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Dec
01

The Boy in the Moon

Peter Today’s Globe and Mail features the first of the three-part personal story by columnist Ian Brown about his 11-year-old son Walker: The Boy in the Moon. Walker has a rare genetic condition called CFC, which makes our life with Jon looks like a walk in the park.

That said, Ian Brown much of the big picture echoes with our experiences. A couple of quotes that struck me:

For eight years, every night is the same. The same routine of countless details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem longer, until afterward, when because of the routine the years seem to have evaporated.

and, something that readers of this blog should bear in mind when reading any of my missives:

This isn’t a list of complaints. There’s no point to complaining. As the mother of another CFC child once told me, “You do what you have to do.” If anything, that’s the easy part.

His description of the fights over night-duty between he and his wife, both desperately sleep deprived, ring a bell (though I daresay Laura is more forgiving—or maybe it’s just a lack of anvils at hand).

The one sentence that was totally out of my experience and knowledge was:

The house was a well-organized nightmare. You couldn’t survive as the parent of a handicapped child if you weren’t organized…

I hate to contradict, but our house is just the nightmare part.

1 comment

  1. Peter & Laura says:

    PeterLaura We’re shocked and honoured to discover that we’ve been linked to in The Globe and Mail series “The Boy in the Moon” about Harper Brown by Ian Brown. So, a quick roundup for anyone who cares to partake of our navel-gazing, and the bellybutton-lint treasures within.

    Our son Jonathan was born with cerebral palsy due to lack of oxygen for ten minutes sometime around birth. We didn’t know about it until he was six months old, when all hell broke loose.

    Cerebral palsy, as everyone knows (just nod your head), is a nice catch-all term for any sort of brain damage around the time of birth that lead to physical impairment, or more. Every case is different. In Jon’s case, the damage is at the centre of his brain, where all of the wiring starts to bundle up to head down the spinal cord to chat with the rest of the body, and other wiring is just passing through to connect to other parts of the brain. Very little “gray matter”–Jon’s brain cells–got damaged, but a lot of the wiring did, which is just as important.

    Jon can’t walk, but he can stand with support. He gets around outside and at school by wheelchair, at home by wheelchair, stepping with parents and crawling. One of his hands is pretty spastic, so it’s hard to use both hands together for anything.

    He had very little vision for the first 18 months of his life, at which time the visual part of his brain started to function, having missed the key development period that most of us take for granted. He’s making great strides in his vision to get back what he can.

    Jon is developmentally delayed. Some of this is due to his visual and physical disabilities, and some of it’s the rest of him. He’s got a psychological scatter, meaning that parts of his mind are three-years-old, and parts are an eleven-year old pre-teen. Sometimes that means the delight of a three-year old at a joke only an older kid might understand, sometimes it means a tantrum with the hormonal rage and strength of an eleven year-old.

    Jon is addicted to The Weather Network, Wii Sports, and currently, The Wonder Pets. His favourite movies are A Bug’s Life, My Neighbour Totoro, and The Iron Giant. Jon is a big fan of music, and has an iPod loaded will all kinds of musical genres, and will often exclaim “Let’s put that on my iPod!”. He types journal entries that are often moved to this blog. Jon’s loves food from pretty much any nation, but particularly Indian, Greek, and Chinese. He prefers savoury over sweet (ie chips over chocolate or candy). Like Walker Brown, Jon does MEDEK physiotherapy daily. And he’s had some interesting Halloween costumes, too.

    We, his parents, are freelancers (web design, illustration and other creative stuff) who have made Jon our priority over his eleven years. The blog was created primarily for family and friends so that we could stop trying to remember who we’ve told news to and who we haven’t. We try to post other things that interest us too, be they silly or intriguing, just to keep some balance. We so desperately would like some balance.

    So, welcome. Here’s the blog’s front page.

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