As I type, our daughter Penny is downstairs on her phone. She might be commenting on an Instagram post or texting with a friend or sending a video message on Marco Polo. She’s almost certainly sitting in an armchair with her long straight hair pulled over one shoulder, her knees drawn up and feet beneath her, her glasses sliding halfway down her nose. Penny is fifteen years old now. She is her own person, her own young woman, her own beautiful and beloved self. Today is World Down Syndrome Day. It’s a day to celebrate the countless men and women with Down syndrome around the globe. For us, that means it is a day to celebrate our daughter Penny.
Fifteen Years Ago
Fifteen years ago, Penny was three months old, and I didn’t know about celebrating the lives of people with Down syndrome. I still thought Down syndrome was a scary, debilitating, life-impeding reality our daughter had been subjected to through the presence of a third copy of her 21st chromosome. (March 21st has been designated World Down Syndrome Day because it is 3/21, which stands as a kind of shorthand for the technical name of Down syndrome, trisomy 21.)
I see Down syndrome differently now. For one thing, I see Penny’s strengths. She is always attentive to people in need. She is quick to laugh at herself and with others. She is witty and kind. She is sincere and deliberate. But I don’t want to deny Penny’s struggles. She has plenty of challenges that are different from those of typical kids—things as minor as zipping her coat and as significant as knowing how to read social cues and make friends.
On World Down Syndrome Day, I’m Grateful
Still, the same chromosomal condition that slows her down, well, it slows her down, and somehow that means she has learned how to live with greater contentment than I have. Penny is never racing to get to the next thing. She doesn’t need to do it all, have it all, or please everyone. For me, on the other hand, time is always in short supply, so I rush, and overpromise, and grab for more, more, more. I am grateful for a daughter who helps me want to slow down, to learn contentment, to embrace the gifts of this moment. Today on World Down Syndrome Day we celebrate her life alongside the millions of other people in the world with Down syndrome.
To read more with Amy Julia:
- Book: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
- Book: A Good and Perfect Gift
- Every Kid Deserves a Community of Support
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