Running for Taylor: Finishing 2014 Strong

Published: September 28, 2014 ~ 0

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.

With Oregon and Tennessee crossed off the list, I’m looking ahead to the remainder of 2014 and beyond. Here’s what I have in the works:

Great Pumpkin 5K Race – Saturday, Oct. 25 in Rock Hill, South Carolina

I don’t run many 5Ks, but I signed up for the Great Pumpkin 5K Race, a small event hosted by the Rock Hill Striders just inside the South Carolina border, because I want, almost more than anything where running is concerned, to see my sister at the finish line of a race. Taylor hasn’t been able to come to one of my runs since I logged 13.1 miles on a quarter-mile loop around the town green in Davidson, North Carolina for a Batten Disease Support & Research Association fundraiser in June 2012. But Rock Hill is 20 minutes from my parents’ house, and the race starts later than most, so we’ve got a shot. I’ll wear a purple Halloween costume that captures the spirit of Taylor for the Great Pumpkin 5K. Have ideas? Let me know in the comments! Want to run with me? Sign up here!

Charlotte’s Thunder Road Half Marathon – Saturday, Nov. 15 in Charlotte, North Carolina

I’m not running Thunder Road blindfolded this year, but I’ve been signed up for the half marathon since registration opened in January. Playing for Others, the wonderful teen organization that made our cheer station come alive at the 2013 race, is supporting us again this fall. They have something new up their sleeves; I’ll be sharing their plan in a future post, but for now, you’re invited to join us by registering to run the 5K, half marathon or full marathon for the Taylor’s Tale team. Sign up here!

Huntersville 5K Guinness World Record Attempt

On Saturday, Dec. 13, the Charlotte Running Club will attempt to break the world record for most runners tied together while completing a 5K race. The current record stands at 116 runners, and the club hopes to have at least 200 runners. After running Thunder Road blindfolded and tethered to my good friend Andrew Swistak last year, I couldn’t resist signing up to be part of this cool event. You can still join us! You don’t have to be a Charlotte Running Club member, and there’s no cost to participate on the team, though you have to register for the race. For the $20 registration fee, you’ll get two t-shirts (race t-shirt and Guinness World Record attempt t-shirt) if you register by Nov. 8. Send an email to run.charlotte@gmail.com if you’re interested in being on the team. Do this before you register!

To 2015…

I’ve already registered for five races in 2015 including events in four states outside my home state of North Carolina. Taylor’s courage inspires me to run farther and work harder in all that I do. I can’t wait to share more of this journey with you! Want to stay up to date on my quest to run in all 50 states for the fight against Batten and other rare diseases? If you haven’t already, subscribe to the blog to get updates. Thanks for your support!

Running for Taylor in 50 States: Tennessee

Published: September 21, 2014 ~ 8

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 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.

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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.