
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These people my children have had come alongside of them to help them learn and grow...they are gifts to me. And there are so many.<br />
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I think of all of the therapists and teachers we have ever known for all of our children. How do you thank a person for touching a life? How do you tell a person that their encouragement, skill, and commitment to help your child has forever affected the entire family and lives of all who surround this child?<br />
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Teacher appreciation week falls miserably short. End of the year teacher gifts are a paltry offering that can never express our immense gratitude. Therapists do not even have a special day or week of appreciation. Dance teachers, music teachers, really anyone who has ever loved my children and helped them in any way, even if it seemed small...these are all people I wish I could forever thank as I watch my children grow and succeed. The love is what I remember most. I am thankful for those who <i>really loved</i> my children, because that love helped them to grow. The faces of many are popping into my mind, as I think of those who have loved my kids.<br />
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The only thing I can think to do is to continue to thank these teachers and therapists as my children grow. I will never forget them. I will never be able to thank them enough. I will never be able to show them all that they did to help my child.<br />
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All I can do is show them pictures, and tell them, "<i>Thank you</i>."<br />
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If any of them are reading this right now, I want them to know that I am always thankful for them and all that they did. When I look at each of my children, I see all of the people behind them who have helped them become who they are today.<br />
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You can do this too. Thank someone. Tell them today, on a random day that is not a "national appreciation day" of any kind. Send a little message. Snap a picture and text it or post it. They still think about your child, trust me.<br />
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I know I still think about my former students, and I was a teacher eight years ago, in another state...another lifetime. I look up former students to see how they are doing. I don't contact them, I just look at their picture and check to see what they are up to. Did they graduate? Are they going to college? Did they stay out of trouble? I wonder if they remember me, and how much I poured into them when I was their teacher many years ago. I looked up a few students last spring to see who graduated from a special class I had once. I teared up, to see these precious faces who were once children in my elementary school class staring out at me from the computer screen as teenagers. High school graduates. Young people with big plans. I was so proud! Sitting there in the dark, staring at my laptop screen by myself, my heart was happy for them.<br />
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Some students, I was not able to find. I wonder about them still.<br />
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If you have a child who has ever had a therapist, or is old enough to have had teachers, you can be sure they remember your child and wonder how they are doing now. Wouldn't it be fun to let them know?<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-5NyISLMYZH0/VeW5kbZhyfI/AAAAAAAAA40/b1HQfxKD4yU/s1600/IMG_2014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://4.bp.blogspot.com/-5NyISLMYZH0/VeW5kbZhyfI/AAAAAAAAA40/b1HQfxKD4yU/s400/IMG_2014.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A gift from a former therapist. Loved indeed. <br />
Every time I look at this sign I am reminded about how much that therapist has loved my daughter.</td></tr>
</tbody></table>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-83330405637101010932015-07-16T11:39:00.001-04:002015-10-28T11:22:04.077-04:00The New Neurologist in the Mountains<div dir="ltr" style="text-align: left;" trbidi="on">
It takes 43 minutes to drive to the new neurologist's office. I drive in silence.<br />
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No movie, no radio. Just the voice of the GPS lady giving me occasional directions. I watch Lilli in the back seat as I drive. She looks out the window. Every now and then, she puts her fingers on her chin and smiles. A few times she claps and flaps her arms. She is happy about something, that's for certain. What she is happy about, I may never know. Maybe she is happy to be alone with no siblings annoying her. Maybe she is excited to go for a drive with just me. Although I am not very exciting at the moment.<br />
<br />
Maybe she is thinking and hoping about this new doctor. I had already told her that she needed to be kind and smile at the new doctor. That we had heard good things about him. That maybe he could really help us. I have learned that if Lilli smiles and is affectionate and happy when we meet someone new, things are much more likely to go well with that person. I want people to like Lilli. I want them to love her and see her like I see her. I figure, if they see her as I see her, they will want to help her.<br />
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This is my reasoning for telling Lilli to make sure to smile and give people hugs. No one can resist her smiles and hugs. Maybe that is desperate or wrong of me. I <i>am</i> desperate. Sometimes you get more help when people like you. But Lilli likes who she likes. She can tell things about people. She sizes them up and gives her love out to only certain few. I do not know her reasoning as to why some people deserve her affection and tight squeezing hugs more than others do. I tell her to be nice to the new doctor today, but I cannot really control what she will do. I have seen her hug and kiss doctors. I have seen her thrash around and scream at doctors, trying to get away.<br />
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When we arrive, I carefully pack up her two bags of important things to get through this visit, and my purse with the secret weapon inside. Not really a secret weapon. More like an emergency tool.<br />
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The iphone. <br />
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I don't let her see it. I zip it in an inside compartment. She has not seen it in a week. I am determined to keep it hidden unless all hell breaks loose. I need her to be her happy self...aware. Engaged. Not lost in her repetitive Youtube world of watching Elmo clips over and over. If she has the iphone, she will be less likely to look at the new doctor and smile and make him fall in love with her. On the other hand, if she does not have the iphone, she might be screaming.<br />
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It's a chance I decide to take.<br />
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We walk slowly up the sidewalk. In the reflection of the glass door, I see her foot turning in. I wince because I know it is going to be bad when we finally go to the orthopedic doctor in a few weeks. She will probably need braces again. Maybe even surgery.<i> Don't think about that today. That's later. Think about the neurologist. That's today.</i><br />
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When we enter the building, Lilli immediately begins to get anxious. Like a racehorse, she gets antsy and I can tell she is getting ready to bolt. I hold her hand tightly and force myself to smile at the woman at the front desk. She smiles warmly and directs me down a hallway. As we come to the end, I am dismayed to see that there is a line for registration.<br />
<br />
Lilli cannot stand in a line.<br />
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She anxiously tries to get away from me while making sounds of increasing distress. I silently pray that they <i>hurry up, hurry hurry.</i> They are used to kids like this here, right? They will not make me feel bad. But no one smiles at me or reassures me as Lilli collapses on the carpet and lets out a loud screechy wail, and then a low gutteral growl and a hiss. The large registration area and waiting room is at a very low level of soft talking in various areas. A constant but pleasant hum of activity with computers, people in line, and parents waiting with children.<br />
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Except for Lilli. She is the only person in the room that is howling at the top of her lungs.<br />
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Lilli shrieks. I watch the blond woman on the right behind the counter and I detect a flinch and a flicker of something. Irritation maybe. Lilli really is loud, and it is a shock if you are not used to it.<br />
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Maybe she is just irritated at her computer. I try to think positively but the negative sounds are quickly squashing any possibility of positive thoughts.<br />
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Parents in front of me in the line are busy with their own children and we do not make eye contact. I stand still and mute. Paralyzed by dismay and embarrassment, even after all of these years of experiences just like this one. It makes me feel like a failure. I still do not handle this well at all.<br />
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<i>Potty. She might have to go potty</i>, it occurs to me. She is pulling on my bag, trying to get into it. Maybe she is trying to tell me something. I do not have a communication device with me. We are between devices right now. It's complicated. I have to guess, but I am a pretty good guesser.<br />
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I step around a person at the counter and interrupt. "Excuse me, we have a 9:30 appointment but I need to take her to the restroom, I'm sorry. I'll be back." The blonde, possibly irritated woman is polite and tells me it's ok. "I'll tell them," she reassures me. She points to the restroom.<br />
<br />
I take Lilli across the large echo-y waiting room with high ceilings to the restroom as her cries bounce all around us. And she goes potty. I am ecstatic. A small victory to celebrate. I make a big deal and she smiles and puts her hand on her neck, as if to say,<i> I told you. I was trying to tell you.</i> She is quiet and happy while I wash her hands for her, get a paper towel and dry them off.<br />
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When we go back to the registration desk, we see a pleasant gray haired woman. She is courteous. But Lilli loses it again. Again she screams and tries to run away several times. I pull out my insurance card and sign papers while wrestling with Lilli's arm. She growls and hisses at me. The gray haired woman acts like nothing is out of the ordinary. She is busy with my insurance information.<br />
<br />
I look right at her and say in a matter of fact way, "She has autism."<br />
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I don't do that very often. I just felt like I had to. We were in this huge room with high ceilings, and Lilli's every angry noise seemed to echo off of the walls around us.<br />
<br />
"Oh, it's okay," she says.<br />
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Several more torturous minutes of pulling and crying go by. I don't sit in the chair to sign papers. I stand and hold tight to Lilli while I sign with the other hand, because she is pulling and trying to run away from me. She has already spied a glass door that leads outside and has run to it several times to leave the building. She might not be able to talk, but she is telling me loud and clear that every inch of her does not want to be here. I glance at a paper sign tacked to the side of the cubicle that has the internet wi-fi password, and for a second I almost cave and give her the iphone. Instead, I remain strong and try to memorize the password in case I need to use it later. If I give her the iphone now, there's no taking it from her without a huge scene.<br />
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Finally we are finished with the paperwork, and the woman points to the couches in the waiting area. As soon as we make it over to a red velvety couch, I pull out our mini DVD player and turn it on. The DVD player is way less addictive than the iphone. I cannot explain the difference very well but it's just different. Lilli quiets for a moment while she watches the menu screen pull up, and just then a door opens with a nurse saying, 'Lillianna?" It was so quick. Lilli hadn't even had a chance to calm down and watch the movie.<br />
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Crying starts again as we get up and I put the DVD player back in the bag.<br />
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Off we go, with Lilli pulling my arm and crying through the doorway. The nurse takes us to a scale and asks me if Lilli can handle stepping onto it.<br />
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"No. 60 pounds," I say, and I keep walking. Then I think,<i> maybe it's 65.</i><br />
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"We really need her accurate weight," she insists nicely. I put Lilli on the scale and she lets out a loud angry scream. Down another hall to the examining room. The sweet, pretty nurse tries to soothe Lilli. 'It's okay baby, no one's gonna hurt you, you're okay, sweet baby..." she coos at her repeatedly.<br />
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<i>I was wrong</i>, I think to myself. She's 63 pounds.<br />
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I ignore the nurse's cooing and scan the exam room carefully. Perfect, there is an outlet next to a small table. I put the dvd player on it, plug it in, and pull out three legos for Lilli. Lilli is all of the sudden content. She watches the movie and places her legos on the table in different positions. The nurse asks me a few questions. Then she asks why we are there.<br />
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"We just moved here. She is a new patient," I say. The nurse welcomes me and smiles. I can't find a smile at the moment. I'm on edge.<br />
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She leaves and I rummage around in my purse for a few things. I don't smoke, and I only rarely drink soda. I don't take meds. But I need something, anything to distract me and help with the anxiety. I don't even have a piece of gum.<br />
<br />
I know what I need. I need a Kit Kat.<br />
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I don't have a Kit Kat. So I take a drink of my bottled water.<br />
<br />
The doctor comes in softly. He shakes my hand. He says a kind hello to Lilli and pats her on the back. She glances sideways at him quickly. She is absolutely sizing him up. He is a soft, gentle talker and immediately begins to ask questions. I answer dozens of questions as best as I can. I am sitting in a chair in the corner, across from the doctor who is standing at a sort of makeshift podium, taking notes on everything I say. I smooth my black skirt over my knees (I dressed up to try and appear educated and concerned) and try to focus and answer every question very carefully.<br />
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Lilli is listening to every word I say. Occasionally she puts her hand on her neck as if to interject. She seems to be especially quiet and attentive when I tell her birth story. She has heard it many times. I hate for her to hear it as I tell about all of the scary things that happened at her birth. I do not try to soften it. I tell the facts. The number of times she stopped breathing. How the pediatrician figured out that she was having seizures in the nursery. She number of days she was in the NICU. The medications she took. The hospitalizations. The many scary seizures and all of the various kinds and symptoms. All of it I tell with no emotion. Just the facts.<br />
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He writes it all down as Elmo sings <i>Elmo's Song</i> in the background.<br />
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He asks more questions. What are her triggers. What are signs we notice before she has a seizure. He does not look at me like I am crazy as I tell him hesitantly that she has hiccups before seizures sometimes. He tells me that is certainly a sign of seizure activity. This is the first time I have ever had someone confirm the hunch we have had for years. I tell him as much as I can, in a calm, factual way. I describe what the different seizures look like.<br />
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I hate doing this in front of Lilli. She is listening.<br />
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I tell him that most of her seizures are when she is sleeping. Either napping or at night. He asks me how we monitor her to make sure she is not having a seizure in the middle of the night. I tell him that she sleeps in our room with us.<br />
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And then I have to stop talking for a moment and collect myself. Because this is one of the hardest issues we have faced. And I cannot help but feel beyond desperate for change and hope.<br />
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I tell him that we have tried many things, even waiting for several years for hope of a seizure alert dog. He shakes his head and tells me we should not put our complete hope and trust in a dog, that he prefers that we use a monitor. Again I cannot speak for a few seconds. I swallow and tell him that this is very difficult for us, to have her in our room and monitor her 24/7. But this is what we do, and this is how it is. We watch her.<br />
<br />
We talk about medication. We talk about surgery. He calls her seizures "Intractable Epilepsy." Which means that we have tried four medications that have not ever controlled her seizures. I tell him about how we do a special diet. I tell him how chiropractic helps. Her seizures have gotten better. But they have not stopped. I tell him that we have cut out as many triggers as possible.<br />
<br />
Still she has seizures. And she is on a medication that is causing her problems.<br />
<br />
We talk about getting her off of this medication. We talk for a very long time, and I am amazed at how much time he spends with me and with Lilli. It feels like he has no other patients at all. He does a few magic tricks for her with magnetic blocks on a string. She laughs and reaches up and hugs and kisses him on the forehead. Then he takes out three balls and juggles, and she looks away. He tosses a ball at her, and she does not even flinch. It lands on her lap. He pulls out a wind up snail, and makes funny comments about it. He winds it up and lets it walk down his leg. She looks away, silent and unsmiling. He takes out a flashlight and pretends to blow out the light. She turns and buries her face in my neck.<br />
<br />
"She has autism," he tells me gently. He does not know that I already know this. It's ok. I love that he spent time actually getting to know her instead of reading her file. It's refreshing.<br />
<br />
We will do tests and meet again and come up with a plan.<br />
<br />
We leave, and he gives her the magnetic toy to keep. She reaches up and smiles and hugs him. She wants him to pick her up. I can tell he likes her. She has succeeded in capturing his heart. I have never seen her interact with a specialist like this before.<br />
<br />
We go to check out, and she cries. We go to the lab and have blood drawn to check her medicine levels, and I hold her tightly in my lap and hold her arms as she thrashes against me and screams and cries with all her might. The two lab techs are fast and expertly draw blood. She freaks out about the bandage and tries to rip it off. We leave, and I cannot describe how relieved I am to leave that building. I'm sure Lilli is relieved too.<br />
<br />
I get in the car and get Lilli settled in her carseat, with a few cheesepuffs and a movie. Then I sit and take a big swig of water and eat the rest of the mini chips ahoy cookies I found in my bag. I sit and stare out of the windshield, worn out, eating cookies.<br />
<br />
This was one of our better doctor visits.<br />
<br />
As I drive home, I see mountains all around and ahead. I can't believe we live in such a beautiful place. I look up at the rolling green mountains ahead, and a verse pops right into my head. <i>I lift up my eyes to the mountains. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth.</i><br />
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<i><a href="http://4.bp.blogspot.com/-oFXGINWpbIA/VafORfTy2BI/AAAAAAAAA4U/31-6DqFtzgo/s1600/800px-Rainy_Blue_Ridge-27527.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-oFXGINWpbIA/VafORfTy2BI/AAAAAAAAA4U/31-6DqFtzgo/s640/800px-Rainy_Blue_Ridge-27527.jpg" width="640" /></a></i></div>
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<br />
What if God brought us to the mountains to help Lilli? What if I am looking at these hills and mountains and this place is the place where God has brought us to do huge things in Lilli's life? What if this doctor is going to really help Lilli?<br />
