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

On Purpose (Happy Birthday, Lilli)

Lilli was born during an ice storm, by emergency c-section in January 2004. 

She had stopped moving in the womb. I knew something was not right. We drove to the hospital through sleet on deserted, icy roads. My husband reached his hand out the window and continually grabbed the moving windshield wipers to thump the ice off, because they kept freezing and getting stuck. I called a few people on my cell phone. We were scared. We did not know what to expect. The doctor was meeting us at the hospital.

Upon being pulled out, she stopped breathing and had to be rescusitated. Twice. She was having seizures, and was transferred to a different hospital to their NICU. To this day we do not know what caused her distress. But lack of oxygen caused damage to the parts of her brain that control vision, language, and motor function. 


Before they took her to the ambulance to be transferred, they wheeled her to my bedside inside an NICU transport incubator. She was intubated. I reached down and stroked her fragile body while my eyes and heart overflowed with the greatest mixture of love and pain I have ever felt.

That first night of her life was the longest night I have ever endured. I was separated from her, and my husband Jasen went with her. Frank, the pastor of the little church we belonged to in Virginia, went with Jasen and spent the night with him at the other hospital while newborn Lillianna Jae endured many tests at the other hospital. Frank's wife, Joyce, spent the night in my hospital room to keep me company and help me, since I had just had major surgery. I will always treasure in my heart and be grateful that they spent the night with each of us, as we began the toughest journey of our lives. I was transferred to her hospital to be with her the next morning. I hear that almost never happens. I spent several days at the second hospital, recovering from a c-section, traveling back and forth from my hospital bed to Lilli in the NICU.

There were two doctors in the NICU that gave us two entirely different prognoses. The first doctor told my husband in a very cold, distant manner that our baby had brain damage, that she would never walk or talk, and she would be mentally retarded. Jasen had to walk out of the NICU, climb up the stairs, come to my room and break that news to me. He held my hand and we cried and prayed.

We were stunned. We needed more information, and later found a different doctor who sensitively explained to us that we would not know how extensive the effects of the damage would be until she grew older. He pulled up the MRI of her brain and pointed out gray areas as he carefully explained the damage. But he gave us hope. He told us that we are "amazing creations," and that sometimes a baby's brain can "re-map" itself as the baby develops, and use other parts to compensate for the parts that were damaged.

We chose to listen to the second doctor, and clung to the hope of miracles.


At one year, she was diagnosed with a type of cerebral palsy called spastic diplegia. Parts of her brain were damaged that affected her ability to use her legs. They were stiff. It was too early to tell whether she would ever walk or even crawl. She was still having seizures. We were also concerned about her speech delay and trouble with choking and gasping every time she ate or drank. She started physical, occupational, and speech therapies. Her eyes were crossing and she needed surgery. We prayed desperately for her brain. We remembered what the second doctor had told us. We prayed constantly that her brain would be healed and that it would "re-map" itself like the doctor said was possible.

Many people over the years have asked what caused Lilli's brain damage. As any mother might, I felt guilty those first few years and wondered if it was my fault that she had cerebral palsy. Of course not, you think, as you read this. If you had a baby with special needs, I'll bet the thought What happened? Crossed your mind. Maybe once. Maybe a thousand times. It's only natural. It didn't help that everyone we knew wanted to know "what went wrong" as well. I desperately researched the causes of CP. It was almost like an obsession. For a few months I spent all of Lilli's napping hours on the computer, typing words in a search box. We met with specialists. What did I do wrong during my pregnancy to cause Lilli to be born this way? I agonized. What happened when she was in the womb? Or was it the actual birth process? Or both? There were no answers for me. No specialist, book, or website could tell us what caused this to happen.

Time passed. I had not quite given up on my search for answers, but I did not know where else to look. Then one Sunday morning when Lilli was a little over one year old, our church had a guest preacher. He had us turn to the book of John as he talked about Jesus healing a blind man. He read John 9:1-3.


As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (NIV)

That was a life-changing moment for me. The words of Jesus pierced my heart and I had the realization that Lilli's disabilities were not a result of something I had done wrong. I understood for the first time in my life that God really is in control of absolutely everything. He had a purpose in Lilli being born this way. He is not cruel. He did not forget about Lilli, or Jasen and me. He did not turn his back and accidently not make her turn out "ok" when she was born. It was not that I ate or did something wrong during my pregnancy and God did "not notice" or help my unborn baby. Every child that is born into this world is a complete and total miracle. If you have ever watched a baby born and held him or her in your arms in the first minutes of life, you knew this. Even if you did not believe in a God, you knew that baby was a miracle, not created by YOU.

God had a purpose in creating Lilli to be exactly the way she is. I did not understand it. But I did understand that God had perfectly and purposely formed her to be born this way so that His work might be displayed in her life. And in my life and in my husband's life. God does not make mistakes. He never says "Whoops." He is not distant or unaware. He is perfect, and He is great with fine details. He is the ultimate "event planner." Psalm 139 says "All the days ordained for me were written in your book before one of them came to be."



