World Cup Wins and Batten Disease Losses

By Laura Edwards

Tonight, the U.S. women could win the World Cup final for the first time since 1999.

I was 17 the last time the American women won soccer’s top prize. In the summer of ’99, I was a high school midfielder with great speed, a long throw and a competitive streak that didn’t match my quiet personality off the field. I idolized the national team players I’d grown up watching and dreamed of playing at the next level. continue reading →

I May Have to Crawl…

By Laura Edwards

ankle icingBecause the ligaments in my ankles are like old rubber bands, I guess it’s only fitting that I twisted my ankle – again – during an activity that has nothing to do with running or sports. A couple of weeks ago, I sprained my right ankle running after dark, with a blindfold over my eyes (the ugly scab on my left knee in the photo is a souvenir from that fall). Today, I sprained my other ankle trimming my roses. I wore Adidas sandals down to the mailbox; I guess this means that I need to break out my ankle braces for gardening from now on.

My ankles (both of them) will be okay, like they always are. I’ll ditch running for the time being, like I did this afternoon, and the swelling will subside. The “nice” thing about having ankles like mine is that I don’t have much left to injure, so my recovery time is better than most. As for my long-term health, I try not to think about it too often.

I wouldn’t be in this position if not for a three-month period during my senior year of high school in the spring of 2000. That February, I sprained both of my ankles during preseason practice with my school’s soccer team. I should have taken time off from playing; instead, I went to the athletic training room every day at 2:30 for an ice bath and a double-layer tape job with athletic tape and moleskin, which went under orthopedic braces. I played in every practice and every game that season; once, I went to school on crutches, then took two ibuprofens, went to the trainer for my tape job and played all 100 minutes in a double-overtime win over our arch-rival.

It sounds crazy, but for an 18-year-old with a dream of playing at the next level, it made perfect sense at the time. And that spring, despite my injuries, I had more fun on the field than I’d ever had in all my years of playing soccer. I played with my best friends, the underclassmen looked up to me, and my coach saw enough in me to risk my long-term health for the good of the team. At least, that’s how I looked at it.

This isn’t a blog about soccer, and it isn’t a blog about my senior year of high school. But whenever I remember those days now, I think about how my sister, Taylor, has been robbed of similar experiences. Not the ankle injuries – I’ll keep those for her sake – but finding something she loves so much that she’d play through pain to avoid missing out on a single moment; end-of-season pizza parties and team sleepovers and out-of-town tournaments and long bus rides back from state playoff games; the joy of winning, the heartbreak of losing and the indescribable feeling of being part of something bigger than yourself.

That’s why I won’t let anything stop me from running for Taylor at Thunder Road. If my ankles don’t shape up, I may have to crawl. Without my vision, I may record the worst half marathon time of my life. But on Saturday, Nov. 16, I’m crossing that finish line blindfolded for my sister. I’ll never drop out of this race, and I’ll never stop fighting Batten disease for her.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

A Leg to Stand On

By Laura Edwards

On June 5, I began training for Charlotte’s Thunder Road Half Marathon with a good friend, Andrew Swistak. Andrew and I could both run a half marathon tomorrow, but on Nov. 16, I’ll run 13.1 miles blindfolded in honor of my little sister, Taylor, who suffers from Batten disease. If you’ve been following my blog for the past month, you know that I twisted my ankle the first time I ran in the dark and that I re-injured it hiking in the mountains of North Carolina eight days ago. The ligaments in my ankles are like old rubber bands, and my worst fear came true not more than 30 minutes after I told Andrew I wanted to give darkness a trial run.

Brooks shoes

But for eight days, I behaved. I swore off running, instead heading to my local YMCA to do free weights and crunches. I stuck a box of extra stroke symposium invitations under my desk at my hospital marketing and PR job, kicked off my shoes and propped up my bum ankle. I sported an ACE bandage, a fabulous summer accessory, and iced several times a day. And when I got home tonight, I said hello to my running shoes. “Oh, how I’ve missed you. Do you have room for a brace in there? We have some catching up to do.”

As I glanced at the clouds dotting the sky, checked the late-night forecast one last time and changed into my neon-colored running shirt, I thought about how my sister, Taylor, can’t beat the symptoms of Batten disease in eight days’ time. I thought about how I trashed my ankles playing soccer because of choices I made, not because of predetermined information in my genes. I thought about how I have wet spaghetti noodles for ankle ligaments, and yet I can still lace up the best hiking boots money can buy, dig my poles into the earth and hike 17 miles round-trip in a day, seeing some of God’s greatest wonders along the way. Taylor can’t hike, and she can’t see. Batten disease ripped my heart out the day I learned its name, but it’s stolen so much more from my sister.