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My eyes well up with tears. I drive home, teary the whole way.<br />
<br />
Later when we are home, Lilli has a seizure. It is a small one. Short.<br />
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I think about the doctor, and the small new seed of hope about her medication he has planted that is already taking root deep within me. Maybe moving here will be a turning point for us. Maybe she will finally get off of this medication. Maybe she will even get her speech back. The words she used to say so many years ago echo distantly in my ears.<br />
<br />
She really said them, and I really heard them.<br />
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I think of how she would say "Go!" over and over as we bounced a beach ball back in forth down the hallway to each other. We used to play ball. She used to look at me and throw the ball purposely to me, and wait for it to come back.<br />
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I think of how we would change her diaper and laugh because she would imitate us and say the word "poop" in the most adorable voice ever.<br />
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There were more words too.<br />
<br />
She didn't have a ton of words, but she had them. And they all disappeared.<br />
<br />
Because the words were there once, I keep waiting for them to come back again. I keep hoping that her speech disappeared temporarily.<br />
<br />
Temporarily for ten years.<br />
<br />
Every time I look at the mountains, I think about the new hope we have here. I wonder what will happen here. I wonder what I will be writing about ten years from now about Lilli, telling all of the things that we experienced. What I hope I will be writing is that Lilli is saying words again. I hope her seizures are controlled, and infrequent. I hope that when she is 21, she has gained more control and independence in her life.<br />
<br />
I hope so much that when we are driving in the car together and she smiles and looks out the window, that I can say, "Why are you smiling, Lilli?"<br />
<br />
And she can tell me.<br />
<br /></div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com2tag:blogger.com,1999:blog-6544187541488651945.post-65743274682014303262015-07-16T10:27:00.001-04:002015-07-16T11:06:33.604-04:00My Tiny Wish for Autism Awareness<div dir="ltr" style="text-align: left;" trbidi="on">
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April 13, 2015</div>
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So…I missed World Autism Day this year. </div>
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I saw something about it on a facebook post, and I thought, <i>Oh, World Autism Day. Should we do something
for that? Cause…our lives are affected by autism and all that.<o:p></o:p></i></div>
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<i><br /></i></div>
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And then I didn’t do anything.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-E7XUCh4V3Uw/VUc5Uo4oVPI/AAAAAAAAA1s/HoTYTHPqbI0/s1600/wear%2Bblue.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-E7XUCh4V3Uw/VUc5Uo4oVPI/AAAAAAAAA1s/HoTYTHPqbI0/s1600/wear%2Bblue.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">OR.... I will be in my own world and completely forget and wear the same pair of jeans and top that I wore on April 1! Truth.</td></tr>
</tbody></table>
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I didn't put a blue light on, I didn't even wear a blue shirt that day. I’ve never owned a blue lightbulb, even though for the past few years,
I’ve thought to myself, <i>yeah, I should
get one of those cool blue lightbulbs and stick it in my porch light for April.</i>
</div>
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<i><br /></i></div>
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How hard is it to buy a blue lightbulb?<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-A1vzVap-8iE/VUc5NF9dXkI/AAAAAAAAA1k/fixVee-4iJI/s1600/light%2Bit%2Bup%2Bblue.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-A1vzVap-8iE/VUc5NF9dXkI/AAAAAAAAA1k/fixVee-4iJI/s320/light%2Bit%2Bup%2Bblue.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Or forget to.</td></tr>
</tbody></table>
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I did nothing about World Autism Day…because I guess I was just too distracted and busy helping my child
who has autism.<br />
<br />
That sounds like such a cop out. It sounds like I’m just saying
that, but it’s true. This was just over a month after we moved here, and we
were still not settled at all. So Autism Awareness Day was not even on my
radar, because I was still focused on moving a child who has autism to a new
house, new school, new everything. And that’s not easy.</div>
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I think that
awareness days are great. It’s good to be aware. It’s great if other people
know about autism. It has a purpose. </div>
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Coming from the perspective of a mom of a child who has
autism, I wanted to explain what my wish would be for “autism awareness.” It’s pretty small. Everyone can do it. Here it
is:</div>
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<i><b>I wish more people
would step out of their comfort zones for a few seconds to be kind to others in
public places. </b><o:p></o:p></i></div>
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I wish for tiny things:</div>
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A smile.</div>
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For someone to hold
the door for us. </div>
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For people to be kind and not stare. </div>
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For nice comments and compliments, not awkward questions and
comments. </div>
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I wish for strangers to be aware that there are those in this
world who need a little more help than most. I’m not asking for money, I’m not
asking for babysitting, I’m not asking you to buy my groceries, I’m talking about
a smile and some understanding.</div>
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If you see us coming, please hold the door for us. It’s
harder than you think for us to get through a non-automatic door to a store with a child who has a disability. In
the past week I have had at least two people look right at me and duck inside
quickly, while I struggled with a door and Lilli and a baby in a stroller.<br />
<br />
Don’t park in a handicap spot “for just a minute.” I’ll be pulling in shortly and I will have nowhere to park for Lilli. We really need that spot.<br />
<br />
If you see me struggling because Lilli is crying and I'm trying to leave the store, please don't stare at us and make me feel like a horrible mother. Say, "Can I help you in any way?" Or if that's too much for you, just smile at me like, <i>You've got this, I know you're doing the best you can.</i> and then keep focusing on your shopping instead of standing there, staring.<br />
<br /></div>
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I wish it wasn’t so darn hard to take Lilli out to public
places, but it is. Extremely hard sometimes. So I wish more strangers in those
public places would be kind. There are definitely nice strangers when we go
out. </div>
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Those are the people who I remember for a very long time. </div>
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You’d be surprised at the tiny efforts from complete
strangers that have completely affected my life and changed my entire day. If you ever show the tiniest bit of understanding or kindness to a mom of a child with special needs, believe me, she will remember that, and it will warm her heart and probably make her whole week. Your tiny efforts can change a life. That's why you see all of these "An Open Letter to the Person in line behind me at the Grocery Store" type blog posts. These are people who were so touched by the kindness of strangers, they were compelled to write about it. </div>
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It makes a huge difference, trust me. So when it comes to
“Autism Awareness,” well, I simply wish that everyone would be aware that just
<i>being</i> <i>kind</i> is absolutely huge. Personally, I think it’s way better than
buying a puzzle piece charm or slapping a bumper sticker on your car. Not that
there’s anything wrong with that, those things just have never affected me
personally.</div>
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<i>Kindness</i> affects me personally.<br />
<br />
Sometimes we are out in public and I feel the opposite of kindness. I feel "different." I feel like the struggle is completely mine alone, and no one wants to come within ten feet of us to get sucked into our world.<br />
<br />
That's a very lonely feeling.<br />
<br />
<h3 style="text-align: left;">
Locked Out of the House with a Potty Problem</h3>
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One day, we all went out as a family to run some errands. My
husband and I needed to get our new drivers licenses here since we moved to a
new state. I dropped my husband off at the DMV and left with the four kids to
go to the bank.</div>
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Sitting in the bank drive thru (I would never attempt to take all four children inside, because Lilli would not handle that well at all) I was leaning
too far out of the car window with one of those plastic tube things you put your
deposit in. As I reached and fumbled with the tube, Lilli began to cry. I knew she had to go to the bathroom. How did I
know? I just knew. It has taken years, but I am almost always right about the "potty cry" these days.<br />
<br />
Strapped into her oversized car seat, she cried and ran her
hands through her hair and put her hands over her ears in frustration. She
threw her head back and cried her angry cry. </div>
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My blood pressure began to rise.</div>
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The angry cry gets me every time. I get frantic to help her. I cannot listen to the angry cry.<br />
<br />
I started to drive towards our house (three minutes away) to take Lilli to the bathroom, but realized I did not have the house key. Dang it. <i>Who leaves the house without a house key? A person who just moved into a new house and hasn’t put the new key on their key ring yet, that’s who. Ugh.</i><br />
<i><br /></i>
My husband had the house key. He was sitting in the waiting room
at the DMV.<br />
<br />
“How many in front of you?”
I texted him quickly. I knew he had to take a short quiz on road signs,
because I had just taken it earlier that morning. He was still waiting for his number to be called. There is nothing quick about the DMV.<br />
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Prompted by increasingly loud angry crying, and knowing I was stuck until my husband got his license, I made a split
decision and swerved into the Kmart parking lot. </div>
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It was probably going to be a
bad decision. I knew this.</div>
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What should I do? Tell my daughter who I’ve worked for years
to potty train, “Whatever, just pee in your pull up.” Or should I take all four
of my children into a public place to use the restroom? </div>
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Any parent of a potty training child has been there. If you
want your child to learn to use the potty, you have to make these decisions,
and that’s why you end up swerving into parking lots.</div>
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“OK kids we are going into Kmart to take Lilli to the potty,
get ready,” I said. Really to myself more than to the kids.</div>
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When we pulled into the handicap parking space, I jumped
into action, barking out directions to Chloe and Josh. “Get your shoes on! Hurry
and get out! Stand here by the stroller. Hold this.” I really dislike how Lilli’s
mystery crying unnerves me in seconds and turns me into this kind of short,
impatient mother as I try everything to figure out what is wrong. I slid on
Lilli’s boots (the ones she wears everyday because they are easy to slip on and
off, and she won’t wear shoes when she’s riding in the car) and pulled her out
of her carseat.</div>
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Shoes and jackets on with baby in the stroller, Josh, Chloe,
Lilli and I hand hands nicely and crossed to the Kmart entrance.</div>
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No not really. </div>
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Really it was: I held Lilli’s upper part of her arm because
she hates having her hand held. (Sensory issues.) If I didn’t hold onto her arm,
she would walk away from me and could get hit by a car because she has zero
awareness of danger in roads and parking lots. I pushed the stroller with my
other hand and Chloe and Josh walked next to me while I said “Stay close to
me!” over and over to five year old Josh. Sometimes Chloe will hold Josh’s hand
for me. She ends up doing a lot of helping, simply because I don’t have enough
arms. One day, all of our arms together will be keeping
Lilli safe. I think about the future
often, and try to wrap my brain around the fact that the six month old baby I am pushing in a stroller will be
helping his big sister in a few years. </div>
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I try not to feel sad about that. That’s
the way it is. </div>
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As we entered the building, Lilli stopped crying. We made a
beeline for the customer service desk and the nice woman pointed to the
restrooms. We had to walk by a huge easter egg display which instantly made Josh slow to a snails' pace.<br />
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“Come on Josh, let’s go, we’ll look at those later,” I
repeated several times as I herded them to the restrooms. </div>
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In the women’s bathroom, I pulled out all the stops trying
to help Lilli go potty so that she would feel better. We have worked so hard
for all of these years on potty training. I don’t always talk about it, because
it’s just not something I think I should go into great detail about publicly. But I will
say that potty training Lilli has been a huge part of my everyday life for the
past…<i>seven</i> years now. And I see now
over the stretch of time, that we are getting there. We are. But it will take a
few more years. Maybe even seven more. </div>
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I will not give up. Everything that
takes days, weeks, or months with a typically developing child takes years with
Lilli. I think about when I potty trained Chloe, who is now eight. I’d say that Lilli is
right around where Chloe was after I’d been training Chloe for just a few days. <br />
<br />
So a few days of a typically developing child equals seven years with Lilli. Or more.</div>
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A therapist once told me, “Even if it takes until she is
twenty years old to become potty trained, if she lives to be eighty, that’s
sixty years of not having to wipe her bottom.” </div>
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Yes. That made total sense to me. At that moment, I decided
I would potty train her for as long as it took. </div>
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Progress. That’s all I can ever hope for. Even if it takes
forever.</div>
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Lilli was dry, but
she also has trouble going in public places. New bathrooms throw her off. Lots
of kids have this issue. Many adults do too, right?</div>
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Our luck, we had the bathroom to ourselves. I belted out the
Veggie Tales theme song and Chloe joined in singing with me while she pushed
the stroller in a small circle near the sinks and smiled at the baby. I love that Chloe. She doesn’t
even know how awesome she is. Josh used the other bathroom stall. Then came out and washed his hands without me
prompting him and waited with Chloe and Nate. </div>
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Lilli still wouldn’t go. I pulled out my phone and put
Lilli’s latest Youtube favorite on: <i>Veggie
Tales Madame Blueberry – Part 3 - in Spanish</i>. I held it out and did a
little tap dance there in the handicap stall for her, trying to make her laugh and relax so she could pee.</div>
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Nothing. After about ten minutes, I gave up. <i>Maybe that wasn’t why she was crying</i>, I
thought, stumped.</div>
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Josh held the
bathroom door open for us, Chloe pushed Nate’s stroller out, and I held Lilli’s
arm and guided her out and around the hallway out to the store. Lilli was quiet
now. She seemed okay. As always, I was mystified. It drives me crazy that I
don’t know what she wants to say.</div>
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Chloe and Josh wanted
to look for “Mystery Surprise Eggs,” which is some silly thing they had seen on Youtube of some lady opening up all kinds of plastic eggs
with toys and candy inside. So far we have not found them in a store. So we
went to an aisle where I thought Mystery Surprise Eggs might be if they had
them, and that’s when Lilli fell to the floor and began to sob loudly. She had
my phone in her hand, and something was wrong with the youtube video and it
wouldn’t play. She threw my phone down the aisle and screamed. </div>
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My internal “let’s get out of here now” alarm went off.</div>
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“Time to go, let’s go let’s go!” I said to Josh and Chloe in
a low tone, purposely calm sounding, but
urgent at the same time. This situation wasn’t going to get any better. I retrieved my phone from down the aisle and turned the baby's stroller to go. Josh and Chloe were riveted to the candy shelf, looking at those silly stick
containers of candy with plastic fans on the top. They were ignoring me. They are so used to
Lilli’s crying that they are not even phased by it. I grabbed Josh’s hand and
tried to drag him away as I wrestled with screaming, tantruming Lilli with the other arm
and pushed the stroller with my elbows. By the time we made it to the registers to get
to the exit, everyone in all the lines were standing dead still, staring at
Lilli, and staring at me. It felt like there was no other sound in the store
except Lilli. If we lived in the 80s, I'm sure I would’ve heard a record screech.<br />
<br />
Time stopped for just a second as I took in the instant
realization that we now live in a small town, and everyone here knows everyone
else, and now I will be judged by my mothering skills by people who know who we are when out with my melting-down
autistic child in any public place. I had moved from a city where it was much easier to remain somewhat anonymous. I realized that there was little anonymity here.</div>
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I also realized, that I cannot take Lilli back to Kmart. Not for awhile, anyway.<br />
<br />
There was not much that anyone in that store could have done to help me. Except that no one offered to help me. They just stared at us and made me feel bad. No one smiled. No one moved. I think they were stunned.<br />
<br />
But things do not always turn out like this. Sometimes, people are <i>kind.</i><br />
<i><br /></i>
<h3 style="text-align: left;">
Simple Kindness Goes a Long Way</h3>
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Last Saturday
morning, we all went to the downtown to watch a huge bike race. We were going
to split up and I would stay home with Lilli, because we didn't know how she would do. We don't like to split up as a family, but we have found that splitting up can make it easier in case Lilli has a meltdown.<br />
<br />
I really wanted to be together as a whole family, so I came up with a plan. We would all go together. If
Lilli got fussy, I would leave with Lilli and Nate, and meet Jasen and Chloe and
Josh to pick them up later. We took the oversized jogging stroller for Lilli so
she wouldn’t have to walk the whole time. She prefers to walk, but only for small amounts of time. She gets tired and overwhelmed when walking in crowded public events, so we use the stroller sometimes.<br />
<br />
Pushing two strollers, we walked
around town, saw the bike racers take off, and then strolled to check out our
new main street and the shops. It was relaxing, and the kids were great. We
loved being out together as a whole family, which is not something we get to do
often. <br />
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We split up for a short while on the sidewalk and I took
Nate, Josh and Chloe into a shop while Jasen walked around with Lilli. When we
met back up, Jasen commented, “I cannot believe how many people walked by and
just stared at Lilli. No waving, no saying hello, no smiling at her or at me.