It is difficult for some to understand, or believe that God, who is so loving, would let a child be born with a disability. After that day, I slowly began to see Lilli as a perfect creation designed by God on purpose. After watching God work in so many ways in and through Lilli over the course of her life so far, I know without a shadow of a doubt that God loves my Lilli with a fierce, endless, perfect fatherly love that I cannot even fathom. He takes care of her more than I do. I wish I had the time and memory to write even a fraction of the stories of ways I have personally witnessed this. If you think I am a sad, deluded person, then you probably don't know my God personally. And I wish you would give him a chance. He is real. I'm not perfect. People that believe in God and know Him personally are not perfect, they are hypocrites who are filled with failures and they love God because He loves us, despite our failures.


Eight years have passed. I will not sugar-coat them. They were the toughest eight years of my life. Some things have gotten better, and some things have stayed hard. Some things are even continuing to get harder. But now, Lilli can walk, run, read, type words and short sentences on an ipad, feed herself pancakes and chicken nuggets, and has the best laugh I have ever heard in my whole life. She has touched the lives of so many people I cannot begin to count them. When I first started this blog, I wrote that Lilli was a "mystery." Now I think it is better to describe Lilli as a "miracle in progress." From the moment she was born to this very day that I write this, the list of miracles is endless. From the things she is doing despite her traumatic birth and ensuing medical problems, to the way she has touched so many other people's hearts and lives. Most of all, my husband's and mine. If you are reading this, she has touched yours.

"… this happened so that the work of God might be displayed in his life." I feel so privileged to have a front row seat in watching God work through Lilli, and display his glory through her.

It takes time for a mother to come to this realization. I wonder if every mother of a child with a disability goes through this phase of guilt and wonderment. It is so typical for us to blame ourselves and think that we either did something wrong, or we did something to "deserve this." But after eight years, I write with tears in my eyes that I feel blessed beyond belief to have Lilli for a daughter, and humbly feel that I "don't deserve this" blessing of abundant miracles and hope. The world tells us that there is something wrong with children with disabilities, that they are a burden. I'm not saying it isn't hard. It is incredibly hard. But life is hard for everyone, in different ways. There is nothing "wrong" with Lilli. I know that now. She is not a mistake. She is a beautiful, awesome little person who needs extra help. And as we help her, we are drawn closer to the One who created her. She is… well, she is Lilli! Handmade personally by her Creator with great care. Just like you and I were.

Thank you God, and happy birthday, sweet Lilli.
*********

A side-note: Years after that first doctor in the NICU broke the devastating news to Jasen that Lilli would never walk or talk, we were in the ER with Lilli again. She was about four, and had just had yet another seizure. The three of us were waiting in a room in the ER for the on-call neurologist to come in. After several hours, he came to check on Lilli. After a few moments, he said he would be back. Jasen turned to me and said, "Jennie, that was the doctor!" It was the very neurologist that had given Jasen such bleak news on her second day of life in the NICU. When the doctor came back, Jasen could not help himself.

"You were Lilli's doctor in the NICU when she was born," he said. The doctor wrinkled his brow in confusion. He did not remember us. "You told us when Lilli was born that she had brain damage, and that she would never walk. She is walking now. Our God is an awesome God, and He can do anything. You need to give parents hope when you give them news like that." The doctor said nothing. He could not get out of the room fast enough. We never saw him again. But now I know how poetic justice truly feels.

It feels good.

Baby Lillianna in the NICU

Jasen talking to baby Lilli...a daddy's girl from the very beginning

Lilli, running at age seven

 

 

Look at Her Now

http://www.youtube.com/watch?v=JJPmdObQXJs&context=C315f964ADOEgsToPDskIEkd5NyhZjj3TAKroNxLXR

So sorry about the poor quality, my camera is definitely not working right... but you can get a glimpse of what Lilli did today with Leslie. Leslie typed the question "what color is the dinosaur?" on the ipad, but did not tell Lilli what it said. She helped Lilli point to each word to get her to read it silently. Lilli read it and typed "green." She touched the letter "n" several times because it  would not come up. Finally Leslie helped her push hard on the "n" and it worked. This is one sample of many that Lilli read and answered today for Morgan and Leslie. Lilli is definitely typing the letters herself, but Leslie keeps her hand under her arm for support. We hope to eventually fade the support away completely. Lilli gets a ton of credit for typing so well on a small touchscreen despite her cerebral palsy! After she finishes typing, she rubs her hands together because that is her sign language sign for movie. Pretty much she's saying, alright I typed the answer for you, hit play! 

Questions, Answers, and Attitude

We are flying at a fast pace with Lilli. It's almost like time travel. I feel like we have catapulted from kindergarten to second grade in just the last month. In August when we started school, she was working on picking the letters "L" and "I" out on the keyboard to spell her name. I remember helping her type a few words such as Mom, Dad, and go. But I was making her type them. She did not know how to spell them and type them herself. And read? That was a distant dream. Now five months later, she is typing her own sentences and her attitude is coming out though the ipad. Yesterday morning she typed "Let me be." Tonight takes the cake, though, because she typed "Hate u." To me.

