I’ve been thinking a lot more lately about the facial features that are common to individuals with Down syndrome. Much like his sister with her altered gait, Nathan is “marked” with something visible that will always let people know immediately that there is something unique about him. Many people will know what that something is, but others will not. Regardless of how much knowledge they have (or don’t) about Down syndrome, they will immediately form an opinion about him and his value, either positive or negative. In one of my previous posts, “My Big Fat Speak Dilemma”, I talked about how I was having an inner debate with myself whenever we are around new acquaintances about whether or not I should mention the Down syndrome. That was only a couple of months ago, and while my actions haven’t changed, my outlook has.
I still wonder if people see it, and I still wonder if I should say anything. What’s different now is that I no longer feel like I am keeping it a secret or hiding it if I don’t say anything, and I no longer am concerned with making someone uncomfortable by bringing it up. What I’m most concerned with now is whether or not it is good for Nathan for me to mention it. On the one hand, I don’t think it’s necessary because he’s a little boy like lots of other little boys and Down syndrome is just a thing that he HAS, not a thing that he IS. On the other hand, this thing that he has makes him a member of a unique (and, sadly, dwindling) population of individuals, and people need to be educated about Down syndrome. Am I doing the greater Ds community a disservice by not taking every opportunity to educate others? Am I doing Nathan a disservice but unintentionally putting a label on him? I don’t know.
I was talking with a new friend over the weekend (you run 13+ miles alongside somebody and you become friends quickly!) She has a friend with a child who has Down syndrome, and we discussed this subject during our 13-mile trek. When this mom notices someone looking at her son, she speaks up and says “His name is A. He has Down syndrome. I’d be happy to answer any questions that you might have about it.” I’m not sure if that’s the approach I want to take. Maybe. Right now, it doesn’t really matter all that much because we are still in the “What a cute baby! What’s his name?” stage. But…I know the day is coming when the looks will start. We already went through it somewhat with Sarah Kate – particularly during the walker years – and I never quite figured out the best way to handle it then. Maybe I’ll figure it out the second time around.
The realization I have come to, though, is that whether I develop a standard protocol or I just wing it based on the situation at the moment, I no longer care what people see or don’t see. I see a friendly, cheerful, beautiful child with the most brilliant blue eyes I’ve ever witnessed (excepting his sister’s brilliant blue eyes that are the exact same hue).
I’m so over it.
About 15 years ago, a friend's dad was showing me pictures of his other daughter's family. He was pointing out the children, and said "And here's Mikey. He has something called Down Syndrome. What that means is that he'll always be grandpop's little boy". I've never forgotten that conversation and how moved I was by his description.