If You Have Wings, You Fly

Published: November 19, 2012 ~ 0

By Laura Edwards

I opened my eyes a few minutes before 5:30 a.m. on Saturday, Nov. 17 with surprising ease. I swung my bare feet out from under my warm down comforter and winced – but only a little – when they first hit the cold hardwood floor. First in the bathroom, then in the closet, I went through the robotic motions of brushing my teeth, splashing lukewarm water onto my sleep-deprived face, pulling my hair into a ponytail and trading my cotton pjs for compression tights and thin, sweat-wicking layers on top – purple for Taylor’s Tale. I coaxed my still-dreaming dog into the kitchen, where my friend Kelli and I toasted bagels and drank juice and wished for more time.

After snapping a few photos and checking our gear not once, but twice for good measure, we drove two miles to the nearest light rail station and, after 10 minutes in the teeth-chattering morning chill (we didn’t take jackets), snagged a ride to uptown Charlotte for the Thunder Road Half Marathon. Each time the train stopped, more runners joined us. As we rode, I thought about how I hadn’t really trained – at least not to the extent that I’d trained for other races. I thought about how I should have worn a top layer with pockets for tissues (I’d had a nasty head cold all week). I thought about how I could have stuffed extra moleskin and bandages into those pockets, too (I had a walnut-sized blood blister on the bottom of my left foot from a 10-mile run a week earlier).

As we got closer and closer to uptown, I threw my time goal out the window. And as the train coasted into our destination, I turned to Kelli and said, “I’m just going to have fun today. No pressure!”

As we stood inside the climate-controlled convention center, stealing a few minutes of warmth before the race began, I reached down to check the contents of my tiny waist pack one last time…except that I couldn’t open it. Somehow, the zipper got jammed, trapping my energy beans and Chapstick inside. Neither are super important in the grand scheme of things, but most runners are particular about their routines, and I’m no exception. And I have to have my energy beans and Chapstick when I go for a long run.

Somehow, though, I got over it. We made our way outdoors into the throng of thousands packed into a few city blocks, and when the race began at 7:45 a.m., we inched forward with the others until we crossed the timing mat, then walked till the pack leaders burst ahead, making room for the rest of us. And then, after what seemed like an eternity but in reality was likely about a minute, we broke free.

I knew right away that things would go better than I’d expected. The air didn’t seem nearly as cold as it did just moments earlier, and it felt good when it filled my lungs. Every time I approached a hill, I found an unexpected burst of energy. My head felt clear. My foot didn’t hurt at all. I settled into a fairly consistent pace of about 8:50/mile – a little slower than my typical pace for 10-mile races but faster than my fastest half marathon pace.

After a particularly long climb around mile five, I got a little winded. I never thought about walking. I did consider slowing down. But then, I thought about how Taylor ran part of the same course in her first 5K, in December 2008, and never once stopped to walk (even when she fell and scraped her knees). I remembered that one of my sister’s former classmates and his father were somewhere on the half marathon course at that very moment – running for her – and that they had vowed to run the entire way, because Taylor never gave up. I thought about Kelli, somewhere behind me, and a handful of others who’d dedicated their race to my little sister and her courageous battle against a disease that has stolen her ability to run (and so much else) since an incredible year in which she ran two 5K races and a practice 5K. I thought of all of those things, and I kept running.

Less than a mile before the finish line, I ran beneath the bridge where, during the same race two years ago, I approached a runner with a cane. Blind, he nevertheless completed an urban half marathon without the assistance of a guide. He provided the final push I needed to finish my race that day. This time, I had only my own will and the image of my little sister, fighting a demon of a disease at home, nine miles away.

No matter how a race goes, I always end with a dash to the finish line. As soon as the final timing mat and those six glorious letters come into view, I shift gears and finish with a hard sprint. But just as I began to make my break for the end of Thunder Road, I tweaked my left calf muscle. At that very moment, the pain felt so excruciating that I immediately thought I tore something. I never envisioned crawling across the finish line, but for a brief moment, I thought I might be forced to do so.

