I am my sister Barbaraâ€™s legal guardian. Sheâ€™s five years older than me and has Down syndrome. She wasnâ€™t even toilet trained until she was 6. Her oddly shaped mouth and tongue canâ€™t quite say the few words she knows. She needs a lot of help and has lived in a group home her entire life.
Bluntly, I know Down syndrome is a big deal.
I am also soon to be the father of a new baby boy. Iâ€™m older, at 41, and my wife is older too, at 38. As the mother ages, the Down syndrome risk rises.
Youâ€™d think all this would make me hyper-alert to the risks of Down, and we wouldâ€™ve signed up for any test available to see whether our child is at risk. But we didnâ€™t. Why, you might ask?
These days, the tests are less invasive, and safer, than ever and recommended for all pregnant women over 35. So, why not know? After all, according to The New York Times, 90 percent of all women who receive a Down syndrome diagnosis from such tests abort.
So, again, why not know? Isnâ€™t it better to end a problematic pregnancy?
Maybe we didnâ€™t find out because when Barbara laughs, her entire face lights up with joy. Maybe because she sometimes snaps her fingers and shakes her considerable rump to music, even if itâ€™s music I canâ€™t hear. Maybe because for the past 20 years, sheâ€™s asked for the exact same present: a Kriss Kross Watch. Meaning, a watch picturing the one-hit wonder rap group Kriss Kross on it. At this point I canâ€™t imagine anyone wants a Kriss Kross watch, if they ever existed, including the sole remaining living member of Kriss Kross. Maybe because I love her as she is.
My wife also grew up near a boy with Down syndrome. They would play together and have the best time. The only problem was that she matured intellectually, and he never did. I realize this isnâ€™t good. But knowing these people as we do and did, I still canâ€™t imagine aborting our boy -- probably the last child weâ€™ll ever have -- because he might have something wrong.
I donâ€™t know if we did the right thing. Either way, though, we are prepared to live with, and love, the results of our actions. Wish us luck.
Do you think we should have tested for Down syndrome?