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Wednesday, June 20, 2007
Sometimes the Dominoes Fall
It's been a rough week or so by
all accounts. This whole experience has been a constant roller coaster ride. It's easy to have a "save the world"
attitude one minute and feelings of desperation and emotional exhaustion the next. And every time I hear myself say that I'm
"fine," I wonder if I am. Then I remind myself that I don't have this hateful disease. And then, I wonder if
having the disease or loving someone who does is worse. I know the answer. I know that I'm far luckier than my sister,
and besides, it's wrong for me to feel that my pain and suffering could ever equal hers. But I love her enough to make
it close.
I'd like to thank my good friend, Kirsten, for convincing me to run a marathon in Charlotte this
December and raise money for Batten Disease research. Assuming my ankles, knees and the rest of my various joints hold up,
I'm going to dedicate several months of training and the longest run of my life to T. What I didn't tell Kirsten is
that one night several weeks ago, I was running in our neighborhood at around 10 p.m. (and I wonder why I'm tired all
the time!), and in a singular moment of inspiration and runner's high, I had visions of crossing the country on foot as
a way to raise dollars. Thanks, Kirsten, for bringing me back down to Earth. 26.2 miles is a good place to start.
As for T, she's still chugging along. As the rest of us field bad phone calls and moments when we want to kick the wall,
she's singing along with her Hannah Montana and High School Musical CDs or chasing Sunshine around the
kitchen. She has a Brailler now, and she and Mom are learning Braille together.They're also having fun with
a borrowed set of Texture Dominoes. Mom's teaching T how to match up the different textures with the colors, and T's
teaching Mom how to play dominoes. :) That's how things go these days, after all. T is teaching all of us an awful lot.
10:25 pm est
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