The Boy in the Moon
Ratings4
Average rating4.5
15
Ratings4
Average rating4.5
Ian Brown's son, Walker, was born with a genetic mutation so rare that doctors call it an orphan syndrome: at most, three hundred people around the world live with it. At thirteen, Walker is still in diapers: he is globally delayed, he can't speak, and he has to wear cuffs on both arms so he won't constantly hit himself. He will require constant care for the rest of his life. The boy in the moon tells the story of one frail boy and the tiny constellation of people who love and care for him. From this intimate perspective, Ian Brown opens out a profound meditation on what life is worth, and what it means for all of us.
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My oldest son has Autism. When he was diagnosed, he received preschool based therapy at a facility which changed our lives. At the school, there were dozens of children with Autism, global delays, and there were a few children who I would describe as profoundly disabled.
They self injured, they vocalized in chirps and growls, they had near constant immune system issues, they seemed to my untrained eye completely disconnected from the world I lived in. To a parent new to the journey of developmental difference, observing them and their caregivers was awe-inspiring.
The thing that I remember most about these children were their parents. They were so tired. We were all tired – sleep issues are so prevalent almost children with developmental difference, but these parents demonstrated a lack of sleep that visibly showed, that seemed to never resolve.
Despite these struggles, the parents never gave up. Their children made progress at a developmental pace I'd describe as glacial. They sat in on endless appointments, geneticists, orthopedists, OT, PT, all for a bit of progress so minute the parent of a neurotypical child would letter bomb Dr. Sears.
One child who my son schooled with had their speech services cut because they did not make demonstrable progress. Of all the indignities I've heard amongst my collected friends, “I'm sorry, our tax dollars are better spent on a child whose data will look better” trumps all.
So The Boy in the Moon struck home quite sharply not because I've lived this life, but I've witnessed this life. I've sat in waiting rooms with this life. I've had the life the author in dark moments would trade for without hesitation.
It's well written and pulls no punches. It also has a significant section about L'Arche, which is an incredible program for the care of adults with difficulties living on their own.
I picked up this book last year, but it took me a couple of restarts to make it through. Not because the quality of the content was poor, but because the book hit me so hard emotionally. Like Walker, my son Avery was born with CFC (Cardio-facio-cutaneous) Syndrome, which has left him disabled and developmentally delayed in a number of ways. And like the author and father of the book, Ian, I often struggle to find meaning in challenges life seems to so often present to my son.
The way that Mr. Brown speaks so frankly and openly about his life and his relationship with his son was extremely moving to me. Raising a child with a disability can cause your mind to run through the entire gamut of emotions, but we live in a society where it is often difficult to express those emotions without judgement. The most wonderful thing about this book is that it provides the perfect window into the life of a parent entrusted with the care of a child with a disability. The constant search for value and meaning in the daily struggle of care can be a difficult journey, but in between the difficult moments lie tiny nuggets of life lessons that are endlessly deep and profound.
I realize it is probably a bit self serving, but I would still urge everyone to take a look at this book and consider picking it up (the first few chapters are available on Amazon).
