By Laura Edwards

On Saturday, I ran the Tar Heel 10 Miler in Taylor’s honor for the third consecutive year.

I awoke to the sound of my iPhone alarm and my friend’s guest room clock playing a heinous duet – I’ve never been able to bring myself to trust a single alarm to do the job pre-dawn – before 5 a.m. I dressed by the light of a single lamp and inked my sister’s name in block letters on my left arm with a purple marker, packed for the occasion. I ate my traditional pre-race breakfast – a bagel with cream cheese and a fruit smoothie – in the dark, silent kitchen. I swung my Explorer’s headlights out onto Orange County’s rural roads before 6 and drove about 30 minutes from my friend’s home in Hillsborough, NC to a parking lot tucked beneath the watchful gaze of the Dean Smith Center and the Kenan-Flagler Business School on the campus of my alma mater, the University of North Carolina. I checked and re-checked my pack for my license, credit cards, health insurance card (it’s never a stretch to assume I’ll get injured), car keys and sport jelly beans. Satisfied, I began the 10-minute walk to Kenan Stadium to join 2,734 other runners for the 7:30 a.m. start, led by 2012 U.S. Marathon Olympic Trials champion Meb Keflezighi.

When the gun sounded, I inched my way around the stadium track amidst the crush of bodies. As soon as I reached the tunnel leading out of the stadium, I took off.

Around mile three, I got awful cramps (I never get cramps after three miles). The course seemed hillier than usual. I wondered if the other runners nearby could hear my breathing. But I kept going.

Over the first five miles, I recorded a 7:50/mile pace. I knew that if I kept it up, I’d smash my personal record (PR) for 10 miles – 1:25:27, recorded in the 2011 Tar Heel 10 Miler – and my previous 10-mile race time – 1:26:10, recorded in the Charlotte 10 Miler in February of this year. And oddly – though physiologically I’m better suited to sprinting – I tend to finish distance races much more strongly than I start them.

Around mile seven, things got a little uglier. My bum ankle (sprained about six weeks earlier and never fully healed) complained. My hamstrings and quads screamed. My lungs burned. I cursed myself for not getting more sleep (I didn’t turn out the lights till after 1 a.m.). And the notorious Laurel Hill – a 0.8 mile climb near the very end of the course that is so punishing, it gets its own separate timing mats at the bottom and top (because scaling Laurel Hill quickly warrants serious bragging rights) – still loomed.

When the first Laurel Hill timing mat came into my field of view, I think I audibly groaned. I wanted to walk. Normally I can run 10 miles (and farther) non-stop without any issues, but I’d really pushed myself for the first eight-odd miles of the race, and I could feel the effects.

At that very moment, I glanced down at my feet; as my eyes traveled downward, I happened to see the message inked on my arm: “4 TAYLOR.”

I churned my legs and arms up that hill. I ran it a good bit more slowly than last year, but I MADE IT. And soon enough, mile marker nine came into view. The end was near! I experienced a wave of emotion at that moment – relief that my exhausted body would soon have water and a cool metal stadium bench, and disappointment that my favorite race in the whole world – and the high I get from running for a cause in which I so deeply believe and for a little girl I love so much, would soon come to an end.

I ran the final mile in 6:28 – my fastest of the entire race.

When I approached Kenan Stadium, I slowed long enough to stuff my sport beans safely into my pack and remove my hat so I wouldn’t lose either during my customary dash to the finish line. As I burst through the tunnel and into the sunlight that soaked the stadium, I broke into a full-on sprint. All of the pain in my muscles was gone, and I was no longer tired. At that very moment, I felt as though I could run another 100 miles.

One hour, 25 minutes and 34 seconds after crossing the start line, I crossed the finish line. I missed my PR by a mere seven seconds – amazing considering the length of the race. I briefly regretted the precious wasted seconds outside the tunnel just before the end of the race, when I slowed to take off my hat and put my sport beans back in my pack.

And then, just as quickly, I dismissed the thought.

I finished 722nd out of 2,735 overall (men and women), putting me in the top 26 percent of the field. Yes – I came agonizingly close to setting a new PR – but I had a fantastic time missing it, raised awareness of Batten disease and honored my little sister, who once told me she dreamed of walking that campus as a student someday.

God built me like a sprinter, but the fight against Batten disease is a long and difficult race. Outside of my finish line dashes, I’ll never stand out in a distance race field, but if my times show anything at all, they show I’m consistent. And I’ll never, ever stop fighting this fight. I’m in it for the long haul, no matter how many Laurel Hills we face.