Just plain staring.” </div>
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“Yeah, it’s a bummer,” I said. “I guess we won’t ever get
used to that.”</div>
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While we were in the adorable downtown toy store, Lilli got
mad and we knew the trip was done for her. I was happy to take Nate and Lilli
back to the van while Jasen helped Josh and Chloe decide what to spend their
allowances on. Trust me, I had the better deal – those two take forever to
decide. We had tried to show different things to Lilli in the toy store,
thinking she might like them. Jasen took her out of the stroller and showed her the Lego display, but they were all in boxes, so that just made her mad. Her anger was quickly escalating and we needed to leave. We have
learned that when she reaches this point, we've got to just go.</div>
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I walked down the
main street sidewalk pushing Lilli’s big jogging stroller with one hand, and
pulling Nate’s lightweight stroller behind me with the other. Some people
walked past me and smiled. Some made comments. One woman made me smile as she
said, “Oh, let me get out of your way cause I’m a slow walker, and wow, you are
extremely talented!” I was so glad she didn’t tell me <i>I had my hands full</i>, because that comment gets old to a mom after
awhile. At a corner, I stood with the two strollers parked and waited for the
“walk” light. A nice man came over to me and made a big deal out of Nate and
Lilli, saying hello right to Lilli and complimenting her. I love it so much
when strangers are kind. He asked me if he could help push one of the strollers
across the road for me. </div>
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“I’ve got it, thanks.” I smiled. But man, did that make me
feel good.</div>
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It is priceless when people see Lilli and smile… and don’t
stop and stare rudely. People who say things like:</div>
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“Hi, what a beautiful girl!”</div>
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“I love your outfit!”</div>
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“You’re the big sister, aren’t you lucky?”</div>
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These people totally make my day.</div>
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People who acknowledge me and say “Do you need help? Here
let me get the door for you,” are blessings.<br />
<br />
Nothing is better than the gift of
help with a door, and a warm smile. Even
when I sometimes decline the help, I love the offers. I cannot emphasize enough how huge it is to have someone hold the door for us.</div>
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Compliments like “You
must be a proud momma of all these beautiful children,” make my anxiety
dissolve and give me a bit of strength to get through the outing. </div>
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If this blog post makes a small difference in anyone’s day,
then I will feel accomplished. The simple act of kindness. This is what I wish for. Because no one can really
ever take away the anxiety that Lilli feels, or that I feel when we go out in
public. And honestly, even I do not always know what to do when Lilli gets angry or starts to cry when we are out in public.<br />
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But a little bit of kindness does make a world of difference. And it’s free. It’s easy. No one has to buy a little paper puzzle piece, wear a t-shirt…</div>
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or buy a blue light bulb.</div>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com4tag:blogger.com,1999:blog-6544187541488651945.post-72499267743361148342015-07-16T09:57:00.003-04:002015-07-16T10:02:26.947-04:00Giving up Homeschooling, and Unraveling from FB posts (Weeks 3 and 4 after moving)<div dir="ltr" style="text-align: left;" trbidi="on">
<b>The Third Week.</b><br />
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The snow melted, and the phone calls began. I spent hours on the phone.<br />
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Days of phone calls. Note-taking. Websites. Forms. Applications.<br />
<br />
Now that I am posting this months later, I can update and say that I spent four solid months doing this every single weekday. The process is quite unbelievable for moving a special needs child to a different state. I have spent an enormous amount of time on the phone. I spent at least 2-3 hours every weekday for over a month solid, making phone calls about Lilli. Then it tapered off to about an hour a day, or two.<br />
<br />
Really.<br />
<br />
I'd been through all this before, so I thought it wouldn't be so bad.<br />
<br />
I was wrong.<br />
<br />
Anyone who has a child with special needs can sympathize: when it comes to switching to a new state, nothing can be more frustrating than dealing with insurance, government and state agencies. Every state handles things differently. There are different programs, waiting lists, and information is scattered and hard to find. In summary, it's kind of like this:<br />
<br />
1.make phone calls (endless annoying automated systems with no people to help and being put on hold forever or transferred from person to person)<br />
2. take notes on what those people tell you to do.<br />
3. call the people those people told you to call, and re-explain to them what your situation is with your child.<br />
4. Those people tell you something completely different that conflicts with what the first people told you, and you have to start over.<br />
5. Repeat steps 1-4 about five more times. Or more. Seriously.<br />
<br />
<br />
Josh and Chloe were starting to get stir crazy, from two weeks of being off schedule from moving, and no pre-school for Josh. They fought and chased each other through the house trying to hit each other.<br />
<br />
Lilli watched movie after movie as I sat at the table with stacks of paperwork spread out and scribbled furiously in a notebooks while balancing my phone with my shoulder and holding the baby on my lap. Unbelievably, I was able to get Chloe to do <i>some</i> homeschooling work. But not too much.<br />
<br />
I unpacked more. I did more laundry. I was desperate for organization, all the while knowing that we would not be "organized" for many months.<br />
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Everyone was off schedule. I felt very stressed, discouraged, and homesick for the way things were before.<br />
<br />
One agency I called, I spoke to a woman and explained about Lilli. I told her what Lilli had qualified for in our previous state, based on her disability. She told me nothing like that existed here. Nothing? <i>Nothing</i>. I hung up and cried. I wanted to move back to our old state. (Several weeks and phone calls later, I found out she was wrong. Very wrong.)<br />
<br />
One week later, after many phone calls and tears, I had to call and postpone Lilli's appointment with the new neurologist here. I felt panicky about her seizure medication, prescriptions running out, and getting new health insurance coverage. Transferring things over, like her medical equipment and her specialists, and her therapies, well that was just not easy at all.<br />
<br />
I spent hours online researching, trying to figure things out.<br />
<br />
My phone rang, and it was a woman who had randomly overheard a conversation by the nurses in the new neurologist's office, about how I had to postpone the appointment. She said, "I think I can help you. Tell me about your daughter."<br />
<br />
Like a superhero, she swooped in and saved me. She told me, "Yes, I am familiar with that program Lilli had in your previous state. We have that here. It just has a different name. Here is the name and number of a person you can call who knows what they are talking about. He will enter information about Lilli and get things rolling."<br />
<br />
Finally.<br />
<br />
Next came many appointments and stacks of paperwork including two 20 page applications and a stack of other forms, and countless more phone calls. It wasn't any easier, but at least I knew what direction I should head now.<br />
<br />
And I didn't need to move back over state lines after all.<br />
<br />
<b>The Fourth Week</b><br />
<b><br /></b>I reached my breaking point. I could not do all of this anymore. Something had to give.<br />
<br />
I had to give up homeschooling Chloe.<br />
<br />
In a moment of peak frustration, feeling overwhelmed about everything, I unloaded on my husband when he came home for lunch.<br />
<br />
"I can't do all of this. This is no way to live," I told him.<br />
<br />
All of that time on the phone, filling out forms, and searching online, I felt like I was ignoring my children and Chloe's schoolwork was not getting done. The kids were fighting and Lilli was crying and floundering. I had to figure out everything for Lilli, and it was a full time job. I had done a much better job homeschooling Chloe with a newborn right after my c-section. This was crazy.<br />
<br />
"I'm enrolling Chloe in school," I said. And Chloe was fine with it.<br />
<br />
She was ready to go and meet some friends and do something different. I think even she sensed that Mommy was overwhelmed and the situation wasn't good. So two days later, she started school. On a Friday. It's a tiny school, a free public charter school. On her first day, we pulled up and everyone already knew her name and welcomed her warmly.<br />
<br />
The campus where the school meets is gorgeous. I pass two lakes as I drive through the car line. Chloe gets art twice a week, music twice a week, and even a dance class. She made new friends right away, and she was thrilled.<br />
<br />
I teared up after dropping her off that first day. At least I could feel good about this. It was a good school. She was happy to go. I loved homeschooling her and we did do a lot of great things this year.<br />
<br />
But now things have changed. And it's OK. I am doing the best I can.<br />
<br />
There was a strange small nagging sense of failure I had trouble shaking, about giving up homeschooling. I cannot really explain it. It was like a dream dying. It was a tiny bit akin to a massive pinterest fail. It was like I had moved out of one camp (the public school camp) into the homeschool camp, and then left that camp too. Like I had pushed ourselves away from both sides, disappointing others and inviting silent judgement from many. This sounds all so dramatic (which I am) but it felt a little like we had good friends in two different cliques in high school, but now we did not belong to either one.<br />
<br />
I still believe in the amazing, wonderful, powerful experience of homeschooling. I wish I could do it. I did the best I could. I think I did a pretty darn good job for much of the time. I learned more about what Chloe actually knows and can do than I had ever known before. We spent more quality time together than we ever had. It was not all roses, as we had many moody moments together. But I cherish the entire experience we had. I am glad we did it. I just wish I could have kept homeschooling her, and doing it<i> well. </i>I could not do it well with a crying child in the background of every moment of our day, on hold with the insurance company and distracted by a mound of paperwork.<br />
<br />
Maybe another mom who used to homeschool and had to give it up understands how I feel. I just never saw it coming - that I would not make it to the end of the year. I loved homeschooling so much, but to do it well, it is very hard. I had a baby right in the middle of it. Still, we made it through. Our tumultuous time of moving had been tough, and I thought we would get through that too. We almost did.<br />
<br />
What I could not handle was Lilli, and the extreme stress that piled on.<br />
<br />
I pretty much had a meltdown about what was happening with Lilli, and knew that life could not continue like that for all of us for even one more week.<br />
<br />
I wondered if I had done a good job. I didn't have to wonder for long. Chloe took a placement test and scored very high. I felt relieved. Her new teacher was very loving, and not at all like "What kind of parent are you, moving at the end of the school year?" She was extremely kind, loving, and encouraging. She loved Chloe instantly. She also never gave me the feeling of "Oh, you <i>homeschooled</i> her...huh." She was pleased with what Chloe already knew.<br />
<br />
So it was done. Chloe went to school. Next it was Lilli's turn. Then I would find a preschool for Josh.<br />
<br />
More calls about schools for Josh, and several more meetings with the school about Lilli. It was a busy time, and my stress level continued to increase even though we seemed to be making progress.<br />
<br />
<h3 style="text-align: left;">
My Facebook Mistake</h3>
<br />
I made a big mistake. During my "down time," which was when I was sitting and nursing the baby, I got on Facebook. I read article after article. I don't know why I do this. I am not the type of facebook user who trolls other people's pages. I read the articles people post, and the related articles, and I read the comments from other people who also read the articles.<br />
<br />
This was not a good thing for me to be doing, because I ended up reading a bunch of articles that had to do with autism. Some were about special needs children who were abused by their teachers at school and, thankfully, caught. Some were about studies and research done on people with autism. I read comments in one article and could not believe the negativity. The bashing. The meanness. I sat and read through dozens, maybe a hundred comments. Heaping negativity upon myself by simply reading it. <i>Obviously none of those commenters has a child at home with autism</i>, I thought. Not only was I overwhelmed with the stress of all of this other special needs "stuff" I had going on in my life, I was reading negative comments by dozens of strangers who thought it was ok to publicly insult parents of children with autism.<br />
<br />
In my post about the first week of our move, I wrote about how I was reaching my mental breaking point. So ridiculous, but facebook pushed me even farther to losing it. I had to take a break. Social media can be great. It also can be terrible.<br />
<br />
I guess I'm telling you all of this because I know many other people are affected in similar ways.<br />
<br />
Feeling stressed? Don't get on Facebook. You will feel more stressed. Unless you strictly watch funny animal videos.<br />
<br />
Feeling overwhelmed? Stay off Facebook. Other people's negative posts will overwhelm you even more.<br />
<br />
Feeling depressed? Avoid Facebook. More doom and gloom articles on there than the evening news.<br />
<br />
Maybe it's just my feed. Maybe it's just how Facebook works, that the more certain articles you look at about certain subjects, the more Facebook assumes you want to read even MORE about that same subject. So I guess I got trapped in a Facebook hole of depressing, stressful posts and it made matters worse for me.<br />
<br />
I am still struggling with this issue. I am not sure how to change my feed so that it comes up all kittens scaring each other and jumping three feet in the air, and funny dogs eating ice cream cones in one bite. Maybe someone can give me advice on that.<br />
<br />
Or maybe, <i>maybe</i>, I should just simply stay off Facebook in general. But I would miss my friends. Facebook has ease to it. I need ease in my life. I cannot write emails to each individual friend all the time. I rarely talk on the phone now. I use "speak to text" when I text. Facebook is easy. It's a love-hate thing, I guess. You have to take the good with the bad. But when the bad starts to overwhelm me, I have to take a break for awhile.<br />
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The good news is, the break helped. There is such a thing as a Facebook diet. It's like eating too much junk food. Take a break from it for awhile and it helps.<br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-89727475388810266052015-07-16T09:09:00.003-04:002015-07-16T09:09:35.423-04:00The Second Week: From Elementary to Middle School<div dir="ltr" style="text-align: left;" trbidi="on">
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<h3 style="text-align: left;">
<b>The Second Week. March 2015</b></h3>
<br />
Moving to another state is not an over night process. At least not for this family. We have been back and forth, back and forth. The second week we were here, we were still driving back. A lot was happening in both places. We drove back for dance class, for Josh and Lilli's last days of school to say goodbye to their friends, and getting our old house ready to rent out. We celebrated my mother in law's birthday. I had my first meeting with the new school district about Lilli. Lilli had two more seizures. I unpacked, cleaned, and did mounds of laundry, catching up from not having the washer and dryer for just a few days.<br />
<br />
Lilli's last day of school at her old school was on Thursday morning, after we'd already been at our new house for over a week. She had missed her last day two weeks before, because school had been cancelled for days from of all the snow and ice. Josh had missed being student of the week and taking his birthday cupcakes in to his class because of the snow days. Lilli's class had all made things for her and wanted to see her to say goodbye.<br />
<br />
Even though we had already moved away, I felt like it was important for both Josh and Lilli to go back and see their classmates and teachers one last time. So we made the trip back, with cupcakes for Josh's class in a cooler.<br />
<br />
<h3 style="text-align: left;">
The School Goal</h3>
<br />
Before school that morning, I get Lilli dressed in one of her coolest Justice outfits, with her boots. I do her hair, and get her little backpack purse ready that she wears with her ipod inside and earbuds, in case she feels anxious. Sometimes Ms. Leslie will put one earbud in for Lilli to listen to her favorite music, and it calms her down. There are also her favorite Legos in the purse - the ones with windows.<br />
<br />
As we drive to the school, I give Lilli my usual pre-school pep talk.<br />
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<i>Just enjoy being there. There's no pressure. Just smile and be happy, and hug your friends. Ms. Leslie will come and get you, and it will be just a short visit. I'll wait out front. You look adorable. Have fun. Tell Ms. Leslie with your NovaChat if you have to use the bathroom. I love you. It'll be great.</i><br />
<br />
Lilli sits in the back of the van, silently. I have to do all the talking because she can't answer me. It makes me feel like I talk too much. She looks out the window. I wish I knew what she was thinking. If I had a dime for every time I think this to myself. Maybe she appreciates my pep talk. Maybe she wants me to just be quiet already.<br />
<br />
When we pull up, Ms. Leslie comes right out to meet us. I tell her that I'm a little nervous because another snowstorm is supposed to begin in the next few hours, and I need to get on the highway soon to drive the hour and a half back over the mountain to our new home. I help get Lilli out of her seat and out of the van. She starts to make happy sounds, and hops with delight at being back at her old school with her favorite teacher. She's all smiles and excitement, awkwardly jumping up and down. She flings her arms around Ms. Leslie and squeezes her tightly. She and Leslie walk together into the building, and I watch Lilli's back before she disappears through the double doors. Lilli is gloriously happy. She is walking her happy walk.<br />
<br />
I haven't seen her this happy since before we moved. After a week of crying, it is like the sun has come out from behind the clouds. It's like a Lilli rainbow. It makes me so happy, I want to cry. But no crying from anyone today, this is a big day.<br />
<br />
<i>This is what I want for her, </i>I think.<i> <b>This</b></i>.<i> Being happy to go to school and see friends. I want her to be happy. I want to see her bounce into school, all smiles like this.</i><br />
<br />
I decide right then and there, that this is my new goal for Lilli. To be happy to go to school. I don't even care what they do in her new school. I want her to be happy again.<br />
<br />
She comes out later, still bouncing and all smiles. Leslie says she had a wonderful time.<br />
<br />
I drive my four children onto the highway, anxious to beat the snow, and Lilli is on cloud nine, smiling and laughing in her carseat on the back row. I keep smiling at her in the rear view mirror. She had a wonderful day. When we get home to our new house in the mountains an hour and a half later, we go through the little gift bag that her teacher and classmates gave her. Inside are handmade cards from all twelve classmates, and a bubble kit. I sit at the dining room table and read every one of the sweet cards out loud to Lilli and her dad. We both make a big deal out of it. Chloe makes a huge deal out of all of her sister's cards. Lilli puts her hand on her neck like she has so much to say, over and over, and smiles. She doesn't smile at us, she smiles at the carpet. But she is smiling at what we are saying. She is sitting on the floor, looking at her legos. She is so super happy.<br />
<br />
I tell my husband about the day, and how I want so much for Lilli to be happy going to school here. I need to prepare what I'm going to say at the meeting about Lilli the next morning, and we talk about it.<br />
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We agree that this school meeting will be different than any other we've ever had.<br />
<br />
<h3 style="text-align: left;">
Meeting at Lilli's New School</h3>
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The next morning, I leave with purpose. But anxiety is notably absent from the things I typically take along to a school meeting about Lilli.<br />
<br />
The meeting is unexpectedly relaxed. They offer me a cup of coffee in the cozy, creaky old schoolhouse building that had been turned into offices. There are hardwood floors and old clanking radiators. I find the restroom and feel like I am walking straight into 1960. In the bathroom, there is an ancient physician's scale, and wheely carts with long-unused overhead projectors parked in a corner used for storage.<br />
<br />
It feels oddly comfortable in this warm old creaky school building.<br />
<br />
I had thought a lot about what I wanted to say. In the past, I would have shown up to a meeting with all kinds of paperwork, notes and goals, and prepared proof of all the things she can do. Friends have seen me with all of my notes and prepared requests. I would have had an "I'm here to focus on all the many things my daughter needs and prove what she can already do" attitude. But this time around, Jasen and I had decided we just wanted one, simple thing for Lilli.<br />