Batten disease wants to steal Taylor’s life. But it hasn’t succeeded yet. Every day, my sister wakes up in her world of darkness, and she finds a reason to smile. I call that courage. Tonight, I’ll summon some of her strength when I wrap my injured ankle and set out into the darkness for blindfolded run number six. And for as long as I’ve got a leg to stand on, I’ll run for her.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Taking Risks

By Laura Edwards

Training run number five got off to a late start last night, because my sighted guide, Andrew Swistak, and I both wanted to watch aerialist Nik Wallenda attempt his tightrope walk across a gorge near the Grand Canyon.

Nik Wallenda and his family of aerialists, acrobats and daredevils are famous because of the risks they take and the feats they attempt in order to entertain an audience.

I remember how my stomach dropped when I saw people scrambling like ants on a log up the razor-thin switchbacks to Angel’s Landing in Utah’s Zion Canyon on a hiking trip in 2009. I know I’ll never try anything even close to the performances that are ordinary for someone like Nik Wallenda.

photo (1)But every time I pull a blindfold over my eyes and join my sister in her world of darkness, I take a risk to gain an audience and honor my sister. I realize that the two situations are not the same. I know I’m not risking my life. I’m never alone, and Andrew was born to lead the blind on the run. But all of the radiology imaging tests and physical exams from over the years don’t lie, and in case I dare forget, the auditory popping of my ankles serves as a daily reminder. Soccer – my first love – shredded the ligaments in my ankles, and I’m running on flat tires. So when I mistimed a curb jump and felt my left ankle go left, then right, then left again the first time I ran blind, on June 5, I suffered a setback.

Soccer’s taken me down this road before, though. As I joked to someone today, I didn’t have a clue what to do when I injured my Achilles tendon in 2011, but I can medicate and elevate and ice and tape an ankle like a pro. Andrew and I can cut our runs short, as we did last night (we logged just 2.61 miles after watching a teary Nik Wallenda twinkle-step the last few feet of his journey). And if all else fails, we can succumb to my ankle and take a short break. We’ve accomplished more in five runs together than I ever dreamed possible.

And like I’ve said before – no matter what happens, when race day arrives, we’ll be ready.

Because it’s for Taylor.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Come on Eileen

By Laura Edwards

soccer teammatesI had my nails done on my way home from the office this afternoon. A local station played on an unseen radio in the otherwise strangely quiet salon. Between my pedicure and manicure, the station played the song “Come on Eileen,” released by the Dexys Midnight Runners in the summer of ’82, when I was three months old. As the first notes reached my ears, I immediately thought of one of my best friends from high school, Allison. Allison and I played on the same school and select soccer teams for six years. Our high school varsity team put together a playlist for pre-game warm-ups on the field for all of the home games each spring. Allison LOVED ’80s music, and she’s the only person I ever met who could get psyched up for a game by listening to a song like “Come on Eileen.” I still can’t figure it out, but hearing the song today made me smile just the same.

Taylor’s eighth grade year is complete. If life had turned out differently, my little sister would be a rising freshman, her whole life still ahead of her. She might have been on the field for select soccer team tryouts this summer or in the football stadium with a couple of pom poms this fall. But instead, Taylor will not be with her classmates – her friends – when they enter high school in August.

At Taylor’s age, I didn’t have many worries – not real ones, anyway. When most of my middle school friends when to the rival high school, I worried about making new ones. I wanted straight As, not As and Bs. I desperately wanted to impress my select soccer coach in our twice-weekly practices so he’d give me lots of playing time on Saturdays and Sundays. I wanted a “steady” boyfriend, or at least a date.

Taylor doesn’t have time to worry about any of those things. She’s fighting for her life. And I HATE that. I lost a lot of sleep over a lot of frivolous things during my teen years. Then, I turned around and spent a good part of my 20s fighting tooth and nail to give my little sister – and every other kid like her – a shot. Not at making straight As, or becoming a star athlete, or dating the homecoming king or queen. A shot at LIFE, whatever it might hold. That’s all.

My little sister is beautiful. I love her just for who she is. And I HATE Batten disease.

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.

The Meanest Mother in the World

By Laura Edwards

Growing up, I thought I had the meanest mother in the world.

