by Ian Brown
My rating: 5 of 5 stars
Note–Reviewed for Amazon under the Amazon Vine Voice Program
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.