The New Neurologist in the Mountains

It takes 43 minutes to drive to the new neurologist's office. I drive in silence.

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.

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.

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 am 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.

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.

The iphone.

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.

It's a chance I decide to take.

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. Don't think about that today. That's later. Think about the neurologist. That's today.

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.

Lilli cannot stand in a line.

She anxiously tries to get away from me while making sounds of increasing distress. I silently pray that they hurry up, hurry hurry. 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.

Except for Lilli. She is the only person in the room that is howling at the top of her lungs.

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.

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.

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.

Potty. She might have to go potty, 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.

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.

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 told you. I was trying to tell you. She is quiet and happy while I wash her hands for her, get a paper towel and dry them off.

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.

I look right at her and say in a matter of fact way, "She has autism."

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.

"Oh, it's okay," she says.

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.

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.

Crying starts again as we get up and I put the DVD player back in the bag.

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.

"No. 60 pounds," I say, and I keep walking. Then I think, maybe it's 65.

"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.

I was wrong, I think to myself. She's 63 pounds.

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.

"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.

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.

I know what I need.  I need a Kit Kat.

I don't have a Kit Kat. So I take a drink of my bottled water.

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.

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.

He writes it all down as Elmo sings Elmo's Song in the background.

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.

I hate doing this in front of Lilli. She is listening.

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.

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.

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.

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.

Still she has seizures. And she is on a medication that is causing her problems.

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.

"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.

We will do tests and meet again and come up with a plan.

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.

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.

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.

This was one of our better doctor visits.

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 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.

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?

My eyes well up with tears. I drive home, teary the whole way.

Later when we are home, Lilli has a seizure. It is a small one. Short.

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.

She really said them, and I really heard them.

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.

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.

There were more words too.

She didn't have a ton of words, but she had them. And they all disappeared.

Because the words were there once, I keep waiting for them to come back again. I keep hoping that her speech disappeared temporarily.

Temporarily for ten years.

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.

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?"

And she can tell me.

The Fate of Ipad #2

When your kids do dumb things, does it ever remind you of something dumb you did when you were a kid? It's easier to show grace that way. It sure reminds me. I did a ton of dumb things. That is the perspective I am choosing to take on what happened here this weekend.

A little over a year ago, I read Carly Fleischman's story, "Carly's Voice." It is the story of a girl who has autism, and she learned how to type to communicate. Her story is amazing. She was the inspiration for why we are trying to teach Lilli to type independently. Even after two and a half years, we are still going at it with faith that we are on the right track. But I've posted about that before. In this post, I wanted to point out that when I read her story, several details really stuck with me.

One was that Carly broke a bunch of laptops while they were teaching her to type.

Another was that it took a very long time to teach her to type, but they never gave up hope, and they tried hard, for years.

Even after she broke a bunch of laptops.

I feel like the number was pretty high, like six or seven laptops, but I can't remember. If you ask me, even one or two is a lot. For some parents, if a child with special needs breaks even one device from slamming it or throwing it...well, I think many would say, "That's it. My child cannot have another one. It's too expensive. This is obviously not the way to go. Let's try something else." I think some parents will not even try to teach their child to use a device, because they fear their child will just break it. Yes, it's true. They might. In fact, they probably will.

But not Carly's parents. I picture them sighing, maybe yelling, or maybe just sulking in silence about it all, and then trudging out to buy yet another laptop. Because they had to. How could they not? (By the way, Carly is now in college, taking classes. So imagine if they'd given up after she'd broken the second or third laptop.)

Carly's story really has had a lot of influence on us. This girl has given hundreds of parents (maybe thousands - you should see this girl's facebook page) of children with autism something that cannot be bought:

Hope.

Because if it can happen for that girl, then maybe it can happen for my child too.

