Purpose in Life
The glorious burden of a Down syndrome child.
Mar 12, 2012, Vol. 17, No. 25 • By PETER WEHNER
The fear many soon-to-be parents face is the question, “What if?” What if my child is born with a learning disability? What if my hopes for having a “normal” child are shattered? What if I find I can’t love my special needs child as I should? And what if my marriage and faith are broken by the stress and strain of caring for a child with severe learning disabilities?
For Amy Julia Becker, “What if?” quickly turned to “What now?” She was a 28-year-old woman who, immediately after the birth of her daughter Penelope, was told that her child had Down syndrome. At that moment, “the world began to break into pieces, as if I had been looking at a scene through a plate-glass window that suddenly cracked, jagged lines distorting my vision.”
The rest of this beautifully written, emotionally powerful narrative is about Becker and her husband, Peter, trying to put the pieces back together, to rethink almost every assumption they had, and to replace one vision of life with another.
A Good and Perfect Gift focuses on the first two years of Becker’s life with a Down syndrome child. Her account of those years is honest and introspective as she chronicles her emotions, which drift from fear and grief to sadness and uncertainty to anger. At the core of her struggles were unmet expectations: It’s not as though Becker didn’t love her child; it’s that this emotion was twinned with sorrow, “sorrow that you are not who I thought you would be,” as Becker wrote in her journal shortly after Penny was born. Sorrow that so many of the hopes she had for her child would be beyond Penny’s reach. Sorrow that her life was going to be so much harder than it is for most mothers. Sorrow that she didn’t get the baby she thought she deserved.
It didn’t help that several of Becker’s friends and acquaintances, in their effort to be helpful, inflicted inadvertent wounds. “Everywhere we turned,” she writes, “I found people with marvelous intentions and misplaced compassion.” Some tended to downplay the hard part and overemphasize the good; others portrayed Penny as either a rebuke or a reward from God; and still others referred to Penny as Becker’s “cross to bear.”
Then there are the encounters with physicians, genetic counselors, prenatal screeners, and even biology teachers, many of whom have embraced certain cultural assumptions about children with special needs. They are viewed not as gifts but as burdens, not children to love but mistakes who should be eliminated, with abortion the most efficient means. That was very rarely the direct message that was sent, but it was the indirect message that was conveyed in a dozen different ways. Becker and her husband, when contemplating having another child, came face to face with a culture that believes children with disabilities are not worth bringing into this world. It’s little wonder that women who receive a prenatal diagnosis of trisomy 21 terminate their pregnancies the vast majority of the time. The Beckers didn’t buy into the cultural presumption that certain children are more worthy of life than others, and now have three children. Only Penny has Down syndrome.
The reason Becker and her husband didn’t embrace the assumptions of our modern culture has to do with viewing life through the lens of their faith. Both were devoted Christians when Penny was born: Peter, even-keeled and optimistic, never really wrestled with theological questions surrounding Down syndrome; he just loved Penny. “Two days after our return from the hospital,” Becker writes, “Peter finished grieving and walked outside and never looked back.” Becker, however, wondered whether God was trustworthy: She argued with Him, struggling to see God’s presence in the midst of raising a Down syndrome child. Yet she never lost her faith, and could never escape it. It was the only lens through which she could interpret the world.
One of Becker’s closest friends, upon learning the news about Penny’s Down syndrome, was upset. But she relayed that when she was praying for Becker, the words of Jesus came to her mind: “Whoever receives this child, receives Me.” At first those words haunted Becker; but over the course of two years, they gradually reassured her. What she learned is that what God values is often profoundly at odds with what we prize. We place tremendous importance on intellect, on outward beauty, on physical excellence. We admire people who can speak well, who dazzle us with their erudition, or their wealth, or their awards. And while those things are not unimportant in and of themselves, Becker discovers that they are not nearly as important as we think.
What Becker also came to understand, amidst the pain and through grace, is that there is purpose in Penny’s life simply as she is and who she is—God’s child, His gift, an instrument of mercy and illumination. Her extra chromosome is not only associated with delays and impairments but also sweetness, joy, wonder, patience, and love.
Shortly after the birth, Becker was speaking with her mother about how she should think about Down syndrome in terms of God. Is it a manifestation of sin in the world? Her mother responds: “The only evidence of sin that I see in Penny’s birth is in how we respond to her.” Becker writes that it was as if she had been looking through a kaleidoscope, and it turned a notch: “All the same pieces and parts, the same colors even, but a totally new pattern. A new way of seeing.”
In the West we have succeeded in domesticating the Jesus of the New Testament. We have fit His ways into our ways, rather than vice versa. And so the person who told us that the last shall be first, that His strength is perfected in weakness, that the poor in spirit are blessed, and that it is the meek who shall inherit the earth, has been housebroken and diluted, made safe and reassuring, a ratifier of our cultural presuppositions and old patterns.
And yet sometimes, if we are lucky, we encounter people in our lives who remind us how fundamentally different truth is from the shadows we take to be real. They might even point out to us, in their particular way, that a God who took on the nature of a servant and became obedient even unto death might also consider a child with Down syndrome to be of inestimable worth.
Peter Wehner is a senior fellow at the Ethics and Public Policy Center.