In his affecting new book, Globe and Mail journalist Ian Brown sets himself the awesome task of measuring the value of human life—specifically that of his profoundly disabled thirteen-year-old son, Walker. The boy was born with a genetic mutation called cardiofaciocutaneous syndrome, referred to by experts as an “orphan syndrome” because its occurrence is so random and rare. Walker is small—he weighs just sixty-five pounds—and globally delayed. He can’t feed himself, he barely communicates, and he functions at the level of a two-year-old.

There are no ribbon campaigns or telethons for sufferers of CFC and very little medical knowledge about the condition; it’s only since the arrival of the Internet that a small support network of families has coalesced. Brown and his wife, journalist Johanna Schneller, muddle through—epically sleep deprived and battle scarred from Walker’s vicious tantrums—with the help of a miracle-worker nanny and a series of doctors, therapists, and support caregivers, none of whom offer much hope that their son’s situation will ever improve.

Brown expanded the story from a series of articles first published in the Globe. Even with the most intimate material, he maintains his reporter’s discipline and impartiality, a rigour that makes the storytelling still more intimate. His accounts of his attempts to connect with Walker, and to be a good father, are at once tender and resolutely unsentimental. “Walker had given my life shape, possibly
even meaning,” he writes. “But Walker had also made our lives hell.”

The boy’s needs strain Brown’s finances and his marriage. (“The grit of resentment lay like a fine dust over everything,” he writes of his relationship with Schneller.) And in the zero-sum game of contemporary child rearing, he is beset by guilt for not being enough of a “disability warrior” for his son, and by fears
that other parents view him as a failure.

Yet raising Walker also offers Brown extraordinary moments of grace: the visceral pleasure of sharing a bath or holding hands; the wisdom of a kind-hearted doctor who likens Walker’s condition to the Buddhist idea of “pure being”; and the heartbreaking decency of friends who “tried to reach down into our darkness and hold us.”

Given the current glut of smug daddy blogs and cutesy mommy memoirs, it’s bracing to read a story about parenthood in which there is something so extraordinary at stake. Here, Brown and Schneller grapple with whether to place Walker in a group home. It feels like a betrayal to send him away, but the level of care he requires is simply too much for them to manage. To sort out his feelings, Brown embarks on a journey to meet other families of children with CFC—a narrative device that at times feels forced. And after a visit to a Christian community of disabled people in France, he finds something like peace. It doesn’t come from the group’s beliefs, which he respects but does not share. Rather, it lies in himself: “I have begun simply to love [Walker] as he is, because I’ve discovered I can.”