Thursday, October 25, 2012

The Boy in the Moon, Thoughts + Quotes

The Boy in the Moon, by Ian Brown

I am being generous when I say this is only about the sixth book I have finished since Jasper was born a year and a half ago. This is not a record I am proud of, as reading at my leisure is something I dearly miss. Like most everything else, my reading choices are dictated by infant stroke. Preferred subjects include stroke survivor autobiographies, brain plasticity, accounts of neurological conditions, other parents' experiences raising special needs kids. Casual titles like Bringing Up Bebe, Born to Run sit on my nightstand, half-finished, read with half-enthusiasm, with half-interest. I neglect catching up on email, filling out pages long therapy questionnaires for Jasper, researching graduate school programs, applying for social security, and instead devote rare free time reading The Boy in the Moon. Our children have vastly different diagnoses but the author's words and emotions resonate at a visceral level. In the middle of the night, I have been plagued by many of the same thoughts, feelings, fears. There is no room for sentimentality. The starkness of his words - raw, ugly, honest, unbearable, atheistic - draws a vivid picture of life with Walker. There was a time when I would underline striking passages in books. With The Boy in the Moon, underlining was not enough. While reading I kept a pad of small post-it notes at hand. My book now sports a thick, bright pink fringe. What follows is a compile of those passages that made me ache, cry, laugh, that utterly tore me apart.

I have not written a book review ("book report") since about the sixth grade and will not attempt to do so here. I simply have a compulsion to share the experience of reading this book - my fraction of the experience of having a special needs child. A compulsion to scream, shout, cry to everyone around me - how too familiar these words are. How I wish I could not relate, but merely only empathize.

Some explanation of CFC, Cardiofaciocutaneous Syndrome - a genetic disorder thought to affect less than one hundred individuals worldwide - is best left to the author:

The name itself was nothing more than an amalgam of the syndrome’s most prominent symptoms: cardio, for ever-present murmurs and malformations and enlargements of the heart; facio, for the facial dysmorphia that was its signal characteristic, a prominent brow and down-sloping eyes; cutaneous, for its many skin irregularities... Symptoms ranged wildly in severity and kind...Some CFC children hit themselves, though most didn’t. Some could speak or sign. All but a few were anywhere from mildly to severely retarded. Heart defects ranged from serious to unimportant...Their skin was often sensitive to touch, to the point of agony. Like many CFC children, Walker couldn’t chew or swallow easily; he couldn’t speak; his vision and hearing were compromised...he was thin and wobbly, “hypotonic” in the medical jargon.

At the core of the book is the author's central question, Who is his son? Does he have an internal life? Is he even capable of one?

                                                                                *     *     *

The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his - a life lived in the twilight, and often in pain? What is the cost of his life to those around him?

Sometimes he cries for hours for no reason. There are nights when nothing works, and nights when he is up and at it, laughing and playing and crawling all over me. I don't mind those nights, tired as I am: his sight is poor, but in the dark we're equal, and I know this makes him happy. In the night, there can be stretches when he is no different from any normal lively boy. It makes me almost cry to tell you that.

I often wondered if we were imagining Walker's progress, inventing the connections we thought he was making.

I could spot the parents of the delayed kids in the school parking lot when I dropped Walker off: they were the ones who looked as if a bomb had just gone off in the back seat of the car. They were starved for contact and longing to tell the truth.

What I couldn't tell was what the routines meant to him. Did he know he was "painting" when the teacher was guiding his hands? He had a friend, Jeremy, but did he know what a friend was? He sat at the table with the other kids for Snack - a stretch of time named Snack, I loved that - but did he feel the communal buzz? What went on inside that thickened skin, behind that swollen heart? I didn't care if he never threw a ball or tormented his sister or skied beside me or told a joke or dated a girl (though I would love it if he did). 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.

But if he was asleep and I could stay awake, I could read, and did, voraciously. I have never appreciated words and books and time and the life of my mind more than I did on those stolen late nights.

...until twenty years ago, children this medically complex didn't exist. They didn't survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.

In practice, Walker deprives us of any privacy we ever had - and we are private people, introverts, readers and ponderers. Instead of bringing us together, Walker scatters us, making us both less private and intensely more so at once, desperate for a refuge where there are no interruptions, no surprises. I often worry I will never read an entire book again; my concentration seems permanently shattered...It’s all we can do to make it to the medical appointments.

Johanna (author's wife) had been in touch with [the] CFC network early on, before the Internet existed. But she was impatient then for specific advice, for skin creams and therapies that would help right away. "It seemed to be a lot about Jesus and angels and thinking of the kids as gifts from God," she told me years later. It was hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge.

The disabled are a challenge to everyone’s established sense of order: they frighten us, if not with their faces, then with their obvious need. They call us to be more than we ever thought we would have to be.

Everything about Walker was complicated by something else, and there were many days when I appreciated that, when it deepened him, and gave me more to think about. Sometimes it was all there was to think about.

...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; a concentrator of joy; an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted.

He made me realize how good we have it, most of us, most of the time - how we think we have problems, but we really don’t, compared to him. (discussion between the author and his wife)

But there was no escaping their guilt: it lived deep in them, deep in the germline of the maternal. Johanna was Walker’s mother, the human being out of whom his flawed and aching body had emerged. She could not think about his brokenness, it called that yelping sadness up from within her, and yet she could not ignore him either. The best she could do was stay calm, keep busy and moving, keep caring without asking herself too many questions. It was a delicate trick. Like trying to walk in high heels over a grate in the sidewalk, except that the grate passed over hell and eternal damnation.

Taking care of Walker was so all-consuming that all the time you weren’t caring for him, you had to spend catching up - on sleep, on work, on chores and tasks and taxes and returning phone calls, not to mention whatever exigencies and emergencies were waiting as far as his care was concerned. Whoever was caring for Walker, the other person was perforce catching up, and so it always felt as if you were doing it alone, on your own.

Do you recognize any of this? I suspected on those dark nights no one else did, that no one else knew what this was like; I was convinced we were alone. It’s hard to explain how we felt for having failed to teach Walker to sleep or speak or eat or pee or even look at us - can you imagine the magnitude of that failure?

He loves the snow, the outdoors, the fresh air on his ears and his head. Everything he likes is so important to me. They feel like accomplishments.

What I resented was the idea of my son’s life reduced to a typing error in a three-billion-long chain of letters, to one dinky nucleotide. The absolutism of genetics offended me.

First the doctor showed me a cross-section of a normal corpus callosum: the part I could see looked like an oxbow lake, or a long balloon animal on a white plain.
Then he showed me Walker’s. It didn’t look like a lake or a balloon dachshund. It looked like a thin trickle of a stream with a tiny pool at its end, like a tendril, a single shoot off a sweet-pea plant, a fraction of the width of a normal corpus callosum.
It’s hard to describe how quickly it crushed me.

The more I struggle to face my limitations as a father, the less I want to trade him. Not just because we have a physical bond, a big simple thing; not just because he’s taught me the difference between a real problem and a mere complaint; not just because he makes me more serious, makes me appreciate time and Hayley and my wife and friends, and all the sweetness that one day ebbs away.

I held him in my arms as quietly as I could, and 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.

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