After months of heightened heart rate from reading excellent but fantastical political thrillers by Lee Child, Vince Flynn and Don Winslow , I did an about face and picked up Ian Brown’s book about his globally delayed son Walker, just to take a peek. After all, in this pre-apocalyptic era, why would anyone want to read such a sad story? My peek lasted for 300 pages. Instead of a fast pulse, I developed a sense of privilege for having accompanied Brown if only for a few hours. The book is a ferocious example of why we read. As the Dali Lama might say, it is a heart opener.
Walker was born with a rare genetic mutation, cardiofaciocutaneous syndrome. These words mean absolutely nothing to most of us, but if you are Joanna Schneller or Ian Brown, they mean that your child cannot speak, cannot eat solid food by mouth and has to be fed intravenously. Walker has many other symptoms – head banging and self mutilation, a compromised immune system which sends him to the doctor’s at least twice a week, epilepsy and a very unusual face, which causes people to stare. Night after night with Walker, mean wrestling with IV equipment, changing diapers (on a boy not a baby), trying to stop him from constantly smacking himself and very little sleep.
Brown moves, from the details of their physical life together, into the realm of his own yearning to understand the value of his son’s life. “Sometimes watching Walker is like looking at the moon: You see the face of the man in the moon, yet you know there’s actually no man there.” “All I want to know is what goes on inside his off-shaped head, in his jumped-up heart.” His search leads him to many discussions with geneticists and experts. These are very dispiriting. He then contacts a few of the handful of families who live with their CFS children. Brown has his heart opened as he experiences for the first time children who look like Walker. He learns how to be with them.
Over the years Joanna and Ian, often on the verge of collapse, struggle with whether or not to find another home for Walker. The paragon of homes for the disabled is L’Arche community, started by Jean Vanier. Opposed to integration, Vanier believes that the disabled should live in their own community with committed assistants who will help them create their own home. While this is controversial, Brown navigates all of the ethical dilemmas of living with his little guy, with such desire and honesty that all you can say is “thank you.” He says often throughout the book that living with Walker has made him a better person. This book is filled with grace.