The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son [Hardcover]

Ian Brown (Author)

Book Description

Release 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.

Editorial Reviews

Review

"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

About the Author

IAN BROWN is an author and a feature writer for The Globe and Mail. The Boy in the Moon has won three of Canada’s most prestigious literary awards: the Charles Taylor Prize, the Trillium Book Award, and the British Columbia National Book Award for Nonfiction.

See all Editorial Reviews

Product Details

• Hardcover: 304 pages
• Publisher: St. Martin's Press; First Edition edition (April 26, 2011)
• Language: English
• ISBN-10: 0312671830
• ISBN-13: 978-0312671839
• Product Dimensions: 8.5 x 5.6 x 1 inches
• Shipping Weight: 13.6 ounces (View shipping rates and policies)
• Average Customer Review: 4.5 out of 5 stars  See all reviews (35 customer reviews)
• Amazon Best Sellers Rank: #500,665 in Books (See Top 100 in Books)

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Most Helpful Customer Reviews

38 of 38 people found the following review helpful

5.0 out of 5 stars On a par with Born on a Blue Day April 5, 2011

By J. Murray VINE™ VOICE

Format:Hardcover|Amazon Vine™ Review (What's this?)

Ian Brown's memoir, The Boy in the Moon (St. Martin's Press 2011), is an eye-opening trip into parenting a special needs child. In this case, Ian Brown and his wife have a severely disabled child with an orphan disease (one which is not studied or researched much), making both diagnosing and dealing with the disease difficult. This particular disease, CFC (cardiofaciocutaneous disease) is extremely rare, gets worse as the child matures and can't be cured. The story deals primarily with the Dad's struggle to come to terms with his son's life as a CFC sufferer.

Ian Brown didn't ask to parent a disabled child--no one does--but once there, he accepts the job with vigor, grace and resolve. I am constantly impressed with his patience toward his son Walker, his resiliency in the face of one disaster after another and his hope that there will be a better life for his son (and he admits, for himself and his wife. No surprise, they struggle to maintain a strong marriage when the fulcrum of their marriage becomes their son). Through Ian, we all gain courage to accept that job, should we ever be in his shoes. He starts the journey full of hope that his child will be 'fixed', tries every cure, never shies away from any effort that could result in 'normalcy' for his son. In the end, he achieves his goal, but it's not what he expected. Rather than changing his child to fit into the world as 99.9% of people understand it, he changes to accept Walker as a full, complete, wonderful boy in a world that shouldn't consider him disabled just because he is the minority.

The first third of the book deals with Walker's life as seen through the eyes of his parents--his birth, his maturation, their efforts to squeeze their square peg boy into the round hole that is a normal Canadian child. When Walker finally moves into a group home more suited to his needs, the last two-thirds of the book deal with his father's efforts to understand his boy, not as Walker isn't but as he is.

Walker's disability is the result of a crippling genetic disease that leaves him unable to talk, care for himself, react socially. In a measure of full disclosure, I'll share that I am the parent of a child with a rare disease, though in her case, not as life-changing as Walker's. With each chapter, I compared Ian Brown's story, his thoughts, his considerations to myself which--I admit--likely shaped my attachment to this book. Not only do we the reader see Walker growing up, but we see his father growing up. We share his resolve to take care of his son at home, the sorrow that he can't continue do that and then his efforts to understand his son's disability. It's no surprise that it changes his life from a simple journalist to an impassioned advocate of the disabled. His search to understand CFC morphed from a practical need to make his son's life more normal to a cerebral hunger to assure himself that his son was happy and fulfilled despite the unusual life he must lead. Along the way, Brown delves into how parents handle CFC (or any disabled ) children. Do they feel like failures because they can't fix their children? Do they ever accept that abnormal isn't sub-normal? How can a marriage survive?

My only confusion in the book was the temporal arrangement of the story. In the first third, there was no confusion moving through Walker's life from dependency to a measure of dignified independence. The issue came when Ian matured into understanding his son's disability. To show his own growth, the author jumped around in Walker's life, sharing examples from different points in the boy's existence. I found that difficult to follow until I fully realized that this is the story of the dad's growth, not the son's.

