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

3.83 of 5 stars 3.83  ·  rating details  ·  1,024 ratings  ·  198 reviews
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 f...more
Hardcover, 304 pages
Published April 26th 2011 by St. Martin's Press (first published April 28th 2009)
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Judy
Many years ago, Dear Abby published an essay in her column called "Welcome To Holland," about how having a handicapped child is like planning a trip to Rome but ending up in Holland. It's not what you were expecting, and at first you're really disappointed, but then you find out Holland is nice. You like it there, it's better than Rome.

In Ian Brown's case, when his son Walker was born with a rare genetic condition called cardiofaciocutaneous (CFC) syndrome, it was "Welcome To Hell." Walker will...more
Judith
I picked up this book from the library display. This is a beautifully written memoir by a father of a son with a genetic disease (CFC). It covers the experiences, the challenges, the joy, the science, the disability policies, the spiritual aspects, the moral implications (and lack thereof of all of the above). Unless you experience it yourself, you can't begin to imagine the hardship, and how much things are slowly changing, in the disabled community. Of course most of us would not want to exper...more
Sylvester
I highly recommend this book. Ian Brown writes so well that I forgot about the writing. This is a book about his handicapped son Walker. Again, Brown's writing skill is such that he could bring the reader up close, right into his nightly routine with his son, and then throughout the rest of the book explore every angle of the question of his son's life - genetics, medical support, schooling, therapies, the extreme pressures of caring for a handicapped child, the guilt of realizing it has become...more
Jennifer D
Following, a review by Rachel Giese, from The Walrus, which sums up my thoughts and feelings far better than I could express.

"In his affecting new book, Globe and Mail journalist Ian Brown sets himself the awesome task of measuring the value of human life—specifically that of his profoundly disabled thirteen-year-old son, Walker. The boy was born with a genetic mutation called cardiofaciocutaneous syndrome, referred to by experts as an “orphan syndrome” because its occurrence is so random and ra...more
Anne
A beautiful, heart-wrenching book -- really something special. Ian Brown is a Canadian journalist whose son, Walker, was born with an incredibly rare genetic mutation that left him severely physically and cognitively disabled; in this memoir Brown describes life with Walker (difficult, stressful, exhausting, joyful), researches the science behind the disorder (don't worry, nothing too technical, and easily digestible), and discusses society's attitudes toward the profoundly disabled -- including...more
Ernie
A writer describes the effects on his family and life when he and his wife have a child with a rare genetic disorder, cardiofaciocutaneous syndrome (CFC). The condition is so rare that only tens of individuals are known with the disorder in the 90s. HIs son is profoundly developmentally retarded. No speech. Cognition not expected to advance beyond the comparative age of 2 or 3. The physicians have difficulty diagnosising it. Since it is so rare, predictions based are effects in others are weak....more
Brian
Parenting, especially parenting well, is the hardest task imaginable; but I've wondered often how parents of disabled children manage the pain, the heartache, the endless work. "Through [the hard work, the smells, the intense emotion, the crises:], you hold your child's body, hold its flesh and heat close to you, like a skin of fire, because our need to make us shamelsess,but touch is our truest hunger. Just hang on. Just hang on. Just hang on. Just hang on." The intense fatigue caused by sleepi...more
Laurie
The boy in the moon is Brown’s son, who has an extremely rare genetic disease that has given him both mental and physical handicaps. CFC- cardiofaciocutaneous- syndrome is not a hereditary disease but one that randomly crops up, so the author and his wife had no inkling that their second child might not be like their first one. Walker cannot speak or even swallow (he is fed through a tube directly into his stomach) or control his bladder or bowels, and requires constant care, which his parents (...more
Nina
During my reading of this quite excellent book, I kept asking my physician husband if he'd ever heard of CFC syndrome, Costello syndrome, Noonan syndrome, and other genetic disorders that are discussed in the book. He had never heard of it. These disorders are that rare--a one in a million misfire of one genetic footprint.
I have a lot of respect for the author, Ian Brown, even though I usually feel people who write books like this are capitalizing on their situation in some way. I think his moti...more
Corri
I considered giving this book a lower rating, then realized that I wasn't seeing the forest for the trees. I was quibbling with the accuracy of some of the medical/genetic information that Brown presented; I had no questions, though, with the depth of thought and feeling and the eloquence in which he conveys them in this memoir about being the father of a profoundly disabled child.

