Uncommon Magic

By Laura Edwards

jump ropeDuring Taylor’s fifth grade year, a wonderful thing called Girls on the Run came to her small, private school. Already blind and struggling with her speech, Taylor nevertheless wanted nothing more than to go through the program with her girlfriends. That year, a modified jump rope and an upper school student with a big heart became her lifelines. They helped Taylor experience some sense of normalcy and, in doing so, created an uncommon magic that changed all of our lives forever.

Yesterday, Girls on the Run founder Molly Barker published a post on the Athleta Chi website. The post, originally printed in Endurance Magazine in 2009, could have only been penned by someone lucky enough to witness the amazing event it describes. Barely 24 hours old on the web, it’s already gone viral, but if you haven’t had a chance to read it, I encourage you to do so by clicking on the link at the end of this post. It will be well worth your time – I promise.

In all my years on this earth, I’ve never come across anything as tragic or daunting as Batten disease. I’ve run many miles in the six-plus years since Taylor’s diagnosis, but on many of those days, part of me has wanted to simply run away – to quit fighting. But through it all, Taylor – the one who stands to lose the most – has taught the rest of us an incredible lesson about courage – about honoring every moment we’re given, about friendship, about love, about believing. Taylor may be blind, but she opened our eyes to what really matters most in this world. Taylor can no longer run, but she – and those of us who love her – will treasure her Girls on the Run experience – and more importantly – the gift of having known her – forever.


I shared a link to Molly Barker’s post on the Taylor’s Tale Facebook page yesterday. Today, the father of one of her former classmates shared the following response:

My son Nicholas and I will be running the Half Marathon. This will be our second year and we hope not to have such a “battle” for last place. Neither of us are runners but we are doing it for the challenge. I mentioned to Nicholas that Taylor (he was a year behind her at Fletcher) did a 5K without stopping and I told him we can’t even think about waking or slowing down before mile 3 because no matter how “tired” we may be, we need to push through just like Taylor did. We’ll be wearing pink shirts to show our support for Taylor.

Most of Batten disease is really bad; I think this message embodies all that is GOOD about our fight against Batten disease. As I said before, I’ve never come across anything quite so tragic or daunting. And I could come up with a thousand other equally horrible and appropriate words to describe it. But Nicholas’ dad’s message gave me tears of joy. It gave me the strength to believe – for one more day. I, too, will run the Thunder Road Half Marathon for Taylor in less than two weeks. I may not see Nicholas and his dad among the thousands of other runners. But together or apart, we’ll push through. For Taylor. Read Molly Barker’s blog post

Running for Taylor on 11-17-12

By Laura Edwards

For as long as I can remember, I’ve run to deal with pain.

Since Taylor’s infantile Batten disease diagnosis in July 2006, I’ve run a lot – on average, more than 1,000 miles a year. Running doesn’t give me solace – not exactly, anyway – and besides, my feet can’t carry my sister to survival. But it’s a lot cheaper than counseling and massage therapy and once-in-a-lifetime trips to faraway wonderlands – all of which have also contributed their fair share to my survival over the years. And running clears my head. It helps me feel alive. It makes me appreciate my (mostly) healthy body – for instance, two eyes to drink in the amber, gold and crimson leaves and powder blue sky that framed last weekend’s run and two legs to carry me over a never-ending course that goes wherever I tell it to go and stops only when I want to rest.

I played soccer all my life, and I always had running in my bones, but I didn’t run in my first organized distance race until five years ago. Around that same time, my sister, Taylor, signed up for Girls on the Run at her school. Blind and less than a year removed from major brain surgery, Taylor nonetheless went to practice with the other girls and walked or ran her laps every day after school. Near the end of the semester, a crowd of kids joined in as she finished the final laps of her practice 5K. And that December, Taylor and her running buddy, joined by a simple jump rope, ran the entire length of the Jingle Jog 5K in uptown Charlotte without stopping even once to rest. Five months later, they did it again in the Girls on the Run 5K.

ourboys race

Since watching my little sister cross the finish lines of those races nearly four years ago, I’ve run every last mile for her.

On Saturday, Nov. 17, I’ll run in Charlotte’s Thunder Road Half Marathon for the fourth time. Last year, I had surgery the morning before the race and couldn’t run. I’ve had a light year so far in 2012 – the Charlotte 10 Miler and Frostbite 10K in February and the Tar Heel 10 Miler and ourboys 10K in April. So I’m hoping to finish with a bang at Thunder Road.

Thunder Road is Charlotte’s biggest race of the year, so if you’re a runner and live in the area, chances are, you’re signed up too! If so, and if you’re interested in running in Taylor’s honor/for Taylor’s Tale, please let me know ASAP. If you’re not running but want to come out that morning and cheer on the runners, simply click on the link above to access a course map – then be on the lookout for the girl decked out in Taylor’s Tale purple. 🙂 And – if you’re so inclined – you can make a tax-deductible donation to our Miles to a Miracle campaign in Taylor’s honor by clicking here. All proceeds support the search for a therapeutic treatment for Batten disease.

