Running for Taylor in 50 States: Tennessee

Published: September 21, 2014 ~ 8

By Laura Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

I kicked off my quest at Oregon’s Crater Lake Rim Run on August 9; on Friday, I drove to Tennessee’s Great Smoky Mountains National Park for race number two.

John and I stayed in Townsend, the host town for the inaugural Great Smoky Mountains Half Marathon. Known as the “peaceful side of the Smokies,” Townsend sits at 1,070 feet, an average of 6,000 feet lower than my August race. Crater Lake is one of the most gorgeous places I’ve ever been, but Townsend’s smoky blue hills are more like the mountains I grew up climbing, and my Achilles tendinopathy and calf tightness gave me a lot of trouble in the week leading up to the race, so I was thankful for East Coast elevation and the “gradual hills” promised in the race guide.

Taylor has never been to Tennessee, but the Smokies are a subrange of the Appalachian Mountains, and North Carolina’s Appalachian Mountains have always been one of our favorite places to spend time together. John and I were married in a charming mountain town called Blowing Rock; my sister loved to play on the town park’s swings in the summer and drink hot chocolate at Kojay’s Cafe in the snowy winters. It’s close to impossible for my sister to travel these days (I’d hoped my mom and Taylor could go to the race in the Smokies with me, but it didn’t work out), but the Appalachian Mountains hold a lot of happy memories for my family. You might remember that for the Oregon race, I wore a string of beads Taylor made for me while she recovered from surgery at Oregon Health & Science University. For the Great Smoky Mountains Half Marathon, I packed a purple heart necklace my parents bought for Taylor at Blowing Rock’s Cone Manor.

On race morning, I awoke early to prepare. You may know that I’m ultra-competitive, but for this race, I’d made a pact with John that I would focus on finishing the race without injuring myself further, sharing Taylor’s story and getting home safely. While John slept in the dim hotel room, I used a foam roller and pleaded with my calves to loosen, and I said a silent prayer over my Achilles. I flipped on a small light and wrote my signature “4TAYLOR” on my arm in purple ink (I won’t let anyone else do it). I filled my purple Camelbak with water and laced my just-broken-in purple Brooks Glycerin shoes. Everything, even down to my Garmin watch, was purple or pink (Taylor’s favorite colors). After I pinned on my bib, I slipped my sister’s necklace over my head.

I felt tight through the playing of the national anthem, the sound of the starting gun and the race’s first turn. But as the course opened up, I saw the sunrise flooding the sky behind the mountains, an open field stretching out like a blanket beneath it. It looked like heaven. I felt my sister’s heart against my heart. And suddenly, my legs didn’t hurt anymore. I found my stride, and I kept it.

John surprised me around mile marker three at one of several bridges on the course. It made me so happy to see him; as much as I love to run, distance running can make for a lonely journey, and a rural course doesn’t have the constant crowd support of an urban race. Rather than lines of fans three-deep, the landscape looked like this:

John came to the last bridge at mile eight, and it’s a good thing he did. His support gave me the emotional boost I couldn’t get from my CLIF Shot Bloks, and the next three miles were the toughest of the race. In addition to a steep climb, they were on curvy, severely banked mountain roads that reminded me of the ones I ran at Crater Lake. I felt a huge blood blister forming on my right foot as my right side took a constant pounding. I thought about my left Achilles and thanked God the road wasn’t banked the other way. At mile nine, I couldn’t help it: I speed-walked two of the hills. A year ago, I wouldn’t have dared walk in a race. But I’ve gotten older and wiser (and more injured); I’ve learned that this 50-state quest is a marathon, not a sprint, just like Taylor’s fight against Batten disease and our fight for a better future for the millions suffering from a rare disease. If we give too much too quickly, we won’t have any gas left in the tank for the next mile; we won’t survive to see the finish line.

Eventually, the finish line of the inaugural Great Smoky Mountains Half Marathon came into view. I didn’t sprint for fear of popping my injured Achilles, but I gave it a little extra and ran across the finish line like I hadn’t just run 13.1 miles. Injuries, speed-walking and all, I finished with my second-best half marathon time ever (but still seven minutes off my PR).

I told John there was no way I’d won an award. My age group (30-34) is usually the toughest, and at this race, it had the most runners by a long shot, with 107. But it was a gorgeous morning, there was a bluegrass band playing, and our hotel had granted us an extended checkout. So we decided to stick around just for the heck of it.

