The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son
Ian Brown and his wife, Johanna, have a daughter, Hayley, and a just-born baby, Walker. Walker has a rare genetic deformity that makes it impossible for him to eat except through a tube. He will need diapering, even beyond the age when toilet training has normally taken place. He can't talk, nor can he respond to stimuli in the way that is expected of other children his age. Ian and Johanna are sleep-deprived and can barely keep up with their jobs as writers while trying to take turns having sleepless nights in order to give round-the-clock care to their infant son. As he grows older, he begins to bang his head on walls and tears at his ears, for unknown neurological reasons. At an age when most parents would have put teething pain and diapers behind them, there is no relief in sight for the beleaguered family. The parents have an especially supportive network of friends and extended family. Subsidies from government allow in-house workers and nannies. Due to the extremity of the challenge, the staff is constantly changing (revolving door) but nevertheless includes stellar individuals of much longer tenure such as Olga.(The book does jump back and forth between two periods: The first two or three years of Walker's life, and another one closer to when he is ten and over. The jumps are never gratuitous, and the thematic juxtapositions from different phases of Walker's growth are expertly rendered.) I reread pages 180-183 several times. This is in the second period, when the husband and wife have one of their most agonizing discussions about whether it was right to have sent their son to a group home, and the ensuing guilt. And whether, if they had had the type of pre-birth testing for genetic abnormalities later to become available, they might have decided to abort the fetus. Whether the decision to abstain from attempting a third pregnancy was a joint decision, or a contentious issue that went away without ever being resolved. In this discussion, the sentiments of one parent are by no means identical to the other. The union survived even up to the end of the book, but the reader can feel the strain on the relationship to be much different from that which would ensue from quick, and therefore, comparatively minor events like losing a job or having a car stolen or suffering from a bout of appendicitis.During one all-nighter when Johanna by mutual agreement has the night off, Ian is attending to Walker and his needs (pages 225-226): “One evening I was so exhausted I fell down the stairs with Walker in my arms: my heel slipped on the lip of the step, I fell backwards, the familiar bolt of terror sucking my breath out of my throat, that thought, Walker, flashing through my whole body, whereupon I curled my arms around him and made a sled of myself, and we shot down, Walkie on my chest, until we bumped to a stop at the bottom. He laughed. Loved it. And so, I did too. He took me into darkness but he was often the way out of it as well.”Especially poignant are the reflections of the author as he inspects the storage spaces containing inventories of toys. Some of them are the normal ones that everyone buys from the toy store for normal kids. The other ones are the diagnostic and remedial toys that came from the psychologists and doctors trying to help Walker catch up to all the other kids, which he will never be able to do. Fine, Walker will not be able to say that two plus two equals four. Neither will het be able to do calculus nor write an essay about Hamlet, but what about basic human communication and empathy? At this juncture, I believe it was particularly appropriate when the author described his visits to Jean Vanier (the leader of L’Arche) in France, where he saw that a community of abundant communication can exist where verbal language is weak or fails. Maybe to rely only on verbal communication is too facile. What are humans communicating to each other when they look at each other with a glance of empathy, or laugh together, or sigh together? It is beyond the scope of mere words.As an example, at the group home where Walker lives, his friend Colin has died. ( “Friend,” in this context, means Colin is the boy who, when he noticed that Walker would obscure his (Colin's) view of a video game, would in a friendly way abstain from asking Walker to get out of the way. ) One may ask if Walker is cognizant of the reason for the sudden absence of Colin. And if so, what are the ways that Walker could communicate his feelings about Colin? After you read pages 249-250, see if you believe whether Walker misses his friend or not. Every year I read thousands of pages and forget thousands of pages, but I can't ever forget these 2 pages. The average reader's experience of living in a family with a disabled individual is minimal to non-existent. We see an occasional news story or short magazine article, but here is a full-length book that gives a comprehensive view. I still do not know how anyone could live through this. But the book starts to give at least some idea about what it is all about.I have wrestled with what it means to be a parent. It's true that an infant human needs proportionately longer parental intervention to avoid certain death (18 years?) compared to many other species. What parent hasn't rued the day when activities of procreation created a life-long commitment, with uncertain guarantees of good health? The author checks in on the thoughts of Darwin, which are currently much brought to bear on arguments about palliative care and the expense of caring for disabled persons. But wait, maybe Darwin is not saying the cruel things that we always assumed he did:(Page 285):“We should ... bear in mind that an animal possessing great size, strength, and ferocity, and which, like the gorilla, could defend itself from all enemies, would not perhaps have become social: and this would most effectually have checked the acquirement of the higher mental facilities, such as sympathy and the love of his fellows. Hence it might have been an immense advantage to man to have sprung from some comparatively weak creature.”It was a gripping book. Once I started it, it was a one-day read. No boredom was felt from the first page to the last.