Every special needs child and family has a unique journey. Different family circumstances, different limitations and...more
Ellen Campbell
A beautifully written book by a father searching for meaning, The Boy in the Moon is one of the most lyrical books I have read about the journey to acceptance for a parent of a child with a disability. As a mother of a grown son with an intellectual disability, I know this path and I know this father's urgency as he travels it. Brown's son Walker has cardiofaciocutaneous (CFC) syndrome, a condition so rare that this father literally searches the world over seeking answers to all his questions. I...more
Margaret Depaula
I read an article somewhere (do not remember where) about this book and I wrote the name & author down. I have worked in special education for over 20 years and I have had the pleasure to meet and work with many wonderful children. Some of them were born with very rare syndromes but I had never heard of or worked with a child that was diagnosed with CFC, a syndrome so rare that there are only about 100 living in the entire world. This book is the moving, honest and tender story about a boy n...more
Alison
Parts of this book I really enjoyed and parts I found quite tedious. I liked reading about Walker, his personality, the effect he had on his family, carers and friends, and about other children affected by this rare genetic disorder, but I got a little frustrated with the father's bellyaching about his own personal feelings and "trying to make sense of it all," and "Why me?" I felt a bit sorry for his wife who seemed to just get on with looking after their very disabled son and balancing a deman...more
Mariah
It took me a few chapters to become really invested in this book and the author's chronicle of his emotional journey with his severely disabled son. But on the whole I really loved the book and Ian Brown's honesty--always helps when the author is a journalist. I kept thinking while reading of a Sundance documentary we saw last year about a boy with an unrelated but equally rare genetic disorder (Progeria); it was odd timing because just as I finished the book I saw that the subject of the docume...more
Laurie Carlson
Apr 20, 2011 Laurie Carlson rated it 5 of 5 stars  ·  review of another edition
Recommends it for: everyone
Recommended to Laurie by: Library Thing
The Boy in the Moon, by Ian Brown

As a person with a ‘now’ lifelong neurological disability, I can relate to Ian Brown’s search for his son. My disability is much different than Ian’s, but I can relate to how Ian Brown feels for his son. In my case, my disability changed my life forever in middle life, but I had and lived a full life. For Walker, he never had a chance to experience any part of a normal life, and deep down, it was Ian’s desire to try to draw his life out for him to live a normal l...more
Joan Gilmartin
The theme of this book is good and interesting. The first part of the book, a true story, focuses very much on the daily and regular work involved in looking after this badly disabled boy who suffers CFC. The love and devotion of the parents and of his sister leave the reader in no doubt as to their sincerity and great human qualities. The latter part of the book - looking to the future of the child and investigating possible reasons for the mutation which has caused the disability are sometimes...more
Scott
Ian Brown's smart, insightful portrait of what it feels like to be a father to a severely disabled child, in this case Walker Brown, born with CFC, an extremely rare but devastating genetic mutation. Also: an exhaustive, exhausting look at what you actually have to DO, all day every day, if your son is as physically challenged as Walker, who, at age 10, can't chew or swallow (and so must be fed through a tube in his stomach), can't speak, needs diapers, and who, if left to his own devices, would...more
Jeremy
I picked up this book last year, but it took me a couple of restarts to make it through. Not because the quality of the content was poor, but because the book hit me so hard emotionally. Like Walker, my son Avery was born with CFC (Cardio-facio-cutaneous) Syndrome, which has left him disabled and developmentally delayed in a number of ways. And like the author and father of the book, Ian, I often struggle to find meaning in challenges life seems to so often present to my son.

The way that Mr. Bro...more
Megan Palasik
Wow. This book is sad, no question about that. Do not read this book thinking you will find a lovey, mushy, happy ending because this is real life. But, wow...this dad is real.

This is the story of Ian Brown. His son, Walker (it's nice to have a father's perspective for once), has cardiofaciocutaneous (CFC) syndrome which is a very rare genetic mutation. It causes the person to have unusual facial features, and usually results in the inability to speak as well as the the compulsion to hit oneself...more
Zachary Zhao
This is the true story of a father whose son (Walker) has one of the rarest genetic diseases that affects slightly more then 300 children around the world. As the father continues to grapple with his son's handicap and tries to make sense of his son's inner world, he also takes the reader on a journey of self-discovery.

