On Saturday, we took the boys to a skatepark in downtown Denver. Parker and Thomas were overwhelmed by the skill of the older boys but wanted to stay and try the park while I realized a little too late that I needed to find a restroom.
According to Peter's iphone and the "free bathroom" app he found very quickly, the nearest restroom was at "The Tattered Cover" bookstore located 0.75 miles away.
So I took Henry with me and I must have taken the long route. 0.75 miles was not exactly true, but we did arrive. After using the restrooms, I was free to browse this amazing bookstore again. I started out in the new non-fiction section.
What is strange is the first book I picked up, and entirely by accident, was titled "The Boy in the Moon".
Once I picked it up, I stood there for probably an hour until I received a call from my husband that they had arrived at the bookstore.
Have you ever stood in a bookstore and cried? Neither had I before this point. I was amazed by the candor and beauty and wisdom from the sections I read in this amazing book by Ian Brown (and thankfully, Henry slept the whole time). I also was struck with this feeling of being blessed. I've never woken in the middle of the night like he has.
If you have a chance or can put this book on your list of must-reads, please do. Ian Brown is someone who inspires me greatly. His book is beyond synopsis.
Before I share this review, let it be said that the truths Ian Brown shares in his book are far more eloquent than can be expressed in a review of his book. I read and re-read one section with Jean Vanier discussing the way parents of disabled children deal with their reality.
I now wish I would have bought the book to write about it more at length but I did not... Ian Brown's approach to this very difficult subject is as a journalist, approaching all angles and interviewing all sources. The poetry he has included struck me to my core and I am thankful to have found such a beautiful memoir by accident.
Happy Father's Day to my husband, father, father-in-law, and all my amazing father friends out there.
Here is the book review in the New York Times:
May 5, 2011
What Disabled Children Teach Us
By ROGER ROSENBLATT
THE BOY IN THE MOON
A Father’s Journey to Understand His Extraordinary Son
By Ian Brown
Illustrated. 293 pp. St. Martin’s Press. $24.99.
At night, Ian Brown’s 8-year-old son, Walker, grunts as he repeatedly punches himself in the head and ears.
His face is distorted, with an over-large brow, sloping eyes and a thick lower lip. He cannot speak. He cannot eat solid food, and takes in formula through a tube from a feedbag powered by a pump. The tube runs through a hole in his sleeper into a valve in his belly. When Walker’s own punches begin to awaken him, his
father must disconnect the tube and lift the 45-pound boy out of his crib, carry him down three flights of stairs and try to coax him back to sleep. He also must change Walker’s ballooning diaper, as the boy is not toilet trained, and prevent him from smearing excrement everywhere. He then feeds him a bottle and tiny doses of Pablum. The kitchen is covered with the film of Pablum dust. Brown’s tasks are performed as quietly as possible so as not to disturb his wife, Johanna, and Walker’s older sister, Hayley. In the first eight years of Walker’s life, neither parent slept two uninterrupted nights in a row.
Brown begins “The Boy in the Moon” this unsparing way because he wants to fling us into his story, alongside him and his family, and because as a writer he knows that an account of the plain facts will bring us to our knees more efficiently than a dressed-up version. Walker (the sad irony of the name) was born with cardiofaciocutaneous syndrome (CFC), a genetic mutation so rare that just over 100 cases have been reported worldwide. Over the course of this book, the truth that Brown learns from his son is also rare — that the life that appears to destroy you is the one you long to embrace. Whatever is human is disabled. Walker is unable to stop bashing himself, and his father is unable to understand him. The boy is likened to the man in the moon, whose face we see though we know it is not there. The face is revealed by our believing in it. AsBrown searches for his son’s mind, he finds his own.
He proceeds by leading us through a series of questions and quests regarding the science of Walker’s condition, and the boy’s future. Will he change, improve? Can he be taught? Should he be institutionalized? No one would have blamed the Browns if they had placed Walker in an institution from the start. Mother and father put the question to themselves, and their answer is the same: “No, no, not now. Later.” The reason for the delay is love. Walker brings a strange, sweet love to his family, not because he exhibits love himself, but rather because he elicits their capacity for it.
