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The Boy in the Moon: A Father's Journey…
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The Boy in the Moon: A Father's Journey to Understand His… (2009)

by Ian Brown

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» See also 39 mentions

Showing 1-5 of 20 (next | show all)
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 rare. Walker is small—he weighs just sixty-five pounds—and globally delayed. He can’t feed himself, he barely communicates, and he functions at the level of a two-year-old.

There are no ribbon campaigns or telethons for sufferers of CFC and very little medical knowledge about the condition; it’s only since the arrival of the Internet that a small support network of families has coalesced. Brown and his wife, journalist Johanna Schneller, muddle through—epically sleep deprived and battle scarred from Walker’s vicious tantrums—with the help of a miracle-worker nanny and a series of doctors, therapists, and support caregivers, none of whom offer much hope that their son’s situation will ever improve.

Brown expanded the story from a series of articles first published in the Globe. Even with the most intimate material, he maintains his reporter’s discipline and impartiality, a rigour that makes the storytelling still more intimate. His accounts of his attempts to connect with Walker, and to be a good father, are at once tender and resolutely unsentimental. “Walker had given my life shape, possibly
even meaning,” he writes. “But Walker had also made our lives hell.”

The boy’s needs strain Brown’s finances and his marriage. (“The grit of resentment lay like a fine dust over everything,” he writes of his relationship with Schneller.) And in the zero-sum game of contemporary child rearing, he is beset by guilt for not being enough of a “disability warrior” for his son, and by fears that other parents view him as a failure.

Yet raising Walker also offers Brown extraordinary moments of grace: the visceral pleasure of sharing a bath or holding hands; the wisdom of a kind-hearted doctor who likens Walker’s condition to the Buddhist idea of “pure being”; and the heartbreaking decency of friends who “tried to reach down into our darkness and hold us.”

Given the current glut of smug daddy blogs and cutesy mommy memoirs, it’s bracing to read a story about parenthood in which there is something so extraordinary at stake. Here, Brown and Schneller grapple with whether to place Walker in a group home. It feels like a betrayal to send him away, but the level of care he requires is simply too much for them to manage. To sort out his feelings, Brown embarks on a journey to meet other families of children with CFC—a narrative device that at times feels forced. And after a visit to a Christian community of disabled people in France, he finds something like peace. It doesn’t come from the group’s beliefs, which he respects but does not share. Rather, it lies in himself: “I have begun simply to love [Walker:] as he is, because I’ve discovered I can.”
( )
  DawsonOakes | Apr 6, 2013 |
Ian Brown (not to be confused with the Stone Roses front man) is a Canadian journalist and radio personality. He and his wife Johanna (also a writer) have two children, Hayley and Walker. Walker has CFC, a genetic syndrome that renders him developmentally disabled, unable to talk, and subject to a raft of health problems.

Brown's book is a memoir of the difficulty of raising his son, a rumination on the history of the care (or lack of same) of the mentally retarded (and yes, Brown uses that word) in history, a quest for answers, and a philosophical examination of the value of the less abled to the rest of us, and vice versa.

It's a book you'll certainly dialogue with. It'll challenge your idea of your own level of empathy and get you thinking about the role of society in raising special needs children. It's especially relevant in these times: first because genetic testing and termination of pregnancies may eventually eliminate these special cases from our ranks; second because the current social Darwnism being shoved down our throats by small government advocates would offer no respite or help for parents who would most need it. ( )
  EricKibler | Apr 6, 2013 |
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 (both writers and so home a great deal of the time) and a nanny provide for him at home for the first 11 years of his life. The hardest part of dealing with him, however, is not the diapers or lifting a child growing into his teens or the fact that they never get to sleep an entire night, but the fact that Walker hits himself in the head all the time. As one can guess, that’s agonizing to watch. And it finally comes to a point where they just can’t do it by themselves anymore, physically or emotionally; they have to place Walker in a home.

