Digging Deep

Published: April 12, 2011 ~ 1

By Laura Edwards

I managed this self-portrait before dawn
the morning of the race.

As promised, following are my results from the 2011 Tar Heel 10 Miler, run on the campus of UNC and the streets of Chapel Hill on a misty Saturday morning before the sun ever broke through the clouds.

Time: 1:25:27
Pace: 8:35/mile
Laurel Hill time: 7:35
Place: 734 out of 2,189 overall; 267 out of 1,252 females; 60 out of 200 females ages 25-29

I began the race on Stadium Drive with a nasty head cold, an injured Achilles (pulled in a soccer game two days prior), and maybe an hour of sleep (worried I’d sleep through my 5 a.m. alarm, I never quite made it to dreamland).

Around mile marker two, I felt a burning sensation in the ball of my left foot. It never went away, forcing me to change the way I run (more naturally a sprinter than a distance runner, I run entire road races on my toes). Hours later, I’d discover the source of the pain – an enormous blood blister.

Near mile marker five, the pain in my Achilles relented, blissfully replaced by a runner’s high.

A few miles later, I called my parents from the course just to check in. Their voices gave me the boost I’d need just moments later.

Soon after we said goodbye, I reached Laurel Hill – the most difficult part of the race, featuring a 200-foot vertical climb over the course of a mile. By then, my lack of sleep had caught up with me. But when I crossed the first timing mat, I pushed myself, getting as close to a sprint as my body permitted. Each time my ruined feet hit the pavement, I heard my little sister’s laugh, and I dug deeper. I crossed the second timing mat at the top of Laurel Hill seven minutes and 35 seconds after crossing the first – meaning I’d run the most challenging mile a minute faster than my average mile pace.

Soon afterward, I heard the music at the finish line as I rounded a bend. And when I reached the final straightaway, as in every race, I pulled out one more sprint for “T.”

I ran the 2011 Tar Heel 10 Miler 12 minutes faster than in 2010, so tonight, true to my word, I’ll make a $60 donation to our Miles to a Miracle campaign. But more importantly, I’ll never stop running. In fact, I got back out on the track tonight, ready to tackle the next race for Taylor. Laurel Hill has nothing on the mountain we have yet to climb. But I believe.

Please consider making a gift of your own to help Taylor’s Tale cross the finish line of the ultimate race: the race to save the lives of children like my little sister. Give Now

Laurel Hill

Published: March 22, 2011 ~ 0

By Laura Edwards

Two weeks from Saturday, I’ll run my favorite race, the Tar Heel 10 Miler, on the streets of Chapel Hill, NC and the gorgeous campus of the University of North Carolina.

I’ll pass mile marker one on the L-shaped road I used to take to UNC basketball games at the “Dean Dome” and soccer practice before they turned our old field into a parking lot.

Around mile marker five, I’ll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater’s grass-carpeted floor.

Near the very end of the race, I’ll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It’s the most difficult part of the race – so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.

Laurel Hill isn’t easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I’ll cross the finish line.

This will be the third race I’ve run for Taylor since Thanksgiving, but this time, I’ll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by almost 20 minutes. Granted, south Charlotte doesn’t have a Laurel Hill. But I’m almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.

To honor my little sister’s valiant fight against Batten disease, I’m pledging $5 for every minute under my 2010 time. I’m also asking friends to give anything they can in support of my run. I’ll post my race result here on Sunday, April 10.

To donate, visit www.taylorstale.com/miles and click on the ‘Donate’ button in the sidebar.

I’m incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we’ll never stop fighting – or running.

Finding My Wings

Published: December 16, 2010 ~ 0

By Laura Edwards

I snapped this photo with my phone near the very end of the 13.1-mile Thunder Road Half Marathon course this past Saturday morning. If it doesn’t strike you as special, take a closer look. The man in the blue shirt is running with a cane. He’s blind.

My friend Amy pointed this fellow out to me early on in the race, when the throng of runners still tightly packed the streets of uptown Charlotte. Seconds later, I lost him in the crowd.

Three thousand, two hundred thirty-one runners completed the 2010 Thunder Road Half Marathon, but for some reason, I crossed paths with the blind runner not once, but twice on our shared journey to the finish line. I can’t say the same about any other runner with any degree of certainty. I’m not the most superstitious person in the world. But I believe in divine intervention.