To honor Taylor and support the fight against Batten disease, I’ll make a donation to Taylor’s Tale’s Miles to a Miracle campaign. Please consider making a gift, too! Click here to visit my page; scroll to the ‘Support My Cause’ section at the bottom to donate. Thank you for your support!

Tar Heel 10 Miler 2012 stadium finish


By Laura Edwards

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.

A Child Shall Teach Us

By Laura Edwards

Every week, I read Sports Illustrated (SI) cover to cover. On Thursdays, I come home from work and wager a silent guess on the star of the new cover – be it athlete, coach or history-laden venue – before I open the mailbox. To me, it’s a consistent example of great journalism. For a long time, I dreamed about becoming a writer there and even worked for them during my senior year of college (I was in a marketing/public relations role and ultimately ended up making that my career, though I moonlight as a freelance writer).

One of my favorite pages in each issue is the last – the permanent home of the column “Point After.” I have so much respect for this feature, and the topics are so regularly memorable, that I put considerable effort into pitching Taylor’s 5K prowess as a “Point After” story to SI.
Chris Ballard wrote the Sept. 21 column. Entitled “A Child Shall Draft Them,” it chronicled a Thursday afternoon fantasy football league draft held by “a horde of seven-, eight- and nine-year-olds on the modest living room floor” of a California suburbia family.
Fantasy football is a mystery to me of all people – the girl who, from the last week of August through the first week of February, keeps football on in the house all day long on Saturdays and Sundays and Monday and Thursday nights. I just don’t get it – I love real football. Maybe I’ll jump on the bandwagon one day; perhaps I’m just one of those people who will always be the late adopter. After all, I was probably the next-to-last 20-something walking the face of the planet to join Facebook (the last being my husband, who vows never to do so), and even then only after a good friend and fellow Taylor’s Tale supporter convinced me of the social networking site’s ability to promote our cause.
Perhaps that’s exactly why Ballard’s column struck a chord with me: because it was really about anything but fantasy football. For as the narrative went on, the conversation of the adolescents gathered on the living room floor for the Aptos Amateur Fantasy Football League’s first draft gradually drifted away – to baseball and soccer practices and comic books and finally, after the draft had ended and the drafters’ dads had gathered around the TV for the NFL season opener, to the wild world out there, “matched up five-on-five and playing touch football in the afternoon sun.”
As life rushes by, I fill my days with brochure copy and press releases and emails and photo shoots and meetings, my nights with more emails and more writing and more meetings. My days are about my own livelihood; my nights are about my sister’s. There’s seemingly never enough time in the day, to the extent that I often forget to watch the sunset – or pass it by without really seeing it. I’ll always have my love for football, but I rarely watch a game without the company of my laptop. An hour becomes just another opportunity to cross tasks off a to-do list; the gift of another day becomes, well, just another day.
For most adults, life simply moves too fast most of the time. In my world, the passage of time is my enemy; my sister has a degenerative disease, and as long as we’re searching for the cure that could save her life, each day is so precious that a part of me dreads the setting of the sun.

That’s what’s so amazing about Taylor, though. The disease marches on, and yet she hasn’t surrendered; I don’t believe for one second that she ever will – at least not in spirit. I called her from the car on my way to the office this morning. My mind already racing with the slate of tasks on hand for the day, my attention was initially only half hers. Taylor, though, drew me in with that way she has as she told me the story of how her dog, Sunny, had cornered a box turtle in the backyard early in the morning. My parents, after rescuing the bewildered turtle from its fluffy white captor, placed it in a shoe box and left it on the kitchen table under T’s watch while they figured out what to do with it. T quickly took to the turtle; when we were on the phone, she affectionately called it “Boxy.” And so went just another morning for T: a day full of “wild possibility.”
“After all,” asks Ballard, “what’s so wrong with wild possibility?” Unpredictability (Who knew my parents’ backyard harbored box turtles?) is what makes life so beautiful. For those kids on their fantasy draft day, wild possibility meant the hapless Oakland Raiders could be capable of winning the Super Bowl. For T, wild possibility means driving a pink convertible and running out onto the field at UNC’s Kenan Stadium as a Tar Heel cheerleader. For me, it means giving her a chance.
Many thanks to Chris Ballard and SI for an unexpected source of inspiration – for reminding me of the beauty of “wild possibility.” Click here to read Ballard’s column referenced above.