Thursday, October 13, 2011

31 for 21: Mass post. Celebrating Down syndrome

Okay, I've been deficient. I'm hoping to catch up, but I don't want it to be anything like this obscure song by Ben Folds (whom I happen to love, and love the song too...beware of curses if you watch the video)

Now on to the task at hand: Celebrating Down syndrome.

Ten months ago, I never would have thought I could do this. I'm pretty stoked that I can even type those words without wanting to cry or throw my laptop at the wall. There are many things that I don't celebrate about DS, but that's not what today is for.

I celebrate DS for two major reasons. The first is the community of families that you are immediately embraced into when you have a child with DS. We don't all agree on everything...some of us don't ever agree on ANYTHING. But we are all linked together with this common bond of an extra chromosome. We recognize each other at the grocery store, or at Cracker Barrel (shoutout to Bill, who will get his own post sometime in the future). We have offers of "call me any time, I'm happy to answer your questions" and better yet we take up those offers. Even at 10:30pm when the baby won't eat and we don't know what to do (Thanks, Kyle).
The DS community is especially important to our family. We live about 14 hours driving away from any of our relatives, including grandparents, and not much closer to any of our closest friends. Sure we have friends where we live, co-workers and fellow parishoners. Our circles are small, yet not particularly close-knit. The outpouring of support for us by those we know has been great (we had meal deliveries at least twice a week for the first 6 weeks or so of Sam's life, including a Christmas lasagna feast!), but it doesn't take the place of true family, or those friends who know our hearts so well that we call them brothers or sisters anyway. Only one of our friends has a child with any special needs (and this discovered after Sam was born), so having the DS community to support us through our early days was so important. Now that we are right in the thick of it and in a position to start supporting other families, I can say that we have true friends in the DS community too. They live about 7 minutes from us, but I doubt we would have ever become friends if not for both our babies having DS.

The second reason I celebrate DS, which is much more personal, is the very early parenting lesson it taught me: One cannot control the course of her child's life, nor should she try to pin her own self-worth to the value the world places on her child.

While I was pregnant, I read this and thought "Oh, how sad." But the more I thought about it, the more I considered that I would definitely want my child to be advanced in every way. My husband and I are both health care providers, with doctorates. Members of honor societies, dean's lists, and numerous extra-curricular activities both in high school and in college. I expected our child to be this way as well; I bought classical music CD's and books about teaching a child a foreign language, hoping the little kicker would be learning his third or fourth by the time he reached high school. I researched 529 plans, assuming our child would be headed for the Ivy League. Before he was even born, I had made all these projections onto his life based on what I wanted for my own life. I assumed that our baby, who had yet to stop swimming in amniotic fluid, would hit the ground running, collecting accolades all the way to Stockholm.

I am happy to announce that I am much less a mompetitor now. I say "much less" rather than "not" because I am trying to keep honest. But the truth is, the competitive streak still exists. I feel like we are in constant competition with the lists of developmental milestones that our doctors and therapists give us. I am also a little competitive with other parents (mostly ones whose children have DS, but a couple of typical kids as well), and love to hear that Sam has achieved something before another child his age. I take it hard when we don't meet a milestone on time, and I am especially fearful of falling behind even the average child with DS. I am hoping that staying home with Sam will let us work with him more than the hour or so per day he was getting before. I am much more accepting of Sam's God-given strengths and weaknesses, too.

Although I feel the need to compare to other kids, I know that checking my mompetitive streak is something that I will bring with me into the future parenting adventures that I hope to have. My future kids will have Sam's 47th chromosome to thank.

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