<br />
We wanted her to be <i>happy</i>. Happy at school. Just happy.<br />
<br />
I never thought I would be at this point, after all the goals we have been striving for over the years to get her to communicate and function independently. In past meetings over the years, I have been organized with binders full of information, lists of goals, videos of Lilli's therapies on my laptop, and a serious,<i> let's aim for the unbelievable</i> attitude. Not this time.<br />
<br />
I told the nice people in our new school district that this was what we wanted.<br />
<br />
Simple happiness.<br />
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I told them about Lilli's last day at school, how I had taken her to see her friends and say goodbye, and how she looked to me as I watched her happily walk into the building with her backpack on. That we want that for her here.<br />
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The goals, the therapies, the academics, the hard work with trying to communicate, to use a communication device and type words and sentences...that will all come later.<br />
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Let's work on having Lilli simply go to school, meeting new friends, and being happy first.<br />
<br />
I tell them about what Lilli is like.<br />
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I take out pictures of Lilli at school and pass them around. They oh and ah about how cute she is. I tell them the awesome things I love about her. I tell them how smart she is, and how amazing she is.<br />
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These are pictures are the pictures I showed them. They pass them around the table.<br />
<br />
I take out a picture of our family. I want the new people in this new school district to get a good sense of who we are. I don't want Lilli's crying to obscure how awesome Lilli can be. I want her to make a good first impression, but I worry that it won't go well. So I show them pictures of her being happy at school and happy with our family.<br />
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And then I tell them that she will likely feel anxious and cry in the beginning. Because she has been crying since we moved. I prepare them for the worst. I tell them that she might scream and sob and throw herself on the floor. That she might push and pull on people. That she might not do anything academic for anyone for a long time. And that I'm okay with that. Because we have decided that after this <a href="http://wherelilliblooms.blogspot.com/2015/02/driving-and-moving-towards-our-new-life.html" target="_blank"><span style="color: magenta;">awful past fall that she had</span></a>, we do not want to pressure Lilli. We want her to get comfortable in her new surroundings and feel relaxed and positive about coming to school first. The other stuff will come later.<br />
<br />
They tell me that they are prepared for meltdowns, that they will not be fazed by it. That they have seen it all. They are excited to meet Lilli. We all decide that it would be better for Lilli to start going to the middle school right away, rather than spend April and May at the elementary school only to have to transition to the middle school in August anyway.<br />
<br />
The school nurse is at this meeting. She is amazingly comforting and thorough. She is loving and familiar, like a dear aunt. She tells me not to worry. We talk about Lilli's seizures. This school district is so very different than the last one, when it comes to seizures. Everyone has been trained on what to do. All of Lilli's teachers - the therapists, the teacher assistants, even the gym teacher is trained and prepared to jump into action if Lilli should have a seizure. There are other students in Lilli's class who have seizures. Everyone is prepared. The director of special education takes me over to see the middle school and meet everyone there. I meet the principal first. He is extremely laid back and friendly. He is not at all intimidated about Lilli's special needs. He is welcoming and kind, with a good sense of humor. He also tells me that <i>he</i> is trained to help if a student has a seizure.<br />
<br />
I feel better already about this. I see the classroom, and I meet the teachers and students. As the special ed director, the principal and I all enter the self contained classroom, some of the students come over to greet us.<br />
<br />
My first impression: <i>these kids are huge. </i><br />
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My immediate next impression: <i>these kids are awesome.</i><br />
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I meet a boy who has autism, who comes right to me and shakes my hand and says, "Hi, how are you?" They tell me later that he has learned to do this because he used to try and hug everyone. And not everyone wants to be hugged when they first meet someone. I think about Lilli. How she tries to hug and literally climb up certain people to throw her arms around their neck - practically into a headlock - even strangers sometimes if she likes something about them. I think about how Lilli needs to learn to shake hands when she meets someone.<br />
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I really like this kid. Lilli will like him too.<br />
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I like this class already. I don't realize it at the time, but another boy who comes over to greet me, is my next door neighbor. His teacher tells me that he loves legos. I think he is absolutely adorable, and I know Lilli will like him.<br />
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I see friends in this class for Lilli. Another girl is in a wheelchair. She can't talk. She has seizures. She flaps her hands and makes a loud excited noise. I tell her <i>hi, it's nice to meet you.</i><br />
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Lilli will have a lot in common with these kids. She will fit in here just fine, even if she is tiny compared to these kids.<br />
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A few years ago, I might have had nervousness about Lilli going into this class for different reasons. Now, I am looking forward to seeing how this all turns out. Even though there is an absolutely huge eight grader that will tower over Lilli. (He told me a knock knock joke that didn't make any sense when I first met him. I liked him instantly.)<br />
<br />
Even though she might not love everything about this new school, I think she will like a lot of things about it.<br />
<br />
Later, the principal and director of special education talk with me out in the hallway. I confess that I am worried about how big all the kids are, and how tiny Lilli is. They assure me that <i>this is middle school</i>. Kids come in starting out small, and then they have growth spurts and get much bigger. I guess I had forgotten all about that growth spurt stuff.<br />
<br />
Lilli is little. She is Chloe's size, only skinnier, and Chloe is eight. The biggest boy in this class is taller than I am. He's a big kid.<br />
<br />
This is going to be interesting.<br />
<br />
I come home and tell Lilli all about her new school and her teacher. She smiles at the carpet and puts her hand on her neck.<br />
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I think she is ready for this. I <i>might</i> be ready for it.<br />
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I guess this is what happens when your child starts to grow up. <i>Middle school happens.</i><br />
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Yikes.<br />
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-24997342981629404502015-07-12T06:59:00.001-04:002015-07-12T09:02:40.212-04:00The First Week: "It Will Get Better."<div dir="ltr" style="text-align: left;" trbidi="on">
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<b>The First Week. March 2015</b><br />
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Her constant crying is heartbreaking. I feel sorry for her, I feel sorry for me, even though that's so awful of me to have a personal pity party. You might think, <i>geez girl, it’s only a little crying, just ignore it.</i> But has been several days straight of this. For hours at a time, everyday.<br />
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Just...straight crying.<br />
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Sometimes it's sad crying. Sometimes it's angry crying. </div>
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It is wearing on me mentally. I can figure out what is going on if it's one of my other children crying. The baby's easy. Change him. Nurse him. He's good. Josh and Chloe? A hug for a boo boo. They can tell me what is bothering them. Is it a crying tantrum? I can easily ignore a tantrum from my other children. Just walk out of the room.<br />
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But not with Lilli.<br />
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As always, this is different. It's not a tantrum. It's so much emotion wrapped up into one small outlet. She cries and hands me a movie case. Lilli cries because she wants a movie. But there is much more beneath the surface. The movie is just her way of escaping. She is trying to find her place here in our new surroundings. New house for her to navigate. The furniture is haphazardly placed temporarily. Stacks of boxes in every room. She is tripping and climbing around things, and trying to figure out what to do with herself. She might be crying because she is completely thrown off in every way from this move. She misses her old familiar house and things.<br />
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This is all so new.<br />
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She might have a million things to say, like, <i>I don't like this house. I don't know where anything is. I miss our old life, our old house. </i><br />
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Her crying is unnerving to me. Lilli has always affected me differently than my other kids. I cannot figure her out, even after all these years. She cannot consistently, effectively communicate to me, even after everything we have tried. It's still a guessing game much of the time. Sometimes I just don't know what she wants to tell me, and her frustration can completely unravel me in mere seconds.<br />
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I have learned over the years that I need to explain things to her. It took me way too long to learn this. When you have a child who does not speak, you sometimes lose sight of how much they need you to explain everything to them anyway. Just like any other kid. And also, it's hard to explain something to someone who cannot talk back to you. It takes some getting used to. You don't know if she's listening or if she understands, if you're insulting her because she already knows, or if she is even more confused and has questions she cannot ask. I explain something as I drive in the quiet car, hearing only myself talk, and then...silence. No feedback. Never know what she thinks about what I just told her.<br />
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I give Lilli pep talks. I tell her things will get better as we unpack and get settled and learn about our new town... that it will not always be like this.<br />
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I tell myself this, too.<br />
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I am strong, but only in certain situations. And only for a certain length of time. After awhile, I start to break down a little myself. I really think anyone would if they were in my shoes.</div>
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Lilli is not handling this move well at all.</div>
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During the crying, (and in-between unpacking), I try different things. I spend time with her, I talk to her, I try to help her. She keeps crying. I ask her questions that she cannot answer. She gets mad and pushes me. Then I try ignoring her.<br />
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Nothing works.<br />
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I think questions to myself. But they do not have question marks, because I know that there are no answers.</div>
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<i>Why.</i><br />
<i>What should I do.</i><br />
<i>How can I help her.</i></div>
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<i>What if it’s always like this.</i></div>
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She is completely lost. No schedule. All I can handle in this mess is feeding the kids. Everything is a wreck with piles everywhere.<br />
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I know she is bored. She’s unhappy. She's even angry at times. This is not what she is used to, and her routine is totally thrown off. Routine and predictability are important to Lilli. And a familiar place, with familiar people coming to see her, like her teachers and therapists.<br />
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She has none of those right now.<br />
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Little things make her mad. Like the fact that she can't turn on the light switch in the new bathroom, because it's a dial...from the dark ages. Well, no, just the 60s. <br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-vGP06eMXPBQ/VYgVTR1AXWI/AAAAAAAAA3Y/qDPQY-33aN0/s1600/image1%2B%25281%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-vGP06eMXPBQ/VYgVTR1AXWI/AAAAAAAAA3Y/qDPQY-33aN0/s320/image1%2B%25281%2529.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The bathroom light switch. Really?</td></tr>
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She doesn't know where the light switch is in her new room, because it's behind a huge tower of stuff.<br />
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She trips over something in every room. I try to clear paths between boxes and piles, but there is just so much. I try to concentrate on unpacking one area, and it makes me just want to sit down and cry. I try a different method of unpacking randomly as I go from room to room with the kids. I try getting Chloe and Josh to help me unpack.<br />
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No, that doesn't work.</div>
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I have been unpacking and cleaning, and my husband is working. I don’t know where everything is, and the disorganization and stacks of boxes are making me crazy. I cannot pay enough attention to my four, differently-needy children right now. I'm trying to make this house a functional home. Thankfully, Josh and Chloe play together and entertain each other for hours. The baby sleeps in the swing in-between feedings. But Lilli has only so many things she can do for self-entertainment. We've got movies, music, and legos. That's about it right now. You think, <i>well that's okay. That sounds fine.</i> But come to my house and tell Lilli, "Well...you've been watching the same Sesame Street movie over and over for about six hours straight now, it's time to take a break and turn it off for a little while."<br />
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You'd see.<br />
<br />
It's just not the same as with Josh and Chloe. I can send them off to do any number of things. <i>Unpack this box. No, no more movies right now. Put these books on that shelf. Unload the dishwasher. Okay now go outside together and run around in the yard. </i>I'm so thankful they have each other and they play so well together.<br />
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Lilli doesn't play with them. Lilli doesn't know how. Chloe tries to play with Lilli, bless her. Josh is still figuring Lilli out. He doesn't understand.</div>
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Lilli has been pushing me a lot lately. As in actual, physical pushing. She hardly ever does this. She will pull us to things she wants, but pushing, well, that's different. Pushing comes when she is extremely unhappy and frustrated. Pushing is the lowest, simplest way of her telling me that she wants something or does not want something. It used to not be such a big deal, because she was little. We’ve always said, <i>Don’t push, Lilli. Use words.</i></div>
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Which isn’t really the right thing to say, because she has no words.</div>
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Now she is bigger. She is eleven. She can practically push me over onto the floor if I don't see it coming. Her communication device can only do so much. When she is crying mad, she doesn’t use it very well. I’m sure if I were having a complete sobbing meltdown, I would not be able to type or text very well.<br />
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She didn’t use to push this much. It’s increased in the last few months. Really since the new homebound teachers and our difficult fall began. And now the move. She has so much frustration, and pushing is a way she uses to get us to “listen” to her.</div>
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Whatever it was that made Lilli melt down into anger and tears on this particular morning during our first official week in our new house (and I really do not know), our day begins horribly, with angry crying soon after everyone wakes up. Maybe she just is mad that we are still here in this new place. And she just wants an old favorite movie to block out all the newness.<br />
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I don't know.</div>
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Chloe comments, “This sound, I’ve heard it all of my life and I <i>hate</i> it!” The sound being the screaming and crying. There is nowhere to get away from it in the house. I am determined to not give her a movie the second she wakes up. We have tried so hard to cut back on her screen time. We know it isn't good for her.</div>
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The crying continues for an hour and a half. Throughout that time, I put various music on to try and calm her down, make a batch of pancakes for all the kids, and try to clean up the kitchen. She follows me around, crying and pushing me. I walk her back to her room several times, thinking she can play in there and calm herself down. Her sobs escalate into screams and growls of anger. I know if she could talk, she would tell me off.</div>
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It is unnerving and I feel like I might lose my mind.</div>
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Finally, calm. She comes to me with the Nova Chat, her communication device, silently held out to me. I turn it on for her. It has a tiny button on the top, and she still cannot turn on herself, I dislike that very much. It takes away her independence. She tells me she wants to watch <i>Learning about Letters</i>, a movie she has had for at least six years and has watched hundreds of times.</div>
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I give her the movie.<br />
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I give it to her because it has been a long time, for Lilli. An hour and a half is a long time for her to try and calm herself down and do nothing but wait. She is now calm, and she is finally asking for it in a nice way. I want her to learn to ask for something without pushing, screaming and crying. This is much more difficult than it seems. It takes extreme patience and consistency.<br />
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I am not very good at it.<br />
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It is much easier to just give her a movie and get her to stop crying. It is much harder to wait until she finally gets through all the emotions (which can last for a long time) and comes to me silently, calmly with her communication device to ask for a movie.<br />
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Some might think,<i> Sheesh, you just moved, your lives are all turned upside down... just give her the dang movie, don't make her wait and cry.</i><br />
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But I would respond, <i>you do not know all there is to know about this situation. </i>When she woke up and angrily started crying and pushing me, I could not just give her a movie. Wouldn't that teach her that all she has to do is cry and push me, and she gets a movie for that behavior? And trust me, I mess this up all the time.<br />
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All the time. ALL THE TIME.<br />
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Some days I am consistent and strong. Organized. I have plenty of caffeine pumping through me and I've had time to wake up and get mentally prepared. Other days I am surviving, and I give in because I am overwhelmed.<br />
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It is a difficult, daily struggle with Lilli. If I let her, she would watch movies every second of her entire life. We are always trying to get her to try to do something else. It's not easy. It's <i>not at all</i> like when I tell my other kids to turn it off and go do something else. Lilli's not independent like they are.<br />
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Her movies are comforting to her. Most of the time, she doesn’t even sit and watch it. She just wants it on in the background, kind of like when people put on the radio. Many times she begs for a movie, and then as soon as I push “play,” she walks right out of the room. We did not understand this about Lilli for a long time. I think it is the familiarity of it…the fact that she can probably recite every line in her head, she knows what is coming next in each scene. Maybe it’s like listening to a favorite song.<br />
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It is predictable.</div>
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Unlike her entire life right now with this move and all of the changes.</div>
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She plays with her Duplo legos on the floor next to the movie. She can’t really make anything out of the legos, she just places them differently all around on top of pillows and blankets and books. In the past year, she learned to put two square Legos together. But she still can’t build anything with them. Not yet. I hope she will one day.</div>
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Anyway, that was Monday.</div>
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The next three days were the same.<br />
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Crying. Screaming. Pushing. Frustrated. Movies.<br />
