A striking juxtaposition:
Earlier this year, Ariel and Deborah Levy filed a "wrongful birth" suit against the Portland-based Legacy Health System, citing hospital staff's failure to recognize the chromosomal abnormality indicating that their daughter had Down syndrome. The couple told the court that they would have terminated the pregnancy had they known of her condition, and "worry about who will care for their daughter once they are gone."The jury sided with them in early March, awarding the Levy family a nearly $3 million settlement.
Last week, columnist George Will wrote a moving piece on a topic dear to his heart: Jonathan Frederick Will, his 40-year-old son. Jon, like the Levys' daughter, was born with a chromosomal abnormality, giving his father first-hand experience of the increasingly troubling ways our "enlightened" society views those like his son—true innocents who, in Will's insightful words, "always depend on the kindness of strangers."
A recent viewing of Ocean Heaven (Haiyang tiantang)—the 2010 Hong Kong film that claims to feature the first "full drama role" of legendary action star Jet Li - brought all of these strands together in a new and poignant way for me.
Wang Xingchang (Li), a widowed aquarium worker whose life is dominated by the needs of his severally autistic son, Dafu, is notified that he has terminal cancer. Terrified at the thought of leaving his son lonely and unloved—without a champion—Wang resolves to drown the two of them. "I'd rather take him with me," the despairing father says, "than leave him suffering alone." But his efforts are thwarted by the young man's extraordinary ability in the water, and Wang is forced to resign himself to the inevitable separation. But the question of Dafu's future continues to plague him: "If Dad leaves and you don't come with me, who will take care of you?"
As Wang's condition worsens, he drills Dafu relentlessly on the ordinary tasks that will be vital to his survival, hoping to prepare him for the struggles that lie ahead. Yet as the end approaches, he finds his son capable of far more than he would ever have thought possible, thanks to the extraordinary generosity and kindness of those around him: the local grocer lady who beseeches Wang to let her adopt Dafu when the time comes; the traveling circus clown who befriends the young man and promises to be his companion despite the distance; the aquarium owner and Wang's fellow employees, earnestly striving to lighten their friend's burden by helping in any way possible. They convince Wang that his son will never be alone, and that he will be loved to the end of his days. But the weakening father still faces his greatest challenge: finding the words to tell his beloved son of his impending death.
Wang must face his own powerlessness regarding his son's future, and Ocean Heaven reminds us that a future out of our control is especially fearsome for the parents of a special-needs child; it makes the Levys a bit more comprehensible to those of us who are horrified by their lawsuit. It also reminds us why we must never succumb to such frustration and fear, no matter how understandable it may be.
I have not been called to deal with the effect of chromosomal abnormality in my own immediate family, and so I hesitate to speak with any conviction on matters chock-full of powerful emotions and very real suffering. I have, however, been blessed by the extraordinary witness of several members of my extended family; a pair of my cousins have Down syndrome, and I have had the opportunity to observe them and their caregivers at numerous family reunions and get-togethers throughout the years. Each time, I have been amazed at the disproportionate impact these gentle souls have on those around them—a witness especially powerful when contrasted with society's increased willingness to throw away people deemed deficient, flawed or broken.
As I read George Will's witness to his son's meaningfulness or fret over the Levys' tangled justification for terminating their daughter's life in utero or watch the ailing Wang's realization of his son's irreplaceable value, I am struck by a single theme: we parents must stop fixating on the ways we can (or cannot) control every moment of our kids lives, start recognizing the ways in which they influence ours, instead, especially when they come with challenges. And they all come with challenges, for that matter.
There is a grave danger in seeing ourselves as the final arbiters of another's happiness, worrying that an obstacle they face may prevent them from living an "ordinary" life while failing to recognize the extraordinary gift their presence is to so many.
My cousins bring immeasurable joy and light to their parents, to their families, and to many others who cross their path. Countless autistic, trisomic, and mentally disabled people live meaningful, joyful lives; they remind us that happiness is not health-qualified; that the ability to be a vital, transformative member of human society is not something that is won (or lost) on the basis of our chromosomes.
These gentle souls often see the world with an otherworldly clarity, and pass its beauty on to the distracted and obsessive rest of us. Despite the undeniable trials and challenges that face those who care for them, these "throw-away-people" are uniquely suited to bringing out the best in humanity.
Truly, they are blessings in disguise; we forget that we are never as in control as we want to think we are. The One who is responsible for the building and the shaping of their bodies is never cheated. He does not deal in "defective parts," but in parts that we able-bodied members are too small-minded, near-sighted to recognize for their true worth.
There are no defective humans—at least not in ways that truly matter. There are only those that we deem defective. And may God forgive us for that.
