Ernie's Reviews > The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son

The Boy in the Moon by Ian Brown
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May 19, 2011

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A writer describes the effects on his family and life when he and his wife have a child with a rare genetic disorder, cardiofaciocutaneous syndrome (CFC). The condition is so rare that only tens of individuals are known with the disorder in the 90s. HIs son is profoundly developmentally retarded. No speech. Cognition not expected to advance beyond the comparative age of 2 or 3. The physicians have difficulty diagnosising it. Since it is so rare, predictions based are effects in others are weak. It is genetic but not inherited; the cause is a mutation occuring during early embryonic development. Later in the book they describe studies to find the genes responsible and the mutations responsible. Rare conditions are poorly funded. Spontaneous mutations mean that every case is likely to be different, and therefore requires more testing.
The first part of the book describes the discovery of the problem and its effect on the family. They adapt. But it is a profound adaptation. The author does a wonderful job describing the combination of love for his son, guilt when he finds himself longing for a normal life, guilt wondering if he is doing enough, joy at simple communication and pleasures with his son and difficulties sharing him with outside facilities when the son becomes too much for he and his wife to care for.
The last part of the book is an exploration of the work of such handicapped people. He discovers different types of homes for the developmentally handicapped and discusses what it means to him as a caring parent. He discovers a community called "L'Arche" (French for Ark, as in Noah and the...). In this community, ... you will have to read it. He is a writer and describes it much better. But it is the most interesting aspect of the book. The philosophy of L'Arch and its founder, Jean Vanier centers around creation of a community rather than institutional care-taking. But what has the most profound effect on the writer of the book is to discover that the questions asked by the residents (they are not called patients)upon meeting someone new is, "Do you like me? Will you be my friend?"
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