Magazine article First Things; A Monthly Journal of Religion and Public Life

Babies Perfect and Imperfect

Magazine article First Things; A Monthly Journal of Religion and Public Life

Babies Perfect and Imperfect

Article excerpt

Our 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, josded 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?

I wasn't the only one asking diese questions. Amos Yong's Theology and Down Syndrome, Thomas Reynolds' Vulnerable Communion, and Hans Reinders' Receiving the Gift of Friendship have all been published within the last year, and all consider theological questions surrounding both physical and mental disability. Together these writers provide a nuanced understanding of what it means to be human and what it means to anticipate a fully redeemed and restored, perfected humanity.

Before I read these books, and before Penny was in my life, I thought of perfection in largely individualistic and physical terms, as if one day God's redeeming work would make us all little superheroes-strong, beautiful, intelligent and incapable of making mistakes. These authors, however, recognize the full and even exemplary humanity of the individuals our culture calls disabled. They recognize the significance, both here and now and for all eternity, of "the least of these." Yong explains, "The world, as created, is contingent, limited, and finite (as opposed to the divine infinitude). Yet contingency, limitedness, and finitude are not essentially evil, even if the human experience of suffering (and evil) is sometimes derived from these realities."

In other words, from the moment of creation, human beings have been needy and dependent creatures. The initial sin of Adam and Eve was to attempt to become like God instead of accepting their inherent limitedness as humans. …

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