This week I finished the book The Boy in the Moon by Ian Brown.
I loved this amazing account of Ian and his son Walker.
Walker has CFC Syndrome which has left him severely disabled. Walker is mobile but does not speak; he intentionally hurts himself, has facial dysmorphia, leaving him with unusual facial features. He is unable to swallow food therefor he is fed via a tube in his stomach. He is incontinent and needs diapering. He requires 24 hour care and lived at home with his family until he was 11 years old, then moved into a group home.
The following is an example of what I loved about this book
Ian Brown met with a developmental paediatrician … he told the pediatrician that the family was planning to take Walker to a cottage on a remote quiet island, stating that Walker loves it there, it seems to calm him. He wondered if he could ever explain that to Walker.
Dr Wang comments
“
not rationally but it seems that Walker already understands this.”
He goes on to say
“
The Buddhists say the way to enlightenment, to pure being, is by getting your mind out of the way. I'm not trying to be trite, but Walker already knows how to do that. He is pure being. He may be developmental delayed, or moderately retarded, but in that way he is already miles ahead of us.”
What Ian writes
“
This was the first time someone suggested that Walker had a gift the rest of us didn't.”
The group home is working out well for Walker. He has made friends. His father speaks of his caregivers and how they are all different but each one brings something special to Walker and of course he brings something special to each of them.
Parents of disabled children obviously worry about what will happen to these children when they are gone hence the reason for finding a home for Walker, a place where he will have an identity and a place where he will be loved.
This book moved me in so many ways.
I have had the pleasure and honour of working with a severely disabled and medically fragile young girl. I was able to see the love and commitment of her family, witness the concerns about the future. I fell in love with this girl very quickly, my time with her has ended due to the family moving away. I miss her very much. Soon I will begin a new journey as part of a team with a young disabled man who requires 24 hour care.
How timely this book was for me.