We’ve made a ton of progress in the race to save children like Taylor. Thanks for helping us get to the ultimate finish line!

No Dead Ends

By Laura Edwards

Laura pre-raceYesterday morning, I awoke to the sound of my alarm at 4:45, swung my legs to the side of the bed and braced for a shot of late February as my bare feet hit the hardwood floor in the silent, dark room. Ordinarily, I can’t bear the thought of rising before dawn. But I stood and walked to the kitchen without hitting the snooze button even once. I had a race to run for Taylor.

My husband, God love him, doesn’t understand this crazy race stuff but still dragged himself out of bed early enough to head to the race site with me and play on his iPhone in the relative warmth of his car for 70-some minutes while he waited for texted-in-stride instructions at mile marker nine to get to the finish line.

A few minutes after 7:30, I lined up with 333 other brave souls for the start of the first-ever Charlotte 10 Miler. I run the Tar Heel 10 Miler in Chapel Hill, NC on the campus of my alma mater every April, love it and couldn’t believe my luck when I learned that my hometown had gotten its own version of the wonderful but rare distance and – better yet – had chosen to put it almost in my own backyard.

At 7:55, the horn sounded.

Last year, I set a personal record (PR) for the 10-mile distance when I ran the Tar Heel 10 Miler in 1:24:00, finishing in the top 20 percent of the field.

Five days later, I injured my left Achilles tendon in a soccer game. I spent the next three months in a boot. Since then, I’ve run a grand total of one race – a 10K in the rural NC mountains last weekend. I missed last November’s Thunder Road Half Marathon for the first time in several years. Needless to say, I had no clue how I’d do in the Charlotte 10 Miler. And though the field was small, it was strong. My non-runner husband’s first words when we arrived were, “These people look serious.” So when I took off at the sound of the horn and let the cold air fill my lungs, I told myself I just wanted to run a respectable race in my little sister’s honor.

When I passed the first mile marker, the app on my phone announced my current pace – 8:35 per mile. I knew that put me close to my 2011 Tar Heel 10 Miler time (when I averaged 8:24 per mile) but didn’t think I could keep it up.

But even after I reached the halfway point, my pace held steady.

Around mile marker eight, the course cut through a neighborhood, rounded a bend and presented my fellow runners and me with the second-steepest hill I’ve ever encountered in a race (the steepest being Laurel Hill – a monster near the end of the Tar Heel race so notorious that it gets its own separate timing mats). And right then, my legs voted unanimously – without consulting me – to quit. Every muscle from my feet to my waist burned right down to my bones.

I thought about walking to the top of the hill. What harm could it do? With such a small field, I didn’t have to worry about the psychological tear-down effect of watching scads of runners pass me while I caught my second wind.

And then, just as quickly as the thought had entered my mind, it dissolved. In its place I saw a timeless image of my sister in her first 5K; falling, scraping her knees and palms; being given a chance to walk; gracefully turning it down; getting to her feet and finishing the race; running – not walking – across the finish line.

I ran up that hill, using my arms to propel my body when my legs refused. When I got to the top, I found my second wind. As I caught my breath, I sent my husband the promised text – “Get to the finish line!” – stowed my phone and picked up speed.

finish line

Taylor can’t run 5Ks anymore. But she is with me for every race I run. Never is that more apparent than when my body begins to fail me. I maintained a steady pace the entire race – except for the final mile. I ran mile 10 a full minute faster than any of the previous nine miles. I crossed the finish line at 1:26:10; I averaged an 8:37/mile pace, fell just two minutes short of my 2011 PR and beat half the field.

After the race, other runners talked about the hill that almost claimed me. Many thought it warranted a name, like the famed Laurel Hill. One runner suggested “Dead-endhaven Hill” (after a nearby street, Endhaven Lane).

My next race is seven weeks away, but my race to save children like Taylor from Batten disease never stops. The latter makes the Charlotte 10 Miler – even with a field chock-full of “serious runners” (in the words of my husband) – look like a walk in the park. But I know that I have to keep going – even on the days when the hills seem like insurmountable mountains.

Batten disease comes with a lot of pain. Our fight with this monster is far from easy. There will be many difficult days. But there are no dead ends.

The Search for the Invisible Finish Line

By Laura Edwards

My Charlotte elementary school held an annual field day competition – for me, the highlight of the year. Back then, I spent many recess periods reading novels in the shade of the old campus’ stately oaks, too introverted to insert myself in the hopscotch and foursquare games and friendship bracelet-making parties of the other girls. But when field day rolled around, I showed up in Umbros and a t-shirt, handed my thick glasses to my teacher and smoked all of my classmates in the fifty-yard dash.