Along the way, the parents despair, quarrel, blame themselves for Walker’s lack of progress, fall into dark silences. There are money worries. Walker’s formula alone costs $12,000 a year. Husband and wife have no privacy. They pay less attention to each other than to Walker. They learn to live with him as a sideshow attraction in public. The perceived normalities of other families insult and assault them. In his investigations Brown discovers that had Walker been conceived today, a test administered at 10 weeks of pregnancy might have been available to detect abnormalities. Johanna says she would have had an abortion. Brown says, “But then you wouldn’t have had Walker.” Johanna counters that a fetus would not have been the Walker they know now. Brown speculates about what the world would be like without imperfect people like Walker. What we take from such exchanges is how lovely the couple are in their candor. One cannot help wondering if, in his formless, undemonstrative way, Walker created them.
Brown’s scientific pursuit is largely fruitless. He meets other parents with CFC children, but they offer only a passing communal solace. Too little is known of Walker’s condition. Brown rejects the idea of his son’s life “reduced to a typing error in a three-billion-long chain of letters.” Life is more complicated than a genome. He learns more from his travels in France, and in Canada, his home country, where he consults those who have given their lives to both aiding and learning from the disabled. People like the researcher Gilles Le Cardinal and Jean Vanier, who has created networks of support groups and communities for the afflicted, teach him much about Walker’s hidden mind. The 82-year-old Vanier, who founded L’Arche (after Noah’s ark), an international organization of communities for the intellectually disabled, 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.
Brown’s research appears to give both father and son a raison d’être. As a journalist — a feature writer for The Globe and Mail — Brown knows the satisfaction of learning a foreign subject and writing about it with newfound authority. The difference here is that most of the time journalists treat learning as a buffet at which they taste and move along. The story Brown is working on is the justification of his and Walker’s life. Yet he maintains the reporter’s tone of cool inquiry, even as he delves into matters of the spirit, which gives his learning process the feel of a reasoned capitulation. Brown does not seem born to spiritual thoughts. When he expresses them, they sound all the more persuasive, as one feels the pull of his natural resistance.
Walker is nearly 13 when Brown’s story ends, and he has changed a little. He is drawn to the sound of a human voice, even though he cannot produce one himself. It is said that babies learn language in order to tell the stories already in them. Walker cannot tell the stories inside him, but his inability may be his story, the one told in silence, of frustration and gratitude. If he knows anything, it is that he needs. He may even intuit that he is needed. When inevitably the Browns place Walker in a group assisted-living home, a white bungalow on the edge of town, it allows him what the family never imaged for him — a life of his own.
Standing back, Brown contemplates the mystery of his son, which contains other mysteries — for instance, do people like Walker improve evolution by testing our sympathetic capacities, thus moving us toward a survival of the weakest? “What if Walker’s life is a work of art in progress?” he asks. “Would that persuade you to take care of him for me?” The hurling of this gauntlet is what we have been thinking (dreading) all along. The Browns live in “an underworld of Walker’s making.” Of course they do. Yet who does not live in a world of someone else’s making? The trick lies in the attitude one brings to the inevitably compromised life. In a way, the containment that Walker forces upon his family offers an invitation to become creative within strict limits. Richard Wilbur said the strength of the genie comes from its living in a bottle. As relentlessly difficult and sorrowful as is the life that Walker shapes, it also insists on something beautiful in reaction to it. Thus Brown’s book.
But still. To be sure, Walker has made the Browns greater people. He has alerted them to the value of living in the here and now. He has helped to enlarge their ethical nature. He has made them aware that in most important things — war, love, death — we are as helpless as Walker. Nonetheless, for all that and then some, would we assume the care and feeding of Walker Brown? The father’s challenge is insincere. He would not trade his life for any of ours.
A wonder occurs on Page 50 of this book. The reader has been immersed in the endless pain of living with Walker. Suddenly there is a photograph of him and his father as they loll in a chaise. And Walker looks very much like an ordinary child. There is something slightly off about the eyes, but no more than that. After our imagining a heartbreaking monster, we see instead that Walker is close to us. He is the underdeveloped us, the unreachable us of whom we are always dimly aware. The image shepherds us through the rest of the book even after we are shown other, clearer photos of the boy’s malformations — Ian reading a newspaper, Walker leaning back in his arms, and the two of them at peace.
Roger Rosenblatt’s most recent books are “Making Toast” and “Unless It Moves the Human Heart: The Craft and Art of Writing.”
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