Hope that even though things are unbelievably difficult, there might be a reward one day. A reward of breaking through the silence. Of finally knowing exactly what my child is thinking and wanting to tell me, all the time. And even to think that there "might" be a chance that Lilli can learn to type all by herself, that maybe one day she "might" talk, there's a chance. No matter how small that chance may be, there is hope.

So you may be wondering why I remember specifically that Carly broke a bunch of her laptops.

It's because Lilli just broke her second ipad last night. Her second one.

Yep, plunged it into water and gave it a bath. Pulled it up and the screen was blinking. That destruction took probably all of about five seconds.

I am going to say this, even though I probably shouldn't. But I wasn't home at the time. I was gone for 25 minutes and my husband was there, running water in the tub for Lilli and getting ready to bathe her. But he was distracted... and momentarily drawn away from the bathroom by chaos in the kitchen with our other two children, a spill, and a borrowed dog.

Don't ask about the dog. So even though it was a big accident, well, I wasn't there. I was picking up my niece at the airport. I had nothing to do with it. That's all I'm saying.

So the ipad #2 is sitting on the heater vent this time. Last time, when ipad #1 was put under the faucet by Lilli (also discovered by my husband, I might add - I was home that time, but he was closer to her...I'm just saying) we did the bag of rice method for a week. And that ipad never recovered. It never came back on again. I had to drag all three of my kids to the genius bar at the local Apple Store, only to be told by the genuis (who took a special flashlight and shined it inside one of the little holes):

"This ipad has water damage."

I had just told him that my daughter put it in the sink and turned the faucet on. (She likes water.) So my experience at the "genius bar" kind of made me chuckle.

I felt like saying, "Well, DUH!" But you can't do that in an Apple store to someone who has the job title of "Genius."

I know, the rice in a bag trick has worked for many of you. Just not for us. Maybe we should have used white rice, not natural whole grain brown rice. I don't know.

We are trying the prop-it-on-its-end-on-the-heater-vent-and-pray tactic this time around.

This ipad is extremely valuable to us, in so many ways. Lilli took her first standardized test ever with this ipad. She can use it to make choices - whatever choices we program into the Proloquo speech communication program. She uses it with her ABA therapist in many of her programs. She has several favorite apps that have taught her a lot. The ipad is her number one source of self entertainment. One of her only ways to entertain herself, actually. (See my last post.) I actually cannot list all of the reasons why the ipad is so important to us, there are too many.

You now may be wondering: do we have insurance coverage on this ipad?

Hmmm. Great question. I do not know.

Last time this happened, I called the school, and the insurance plan had just run out, and they had not renewed it. They graciously forgave us and replaced it anyway.

This time...well, this time my plan is to have my husband make the phone call. I do not know how much grace this district has left to give us. We have been extremely blessed that they even gave us an ipad to use in the first place. Maybe they will get her another one. Maybe they will tell us: too bad. And we will say, "We understand. You trusted us with this device, and our daughter gave it a bath. We are so very sorry."

Either way, this will not stop us from trying to teach Lilli. She has a terrible fascination with water, and obviously no common sense about putting two of her favorite things together, the ipad and water. I wondered why she did it. I think it might be as simple as the curiousity of what it would be like to play with her ipad under water. Kind of like when I was a kid and I put the iron on the carpet, and then there was a burn mark shaped like my mother's iron in the middle of our green carpet for about ten years.

Why did I put the hot iron on the carpet? My feet were cold. Do you follow? Please don't make me explain that one in any more detail. I just told my husband the story and he laughed and said, "Well there you have it, that was equally as dumb as putting the ipad in the bathtub."

Kids do dumb things.

Maybe the ipad will dry out and survive. I'll let you know. But I forgive Lilli. It's better than an iron mark in the middle of my carpet.

