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February 26, 2008
Having a child with a disability tends to redefine a person. Suddenly Paul and I became that couple who has a son with Down syndrome, not the teacher and the artist. It’s probably unavoidable and maybe not a bad thing. Perhaps it just ads to our repertoire. In the first months after Nathan’s birth, I felt like I was wearing a window over my eyes that read, “Down syndrome.” I read the label every minute of every day. It was foremost in my thoughts and always there. Now, a little over two years later, I don’t think about it all the time and I don’t see it every time I see Nathan. More and more he is becoming just an adorable, clever and funny little boy. I’m not drained by his disability like I used to be. Yes, I do have to think about it often, because I have to deal with his therapies and doctor appointments. But not every minute. I can escape it when I read a book or do artwork. Also, Nathan is a high achiever. At this stage of his development, we’re not hitting the plateaus that I’ve read about. Every week he’s doing new things. This weekend he learned to say the word, “wow.” Last week his verbal word was “home.” Today he learned to blow a flute. I’ve lost track of all of his signs, but it must be up around 80 words. And he’s FINALLY getting the hang of puzzles and pegs. He’s building and problem solving. It’s exciting to watch him catch on. Tonight we just read through an alphabet book and he imitated about four letter sounds. I think we’re in a rapid fire development stage.
Our only struggle is getting him to sleep in his crib all night. He had his ear tubes taken out a few weeks ago and it seems like the position of lying down is causing him pain. He’s always had some sleep issues. Every time I think I’ve figured it out, he has another struggle or night terror. So, another trip to the pediatrician and ENT to try to figure out what’s up. A few nights ago while on our trip to Ohio he woke up about 10 times crying. Tonight I gave him Nasonex in his nose and olive oil in his ears…something new, something old…we’ll see if it works!