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I am so discouraged. I didn’t know this transition would be so difficult for Lilli. I am writing this down because I hope that one day I can look at it and say, <i>Look, see? It got better. It started out pretty tough. That first week? Wow, glad we won't have to go through that again. But it got way better.</i></div>
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I hope that’s true.</div>
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We officially moved a week ago, on a Friday. </div>
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We moved on one of the coldest days of the year, and when we arrived, our steep driveway was covered in a sheet of ice. The U-Haul truck, that my husband slowly backed down the driveway, got stuck. It skidded on the ice backwards crookedly into a stump in the yard, and there was no going up or down. On Saturday, he and the friend who helped us move went to three different stores to find rock salt, which was sold out almost everywhere. They were out there with the one shovel we had, and the rock salt. They got the U-Haul out, but had to put the washer, dryer, freezer, and piano up on our carport. They had to stay there until the ice melted and we could find a way to get them all back down the other driveway to the lower level of our house. (As I write this, the piano is still out there. One of these days we will find someone who will be willing to help us move it down the driveway.)<br />
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<tr><td><a href="http://2.bp.blogspot.com/-jx8FPw2YtMU/VP7SqntleYI/AAAAAAAAAz4/bYLNuWmjSsM/s1600/photo%2B(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://2.bp.blogspot.com/-jx8FPw2YtMU/VP7SqntleYI/AAAAAAAAAz4/bYLNuWmjSsM/s1600/photo%2B(2).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">Stump behind the back right tire. </td></tr>
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We plugged the freezer in through the living room window and stuffed a Superman beach towel in the window crack. With all these appliances and a piano on the carport, it looked really trashy. We sure were glad to be making such a good first impression on our new neighbors. All we needed was a couch out in the driveway and a few six packs.</div>
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Then it began to snow like crazy. Beautiful thick fluffy flakes fell from the gray sky for hours, and made my new neighborhood peaceful and still, covered with quiet whiteness. Chloe and Josh were ecstatic to go out in it. They spent hours in it, sledding and building snowmen.</div>
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On Tuesday morning, I felt inspired to take Lilli out in the snow. I hoped she would like it, but I can never predict. Josh and Chloe had already been out in it since breakfast. When my husband came home from work on his lunch break, I left the baby inside with him and bundled Lilli up and took her out in the snowy front yard. </div>
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<tr><td><a href="http://2.bp.blogspot.com/-4yIwCIrlqAI/VP7SriMxjLI/AAAAAAAAA0A/PPgARUco54o/s1600/photo%2B(4).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-4yIwCIrlqAI/VP7SriMxjLI/AAAAAAAAA0A/PPgARUco54o/s1600/photo%2B(4).JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">Two children are happy, one is not.<br />
This was a brief moment of "I'm not miserable, but I'm not exactly thrilled about this."</td></tr>
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She was quiet for a moment as she checked it out. Then, she began to cry and walk to the front door.<br />
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I said to my husband, “Why don’t you take her down our driveway on the sled, maybe she will like that.” At least our steep icy driveway was good for sledding.</div>
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<tr><td><a href="http://1.bp.blogspot.com/-HdSQN4Rg1l8/VP7Spyi977I/AAAAAAAAAzs/_WI6SyvSqWs/s1600/photo%2B(3).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://1.bp.blogspot.com/-HdSQN4Rg1l8/VP7Spyi977I/AAAAAAAAAzs/_WI6SyvSqWs/s1600/photo%2B(3).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">Josh and Chloe. The driveway is under there somewhere. And that stump.<br />
At least the U-haul is gone.</td></tr>
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She didn’t like it.<br />
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I stood at the bedroom window with the baby on my hip, taking videos of all of them sledding down the hill. Lilli was silent, sitting in my husband’s lap as he sledded with her on the saucer. When they got to the bottom, she cried and walked to the house. He looked up at me in the window and put his arms up in the air like, <i>I tried.</i></div>
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Lilli hates cold weather. So we didn’t take her back out.</div>
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After my husband went back to work, I put Lilli in bed for a nap. I positioned the video monitor on her face, and went to take care of the baby. I was watching Josh and Chloe play with the neighborhood kids in the front yard, out in front of our big picture window in the living room. Chloe came running across the lawn toward the door, crying. She’d been hit in the face with a snowball. I hugged her and gave her a little love and a pep talk, and sent her back. As she walked away, I glanced at the video monitor, and became filled with dread. I turned and ran to Lilli in the bedroom.<br />
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She was having a seizure.<br />
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She was okay afterwards, but I was not.</div>
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Later that night, after my husband got home from work, I drove out in the snow to get a box of diapers from Wal-Mart. Growing up in the north, it is not intimidating for me to drive out in a little snow. No one was on the roads, even though they were fine. I had the store practically to myself. I wandered in the eerily empty Wal- Mart for a little too long, carrying my box of diapers and looking for nothing else, really. Just shopping for calmness. A moment to myself.<br />
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When I pulled back into my white driveway, I turned off the engine and just sat there. Not really thinking about anything. Just feeling drained. From the moving. The unpacking. The boxes everywhere. The constant crying. The seizures. Trying to homeschool Chloe in the midst of all of this. (What am I, crazy?)<br />
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<i>We will get through this.</i><br />
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When I finally got out of the car, I stood there and looked up at the night sky with the snow drifting down onto my face. I looked at my warm, lit up house and saw my children through the large picture window in the living room. I wasn’t quite ready to go back in yet. I saw Chloe chase Josh by the window. He must have taken something that belonged to her, again. Lilli came into view, stepping awkwardly over things that were scattered all over the floor. Her movie was playing on the tv. My husband was in our not-completely unpacked kitchen, trying to start dinner while keeping the baby entertained in the exersaucer.</div>
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I took a long, deep breath and looked up at the branches of the trees silhouetted against the twilight sky. Fluffy snowflakes landed on my face. I wanted to stay out there longer, in that peaceful night snowfall. I didn't really have any deep thoughts. I just wanted to be still.<br />
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In those rare moments of being still... in the quiet, I remember that God sees me. That he sees all of this. That He knows this is not easy. But that He alone is the One who can give me hope. And He is there. Always.<br />
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For a few brief seconds, I close my eyes and remember this.<br />
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I do not feel better. I do not feel renewed. I still feel drained.<br />
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But I just remember.<br />
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Truth is the same whether you <i>feel</i> it or not. We need to hang on to the knowledge of truth through the rough times, when our dark feelings get in the way. God brought us here. He has plans for us here. I remind myself of these things.</div>
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<tr><td><a href="http://4.bp.blogspot.com/-RHWJUHhWjFM/VP7StvmKinI/AAAAAAAAA0I/eORCGA0irQA/s1600/photo%2B(5).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://4.bp.blogspot.com/-RHWJUHhWjFM/VP7StvmKinI/AAAAAAAAA0I/eORCGA0irQA/s1600/photo%2B(5).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">Chloe and Josh building a snowman.</td></tr>
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This first week has been very emotional and stressful for me. Aside from the unpacking and complete mess, I'm nursing a baby who is completely off schedule from the move and not sleeping through the night. Lilli’s constant crying and frustration is unraveling me. I feel lost with her. I don’t know what to do. Maybe this is how parents feel when their babies have colic. It’s draining. It’s depressing. It’s frustrating. It’s exhausting in every way possible, physically and emotionally. I feel like I need someone to swoop in with a superhero cape and save Lilli from being so frustrated and unhappy. I knew the move would be tough, but I was thinking only about the actual <i>move</i> itself. As in, the heavy boxes and stuff.</div>
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I hadn’t thought about how Lilli would cope with everything being new.</div>
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All I can do is hope that it will get better, and I will look back on these days and be glad we got through it.</div>
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<tr><td><a href="http://4.bp.blogspot.com/-q4gvBnisXKQ/VP7SpoEK8JI/AAAAAAAAAzo/GZ6tzcpCbbs/s1600/photo%2B(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-q4gvBnisXKQ/VP7SpoEK8JI/AAAAAAAAAzo/GZ6tzcpCbbs/s1600/photo%2B(1).JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">This was the night our heater broke and we had to lay mattresses down, find every blanket we had, and sleep in the kitchen, using the oven to keep warm. Had no firewood to use the fireplace, but even if we had, it would've been a tough decision because smoke triggers Lilli's seizures. Anyway we have heat now, so that's a good thing. My kids will remember this night as a "cool" slumber party. Note the piles of boxes around us, </td></tr>
</tbody></table>
<br />
Smack in the middle of this first week, my redheaded little four year old boy turned five. We pushed every other thing going on out of the way temporarily to bake him a chocolate cake with Skylanders on top, and wish him a happy fifth birthday. When he remembers this time, I want him to only remember that he had one of the best weeks of his first five years of life, sledding down a huge hill with his sister for hours on end all week long in his new neighborhood, with new friends that live right across the street.<br />
<br />
It doesn't matter that I am extremely stressed, and kind of homesick even. Chloe and Josh are ecstatic to be here. They are in heaven, loving everything about being in this new place. They are not complaining about moving. They are excited about their new rooms, their new friends, the new house, and the tons of snow. This was such a good change for them.<br />
<br />
I desperately want it to be a good change for Lilli. It is difficult for her right now, but there must be something good for her in this new town. Everything is still unknown for her right now, with school, therapies, and who she will meet here. Will she meet new friends? Will she be able to go to school? We have many questions to answer in the next few weeks and months.<br />
<br />
I remind myself of what I wrote in February, that I believe it will be <i>better</i> for Lilli. That there are surprises waiting for her in this new place.<br />
<br />
The unknown in life can be scary, yes, but it also can give you hope for something good. For something different. For new chances. In a few months, I want to write these words:<br />
<i><br /></i>
<i>Look, see? It got better.</i><br />
<br /></div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-67257886139823109202015-06-22T08:12:00.001-04:002015-06-22T08:12:04.547-04:00The New Folks in Town<div dir="ltr" style="text-align: left;" trbidi="on">
We have been here in this new town for almost four months now.<br />
<br />
It is a very small town. I am torn between posting about it and keeping things move private now, because it is so small. If anyone in this little town begins to read my blog, I might feel like I cannot share things openly like I once did.<br />
<br />
Small towns are different.<br />
<br />
My husband and I met in a small town fifteen years ago. I am quickly being reminded of small town talk as we get settled in here. Everyone knows everyone. Everyone is connected in some way. In one meeting I had with Lilli's new teacher and several therapists, we were wrapping up the discussion and I said, "If you want more information about Lilli or you need anything, feel free to call me." And one of the therapists joked, "Oh, well, I know where you live." And another therapist said, "Yes, we <i>all</i> know where you live."<br />
<br />
I smiled and laughed. We all laughed. It was funny, but inside I was really thinking, <i>What?! How do they all know where I live?</i><br />
<br />
It's been a few months since that meeting.<br />
<br />
Now I know. Everyone here knows where everyone lives.<br />
<br />
We are the new family in town. People know who we are. Our neighbors are connected to us through school or through my husband's practice. Strangers have come up to me and asked me if I am Jasen's wife. They recognized me from my picture at the office. Phone calls I have made for various reasons have surprised me with reactions of people already knowing of us. One call I made about enrolling Josh in preschool, when I told the person our last name: "Ohh! <i>I</i> know who you are!" I visited a church one Sunday (Jasen stayed home with Lilli as we have to take turns visiting new churches right now). I snuck in late and thought nobody saw me. I was wrong. After the service I was surrounded by six people who already knew who I was. <i>"Excuse me, are you Dr. ________'s wife? I thought so!"</i><br />
<br />
It's almost kind of intimidating, to know that people know who I am already, when I don't know anyone. This is because my husband came here long before I did, commuting for about eight months before we finally moved here. He has met a lot of people through his work. His practice is well known in town, and word travels fast.<br />
<br />
It may prove to be a wonderful thing for my children, to grow up in such a small, close knit community. It also could make me paranoid about things, knowing that not too much is really private in this town. After living in a more densely populated area near a small city for the past five and a half years, I do have an appreciation for being somewhat anonymous in a community. Especially when shopping and running errands.<br />
<br />
My husband hasn't helped this issue at all, as he decided to advertise his business on the shopping carts at the local grocery store here. This happened a month before we moved, when he had still been commuting. He thought it would be a good idea to advertise in a place where everyone goes, because we were going to be new in town. He took a picture of the two of us holding baby Nate and put that on the ad.<br />
<br />
The first time I went to the grocery store after we moved here, I went to get a cart and I almost fell over. I gasped in shock, and then laughed at the rows and rows of carts lined up, all with my picture on every... single... cart.<br />
<br />
<i>Great.</i> So much for anonymous grocery shopping.<br />
<br />
I pushed my cart through the dairy section and an older man looked straight at me and smiled.<br />
<br />
<i>Well, this is something,</i> I thought. <i>He is either</i><br />
<i><br /></i>
<i>1. Just a nice friendly, smiling man who is being nice to strangers</i><br />
<i>2. A creepy guy checking me out</i><br />
<i>or </i><br />
<i>3. He recognizes me from my picture on every single cart in the store.</i><br />
<br />
I'll never know for sure.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-6pxsWoTH1Zo/VUH3N6Ydl0I/AAAAAAAAA0g/Ox-OamWZ9Yw/s1600/IMG_4017.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-6pxsWoTH1Zo/VUH3N6Ydl0I/AAAAAAAAA0g/Ox-OamWZ9Yw/s1600/IMG_4017.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh my. Who the heck are those people? I'm covering that up with my purse.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-VKYiA1SdaSU/VUH51txiqcI/AAAAAAAAA00/WFBrZoKhueA/s1600/cart%2B2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-VKYiA1SdaSU/VUH51txiqcI/AAAAAAAAA00/WFBrZoKhueA/s1600/cart%2B2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Why is that woman taking a picture of her grocery cart? What a total weirdo.</td></tr>
</tbody></table>
<br />
You might know from reading about my shopping experiences with Lilli that I prefer to keep our shopping trips short and anti-social, because Lilli has a very hard time with going to stores. "Hard time" meaning: loud crying, shrieking, pushing, collapsing on the floor, running away. As if shopping is pure agony. (It is to many people, we just don't all act out our feelings.) We almost always draw a lot of attention to ourselves. I have not attempted to take her to this grocery store with me yet in our first four months of living here.<br />
<br />
That day will come eventually. (Maybe.) But for now, I am happy about the fact that the grocery store is two minutes from our new house, and I can leave the kids with my husband and dart out by myself to pick up food.<br />
<br />
The ads were only supposed to be on all the carts for one month, but a bunch of them are still hanging around. Maybe the ones that were in the far corners of the parking lot on the day they were supposed to be changed. Last week I had Josh, Chloe and Nate with me at the grocery store while Lilli was at summer tutoring for an hour. As I pulled out my wallet to pay, Chloe said loudly to Josh, "LOOK! Josh! That's mom and dad on the grocery cart!" She pointed to the cart at the end of the register next to us. "SEE? SEE? Look, it's Baby Nate!"<br />
<br />
"Yes I SEE!" yelled Josh. Both of them looked at the cart and discussed it loudly for another moment.<br />
<br />
I just kept on rummaging through my purse. <i>Crazy kids. I don't know what they're talking about.</i><br />
<br />
I have several posts that I've written since we moved here, that I will be putting up here soon. At first I held back from posting them, because I did not want to be a downer. Things started out pretty tough here for Lilli. I even wrote the gentler version with some of the crazier stuff edited out. I can't put it ALL out there, I never know who is reading this stuff. I knew it was going to be tough, but I didn't know that the beginning would be <i>that</i> challenging.<br />
<br />
But as I had hoped and prayed, things did get better. And they are still getting better every week. Just so you know I am being genuine, life always has its ups and downs and when I say it is "better," I don't mean it's all rainbows and fluffy clouds and kittens all the time. It's better because we are through the tough transition period.<br />
<br />
Well, sorta. Almost through.<br />
<br />
So things are settling down a little. I wanted you to know about how things got better, instead of leaving you all hanging.<br />
<br />
It is a new adventure. The story isn't over yet.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /></div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0tag:blogger.com,1999:blog-6544187541488651945.post-53140232399875293742015-02-15T09:03:00.000-05:002015-02-15T09:03:35.558-05:00Driving and Moving Towards Our New Life<div dir="ltr" style="text-align: left;" trbidi="on">
I am driving on a mountain road, following my husband's car. I have all four of our children, who happen to be sleeping or quiet at the moment. My husband has our dog and a bunch of empty boxes, which we spent all weekend unloading at our new house. We are driving back to our old house. We will fill these boxes back up, to get ready for our last big trip up in two weeks.<br />
<br />
I am excited, hopeful, and also concerned at the same time for this big move. Moving means new hope to me. New opportunities for Lilli. New opportunities for all of us. I have decided that instead of being scared of the unknown, that I am going to be hopeful. Hopeful for her new school and new teachers. Hopeful for some real friends for Lilli. More time together as a family. More chances for us to relax and enjoy each other. More rest. These are things we dream about and talk about often.<br />
<br />
Most of my dreams are focused on Lilli at the moment. We just had an IEP meeting for her, looking ahead for next year. This has been a very rough school year for her, so I am hoping it will get much better in this new place.<br />
<br />
My rear view mirror is tilted just-so, focused on Lilli who is sleeping in her oversized special needs carseat. Every few minutes, my eyes glance over to the Diastat kit (emergency medicine to stop a seizure) which is sitting on the center console next to me. I know that it is there, but I can't help but continue to make sure. It's a nervous habit I've developed over the years. She had a seizure at the new house this weekend, on the air mattress we are using to sleep on the floor. Maybe that is partly why I am so paranoid as I drive. Maybe it's because of all the unpacking, and being off schedule. We never really know for sure.<br />
<br />
We are exhausted. But this is currently our "normal." We are used to it.<br />
<br />
I know that my husband is watching us carefully in his rear view mirror right now. If I make the slightest move to slow down or move to the side of the road, he will pull over immediately and leap out of his car, running to mine. Seizures in the car have happened so many times before, I have lost count. One of those times, we were moving. He was driving the big Penske truck in front of me. I was driving the mini van with Lilli and Chloe, and Josh was seven months away from being born. We were inching forward in a traffic jam on the interstate.<br />
<br />
I saw Lilli start to have a seizure in the rear view mirror, and I swerved to the shoulder. Jasen swerved the truck over too, and ran back to me. I called 911, but I didn't know where we were. Chloe was yanking on her car seat straps, yelling about having to go potty. People drove by slowly in the thick traffic and gawked.<br />
