Okay. I’m feeling guilty. I read yet another story about a parent who looks at their child with Down syndrome and can’t see anything but the child.
I even got to hold a little baby with Down syndrome recently. And honestly, after recognizing those sweet tell-tale signs of Down syndrome, truly, all I saw was a sweet, sweet, little boy, more special than most, but still all baby boy.
I look at my Noah, from every angle, in every light, in every situation, and I see Down syndrome. I love Down syndrome, but that is truly what I see. I see a little boy who has Down syndrome woven into every gene in his precious body. Woven into every utterance, every expression, every sing-song step he takes. It doesn’t discourage me, doesn’t depress me, in fact most of the time it makes me feel just plain privileged to be a part of his life.
But sometimes when I mention to people I have a son with Down syndrome, they just nod and move the conversation right along like if I said I had a son with blue eyes. I mean, at least if he had blue eyes, they might say something like, “Oh, I love little boys with blue eyes.” It’s a bit surreal to me. Sometimes I want to shake them and say, “Didn’t you hear me? I said he has DOWN SYNDROME!” I don’t know what I expect them to say, I’m starting to think the best thing to say to someone when they tell you they have a child with Down syndrome is, “Wow, how is that?”
I guess this is on my heart because of that little precious baby I got to hold. I am unsettled. How can it seem like such a minor detail in someone else’s child, but in my child it is everything? I don’t think it should be everything. I don’t think anyone who knows me could accuse me of not loving my child. Oh, how I love that precious child of mine! But am I seeing past the Down syndrome? Am I missing out? Or am I just dealing with it, minute by minute, day by day? He’s almost 7. Should I be seeing things differently by now?
If there is a right way and a wrong way to “do” Down syndrome, I think I must be doing it wrong. Just don’t tell Noah. I don’t think he knows.