The Witness of His Obedience and Love
Sometimes the world needs a bit of silent witness, the kind that isn't found in the ivy leagues or board rooms or fast lanes inhabited by the polished, educated elite. Any of his five sisters or three brothers could have picked up their laundry at my first call, but they didn't, until they were inspired by my son's willingness to act. The witness of his obedience was better understood through the filter of his visible brokenness.
I think back to a quote I read in high school. Though I cannot remember the writer, the line stuck then and resonates now, "A joyful child reminds us of God the Father, and a crippled one, of His Son."
My son is both joyful and handicapped, and so he calls us to love more deeply than we might be inclined to, absent his trials. Perhaps I am too needy of the reminder, but I recently looked at the gospel and read, "No one tears a piece from a new cloak to patch an old one. Otherwise he will tear the cloak. Likewise, no one pours new wine into old wineskins. Otherwise the new wine will burst the skins and it will be spilled and the skins will be ruined. Rather, new wine must be poured into fresh wineskins. And no one who has been drinking old wine desires new, for he says, 'The old is good'" (Lk. 5:36-39).
Curing Down Syndrome would mean rewriting who my son is on a genetic level, putting a new patch on an old skin. This is not like fixing a broken arm or laser surgery to restore an eye to its more youthful capacity. This is tinkering with how he understands and relates to the world—possibly with who he is. Could it possibly cause the skin to burst and the wine to be spilled? How do I reconcile knowing that he is "wonderfully and fearfully made" with going in and reworking my son's DNA?
One of the gifts of having a child with special needs is how living with such a person requires greater mindfulness. Medical ethics demand that we always consider the consequences before we render the cure. Afterward, there will be too much excitement; people may not have the capacity to reflect on what having this sort of power might mean, both to those affected and those who do not undergo the treatment, who do not get "fixed."
People of faith do well to pray and consider over a right course that rejects neither faith nor reason, neither the goods that might come from such breakthroughs in research, nor the persons who were infinitely wondrous, wonderful, and worthy before any possibilities existed. Are we reworking people into our own image because we do not recognize those gifts that are not easily identifiable through standardized tests? At what point, does the manipulation of a child's natural capacity become something beyond a cure?
My reservations are not limited to questions about what happens when we begin to engineer a physically flawless race of human beings; they are not grounded in a fear of technology or change, or even to an overly sentimental attachment to my son because he is disabled. I am concerned because the world is becoming increasingly blind to the ordinary beauty of humanity with, and in spite of, all its flaws. Society prefers an airbrushed virtual version of people, one that can be tweaked to fit the image of the age. If science advances to the point where all the struggles of parenting and childhood and this business of living can be "cured" with a pill or a shot, then what is the purpose?
That which comes easy, we do not value; that which can be fixed, we need not invest time in to improve. The human heart has shown itself over the centuries to be highly intolerant of the"other," any "other," even the ultimate "other," God, who gifted us with his son to tell us all that "we were made in God's image. Your sins and sufferings are known, yet you are loved, always." If we create ways to eliminate anyone from being "other," how will our hearts be stretched to love as God loves?
These may be just a mother's overwrought worries, and they may subside in anticipation of the day her son can read to her and pour his own juice. If a "cure" is found, more children with my son's condition may survive the rubicon of the womb, despite their diagnosis.
But if this is to be a wondrous brave new world that has such people in it, we ought to begin thinking and remembering what instructive witness our children with Down syndrome did bring to the world, before they were cured.
Sherry Antonetti is a freelance magazine writer and columnist, and a contributor to Catholic Digest. Her novel, The Book of Helen, is historical fiction available through Museitup Publishing, and for all kinds, and e-readers. Sherry is the proud mother of six daughters and four sons. She blogs at Chocolate for your Brain.