<br />
I even remember what I was wearing that day. It was July. I was wearing a blue sundress, and it was hot. Nauseous with morning sickness, I ran down the shoulder of the road in the windy heat to see the number on the next mile marker sign, so I could tell the 911 operator where we were so an ambulance could get to us.<br />
<br />
To this day, when Lilli falls asleep in the car, I make a mental note of each exit as I drive on the highway, in case I need to call 911 and tell them exactly where we are.<br />
<br />
It's experiences like this that make me high strung and paranoid.<br />
<br />
As I drive, I think about the past six months and how much we have experienced. I have been quiet on this blog for a long time now, deeply troubled by a negative reaction to a past post. I haven't stopped writing. Just stopped posting. Tentatively, I will start to open back up a little bit.<br />
<br />
I will look back on these past six months and say that it was a season filled with <i>extremes</i>.<br />
<br />
<b>Extreme joy. </b>We had our fourth baby in September. He is a beautiful, healthy baby boy who has done nothing but make me smile since he arrived. His name, Nathanael, means "Gift from God," He is laid back, easily soothed, and he fits right into our noisy, busy lives and goes with the flow. Quite a gift.<br />
<br />
<b>Extreme exhaustion</b>. We have been packing, moving, painting, and traveling back and forth from the new house (an hour and a half away, with a newborn) since December. Moving OR having a newborn are each a big deal by themselves. Put them both together and you have to hang onto your sanity with a tight grip.<br />
<br />
<b>Extreme frustration.</b> Lilli's school year will be difficult to describe. I do not think I can covey the amount of daily meltdowns, screaming, tears, and frustration around here in the past six months with school. It was not like this in the past three years.<br />
<br />
I am afraid I started getting used to it.<br />
<br />
And it's not supposed to be like this.<br />
<br />
In the beginning, I braced myself for it each day because I figured it was a transition. I assumed it would get better. I never saw Lilli act like that for her past teacher, Ms. Leslie. I figured, <i>new teachers, new routine... it will get better eventually. </i><br />
<br />
It didn't get better.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: center;"><tbody>
<tr><td><a href="http://1.bp.blogspot.com/-myzxk-_Wsbw/VMov23bB1OI/AAAAAAAAAyU/gQLxLsZiIdc/s1600/IMG_2504.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-myzxk-_Wsbw/VMov23bB1OI/AAAAAAAAAyU/gQLxLsZiIdc/s1600/IMG_2504.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">At the pumpkin farm we go to every fall. Lilli hated it. Even though it's heartbreaking, I chose this picture because it sums up our fall. Lilli was pretty much extremely unhappy for most of it. Josh and Chloe were happy, and the baby slept for most of it. The entire fall, I'm talking about, not just the pumpkin farm.<br />
<br />
<br /></td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
Even this week, screaming and crying that hurts my heart and makes <i>me</i> want to cry. It seems so unfair that after all the progress Lilli has made in school, that we would lose it all in just a few months' time. We took huge steps backward. I really struggled to remain positive this past fall. It was hard to remain hopeful about her academic progress, even after everything we have experienced with Lilli. I felt like the gains we had made were all slipping away. One person suggested that Lilli did not "regress" so much as she just <i>stopped progressing. </i><br />
<br />
I'm not so sure about that.<br />
<br />
I believe this school year has been particularly challenging because everything was NEW for Lilli. And <i>new</i> is not necessarily good for a child with autism who likes everything to be the <i>same</i>.<br />
<br />
We had been with the same teacher and therapist for three years, and then everything changed. Lilli also no longer had ABA therapy hours. This felt like a huge empty hole in our days. I felt like she was floundering, forgetting many of the skills she had worked so hard to gain. I was overwhelmed to suddenly not have that support in our lives. As a result, I felt like I could not keep up. I had to prioritize.<br />
<br />
No, it was more like survival.<br />
<br />
All that work to keep her shoes on? Gone. She's barefoot again. The ABA therapist's awesome success with Lilli putting her own earbuds in and listening to music? Not happening. Watching too many movies and not enough books? Yep. Meltdowns, tears and anger are daily now with school. If anyone reading this has the least amount of judgement in their mind, please keep reading my blog. You are the reason I write.<br />
<br />
School this year - still homebound services in our home - was a new time of day (afternoon, which totally stunk but that was all that was offered to us). Last year it was 8 am to 11, and it worked perfectly. This year it was 3 pm to 6 pm. All parents of young children who lose their minds just before dinnerime, let that time sink in for a minute.<br />
<br />
New teachers - three new homebound teachers. That was honestly the hardest part.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-XjPO8U9JEho/VN3hdu3sdgI/AAAAAAAAAy4/U0DQ-Qc2VHo/s1600/IMG_2058.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-XjPO8U9JEho/VN3hdu3sdgI/AAAAAAAAAy4/U0DQ-Qc2VHo/s1600/IMG_2058.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This girl. Oh Chloe, you have no idea what an <br />
amazing sister you are. </td></tr>
</tbody></table>
And our schedule was totally new and different. My husband started a new job with a new schedule which required him to commute 3 hours each day. It's a <i>great</i> job. We are so thankful for it. But it was another change. We were used to having him come home on his lunchbreak, and home for dinner. Now, he was gone from 6:30 am until 7:30 or 8 pm, and this brought new stresses into our situation. I know Lilli was affected by it. It was a long day for all of us, with Lilli having school at the end of the day. That is partly why I say it was survival.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-BO3-G8hsd7U/VN3hetHl0BI/AAAAAAAAAy8/gD8wXTXD3hc/s1600/IMG_2056.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-BO3-G8hsd7U/VN3hetHl0BI/AAAAAAAAAy8/gD8wXTXD3hc/s1600/IMG_2056.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Let me tell you what you might miss in this<br />
picture. We are standing in a parking lot<br />
at the local museum.<br />
Chloe is holding onto Lilli with a tight<br />
grip so that Lilli will not run away, into the<br />
parking lot that is busy with cars.<br />
Yes, Chloe is different. She has Lilli for a<br />
big sister. She gets it. </td></tr>
</tbody></table>
The biggest change for Lilli was that we were about to have a new<i> </i>baby. Lilli had been through it three times before, but it was a challenge each time for her to have her mom morph into a huge, waddling, moody, tired mama. Lilli requires a lot of physical help with bathing, dressing, toileting, and some lifting. She still wants to be picked up. You can tell her no, but she will literally climb up you like you are a tree. I just couldn't be the same mom for her while I was pregnant.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="http://4.bp.blogspot.com/-ISAHp4B4v6U/VMot9v080VI/AAAAAAAAAyE/Y_J00BCfToU/s1600/IMG_2072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-ISAHp4B4v6U/VMot9v080VI/AAAAAAAAAyE/Y_J00BCfToU/s1600/IMG_2072.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">Right before Nate was born in September.<br />
I know what you're all thinking. Pop!<br />
Don't ever, ever say the word "pop" to a pregnant woman.<br />
I'm dead serious.</td></tr>
</tbody></table>
<br />
<br />
Changes in routine can be tough for anyone, especially children. But it can completely throw a person with autism off for the entire day.<br />
<br />
Or as in our case, the entire season of autumn 2014.<br />
<br />
Lilli's new baby brother arrived at the end of September. Lilli absolutely needs consistency and routine, and there was very little of that around here with a newborn.<br />
<br />
On top of all the big new stuff, we found out that Lilli had been dealing with <i>new</i> teeth.<br />
<br />
In mid-December, I took Lilli to the dentist, who told me that Lilli had lost several molars since her last appointment six months ago. What?! Never saw a molar fall out. Tooth fairy didn't know to come. Holy mackerel, no wonder tooth brushing time was such a challenge. This is the kind of thing that happens with a non verbal child. The dentist estimated that the teeth were lost two to three months ago and the new ones started coming in. (How do you lose molars unnoticed? But it happens. One night Jasen found one of Lilli's molars in his work bag. We don't know how it got there, or when. It was a beautiful, perfect pearly white. We put it under her pillow for her and she got her tooth money.) So Lilli had been suffering with loose molars, lost them, and had tender gums with new teeth coming in around the same exact time that she lost her ABA therapist and got new homebound teachers at a new time of day, and a new baby brother.<br />
<br />
No wonder she cried a lot this fall.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
We had even taken her to have a doctor check up, but nothing was said about teeth. We thought she didn't like her new teachers. And maybe she didn't. We thought she was having trouble with all the changes. And probably she was.<br />
<div class="separator" style="clear: both; text-align: center;">
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<br />
Even the room in our house where she had school changed because one of the new teachers was male, and I felt uncomfortable with the idea of Lilli being closed back in her bedroom with him at the end of the hall. So we moved school out to the sunroom, with a windowed storm door to keep things feeling separate. This might seem like not a big deal, but when everything else in Lilli's world was changing, this was one more adjustment for her to cope with.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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Every day during school, Lilli pressed her face up against the other side of the glass storm door to the sunroom, sobbing, looking into the kitchen with pleading eyes like she was a caged, tortured animal. It would almost have been funny, the way her cheeks and mouth pressed against the glass, except that it was absolutely heartbreaking. I <i>hated</i> that she hated school now. She was not like this at all for the last three years with Leslie.<br />
<br />
Behind Lilli, on the other side of the door, the new teachers tried to figure Lilli out.<br />
<br />
It takes a <i>very</i> long time to figure Lilli out.<br />
<br />
Our only saving grace with school was that Lilli's previous teacher, Leslie, was still connected to her, but in a new way now. Leslie came to briefly visit twice a week to assist the new teachers in the transition. We also arranged for Leslie to be Lilli's assistant for the one hour she went to visit the school each week. When Leslie was here visiting, Lilli was happy. But as soon as Leslie would leave, Lilli would almost always fall apart and sob.<br />
<br />
Whenever people asked me how it was going with the new baby, I always said the same thing. "The baby's easy! It's Lilli that's hard." I really meant that. I tried to remain hopeful, but I began to dread Lilli's afternoon school time.<br />
<br />
I would be sitting in the rocking chair in the living room with my sweet new baby, completely stressed to the core by listening to Lilli's growly screams and shrieking crying. This happened every day. Sometimes she cried angrily for long periods of time. Sometimes she would bang on the door and sob with sorrow. I cannot describe how stressful, puzzling, heartbreaking, and upsetting those hours have been, for months straight.<br />
<br />
Often I went out to the sunroom, carrying the baby, and tried to see if I could help. Sometimes I thought it might be best to leave them alone and not intervene. Some days I have been teary and discouraged. Some days I have just been mad. I have wondered, <i>why couldn't someone else just figure it out?</i> Some days I have been frustrated with Lilli because of acting this way for the new teachers. Was she manipulating them? I was sick of trying to figure it out. I was tired of making suggestions, tired of Lilli tantruming and crying every day. I was just... tired in every way possible.<br />
<br />
The days were long. I would think about wives who had husbands that traveled for work or served in the military for months at a time, and tell myself to quit complaining, that I had it good. My mother in law was my lifeline, and came over to help me in many ways. A small church that we do not even go to sent us delicious home-cooked meals for two weeks, and I will never get over their kindness. They had no idea how much they helped us during those chaotic afternoon-dinnertime hours. I am not sure how we would've survived without the help of that church, and my in laws.<br />
<br />
At one point in November, I said to my husband after another awful school afternoon, "These teachers are going to quit. I just know it. No one would hang in there after all this time of crying and doing nothing."<br />
<br />
And sure enough, one did quit. He said it was because of other reasons but I wouldn't have blamed him for giving up. I overheard him through the storm door one day saying firmly, "Point to the number 6, Lilli. No, the 6. No, that's not the 6. Look. Point to the number 6."<br />
<br />
This was crazy to me. Lilli knows numbers. Lilli can do addition and subtraction. He was taking it down to the simplest level of number identification. She would not point to anything he asked. It was obvious that he was frustrated with her. She would not do math for him, or anything else. She would not do any of the things we told him she could do. Did people think I was making it up? Oh yes, she can do math! <i>Sure. </i>For <i>three solid months</i>, every day for three hours a day, he never saw her do anything other than cry, chew on Legos, and play on Starfall.com.<br />
<br />
In the beginning, I was highly motivated to convince the new teachers of how much Lilli has going on in her mind. I kept saying, "She's smart. She can do math. She has been doing addition, subtraction, multiplcation, and fractions. She is doing 3rd and 4th grade spelling words. She likes to be read to, and Leslie used to read grade level social studies and science books to her." I <i>knew</i> I wasn't crazy. Three professionals had just spent the last three years seeing all of what Lilli could do.<br />
<br />
I felt stupid after a few months. She never showed the new teachers that she was capable of any of that. I stopped saying, "She used to..." because it seemed hopeless. I didn't know why Lilli wouldn't show them. Here she was supposed to take a computerized grade level state test in the fall, and she wouldn't even point to the number six.<br />
<br />
She had completely shut down.<br />
<br />
I continued to tell Lilli that she needed to show other people how smart she is. She needed to prove to others that she could do this schoolwork, so that her teachers would continue to believe in her. Lilli didn't seem to care about that. She was just angry. I didn't know what was going on with her, I only knew that she was incredibly unhappy and frustrated.<br />
<br />
The director of special education even came to our house for two days and observed, trying to help. Then we got a new teacher to replace the one who quit. A third new teacher within five months. She started at the beginning of December.<br />
<br />
Others asked me why I wouldn't just <i>homeschool Lilli and teach her myself. </i>The long answer would be another post. The short answer is this:<br />
<br />
I can't.<br />
<br />
I need others to help me with her. We do so much to help Lilli for twenty one hours of the day, it's not too much to expect help for three school hours from an experienced teacher.<br />
<br />
Maybe Lilli was not regressing. Maybe she just hit the pause button when everything changed. Everything was so new and different and frustrating for her, to have new people who did not know or understand her. Not only did they not understand her, they were very frustrated with her. It makes sense. Sometimes I would hear one of the teachers saying over Lilli's loud crying, "WHY are you acting like this?! WHAT is wrong?" But the sad fact is, Lilli could not answer the teacher even if she wanted to. This is the point of having the teacher here - to teach her to use her communication device. But Lilli was not able to answer a question like "Why are you acting like this?"<br />
<br />
It must be awful to not be able to speak. All Lilli could do was cry.<br />
<br />
It was just a very hard season for Lilli. But we have new hope heading into this move.<br />
<br />
Soon we will meet with the new school district. Soon we will make new decisions about Lilli's education, and already I see big changes coming. Good changes.<br />
<br />
In this year of 2015 we will begin many new things. New home, new schools for three of our children, new community, new church...all with a new baby. I laughed one night and said to my husband, "Well let's see, are we doing this right? In 2013, you graduated from school, got a new job, we bought a new house, we fixed it up, and moved. In 2014, you got a new job, we had a baby, we bought a new house, and we will be fixing that one up and moving again. What will 2015 bring?"<br />
<br />
If you were raised in the church, you might be familiar with the passage of Proverbs 31. It is about being a wife and mom. The woman in that passage used to seem to me to be unrealistic and completely, impossibly perfect. But no one is perfect. Through reading and teaching the Bible to my children, I have only in recent years been able to start really imagining these people in real life situations as I describe them to my kids. It used to feel distant to me, in black and white Sunday school drawings in my mind. But now I can see real people.<br />
<br />
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="text Prov-31-10" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="footnote" data-fn="#fen-NIV-17295a" data-link="[<a href="#fen-NIV-17295a" title="See footnote a">a</a>]" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;">[<a href="https://www.biblegateway.com/passage/?search=Proverbs+31%3A10-31&version=NIV#fen-NIV-17295a" style="-webkit-font-smoothing: antialiased; background: transparent; box-sizing: border-box; color: #b34b2c; cursor: pointer; text-decoration: none; vertical-align: top;" title="See footnote a">a</a>]</span>A wife of noble character<span class="crossreference" data-cr="#cen-NIV-17295A" data-link="(<a href="#cen-NIV-17295A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> who can find?<span class="crossreference" data-cr="#cen-NIV-17295B" data-link="(<a href="#cen-NIV-17295B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-31-10" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">She is worth far more than rubies.</span></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="text Prov-31-11" id="en-NIV-17296" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">11 </span>Her husband<span class="crossreference" data-cr="#cen-NIV-17296C" data-link="(<a href="#cen-NIV-17296C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> has full confidence in her</span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-31-11" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">and lacks nothing of value.<span class="crossreference" data-cr="#cen-NIV-17296D" data-link="(<a href="#cen-NIV-17296D" title="See cross-reference D">D</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="text Prov-31-12" id="en-NIV-17297" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">12 </span>She brings him good, not harm,</span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-31-12" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">all the days of her life.</span></span></div>
<br />
Now I have come to realize that Proverbs 31 is <i>not </i>about being the "perfect" wife and mother. I am certain that woman had her failings and times of discouragement, they just are not pointed out to us. She surely had her moments when she was exhausted and covered with baby spit up, and dinner was burning while she yelled at her children to clean up their messes and help her. That part where is says she gets up while it is still dark? I used to imagine a serene, lovely, perfect woman waking up and gliding out to the kitchen humming like Snow White. But now I really think she woke up exhausted to a crying baby at 5 am and dragged herself out to make coffee like any typical mom, praying for strength for the day and mentally running through her upcoming schedule. She is a woman I aspire to be like, in attitude and skill. She is not perfect. She is just a hard working wife and mom with a good attitude about life.<br />
<br />
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="text Prov-31-16" id="en-NIV-17301" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">She considers a field and buys it;</span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-31-16" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">out of her earnings she plants a vineyard.</span></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<br /></div>
This part? I think of it as, "She considers an inexpensive item at the local thrift shop, and buys it. She sells it on ebay and uses the profit to pay for her kid to go to preschool."<br />
<br />
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="text Prov-31-21" id="en-NIV-17306" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">When it snows, she has no fear for her household;</span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-31-21" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">for all of them are clothed in scarlet.</span></span></div>
<br />
My version is "When it snows, she is not worried, because she bought snow pants on clearance last May."<br />
<br />
When you read it, imagine a real live mom. It's not so crazy if you try to put it in a modern day situation. It's simply about a woman taking care of her family. And that's any mom, whether she is working or at home. This woman is both, because she works from home.<br />
<div class="poetry" style="background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px; margin-bottom: 1em; margin-left: 1em; margin-top: 1em; padding-left: 2.6em; position: relative;">
<div class="line" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;">
