Might as Well Keep Running

Yesterday afternoon, I drove to Davidson, NC, a quaint college town about 30 miles north of my home in south Charlotte, to take part in the second annual 24 Hours of Loopy on the town Green, an event to promote awareness of Batten disease and raise money for the Batten Disease Support & Research Association. When I arrived a few minutes after 2:30, a totally loopy, totally awesome ultra marathon runner named Jeff McGonnell had already been circling the patch of grass in front of the public library for close to 19 hours. Various others had come and gone – from serious runners in Jeff’s Davidson Area Running Team (DART) group to fun-loving 5-year-olds to walkers.

loopy costumeI slipped into the rotation a few minutes before 3 p.m. After my last race in April, I took it easy for most of May, and I didn’t expect to tally more than a couple of miles, maybe five or six at most, before finding a golf chair and kicking back to enjoy the live music. But I was having too much fun to stop at mile six. At mile seven, I picked up new garb (in return for making a donation, spectators could dress runners in crazy costumes). At mile 10, I realized I had enough time to run 3.1 more, even with a break for two oatmeal raisin cookies from the Soda Shop across Main Street. I hadn’t run more than eight miles since a 10-mile race on April 21. I hadn’t trained for a half marathon. I hadn’t eaten a pre-half marathon dinner the night before or half-marathon breakfast or lunch before leaving my house the day of (in fact, I’d inhaled two brownies on my way out the door). But I had blue skies overhead, a gentle breeze on my skin, live music on the course and a supportive crowd that included my parents and Taylor. I had pig ears on my head, a red boa around my neck and a grass skirt around my waist (what?! :)). I’d set out that day to run for Taylor. I still felt strong. Nothing hurt – too much. So I figured I might as well keep running.

Thirty minutes later, I finished my unofficial half marathon just as Jeff McGonnell began his final lap around the Green.

Some days, I want to quit fighting this fight. Just walk away. Some days, it just hurts too much. Some days, the hills are just too steep.

But somehow, I keep finding a way to shake those days off. I never stop hurting. I’ve never found flat ground. But I’ve never stopped fighting.

I entered this race. I’ve got some momentum. It doesn’t always feel good. I don’t get to stop and rest whenever I choose. But I’ve made progress. I hurt, but not so much that I can’t run. So I might as well keep running.

Laura and Taylor after Loopy

I’ll Run. I’ll Believe.

Today is June 1, 2012.

It’s been 2,139 days since I learned about a devastating disease for the first time – in the very worst way.

It’s a day that marks the end of school, maybe forever, for my little sister.

It’s the first day of International Batten Disease Awareness Weekend.

It’s the first of three more days to believe.

In a few minutes, Jeff McGonnell, an ultra marathon runner from Davidson, NC, will begin his second annual “Loopy for a Cause” run around the Davidson town Green. He’ll run through the night and tomorrow morning, and when I arrive after lunch to join him for the afternoon stint, he’ll still be running. In all, Jeff will run for 24 hours. Last year, he ran almost 90 miles in support of the fight against Batten disease and children like my sister, Taylor (Jeff runs for Brandon and Jeremy Hawkins, who are friends of his son and have juvenile Batten disease).

In 24 hours, Jeff will say hello to a golf chair and a Gatorade, and the loopiness will end. In 48 hours, Batten Disease Awareness Weekend will come to a close. But our fight will be far from over.

Another 2,139 days from now, I’ll still be fighting like hell.

One day, I hope to use this space to tell you we’ve beat the damn thing – or at least knocked it down.

Until then, I’ll run. I’ll believe.

Note: I’m scheduled to run with Jeff from 3-4 p.m. on Saturday, June 2, but you can come out and support “Loopy for a Cause” anytime between 6 p.m. tonight and 8 p.m. tomorrow (the event will continue for two hours after the conclusion of the run). Click here to learn more.

Tater Tots and Camaros

ourboys 10K 2012Congratulations to Chris Hawkins, the father of two boys fighting juvenile Batten disease, and Jeff McGonnell and Andy Brown, who helped Chris pull off his annual “ourboys” race north of Charlotte this morning in support of the Batten Disease Support & Research Association (BDSRA). I traveled to Harris Road Middle School in Concord to run the 10K, a new option this year in addition to the traditional ourboys 5K.

I broke just about every pre-race rule this time, gorging on tater tots (yum!) at a burger place last night, staying up past midnight and stealing precious minutes of sleep this morning, which meant I ate breakfast just an hour before the start of the race. I didn’t warm up, because catching up with friends at the start line (thanks for coming out, Jill and Matt!) was more fun.

In any case, I went home with a first place medal, winning the 30-34 age group with a time of 48:59 (7:54/mile pace) – good for a new PR for the 10K. I may need to make tater tots part of my pre-race ritual! :)

I rarely stick around for awards presentations, but I was one of the last to leave today after getting my medal. Before I walked to my car in the near-empty lot, I spent some time with Brandon and Jeremy Hawkins, the guests of honor.

At 6’2″, Brandon towers over me. He’s headed to high school this fall. When Chris and Wendy Hawkins first heard the words “Batten disease” in 2006, Brandon and Taylor shared the same neurologist. Doctors diagnosed just weeks apart.

Jeremy is a social butterfly; he kept people company while they signed a large photo of the boys or waited for their custom Braille bookmarks, which Brandon created on his Brailler. Jeremy will start middle school in August.

I’ve watched these kids grow up over the past six years; I’ve watched Batten disease steal bits and pieces of them, but I’ve also watched them find joy in the simple things, like their ride in a cherry-red Camaro along the 5K course this morning. Taylor has that gift, too.

To learn more about Brandon and Jeremy or the ourboys race founded in their honor, visit www.ourboysjourney.com.

Camaro