I was expecting to hear that from Chloe for the first time, not Lilli. I still cannot believe it. She was furious with me because I would not give her a cheesepuff. She was crying mad, and I told her to use words. So she typed "Hate u." I was a little shocked. But I am getting used to this now. She is smart, sassy, and still frustrated, but now in a different way. She realizes that she has choices, and a voice. I think that awareness is actually causing her to be more frustrated. I don't even know how to explain it. I feel as if she is "growing into her age" at a rapid pace. I used to look at her like she was a three year old in a seven year old body. But this is not a three year old. But she cannot do everything a seven year old can do. She is a mixture of ages right now. She still loves Elmo. She is extremely delayed in her self-help skills. But she is reading and typing like an older child. She types the word "because" a lot. She absolutely knows how to read and spell a long list of words, and she is just now beginning to use punctuation. She wants her independence so much. But she needs a lot of help. And she really wants to express her feelings but can only do it through crying, yelling, or taking the time to type words. Imagine if you had to type out your anger all the time to your parents or your spouse. It's not even as satisfying as writing, where you can scribble hard or break a pencil if you are really angry. It's typing. And it's not like you can bang the "keys" on a touch screen. I can understand why she is still frustrated.

I explained to Lilli that she should not use the word "hate," and she should not say that to her momma. I helped her to do the sign language sign for "sorry." She stood there for a moment, and then she typed "Do u love me?" Wow. I told her that I loved her, that she was my little girl, and that there was nothing she could ever do or say to make me stop loving her, because she is mine. We hugged, and it was over. I cannot believe I had that "conversation" with Lilli tonight.

The little pictures do not come up above the words until after Lilli types the words and taps "insert."

So much has happened in just the past few days with her reading. We think that she might actually be reading ON grade level. That blows my mind. Now I am wondering, what comes next? This is uncharted territory. I think the logical next step is to assess Lilli somehow to see what her reading level is, and then we will know what level books we can use to teach her more. We might have to take an educated guess. But I think we might be able to take an assessment and somehow accommodate it for a non-verbal child who reads and types on an ipad. This should be an interesting challenge.

My sister, a kindergarten teacher, suggested that we informally assess Lilli using comprehension. For example we type a sentence silently, have Lilli read it to herself, and then ask her a question about that sentence. If she can type the correct answer, she can obviously read it. Leslie and Morgan began typing questions to Lilli silently on the ipad, having Lilli point to each word and telling her to read it, and then having her type the answers. We were amazed at the results. She can answer all of the questions. Leslie typed "What is your name?" and she typed back, "Lilli." I wish I had been there to see that. Today Morgan silently typed "What do you like to eat?" and Lilli typed "Cheesepuffs" perfectly. "What color is the table?" Lilli typed "brown." She silently typed her other questions too, and Lilli typed correct answers to them all of them. This afternoon Leslie typed questions to Lilli about scenes in Youtube Baby Einstein clips. They would watch a few seconds and Leslie would pause it and silently type a question about what they just watched. Lilli loved it. For example one question was "What color are the apples?" Lilli typed "red." "What are the girls doing?" Lilli typed "swing." My favorite was "What did the horse do?" Lilli typed "Eat flowr" (flower.)

I have pulled out most of my teaching stuff that I have been saving up for a moment like this. (Such sweet satisfaction for a packrat former educator.) In the past few days I've pulled out boxes of assorted word flashcards and sentence building activities. We went to the library together and checked out another stack of books. (Lilli likes Word Bird books.) We hooked the touch screen monitor to a computer downstairs so Lilli can work on More Starfall.com and PBSkids.com. We put letter stickers on the computer keyboard and Lilli is typing in Microsoft Word to practice using a real keyboard. Leslie and Morgan are typing with Lilli like crazy, and working on another entire list of skills as well. Leslie is using word cards and pictures to have Lilli read and identify words by pointing at pictures. They are working on the days of the week and weather words, and computer skills. Morgan is continuing to teach Lilli to sign, match, imitate actions such as kicking and clapping, and working on self-help skills like pulling up pants and socks. She has a long list of things she works on with Lilli everyday besides typing.

I lay awake at night (well, honestly only because a child has woken me up) and think about what is happening. I think about the next step for Lilli. It's good to keep moving, to keep challenging her. We need to see what she can really do. But not for our sake. For Lilli's sake. I love that this week, Lilli learned that she can read. I love knowing that soon, we might know just how well she can read. For a stay-at-home mom who does the typical stay-at-home mom stuff day in and day out, this is a thrilling experience that gives me possibilities to look forward to when I wake up each morning. Unfortunately, she is not doing all this great stuff with me. But that's because I'm the MOM. I'm the one she yells at and tells me she hates me. Well, I'll take it. Not the "hate u" part. I'll take the fact that she is reading and typing with Morgan and Leslie each day. I'm the one making the pancakes and chicken nuggets right now. I'd better go get to the laundry and dishes.