I have just finished reading “
The Boy in the Moon” by Ian Brown. Ian is the father of Walker who was born with a genetic syndrome called CFC. I won’t begin to explain what that all entails, the book does that well enough. The book is about Ian’s journey as a parent of a child with severe health and development issues. Being a journalist and a seasoned writer gives Ian the
ability to write both from a very personal perspective whilst at the same time looking upon the matter from an objective distance.
Walker’s needs are very taxing on the family, emotionally, physically and financially. Ian descriptions of their struggles made me ache for him, his words bringing me into his tiredness and exhaustion. He shares about the dark times in his marriage and in his own private thought world. I appreciate such candour as often parents of special needs kids are so focussed on the positive, as this is how they cope with the life altering gift. But it does mean that others can get the impression that things are easier than they seem. I think I might sometimes fall into that trap in my blogging.
“The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.”
This quote from page 46 demonstrates that his book, although brutally honest, isn’t a pity-party, nor does it only focus on the struggles. His writing also invites the reader into those precious, glorious moments of connection with Walker, those moments that breathe life and purpose; and that inspire gratitude in one’s own life.
In addition to telling his story, he also shares his observations and critique of the medical system, genetics, government services, and society – obviously he is speaking from real-life experience, and unafraid to question the status quo. One interesting thought
“Until recently, no-one – certainly no part of the government-funding apparatus – was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until twenty years ago, children this medically complex didn’t exist. They didn’t survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level” page 95-96.
In seeking to understand his son better he explores all that genetics and medicine can give him. Whilst at the same time he is also trying to determine if Walker has a sense of self, grappling with what life Walker could live, what would give it meaning. A hard goal to achieve, especially Ian is an atheist, and many of the more spiritual explanations don’t connect with his world view. He does reach one profound conclusion on page 234
“The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest”
Ian often refers to his wife, but less often shares her thoughts and perspectives. He did quote her reaction to the occasion when, strongly encouraged by someone, she takes Walker to a Shaman. I love the way she reflects on the experience.
“It was a huge relief to me, “Johannah said. “Because for the first time, the only time, someone wasn’t trying to fix him. They were just describing him. There was no judgement or fear. It was just very accepting. And I do think it was a turning point for me. Instead of trying to fix Walker or make him better or diagnose him or see what was causing his state, it was just what and who he is. This is what he is doing. It wasn’t a triumph or tragedy. It just was.” (page 111)
I can connect to that sense of peace one gets when one sees one’s child for what he is: when the yearning for the next milestone has ceased, when you have stopped comparing him to your neighbour’s child, when you are no longer trying to make him something he is not.
Ian shares about joining an internet-based support group aka listserv, and his description of the experience made me laugh in that it was so familiar – the various types of people and responses. He spends time and energy visiting various families whose child has the same syndrome. He introduces us to these children and reflects on what it means for him and Walker. One belief held by some of the parents he meets is the notion that God has chosen to give this special child to this specific parent, that the child is some time of heavenly gift. I appreciate his honest reaction to this way of thinking:
“I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonising about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experiences into a dependable, reassuring stance. But the details of Walker’s life belied any certain path.” (pages 135-136)
I must confess, that even though I love Jesus and read the same bible as other Christians, I do not believe that God intentionally decides to inflict a chromosome disorder on a child, and then gives this child to a specific family as part of a greater, cosmic plan. Nothing in the life and person of Jesus teaches me that this is what I should expect from God. I am reading an interesting book on this topic and so will spare you a theological explanation here. But I must say, although thinking that God is all in control, like a giant puppet master, and that all that happens to us in life is God’s will may bring some comfort to some Christians, I believe it makes it really difficult for those who have experienced the rough side of our fallen world to have an intimate relationship with God. But more of that in another post.
My final comment on this book. When contemplating Walker’s care home, as well as his future, Johannah’s deep longing for him are expressed here: “As long as someone loves him every day” (page 184). I don’t think about Matt’s future that often, by future I mean what will happen to Matt when Lloyd and I have passed on. It is too scary, and as I don’t have much control over it from where I am now, I choose to leave that question in the future for now. But when my heart does wonder down that road, then Johannah’s words echo my deepest prayers for Matt – God, as long as someone loves him every day.
I would recommend this book to parents of children who have kids with special needs – the honest realistic reflection is so refreshing, and affirms you that you are not the only one struggling, and that you are not alone. I would also recommend this book to friends of families of children with special needs – it gives wonderful insight into a topic that is often avoided. Therapists, teachers, medical professionals who engage with children with special needs and their parents will also find this book helpful in developing insight and empathy.