<span class="text Prov-31-20" id="en-NIV-17305" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">20</span></span></div>
</div>
I hadn't looked at it in a long time, so opened my Bible up to Proverbs 31 to check it out. I wanted to re-read the one line I really remembered: "she can laugh at the days to come." And I smiled to myself, because when I flipped to that passage, the only line I had underlined on that whole page...was that line.<br />
<br />
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="text Prov-31-25" id="en-NIV-17310" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">She is clothed with strength and dignity;</span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-31-25" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">she can laugh at the days to come.</span></span></div>
<i></i><br />
<i></i><i>She can laugh at the days to come</i>.<br />
<br />
What does that even mean? I want to laugh at the days to come. Not in a cynical way, but in a hopeful, trusting way. I want to look forward to the future, to be excited about the unknown, to have hopes and dreams. I want to keep on laughing, because I am laughing right now. This is crazy - to be moving again and starting all over. I will have to go through this new-teacher thing with Lilli <i>all </i>over again. But I have learned a <i>lot</i> from 2014. And I am excited about 2015.<br />
<br />
There are good things to come. I really believe that.<br />
<br />
Though there will be many days, I'm sure, where there will be tears of frustration and exhaustion. I really hope that the laughing outweighs the crying. Or maybe that when there is crying, that we can laugh at the same time.<br />
<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="http://1.bp.blogspot.com/-CZb79VaF7kc/VMow3TZW_GI/AAAAAAAAAyc/i4FG5BYvzpI/s1600/IMG_2879.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-CZb79VaF7kc/VMow3TZW_GI/AAAAAAAAAyc/i4FG5BYvzpI/s1600/IMG_2879.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">A happy moment, taken on December 2nd. This was taken in the afternoon, <i>before</i> school at 3:00. </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="http://1.bp.blogspot.com/-jbvmQiSNCXY/VMoxrYCvu0I/AAAAAAAAAyk/j-zacDfL2zk/s1600/IMG_2964.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-jbvmQiSNCXY/VMoxrYCvu0I/AAAAAAAAAyk/j-zacDfL2zk/s1600/IMG_2964.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8000001907349px;">Selfie with a gingerbread house that Lilli helped decorate. This was pretty much my "look" for the past six months. I post it with no shame. I am a make-up-less, pony-tail wearing, tired mom with a newborn. </td></tr>
</tbody></table>
<br />
<br />
It is easy to have hope and faith during the good times, when things are going well. It is really tough to have faith and hope when everything is going wrong and you're feeling discouraged. Faith that is not tested is really not worth much. I think that this fall, my <i>hope </i>was tested.<br />
<br />
I just read through my previous post about having crazy hope. Sitting here at 5 am in my quiet kitchen, I am teary with a thankful heart that God is good, and He is faithful and gracious. He does not promise that life will be easy. When we face our toughest days and we are at our absolute worst, there has to be something we can grab onto and hang on. I hang on to the knowledge that God is good, no matter what.<br />
<br />
I need to remember that He loves Lilli more than anyone does, and He has great plans for her. Many days I have a hard time seeing that. Many days I am filled with discouragement, and I don't know what to expect.<br />
<br />
But I can say that God always surprises us. He really does. My husband has a new, amazing job. All fall, we searched for a place to live near his work, and for awhile the circumstances were looking like we were going to have a lot of trouble finding a new home and moving there. Jasen continued to commute, handle everything that comes with a new business, and look for a decent place for us to rent and raise our family.<br />
<br />
Remember what I wrote about in my <a href="http://wherelilliblooms.blogspot.com/2014/08/reality-versus-hope-and-faith-why-i.html" target="_blank"><span style="color: purple;">post about hope</span></a>? About how God gives us immeasureably more than all we can ask for or imagine?<br />
<br />
In December, I stood in my new back yard of our newly-purchased home and looked around with tears in my eyes. I looked at my husband and said, "Now this is immeasureably more than all we can ask for or imagine."<br />
<br />
It wasn't an amazingly perfect house or yard.<br />
<br />
It was the fact that it was perfect <i>for us</i>.<br />
<br />
It was so perfect, I'd never even stepped foot in it until after we bought it. When my husband saw it, he just knew. He called me and sent pictures. I said, "I know this might be insane since I've never even seen it, but I think you should make an offer."<br />
<br />
He responded: "I already did."<br />
<br />
Happy belated New Year to all of my readers. My hope for you is that this year, you can laugh at the days to come, with joy and gratitude for this life we have been given. As always, thank you for caring about our family, our journey, and for reading and commenting on here, or on facebook. Your encouragement is invaluable to me.<br />
<br /></div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com1tag:blogger.com,1999:blog-6544187541488651945.post-8509692814939884072014-08-16T05:53:00.001-04:002014-08-16T06:44:21.712-04:00Reality Versus Hope and Faith: Why I Choose Crazy Hope<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoNormal">
<span style="font-size: 14pt; line-height: 115%;">I’ve been
thinking about the concept of “reality” lately.</span></div>
<div class="MsoNormal">
<span style="font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I realize
that some may have thought over the years that I am slightly out of touch with
reality. All you have to do is look at us from a short distance, and my hopes and dreams for the future will seem ridiculously out of reach.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">For example, in the past when I have expressed the hope that Lilli will speak
again one day, I know that there are some who feel sorry for me, because they
think that, <i>realistically</i>, it will
never happen. This is based on well known, research-based statistics that say
that if a child does not talk by the age of six, they will never talk. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Well I don’t
care one bit about that stupid statistic.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">If you just read that last sentence and shook
your head, thinking, <i>She’s nuts. She can say that she doesn’t care about
statistics and reality but that doesn’t mean they are not true,</i> well, this
blog post might irritate you all the way through. Because I am going to try my
best to explain our view of reality... and crazy hope. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I am pretty
sure hope and faith would not make sense to someone who is focused on reality
all the time. It is a completely different perspective on life. Am I saying that I live with my head in the sand, completely out of touch with reality? No. I am choosing to focus on hopes and dreams instead of setting my sights on what is right in front of me, and on what others think is <i>realistic</i>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I have hopes for Lilli that do not make sense
to others. </span><span style="font-size: 14pt; line-height: 115%;">I hope that
Lilli will do certain things independently one day. </span><span style="font-size: 14pt; line-height: 115%;"> </span><span style="font-size: 14pt; line-height: 115%;">I hope many things for Lilli.</span></div>
<div class="MsoNormal">
<span style="font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Here is a
list of some of my hopes and dreams for her: (many may seem lofty...or "unrealistic")<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
</div>
<ul style="text-align: left;">
<li><span style="font-size: 14pt; line-height: 115%;">That she
will talk. Any words at all. She used to have a list of words. I dream that they will come back. <i>Very</i> often she will "say" something and it sounds so much like a real sentence - real words you can pick out...but just garbled up. </span></li>
<li><span style="font-size: 14pt; line-height: 115%;">That she
will be completely independent when using the potty.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">That she
will type completely independently, and read independently with some sort of e-reader. I mean hold it and read it herself.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">That she
will feed herself with utensils – an entire meal.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">I hope she will help around the house one day
and complete simple chores like picking up clutter and wiping the table.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">I hope she
will dress herself, even if it’s in an elastic waistband pair of shorts and a pullover shirt with no buttons.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">I hope she
will put on her own shoes – even if they are Velcro or slip ons.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">I hope she
will participate in a class at a school and work on grade level to <i>independently</i> complete
challenging academic work, even if it is adapted through a computer or on an
ipad. (Right now she is doing this with help.)</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">I hope that
one day, she will have real friends that she can communicate with independently and spend
time with. I hope she will learn new activities and be able to participate in
them independently with satisfaction.</span></li>
</ul>
<br />
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I used the word "independently" a lot. Which is not very realistic, because she really isn't independent with much at all...right now.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">These are
things I hope for, whether others think they are unrealistic or not. How can I
<i>not </i>hope for these things to happen one day?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I don’t
really care if other people think I am focused on goals that we may never
attain. All of the goals we have ever had for Lilli have been "unrealistic" in someone's eyes. Way back to when she was in the NICU and had a feeding tube in her nose and I still had lofty dreams of breastfeeding her. She had so much trouble even taking a bottle. I remember sobbing and sitting on the couch trying to nurse her for two weeks after she came home, so extremely frustrated. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">It took a long time, but she finally got it. I was crazily determined. And then I nursed her for two years. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Then there was the speech therapist who said, "I don't think Lilli understands that a picture represents an object," when I asked if we could try the picture communication system, so Lilli could have some way to tell us what she wanted. We tried an experiment with pictures on a board. Lilli would not pull the pictures off. She just sat there and cried. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">We could have given up then. But we didn't. We found other therapists who shared our hopes and kept trying... and eventually, Lilli "got" it. She used the picture exchange system for years until we got the ipad.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">I see everything else Lilli has ever learned in her whole life as being just that way. Taking forever, seemingly impossible, with some other people sympathetically saying, "It's ok, she's different, she just can't do this, and it's OK."</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">No. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">That's not how it is with Lilli. Lilli is like climbing a mountain where you cannot see the top. I don't know how big the mountain is. I don't even know if we will ever get to the top. But we still have to climb. Otherwise we'd just sit on the side and cry.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Would you think it would be better for me to just say, “Well, that’s
it. We tried for a few months, but she just <i>doesn't get it</i>. I have to be realistic, she has brain damage, so I guess we will just put her in
an institution and move on. Oh well.” </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">That's how I feel sometimes when people think "realistically."<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;">Reality<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I'll focus on reality with Lilli for a moment. All of those goals I listed above that I hope
for, well, they might sound crazy. Because she’s not even close to any of them.
Just not even close.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">If I were to
look at my life with stark reality right now, I would say these things:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Lilli cannot
talk. She has brain damage. She used to say words when she was one, and then they all disappeared. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">This is reality.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Lilli has
been potty training at the pace slower than glaciers melting, for the past
seven years. She has absolutely made progress. But she is nowhere, <i>nowhere</i> near
independent. This is reality.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Lilli does
not feed herself, dress herself, put on her own shoes, complete household
chores, or complete schoolwork independently. Reality is that we help her do
<i>every single small thing all day long</i>, and very often, that depresses me and
exhausts me. I have many moments <i>every </i>day when I sigh to myself and feel utterly defeated. <o:p></o:p></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Like climbing a mountain, indeed.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Reality is
that Lilli does not have any friends that she spends time with. Lilli has never
had a playdate. She does not have friends that call. She has never had a
“friend” birthday party. We would not know who to invite. She has never been invited over to a friend's house to "hang out." I really do not even know any other ten year old girls around here. Last week Chloe made my heart hurt when she looked at Lilli playing with Legos by herself and commented, "Lilli needs a friend."<o:p></o:p></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Yes. She does.</span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;">Reality <i>This Week</i><o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">ABA therapy
is over. It ended in July. All of the skills and goals Lilli has been working
on for three years...right now the depressing reality is that Lilli is just not
getting that therapy. It’s done. It’s done because the state says “You only get
three years.” No matter what. So that’s it. We went from 29 hours of ABA
therapy a week…to nothing. Even more depressing, our beloved therapist, Morgan, moved away to another state. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">School is
starting in <i>two days</i>, and Lilli does not have a homebound teacher. Yet. They are working on it. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Lilli’s beloved, wonderful homebound teacher of three years, Leslie, has just taken a full time position in the
school, and we do not yet know what will happen with Lilli’s homebound program.
<o:p></o:p></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">We just had
three amazing years of intense ABA therapy with Morgan, and with Leslie, our fabulous homebound teacher coming
every day, and now, all of that has changed. I do not know what comes next. I do not have a clue.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I am
stumped as to how this school year should look. Every day I have waited on news from the school district, waited for the phone to ring...to know if Lilli even has a new teacher. Thursday, I got news that things are in the works. We just need to be patient. Maybe God will send us a new, incredibly awesome homebound teacher this year.<o:p></o:p></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">I really hope so. It's Saturday, and school begins Monday. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">These
realities are difficult to type out. But they are truths. It is our reality. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">For right
now.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;">Hope Doesn’t Always Make Sense<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">The thing
about hope and faith is, well, they often do not make sense. In fact, most of
the time, it might seem just plain crazy to other people. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I always
look back to our past in order to learn and remember that <i>hope always comes
first.</i> </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Hope comes before things become real.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">If we all focused on reality - what we know for sure - all of the time, what kind of depressing
life would that be? We would never do anything challenging. We would never take
risks. We would never dream or hope for something that seems out of our reach
or completely impossible. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">People who
accomplish amazing things in life start out with crazy hopes and ideas, and often others think they are out of touch with reality.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">And where do we put our hopes? If we put hope in ourselves, we will fail. Because we are
human. No one is perfect. We all, <i>always</i>
make mistakes. No one is even close to being perfect. </span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">If we put
hope in other people, they will disappoint us. How many married people can say
that they put their hope in their spouse, and they were deeply hurt or
disappointed? How many can say that they put their trust and hope in their
parents, teachers, friends, pastors, or some other trusted person in life, only to be
shocked by hurt or deep disappointment? </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">But I am talking about putting hope in God. <o:p></o:p></span><span style="font-size: 19px; line-height: 21.466665267944336px;">Hope comes from God. He made it. He gives it to us. We don’t find hope in ourselves.</span><span style="font-size: 19px; line-height: 21.466665267944336px;"> We don't find it in other people. Big, crazy, impossible hopes are easy for God. He can handle anything.</span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">I hope for big, seemingly impossible things, because small hopes are “realistic.” When you hope “realistically,”
you put parameters around your hopes. You see an end result in your mind that
you think you can accomplish on your own. They are not really hopes, they are more like "goals." You are only hoping for something
that you think you can control yourself. When people say, "I don't want to get my hopes up," I think that means they are afraid to hope, because they know they are unable to control the outcome themselves and they are trying to avoid disappointment.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Big hopes are for when faith is required. Big
hopes seem crazy to others. Big hopes are for miracles. Big hopes are when you
ask God for something, because there is no possible way on earth you could ever
do it on your own.<o:p></o:p></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;"><b>Immeasurably More</b></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">This is a
verse I have always loved:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><i>“Now to him
who is able to do immeasurably more than all we ask or imagine, according to
his power that is at work within us, to him be the glory in the church and in
Christ Jesus throughout all generations, for ever and ever! Amen.”</i></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"> Ephesians
3:20<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">It is
describing that God can do so much more than we ever hope. This is where <i>reality</i> is left in the dust. It’s not
just “more.” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">It’s “immeasurably
more.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">It’s not just
“what we ask for.” It’s “more than all we ask or imagine.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">When we only
focus on our reality, there is nothing to hope for. But when we look at our
hopes and our dreams, that’s where God steps in and surprises us, when they are
things we could not possibly accomplish on our own. I might not think this way
if I had not experienced it in the past. I think all of us have experienced it
at some point in life, but some may just not recognize it. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">What is
something <i>you</i> hoped for, and then things in your life turned out way better
than you ever even imagined or hoped? A better ending than you had ever even
dreamed? Surely there is something. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">This is how
I look at the story of Lilli: it is not over yet. It has barely just begun, and
I really have no idea what life will be like for us in ten or twenty years. We
are only in the beginning chapters. I have a choice. I could sit down and cry about how I think
she will never be toilet trained and how I might as well give up on trying to
get her to type because she’s just not getting it and it’s not <i>realistic</i> to try and teach a child with
autism and cerebral palsy to type. I
could give up on a lot of things, because they are not “realistic.” I could sob for weeks and just resign myself to the fact that she will just need to go into an institution for full time care and "<i>this is my life.</i>" <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Or... I could
focus on my hopes and dreams for her, and wait to see what God has for us that
is “more than all I can ask or imagine.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;">Crazy Hope Makes a Person Look…Crazy<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Here is just
one story of how I learned about crazy hope.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Six years
ago, this was our "reality":<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">We lived in Virginia. Jasen was a
middle school teacher with a steady income and insurance coverage for our
family. We owned a home. We had two children, and I was a stay at home mom. We
were extremely frugal and were careful to make ends meet on his new teacher
salary so I could stay home, because Lilli needed me home and I had baby Chloe.