My post about Carly: http://wherelilliblooms.blogspot.com/2012/04/unraveling-lillis-typing-mystery-with.html

Links about Carly: (you need to click on her facebook link, just to see it.)

http://www.facebook.com/carlysvoice 
http://www.amazon.com/Carlys-Voice-Breaking-Through-Autism/dp/1439194149 


 

Hope and Forgetting to Have It

If you know my six year old Chloe, you know she loves the Wizard of Oz. Her fascination with it all began by my taking her to an elementary school play. I took her to that play last spring. I’ve mentioned before in my blog that I often write posts and then do not post them. Sometimes I don’t like them. Sometimes I decide it is too personal and I keep it for myself. Sometimes I just don’t feel like it is ready. This is one of those posts. It is just how my heart works, I’m not sure why. I wrote this and tucked it away months ago. But this morning I woke up and decided out of the blue, today is the day for that post. It seems random. Maybe it is because there is someone out there who needs to read it this week. Only God knows. I just wanted to explain that it happened almost a year ago. But it was significant enough to remain on my heart and mind all this time. I hope it touches someone else today.

* * * * *

Hope.

I think about it all the time. Hope is what keeps us going. And I am always looking for ways to keep it. Because it can be forgotten, and it can be lost.

Since Lilli started to communicate to us through her ipad, I have felt more positive about having a child with special needs than I have ever felt. The thrill of communicating with Lilli has pushed the other significant difficulties into the background a bit. I am not clueless about what Lilli wants, thinks, and feels anymore, which was most of the frustration before. It is still in the beginning stages, but the thought of her communication getting better, well, that gives me hope for the future. I have to look for things to hope for, and remind myself that God can do anything.  It is part of the reason why I write things down. When I am feeling overwhelmed and depressed about Lilli’s needs, I can go back and read what I wrote on Lilli’s eighth birthday and remind myself that she was born for a purpose, and created to be this way for a reason. Even with knowing all of this, I am only human.  And sometimes, I forget to have hope. Even after getting all teary and pouring my heart out about how Lilli was created by God to be exactly who she is.

I forgot on one particular night, for just a few minutes.

I took Chloe to see a play. Chloe loves theater, singing, dressing up, and all kinds of drama. She creates much of the drama in our house each day, sometimes with costumes and sometimes without. So when I heard about the free performance of the Wizard of Oz put on by a local elementary school, I was excited to take her to see other kids perform a play. I know Chloe will be on stage someday. She uses her plastic microphone and costumes almost every day at home. Since my mother in law was visiting, I was able to take Chloe and not worry about childcare for the other two while my husband was at school. Chloe skipped across the parking lot next to me, delighted about seeing the play. I, once again feeling a mixture of guilt and thrill for being out with one child while the other two stayed home, made my mind up to truly enjoy this short date with my five year old future actress.

We said hello to a teacher’s aide that I knew as we entered the lobby. I held Chloe’s hand tightly as we wound our way through the crowd into the seating area. The auditorium was packed with rows of extended families with cameras ready, and toddlers trying to climb over the backs of seats. Chloe and I picked our way to two seats way in the back, crawling over a few people to get to them. I read the photocopied program while Chloe bounced on the flip-up seat. Finally the lights dimmed. When the curtains pulled back and an eight year old Dorothy began to say her lines and sing, I was blindsided with an unexpected flood of emotion. I got teary and a lump formed in my throat. I was a little shocked at my reaction, but I should have known better. Moments later when an adorable group of elementary-aged munchkins danced around and sang, I put my fingers up to quickly wipe tears from my eyes.

Chloe noticed. She peered at me in the darkness.  She whispered loudly as five year olds do, “Mommy, why did you just do THIS?” and she put both of her first fingers up to her eyes and copied me.

“It’s nothing, sweetie, watch the show,” I whispered back.

I prayed and tried to get a grip. I have these moments every once in awhile. You see, this was Lilli’s elementary school putting on this play. It snuck up on me. Even when we walked in the door and saw that teacher’s aide, I thought I was fine.

That teacher’s aide was Lilli’s teacher’s aide in her class last year.

