.The Boy in the Moon: A Father's Search for His Disabled Son.

Today as I was driving to school, listening to NPR, they were interviewing Ian Brown, author of the memoir The Boy in the Moon about his now fifteen-year-old son, Walker, who has an extremely rare genetic mutation called cardiofaciocutaneous syndrome (CFC).  There are thought to be only a little over a hundred people around the world who have this disease.

As he was describing the mutation and the rituals they had to undergo when Walker was living with them (he now lives in a home with other children) I was eager to read more.  Brown particularly questions, and struggles with the question, of what these children (most who cannot speak/understand language, eat whole food, or be potty-trained) give to society; how do they benefit from living?  This not only comes down to a money question since it obviously takes a great deal to keep them institutionalized; it also comes down to what are these people getting out of life other than pain and suffering?  Brown asserts that his son does have days of crying, but also days of laughter.  And he described his favorite picture of his son lying with his sister, Hayley as she read a Dr. Seuss book to him aloud.  Though he can't understand, Brown said that Walker enjoyed the rhythm of the story and the attention his sister was obviously giving him; he was experiencing joy from something so simple, something many of us would take from granted.  In this way, Brown says these children and adults have plenty to teach us!

Likewise, he acknowledged the argument that these children and adults will be unable to contribute or become part of the larger society.  He asserted that they have their own societies/communities that we have to be allowed into rather than the reverse.  Though they cannot speak/understand language, it seemed from his interview they can communicate somewhat, specifically with each other.  I was amazed when he told about his wife and daughter dropping off Walker at his school after having taken him home for a few days.  He described his son seeing two girls he had become friends with and pushing his mother and sister out the door, as if to say (in Brown's words), "Get the hell out of here, I've got things to do!"

I really recommend checking out this moving story.  You can read a four-page excerpt here, and listen to the interview here.