The hardest part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his – a life lived in the twilight, and often in pain? What is the cost of his life to those around him? “We spend a million dollars to save them,” a doctor said to me not long ago. “But then when they’re discharged, we ignore them.” We were sitting in her office, and she was crying. When I asked her why, she said “Because I see it all the time.” – from The Boy in the Moon –
Ian Brown and his wife welcomed their son, Walker, into the world in 1996 – and immediately they recognized there was something wrong. Walker’s disabilities showed themselves early with bouts of unrelenting crying, an inability to eat, and a failure to thrive. But it took a long time to find a diagnosis for their boy. Eventually they would have an answer – a genetic disorder called cardiofaciocutaneious (CFC) syndrome, a rare affliction that strikes fewer than 300 children worldwide and marks them with unusual facial appearances, communication deficits, and severe developmental delays and mental retardation. In Walker’s case, the disorder also made him act out with self-injurious behaviors (SIB). For the Browns, who already had a typically developing daughter, Walker was a mystery…and he turned their world upside down.
The Boy in the Moon is Ian Brown’s memoir of the first thirteen years of their son’s life. Brown recounts the sleepless nights, the sadness, and the strain on his marriage because of Walker – but, he also shares the deep and dedicated love he has for his son, the moments when Walker filled his life with awe or taught Brown something about himself.
Sometimes I think this is his gift to me – parceled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy. – from The Boy in the Moon –
Walker wasn’t much to brag about, intellectually or physically. But like many other CFC children, he had changed lives, mine as much as anyone’s – deepened and broadened me, made me more tolerant and durable, more ethically dependable. He had given me a longer view. – from The Boy in the Moon –
Brown is nothing if not brutally honest in his memoir. He does not pretend that he is a saint, or that his love for his child is not filled with ambivalence. He lays it all out and bares his emotions on the page. As difficult as his story is to read, I still found myself laughing at times…because Brown has discovered something that many people have not – that humor can elevate us above the worst situations and make our most difficult challenges bearable.
I dreaded the doctor’s waiting room, with its well-dressed mothers and well-behaved children. They were never anything but kind, but walking in with Walker yowling and banging his head, I felt like I’d barged into a church as a naked one-man band with a Roman candle up my ass and singing “Yes! We Have No Bananas.” – from The Boy in the Moon –
Brown’s memoir is not just about Walker…it is about all families raising children with severe disability. In the years after Walker’s birth, Brown began to ask himself: What is the value of one human life? He wanted to find meaning in Walker’s existence. His journey took him around the world, seeking out other families with children diagnosed with CFC. He also met with individuals whose progressive view of the disabled was opening doors to communities where the disabled could be accepted for who they were, and treated as equal and important members of society.
In Brown’s memoir, the reader is introduced to extraordinary people – the nanny, Olga, whose love and patience with Walker was a gift; the day workers and night workers at the group home where Walker is eventually placed who adopted him into their hearts; and the parents of other CFC children who had sacrificed everything for their children. Along the way, Brown challenges government bureaucracy and the overwhelming medical establishment in his effort to make sense of the world and Walker’s place within it.
The gift that Brown gives his readers is a glimpse into the despair, hope, and eventual acceptance which parents raising children with disability face every day. He reveals the boy beneath the diagnosis and offers a deeper understanding of what it means to be human.
Because on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy; an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted. – from The Boy in the Moon –
I was deeply moved by the story of Walker. Brown’s writing is flawless, honest, heartbreaking, and wise. I have worked as a physical therapist with adults with severe developmental delay for nearly ten years now, and so much of what Brown says in this book resonated with me. He puts into words what I have long felt in my heart.
The Boy in the Moon should be mandatory reading for everyone. It is easy to cast our eyes away from those who are struggling; it is easy to forget about the children and adults living with disability behind the closed doors of their group homes. But, we do ourselves a disservice by not taking notice – somehow we become more human when we allow ourselves to be touched by the lives of people like Walker.
Profoundly moving, The Boy in the Moon is a book I highly recommend.
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FTC Disclosure: My thanks to the publisher for sending me a copy of this book for review on my blog.