Thursday, April 19, 2012

"The boy in the moon: a father's search for his disabled son" - Ian Brown

A parent’s one wish is to understand their children, to know their world and be a part of it, all while teaching, learning and growing as a family. Often for many parents this is a “brady bunch” reality, a pipe dream, but to share in a child’s life for one precious moment, to have a language of love that only the two of you understand epitomises the parent child relationship. In this book, Brown takes this journey to find a relationship with his son Walker. Often a book in itself, or a song like Cat’s in the cradle, The father-son relationship is a unique thing.

However life is rarely a perfect road, and at birth, Walker is shown to have a genetic disorder later diagnosed as cardiofaciocutaneous syndrome or CFC.

Brown and his family are Canadian and with that presents the book in the typical Canadian style, dark and witty, but full of emotion and thought provoking. The book describes the medical condition in a non-text book manner and chronicles Brown's search for others with the syndrome and describes his journey to find a governmental disability advocate to advise his small family in finding their way through the masses of bureaucratic red tape.

Brown is strong and succinct in his descriptions of Walker, describing him once with the following characteristics

“He has the body of an old boxer: square, really, like a shirt box on end. His arm cans – rigid fabric tubes that prevent him from bending his elbows, so he can’t deliver smashing upper cuts to his skull all day long – prevent him from developing big biceps, but he has tough lumps of muscle on his forearms. His face is heavy in the lower jaw, full in the cheeks: he has no chin to speak of. Curly hair, but no eyebrows, where he’s bald as a spaceman. A wide nose, characteristic of this syndrome (and of many others, too). Thick lips, especially the lower one, ‘patulous,’ the doctors called it, back when he was still a novelty. Square teeth, yellowed from the formula, but undecayed. Hands like gloves, huge for his size.”

Normally in a memoir you would expect lots of candid family photos and happy snaps of discoveries, yet this is something that lacks in this book. According to Brown, many of Walker’s photos were stiff and ugly and not capturing the essence of his unique boy.

The story weaves through marital stress, worries over Walker's older sister leading a normal life, Brown's single minded determination to find a future home for his son and his ability to lead a good life. Brown travels the world speaking to other families of CFC children and meets many disabled advocates along the way.

This book will have you thinking about the evolution of genetics, modern medicine and governmental policy. It will open your eyes to another world. While not a light read, it's definitely worth the effort.

Reviewed by hannah.

No comments:

Post a Comment