My daughter has Down syndrome. Would I “cure” her if I could?

We are walking hand in hand, her small palm nestled snugly into my own, its weight a comfort I have come to take for granted. When she was born, I spent hours gazing at that palm, my eyes tracing the path of the crease that ran from one side to the other, the crease I could not find on my own upturned hand, the crease that served as one more “marker” for the doctors.

But I am not thinking about her simian crease, or about her diagnosis, or about those early years of wondering how she would change us and whether we could withstand it. I am simply feeling grateful for the early scent of spring, and the lingering glow of the sun, and that familiar warmth.

I ask, “So how was school today?”

“Good.”

I wait, having learned that sometimes another sentence will come, if only I give her the time. Sure enough, she says, “I worked on my research project.”

“What are you researching?” I ask. I try to sound casual, as if I am not greedy to hear more. This fourth-grade year is the first one when she has been willing, or able, to give me details about her day consistently.

“Down syndrome,” she says. “My big question that I wrote on my piece of paper is, ‘Why is Down syndrome scary?’”

“Huh,” I say, with a lump in my throat…(to read the rest of the article, click here)

Author

Amy Julia Becker

Amy Julia Becker is the author of A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny (Bethany House), named one of the Top Books of 2011 by Publisher’s Weekly, and Penelope Ayers: A Memoir. Her next book, Small Talk: Learning from my Children about What Matters Most (Zondervan) will be published in October of 2014. A graduate of Princeton University and Princeton Theological Seminary, she blogs regularly for Christianity Today about faith, family, disability, and culture. She is also the author of two ebooks, the forthcoming What Every Woman Needs to Know About Prenatal Testing: Insights from a Mom who has Been There, and Why I Am Both Spiritual and Religious. Her essays have appeared in the Motherlode blog of the New York Times, the Atlantic online, First Things, The Philadelphia Inquirer, The Hartford Courant, The Christian Century, Christianity Today, The Huffington Post, and Parents.com. Amy Julia lives with her husband Peter and three children, Penny, William, and Marilee, in western Connecticut.