I thought about how Lilli went to that school for two years, and would still be in that building everyday if she were not medically homebound because of her uncontrolled seizures. I thought a ridiculous, heartbreaking thought that she was the same age as those other kids, and that I wished she could be up there on that stage dancing and singing with them. I went down that mental road that a mom of a special needs child should never go…the “What if” road. As in, “What if Lilli did not have special needs? Would she be friends with those kids right now? Would she be in the play? Would she have been picked to be Dorothy? Or a Munchkin?” I was torturing myself and discreetly wiping away all of my mascara.

Singing and acting talent runs in our family. I thought about how Lilli recently put her hand on her neck and typed on her ipad that she wished she could sing. I wish I had handled things differently that day. We were listening to a kids CD in the morning called “Seeds of Courage.” I love the first song, where there is a solo part that is sung by a young girl. Every time I hear it, I think about how I love her sweet, clear voice. Lilli was standing near me during that song that morning, and put her hand on her neck like she wanted to say something. I pulled out the ipad and asked her to tell me what she was thinking. She typed that she wanted me to turn it off, because hearing that girl made her want to sing. And she can’t. I turned it off and sat down with Lilli. I told her that everyone has different gifts.

I said those exact words to her, and I meant a lot by it. But I obviously just thought the deeper meaning to myself, and did not bother to explain it out loud to her. Hours later, she typed to her therapist Morgan about “opening presents.” Morgan was confused and did not tell me until later. By the time her teacher Leslie came for Lilli’s two hour block of afternoon school time, Lilli was really upset. I asked Leslie if she could figure out what was going on, and she told me Lilli kept typing that “everyone has gifts,” and she wanted to “open them now.”

Oh.

I had to explain to Lilli that there were no presents, and that when I said “everyone has different gifts,” I meant talents. Poor girl went all day thinking that she was going to get a present, because I had told her “everyone has different gifts.” (We must be careful to be literal when speaking to our children.)

But even though it is a hard concept for children to understand, it is true. Lilli does have gifts. She has gifts and talents that I do not have. To see her on the outside, strangers might think she has less than other, “typical” children. But to know her, she is incredibly blessed, and we are only beginning to learn what Lilli is able to do. And bonus for us, she is a blessing to others. There are people in Lilli’s life who adore her, who love spending time with her, and who want to know what makes Lilli tick. She can touch other people’s lives in a way that most cannot. That is a gift.

So back to the dark auditorium, where I am wiping my eyes.  I guess everyone does this in some way or another. We can all mourn the thought of how “things might have been” or “should be.” I think it might be normal for any parent of a child with special needs to have these thoughts from time to time. We can’t help it. We see another child the same age as ours and start to think about the what ifs. You can do that with any situation in your life. Especially the situations in which we had absolutely no control. What if things had been different?

 But that’s just it. This is the way it is.  And it is for a reason. For a greater purpose than we can fathom. There is a verse in Psalm 139 that says, “All the days ordained for me were written in your book before one of them came to be.” This is the verse I go to when I feel like life is spinning out of control. I believe it with all of my heart, but I need to read it constantly to be reminded. To be reminded that God is in control. He has it all planned down to the finest detail. He has my future already planned, and he has Lilli’s future planned. I take great comfort in that, knowing that He has plans for my little Lilli.

All of our children are going to have different gifts and talents. They may not all be up on stage. They might not all be running on a sports field. They may not all be exceptional artists or musicians. But each one will have their own purpose in life, blessed by God and created to do different things. Why do we waste time lamenting about how we wish things could be?

As for hope.

I do not think it is human nature to always have hope in life. We need to be constantly reminded of our hope, and what we put our hope in.  I do not know what the future holds for Lilli, or for any of our children.  But I remind myself of the hope I have in Jesus, and in His word. Because I put my belief, trust, and hope in Him, I have faith that He knows our future. And He has great plans for Lilli. And His plans were for Lilli to be born this way, here, now. To us. That I would be her mother. And she has a purpose for being here. She may be different than all of those kids dancing and singing up on that stage. But she has other gifts.

