The Boy in the Moon
Walker Brown was born with a genetic mutation so rare that doctors call it an orphan syndrome: perhaps 300 people around the world live with it. Walker turns twelve in 2008, but he weighs only 54 pounds, is still in diapers, can't speak and needs to wear special cuffs on his arms so that he can't continually hit himself. "Sometimes watching him," Brown writes, "is like looking at the man in the moon — but you know there is actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me?"
In a book that owes its beginnings to Brown's original Globe and Mail series, he sets out to answer that question, a journey that takes him into deeply touching and troubling territory. "All I really want to know is what goes on inside his off-shaped head," he writes, "But every time I ask, he somehow persuades me to look into my own." (From Vintage Canada)
Because of his syndrome, he can't eat solid food by mouth, or swallow easily. Because he can't eat, he takes in formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine — one thing, at least, is easy, under my control.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag. Close the mickey, rezip the sleeper. Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own.
From The Boy in the Moon by Ian Brown ©2009. Published by Vintage Canada.