Why I Sing

Dear Friends, I wrote this two summers ago. I think about it all the time: the reason "Why I Sing." 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.

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.

June 2017

Monday.


I am.

I am standing at the sink, washing dishes. Thinking about Lilli. Singing a song to myself. “I Am” by David Crowder.

I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on
I am.



We sang it in church yesterday morning. My mouth sang the words, but my soul cried them out.

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.

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.

You realize in the middle of the storm.

In the darkest storm, in the hurricane, you realize what you can hold onto.

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.

Lilli having a seizure. All the lights off...


Sunday Night

…. 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.

I sense my husband sitting up quickly and checking on Lilli for a second. Waiting. Listening.

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.

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.

Words get in the way in situations like this. They take too much time.

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.

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.

But it does not always work.

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.

All of these experiences have accumulated a large amount of stress and trauma over the years.

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.

This is not good. Not good at all.

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.

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.

“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.

This is too long.

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.

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.

I hope Chloe and Josh don’t hear and wake up and come in here too. I don’t want them to see this.

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.”

“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.

As I dial 911 I have a slow motion feeling creep in that I have had in times before like this.

What if this is it?

What if this is THE seizure that takes Lilli from us?

This could be the one.

Don’t let it be the one.

Don’t let it be the one.

I rarely let myself think this awful secret thought.

Any seizure could be “the one.” I know more than one set of parents who have lost their children to a seizure.

I don’t want it. I don’t want this. I push the thought away because it is like the earth beneath us crumbling away into a sinkhole.

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.

“911 what’s your emergency?”

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.

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.

I will not tell them.

We will wait for the ambulance. For the helpers, who will come in and check Lilli.

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.

The EMTs come in while my dog barks ferociously. They are serious, pleasant, and purposefully calm.

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.

They stay for a while. Lilli is OK. She scared us to death, but she will be OK.

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.

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.

I can't sleep.

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.

So I will call upon Your name
And keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mine

(“Oceans” - Hillsong United)

The Day After - Monday Morning

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.

I spend the entire day tending to her and cleaning up after her, every 20 minutes.

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.

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.

I need an anchor in this storm.

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 so, so very hard sometimes. But in the waves, I do not look down. I look up.

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.

I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on
I am.

Tuesday Morning

I am drinking coffee with my husband.

It has been tough. We are worn out. but hopeful that she will be better today.

I look at my husband and ask him. “When Lilli was having that seizure the other night, I was thinking, this could be the one. Do you ever think that?”

“All the time.” He said immediately.

“Every time.”

We sit in silence, thinking about that.

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.

I am holding on.

I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on, I am.

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.

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.

Your love is devoted like a ring of solid gold
Like a vow that is tested like a covenant of old
Your love is enduring through the winter rain
And beyond the horizon with mercy for today
Faithful You have been and faithful you will be

You pledge yourself to me and it's why I sing
Your praise will ever be on my lips, ever be on my lips
(Ever Be - by Kalley Heiligenthal)


Indeed, God is faithful. We are not promised a perfect, happy life. Every single one of us on earth has trials, hardships, and heartbreak.

But God is faithful.

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.

And it's why I sing.

Celebrating Mothering Day

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.

But it’s Mother’s Day.

So I have been up thinking for hours about today, and what it means to celebrate today. And who “gets” to celebrate it. 

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.

For you, who are sad today, these words are for you.

Mother’s Day is not about mothers.

Mother's Day is about mothering.

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.

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.

I am thankful for all of them.

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. 

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 mothers. It is about women who foster, adopt, or help anyone by “mothering” them in some way. 

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.

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.

Celebrate all those who mother, on mother’s day. It really should be called "Mothering Day."

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.

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. 

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.

Attempting RV Camping - Part 4: Realizations, Meeting Another Lilli, and Coming Home

More Gifts Than We Realize

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.

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. 

"I see you have the best campsite for wifi in the whole campground!" He tells me.

"What? Really? It's not that great, but it's ok," I say with confusion.

"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."

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.

Isn't that just life? We never truly know how good we have it until someone else tells us.

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."

Our camper. Next to the bathroom with the wifi, that white thing up on the roof. Can't get much closer.

And He really did. He saved that spot just for us, because the way we even got that campsite was just silly.

We did the whole trip planning backwards.  The dumb, I don't know what I'm doing 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.

Hmm, that's weird, ok, I'll just check back in a few weeks, 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.

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.

"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."

Really? A year? I think I messed up here somewhere, I thought to myself.

After she left, I went back to the website. 

Oh. 

I didn't see the year part. 2018. They don't take reservations past April 2018 of next year. 

Quickly I scanned the dates we were planning to camp (in 2017) and I was immediately dismayed. Completely booked. I'm such a dummy. Duh, who rents an rv and tries to get a good spot at the beach in a few weeks. I did not know about this year in advance thing. Oh wait!  Except for one site. One single site was unreserved.

The handicap site. Can't reserve it online.

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.

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.

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.