It is hard for the reader to find the appropriate response to a story like this. The father is certainly not inviting pity as he shares his struggles with taking care of his son a...more
Wendy
A compelling read by the father of a severely handicapped son, one of only about 100 others in the whole world. The father is remarkably self-reflective and, although at times I wanted him to stop reflecting so much about his situation, as it was pretty painful, I ended the book feeling like this is quite a remarkable treatise on being "handicapped" in this world. It is mostly a description of all the families, doctors, and tests he encountered while trying to connect with and understand the gen...more
Pooker

I think what I appreciated most about this book was the author's honesty. So I will be honest and say that I was not overly eager to read this book. I did not want to have my heart strings tugged or worse yet broken. Nor did I want to feel guilty somehow of having perfect (in my mind anyway) children but was, even so, a less than perfect mother. One who yelled at her perfect children and had less than grateful thoughts about them every once in a while.

I also have to say that as I was reading, I...more
Louise
What an eye-opener this biography is. Ian Brown's search to find out who his son is, why he's here, what his purpose is, what his disability means and who he will become, is at times a sad, soul-searching, and profoundly wrenching journey. Yet, it's a lesson in unconditional love, acceptance of the things we can't change, and the courage to face the inevitable. Ian and his wife struggle to make sense of the terrible genetic syndrome that has stricken their son from the day he was born. So rare i...more
Emily
Ian Brown wrote this book to inform the readers about the way that he dealt with his mentally handicapped child. It was his way of getting out how he was feeling and how he and his wife made it through their everyday life, what they were feeling, and what they thought of it all.
The theme is to inform readers about what having a child with such disabilities is like. It shows what it was like for them and how they dealt with it that way other people can use their methods if they want to. Howeve...more
Meghan Rose
While reading this book, I was most struck by Brown's honesty in dealing with his son's illness and his reactions to it. At times, the emotions are quite raw and Brown's need to find meaning, any sort of meaning, in the situation is palpable. Other times, he seems quite distanced from the situation, dealing almost in abstractions. It gives a good balance to the book and Brown moves back and forth between his life, the medical jargon, and his travels around the world meeting with other families d...more
Jacqui
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...more
Mrsgaskell
This was a book club selection and probably not a book I would have chosen myself. Initially I found Brown’s account of his son Walker’s condition (cardiofaciocutaneous syndrome) and the family’s life with a severely handicapped child very disjointed. CFC is a rare condition (100 cases worldwide) caused by a genetic mutation. Symptoms vary but include facial dysmorphia, skin irregularities, heart murmurs and malformations. Walker cannot speak, he is moderately retarded, has difficulty swallowing...more
AJ
This was featured at the library so I thought I would pick it up. I enjoyed it, but didn't think it was great.

I really appreciated the author's thorough honesty when he talked about raising a severely disabled son. His son is incredibly delayed in nearly every way (though he can walk) and requires 24 hours a day care. The author chronicles what it was like raising him for 10 years (he went to a residential home at 10 and was 13 when the book was published). It is thoroughly exhausting reading wh...more
Jessica
Ian Brown shares his experiences with and attempts to understand his severely disabled son, Walker, who was born with an extraordinarily rare genetic condition called CFC. The book is haunting, intriguing, searing when i least expected it, and more than a little meandering; Brown wanders far afield in his attempts to figure out what makes his son - unable to talk, unable to sign, prone to screaming and self-mutilation, with a tiny, twisted, bent and furrowed body - a person of value. Brown usher...more
Rebecca Holland
Ian Brown, The Boy In the Moon, ISBN 978-03-12-6754-7, St. Martin's Griffin: Ian Brown is an author/a feature Imagewriter for the Globe and Mail. He is an award winning journalist/author.

One would think that he would be well-versed in many subjects, and able to meet challenges head on.

You would think that. Meet Walker Brown, Ian's son who was born with CFC (cardiofaciocutaneous) syndrome. And you will know that Ian Brown doesn't know everything - and he admits it.

Life with Walker as Ian honestly...more
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Subtitle correction required? 3 20 Apr 03, 2011 08:24PM  
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127037
A Canadian journalist and author.

He is currently the host of Human Edge and The View from Here on TVOntario, and has hosted programming for CBC Radio One, including Later the Same Day, Talking Books, and Sunday Morning.

He has also worked as a business writer at Maclean's and the Financial Post, a feature reporter for The Globe and Mail, and a freelance journalist for other magazines including Satu...more
More about Ian Brown...
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