The first part of the book is biographical: Walker’s and their history, what they did and how they did it. The second half is spiritual and philosophical: what is the meaning of Walker’s limited life? What is the meaning of anyone with a mental handicap? What do they teach the rest of the population? The author gives us a history of how the mentally handicapped and mentally ill have been treated in the past- for the most part, horribly. He spends a good deal of time with the people of a group of communities called L’Arche, founded by Vanier in France forty years ago and extending into Canada and the USA now. In these small communities, the mentally handicapped are treated as the norm. They and their care givers have meals together, go out into the towns, and are all equals. It’s a fairly ideal situation, and there is a twenty year waiting list for people to get into these communities. The home that Walker is in isn’t quite as good as L’Arche, but it’s pretty good. Brown also makes great efforts to medically understand Walker’s disease; he has genetic tests done to try and get a positive diagnosis of CFD (he doesn’t) and an MRI to see what Walker’s brain looks like. He goes from place to place, trying to find out how Walker works, whether Walker has any sense of self. He keeps hoping that there is some way to ‘fix’ Walker.

In the end, Brown really gets no answers. Walker has made his father into a different person that he was before- less selfish, more attuned to others, more appreciative of his friends and family, and, finally, a person who has to accept that Walker cannot be fixed, he can only be loved for who he is. If he has a ‘purpose’, other than to just live, if may be that.

The book is, frankly, pretty grim. No matter how much love there is, taking care of someone who is severely handicapped is hard work and it’s very hard on families. That they were able to keep Walker home for over 10 years is testament to their devotion. But despite its grimness, the book is a well written meditation of what it means to have a family member with a mental disability. ( )
  dark_phoenix54 | Nov 23, 2012 |
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 sybdrome. 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. ( )
  robynr | Apr 19, 2012 |
This review was written for LibraryThing Early Reviewers.
This is a book about parenting a child with an extremely rare disability, written from the father's perspective. It's a book about the realities of such parenting, for example, about how for the parents of some children, the sleepless nights of babyhood aren't something that the child and family grow out of of but rather just a part of daily parenting, year in and year out. It's a book about the difficulties of finding options for child care and the emotional dilemma of choosing to care of a special needs child at home, or having the child live in residence, if that's even an option at all. In Ian Brown's boy's case, it did become an option after many years on a waiting list, and seems to have been the best option for Walker, the boy in question in this book.
The first part of this book is mostly about the reality of having parented Walker full-time (two parents and a daytime nanny) for, I believe 15 years or so, until Walker found a spot in a home with full-time caregivers and other teens with special needs like him.
Then, the second part is more about a quest for information and meaning once Walker no longer lives at home. The author does this by meeting other kids with CFC (the extremely rare disorder his son has), their families, genetics researchers who work at identifying CFC, and adults living with disabilities and their care-givers in l'Arche communities in Montreal and France. This part is both pragmatic -- how will Walker live as an adult, how will he be cared for if his parents are no longer around? -- and philosophical -- what is the contribution of Walker to the world? why are there people with such severe disabilities and what is their place in society? It's about the inherent value of being human and of simply being.
One aspect that I found lacking in this memoir was more details about the other members of the family, the author's wife and daughter. They are ever present in the background, as they must be, in order for the author to tell what he is telling -- his experience of parenting his son. And I get that that's what he's focusing on -- parenting his son, not a general family memoir. And I get that he can't do it without referring generally to the family setting. But the effect on me as a reader was to just have my curiosity piqued about his marriage, his wife's experience parenting Walker (in what ways was it exactly like his, in what ways did it differ?) and especially his daughter's childhood experience with her parents being consumed by her brother's needs. I would have liked to get a bigger, better picture of the overall family life.
This was a thought-provoking and informative memoir. Well done. ( )
  Deesirings | Dec 10, 2011 |
Showing 1-5 of 20 (next | show all)
Brown boldly goes where even he – smart-mouthed, combative scribe – has never gone before, into the very core of compassion and anger and pain.
added by chazzard | editGlobe & Mail, Paula Todd (Sep 25, 2009)
 
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Amazon.com Product Description (ISBN 0312671830, Hardcover)

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.

(retrieved from Amazon Mon, 30 Sep 2013 13:44:16 -0400)

(see all 4 descriptions)

Ian Brown's son, Walker, was born with a genetic mutation so rare that doctors call it an orphan syndrome: at most, three hundred people around the world live with it. At thirteen, Walker is still in diapers: he is globally delayed, he can't speak, and he has to wear cuffs on both arms so he won't constantly hit himself. He will require constant care for the rest of his life. The boy in the moon tells the story of one frail boy and the tiny constellation of people who love and care for him. From this intimate perspective, Ian Brown opens out a profound meditation on what life is worth, and what it means for all of us.… (more)

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