Tuesday, May 11, 2010

"Dance around the chair"

When I first got the news that my baby would be born with Down syndrome, I decided that I would tell everyone in my life right away. In fact, the very first thing I wanted to do was to get this news out of the way, so I could find out who was with me, who was against me, and who I had in my corner to draw support from. It turns out, it was a great choice for me. Considering that no one ever really "knows what to say" in these kinds of situations, I had almost the perfect thing said to me by everyone who mattered most. Slowly, the responses that I got helped me to see that everything would be alright, and maybe...maybe everything would be better than alright. There were also the days while I was still pregnant, that I would come across a perfect stranger who would gush on and on about my pregnancy. (You know the type: She automatically touches your belly without asking and begins the series of questions like, "When are you due?", "What are you having?", "Is this your first?", and then follows up with the inevitable Advice or Fact.) I never minded these encounters because during them, I didn't have to be "the girl who is having a baby with Down syndrome". I always felt a little like I was pretending...that since I hadn't revealed all of the news, that I was lying (by omission) just a little. When I didn't tell the whole story, I didn't have to hear the awkward silence or the "I'm sorry" or even the perfect-thing-to-say-that-never-ceased-to-make-my-eyes-well-with-tears. I just got to be the glowing, pregnant chick.

I don't know if all newborns with Down syndrome start off looking as adorable and typical as my little Elijah, (Consider the bias here) but while I do see some traits of Down syndrome, they are slight, and other people say they really don't "see" it. All that this means for me is that I don't have to do any explaining right now. I get to go to the grocery store and just be the Mom-of-a-newborn. I can show off my baby to perfect strangers who ooh and aah and don't see anything 'different' about my youngest son. This is kind of a relief. I feel myself holding my breath about all of the possible scenarios that might come up... The cruel things that kids can say and my wanting to explain, protect and stand up for my baby because he is a little different. When I think about it, there really are only two things that I hold my breath about when it comes to Elijah: the medical complications that can accompany Ds and the fact that people can be cruel and/or ignorant. See, when I am in my cozy circle of trusted friends and family I don't worry about cruelty. It is only out there in the world of strangers. So, I'm feeling glad to have a temporary hall pass from strangers' responses. Is that weird? I wonder what it is about someone being different that triggers so much fear and uncertainty? This thought led me to a new awareness today: I was at preschool with my son Christian, and they did a little song and dance called "Dance around the chair." In it, a small chair is placed in the center and a child circles the chair while everyone else sings, "Chris-tian, Chris-tian dance around the chair...Chris-tian, Chris-tian dance around the chair...Chris-tian, Chris-tian dance around the chair..dance around the chair!" What I noticed today more than I ever have before, was how different each of these children really are. There was Wendy, who smiled a big smile and confidently but slowly circled the chair. Then there was Dash, who circled the chair really fast, and then would change direction just before he had completely circled that chair...making kind of half-circles in his wake. Charlie ran really fast around the chair only once and then ran straight back to tackle his Mom. My Christian circled the chair and laughed hysterically, as though he were being chased AND tickled at the same time. Each child was so. very. different. Deep, huh? It just really got me thinking about how we all fear different even though we all already are. As kids, we spend our days trying to fit in, and then we spend our adult years in therapy trying to figure out who we are. It might be a stereotype to say that kids with Down syndrome don't waste their time on this. But in the limited experience I have had with people with Ds, I have never once met anyone who spent their time trying to be someone they're not. I find that refreshing. And even if it is a stereotype, I hope that is a trait that my Elijah gets. And I hope it's a trait that my Christian can have too. Because I was very proud of my hysterically laughing chair-dancer today. And I hope that Life doesn't ever squash that part of him.

1 comment:

Bethany said...

Great post Jen! I got your email and will respond later today (gotta run to therapy - LOL), but I wanted to say that what you are describing here is so normal! I went through the same thing and then started getting annoyed with myself for giving excuses for Payton. In fact, I wrote about this very thing in a book called Gifts - have you heard of it? If not, let me know and I'll send you a copy. I have extra since I was a contributor. :) Here is the link to my story on my blog ...