We just can’t see all of them yet.

Lilli kissing Chloe (who is wearing her Dorothy from the Wizard of Oz costume).

Hope from a Funeral

I recently got back from the funeral of a close loved one. This dear person always asked about Lilli. Always prayed for her. Knew that I had a difficult and challenging situation. She listened to me. She cared about me. She showed love to me and to my husband and children. I will miss her.

I flew there by myself, for several reasons. When people at the funeral asked about my family, I did not try to explain that we could never fly with Lilli. At least not right now. I cannot imagine how we ever would. Out of the long list of reasons, I think autism and sensory issues are on the top; a close tie with seizures. Aside from the insane panic that a potentially life-threatening seizure would cause on an airplane, I also think of how in the world I would keep her from shrieking, pushing, crying, bolting. How I would get her through the crowds of people in the airport. How she runs away from me. The public bathroom. The meals. The simple act of getting her to walk down a teeny aisle and into a claustrophobic seat. Traveling by car is challenging enough. If I have a hard time dealing with some things in a mini-van on the side of the road, I am pretty sure I would not be able to handle them well at 30,000 feet. Closer down toward the bottom of the list is the minor fact that college students (which I consider us to be since my husband is in school full time and we are living on school loans) do not have the luxury of flying whole families across five or six states at the last minute.

How I wanted to go as a family. How I wanted to take even just one child with me. I am now beginning to see how unfair I have been in the past, to Lilli. Before we knew what was going on in her mind -  that she is really "in there," and cares deeply about what any other child cares about, it was much easier.

Before, it was easier for me to say, "I'll just take Chloe. I can't take Lilli." I didn't think Lilli would care, or understand. Now I know that she does. For this trip, I had the fleeting thought that I could drive the 12 hours with Chloe, and maybe Josh too. But there was no way I could take all three. I would not even take Lilli alone for many reasons. The drive was long for the short time I would be there. I looked at trains. I looked at flights. Since I could not take all three children, and it was unfair for me to take one or two, and ultimately we could not even afford a plane ticket for any of them, I took no one.

In the end, I flew up by myself with pictures of the kids. I look forward to the day when traveling is easier. But honestly, I do not know if that day will come. I will just have to hope and pray that it does someday. It is hard to see into the future when you are in the thick of things.

I came home with a hundred or more memories, saw people I had not seen in decades, and had the rare chance to hug my siblings, nieces, nephews, cousins, and dear old friends. Of all the meaningful encounters, reunions, and shared tears I experienced, I will only share one here. Not because it is any more important than anything else about my trip. But because this blog is about Lilli, and about me being Lilli's mom.

A woman came up to me after the funeral. I had not seen her in at least fifteen years. She introduced herself as Amy's mom. But I knew who she was before she even spoke. I went to youth group with Amy. I remembered her right away. I asked about Amy and she showed me pictures of Amy's beautiful family. But then she asked me about my children. She knew I had three children, and she knew I had one child with special needs. How did she know? I assumed prayer lists, women's groups, and word of mouth probably. I explained how we came to live where we do because my husband is going to school. And that the reason he is going to school is ultimately because of Lilli, and other children like Lilli.

She said, "Yes, children with special needs have a way of changing our lives like that. I became an OT to help my son."

And that's when I remembered Steven. Her son.

Steven has special needs.

It's funny how perspective changes in an instant. In a split second, I zipped from a teenage memory of Steven at a youth group activity, quietly hanging out near his big sister... to a mother speaking to another mother of a child with special needs. In a flash, I had a completely new view of Amy. It is how I look at Josh and Chloe now. How they are the siblings. How they will spend their lives helping and encouraging their sister Lilli because she has special needs. Amy became a doctor because of Steven. I did not know that. I had an instant longing to sit down and ask this mother to tell me everything she knows for the next five hours.

