Photo: Vintage Canada
When Ian Brown wrote his memoir, The Boy in the Moon: A Father?s Search for His Disabled Son, his son Walker could not speak or eat solid food. At the age of 12, he weighed only 54 pounds, was in need of diapers and had to wear cuffs on his arms to prevent him from harming himself. Brown’s son was born with cardiofaciocutaneous (CFC), a rare disease that fewer than 300 people in the world live with. Brown’s book, which was released seven years ago, was described by Quill and Quire as “honest, self-critical, poetic and moving.” The story made both the Globe and Mail and the New York Times Best Books lists, and went on to win the Charles Taylor prize for literary non-fiction and the Trillium Book Award. Today, Walker is 20 years old. Residing in an assisted living home, with scheduled visits to his parents’ place, he is still able to both confound and inspire his family. As his father says, “his awareness of the world is a little more noticeable,” and he’s revealing a “slightly more distinctive personality.”
It is in the small moments, like the one that occurred during a family visit, that offer glimpses of this emerging character. Brown relays the story of when Walker, while at his parents’ home, tripped over a bag his mother, Johanna, had left out and scraped his knee. For hours after the fall, anytime Walker saw his mother, he would grunt at her. It wasn’t until f...