The Burden of Believing

By Laura Edwards

ourboys 5KI don’t believe in doing things halfway – least of all when it comes to fighting Batten disease. I get that from my mom.

I used to run 30 miles a week. I ran a minimum of six days out of every week. When races rolled around, my body ached. I averaged a 9:00 mile or slower for long races, but I really had to dig deep for that. I knew I could run faster, but my body wouldn’t respond.

Last fall, I decided to cut back on my mileage. I went to 20 miles a week. A couple of days each week, I traded my runs for walks or weights. I dropped the 10-mile runs. I decided to trust my body. I hoped that if I could keep up a training run for seven or eight miles, I could bring it on race day for 10 or 13.1.

Some people might have said I was “slacking off,” but you know what? My body stopped aching – and I got FASTER. I set a new personal record for 13.1 miles at the Thunder Road Marathon in November. In February, I set a personal record for 10 miles at the Charlotte 10 Miler. In March, I set another record for 3.1 miles at the Run the Creek 5K. My training runs got faster, too. I used to average 10:00 miles for those. Earlier this week, I ran a mile in 5:45. And I didn’t even do that on fresh legs – I’d already run five miles.

The point is that the fight against Batten disease deserves our best, but sometimes, “giving our best” means taking care of ourselves and reserving our energy so that we’ll be fresh when we have to climb the toughest hills. For a long time, I’ve said that this is a journey – not a sprint. I know that there’s only so much we can do with the cards we were dealt. I know that our situation sucks and that nothing that happens in any other facet of my life – regardless of how wonderful it may be – will REPLACE what we have lost and will lose. But I’m not any good to anyone when I’m in my darkest place. I’m not useful when I’m fighting writer’s block at 2 a.m. or yelling at my laptop because the Taylor’s Tale website has a glitch due to some technical issue out of my control. I’m not good to anyone when I’m losing my mind over someone else’s bonehead moves or heartless actions or words. When I find myself in my darkest place, it’s time to hit pause. Sometimes I remember to press the button; other times, I forget. I forgot more often than not over the past six-plus years, and I can’t get that time back. But my memory is improving, and my life – and my net impact on this fight – will get better as a result.

Laura, Mom and Taylor

I LOVE my sister more than anything, and I HATE Batten disease more than anything. I want to eradicate Batten disease, but if Taylor could tell us what she wants and feels, I think she would tell us that she doesn’t want us to eradicate our friendships, marriages, careers and lifelong dreams in the process. She would tell us that we can fight Batten disease and have those things, too. She would tell us that she wants us to be happy. Not “happy” like we were before Batten disease entered our lives or as if we’ve moved on – but “happy” as in we’re going to recognize the things we still have that are good and keep it from robbing us of everything we’ve ever known.

I believe that we CAN win this battle. I just don’t want us to lose everything else that makes us who we are along the way. Razing all the cities in your own kingdom is no way to win a war. If you kill all the bad guys but have to go home to smoldering ruins, what’s the point?

I can’t let Batten disease steal my sister AND everyone who loves her.

Mind over Body

By Laura Edwards

When my alarm went off at 6:15 this morning, the outdoor temp hovered in the mid-30s, and a steady, cold rain sounded like a waterfall in my backyard. Of the 619 runners registered for the Charlotte 10 Miler and 4 Mile Run, 164 stayed home.

But I pulled on my wicking socks, UnderArmour tights, three layers of tech t-shirts – purple on top for Taylor – water-repellent jacket and wicking baseball cap.

I ate a Honey Stinger waffle and Gala apple and drank a glass of water.

I laced up my Brooks Glycerin 9s – shoes that served me well for 500+ miles in 2012 but that are balder than a tire on a junkyard car.

I posed for the requisite pre-race, pre-soaking photo.

pre-Charlotte 10 Miler 2013

I climbed in the car with my husband, drove three miles to the starting line and shivered in the rain for 20 minutes until the horn for the 10-mile race sounded. When it did, I discovered that in an effort to steal a few dry square inches beneath the starter’s tent, I’d found a puddle at least a couple of inches deep. Needless to say, my nice, warm, cushioned socks were soaked through.

