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Saturday, May 17, 2014

If you want to know more about life with Cooper (a book review)

I stumbled upon a book that, when I was reading the synopsis, seemed to mirror our life with Cooper.  His son also has a rare genetic disorder and has many medical and developmental hardships because of it.  It's not exactly the same; their child, Walker, is in some ways more advance and in some ways worse off than Cooper, but the experience is close enough.  In almost every chapter I've read, I've found myself close to tears and I understand exactly what their family is going through.  Anyway, this part really spoke to me today, so I decided to share.  Their son, like Cooper, doesn't talk.  He's much older than Cooper, but is at a much lower level, developmentally.  The author, Ian Brown, spends a lot of time contemplating exactly what it is that goes on inside his son's head.  I totally get that.

"[This] reminds me of a poem I once read in a magazine, by Mary Jo Salter:

None of us remembers these, the days
When passing strangers adored us at first sight
Just for living, or for rolling down the street.
Praised all our given names, begged us to smile.
You, too, in a little while, my darling,
Will have lost all this, 
asked for a kiss will give one,
And learn how love dooms one to earn love
Once we can speak of it.

My boy Walker has no worries there.  He never asks, yet is loved by many.  But I doubt it feels effortless to him.

'I hear parents of other handicapped kids saying all the time, "I wouldn't change my child," Johanna said one night as we were lying in bed, talking as we fell asleep. "They say, 'I wouldn't change him for anything.'  But I would.  I would trade Walker, if I could push a button, for the most ordinary kid who got Cs in school.  I would trade him in an instant.  I wouldn't trade him for my sake, for our sake.  But I would trade for his sake.  I think Walker has a very, very hard life.'"

I was literally yelling, "Yes" at this.  I've talked about similar things before here and here , but I especially loved the poem.  Cooper is so loved and so adored by so many people.  But for Cooper's sake, I would trade all of that for the most typical, average child in the world.  Anyway, the book is called The Boy in the Moon: A Father's Journey to Understand his Extraordinary Son.  Read it.  It's great.

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