This was a heart wrenching, difficult read. Not because the writing is not good (it is, exceptionally so) but because the topic is so disturbing to me as a mother.
I have to admit I had a vastly different impression of Ian Brown before I read excerpts of his account of life with a severely disabled son in the Globe and Mail: he seemed a bit of a scoundrel at times, a bit louche. I still remember him flirting with that twit Candace Bushnell in an interview during her 15 minutes of Sex and the City fame.
I was also shocked to find out he was married to the writer Johanna Schneller (she's so smart, progressive, talented - what??).
I was even more disturbed to learn the severe nature of his son's disability. Walker has Cardiofaciocutaneous Syndrome or CFC, described as "an extremely rare and serious genetic disorder". The condition is complex and very disturbing to contemplate - the difficulty of it, the suffering involved for the little boy, the things the family must have experienced while he lived with them - he now resides in a group home with other handicapped children.That will learn me ... I had no idea how difficult this boy's life was and consequently what the family experienced. Yet another instance where I have leapt to a superficial assessment of a complicated human being.
Walker Brown was born a few months before my own daughter in 1996 and was five weeks premature (as was my daughter). That sent a shiver down my spine. I kept picturing myself as the mother, as the parent of this child. The somewhat selfish yet typical thoughts that Brown had about marriage, children and about disabled children fluttered through me too when I was young. You cannot imagine yourself dealing with these adult responsibilities and/or travails in a rational manner yet parents do, we all do.
The reader intensely experiences the range of emotions Brown feels: grief for his boy's suffering, guilt for the seeking of relief from this difficult situation, rage at one's fate and dashed hopes for the child, fear at what the future holds for him, for himself as a parent, anger at the lack of foreseeable change, anger at the lack of answers. One description of a sleepless night spent with Walker who is often in pain, or uncomfortable, or just restless, is gut wrenching, exhausting, just in the reading of it. Imagine living it, year after year. I simply cannot.
He captures the chaos of emergency rooms visited, the tenderness and joy of the most private moments with one's child, the brief illusion that everything will be normal, that medicine will help, that one day things will be "fixed" somehow, the parade of specialists with unsatisfying answers.
This sort of intense emotion and constant worry takes it toll between husband and wife:
Weeks go by without any real contact between us - and then we fight, perhaps to force some connection. The evidence of Walker's demanding presence never changes, the household stigmata of a disabled kid: the mangled window blinds ... the endless piles of laundry that self propagate like jungle plants ... the avalanche of potions and lotions and syringes ... all of it. With this chaos besetting us at every turn, would it be to much for him (for her) to put the fucking milk away?
There is a tender, slightly disturbing, moment where Brown observes his wife gently flirting with a man at an office Xmas party, whom he knows is attracted to her :
And how can I begrudge her that moment of friendship and freedom and even flirting, that other intimacy, after all she's been through; how can I begrudge her some elemental attention, the frankly adoring gaze of someone fresh and new ... I nurse a drink, and I wonder what she does when I am not around. I know she wonders the same about me. Mostly we forgive each other. Walker taught us how to do that.
Once Walker is placed in a group home (and how excruciating that decision is) Brown is determined to meet other CFC children in Canada and the U.S. The total of diagnosed cases of CFC in the world number in the mere hundreds.
But his assessment of the other parents he meets is refreshingly honest. They are not saints but he does admire many of them. Some he seems to imply are deluded in the belief that they have been sent special "angels", that they are following God's will in caring for their disabled children. A non-believer himself, still he understands why some may try and understand this twist of fate through that religious lens. And yet others he believes, with a slight air of annoyance, are unrealistic in their expectations of what the government and society may do to assist them:
On hellish days the mawkish sermonizing about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical highschool ... It's hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge.
Brown searches for a possible way of life for his son as they both age. He visits L'Arche, one of a series of homes for the disabled in France, founded by Jean Vanier. He is pleasantly surprised by the joy and warmth he finds there, not because the residents are different than the many disabled that he has encountered but the manner in which they are treated, the beauty of the home and the location.
He muses that perhaps the "purpose of the intellectually disabled like Walker might be to free us up from the stark emptiness of the survival of the fittest".
The most upsetting section was Brown's contemplation of suicide or the possible death of both himself and his child. The horrifying possibilities ... it is an almost unbearable admission of what we might be driven to do in such moments of intense suffering.
I appreciated that he does not shy away from the word "disabled", that he does not appear to be trying to change what is the reality of Walker's situation with a politically correct fabrication. This has always rankled me about the disability rights movement. Some thoughts (not my own) about the "correct" usage of words to describe people with disabilities here.
I wish that every parent could read this book and then thank their lucky stars that their biggest perceived problem is a kid who won't eat her vegetables or perhaps talks too much on her cell phone. I know I did when I finished the book.
I will leave the last word to the author: When Walker was an infant ... I spent part of every day furiously wishing that a test had been available ... Now that I know Walker, I am relieved there was no such test ... Because on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human ...