The purpose of intellectually disabled people might be to free us from the stark emptiness of the survival of the fittest.” - Ian Brown, in The Boy in the Moon (Vintage Canada, 2009)
I’ll let you draw your own conclusions as to why I just finished reading a book I received for Christmas in 2009. Slow reader? Too many thrillers on the market? Just completed the Fifty Shades of Grey trilogy as part of some cutting-edge theological research?
Actually, my delay in getting to this monumental work was carefully calculated. I wanted to savour it with the attendant careful thought Ian Brown’s writing consistently elicits and deserves. I’m not disappointed whatsoever that I chose such an approach.
In The Boy in the Moon, Brown, a feature writer for The Globe and Mail whose work unfailingly wins international applause, relates the tempestuous assignment he and his wife engaged in June 1996 following the birth of their son, Walker. “He was born with an impossibly rare genetic mutation, cardiofaciocutaneous syndrome, a technical term for a mash of symptoms. He is globally delayed and can’t speak, so I never know what’s wrong. No one does. There are just over a hundred people with CFC around the world. The disorder turns up randomly, a misfire that has no certain cause or roots; doctors call it an orphan syndrome because it seems to come from nowhere.”
At the risk of dreadfully oversimplifying the chaotic upheaval Walker’s arrival brought into their world and that of their older daughter, I’ll simply refer to tubes, suction machines, pre-digested pabulum, fits of crying lasting hours, a permanent valve/G-tube in his abdomen, feverishly beating himself on the head with his arms, seldom sleeping more than two or three hours at a time, baffled medical experts, geneticists without answers, massive medical bills. Over 10 years of total – get that, total care – prior to finally finding a home for the disabled that was willing to take their unique child.
I found it impossible to read Brown’s heart-rending account without thinking of parishioners and friends I’ve known who have walked similar, rocky paths of inevitable bewilderment and obligatory loneliness. Families named Congo, McManus, Leno, Rowson, Kazakoff, came to mind, among others. Given the medical world’s woeful ignorance regarding Walker’s condition, the disagreements among experts as to the precise identity of his disability, and Ian Brown’s carefully-considered agnosticism, one of the contemplations that regularly needled my thoughts as I read was how difficult it must be for people of faith called upon to journey through such interminable valleys of despair.
One of the things I detest most in religious circles is the ill-considered, if well-meaning, flippancy with which some dispense scripture verses, pat-answers and formulaic theological riddles to those involuntarily enrolled in the school of unending and unanswered questions. I’ve long been wary and weary of idealistic pro-lifers too often woefully ignorant of and experientially removed from the fine-print of complex realities such as that documented by Ian Brown.
That being said, by the time I’d completed Brown’s work, I found myself marvelling again that Christ-followers such as those named above and thousands like them not only survive such trials with faith intact but actually emerge with a faith I find enviable.
Their stories may never win The Charles Taylor Prize for Literary Non-Fiction such as Ian Brown’s did. But their witness to the sufficiency of God’s grace is equally admirable - jaw-dropping, really.
Today, I applaud such legacies of persistent faith. You, my friends, are truly giants among us.
Tim Callaway is pastor of Faith Community Baptist Church in Airdrie. He can be reached at [email protected]