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.

That one single campsite next to the wifi was saved right there for us for those two days.

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 tell me 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.

I wish I could find that stranger and tell him thank you for helping me to see that gift.

At the campsite picnic table, I open up my Bible and read to Chloe. 

Your love, O Lord, reaches to the heavens, 

your faithfulness to the skies.

Your righteousness is like the mighty mountains,

your justice like the great deep.

....For with you is the fountain of life; 

in your light we see light.

We talk for a bit about what that might mean. In your light we see light.

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.

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.

A Girl Like Lilli

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!"

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 cerebral palsy, autism, and seizures."

I drop what is in my hands and run out of the rv. 

"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.

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."

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.

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.

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.

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.

But the next part is almost unbelievable. 

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.

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.

"Who is her neurologist?" I ask the mom. Even though I already know the answer. She goes to the same one Lilli sees.

I have never, ever met another girl who has the same diagnosis as Lilli. 

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? 

Except I don't believe in "chance."

The Ride Home

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.

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.

The weather forecasts were all dead wrong.

Sunrise over the RV. I am so glad we went.

I am so grateful for the gift of this trip.

We did it.

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.

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.

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. 

"What's this?" I ask her.

"Oh, that came for you. I've been meaning to give that to you," my mother in law says.

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.

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. 

Thanks God, I'm pretty sure you did a whole bunch of other things for us that we didn't even notice.

After the Trip

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. 

She is so happy for us, that we had a great time. But mostly, she is happy that we even went at all.

"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."

I get that. It's hard.

"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."

After she leaves, I think about her words for a long time. 

It is 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 so glad we went. 

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.

When you take risks and step out in faith, there are always, always gifts along the way. When you step out of your comfort zone and talk to total strangers, cool things happen.

Envisioning Versus Actuality

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.

 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 did 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?

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.

Short lived. But it was a good idea, oh well. 

But the RV didn't crash. We didn't permanently lose any of our kids. And we all made it back.

What I didn't envision were these gifts:

-Relaxing at the beach. Lilli napping next to me, while I sat in a chair and read a book. (!!)

-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.

-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.

-A fun family bike ride where we saw neat birds and alligators.

-Meeting cool people that we will keep in touch with.

-A random check of $92 to pay for the $91 and change cost of a tank of gas.

-Laughing hard, doubled over about our crazy first night. Authorized vehicles only.

And so many other memories we will treasure and laugh about for years.

What Do the Kids Remember?

I ask my husband, one week later: what was your top favorite moment of the trip that makes you think, it was all worth it.

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. 

"And the other was when we rode our bikes together on that trail," he says.

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.

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.

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!"

Every single thing, 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.

She said everything.

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."

 And this is exactly why we should do it all over again.

After mulling over her answer for awhile, I think I agree with Chloe. What was my favorite part of the trip? Everything. 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. That was what the whole trip was about.

Being all together on a camping trip.

Future RV Trip? 

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.

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.

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.

It'll be fun to tell all about your adventures when you get back, and your kids will remember the good stuff.

Just make sure to hide some cookies for yourself somewhere in case you need them.

Attempting RV Camping - Part 3: The Sun Always Rises

Day 2

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.)

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.

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.

Our plan worked.

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? We are at the beach! 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.

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.

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.

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.

My husband comes out from the back room and silently holds up his glasses so I can see them.

Broken.

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. 

"Have a cup of coffee hon. We're on vacation."

The First Bike Ride

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.

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. 

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.

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."

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.

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: Nate's fine and you're welcome for the performance.  A middle aged man approaches Jasen.

"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.

Good thing I had packed the big band aids in the first aid kit.

Beach and Movie Soundtracks

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.

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.

It's amazing. I actually get to sit in a chair at the beach and relax for a little bit.

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.

Our beach set up. No one near us. Lilli is snoozing under that towel in her stroller.

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.

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.

We come back after the bike ride and cook burgers over a campfire for dinner, and roast marshmallows and make s'mores.

It wasn't all how I had envisioned it.

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.

Josh found a cool spot to eat fun cereal out of a box.

This guy is my hero. Just don't look at his shoes.

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.

Lilli chilling at the picnic table after the beach with her DVD player in her lap and a bag of cheesepuffs.

Day 3

It's our last day. 

What? You just got there! 

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.

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. 

I crawl back in bed next to Nate and lay there for a minute, debating.

I'm going to go. Maybe I'll get lucky and get a glimpse of the sun through the clouds, I think. 

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. We might catch it, I tell her in a hushed voice. The entire campground seems to still be asleep. Hurry! 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.

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.

"I didn't think we would get to see a sunrise today because of the clouds," I say to him. "But there it is!"

"Yep, it always comes," he says. We smile.

"Every morning," I say back as Chloe and I take off running down to the water. 

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. 

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.

But the trip is not over yet. There are more surprises still to come.

To be continued in the conclusion: Attempting RV Camping - Part 4: Realizations, Meeting Another Lilli, and Coming Home