I didn’t have time to worry about it, though – I had a race to run! I’m a bit of a perfectionist, so whenever I run a race, I want to set a new personal record (PR). My PR for any 10-miler is 1:25:27; my PR for the Charlotte 10 Miler, in only its second year of existence, is 1:26:10.

I’m a pretty consistent runner, which means that if I have any notion of setting a PR, I have no margin for error. I stuffed my iPhone in its double-Ziploc-bag fortress, stuffed that into my jacket pocket, pulled on my gloves, kicked up my water-logged, no-tread shoes and kicked it into high gear.

Two miles in, I entered one of south Charlotte’s greenways and met up with a friend who’d offered to run with me throughout a good portion of the race. Andrew competes in ultramarathons, so my rainy 10-mile race probably felt like a walk in the water park to him.

I usually run with an app that keeps me informed re: my distance and average pace, but today, I traded in my headphones for my running buddy. Andrew paced me, watched out for the wannabe lake-puddles on the greenway’s boardwalks and helped me stay motivated. He talked me through the killer hill on mile eight. I wanted to walk that hill last year, but I jogged it; this year, I RAN it. A few times, he coached me on when to pass people. In the last mile, he scoped out a runner who most likely fell into my age group; I smoked her.

Somewhere on the course, Andrew told me that running’s mostly a mind game.

I believe that.

When I heard that horn sound at the start line and saw the Boston Marathon jacket on the runner next to me – a runner probably in the 30-34 females group just like me – I thought about how I ran my first organized race of ANY distance barely five years ago, and how soccer chewed up my joints and spit them out, and how those joints probably belong in a trash can, not on a race course. I thought about the rain and the bald tires on my feet. And I figured I wouldn’t be setting a new PR. Not today.

Charlotte 10 Miler 2013 finish

But I did.

And out of the 179 runners – male or female – who actually braved the rain to run the 10-miler, I finished 27th.

I don’t know why my sister has to have Batten disease. I wish she could will her broken body to fight off the monster the way I can will my broken body to run long races, rain or shine.

But I do know this: we know how to dance in the rain. And after a good rain, the sun always comes out to play. There’s a monster called Batten disease in our midst, but good things are coming just the same. I can feel it.

I believe.


By Laura Edwards

At 7:30 tomorrow morning, my hometown should be drenched in a cold, steady rain. I’ll be on the south side of town with 619 other soaked nuts, running the Charlotte 10 Miler in Taylor’s honor for the second straight year.

Last year, we got a blue sky and just enough of a winter chill to cut through my long-sleeved tech shirt – good for some lung burn on the nasty hill at mile eight, but not too much to bear.

This year, I might have lakes in my shoes by mile two. So while the kicks I’ll call into service for this race cost more than some of my designer heels when I bought them, they’ve pounded more than 500 miles of asphalt roads, concrete sidewalks and pit gravel tracks; I’ll leave the shiny, new, broken-in-just-enough pair in my closet at home. I haven’t decided if I’ll expose my iPhone – keeper of my special music playlist – to the elements. And if that isn’t enough to throw me out of whack, I had a third surgery on my nose – I obliterated it playing soccer almost three years ago – last month and had to put a short hold on my training.

Needless to say, I don’t know if I’ll set a new PR tomorrow.

But this running thing, I’ve learned, is all about making adjustments; it’s about knowing how to perform even when the elements you can’t control – from the weather to your own body – deal you a wild card. A soccer player turned distance runner who didn’t enter a race till I turned 25, I made a living on the soccer field by being faster than everyone else. I set up shop on the sideline and went up and down, down and up, for 90 minutes, every game. While I miss soccer – I reached my limit for surgeries induced by the sport – I love how the sport of running can be a journey. I can stick my ear buds in my ears, lace up my shoes, run down my driveway with my house at my back and just wait for the path – and the world – to come to me.