The race gave awards five-deep. Once they’d given out medals for fifth, fourth and third place in my division, I started to walk away. That’s when they called my name for second place. John let out a loud whoop, but I was still in a daze as I walked up to get my silver medal.

A lot of people would have taken the rest of the day off, but that’s not my style, maybe partly because Batten disease has shown me how short life can be and how precious each day really is. In any case, after a quick shower and an unhealthy lunch (cheeseburger, French fries, root beer float and chocolate truffles), John and I loaded our packs, drove to another area of the park and hiked one of its steepest trails. After we scrambled up the bare stone face of Chimney Tops like a couple of mountain goats, I pulled out my medals and race bib for one last photo. I knew that when I got back home, I’d return to two distinct battles against Batten disease. In one of those battles, Taylor’s Tale and other advocates are gaining ground every day. I believe that with all of my heart. In the battle that hits closest to home for my family and me, we’re losing — and no medal I win can change that.

But for that moment in time, I was on top of the world.

Make a tax-deductible gift today and help write the happy ending to Taylor’s Tale.

The Passage of Time

Published: September 9, 2014 ~ 5

By Laura Edwards

My grandmother, Margaret Rodwell King, died peacefully on August 31. My dad asked me to give a eulogy at her memorial service. It wasn’t until after reading my own words aloud in our church sanctuary yesterday afternoon that I realized how much they were influenced by my family’s battle for Taylor, the lessons my grandmother taught me and the love that serves to guide us through an imperfect but beautiful world.

My Grandma Margaret was an accomplished woman. She was a Duke graduate, a community leader, and a political dynamo. She worked hard for a cause she believed in and mentored others throughout a volunteer career that spanned more than 50 years, and she did it without asking for anything in return. She was an outstanding public servant, a wonderful role model, and a loyal friend.

But to me, she was just Grandma Margaret. And while she may have been a rock star campaign manager and a hall of famer and a university trustee, none of that mattered to me. Because when I was a kid, she made the world’s best grilled cheese sandwich.

I grew up five minutes from my grandparents’ house in Barclay Downs. It had a pool table and a pinball machine, a turtle pond and a big-screen TV with a Sega Genesis video game system, and a Laserdisc player that rated as high-tech when I was growing up. It was the ultimate playground for kids.

The best part, though, just might have been my grandmother’s grilled cheese sandwiches. She used Pepperidge Farm white bread, real butter, and American cheese melted just so. And she had a magic pan.

I can’t tell you what makes a frying pan magic or where you purchase such a thing. But Grandma Margaret said hers was magic, and I believed her. She wouldn’t make my grilled cheese sandwiches in anything else. If the pan was dirty, she broke out a sponge. When we went to the beach, the pan went, too. The pan’s “magic” came to symbolize the magic of long hours spent at the house on 431 Scofield Road and lazy weeks in the condo at Windy Hill Beach.

The passage of time is a funny thing. They say the more things change, the more they stay the same. But I’ve come to understand that some things just change.

Some years after my Granddaddy Parks passed away, Grandma Margaret moved out of the house on Scofield and into an apartment at Merrywood.

I don’t know what became of the magic pan.

When she was still finding her way at her new home, my grandmother took a journaling class. One of her first assignments was to write a letter to someone – God, a neighbor, family member, friend, opponent, someone she admired…

Grandma Margaret with the girls She wrote a letter to my sister Taylor—out of all of her grandchildren, probably the one she got to know the least well.

In it, she wrote of finding her place at Merrywood; she lamented that she could not see my sister more often, but said she understood that growing up and going to school could keep a person busy. She suggested Taylor write a letter to her sometime.

I’ll never get to ask her why she chose to write to my sister.

Maybe she wished she’d gotten to know Taylor better or had opportunities to spend time with her like she did with the rest of her grandchildren. Taylor was so young when life changed for Grandma Margaret; my sister never even met my Granddaddy Parks.

Our time here together is short, but that only serves to make the experiences we have that much more meaningful.

Hold the people you love close to your heart. Cherish each day.

I’m so thankful I had the time with my grandmother that I did.

And I thank God that today, she’s at peace.

The One who Lost the Most

Published: September 3, 2014 ~ 10

By Laura Edwards

Some of my coworkers stayed late at the office tonight for their annual fantasy football league draft. When the email went out a couple of weeks ago, I considered joining in. I thought it’d be fun to show some of the guys this girl knows a thing or two about NFL football.

But I decided I couldn’t add one more thing to my plate, opting instead to live vicariously through my husband, who plays in two leagues (this past Sunday night, I shared my draft pick recommendations between working on a book manuscript and hammering out travel details for upcoming races).

