World Down Syndrome Day and What I See in Penny

Two hours after our daughter was born, she was diagnosed with Down syndrome. The pronouncement shocked and saddened me, but I also felt confused. I thought all people with Down syndrome looked the same: Flat nose. Thick neck. Epicanthal fold of skin around the eyes. Short stature. Cherubic expression.

But I couldn’t see it. When I looked at our daughter, I saw pudgy cheeks and deep blue eyes and long eyelashes and a full head of black hair. I didn’t see Down syndrome. I saw Penny.

Whenever we went out together, I wondered—can people see the little girl that I see? Or are they only able to see a label, a diagnosis, a set of assumptions about who she must be or what she might not be able to do? I imagined a legal document that had been stamped with big red letters, “DRAFT.” And I wondered if people would only be able to see the big red letters, the markers that she did hold in common with other children with special needs. I wondered who would be able to read the letters underneath.

To read more, click here. (This post is the beginning of a guest post on Ellen Seidman’s blog, To the Max, in honor of World Down Syndrome Day.)