The Boy in the Moon
The Boy in the Moon
A Father's Journey to Understand His Extraordinary Son
By Ian Brown
St. Martin's Press, Hardcover, 9780312671839, 304pp.
Publication Date: April 26, 2011
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.
"A father’s candid, heart-wrenching account of raising, loving and trying to connect with and gain insight into his severely disabled son...Much more than a moving journal of life with a disabled child; it is about Brown’s quest to understand his son and his son’s condition...An absorbing, revealing work of startling frankness."--Kirkus Reviews “The truth Brown learns from his severely disabled child is a rare one: The life that seems to destroy you is the one you long to embrace.”--New York Times Book Review
"Unforgettable...Crisp, observant and, occasionally, subversively funny...In the end, as in the beginning, Brown questions the value of a life like Walker's, "lived in the twilight and often in pain." He sometimes locates it in Walker himself. Another answer is this book."--Cleveland Plain Dealer
"Honest and deeply moving."--Tucson Citizen
Ian Brown's son Walker has a rare disorder that left him with severe cognitive, developmental and physical disabilities. Brown's new memoir, The Boy in the Moon, is about his journey trying to answer medical and philosophical questions about his son's existence. More at NPR.org
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