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.