Somehow, though, I managed to jog-hop the last 100 yards of the 13.1-mile course. I finished with a time of 1:57:20, good for a new personal record (PR) in the half marathon. And as I wrapped myself in an aluminum blanket and poured water down my throat, I discovered that the pain in my leg was gone, replaced by an all-over feel-good sensation.

I know that I can’t run Batten disease out of Taylor’s life. I know that I can’t chase down a therapy for kids like my sister, no matter how much I train. I know that the running is mostly for me. It’s my therapy. But it’s darn good therapy; without it, I wouldn’t have the guts or the energy to fight this monster day in and day out. And if telling my crazy running stories translates into one more comrade for us in the fight against Batten disease, it’s all worth it to me.

The day after the race, of course, I paid the price for recording a new personal record with a head cold, the world’s biggest blood blister and a slack training schedule. But I didn’t care then, and I don’t care now. Taylor gave me wings. And if you have wings, you fly.

Touchdown for Taylor: Five Years Later

Published: November 9, 2012 ~ 0

By Laura Edwards

Five years ago tonight, a small but determined group of women known as “Taylor’s Tale” threw a huge party in honor of my little sister and kids everywhere fighting Batten disease. We called it “Touchdown for Taylor.”

Touchdown for Taylor house

When guests arrived, Sir Purr, the Carolina Panthers mascot, greeted them on the steps of the beautiful home of our gracious hosts.

Inside, they mingled with former Batten Disease Support & Research Association director Lance Johnston and researcher Sandy Hofmann, MD, PhD, who had just gotten a $50,000 grant from Taylor’s Tale – the birth of a project of paramount importance in the fight against infantile Batten disease.

They heard a special message from NFL commissioner Roger Goodell and watched a slideshow of my then 9-year-old sister’s life that still chokes me up. They heard from my mom. They heard from me.

They heard a great band, enjoyed each other’s company and ate incredible food.

They gave my family, just a little more than a year removed from Taylor’s diagnosis, a fire for the fight that burns to this day. And at the end of the night, they gave Taylor’s Tale $40,000 for that fight, matching our first-ever event, “Chapter One,” nine months earlier. Just as importantly, though, they energized us. They energized me. They helped me believe in my own words when I told people we’d find a way to beat Batten disease.

Taylor is not the long golden-haired, sighted, chattering, singing fourth-grader my parents left at home with a babysitter on the night of Touchdown for Taylor. But she still has every ounce of courage she had back then.

And we’re still fighting.

Watch the Video Message from NFL Commissioner Roger Goodell

View More Photos from Touchdown for Taylor

Read My 2007 Blog Post about Touchdown for Taylor

Uncommon Magic

Published: November 5, 2012 ~ 2

By Laura Edwards

During 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.

certificate

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

Published: October 29, 2012 ~ 0

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.

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!

Unfinished

Published: October 20, 2012 ~ 2

By Laura Edwards

During the spring of my junior year of college, I penned the first chapter of a novel for young adults for a class assignment. I stayed up all night to write it just hours before I had to turn it in – and I’d been given nearly the whole semester to work on it – so at first, I hardly expected it to go anywhere. But after sunrise, when I read what I’d written, I discovered I had something good on my hands. So I took the book on as an independent study project during my senior year and churned out close to 200 pages – a chapter a week.

When I graduated, I’d finished about two-thirds of my novel and had the last third written in my head. But when I got back to Charlotte, I started working full-time in public relations and marketing, coaching a soccer team that traveled on the weekends, covering sports for the local paper and planning my wedding, and the book sat on my hard drive…just sleeping, I told myself. I vowed to find a way to finish it as soon as I got married.

But then of course, John and I hadn’t even finished writing our thank you notes when my family got Taylor’s Batten disease diagnosis, exactly one month after the wedding.

