November 7, 2008 1:43 PM
Down syndrome - a mistake or part of God's plan?
Babies Perfect and Imperfect
by Amy Julia BeckerOur daughter was born at 5:22 p.m. on December 30, 2005. Two hours later, a nurse called my husband out of the room. When he returned, he took my hand and said, "They think Penny has Down syndrome." As this news began to make its way into my consciousness, we heard shouts from the room next door. Another child had been born. "She's perfect!" someone exclaimed about that other baby. "She's perfect!"
Once we found out that Penny had Down syndrome, we had a hard time celebrating her birth. We didn't open the bottle of champagne perched by my bedside. We were afraid to call our friends and family. We didn't shout, "She's perfect."
In fact, those words haunted me. The medical language used for Down syndrome implies a special brand of imperfection: "disabled," as if Penny were a defective piece of machinery that had been turned off; "retarded," with all its connotations of stupid and subhuman; "abnormal," like a cancerous growth. I found no comfort in these terms.
My faith didn't help much either. Without even knowing it, my mind held a theological grid, a mental chart of how the universe worked. The only thing that chart told me about Down syndrome--the presence of an extra chromosome in every cell of Penny's body--was that it was a manifestation of sin in the world. By that, I don't mean I thought Down syndrome was immoral, but I did think that, because the entire cosmos was out of whack, bad things happened. Bad things, like malaria, and hurricanes, and extra chromosomes. And if having an extra chromosome was on par with disease and destruction and other things that are not of God, what did that say about our daughter?
My theology, at first, seemed to affirm the medical language. It seemed that, even by God's standards, Penny was in another category of human being altogether--not merely "fallen," like the rest of us, but defective, a mistake. And yet even in those early, dark hours of her life, Penny's presence--her sweet face and tiny hands and warm body--knocked against my grid, jostled my presuppositions about human wholeness and human sin. I started to understand that Penny was a gift, a precious human being, a child with much to offer.
I began to reconsider my own theological presuppositions. And I wondered--Was Down syndrome a product of cosmic disorder? What did it mean for Penny, extra chromosome and all, to be created in the image of God? Could Down syndrome have existed in the Garden of Eden? Would Penny have Down syndrome in heaven? In other words, was Down syndrome a part of God's good creation, or was it evidence of creation gone awry?
Read entire article at First Things.
Thank you, Eva, for sending me this. I especially liked this part:
Early on, I had asked my mother whether she thought Down syndrome happened because of sin in the world. She responded gently, "The only evidence of sin I see is in how the world reacts to Penny." I began to understand what she meant--that Penny is no more or less human than I am, no more or less born in sin, no more or less blessed, no more or less in need of redemption. When I think of Penny's life to come only in terms of being fixed or healed, I miss the point of what it means for God to redeem and heal each and every one of us.
See also About That Extra Chromosome or my other entries about Down syndrome.
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