Mennonite World Review

I tend to balk at generalized statements about kids and adults with Down syndrome. There’s a part of me that resists on theoretical grounds: I don’t want to stereotype or treat people with Trisomy 21 as if they are in a separate category of human being. But there is also a part of me that resists on practical grounds. “They’re stubborn,” for example, doesn’t describe Penny at all. Her brother takes the prize for irrationally holding his ground in our household. When Penny doesn’t get her way, she tends to shrug her shoulders and change course. “They’re angels” is another one that doesn’t quite fit this child of mine. She comes home from school and tells me, with another shrug of those shoulders, “I hit three friends with my lunchbox today.” She whines and complains along with any other kid I know. Wonderful, funny, beloved, yes. Angel, not so much.

— Photo provided

But recently I’ve been wondering about a few other words I often hear about people with Down syndrome. First, “sweet and loving.” I have to admit, Penny’s empathy meter is off the charts. If one of her siblings is crying, her eyes well up with tears. If she knows someone is hurt, she’s the first to remember to pray for them. For instance, take our babysitter, who broke her foot a few weeks back. A few days ago, around 6:30 a.m., I heard Penny get out of bed and shuffle into the kitchen. She came back a few minutes later with a handwritten note: “I hope your foot feels better. Love, Penny.” It was the first thing she had thought of upon waking. And the stories like that go on and on. Sweet and loving might not describe all people with Down syndrome, but they describe our daughter pretty well.

And then there’s “special.” I looked it up in the dictionary, which told me that special means “of a distinct or particular kind of character.” A later definition reads, “distinguished or different from what is ordinary or usual.” I think I know Penny too well to think of her as “special.” She doesn’t stand out to me among our children. I see her particular gifts and her particular weaknesses, but I see William’s and to some degree Marilee’s too. Maybe I see them all as “special.” But throughout her life, other people have insisted that Penny is indeed special, in a way that is hard to define. There was the babysitter who described their time together as a “spiritual experience.” Or my friends who say they aren’t “kid people” and yet long to spend time again with Penny. Or the people who have met her once and remember her name and details about her life because she made such an impression. I’ve never really understood what these people were getting at, why they were so enamored with Penny in particular.

I met a little girl with Down syndrome last week, and I think I had a glimpse of what these friends of mine have experienced with Penny. We only had a few moments together, but I would have gladly spent the whole evening in her presence. It was hard to understand her words, but she was able to communicate something else. Maybe it was that I felt delight, or total acceptance. She welcomed me without question. Our brief time together ended with a kiss on the lips. And as I tried to describe her later, all I could say was that she had an “ineffable” quality. Ineffable, according to the dictionary, means “incapable of being described in words,” and that’s true. The second definition reads, “not to be spoken because of its sacredness.”

I don’t know if there is something particularly sacred or set apart about Penny or about this little girl I met or about other individuals with Down syndrome. But I know my experience is not mine alone, and I know that the word “special,” much as it can be used as a catch-all politically correct term, might be the best way to try to sum it up. I know that I am particularly grateful for my encounter with a little girl with Down syndrome at a dinner party last week, and overwhelmed with gratitude that Penny — in all her particular beauty and brokenness — is our daughter.

Amy Julia Becker is the author of A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny. She writes at Thin Places, where this blog post originally appeared, and lives in Lawrenceville, N.J., with her husband and three children.