The boy in the moon is Brown’s son, who has an extremely rare genetic disease that has given him both mental and physical handicaps. CFC- cardiofaciocutaneous- syndrome is not a hereditary disease but one that randomly crops up, so the author and his wife had no inkling that their second child might not be like their first one.
cannot speak or even swallow (he is fed through a tube directly into his
stomach) or control his bladder or bowels, and requires constant care, which
his parents (both writers and so home a great deal of the time) and a nanny
provide for him at home for the first 11 years of his life. The hardest part of
dealing with him, however, is not the diapers or lifting a child growing into
his teens or the fact that they never get to sleep an entire night, but the
fact that Walker hits himself in
the head all the time. As one can guess, that’s agonizing to watch. And it
finally comes to a point where they just can’t do it by themselves anymore,
physically or emotionally; they have to place Walker
in a home.
The first part of the book is biographical:
and their history, what they did and how they did it. The second half is
spiritual and philosophical: what is the meaning of Walker’s
limited life? What is the meaning of anyone with a mental handicap? What do
they teach the rest of the population? The author gives us a history of how the
mentally handicapped and mentally ill have been treated in the past- for the
most part, horribly. He spends a good deal of time with the people of a group
of communities called L’Arche, founded by Vanier in France forty years ago and
extending into Canada and the USA now. In these small communities, the mentally
handicapped are treated as the norm. They and their care givers have meals together,
go out into the towns, and are all equals. It’s a fairly ideal situation, and there
is a twenty year waiting list for people to get into these communities. The
home that Walker is in isn’t quite
as good as L’Arche, but it’s pretty good. Brown also makes great efforts to
medically understand Walker’s
disease; he has genetic tests done to try and get a positive diagnosis of CFD
(he doesn’t) and an MRI to see what Walker’s
brain looks like. He goes from place to place, trying to find out how Walker
works, whether Walker has any sense
of self. He keeps hoping that there is some way to ‘fix’ Walker.
In the end, Brown really gets no answers.
has made his father into a different person that he was before- less selfish,
more attuned to others, more appreciative of his friends and family, and,
finally, a person who has to accept that Walker
cannot be fixed, he can only be loved for who he is. If he has a ‘purpose’,
other than to just live, if may be that.
The book is, frankly, pretty grim. No matter how much love there is, taking care of someone who is severely handicapped is hard work and it’s very hard on families. That they were able to keep
home for over 10 years is testament to their devotion. But despite its
grimness, the book is a well written meditation of what it means to have a
family member with a mental disability.