My friends’ mothers did most of the work on their science fair projects, but I had to do almost all of the work on mine. One year, I tested different brands of store-bought popcorn for their popping prowess. On a gorgeous Saturday afternoon, my mother made me sit at the kitchen table counting hundreds of popped and unpopped kernels while my friends played outside.

In elementary and middle school, I hated wearing dresses and got nervous around boys, but during my sixth grade year, my mother forced me to participate in Teen Cotillion. On Wednesday nights, instead of building forts in the woods or going to Charlotte Hornets games with my dad, I had to put on a skirt and go to a middle school gym to learn how to do the waltz and the shag and the electric slide and hold hands with boys.

For more than a decade, my mother dragged me to piano lessons once a week, and the other six days, she made me practice for at least 45 minutes, setting the timer on the oven so I couldn’t cheat. While other kids got to play fun music from movie soundtracks and chart-topping albums, I had to play the classics. And while lots of kids got away with just playing in the annual recital, I had to play in all of the competitions, too. I got a ‘superior,’ the best score, every single competition in every single year – all but one. That time, I got an ‘excellent,’ the second best score. On the way home, my mother told me I didn’t play to my potential.

Some of my friends bought pizza in the school cafeteria five days a week, but my mother sent me to school with thermoses of chicken noodle soup and apple slices and peanut butter sandwiches with the crust still attached.

A lot of my friends’ rooms looked like war zones, but my mother made me clean my room and took away privileges if I didn’t. She used to follow me around with the vacuum cleaner and got mad when I wore my muddy soccer cleats into the kitchen.

Most of my high school friends had midnight (or later) curfews, but my mother insisted that I arrive home by 10:30. During my sophomore year, on the night before I turned 16, I went to the senior follies production at school with my junior and senior friends. One of them convinced me to stick around for a birthday celebration with store-bought cupcakes and mismatched candles at midnight. I walked in the door of my house at 12:25, almost two hours after curfew. My mother grounded me.

None of my friends’ parents pressured them about their grades like my mother pressured me. The first semester of my freshman year of high school, I got my first-ever ‘C,’ in English. My teacher told my parents that I got the ‘C’ because I didn’t apply myself, so my mother took away my Cliffs Notes, threatened to hire a tutor, and insisted on reading my take-home papers before I turned them in. I never got another ‘C’ again; that spring, I took the state writing test and got the highest score in the school. Seven years later, I graduated from college with an English degree and an ‘A’ average.

Many of my soccer teammates’ moms came to every single game – even the weekend-long tournaments out of the state – and waited in the parking lot after practice so they could yell at the coaches about their daughter’s playing time. My mother never came to practice, never yelled at my coaches, and never even came to many games. She was too busy being president of the Junior League or serving on some other board to give kids with handicaps or from less fortunate families a chance to believe. And while my teammates’ mothers helped them research college soccer programs and athletic scholarship opportunities, my mother told me to go to the best school, even if I had to walk on the team or, worse yet, never got a chance to play on the varsity.

When I became extremely homesick at the beginning of my freshman year of college, my mother wouldn’t let me move home to go to the school my boyfriend attended. She told me that if I didn’t like my school, I could go somewhere else, but I couldn’t come home.

When I told my mother my boyfriend and I wanted to spend the summer after my graduation driving across the country, she told me no. Instead, she made me get a PR internship at a local ad agency while I figured out what I wanted to do with my life, since my original plan to be a starving artist didn’t solve the issue of getting me off my parents’ payroll. That internship led to the career I have today. And when I wanted to get married after I earned my undergraduate degree but before my husband finished his, she convinced me to wait until he was halfway through grad school.

Finally, after years of waiting, my wedding day was the happiest of my life. That day, I stood in front of 75 of our closest family and friends and toasted my father and my mother for giving me everything a daughter ever could ask for.

Since that day, I’ve seen my mother torn apart by the disease that shattered our family the same day we learned of its existence for the first time, just one month after my wedding. I’ve watched her fight for my sister, Taylor, like her own life depended on it – and maybe it does. I’ve watched her demand the best of the people who have a chance to give kids with Batten disease a future, just like she used to demand the best out of me. I’ve seen her at her most desperate, and in those moments, I’ve tried, often in vain, to be the rock for her that she’s always been for me, even though I used to be too naive to see it.

I love my sister, but I’m not only fighting for her. I’m fighting for my mother – the greatest mother in the world. Because that’s what she always did for me.

Mother’s Day is almost two weeks away, but my mother deserves to be honored 365 days a year. Happy Mother’s Day, Mom. I love you!