Charlotte Soccer Club gameThroughout my soccer career, I wasn’t always the most talented player on the field, but I was almost always the fastest. As a right midfielder, I loved to sprint down the sideline with the ball at my feet, beat the defense to the corner flag, wait for my teammates to catch up and curl a cross back to the top of the box for a shot on goal. I never led my team in goals scored, but I often led it in assists. During the spring of my senior year, my high school coach moved me to defense; prior to each game, he instructed me to mark the opposing team’s fastest player.

My best friend on my high school and club soccer teams could juggle the ball till the sun went down; I couldn’t juggle the ball for more than five seconds. But I had a killer cross, could throw the ball farther than most of the men’s team, and could outrun the whole conference. If I’d run track, I’d have specialized in the 400. And on the soccer field, I made my living as an athlete.

Nearly 20 years after I took home my first blue ribbon for the 50-yard dash and 14 years after I first stepped onto a sweet-smelling, freshly mowed soccer field, I learned that my little sister likely wouldn’t have the opportunity to chase her own dreams. After her Batten disease diagnosis, Taylor ran two 5Ks. But she last crossed a finish line in May 2009. And today, that singular moment feels as if it happened in another lifetime, to another family.

When doctors discovered the fatal flaw in Taylor’s genetic makeup, I ran to escape it. When adrenaline coursed through my veins, I felt unbeatable. Rather than turn to alcohol or drugs in an attempt to blur the sharp edges of my family’s tragic turn, I became addicted to running.

But Batten disease didn’t tire easily, and it became clear that we had a long fight on our hands. One morning, in a moment of perfect clarity, I realized that I wouldn’t find salvation at the end of a 50-yard sprint. So I did the only things I knew to do. I gathered all of my stamina. And I reinvented myself as a distance runner.

After passing the 13th mile marker during my first half marathon, I wanted to quit. My lungs burned. A fire raged in the soles of my shoes. A soccer player accustomed to sharing a field with 21 others, I discovered at that moment that running can be a very lonely sport – if you let it. But then, I rounded a corner and came upon a gray-haired lady sitting in a lawn chair on the side of the road. As I approached her, her eyes met mine. A look of understanding crossed her face; at that moment, I believe she understood me better than I understood myself. She smiled, put her hands together, and yelled, to me and only to me, “You can do it!”

finish line

I probably overtook 100 people in that final .1 mile, sprinting at full speed through a tunnel of spectators under a clear winter palette dotted with the skyscrapers of uptown Charlotte.

About five months later, I entered a spring race held among the blooming dogwoods and azaleas on the campus of my alma mater; in just under 90 minutes, I jogged through the tunnel and onto the oval circling the field at Kenan Stadium, where my legs found new life and carried me past almost everyone and across the finish line of the Tar Heel 10 Miler.

The races have gotten a lot easier since I christened my long-distance career. Despite a sore Achilles, I finished in the top one-fifth of the field in the Tar Heel 10 Miler this past April. A couple of weeks ago, I went out and ran 13.1 on a beautiful Saturday afternoon – just because I felt like it. But our battle with Batten disease – our search for the invisible finish line – has gotten more difficult with each passing year. Sitting here now, writing these words on New Year’s Day, I know that 2012 will be, without question, the toughest test yet.

I also know, from experience, that it is indeed possible to accelerate when, moments before, you thought you had nothing left to give. And I know that no matter how painful or exhausting it may be, I must be faster in 2012 than I have ever been before.

Yesterday, I ran 10 miles in my last personal physical challenge of 2011. My time for the first mile? 10:01. For the tenth mile? 7:24.

Finding My Wings

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

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 to a Miracle!!!

By Laura Edwards

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit – some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor’s school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates – never mind that she’s blind. Taylor has always refused to watch the figurative race – life itself – from the sidelines – and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy – an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.
On the day of the practice 5K shortly before their first shot at the real thing – the Jingle Jog in uptown Charlotte – Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others – including her classmates and coaches – fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T’s feat that day and immortalized it in an article she wrote for Endurance Magazine.
A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister’s face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing – even Batten disease – is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word ‘Believe,’ written in big chalk letters stretched across the pavement. And even though T didn’t win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don’t know exactly how long it will take us to get there, the finish line – in this case, the cure for Batten disease – does exist. And the smarter and faster we run, the more kids like Taylor we’ll save.

Enter Miles to a Miracle, Taylor’s Tale’s exciting new campaign to fight the disease that threatens to steal Taylor’s ability to run and so much else. T’s story is about running, but you can do whatever activity you love for kids with Batten disease – whether it’s running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own – from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 – the distance in miles around the globe – in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don’t think you’ll do any fundraising but still want to help us use Taylor’s inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend’s effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:


Go to Miles to a Miracle!

.1 to Go

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.