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Product Description
Quill & Quire
They are father and son. They communicate in a private language composed entirely of clicking noises. The parent is veteran Globe and Mail feature writer Ian Brown; the child, his young boy Walker, whose abilities are almost unimaginably impaired because of a rare genetic mutation. In a humble and flawless new memoir, The Boy in the Moon (based on a series of articles that originally ran in the Globe), Brown recounts his journey to try to understand his son, who by the age of 13 had the mental capabilities of a three-year-old. As one of only about 300 people on the planet with cardiofaciocutaneous syndrome (CFC), Walker has an unusual facial appearance, no ability to speak, and a compulsion to punch himself in the face until he screams in pain. Extensive effort is required to feed him, change his diapers, or remove the growing boy from his crib. With the help of a superhuman nanny, and while working full-time, the Browns raise Walker themselves for the first eight years of his life, before finally placing him in a group home with full-time nursing staff. How can one comprehend a life such as Walker’s? To answer that question, Brown traverses the continent and scours the Internet to uncover a disabled diaspora consisting of families of CFC kids. Despite the random origins of the condition, a consistent theme among affected parents is self-blame. But another is the enhanced sense of empathy and patience wrought by their intense care-giving experiences. Hauntingly, the biggest worry is most often, who will take care of our child when we eventually die? The author, a confirmed atheist, finds one answer at L’Arche, an international network of faith-based communities centered on adults with developmental disabilities. Throughout the book, Brown’s prose is honest, self-critical, poetic, and moving. While offering a broader philosophical critique of society’s conception of disabled people, The Boy in the Moon is ultimately a painful yet joyous account of an evolving relationship of mutual love and dependency. As he lets go of the notion of his boy as “unfixable,” Brown is able to calm his own self-doubt and accept Walker exactly as he is. In tandem, neither of them is broken.
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Most helpful customer reviews
9 of 9 people found the following review helpful:
5.0 out of 5 stars
excellent book,
By Emmaursula (Small town BC) - See all my reviews
This review is from: The Boy in the Moon: A Father's Search for His Disabled Son (Hardcover)
Well written, a page-turner. Ian Brown covers so many things with this book - ethics, our humanity, L'Arche, finances, genetics, research, exhaustion and more all while telling the story of caring for his son. It's not sentimental. It is honest. This is a very good book.
7 of 8 people found the following review helpful:
5.0 out of 5 stars
A sentimental Journey,
By
This review is from: The Boy in the Moon: A Father's Search for His Disabled Son (Hardcover)
I read Globe and Mail series and was riveted by Ian Brown's story. This book takes you through the ups and downs of raising a child with a disability and gives you a glimpse into their lives.
I loved it.
4 of 4 people found the following review helpful:
5.0 out of 5 stars
Required Reading for Understanding Special Needs,
By
This review is from: The Boy in the Moon: A Father's Search for His Disabled Son (Hardcover)
Brown's book should be required reading for anyone who works with families of children with special needs. It is both insightful and masterfully written.
Ian Brown has bravely opened his soul to us -- thereby enabling people who otherwise have not lived the experience of having a child such as Walker, the much needed lessons of what that journey is truly like. I do have such a child, and I appreciate the clarity with which Brown has managed to encapsulate all of the emotional, psychological, and physical aspects that are part and parcel of such a life. My thanks to Ian for having the courage to see this through to completion, and a willingness to share such intimate and often painful experiences with the world.
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