The truth is that I’ve been “too busy” for a lot of things for most of my adult life. Fresh out of college, I moonlighted as a sportswriter in addition to working a full-time job in marketing and public relations, coaching a traveling soccer team and planning a wedding. The young adult novel I’d started writing my senior year languished on my hard drive, and I figured I’d finish it as soon as I got married.

A month after my wedding, Batten disease happened.

Suffice it to say, I never finished the young adult novel. At first, I blamed it on the plot line (one of the main characters is dying of brain cancer). Then, I blamed it on all of the other things that clamored for my time. I was just 24, with a good job, a new husband and a “five-year plan.” But suddenly, I’d joined my mom and a small team of volunteers on an inspiring but terrifying mission to build an organization from the ground up and challenge a fatal disease with no cure head on. I was the girl who said she’d never join the Junior League, but before I knew it, my calendar was filled with committee meetings and fundraisers. I was a lifelong introvert, but a few months after Taylor’s Tale was founded in my sister’s honor, I was speaking to crowds.

The struggle for balance is never-ending. I used to worry that if I shut down my laptop too early on a weeknight or gave myself the day off, I was shorting my sister a chance at survival. I don’t do that anymore, but I do think about how much we can do as a society to build a better future for the millions like Taylor and how much we’re NOT doing. I think about how I can be the very best advocate for the rare disease community and the very best big sister to Taylor. I do worry that at times, I’ve been a better advocate than a sister. I know that while I “gave up” a lot of my 20s and early 30s, I made that decision on my own – and I’ve still managed to have a pretty great life, though I’d like to get more sleep occasionally.

These past eight-plus years haven’t been easy, and I’ve learned a lot of tough lessons, the toughest of which may be this:

I’m not the one who lost out, because I’m not the one who got Batten disease. My sister did, and she’ll never have many of the opportunities or experiences I’ve been blessed with. But she’s taught me more about life than I could ever hope to teach her.

Sweet Sixteen

Published: August 18, 2014 ~ 22

By Laura Edwards

birthday cake Tomorrow (August 19) is Taylor’s 16th birthday. In honor of my little sister’s Sweet Sixteen, I’m asking my readers to do at least one of the following:

Leave a birthday message for Taylor in the comments below; I’ll share each one with her.
Tell at least one person about Batten disease (learn more here).
Like Taylor’s Tale on Facebook and follow us on Twitter.
Wear something purple on Tuesday. Tell friends why you’re wearing purple (the color for Taylor’s Tale) and post a photo on social media with a link to this blog.
Make a gift to Taylor’s Tale to support our efforts on behalf of millions like Taylor fighting a rare disease. All gifts are 100 percent tax-deductible. Donate here.
Go for a run and dedicate your miles to Taylor, who once ran two 5K races after losing her vision to Batten disease (her courage inspired me to run a half marathon blindfolded last year, and I just kicked off a quest to run a race in all 50 states). Share a post about your run for Taylor in the comments below and on social media.

Happy early birthday to the best sister in the world. I love you, T!

Running for Taylor in 50 States: Oregon

Published: August 11, 2014 ~ 9

By Laura Edwards

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

I needed a place to begin.

On Saturday, I kicked off my quest in the only state that ever entered my mind:

Oregon.

In January 2008, Taylor helped give millions hope when she took part in a six-patient, phase one clinical trial in Oregon. The stem cells injected into her brain didn’t save her, but the lessons she shared will help save people suffering from other diseases one day. I started running for my sister because of her courage 1) in the operating room that cold January day and 2) on the 5K race course 11 months later.

Oregon’s Crater Lake, one of our country’s pristine natural wonders, sits about 6,100 feet above sea level. For 38 years, runners have gone to Crater Lake National Park for the Crater Lake Rim Runs, which circle the lake at altitudes of up to 7,850 feet and include breathtaking – literally – elevation gains and losses of up to 1,000 feet at a time.

My parents and Taylor found solace at Crater Lake during Taylor’s time in the trial; of course, my sister couldn’t see the otherworldly blue of the lake’s snowmelt water since Batten disease stole her vision, but then again, Taylor has always found beauty in unexpected ways.

I registered for the 13-mile rim run in January, almost six years to the day after Taylor’s historic surgery.

