Garren is eight years old and I did not realize he would be a part of this series until I realized... he has to be a part of this series. God's intricate handiwork in his life is amazing.
I was elated to find out that I was pregnant with my first child. It was a relatively easy pregnancy and not too bad of a labor and delivery. Nothing out of the ordinary, anyway.
When Garren was a week old, we went to see the pediatrician for his first newborn visit. Everything seemed normal. Again, nothing out of the ordinary. However, as the weeks went by, something seemed just not quite right. This was my first child so I was still new at this, but sometimes I think a mother just knows.
I started noticing that his eyes seemed to cross quite a bit. I would mention it to friends and people I knew and several of them said their babies did that when they were newborns as well. Their eyes were still adjusting. At his next visit to the pediatrican I asked about it. They told me the same thing. It was completely normal. We left, figuring the doctor must have known was she was talking about. She's seen probably thousands of babies. This was my first. But still, something still seemed just not quite right.
When Garren was three months old, I decided to take him to a different pediatrician, Dr. George, just to calm my fears and make sure everything was really okay. When Dr. George picked him up for the first time, he noticed that Garren was somewhat floppy. When I told him about the eye crossing, he also agreed that it wasn't normal. I love Dr. George. I don't remember how he said it, but he just had a very caring and compassionate demeanor and made me feel so calm when he was talking about his concerns. Everytime we visited him, the care he gave to Garren seemed like that which he would give his own child.
After that first visit, we had visits with the neurologist and geneticist. The neurologist said that Garren had hypotonia, or low muscle tone, which is what made him so floppy. However, he couldn't say what was causing the hypotonia which led us to genetics. They did a FISH test and discovered that Garren has DiGeorge Syndrome or 22q, which means he is missing part of the genetic material on his 22nd chromosome. In most cases, it's completely sporadic and there is no family history of it, which after more testing, proved to be true in his case.
There are a lot of ways that kids with 22q are affected. Most have major heart problems and cleft palates along with developmental delays. It turned out that Garren's crossed eyes (strabismus) were caused by his low muscle tone and he had surgery to correct it when he was 11 months old. He also had a minor heart defect that was repaired at 15 months. About a year and a half ago he had surgery to sew flaps into his palate to give him the mechanics he needed to have intelligible speech. He didn't walk until he was two years old, and that was with braces on his legs. Honestly, compared to the physical difficulties most kids with 22q have though, I feel that we are very blessed that Garren's difficulties have been more mild.
The biggest struggle Garren faces now are with his speech and emotional development. He has a lot of qualities that mimic autism, especially when it comes to tics and fixations. He's also a lot smaller than most of the kids in his class even though he's a year older than them since he was held back a year after preschool. He doesn't interact much with his peers and almost acts aloof when they try to talk to him. Because of these things, he sometimes gets picked on. Kids ask him why he talks so funny or sometimes make a big deal about not wanting to sit next to him. It really breaks my heart and really makes me want to cry just writing about it. But then there are others who just adore him and that helps.
Over the years, Garren has had different fixations. When he was little, he would spend the entire day just opening and closing doors. I remember once I left him with a sitter and when I came back to pick him up, they said he just sat and played with the door the entire time I was gone!
Then he went through a light switch phase. Imagine how embarrassing it is when you're in the middle of a public bathroom and your child keeps turning off the lights on everyone!
Next it was time and schedules. He still likes time, to some degree. He likes to talk about what time it is. In fact, if he calls you on your phone, his first question is usually "What time is it on your phone?" Then he'll ask the same question about ten more times througout the conversation. He'd bring home his papers from school and they would all have different times and schedules written all over them.
After that it was elevators. I think it's the numbers that fascinated him the most. He liked to watch the floor numbers change. He was quite fixated on elevators for a while, actually... until we got stuck on an abandoned elevator last summer anyway. But he does still like to watch them. The school papers always had elevators drawn all over them this time.
Then it was math. My sister, who teaches second grade, probably did more math problems over Christmas break with Garren than she does in her classroom all year long. Everywhere we went, he would bring along his coloring board and write out math problems for everyone to solve. As you probably guessed... all of his papers from school that he brought home were covered with different math problems... even on the spelling papers. He's actually quite good at math, too.
Last year, my mom mentioned maybe trying him out on the piano. When he was a baby, I remember saying I thought he might grow up to be a piano player because he had long, slender fingers. Still, I kind of dragged my feet on it at first because we had so many other activities going on that I wasn't ready to add anything else to our schedule. Plus, Garren has some issues with focus so I wasn't sure if he would be able to focus enough to play. A few months ago, though, our schedule had calmed down a bit so I thought it might be a good time to test it out and just see how he did and if he liked it.
Beethoven is said to have struggled in school for most of his life and may have even had a mild form of dyslexia. Later in life, he became deaf. Yet, despite his struggles, Beethoven became known as the greatest composer of all times. He had a gift. I think Garren has a gift. I'm not saying he will go on to compose masterful symphonies as Beethoven did, but there definitely seems to be something special there. Within a week of learning a new song, Garren usually has it memorized and is ready to move onto a new challenge. When he's sitting at the dinner table, I notice him tapping his fingers as if he is still playing the piano. He tells me that when he goes to bed at night, he plays the music in his head. At school, his new artwork is piano music. Tonight when I was going through his backpack, I found this:
It looked like just a bunch of letters at the top but I knew it was probably a full song. So I sat down at the keyboard and plunked it out. Sure enough... Mary Had a Little Lamb and Twinkle Twinkle Little Star. (And as you can see, he does still like math as well)!
I remember several years ago, an older and wiser woman I looked up to made a comment to me about Garren. She told me to watch him and see what God was going to do in his life as he got older... how He was going to make a way. She talked about his disability and at times the reality that it can seem overwhelming. But she also told me that although he has these things that will always be present to some degree, that God will provide another way for him. She said maybe he won't be the big school athlete but maybe he'll have a great personality and people will really like him. She told me that when God places a barrier, He also provides an alternate way around it. She said it was like a river that comes to a rock in the stream. The water is forced to go around it but still manages to stay on the path it is meant to go. She told me to watch for that way in which God provides in Garren's life. She gave me a copy of Oswald Chambers' My Utmost for His Highest and sometime later, I read what she was talking about:
A river is victoriously persistent, it overcomes all barriers. For a while it goes steadily on its course, then it comes to an obstacle and for a while it is baulked, but it soon makes a pathway round the obstacle. Or a river will drop out of sight for miles, and presently emerge again broader and grander than ever. You can see God using some lives, but into your life an obstacle has come and you do not seem to be of any use. Keep paying attention to the Source, and God will either take you round the obstacle or remove it. The river of the Spirit of God overcomes all obstacles.
I feel like I'm seeing a glimpse of that when I listen to Garren play the piano. Not only is it something that he seems to have a special gift for, it also seems to help calm his tics and help him to focus. I just thank God for that. Everytime I think about it, all I can do is just thank God.
I have been feeling so overwhelmed lately with finding the right treatments and techniques to help Garren with various different issues he's dealing with right now. And then tonight I found that simple little paper with his songs written out on it. It was just what I needed... a perfect reminder that God has a plan for that little boy and that He has not left us alone on this journey.