The Boy in the Moon, by Ian Brown (LentBooks 2010 #12)

Ian Brown is one of the many, many CBC journalists that I’ve had a little radio crush on over the years, although these days he works more in print media and I don’t get to hear his lovely mellow voice like I used to on Talking Books.  But even in print, that voice is there, vivid and warm and personal, in The Boy in the Moon, Brown’s memoir about raising a profoundly disabled child.

I don’t think I’ve ever read a book about disability that gives a more raw, honest portrait of the mixed emotions, the love, the frustration, and most of all the sheer mind-numbing exhaustion, that parents experience when caring for a child as severely compromised as Brown’s son Walker.  It’s all there — the physical restraint, the sleepless night, the strains on the parents’  marriage and on their other, non-disabled child, the gut-wrenching decision to eventually put Walker into care outside the home.  The Boy in the Moon is painful to read sometimes, but I found it impossible to put down.

Along with telling the story of his own family’s experience, Brown adds some of his journalistic background to the memoir mix.  He interviews other families whose children have been diagnosed with the same syndrome as Walker has; he talks to geneticists and learns about genetic disorders; he visits L’Arche communities in France and in Canada and interviews Jean Vanier in his quest to learn about models for how intellectually disabled people can live successful in the community without the strain destroying their families.  All of this is interesting, but I found myself most drawn in by the passages where Brown simply describes his own family’s experience and his own conflicted feelings about the child he loves, but who will always be a stranger to him.  I highly recommend this book, but not having had the experience of having a disabled child myself, I read about the experience as an outsider reading about an unfamiliar world.  I’d be most interested to know what parents with disabled children think about this book, which seems to me so honest it’s sometimes painful to read.


2 thoughts on “The Boy in the Moon, by Ian Brown (LentBooks 2010 #12)

  1. As the mother of a profoundly delayed and disabled child, coincidently the result of another rare genetic mutation, I found The Boy in the Moon to be my voice. It is often impossible to explain and obtain any degree of understanding about our daily life to family and friends that do not near live near us. I have purchased copies of The Boy in the Moon to help me explain and help them understand. I had one dear friend burst into tears reading the description of the trials trying to find the most effective drinking bottle, not to heavy when fluid filled yet enough to quench thurst, provide nutrition and easy enough to hold independently. She questioned me through her tears ‘is it really that hard’ I replied ‘Absolutely’.
    A fantastic heartfelt and informative book that I found very hard to out down.

  2. I was told about this book by a staff member at the genetics department for my son.. I feel for you so much and can understand some of your joy and pain. My son Teddy is 21 years old and is developmentally delayed.

    Since my son is now 21 years old I feel it is our mission in life is to find ways for family, friends and strangers to see how our special person lives. He has friends and loves many of the things they do.

    So recently, we made a facebook page for him so family members can see our world and his! We post movies that show what he does at school, daycare and with our family. We post the good, bad and add a twist of humor.

    I truly believe it is a way we can release some of the stress. Allows us to analyze situations.

    God Bless the Ipad and Ipod Touch. We never knew what Teddy did at school for over 18 years until the last 3 months. The teachers and aids make videos and photos using the ipod touch 4g! No more notes in books…Teddy had a great day. I see him doing activities (his version) like bowling, bocci, cooking and etc.
    I make videos and he share them with classmates, strangers and family members. The first time he has something to share and say!

    God gave us this child for a reason and I know he impacts so many lives daily.

    Ian my life is not as tough as yours….We all have to learn how to cope in different ways. Thank you sharing your lives!

    Teddy’s mom!

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