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It's hard to review this book. It was well written, it was interesting. I suppose I'd recommend it. But I found it disturbing and depressing. It's about the author's profoundly retarded and disabled son, his rare genetic disease, and other children like him. Walker, Brown's son, was born 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's mentally and developmentally between one and three years old and will need constant care for the rest of his life.
Usually these books are full of "we wouldn't trade him for anything, he's taught us so much!" which I find hard to understand. What has he taught you? To live in the moment? To find joy in simple things? I guess I don't see those as profound lessons, and I don't feel that's a good trade-off for having to care for a mentally disabled child. This book has a little of that – at one point they see a doctor who comments that in Buddhism the goal is to live in the moment, and Walker is able to do that in a way most of us can't – but it's also straightforward about the frustrations. It starts with a description of a typical night with Walker and the exhaustion he and his wife have endured for all the years of caring for Walker. His honesty is refreshing.
A lot of the book is about their difficult decision to move him to a group home. It took years to decide and then a long time to accomplish this. As an American observing Canadian health care, this was interesting. The province has only so much money for health care, so families have to fight to get a piece of the pie, to the point of hiring a professional to advocate for them.
The rest of the book is about life after Walker has moved to the group home (which seems to be good for him – he has a life outside his immediate family, other people who care for him.) Brown travels to meet with scientists and parents of other CFC patients. Most of them are as profoundly disabled as Walker. One young man has learned to speak and can do things like drive a tractor. It's hard to tell if this is because his parents worked harder with him, or he was less affected by the syndrome. Brown and his wife have, of course, obsessed about what might have been if they'd gotten a diagnosis sooner, done things different, etc. Brown wonders if he and his son can connect, if he can ever understand his son's condition, if his son is happy and fulfilled to the extent that he can be.
He also visits L'Arche group homes for the mentally disabled, where people live in a household as a family, with carers. It's an international organization founded in France by Jean Vanier. Vanier believes that the severely disabled challenge us by their existence. They implicitly ask, "Do you consider me human?" They suggest how arduous it is to be human. They remind us of death. All of that makes complete sense, and made me wonder about the carers and what motivates and rewards them. I'm uncomfortable with mentally disabled people for the reasons Vanier cites, and I can't imagine wanting to work with them. At the same time I can see how good these homes must be for mentally disabled people.
At the end Brown’s still questioning the value of his son's life and whether Walker is or can be happy. The book ends with Walker having a seizure, which will probably kill him, eventually. Brown holds him in his arms and simply knows he loves his son and that his son knows it, and that they'll face the future together.
Yes, Walker brings love to his family because he elicits their capacity for love, but at what a terrible price. Yes, Brown tells us what his son has brought to their lives and convinces us he wouldn't trade his life, but for me it was just too damn sad.
Usually these books are full of "we wouldn't trade him for anything, he's taught us so much!" which I find hard to understand. What has he taught you? To live in the moment? To find joy in simple things? I guess I don't see those as profound lessons, and I don't feel that's a good trade-off for having to care for a mentally disabled child. This book has a little of that – at one point they see a doctor who comments that in Buddhism the goal is to live in the moment, and Walker is able to do that in a way most of us can't – but it's also straightforward about the frustrations. It starts with a description of a typical night with Walker and the exhaustion he and his wife have endured for all the years of caring for Walker. His honesty is refreshing.
A lot of the book is about their difficult decision to move him to a group home. It took years to decide and then a long time to accomplish this. As an American observing Canadian health care, this was interesting. The province has only so much money for health care, so families have to fight to get a piece of the pie, to the point of hiring a professional to advocate for them.
The rest of the book is about life after Walker has moved to the group home (which seems to be good for him – he has a life outside his immediate family, other people who care for him.) Brown travels to meet with scientists and parents of other CFC patients. Most of them are as profoundly disabled as Walker. One young man has learned to speak and can do things like drive a tractor. It's hard to tell if this is because his parents worked harder with him, or he was less affected by the syndrome. Brown and his wife have, of course, obsessed about what might have been if they'd gotten a diagnosis sooner, done things different, etc. Brown wonders if he and his son can connect, if he can ever understand his son's condition, if his son is happy and fulfilled to the extent that he can be.
He also visits L'Arche group homes for the mentally disabled, where people live in a household as a family, with carers. It's an international organization founded in France by Jean Vanier. Vanier believes that the severely disabled challenge us by their existence. They implicitly ask, "Do you consider me human?" They suggest how arduous it is to be human. They remind us of death. All of that makes complete sense, and made me wonder about the carers and what motivates and rewards them. I'm uncomfortable with mentally disabled people for the reasons Vanier cites, and I can't imagine wanting to work with them. At the same time I can see how good these homes must be for mentally disabled people.
At the end Brown’s still questioning the value of his son's life and whether Walker is or can be happy. The book ends with Walker having a seizure, which will probably kill him, eventually. Brown holds him in his arms and simply knows he loves his son and that his son knows it, and that they'll face the future together.
Yes, Walker brings love to his family because he elicits their capacity for love, but at what a terrible price. Yes, Brown tells us what his son has brought to their lives and convinces us he wouldn't trade his life, but for me it was just too damn sad.
