Living in Park Slope requires a high tolerance for being surrounded by children in strollers, children in tricycles, and children who probably have a better vinyl collection than you will ever have. Sometimes though, there is a kid who is so absolutely ridiculous it stops you in your tracks.
A few weeks ago, I was coming home from dinner in Manhattan and as I walked down a residential street, I saw a father in front of his stoop raking leaves. He was joined by his two year old son, apparently decked out in an all Baby J Crew line of clothes, with a yellow rake of his own, with one hand leaning against an oak tree trying valiantly to help his dad. Just ridiculous.
This Park Slope moment kept rattling in my brain as I read Ian Brown’s memoir, “The Boy In The Moon.” Billed as, “a father’s journey to understand his extraordinary son,” Brown’s son, Walker, was born with cardiofaciocutaneous syndrome – a genetic mutation known as an orphan syndrome.
As Brown explains, the cardio is the ever-present heart issues people with CFC have, facio is for the facial malformations, and cutaneous is from the “many skin irregularities.” Walker is among 300 known CFC cases in the world. Even at the age of 13, he couldn’t speak. He receives his medicine and food through a g-tube, and has to be restrained from bashing his hands against his head. Developmentally, Walker will never progress from a toddler state of being.
The author is more than just the father, he is also a feature writer at Toronto’s The Globe and Mail. These dual roles are one of the things that make “The Boy In The Moon” the strong book that it is. With his perspective as a father and husband dealing with CFC, Brown gives us the parent’s perspective that a journalist or scientist might be less familiar with. As a professional journalist, it is his search for questions that brings Brown and the reader to a burgeoning CFC community and the scientists working to decode CFC and it’s possible connection to cancer.
It is Brown the father whose voice I enjoyed most. Here is a guy, who along with his wife, usually doesn’t get more than 4 hours of sleep two nights in a row as they raise Walker. We are there with them as they struggle to figure out what is ailing Walker – something that was noticeable from the moment of his birth but not diagnosed until later. Brown brings us into the doctors’ offices as they learn what their son will be and what it will require of them. As Walker ages, it almost feels like we are there with the author as he cares for his son, nudges him to sleep, calms him from his outbursts, and the parents find the proper schools for their unique child.
Eventually, there comes a point when the Browns can no longer handle their son. This opens a new chapter in their lives and the book as they begin the search for a place for Walker to live. More than just a place for him to spend his waking hours and sleep – they seek a home.
If there is one flaw in the book is an unfulfilled sense of foreshadowing. Maybe this is less on the writer and more on me the reader, but as I went along, it almost felt like the audience was being slowly, softly prepared for the horrible news that Walker dies or something else horrific. Instead, it goes unmet.
The best parts of “The Boy In The Moon” are when Brown takes on why the historical underpinnings of why our society fails the handicapped and the hidden impact this has on the ones who love them and, usually, are their caregivers. Brown doesn’t pull any punches and shares his darkest moments. Fleeting thoughts of what it would take to quietly end his and his son’s life and the ravaged state of his marriage are put on full display.
This honest gloom is offset by what Brown acknowledges might be nothing, but for him means so much – the language of clicks he and his son have which constitutes so much of the shared moments they’ve had and the joy that has come in their life. For Brown, Walker’s struggles will never end, but after reading this memoir, it is the joy of being able to step into Walker’s world that makes all the difference for Brown.