This past Saturday, August 9, I felt anxious as I stood on a ridge in the park and watched the sun rise over the lake, wondering if a few months of hill training in my hometown of Charlotte (and one morning in the North Carolina mountains) had been enough. I felt the plastic beads on the wire necklace around my neck, a gift from my sister; she and the hospital’s child life specialist made it days after her surgery in Oregon.

When I climbed the first hill of the race, my soul came spilling out on the steeply banked national park road beneath my feet, my tears hot in the chilly air. I cried behind my sunglasses in a sea of people, but I pumped my legs and arms, and I nailed the hill.

The lake changed colors as the sun climbed higher in the sky. I found myself stopping to take photos, wanting to remember certain moments and not trusting my mind, racing with emotion, to capture everything.

Around mile seven, I faced the steepest hill yet. My lungs gasped for thin air, and my leg muscles burned. My competitive nature fought the urge to walk until I realized everyone was walking. I let myself walk for one-tenth of a mile.

It wouldn’t be the last time. The 13-mile race’s most punishing hills are in the last three miles. When my body screamed for mercy, I felt Taylor’s beads against my heart. I walked as fast as my legs would go. When I could run, I ran like hell.

The final three miles of the 13-mile course are the toughest. As I began the ascent to Mt. Scott, the highest peak in the park, I passed a runner on my left; his kind eyes and genuine smile gave me another push, and as I ran by, he said, “Great job.” I ran the final quarter-mile for a 2:14 finish – 27 minutes off my personal record for the half marathon but good for fourth place in my division on Crater Lake’s punishing course.

When we watched the surgical team wheel my sister back to the operating room on that cold day in Portland in 2008, we didn’t know what would happen. Maybe it was crazy to send a kid at a less advanced disease stage through such a harrowing surgery with no promises.

But that trial was about believing – about having faith in a better future and knowing it gave us a better shot than if we did nothing.

That’s what these runs are about, too. That’s why I started in Oregon. I know running a race won’t save my sister. Who am I kidding? I can’t save a life with a fourth place or even a first place finish, and I don’t have a PhD or a miracle drug or a magic wand.

But sometimes, we have to let go and realize we don’t have control over everything. We have to have faith. When we believe, and when we’re willing to work for what we believe in, good things can happen.

John and I took a boat out to Wizard Island on the lake on Sunday. While there, we met a woman from Oklahoma who ran the full marathon on Saturday. She saw my Taylor’s Tale wristband and recognized the name because she saw John’s shirt during the race. She lost her son to a brain disease. We had a wonderful conversation in the Oregon sunshine. Below the island’s volcanic rim, we met a nice couple from Beaverton who took our picture. She is a nurse at OHSU in Portland, where Taylor had her surgery. In the time it took to snap a few photos, two more people learned about Batten disease.

Just as it took hundreds or even thousands of years to fill Crater Lake, once a massive volcano that erupted and collapsed into the earth, it may take a thousand small steps to get to the finish line of this fight – to build a better future for people like Taylor. But when we do, like the blue of the water that fills one of the purest lakes in the world, it will be more beautiful than you or I can describe.

The Only Race that Matters

Published: August 4, 2014 ~ 2

By Laura Edwards

This spring, still feeling the high from crossing the finish line of Charlotte’s Thunder Road Half Marathon with a blindfold over my eyes, I decided that while there would never be another Thunder Road, I wasn’t done running for my sister.

On National Running Day, I shared my goal of running a race in all 50 states to honor Taylor’s fight against Batten disease and raise awareness of the millions like her suffering from a rare disease.

I’m almost ready. I put myself through an atypical (for me) training regimen for my first race, and I nearly made it. For the past month, I’ve been dealing with a pesky foot injury that may or may not be a stress fracture. The X-ray came back negative, and I’ve gone on a couple of longish runs without pain, so I’m going to give it a go when the race rolls around. I don’t know that I’ll post a speedy time (then again, sometimes I say that only to turn around and set a PR).

But as Mom and a friend reminded me in two separate conversations in the past 24 hours, my speed doesn’t matter. It never has, and it never should. Taylor wouldn’t care if I came in first or last. If we’re talking about a footrace, all that matters is that I give it my best every single day, even if that means I have to crawl.

In fact, if we’re talking strictly about winning and losing, the only personal race that ever really mattered was the race to save my sister’s life. And every day, I live with the knowledge that I’m losing that race.

But there will always be another Taylor.

That’s why I’ll keep chasing the monster that’s beating us.

Wouldn’t you?

Stay tuned for details about my first race in the challenge to run in all 50 states for the fight against rare diseases! Click here to make a tax-deductible donation in support of Taylor’s Tale, the non-profit organization founded in my sister’s honor.

