The Boy in the Moon
A Father's Journey to Understand His Extraordinary Son
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3.7 • 91 Ratings
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- $11.99
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- $11.99
Publisher Description
A New York Times Top 10 Book of 2011
"[A]n intimate glimpse into the life of a family that cares around the clock for a disabled child, that gets so close to the love and despair, and the complex questions the life of such a child raises...It is a beautiful book, heartfelt and profound, warm and wise."
—Jane Bernstein, author of Loving Rachel and Rachel in the World
Ian Brown's son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life.
Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker's doctors can't answer. In his journey, he offers an insightful critique of society's assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is.
Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.
PUBLISHERS WEEKLY
Canadian writer Brown presents a moving and deeply felt account of his life with his son Walker, who is one of fewer than 300 people in the world who were born with CFC, cardiofaciocutaneous syndrome, an extremely rare genetic mutation that didn't even have a name until 1986. Brown is uncompromising in his description of his son's condition which includes mental and physical disabilities such as seizures, severe facial irregularities, an inability to speak, and a compulsion to hit himself as well as the impact that raising him has had on Brown, his wife, and their daughter: "the years of desperate worry and illness and chronic sleep deprivation... threatening our marriage and our finances and our sanity." But Brown spends an even greater amount of time sensitively describing the many joyous moments that reveal to him how "Walker is an experiment in human life lived in the rare atmosphere of the continuous present." And the second half of the book describes Brown's fascinating worldwide investigations into the various living situations offered to people with CFC as well as his visits with other families whose children have CFC.
