The Boy in the Moon by Ian Brown

A sweet, sad and ultimately very thought provoking memoir written by the father of a severely disabled boy.  Walker Brown has a genetic mutation resulting in a syndrome that only about 100 people on the planet have.  Walker cannot speak, does not eat food and is fed through a G tube, wears diapers and must wear protective gear as he constantly hits himself and beats his head into the wall.  He is very small for his age and cannot communicate through any discernible means.

Ian, his wife Johanna, and the older sister Hayley spend 13 years caring for Walker round the clock until the parents finally find a suitable group home for him.  Ian then embarks on a journey to discover what, if anything, his son's life means to him, to the community and to humanity.  Surely there must be some answer as to what his life means?

The author travels around Canada and the US meeting other families with children that have this syndrome. He travels to California to meet the geneticists who first confirmed this condition and understand how a mutation on a gene can occur to create the condition.  He goes to France to meet advocates for the disabled, philosophers of disability studies, and to visit communities of severely disabled.   He looks at his own heart and mind and reactions to people like Walker and he takes a cursory look at how the severely disabled have been treated in the Western world throughout history.

I was fascinated by the picture he painted of his life, his marriage and his unending love for his son.  He thoroughly examines all the ethics at work in studying genes that produce disabled humans, the ethics of how we treat the least of all in our care and the philosophies behind how to treat these children.  It was all wonderfully enlightening.  A fascinating look at people who we don't like looking at or even being around.

I am humbled by the questions Mr. Brown raises and by his own love for a child who most of society will always see as lesser. I really understood the love he described for his son, and his own interest and passion for helping and understanding the disabled helped me understand a bit more about being a parent.

If you are interested in my copy of this book please let me know and I will pass it along.