The Boy in the Moon

"In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful - not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and even more interesting life, but I can also return to live with Walker, as Walker lives - slowly, and without much of an agenda beyond merely being himself." -p.270

My mother, who inhales books, reccommended this story to me, and even though it was deeply painful to read at times, I believe it's a story that every special education teacher, and furthermore, every person in general, needs to read.  This is the true story about a father and his struggles to properly care for his son Walker, who was born with a rare genetic disorder that causes profound developmental delays: Walker cannot eat on his own, talk, walk, and often hits himself.  This book encompasses the notion of parents as ordinary people being put in extraordinary circumstances.

The book opens with the narrator and writer of this book, Ian Brown, being woken up in the middle of the night to sounds of his son Walker grunting and hitting himself.  The only way to console Walker during these times is bringing him to the father's bed and feeding him.  This is more complicated than it sounds though, because Walker has difficulty swallowing and cannot eat solid food; Brown has to administer food to Walker through an IV pump to a valve in his stromach.  Brown goes into the intricate details he must remember when caring for Walker, but also the questions that run through his head.  What will happen when Walker is twenty and he is sixty, and Walker still needs his diaper changed?  How will he be able to stop Walker from hitting himself when Walker grows stronger than him?  What is the value of human life is Walker is so dependent on everyone's care for his survival?  With all these details to remember with fatal consequences if one mistake is made, as well as all these unanswered pressing questions, Brown paints a picture that I was not even aware of before.

For the Brown family, refuge is sought in an assisted living place for other individuals with severe disabilities.  The parents experience much pain in realizing that they cannot care for their child as well as this institution can; I'm sure that it is especially painful experience for a parent not being able to provide the best environment for their child.  However, Brown finds great joy in knowing that Walker is able to blossom and thrive in a community of others just like him.  I think I've done enough of spoiling the ending-the rest you will have to read!