The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son
This is a book about parenting a child with an extremely rare disability, written from the father's perspective. It's a book about the realities of such parenting, for example, about how for the parents of some children, the sleepless nights of babyhood aren't something that the child and family grow out of of but rather just a part of daily parenting, year in and year out. It's a book about the difficulties of finding options for child care and the emotional dilemma of choosing to care of a special needs child at home, or having the child live in residence, if that's even an option at all. In Ian Brown's boy's case, it did become an option after many years on a waiting list, and seems to have been the best option for Walker, the boy in question in this book.The first part of this book is mostly about the reality of having parented Walker full-time (two parents and a daytime nanny) for, I believe 15 years or so, until Walker found a spot in a home with full-time caregivers and other teens with special needs like him. Then, the second part is more about a quest for information and meaning once Walker no longer lives at home. The author does this by meeting other kids with CFC (the extremely rare disorder his son has), their families, genetics researchers who work at identifying CFC, and adults living with disabilities and their care-givers in l'Arche communities in Montreal and France. This part is both pragmatic -- how will Walker live as an adult, how will he be cared for if his parents are no longer around? -- and philosophical -- what is the contribution of Walker to the world? why are there people with such severe disabilities and what is their place in society? It's about the inherent value of being human and of simply being. One aspect that I found lacking in this memoir was more details about the other members of the family, the author's wife and daughter. They are ever present in the background, as they must be, in order for the author to tell what he is telling -- his experience of parenting his son. And I get that that's what he's focusing on -- parenting his son, not a general family memoir. And I get that he can't do it without referring generally to the family setting. But the effect on me as a reader was to just have my curiosity piqued about his marriage, his wife's experience parenting Walker (in what ways was it exactly like his, in what ways did it differ?) and especially his daughter's childhood experience with her parents being consumed by her brother's needs. I would have liked to get a bigger, better picture of the overall family life. This was a thought-provoking and informative memoir. Well done.