Photo by Rita Bourland - 2011
Changed by The Boy in the Moon
I just finished reading The Boy in the Moon by Ian Brown and have tears in my eyes as I begin to write. I was deeply touched by this book and felt compelled to share my experience.
The book was a Christmas gift from one of my sons. He noticed I was nearing completion a few days ago and asked if I thought it was worthy of being among the New York Times Ten Best Books of 2011. I paused before answering him because I was a bit conflicted. The book was tough to read.
Ian Brown writes about his son, Walker, who was born with CFC, a rare genetic mutation that only about 100 people in the world share. This mutation results in severe developmental disabilities. Walker has chronic health issues and physical problems that include hitting himself repeatedly in the head. He’s also prone to fits of laughter, moaning and crying. He can walk but is unable to talk. He is fed through a tube in his stomach. He wears diapers. At times he relaxes enough to be held and hugged.
I lived with the Brown family through the pages of this book. I went along with the father and mother as they sought out specialists, looked for a group home, cried for their broken son, suffered from ongoing guilt, exhaustion, anger and despair. But they always held onto a deep abiding love for Walker.
The reason I needed to write about this book came to light in a few instances this week.
Our newspaper ran a story about a local center for the developmentally disabled. Fifteen staff members were going to lose their jobs and the center was soon to be closed because of a lack of state funding. I read the newspaper story and felt a tight grip in my chest. Two weeks ago, before I read the book, I would have skipped past the story without considering the serious implications.
I went to church on Sunday. As I was leaving I saw a couple, probably in their mid-40s, open the back of their van and push a button to lower a wheelchair to the ground. They opened the side door and lifted their son into his chair. Two weeks ago, before I read the book, I would have cared about this family but I wouldn't have fully understood the complicated, extraordinary measures necessary to participate in normal community activities.
On the radio today, there was a program about how people use humor to get through challenging times. A man called in and shared a story about how his son keeps him laughing by playing practical jokes. He said his son is 41 years old and has Downs Syndrome. They will live together forever. The father’s love for his son was palpable. Two weeks ago, before I read the book, I would have been touched by this story, but today I listened with news ears.
That is what a great book does. It helps us see with new eyes, hear with new ears and feel with new depth. So, yes, this book deserves to be on the top ten list. I feel expanded, curious and changed as I consider the things that make us human, unique, important and valued.
Ian Brown has a quote about his son that I will carry with me, “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.”
I was persuaded to look inside my own and that is the reason I'm sharing this with you today.
Photo by Rita Bourland - 2011