I believe I could have gone the full 26.2 Saturday based on energy alone. My heart and my lungs still felt good at mile 13. But by then, my feet and ankles had already been screaming for mercy for seven whole miles. Many times, my head told me to pull out. Injuries on top of injuries – and the accompanying pain – can do that. I forged on because I was running for Taylor. When I saw the blind man under the bridge, I knew she was right there with me. Shortly afterward, the finish line came into view. Taylor helped me find my wings, and I sprinted the rest of the way.

If I Have to Crawl

Published: December 4, 2010 ~ 0

By Laura Edwards

The cold, damp weather chased me indoors this morning for my Thunder Road Half Marathon training. I’m a fan of running in the cold, but not the rain. So I bundled up and headed to the YMCA, where I hit the 1/12-mile-long track with my heart set on completing 120 laps, or 10 miles.

The first mile felt good – nice and easy.

The second mile was better; my muscles were warm, I was into the heart of my playlist, and I coasted.

Near the end of the third mile, I thought about how if I was Taylor running one of her 5Ks, I’d be close to the finish line. When I’m running a race, I like to sprint the rest of the way as soon as the finish line comes into my field of vision. But Taylor never got a glimpse of the finish lines she crossed. She had to get her last burst of energy from somewhere else – somewhere deeper, somewhere purer.

Two laps into the fourth mile, an invisible demon struck a match inside my shoes, and the balls of my feet caught on fire. My Achilles whined. Everything else felt good, though. So I pushed on.

Partially to push my very real physical pain out of my mind, I thought about how if I was Taylor, I would be running in darkness. I was too scared to close my eyes on one of the turns, so I closed them for an instant on a straightaway. I felt the presence of other runners and walkers on the tiny track and knew that I would never be able to make it to the far end. I opened my eyes.

Seven laps later, I glanced down and discovered that the entire toe area of the shoe on my right foot was soaked with blood. I never stop in the middle of a mile, though. I had three laps left. Just a quarter of a mile.

As I rounded the third corner of lap 60, I sprinted the length of the last straightaway and right into a chair by the water fountains. I was only halfway through my 10-mile run. But I knew I was done.

I’ve been injury-prone since I was 15 years old. I’ve never gotten through a single soccer season without getting hurt. In my mid-20s, I made the inexplicable decision to turn myself into a distance runner. I never really thought about why until this very moment, right here. But I know instantly, without question, that I became a distance runner because of my sister.

In the months after Taylor’s diagnosis, I ran to get away from Batten disease. No matter what, running always felt better than crying. I still cried. But I ran more. And after I discovered that I just might have a say in how the story turned out, I ran harder than ever.

Blood-soaked shoes and all, I’ll never stop running. Next Saturday, December 11, I’ll cross the finish line of my second half marathon, even if I have to crawl. I could never let myself quit. That’s not Taylor’s style, and it’s not my style either. So, to bloody feet and weak ankles and Batten disease, I say bring it on. You may knock me down. But you’ll never knock me out.

I’m not only running for myself – I’m running to save Taylor’s life. Please consider supporting my efforts through Miles to a Miracle, a new campaign inspired by Taylor’s great courage on the race course and in life. Email me to learn how.

Miles for T

Published: August 28, 2010 ~ 0

By Laura Edwards

Late this past spring, I was running in my neighborhood when an idea popped into my head. The idea didn’t have any shape or sense of order to speak of; when I climbed up my mountainous driveway at the end of my run, all I knew was that I wanted to use running as a way to fight Batten disease. Running is one of my purest forms of therapy, and it’s also central to what many people have said is the most inspiring of many inspiring stories about Taylor. Without the advantage of sight but with the blessings of her own heart and a big-hearted friend, my sister completed two 5Ks during her time with the Girls on the Run program at her school.

Three months later, with the help of some very good friends of my own, my hodgepodge idea is becoming a reality. About a month from now, Taylor’s Tale will unveil an exciting new campaign that will allow us to touch every part of the globe that has Internet access. And no matter how you prefer to stay active – by running, swimming, cycling, hiking, walking – anything that allows you to to log miles – you’ll be able to do what you love in honor of kids all over the world fighting Batten disease. Along the way, you’ll have the opportunity to share your own stories through words, pictures and videos – and connect with others logging miles, from the tree-lined paths of Charlotte, North Carolina, to Sioux Falls, South Dakota, to the foggy streets of London, and even to faraway places like Australia and New Zealand (these are just some of the locales of friends who have already made a pledge to join our team!).

