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.)

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. dr prem raj p pushpakaran says:

    lets make a mass awareness about this disease that inflicts 3-4 million people worldwide on the World Downs Syndrome Day (March 21)

    Dr. Prem Raj Pushpakaran
    http://www.incredb.org/investigator.php?incredb_id=373

  2. Only a bit more than a week after Down Syndrome Day, I was shocked by an Easter procession in Malta yesterday. Of all the participating children, one was visibly suffering from Down Syndrome. And guess which role they gave him to play? Have a look: http://andreasmoser.wordpress.com/2012/04/01/dingli-easter-procession-children/ – and be prepared to be shocked.


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