A Lifetime of Lessons

Published: July 24, 2014 ~ 0

By Laura Edwards

Eight years ago today, my little sister was diagnosed with infantile Batten disease. This photo was taken several months later. We caught a hayride to a pumpkin patch on a farm, and she helped me pick out the perfect pumpkin.

pumpkin patch

Back then, Taylor still smiled for the camera and blinked in bright sunlight. She talked a mile a minute and ran up and down the stairs with her dog at her heels. She went to school and danced with boys under a disco ball in the school cafeteria. She went to the mall with her girlfriends on the weekends.

Since then, she’s taught me a lifetime of lessons about faith and courage. Batten disease may be winning this battle, but Taylor’s still fighting. I think I’ll keep fighting, too.

back porch

Fighting a Chronic, Terminal Disease

Published: July 16, 2014 ~ 0

By Laura Edwards

An article reprinted from the Washington Post was on the front page of a newspaper lying on the kitchen island at my office this morning. I never read the papers in the kitchen (and I’m in PR), but the headline caught my eye.

“Living with a husband’s chronic illness has a bad effect on his wife’s health,” it said. I set down my water, picked up the paper and scanned the article. My eyes immediately landed on a quote about halfway down the article.

“Terminal illness has an end date. Chronic illness is enduring.”

Yes, that’s true, I thought. But what if the illness you’re fighting is both?

I’ve written a blog and most of the print and electronic communications for Taylor’s Tale since our founding more than seven years ago, not long after my little sister’s diagnosis. Mom never wanted me to use the word “terminal” when writing about Batten disease; she preferred that I say “life-threatening.” She said “terminal” felt cold; sterile; hopeless. She’s right. But right now, that’s how a Batten disease diagnosis feels. That’s how it feels in my chest when I see what it’s done to my sister in eight years.

The life we live afterward doesn’t have to be. Though I’m realistic about my sister’s situation, I believe in what we’re doing even more than I did from day one because of what I’ve learned. And if I had it to do all over again, I’d fight just as hard for Taylor’s life even knowing what I know now. Because I know that someday, soon, “terminal” won’t be an appropriate label for this godforsaken disease.

Help Us Get on the Cover of Runner’s World!

Published: July 12, 2014 ~ 7

By Laura Edwards

I need your help!

As you likely know, I ran Charlotte’s Thunder Road Half Marathon blindfolded to honor my little sister, Taylor; my next challenge is to compete for her in all 50 states, beginning with an epic race later this summer.

Our story has a chance to be on the cover of Runner’s World magazine. This kind of exposure would be amazing for our fight to save millions suffering from rare diseases. That’s where you come in.

Click here to vote for our story. It takes five seconds, and no app download is required. Vote EVERY DAY between now and Aug. 15. We’re in the top 10 right now, but we won’t win without your support. So, share this with everyone you know, and vote often. Thanks so much!

Here is a copy of my entry:

HOW DID YOU START RUNNING?

I’ve been running for most of my life and played competitive soccer through college, but I didn’t start entering races regularly until watching my little sister, Taylor, battling a fatal brain disease that causes blindness, run her first 5K at age 10 in 2008. Running gave Taylor a chance to be a “normal” kid, and I love it for that. At the finish line that day, I made a silent promise to run for Taylor as long as possible, both to honor her incredible courage and to raise awareness of Batten disease, the illness that will take her life.

WHAT IS THE PERSONAL RUNNING ACCOMPLISHMENT YOU ARE MOST PROUD OF?

In November 2013, I returned to the event where Taylor ran her first 5K. To honor the fifth anniversary of her brave 3.1-mile run, I wore a blindfold bearing the phrase “4Taylor,” which I’ve inked on my arm for all of my races. With a guide, I ran the half marathon blindfolded in under two hours. I ran portions of the race “untethered,” and my team and I raised money and gained national exposure for Taylor’s Tale, the non-profit organization I co-founded in Taylor’s honor. My next challenge is to run a race in all 50 states for Taylor.

WHY IS RUNNING IMPORTANT TO YOU?

Aside from the fitness benefit, running is a great way to relieve stress, and I do some of my best thinking on the run. Most of all, it helps me feel close to my little sister, who can no longer run because of her disease. During my blindfolded half marathon, I ran untethered several times, and I never felt closer to Taylor than during those stretches. I imagined her next to me, healthy, her legs in sync with mine, her voice dancing on the wind, her eyes drinking in the earth.