We had friends, belonged to a church, and had a routine. Life kind of made
sense, in many ways. Jasen worked hard to pay the bills and care for the big
things around the house and yard. I worked hard to care for our young girls and
take care of all the things a stay at home mom takes care of. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Yet, things
changed drastically. God sparked a dream in Jasen’s heart. We began to pray
earnestly about making big changes. God was leading us in a direction that was
completely unknown. It seemed crazy! How
could this be? Why would we “fix something that wasn’t broken?” Many
circumstances brought us to this new perspective in life, and we were certain
that God was leading us in a completely new direction.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">These became
our hopes back then:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
</div>
<ul style="text-align: left;">
<li><span style="font-size: 14pt; line-height: 115%;">For Jasen to
take organic chemistry, apply to chiropractic school, and get accepted. </span></li>
<li><span style="font-size: 14pt; line-height: 115%;">For us to apply
for and get gobs of school loans.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">For us to sell our home (in a dead market, on a street
with five other homes for sale).</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">For Jasen to quit his job, trusting that this was the right thing to do.</span></li>
<li><span style="font-size: 14pt; line-height: 115%;">For us to move to another state, where Lilli would
attend a new school, have new therapists, and Jasen would attend chiropractic
school for almost four years. </span></li>
<li><span style="font-size: 14pt; line-height: 115%;">For Jasen to graduate and open a practice somewhere. </span></li>
<li><span style="font-size: 14pt; line-height: 115%;">For us to own our own home again. Maybe have more children.</span></li>
</ul>
<br />
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">It was
ridiculous. It was not “realistic.” And it certainly did <i>not </i>make <i>any</i> sense.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Who in their
right mind would do such a thing? So drastic! Such a crazy risk! What? Take out
loans? Begin a new career at the age of 42? Jasen already had a perfectly good
career. We had a home and a life. Why in the world would we ever leave that, to
venture into the unknown? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Because of
<i>hope</i>. That’s why. We hoped for bigger things. Crazy things.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">And because
of God. Because He can do immeasurably more.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">Our reality
now… was only crazy hopes and dreams six years ago. Back then, whoever we told
our plans to thought we were absolutely nuts. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;">Our Crazy Hopes Became Reality<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">We sold our home in record time (before all the other houses on the
street, for a good price). That was amazing. We did not do anything more special than anyone else trying to sell a home. We moved here, and Jasen completed his doctorate and
graduated at the top of his class. He now (as of three weeks ago!) owns his own
practice. We own a home, unbelievably. Buying this home was a small miracle, for so many reasons I cannot explain here. We
were blessed to have a third baby in the midst of all of that (Josh). And now we are blessed to be having a fourth
baby in less than two months. We were blessed beyond belief to have ABA therapy for three
years with Morgan, and homebound for three years with Leslie. These young women
helped change our lives. We were blessed to finally find a loving speech therapist who truly believes in Lilli's intelligence and potential, and has worked hard to help us make immense progress with communication devices. We were so blessed to find all of these wonderful people here, that God put in our lives for so many reasons.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">I never saw that coming. I had no idea how amazing
some things would be when we moved here. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;">Was it easy?
Heck no. Was it crazy? Yep. Was it impossible? Not to God. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;">And don't think for a minute that we ourselves <i>made</i> any of that happen. You could argue that Jasen worked hard and studied all the time. You could argue that we worked hard to make our home nice so it would sell. You could argue a few things. But not really that much. We had nothing to do with the crazy buyers who purchased our home overlooking the TWELVE STEPS up to the front door. We did not have anything to do with the amazing teachers and therapists that were put into Lilli's life to help her. We were amazed to find our church, where Lilli has her own class with awesome volunteers and Jasen and I can actually drop her off and go to service together. And was it a miracle that Jasen was able to actually focus, study and be so successful in school with three young needy children (who didn't sleep much) around him all the time? You bet.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">We had so little to do with all of the incredible things that happened to us. </span></div>
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<span style="font-size: 14.0pt; line-height: 115%;">This is what
I have learned. When I look at my life with the perspective of “reality,” there
is little room for hope, or faith. I set my sights on a future that only I
think I can achieve. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt; line-height: 115%;">When I hand
my future over to God and put my hope and faith in Him, He is the one who makes
things happen. He alone is the one who can open or close doors. When we think
that <i>we</i> are making things happen on
our own, we make God very small and insignificant. Many people think that God
is distant, mysterious, or does not exist at all. They cannot fathom why a
person would ever put faith in an invisible god who seems to be a figment of
imagination to many. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;">I struggle
to explain to others why God is so real to me. That He reveals Himself to those
who truly seek Him. That He is evident, everywhere, all the time, but only if
you are truly looking to find Him. If you don’t look for Him, you won’t find
Him. If you don’t believe that He might possibly be real, you won’t experience
meeting Him. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<b><span style="font-size: 14.0pt; line-height: 115%;">Reality Now: Time to Have Crazy Hope Again<o:p></o:p></span></b></div>
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<b><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></b></div>
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<span style="font-size: 14.0pt; line-height: 115%;">The story of
how Jasen came to have his own practice is a chapter of its own. During the
past seven months, we found out we are going to have another baby, Jasen worked incredibly hard to acquire this new business, Lilli’s ABA therapy came to an end, Lilli’s
therapist Morgan moved away, and her homebound teacher is moving on to a new
job. I decided to homeschool Chloe for the first time ever, beginning this school year. The baby is coming in a month and a half. Meanwhile Jasen is commuting, and we are just waiting for awhile until after the baby comes to figure out all the moving details. Doors are closing and opening all around us, faster than we can keep up. Reality is that we are
in transition, and we are not sure what comes next for Lilli, school, where we
will live, when we will go, and how we will eventually transition to the new location an hour and a half away
in a new state (where Jasen has his new practice) by next year. </span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Reality is that I have mounds of paperwork ahead of me, getting
new specialists, doctors, therapists, and teachers for my children, along with
a very likely battle with insurance and new state waiting lists for various
services for Lilli.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14pt; line-height: 115%;">You may think we are crazy. You may be thinking,
What? New house? New job? New teacher? New baby? Homeschooling? (<i>What?!</i>) You're going to move again? New state? You just moved! You just bought that house! You just fixed it up! (and it's not even finished!) You’re
having a baby! How are you going to homeschool? What about packing? What’s going to happen with
Lilli if she doesn’t have an ABA therapist or a homebound teacher?</span><br />
<span style="font-size: 14pt; line-height: 115%;"><br /></span>
<span style="font-size: 14pt; line-height: 115%;">And actually, I know more than some are just thinking these things. Because many of these questions have already been asked to me in disbelief by others who know what has been going on.</span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;">Well, we do
not know about any of the answers. <i>Realistically</i>, I should just sit down and cry about all of it.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">But we did not just get here on our own. God has led us to this
point. We know this is what we are supposed to do for now. I do not know all
the answers. But we have hope.</span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14pt; line-height: 115%;">We trust God. He is the one who is leading us. That's why I can choose to have crazy hope.</span></div>
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<span style="font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 14.0pt; line-height: 115%;">And I have crazy big hopes that whatever happens in the next year, wherever we end up, it will be better than...more than anything I can even ask for or imagine.<o:p></o:p></span><br />
<span style="font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-size: 14.0pt; line-height: 115%;">Immeasurably more.</span></div>
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Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com1tag:blogger.com,1999:blog-6544187541488651945.post-10315375525562528712014-06-27T11:24:00.001-04:002014-06-29T22:14:59.910-04:00Special Needs: What Relatives and Friends Should Ask <div dir="ltr" style="text-align: left;" trbidi="on">
We had someone over for dinner. During the visit, all went well. We had a nice conversation. The kids behaved and ate their food. We kept the meal simple. The house was pretty clean. On the surface, it was smooth and uneventful. And nice to have him visit.<br />
<br />
But after he left, I cried.<br />
<br />
I cried, because sometimes even close friends and members of our own family do not always know the details of our struggles. How would they know unless we tell them?<br />
<br />
I sat on the bed and told my husband why I was sad, and he listened and completely understood. My husband is my best friend in life... he is the only other person who truly understands.<br />
<br />
I felt like we lived the night in two parallel worlds. The real world, and then the on-the-surface<i>, everything is fine and normal</i> world.<br />
<br />
With our visitor, we talked, we ate, and I mentioned a few details about Lilli that really surprised him. I tried to explain a few things, but felt that <i>really</i> explaining would be too much information, and that he might not want to hear all that stuff. I guess I wasn't sure. He didn't ask, so I didn't explain. There is also a part of us both that feel like some people should <i>already know.</i> That they would know if they would just ask.<br />
<br />
But that is just not true. I am realizing this. It is partly my fault for not helping them understand.<br />
<br />
When it comes to special needs, people do not know <i>what </i>questions to ask, so they don't ask. And that even includes close friends and family.<br />
<br />
A relative once told me after she had read several of my blog posts, that she had no idea that I had been struggling with certain things. This person and I are very close, so she was surprised. I didn't keep it from her on purpose. I just...don't always bring things up. She didn't ask. I don't know why I didn't tell her. She pointed out to me that I seldom complain about things. I didn't realize that about myself. I thought I complained a lot - everyone complains. I try not to complain too much.<br />
<br />
Writing it out is a different story. I really spill it here sometimes. There's no way I could ever tell someone all of these details about our lives in a conversation. Not unless you took me out for coffee somewhere without my kids and really asked me about things for several hours. And that happens so rarely that I guess it's partly why I write - to get it out. But many of our relatives and friends don't read this blog. They might know more if they did. That's ok, I'm not offended. It doesn't mean they don't care...I don't think. They just aren't into reading it. That's alright.<br />
<br />
Here's why I cried: Because he just didn't know about certain things we struggle with as parents of a child with special needs. And sometimes that mere fact makes us feel very alone. It's always better when you feel like people understand you. He cares a lot. We know he does. But no one can really know.<br />
<br />
I mentioned that our ABA therapy was coming to an end, and that Morgan, Lilli's therapist who has become like family to us for three years - like a sister and best friend to Lilli and like a daughter and friend to us, is moving away. He asked if we couldn't just find another therapy to do with Lilli, or another therapist. I tried to explain it, but I couldn't. I could not explain to him that I feel like a part of our world is falling apart, being torn away, and that I cried for an hour after Morgan left today, because what will life be like without her? Instead I rambled about the waiver program ending, and that we will not even get ABA therapy at all anymore, and that there is nothing - <i>nothing</i> next. I realized I could not possibly explain in just a few minutes what all that means for our family...so I just didn't explain.<br />
<br />
Instead I mentioned some of the many things Morgan had worked for years to teach Lilli - like how to put a plate in the sink, how to sit on a swing, how to pull down her pants when she goes to the potty, how to communicate simple ideas on a speech device, how to wash her hands....<br />
<br />
Many people do not know that we must help Lilli with even the smallest of tasks.<br />
<br />
I explained that she has trouble turning faucets on, that she cannot get the soap out of the hand pump by herself...that we have to prompt her to rub her hands together, turn off the water, and that Morgan has been trying to teach her <i>how </i>to get the towel and rub her hands on it every day, multiple times a day for several months now. It's not like Lilli doesn't feel like doing it. She...doesn't know how to make her hands and body do it. I felt like explaining all of that was... a teeny attempt to get him to glimpse how much help Lilli needs all the time. It felt like a drop in a bucket.<br />
<br />
No. A reservoir.<br />
<br />
Later, I mentioned something about Lilli recently having a bad seizure. He didn't know, but it was not like we called people to tell them. He was immediately concerned and asked if she was ok. I said yes, but I didn't really go into detail. He didn't ask about details, so I didn't tell him. I didn't explain about how she had been taking a nap, and Morgan yelled to us in a panic and Jasen and I tripped over ourselves racing back to get to her, how Jasen yanked her clothes off and gave her a rectal dose of Diazepam and Morgan and I ran to get the oxygen tank out of the next room because it was a bad one, we could tell. But this is "normal" to us. How would people even have any frame of reference unless we told them what it was like? Most people do not know that every time Lilli has a seizure, it puts both of us in a depressed mood because it is the most helpless feeling we have in life, and it has been happening for ten years. We don't bring it up to others, because it is just a part of our lives. But it is traumatic every single time. It sets us thinking about a list of depressing thoughts, and we have to comfort each other and pray, because there is nothing else we can do.<br />
<br />
But I guess other people don't know unless they ask.<br />
<br />
During dinner, no one spoke about how we feed Lilli because it is so hard for her to feed herself. This is our normal, and he knows this. But most people do not know the incredibly long story behind all of her feeding issues, and how we have struggled so much for her whole life. We don't talk about it unless someone asks.<br />
<br />
When Lilli walked by later, I knew she had had an accident, and I swiftly took her to the bathroom to change her and give her a bath. I didn't say anything. Most people might not know that she is still potty training. We don't really talk about that.<br />
<br />
Anyone visiting would probably not know that in the bathroom, I do every single task for Lilli. That when I gave her a bath that night, I took off her clothes, helped her get into the tub, that I scrubbed her and washed her hair and rinsed her off and helped her climb out, that I dried her off and dressed her in her pjs (putting her arms in her sleeves, helping her step one leg at a time into her shorts while she held onto me so she would not fall) and brushed her hair.I do all of these things for her even though she is ten, because she cannot do any of it on her own, but my seven year old can do all of those things by herself.<br />
<br />
Most people would not know that when we go to bed, that Lilli sleeps in our room, and that we take turns listening for her all night long, making sure she is not having a seizure, and that sometimes she wakes up in the middle of the night and we have to help her go to the bathroom or lay with her to help her go back to sleep. People do not know that we feel stuck in this less-than-ideal sleeping situation, because how do we get out of it? How do we sleep at night knowing that Lilli could have a life threatening seizure and if we are not there, we would not hear it or know? Even our closest family and friends do not know how this affects our lives, our sleep, our family, and our marriage.<br />
<br />
Friends and family would not even know to ask about any of that.<br />
<br />
Over dinner, we talked about traveling, and places we might like to go one day. I said I would love to go to Hawaii one day. But I didn't say outloud how it depresses us that we cannot ever leave Lilli and that we don't think we will ever get the chance to go to Hawaii or any place like that. He didn't ask, but I feebly attempted to ramble about it anyway, that we cannot leave Lilli to go away, that we have never left her over night, and that we can't just leave Lilli with any regular babysitter. I tried to explain it to him, but then I realized he couldn't truly understand. No one can. It sometimes feels like it's too much to explain how and why.<br />
<br />
This is my fault, when people don't know. I cannot fault others for not knowing what to ask. And I think that other parents of children who have special needs might feel this way sometimes - like even their own relatives don't understand what they are going through, raising a special needs child.<br />
<br />
Parents, they will not know or understand unless they come over, see it, and you tell them.<br />
<br />
So here is my attempt to get this idea out there to friends and relatives: Visit. See what life is like. Spend time with the family. Ask lots of questions.<br />
<br />
Here are a few ideas:<br />
<br />
<ul style="text-align: left;">
<li>Tell me about some of the things you are working to teach your child. What do you struggle with? What is your child's biggest recent accomplishment? (Even if it's tiny)</li>
</ul>
<ul style="text-align: left;">
<li>What kinds of therapy does your child have? How often? Do you drive there or does the therapist come to your house, and how is it going? What goals do they work on in therapy? How do you think it's going?</li>
</ul>
<ul style="text-align: left;">
<li>How are things different when it comes to raising your special needs child compared to your other children?</li>
</ul>
<ul style="text-align: left;">
<li>What do you wish other people knew about your lives?</li>
</ul>
<ul style="text-align: left;">
<li>Tell me about a typical day with your child. What are the little things that most people take for granted in life that you struggle with each day?</li>
</ul>
<br />
Going a little deeper:<br />
<br />
<ul style="text-align: left;">
<li>How do you feel about the future? What are you hopeful about? What worries you? What scares you? How can I help?</li>
</ul>
<ul style="text-align: left;">
<li>Are you getting enough rest? Do you need someone to give you a break? And if you do, would you ask for it or are you waiting for someone to offer?</li>
</ul>
<ul style="text-align: left;">
<li>Do you feel supported by our family? Are there specific things we can do, that we don't know about?Is there something you are struggling with, that you wish our family could help you with?</li>
</ul>
<ul style="text-align: left;">
<li>What do you need the most right now from our family? Do you feel like we understand what you are going through?</li>
</ul>
I really hope this helps someone. If you have a child with special needs, remember that you need to explain and help others understand your lives, and be specific about what you feel and need. If you know someone who has a child with special needs, (or you are related to someone) please know that it is safe to assume they are definitely struggling in some way. Raising any child is challenging. Raising a child with special needs is a completely different ballgame. Know that they probably would not tell you what they are struggling with unless you come right out and ask them.<br />
<br />
For me personally, most of the time I just need encouragement. I realize that no one else can step in and fill our shoes and care for our daughter like we do. And that's OK. I'm not asking anyone else to give Lilli a bath, or come over and watch her at night for seizures so we can sleep like a normal couple. But having a child with special needs is a lifelong commitment in physically caring for another person, and it is extremely overwhelming at times.<br />
<br />
It helps us to keep going when we know when we are surrounded, encouraged, and supported by loved ones.</div>
Jenniehttp://www.blogger.com/profile/05592107148520813421noreply@blogger.com0