Thursday, March 03, 2016

The Boy in the Moon: a father's journey to understand his extraordinary son

by Ian Brown

This book is incredibly moving and thought-provoking. I may have even teared up a bit.

The author (a journalist, I think) writes about his son, who has an extremely rare genetic disorder that renders him severely disabled and in need of constant attention and care. He needs to wear diapers, has to be feed through a tube into his stomach, and must wear protective cuffs so he won't constantly hit himself in the head. He is unable to communicate, and his mental capacity is all but impossible to determine. With such extreme physical and mental impairments, does he even know who his parents and sister are? What does "quality of life" mean for someone like him? Can it even be measured on a scale that's comprehensible to ordinary people? How can his needs be weighed against the needs of the rest of the family? The author grapples with these questions honestly and with sensitivity, finding no clear or easy answers.

Although the author's son has a very unusual and uncommon disorder, the issues explored in this book affect everyone. Each of us will face decisions about how to care for, and how to let go of, aging parents, spouses, loved ones. Anyone can suffer a catastrophic illness or injury that drastically alters quality of life and raises questions about end of life care and dying with dignity.

This book could go in the Top 20, maybe even Top 10. It's a solid recommendation for many audiences: top-notch writing, deeply emotional, realistic nonfiction.

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