I started The Boy in the Moon at what I believed was a disadvantage. I read the NY Times review before I did. I’m glad I didn’t let it disuade me. It’s certainly not that the review was “bad”. Quite the contrary, the overall was very positive. It’s just that the review didn’t move me to action, parts of the review made me believe that the author had totally detached himself from the story and other parts made me feel it was not going to be accessible…that it was a high brow literary work. I wasn’t sure I wanted to read a psudo third-person account of someone’s journey. I decided, no one should take just one opinion about a book and make a unilateral decision, so off I went, not honestly sure what to expect.
I am so very glad I did.
Chronicling the day to day with The Boy in the Moon
Walker Brown, is the son of Ian and Johanna Brown. Walker has a rare “orphan” genetic disorder, CFC (cardiofaciocutaneous syndrome). For those of you who may not be aware, orphan diseases are classified as such because they are so incredibly rare, research and treatment are almost never done. Ian Brown wastes no time in throwing us into life as he and his family have known it for Walker, for over 8 years at the time author, Ian Brown starts The Boy in the Moon and as he describes it:
For the first eight years of Walker’s life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.
Ian Brown chronicles this journey and it’s impact on him, his wife Johanna, their marriage, his daughter Hayley and the family as a whole. If you’ve had a child who came anywhere close to these issues, you’ll quite easily relate to the way Ian Brown describes his frustration with forgetting to clamp off the feeding tube before disconnecting it from Walker in the middle of the night. Or the unfixable stains on the rugs the formula caused. Or the self-injury Walker was always inflicting upon himself, which I could relate to as well from my many years of trying to keep Katherine from hurting herself. And just as many times, I couldn’t fathom what it must be like. A non-verbal child who could in no way make his basic needs or thoughts or desires known? A child who was unable to ambulate, that had to be transported by being carried up and down the stairs of their 3 story home? I have only known this challenge intermittently but I felt like I was in the middle of it, living it, while reading Ian Brown’s narration of events. Details the Brown’s daily life up to and including the decision to place Walker in the care of others are related to the reader in a very stark and tangible way.
Searching for others like The Boy in the Moon
The second part of The Boy in the Moon chronicles the search Ian Brown takes to look further into CFC and some of the other children who have this condition. He meets families and sees first hand what he’s known all along. No two children are alike, their experiences while they have common threads are anything but identical. The manner in which Ian Brown conveys the various thoughts, feelings, and internal debates it sets off are provoking; thoughts which transcend just being the parent of a child with special needs but rather what meaning can be derived from life such as Walker’s. The pilgrimage is almost a spiritual quest and yet you can sense that the spiritual is a realm Ian Brown does not have a comfort level with and that’s ok. I think that having a child with incredible special needs would make anyone who’s even gone through a small portion of what Ian Brown has would question any belief in a higher power, especially one that would allow a child to go through what Walker has and does. In reading about Ian Brown’s inner struggle I could feel my own discomfort and my own questions about all that Katherine goes through and struggles with. It was a process that was all at once uncomfortable and strangely cathartic.
Finding Meaning and Home For The Boy in the Moon
The third part of Ian Brown’s The Boy in the Moon chronicles his travels to find a place he could feel at peace calling home for Walker after he and Johanna were gone. He, like many parents, doesn’t want Walker to be the inheritance he leaves his daughter. He knows the toll it would take on her through his exploration of the toll it’s taken on him and his wife. I found the examination of various living facilities enlightening. I learned about homes that had only existed in my mind. L’Arche (after Noah’s ark), an international organization of communities for the intellectually disabled not only shows Ian Brown what is possible for Walker – having a long term home where he can be loved and accepted for who he is – but is the basis for his own quest to get a handle on what meaning Walker’s life has, extrapolated into what meaning does the life of the profoundly disabled hold.
Why you too should take the time to read The Boy in the Moon
The Boy in the Moon wasn’t the necessarily the easiest read and certainly it wasn’t all happiness, positivity and light. There are parts of this book that didn’t read easily for me, at times it seemed to struggle with transitions from one section to the next. There were other parts that were hard for me, personally, to read – it made me look at things I should spend more time looking at but are hard places to go. Through it all I found that the author, Ian Brown, his candor, bold and sometimes coarse language (which to me was not at all offensive but there were a few curse words tossed in there from time to time) made me feel like I had met him, his wife Johanna, his daughter Hayley and most importantly his son Walker and was taking this journey with them. Some of it completely new to me, some of it so familiar to me I hurt for the whole family.
It’s remarkable how candid Ian Brown is about each and every one of his struggles, and also some of the struggles his wife Johanna has. Some may be offended at my categorization of what the Brown’s go through as struggles. I would suggest that no matter how much you love your child, when you live with a child who has even half of what goes on with Walker that there are very real struggles. That when you have a child who you can no longer reasonably care for on a daily basis and you have to make the profoundly difficult decision that living somewhere other than at home is what is in everyone’s best interest – struggle doesn’t begin to accurately describe it.
I don’t think there are any pat answers and The Boy in the Moon doesn’t try to supply any. While Ian Brown asked the hard questions, he didn’t try to answer them for anyone but himself. Ian Brown acknowledges the difficulty at coming to any one answer, even personally. Despite the sometimes jumpy nature of some of the segues, it was well worth the read. I felt immersed into the Brown’s life, struggle and search and feel as I have gained so much from taking part in that journey with them. I think The Boy in the Moon will have a lasting impact on you too.