Instead, I asked how old Steven is now.

He is thirty five. Two years younger than I am. She smiled as she told me how well he is doing, how he has a job and friends through the programs he is involved in. How he is happy. How he has activities and a social life. How she used to think that life would "end" after school, but then found out that it was only just the beginning. That great programs and activities do exist in some areas for adults with special needs. She told me to have hope. And it brought tears to my eyes and soothed my worried heart. Even now, tears are springing up as I think about how her few words will impact me forever.

I later thought of another mom that was there, who has an adult daughter with Downs. I wish I had spent time talking with her also. She said hello to me, but I was distracted. I wish I could go to lunch with these mothers and talk with them for hours. There is nothing like talking to someone who has "been there."

I take rare messages of hope from others and breathe them in like oxygen after swimming up from deep waters. I tuck them away and treasure them like prized possessions. What a strange, sweet interruption to mourning as I reunited with this mother of a boy I knew so long ago.

She gave me hope. I wonder if there is any better gift in life to give to a person... than hope.

Not Speechless…Brilliant

I am utterly speechless at this week's events. It doesn't matter, though, because Lilli is certainly NOT speechless anymore. And that is the miracle that continues to unfold at our house on a daily basis. From last Saturday to today, we have traveled years. As always, there is too much to tell in a blog post. It would be a book. Perhaps one day, it will be one. If not by me, it will be authored by Lilli herself.

I have to admit I am a little frustrated at the timing, for the sole reason that I do not have enough time to write every tiny detail down. Jasen is in his most intense time of school yet; 12 hour days taking classes in the mornings and treating patients in the clinic all afternoon until after dinner every night. For the past two weekends he has been gone all weekend for board reviews, and boards are coming up in March. If he ever seems like the absent father in my blog, he is far from absent. What he is doing is all a huge part of Lilli's story, which will just have to come out in future posts. He helps when he can, and he is a great dad. In the meantime, I continue to wade through the days, sleep deprived from a sick toddler this week and only slightly overwhelmed by the mounds of housework. But my heart is full of joy, and my mind full of wonder and amazement. I feel compelled to let the housework go for a little bit and write as much as possible while Josh naps. Mainly, I want the world to know that a non-verbal child who does not make eye contact, chews on toys and makes squealy sounds at inappropriate times just might be highly intelligent and very aware. I want other parents like me to look at their child with hope and possibilities. And I want others who know Lilli to know how to treat her.

There is no way I can sum up in one post everything that happened this week. I am unsure of how to begin. Lilli is typing incredible things, revealing new heights of her intelligence. She can read several sentences at once and do math. She is typing longer sentences and answering questions. Her true feelings about people and situations are coming out. "Treat me lik a big grl" is her most-often typed phrase. This week she told me that she wanted to read "big girl books." We stopped reading the baby board book Moo, Baa, La La La to her and started with her very first book request: The Secret Garden. ("Secrt grdeen"). It happened while I was reading Ten Apples Up on Top to her very slowly, and she was mad at me. I asked her to type and explain why. It turned out she wanted me to read a different book, The Secret Garden. She told me she had seen it in Chloe's room on the floor once, and liked the cover. She described it to me perfectly. ("gree frrst key" – green, forest, key). I had not seen the book in months, yet she typed the title and told me what it looked like. I found it in a box in storage in the basement. It had been in that box for months. Yet she remembered the cover and how to spell the title (close enough).

When I pulled that book out of the dusty box in the silent basement and looked at it with a flashlight, the "scales" fell from my eyes.

She's not just "aware." She's brilliant.

How did she learn how to read? How long ago had she seen that book and wished someone would read it to her? Possibly last summer. Maybe farther back than that. It was too advanced for Chloe, so I'd packed it in a box labeled "older books" along with some Magic Treehouse books and Charlotte's Web, among many other favorites of mine from my teaching days. Does she have a photographic memory? How did she remember the title? I have never typed the words "secret" or "garden" with her. I asked Leslie and Morgan too. No, they had not either.

