Missing Out on Beautiful: A Reflection on Down Syndrome, Life, and Love

Photo by Chris Cappozziello

In the seven years since my daughter was born, we’ve taken thousands of photographs. At various points along the way, we’ve even involved professionals. But it is rare that the professionals capture what I see when I look at her — the bright expression of delight and interest, the alternately mischievous and kind smile, the light in her eyes. More often than not, they catch her fake grin-for-the-camera, or their flash bounces off her glasses and the image misses her eyes, those globes of sparkling cut glass, or they get the moment just before the real Penny emerges. Most pictures by outsiders, no matter how professional, can’t capture her smile.

Because Penny has Down syndrome, I often feel as though her interactions with the outside world mirror those photographs. People wonder, “Has it hurt your marriage? I hear the divorce rate for special needs parents is really high.” Or they ask, “Is it hard on her brother and sister?” Or they say, “You were so brave to have more children.”

And just as I don’t know how to tell photographers the way to capture her smile, I don’t know how to tell the social bystanders the way to capture an accurate portrait of our family. Sometimes I argue, citing statistics that the divorce rate for families with children with Down syndrome is actually lower than the average population, or that siblings report pride and happiness with their brother or sister with Down syndrome. Sometimes, I shrug the comments off.

Other times, I try to come up with an anecdote to gently suggest that the ways in which Penny’s life is a burden by no means outweighs the ways in which her life brings blessing and beauty into our home. I talk about her willingness to share with her siblings even when they haven’t returned the favor, or her insistence upon thanking everyone who serves her in any way — at a restaurant, at ballet class, in a store — even if it means going back and seeking the person out. I think about her offer to pray with me on the day I broke down in tears after an argument with her brother. I think about the glow on her face when she works hard to read a new book out loud, the excitement when she asks me to give her “medium hard words” to spell. I think about the gentleness of her hand in mine, the gentleness of her spirit, which is hard to put into words.

Continue reading Missing Out on Beautiful on The Huffington Post’s Parents Page.

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. Jennifer Wojcik says:

    Amy Julia, people are strange about “disability” in general. I am amazed at the things people ask, with regard to Jerry, our marriage, our life together, my choices…people miss out on the beautiful, *a lot* — I appreciate your writing because even though our circumstances are different, you are able to articulate a lot of what I experience. And I am grateful for that…. Thanks.

  2. What a beautiful portrait of your daughter! Although I am not a Down’s child, I was born with a birth defect, so this especially touched me. Many blessing to you, courageous mom!

  3. “I lose some of my own humanity every time I judge another human being as if their life is one to be measured on a scale, rather than received as a gift.” My favorite quote EVER!


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