Review: The Boy In The Moon

BOOK BY: IAN BROWN / THE BOY IN THE MOON: A FATHER’S SEARCH FOR HIS DISABLED SON / VINTAGE CANADA / 288 PGS / $21.00

Finding out something isn’t right with your baby is every parent’s worst nightmare. I was 37 when I became pregnant with my first child and was thrilled about the pregnancy. That is until I went to my first OBGYN appointment and my doctor said, “You realize you’re a high-risk pregnancy because of your age, right? We’ll do all the necessary testing.”

My first trimester prescreening test for Down Syndrome and Trisomy 18 came back positive. My husband and I were devastated. My doctor wanted me to do more testing and to see a genetic counsellor. I agreed. Ironically, it was the genetic counsellor and other women with similar test results that convinced me that mistakes are made and that my result was not, in fact, a diagnosis.

Although the possibility that something might be wrong with my baby did burden my thoughts, I decided against any further testing. My daughter was born big, beautiful, and healthy. But would I have loved my baby if she’d been born differently? Absolutely. But the thought of raising a child with special needs still frightened me. What made it worse was that I’ve always considered myself a non-judgmental person, accepting of people’s differences.

Award-winning Globe & Mail writer Ian Brown’s book The Boy in the Moon is a brutally honest, incredibly touching and thought-provoking account of his life with Walker, his severely disabled son. Reading it made me hang my head in shame for reacting the way I did to the results of a prescreening test. In fact, after reading what Brown, his wife, his daughter Hayley, and the community of Walker’s caregivers have faced and continue to face daily, I feel I have no right to complain about the slightest challenges I face as a parent – such as one too many sleepless nights and trying to feed a picky eater.

Brown knew something was “different” about his son as soon as he entered this world. His skin was jaundiced, his lungs hadn’t opened well, so he was given forced oxygen. A flock of wild, curly hair sat atop his oblong-shaped head. He could only open one eye and one of his testicles hadn’t descended. He refused his mother’s breast on alternate feeds and when he did manage to get some milk down, he threw it back up.

The list of further medical observations Walker’s pediatrician made about him on his first visit confirmed that something was off. It would take another seven months for Walker to be finally diagnosed with cardiofaciocutaneous (CFC) syndrome, a rare genetic mutation with only one hundred or so confirmed cases around the world. Although the spectrum of CFC syndrome includes various diagnoses and symptoms, Walker’s was one of the most severe. At the age of 13, Walker’s cognitive abilities were similar to a child somewhere between the ages of 18 months and two years. He was fed by a gastric feeding tube, wore diapers, constantly hit himself and had frequent seizures. As he grew older, his deformities became more noticeable.

Despite the endless limitations and challenges that Walker’s existence brought to Brown’s life — testing his marriage, his love as a parent, his financial stability, his faith in the medical world, and his growing disappointment in lack of government support — he never stopped trying to get through to his “strange and limited boy,” to protect him, and to bring him the best quality of life even when they could no longer care for him at home. Faced with the guilt of having to put Walker in a home, he set out on a personal journey to find other “Walkers” in the world. He sought out places such as L’Arche, a network of homes and communities founded by radical thinker Jean Vanier, where persons with disabilities live comfortably and happily with staff and volunteers.

Sometimes Brown’s raw and vivid details (excerpted from his personal journals) of the daily struggles of raising Walker are absolutely heartbreaking. Especially painful are Brown’s admissions of having thoughts like suicide fantasies for himself and Walker. But mostly, Brown’s courageous parenting and unconditional love for his “broken boy,” and his unrelenting efforts as a journalist to search for the true meaning of his son’s life is extraordinary and almost humanly impossible. Parent or not, this book is a must read for everyone.