It was not the full length novel, it was a shortened chapter book version. She sat and listened to the whole thing, and typed that she loved it. She since has listened to The Velveteen Rabbit, Cloudy with a Chance of Meatballs, and several other short chapter books. I came home with a stack of Cam Jansen Jr. Mystery books yesterday. She likes them. Leslie started reading Roald Dhal's The Magic Finger to her. We literally jumped from baby board books to second and third grade books in a day. Unbelievable. I don't care for the phrase, but I feel like we have been "dumbing her down" all this time because we did not know she could read. No wonder she sat and flipped through those baby board books with boredom. She has had them for eight years. Nothing against Brown Bear Brown Bear, What Do You See? but sometimes you just gotta move on. The important detail about all of this is that Lilli does not act like she is listening. She crawls around, chews on Lego Duplo blocks, and rarely even gives the book a quick glance. For years the teachers at school were making her sit at a kidney bean table and trying to make her flip through board books and LOOK at the pictures. TURN pages. POINT at the picture. She hated it and struggled, most of the time throwing the books on the floor in anger. I guess she doesn't need the pictures, and she probably was mad because they were "baby books." I'll have to ask her about that.

Among many other revelations, she also typed that she was mad because the nurse talks to her like she's a baby, that Chloe "bugs" her ("her bug me"), and that she wants to ride a bike like Chloe with two wheels. She is not happy with how differently we treat her and her sister. How do I deal with this? Lilli cannot brush her own teeth or dress herself. She has a long way to go with using utensils and has never attempted to brush her own hair. She does not want to be treated like a baby, yet she needs help like one in so many ways. I have been focusing on the things she can do that Chloe does not, such as read, type, and ride a horse. (A therapy horse, but still.) This is sibling rivalry through an ipad, a new experience for all of us. Lilli's pent up years of frustration are tumbling out through mixed-up, misspelled words on a screen. The "auto correct" feature makes things even more confusing.

Her eighth birthday celebration is too much to write about in this post, but can be summed up with one word: moody. She named her birthday fish "Grover," and loved her new Polly Pocket doll. (I told her that is something an eight year old would like. At the last minute I had to run out to Target and shop in the "big girl toy" section to make sure she got something that Chloe did not already have. Just a few short weeks ago I was shopping in the preschool Elmo section for her.) She can match rhyming words, listen to an entire chapter book and answer questions about it, and seems to know way more about math than we realize. I predict that this coming week we will be blown away by her knowledge of math. I told her that I would teach her how to play the piano, and I have been talking to her about chords, sharps, flats and octaves while using a piano app on the ipad. Every day this week, she has stood in front of our piano and experimented with two note "chords." Will a child with cerebral palsy be able to play the piano? Only time and miracles will tell.

Dumbfounded is an understatement for all of us right now.

I read the "Hello Reader" level 3 version of A Girl Named Helen Keller to her today. After I'd read her the entire thing and she hugged and kissed me at certain meaningful parts throughout, I asked her what she thought of the true story (which parallels Lilli's in many ways.)

"Really cul." (really cool)

She told me last night that she knew that no one believed in her. I asked her what changed. She typed "you helped me." But I think Chloe actually has more wisdom about all of this. This morning I asked Chloe, who has been getting the brush-off a lot his week as I've focused on communicating and typing and reading with Lilli, "Do you know what is happening with Lilli right now?"

Chloe answered, "Yes! She knows how to read! It's a miracle! Jesus helped Lilli know how to read!"

Yeah, I think so too Chloe.

New book for her birthday from Morgan. Lilli picked out her own outfit. Such a girl.

Reading her birthday card from mommy and daddy. Earlier, she typed that she was mad because Chloe was so close to us, and did not want her next to her when we sang happy birthday. Oh the sibling rivalry!

working on rhyming words with Leslie