Early yesterday morning, I ran in the Tar Heel 10 Miler road race on the streets of Chapel Hill and the campus of my alma mater, North Carolina. The chilly, dew-kissed April morning danced on my skin; centuries-old buildings, hot pink and white azaleas and blooming dogwoods provided the landscape. I jogged through the historic Gimghoul district, down streets I’d never visited as an undergrad, up steep hills on heavily trafficked roads and down a wooded lane past the character-rich Forest Theater. And, about an hour and a half after the starting horn sounded, I entered a sun-filled Kenan Stadium for one lap around the track before crossing the finish line – the 944th runner in the field to do so.
I didn’t come close to winning this race and never will – not in my short-distance runner’s body, and not as long as I’m dependent upon the joints I’ve all but ruined on the soccer field. Nevertheless, I experienced beautiful pockets of Chapel Hill for the first time. I got a great workout. I had fun. I had an excuse to spend the weekend with my best friend from college, who still lives near Chapel Hill. And I shaved three minutes off my per-mile pace time since my last race – a half marathon in December. Yes, 943 people beat me to the finish line – but I achieved every single one of my goals.
Batten disease is different. There is no margin for error, no success sweet enough to overcome the loss of children – something that happens everyday. I don’t do what I do – write this blog, run board meetings, pray, you name it – to finish in the middle of the pack. I don’t do it to feel good. It helps me believe, but it doesn’t feel really good yet, because we don’t have a cure. Sometimes, I get too caught up in the details – the mechanics – of what Taylor’s Tale is trying to do. When that happens, I call my parents and ask them what they’re up to. If I can, I’ll go see my sister – kiss her on the top of her head, ask her for a hug, take a walk with her, or snuggle on the couch to watch a movie. If I can’t see Taylor in person, I’ll ask my parents to hand her the phone. If she’s watching TV, I’m not apt to garner very much of her attention. I’ll get a ‘Hi Laura’ right when she takes the phone. If I’m lucky, I’ll also get a few other words before she hands the phone off to get back to her show. But it’s enough. In my world, being able to call my sister and ‘talk’ to her – even if it’s a one-sided conversation – is a blessing. I stopped taking more for granted a long time ago. No matter how I re-center myself, I always manage to do so, somehow.
Time wasn’t the most important element of my race yesterday. Crossing the finish line was enough. When it comes to Batten disease, though, time is everything. Every month that goes by without a cure, more children die. I’ve never stopped believing that we can cure this awful disease. I know we’ll cross the finish line someday. For the sake of all of the children who need our help NOW, though, my goal is to run FASTER. If I coast, they lose – and one day, I will lie awake in bed at night, wishing I could have one of those one-sided phone calls with my sister again.