Asking the Wrong Questions about Down syndrome

Last updated on: October 3, 2011 at 10:02 am by Amy Julia Becker

Asking the Wrong Questions about Down syndrome 2011-10-03T10:02:45-04:00 Amy Julia Becker

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A few weeks back someone asked me, “When did you know there was something wrong with your baby?” I hesitated for a moment before answering, because I’m not convinced that there was something wrong with my baby. I think he meant, “When did you find out Penny had Down syndrome?” and I certainly understand the equation. Down syndrome=something wrong. Right? Well, maybe.

Two hours after Penny was born, we found out that she had Down syndrome. We already knew–from ultrasounds and an 8 on her Apgar test at birth–was that we had a healthy baby. She nursed well. She cried heartily. She had an echocardiogram and we learned that her heart had two holes that should (and did) close on their own (she had a different hole that they found later and needed surgical intervention). She came home from the hospital two days later, as with most newborns. So–on the one hand, we found out something was wrong with our baby, and on the other hand, nothing was wrong except these words–Down syndrome–that brought with them fear of the future.

It’s almost six years later now, and I still wonder whether there is something “wrong” with our daughter. She wears glasses. She’s impulsive. Potty training was tough, and she still has accidents some days. When she gets a cold, it’s likely to turn into a barking cough. She’s had tubes in her ears twice. She has Down syndrome.

And she’s a cute, wonderful, sweet kid who loves to give hugs and organize games of Duck Duck Goose and pump “super high” on a swing and listen to stories. She’s a kid who has a different favorite color every day, a kid who loves to sing “Alleluia,” a kid who jumps up and down at the news of a special treat. She’s a kid.

It was a long time ago that I realized I couldn’t categorically say that there is something “wrong” with our daughter. But I can say that there are many things about her that are exactly right.

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