I’m so excited about this campaign that I’m having to work really, really hard to keep most of the details under wraps. With that said, it’s probably best if I wrap up this particular post for now, but please stay tuned, as the launch will happen in the very near future. Thanks for all that you do to help us believe in miracles!

ourboys 5K

Published: May 3, 2010 ~ 0

By Laura Edwards

This Saturday marks the fourth annual ourboys 5K to benefit the Batten Disease Support and Research Association (BDSRA). The event starts at 8 a.m. at Harris Road Middle School in Concord, NC. The event includes a 5K walk/run, one-mile fun run, children’s games, activities and a car wash. To register online, click here.

In addition to funding research, BDSRA provides much-needed support services to families all over the world. To learn more, click here.

944th

Published: April 12, 2010 ~ 0

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.

.1 to Go

Published: December 15, 2009 ~ 0

By Laura Edwards

In July 2007, one year after T’s diagnosis, I began training for my first marathon, which I planned to run in her honor. That September, I set a new personal record for distance with a 17-mile training run. Two weeks later, I pulled out of December’s Thunder Road Marathon with a foot injury.

One year later, I took it down a notch and registered for the half marathon. A series of family crises that fall affected my training; a month before the race, another injury led me to pull out of the half. On the morning of the Thunder Road events, I instead started the Jingle Jog 5K with my sister and her Girls on the Run team. Twenty-odd minutes later, I arrived at the finish line; 30 minutes after that, a triumphant Taylor crossed the finish line carrying the Fletcher School team sign with her coach, a few teammates and her running buddy, Mary-Kate.

This year, I again registered for the half marathon, but nagging pain in both feet, chronically weak ankles and a hectic autumn prevented me from training the way I would have liked. This time, though, I was determined to stay the course, even when a podiatrist plainly told me the morning prior to the race that my feet and ankles were a train wreck, and he didn’t want to tell me not to run, but…

And so it was that I found myself giddy in the crowd of 9,000 runners at 7:50 a.m. this past Saturday.

I started out at a moderate pace, as I always do. God didn’t build me like a long-distance runner – I’m a more natural sprinter – and I have to constantly remind myself to conserve energy. After the first few miles, though, my happy little endorphins took over, and I coasted for awhile. Then, at around mile five, the pain set in – throbbing pain and a fire burning in the balls of my feet (which take constant punishment, as I run on my toes) and tightness in my arches. By mile eight, I was the runner the onlookers lining the streets of Charlotte had to encourage to grind it out.

At mile 12, I split off from the marathoners to run the last 1.1 miles of the half course. It helped me to think about that last mile in terms of laps around a track. I told myself I only had four laps to go – easy. After what felt like two laps, my eyes began searching in vain for Martin Luther King, Jr. Blvd., where I knew the race ended.

The mile 13 marker was within sight when I first considered walking. Then, I remember, a woman – no, an angel – standing on the sidewalk told me, “Once you turn the corner, you’ll be able to see the finish line.” And at that very moment, I remembered what Mary-Kate, Taylor’s running buddy, had said to me one year prior at the Jingle Jog finish line. When my blind sister fell and scraped her knees on the city streets, Mary-Kate told me, she asked her if she wanted to walk for a bit. Taylor, though, just shook her head, pulled herself up off the ground and started to run again. She didn’t set any records that day, but when my sister crossed the finish line, she was running – just as she was at the completion of the Girls on the Run 5K this past May.

As those visions of Taylor running flickered through my mind, I turned that corner and, just as the woman had said I would, I saw the white banner stretched out above the finish line.

Even as my body begged me to stop, I shook off its pleas and, feeling Taylor’s courageous spirit coursing through me, I sprinted the last .1 mile to the finish.

Like T that day at the Jingle Jog, I didn’t set any records in the running of my first half marathon – my fourth road race ever and, by eight miles, the longest. But that feeling I got over the past .1 mile was something I’ll have for the rest of my life.

Turkey Trot is Almost Full!

Published: November 17, 2009 ~ 0

By Laura Edwards

The Charlotte Turkey Trot features a great course and is a hugely popular race, year after year. Word has it that registration for this year’s event is about to be closed. If you’re planning on joining Taylor’s Tale for the 8K run or 5K walk and have not registered, please do so ASAP! You can register online at http://www.charlotteturkeytrot.com/. Don’t be a turkey – reserve your spot now to trot in honor of kids with Batten disease on Thanksgiving Day.

p.s. Just as a reminder – we have t-shirts for anyone taking part in the day’s festivities. Send me an email at laura@taylorstale.com with your size and the best way to catch up with you between now and Thanksgiving!