I also had one question remaining when I turned the last page: How did the sister survive in this Walker-centric world? I will have to Google her.

Here are some of my favorite parts:

* Raising Walker was like raising a question mark
* Olga had no special qualifications to look after a boy as complex as Walker
* This is one unusual thing about having a boy like Walker: he has his own life, his own secret world...
* The boy recalibrates the world.
* Returning home again was like entering a long hallway where the lights wouldn't go on.
* What I cared about was whether he had a sense of himself, an inner life. Sometimes it seemed like the most urgent question of all.
* ...the first time someone suggested Walker had a gift the rest of us didn't.
* I felt like I'd barged into a church as a naked one-man band with a Roman candle up my a** and singing, "Yes! We Have No Bananas."
* Walker is an experiment in human life lived in the rare atmosphere of the continuous present.
* Gratitude springs out of me like crabgrass out of a lawn.

...and that's only half way through. You won't be sorry you read this book.

9 of 9 people found the following review helpful

5.0 out of 5 stars Love is both essential and sufficient. May 13, 2011

By Trudie Barreras VINE™ VOICE

Format:Hardcover|Amazon Vine™ Review (What's this?)

This book is powerful in so many ways that I really don't know where to start. I could go on for pages discussing all the things I find important about it, but I believe that is far beyond the scope of a review by a non-expert, and think that in this case, "less is more". Therefore I will limit myself to a few observations.

For me, the most important thing about the story of Walker Brown and his family is that it builds a stunning case for the premise that, in an unforgettable quote that I first encountered in the play J.B.: "To be human is to love, and to love is to suffer." Throughout the book, as Ian strives to communicate with Walker, to deal with the extreme deficits in development and the pain and trauma these produce, he keeps encountering over and over again the reality of Walker's humanity and his own in the love and suffering they share.

Another great gift I found in this book is Brown's unyielding search for a community of caring for Walker, which included experiencing the L'Arche communities. I have long been interested in these communities, and in fact have read much of the work of Henri Nouwen. Indeed, about halfway through Brown's story, before I actually came to the part where he does describe these encounters, I began to wonder, "Has he heard of L'Arche?" I was delighted to find that this was an important part of his own pilgrimage, and his response verified much of what I already understood from my previous reading.

Also rewarding to me is the fact that Brown has reached his level of insight without the benefit of any strong religious faith, and without resorting to religious platitudes. However, the core belief that human life - ALL human life - is uniquely valuable is intrinsic to the spirituality that underlies religion. I find his concluding summation in the last paragraph of this book totally meaningful and extremely beautiful:

"I held him in my arms as quietly as I could, and I thought: this is what it will be like if he dies. It will be like this. There was nothing much to do. I didn't fear it. I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success, only what he was, a swooned boy, my silent sometimes laughing companion, and my son. I knew I loved him, and I knew he knew it. I held that sweetness in my arms, and waited for whatever was going to happen next. We did that together."

Throughout the book, this message glows more and more brightly: the truly deprived and deficient human life is not the one which lacks various capabilities which we have come to value and reward - especially in a material sense - but the one which lacks the ability to love and be loved unconditionally. Ian Brown teaches us to look beyond the superficial, as Walker has indeed taught him. May his book share this profound and much-needed message very widely indeed!

7 of 7 people found the following review helpful

5.0 out of 5 stars Will long stay with me June 4, 2011

By Robin Wolaner

Format:Hardcover|Amazon Verified Purchase

I met Ian Brown decades ago, although we are not in touch, which is why I noticed this book when it was published in Canada. I didn't read it, though, until after the rave review in the NY TImes, and I am so glad I did.

I used to think of parents with disabled children as heroic -- used to wonder if I could be as heroic as they if I were not blessed with healthy children. Having read The Boy in the Moon, I see their lives differently. The children are the heroes, and while I would not call a parent blessed to have their life so rearranged, I understand the use of that term now. This book is fascinating, inspiring, and moving. The philosophical aspects are not the kind of writing I generally read -- but made me think, and learn.

If anyone called this book depressing, they must have read a different book. I feel lucky to have discovered it, and enriched. That is Walker's gift, and our luck that his father's gift is writing, as well as parenting.