Yesterday was World Down Syndrome Awareness Day. I had planned to sit down and try to write some eloquent words about what this day means to us, but I chose to spend whatever free time I had yesterday snuggling my little Luke instead. Jackson and Olivia are way too busy these days, so Luke has become our resident snuggler. Plus, I just couldn't come up with the right words to express exactly what this day means to us. It means accepting where we are and celebrating how far we've come. It means that we are a special family with three special children...not just one. It means loving more than we ever thought possible. And it means we are proudly part of a community that I so wanted to reject the invitation to just 18 months ago. After Luke was born, we so often heard the words "God only gives special children to special people." But, I like much better how one of my new friends put it recently... "Special children make special families." In other words, we weren't special before we had Luke. We weren't "chosen" because we were special. Luke made us special.
I remember World Down Syndrome Awareness Day 2010 in a much less celebratory way. I remember thinking screw Down syndrome and all of its complicated issues. Luke had just come out of the hospital with RSV, and we had just started noticing the strange arms and legs movements that we'd soon come to find out were a rare and serious neurological disorder called infantile spasms. It was hard to celebrate Down syndrome when Luke seemed like such a fragile child who just couldn't catch a break. Now, I'm proud to say, he is happy, strong, laid-back, gentle, and determined little boy. If I could bottle up his laugh and sell it, we'd be rich beyond words. I'm biased, of course, but he is seriously the sweetest thing you'll ever meet. I was away this past weekend to celebrate my sister's upcoming wedding and didn't get back until late Sunday night. When Luke first saw me yesterday morning, he gave me the biggest smile and started clapping. Melts your heart.
Thank you to everyone for always thinking about Luke and asking for updates. I think I've mentioned before that he has been having trouble sleeping since last summer. Things finally got so difficult that he had an overnight sleep study done at Children's several weeks ago and was diagnosed with severe obstructive sleep apnea. The first line of defense is to remove his tonsils and adenoids (which he's already had partially removed) to see if this provides breathing relief. It's a risky and fairly rare surgery in someone so young, and we have gone back and forth on whether or not to go through with it. The sleep doctors agree, however, that the apnea has to be treated before we start to see more serious side effects. So, this Thursday we will be at Children's for the surgery. He'll be in the ICU at least Thursday night, but we are hoping to be home on Friday. Fingers crossed that there are no complications and he comes out of it without issue. The one good thing about his G-tube is that we won't have to worry about dehydration because we can just feed him directly through that, bypassing the mouth completely. Again, thanks to everyone for thinking of him and taking the time to read here for updates.
On this World Down Syndrome Awareness Day, I am aware of so many things. I am aware of the challenges that Luke may face in the future but, most importantly, I am aware of how lucky we are to have him in our lives and to have such wonderful family and friends who will help us support him through those challenges. Happy World Down Syndrome Awareness Day!
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