Customer Reviews

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

5 star:		(16)
4 star:		(4)
3 star:		(2)
2 star:		(2)
1 star:		(0)

 

 

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.

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!

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.

I did not really find this book depressing at all. And as to other reviewers, who did not understand the author's point in writing this book, I disagree with that as well. A book does not have to have a happy ending, or even a "conclusion", if it is non-fiction.

I was inspired by the author's lack of self-pity. Though the fate that befell this family was a hard one, he was able to find some small joys in his handicapped son. It must be incredibly frustrating to have a child who cannot communicate his needs or wishes, and yet Mr. Brown never says "poor me". I found myself thinking that if I had to deal with this situation, I hope I would be as strong.

I'm glad I read this book; it gave me something. That to me, is a positive thing, even if what it gave me was sometimes painful.

I have purchased 5 copies of this book; one for myself and the rest for family and friends. Until one experiences firsthand what it is like to have a severely handicapped child in the family it is impossible to understand the life-altering impact upon one's life. My grandson does not have the exact syndrome as the author, Ian Brown's son Walker has, but it is considered an "orphan syndrome" as well. Certain syndromes are considered "orphan" because so few people have them. In my grandson's and Walker's case there are about 300 hundred people in the world with each syndrome.

Ian Brown is a journalist by trade. He is also a loving father. I found this book beautifully written because it is so honest. The journalist writes so well about the specifics of his son's syndrome. The father writes about those questions we all ask, such as why and how? One of my biggest frustrations has been to explain to others what it is like to have a child who may forever be an infant, who has one health issue after another, whose slightest smile and meeting a milestone is never taken for granted. Ian Brown writes to these issues and much more. After reading this wonderful book I was so relieved to know there is a community in the world who does understand and a spokesperson so gifted in sharing with others.

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 most of the time. Devastating.

However, I ranked this book with 5 stars. Why do that for something that is so sad and depressing? Because Brown's pure honesty into his world with his family is raw and beautiful. He writes about finding out about the syndrome and what parents have to go through before a correct diagnosis is made. He writes brief sections periodically throughout the book about educational needs/struggles with Walker. But mostly he writes about his personal emotions/struggles/successes in raising this child that he loves and sometimes hates at the same time. Brown opens the book with a "night in the life of Walker's father" chapter that is heart-wrenching and scary. But he does it because that is what has to be done. The Brown family is not one of those families who has a child with a disability and they pretend to be happy about it all the time or that it's as easy as raising any other child or who make it their life's goal to find a cure. The Brown family is living their life the best way they know how (with a nanny during the day) and learning about themselves in the process.

I loved Brown's chapters in the latter half of the book where he is exploring "homes" and care options for his son. He travels to other countries and learns a lot about how different people and cultures view people with disabilities. He becomes more comfortable around others with disabilities and thus more willing to let Walker live at least part time in a "home" so that everyone can have a somewhat happier and more "normal" life. He has somewhat philosophical discussions about what it means to be a person with a severe disability and what their life might mean. What are the ethical dilemmas surrounding this population and what are the options (since there are no answers).

This book was not a "look at me and all of the things I've done to change the world because I have a child with a disability" and it was also not a "woe is me, I have a child with a disability, pity me" book. This book is a glimpse in the head of a father. While his son does have some major disabilities, a lot of the thoughts, emotions, fears, and successes that Brown describes are probably similar to those of any father, just on a different plane.

I bought this book eagerly, because I have a profoundly retarded adult child too. I did not expect it to be very interesting, but hoped for the companionship of a kindred spirit.
To my utter surprise, the book was mesmerizing! The father who wrote this book lets me know both himself and his son. He writes openly, without self pity, and with great love for his son Walker. He greatly downplays his son's habit of bashing him in the face/head with his own head. I would not have been able to cope with that one. Yet I have had to cope with other horrible things. This father tries endlessly to make sense of Walker's actions. To understand why he does what he does.
I love how Ian learns, as time goes by, to accept his son just for who he is, instead of trying to make him fit in the world. I had a sign made for my daughter's bedroom wall that says: "Pure love exists where nothing is expected in return." I dedicate that sign to Ian Brown with great respect. This book is a keeper, for sure.

The author, Ian Brown, has a son with CFC (Cardiofaciocutaneous Disease) a rare genetic condition and not researched much, making diagnosing and dealing with it extremely difficult.

Mr. Brown is an amazing author and father. He was very honest about his feelings with respect to having a (severely) disabled child. He struggles to find the tiniest joy in his son's life, but he manages to do it. He shares how he handles Walker and adapts to life.

I'm not quite sure I agree with Mr. Brown's arrangement of parts of the story. In the first few chapters, everything flowed with respect to Walker's life. After that point, he jumped around in Walker's life. You have to stop and think for a moment what age Walker actually is in the book because the author reflects back upon different parts of his life. A very poignant and well written book.

I don't usually write reviews. I found this to be a really moving piece of writing with, amazingly, humor peppered throughout. I thought the writing was totally engaging. I loved the honesty. I'm so tired of people acting like loving your children is so natural...there are times that raising kids is so wearisome that you lose your perspective. These parents are faced with challenges that would make anyone give up. It's all about endless sacrifice and unselfishness.

When I read a book I'm going to review, I often commit the sin of folding over pages that have a point I want to remember. Well, this book is pretty darn folded up. Over and over, Ian Brown made a point that I was completely taken with.

He writes about his son, Walker, who has a very rare genetic disease, CFC. His son is very disabled---he can't talk, he has many severe medical problems and toughest of all for his parents, he sleeps very poorly. For the first 11 years of his life, much of their life is taken up by caring for him, until they make the extremely tough decision to put him in a group home. In this book Brown explores his feelings about his son, and also explores CFC and the world of the disabled.

Some of those folded over points---how the rare pictures that capture the "normal" side of Walker are so treasured, the dreams that come where Walker can talk like a trial lawyer, the constant bargaining that has to occur in a marriage where there is a disabled child---subtle digs over who was up longer last night with the child, the time on a flight where a woman talked about how family should only have total devotion to their child, and how Brown thought---"try taking Walker for a few days and see how you feel", the overwhelming total love that we have for the child who needs us so very much, how we totally understand why family and friends don't give us a break by taking the child for a night or two, while at the same time feeling resentful that they don't---just hundreds of moments honestly described that show the complicated love for a disabled child.

I wish there were more books like this---very well written, very honest and well-researched true accounts of raising a child like Walker. I have a six year old daughter with autism, and although she doesn't have all the challenges Walker has, so much here touched me deeply with feelings of recognition. A wonderful book.