Wednesday, April 27, 2011

The Boy in the Moon, by Ian Brown

As a person with a ‘now’ lifelong neurological disability, I can relate to Ian Brown’s search for his son.  My disability is much different than Ian’s, but I can relate to how Ian Brown feels for his son.  In my case, my disability changed my life forever in middle life, but I had and lived a full life.  For Walker, he never had a chance to experience any part of a normal life, and deep down, it was Ian’s desire to try to draw his life out for him to live a normal life.  When a person has a disability, their world is a completely different world than anyone elses.  You are not in the ‘normal’ world anymore.  It’s so different.  Yet, if you think Walker’s world in this way, this is all that Ian knows.  He does not know life to be any different than the life he has lived so far.  I know Ian Brown knows this.  I base that upon my in-laws who have a son with Autism who is barely reachable.  He is happy.  It is the only life he knows.  Yet day to day, he lives his life and knows no other.  It is ‘his’ life, his world.  That is how I feel for Walker.  This ‘is’ his life as he knows it.  He has no loss of life as this is what it is.  It is just different than other peoples.  Walker doesn’t even realize it is different.  Life just is.  This is his every day.  With the severity of his disability, I think it is good he does not know any different.
I understand all of Ian’s intense research, going to meet with different doctors, specialists, and meeting with as many people as he knew that has/had a child like Walker.  I think it is a coping mechanism and also another search for answers to help, because I did the same thing when I was diagnosed with a very rare neurological disease that hits only 1 in 1 million people.  With very rare diseases, most all doctors are at a loss to help.  Like Ian said in the book, some doctors never heard of the disease he has.  When they know nothing of the disease (and I even experienced doctors leaving the room to look my disease up on the internet), you feel so empty.  Then you go about a search as Ian did, trying to find and get to the doctors who do know about it and sometimes it can be impossible.  When it comes to a disability, if it is the parent or the person afflicted, they/we are going to do whatever it is we can to find more answers.  There just ‘might’ be a glimmer of hope to help make the disease better by learning different treatments, etc.  For people who do not have a lifelong disability, this may be hard to understand unless you actually experience this.  Unless you are really in a world of Ian’s or have a disabled person in your family, you know how deep down how devastating it can be, yet it also puts a drive into you/Ian, to try to find a cure, and even a deeper drive to too reach his son, to find something to help him live a better life.
The decision to put him into a group home most likely still haunts Ian to this day, without him admitting so, but there comes a time where the parent does have to admit that they cannot help their child any longer like a home can.  To admit that is like giving in to defeat. 
I admire ALL that Ian and his wife have done for Walker.  They stuck together.  This story was very heart touching and true to life for myself.  I could relate to all that Ian wrote about, but in a different way, as this is a child and from the beginning of his life.
I really enjoyed this book as I related to most all of it.  At the end of the book, Ian wrote that it took him so long to write the book, but it was because he was living it first.  So true.  Such a devoted father!  Ian is a very lucky boy, even if he never understands it, you know he knows it.  This book was provided to me free of charge in exchange for a review by the Early Reviewers Program at
Laurie Carlson

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