Life is a little like that, too – and in a weird, roundabout way, so is our fight against Batten disease. I had no inkling of Batten disease until the moment my mom called me in tears on the morning of July 24, 2006 – the day of Taylor’s diagnosis. I was 24 years old that day; I was one month into my marriage and eight months into a new job; I’d recently bought a house; I was writing a novel. I had a very specific plan for my life, and I didn’t think anyone – or anything – could get in my way. But Batten disease forced me to make tough choices. It forced me to take a few detours. Batten disease was bigger – and more awful – than anything I’d ever faced.

We’ve all taken more than a few hits since that day in 2006, but we’ve won some big races, too. And the best part is, we’re still running – most of all Taylor. My favorite quote of all time is one by Cindy Smith, whose son, Brandon, passed away in 2009 after a courageous battle with infantile Batten disease. Cindy said that “Life is not waiting for the storm to pass. It’s learning to dance in the rain.” And just as Brandon taught his family to dance in the rain, Taylor has taught me to keep going on not only the best, but also the worst of days. So you’d better believe that I’ll keep running – on roads, sidewalks, tracks and in this fight for children like Brandon and Taylor – for as long as I’ve got legs for running and heart for fighting.

p.s if you’re half as crazy as me and live in the Charlotte area, come on out to the finish line of the Charlotte 10 Miler around 8:45 tomorrow morning. I’ll be the one in Taylor’s Tale purple and the water-logged, no-tread shoes. 

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.

Charlotte 10 Miler for Taylor’s Tale

By Laura Edwards

The Charlotte 10 Miler, my hometown’s only 10-mile foot race, is less than three weeks away. On Saturday, Feb. 25, I’ll join a small field for an early-morning start and run the race in honor of my little sister, Taylor.

The course, a combination of green way paths and suburban roads, has plenty of room for more Taylor’s Tale runners. And if you’re not up for the long race, you can suit up for a four-mile version. However, if you can’t stand the thought of running – especially on a Saturday morning in February – you can grab a coffee or hot chocolate, wrap up in a blanket in a lawn chair on the sidelines and cheer.

No matter how you decide to spend race day, I hope you’ll consider making a gift to our Miles to a Miracle campaign in support of my run, your run or a friend’s run. Your (100 percent tax-deductible) gift will go to a great cause – Batten disease research.

To make a donation to my Miles to a Miracle campaign, click here, scroll to the bottom of the page (where it says “Support My Cause”) and enter your donation amount in the space provided. If you plan to run, you can also set up your own campaign. Doing so is easy; to find out how, contact us!

While I can’t promise I’ll run the fastest on February 25, I can promise you this: I’ll run the hardest – for these 10 miles and for as long as it takes until we have answers for children like Taylor.

Run for Taylor on February 25!

By Laura Edwards

If you live within a reasonable distance of Charlotte (or if you don’t but like to travel!), you’re invited to join me for my hometown’s only 10-mile race on Saturday, February 25. I’ll bundle up in purple, the color of Taylor’s Tale, and run in honor of my little sister on what will be a chilly morning. The 10-mile distance is my favorite – I run the Tar Heel 10 Miler in Chapel Hill, NC each April – but it’s rare, so I was ecstatic when I heard about the Charlotte 10 Miler.

If the thought of running 10 miles sounds miserable to you, don’t worry – the event will also feature a four-mile run. The four-miler will start at 7:30, about 10 to 15 minutes prior to the headliner. Both races will begin by Urban Active in Ballantyne and follow south Charlotte’s McMullen Greenway to Four Mile Creek along gorgeous paved trails; they’ll end at the Earthfare on N. Community House Road. So if you’re not a runner, at least you know where to cheer! 🙂

The Charlotte 10 Miler officially benefits the Crohn’s & Colitis Foundation’s Team Challenge and the American Cancer Society. You can add a third cause, Taylor’s Tale and the lives of children fighting Batten disease, to the list by joining me on race day. All in all, there are plenty of reasons to run on February 25:

  • Support three amazing causes
  • Running is great exercise
  • Receive a free t-shirt if you register by Feb. 18 (everyone loves free t-shirts, right?)
  • Hang out with me 🙂

To learn more about the race (and register), click here. To learn more about running for Taylor’s Tale, contact us. I hope to see you on race day!