In the book, the main character’s mother is diagnosed with terminal brain cancer.

When I learned about my sister’s illness, I thought that maybe we had enough non-fiction brain disease to go around. So when friends asked me about the book, I told them it’d been a nice ride while it lasted, but the ride was over. And I traded in those weekly chapters for (almost) weekly blog posts about our fight against Batten disease for the next six years.

A few months ago, I was up late (like tonight), and before I realized what I was doing, I pulled up my manuscript and randomly scrolled to page 136. Amazed, I saw that I’d gone directly to the moment in the story when, for the first time, the main character fully comprehends the strength of the enemy her family is up against. What transpires is a raw, intense night that changes the lives of the central character and her family forever.

Sometimes I wonder why my book took the twists and turns it did. I wrote most of it, including that chapter, at 21. My grandfather died of heart disease during my ninth grade year, but otherwise, I didn’t have experience with tragedy. I’d never heard of Batten disease, though the monster hid unseen in my little sister’s genes even then. I didn’t really know that much about loss.

When I read that chapter, I suddenly knew: I wanted, NEEDED, to finish the book, regardless of the non-fiction brain disease that now wreaks havoc on my real-life family every day.

When I wrote that chapter nine years ago, I had to imagine how my characters would feel.

I won’t have to use my imagination now.

Priceless

Published: October 5, 2012 ~ 2

By Laura Edwards

My cousin, Morgan, is a fifth grader. Each night when my Uncle David gets home from work, he gives Morgan and her little sister, Madi, all of his loose change for their piggy banks. One day, Morgan told David and my Aunt Holly that she didn’t want to keep the money anymore. She made a box with a slot in the top for coins and dollar bills; she wrote ‘Taylor’s Tale’ on the outside of the box, and from that day forward, Morgan collected her daddy’s loose change for the fight against Batten disease.

David sits on the Taylor’s Tale board of directors. We had a board meeting last night, and David arrived with a storage-size Ziploc bag bearing about $70 in heavy coin rolls, wrinkled, cotton-soft bills and crisp, new bills.

Some people might read this and think, “Seventy dollars won’t take you very far. It won’t even buy you a well check-up. Life-saving treatments cost a lot of money.”

I’d say they’re half right. Life-saving therapies – the kind that could change the future for kids like Taylor – DO cost a lot of money.

But there’s something priceless about a fifth grader who can read fat novels and swim like a fish saving up all that loose change to help save kids her age who can’t see, talk or walk.

And if enough people had Morgan’s heart of gold, we’d be that much closer to writing the happy ending to this story.

Pink…for One Heck of a Price Tag

Published: October 1, 2012 ~ 7

By Laura Edwards

Each October, the NFL celebrates Breast Cancer Awareness Month by going pink. Pink ribbons adorn the footballs and fields. Players wear pink chin straps, arm bands, towels, helmet stickers, gloves and cleats. Coaches wear pink hats. Referees blow pink whistles. Captains wear pink patches. Kickers boot field goals through goalposts mounted on pink bases.

Breast cancer is a terrible disease. Stage IV breast cancer’s five-year survival rate is just 15 percent. I hate any disease that steals people’s lives before they’re done with this thing we call living. Disclaimer: I’ve never lost anyone I love to breast cancer – though I’ve lost people I love to brain disease, heart disease and other equally horrendous things. But still, I hate breast cancer. One of my best friends lost her mother and older sister to breast cancer. I don’t have my own battle scars from breast cancer, but I’ve met it before. I know its name.

And yet, every year when October rolls around, I reevaluate this whole NFL pink initiative, and every year, I come to the same conclusion: I find it to be an incredible waste of money. Peter O’Reilly, the league’s vice president of fan strategy and marketing, says the NFL spent about $5 million on advertising and gear for the initiative JUST THIS YEAR.

Do you know what the rare disease community could do with $5 million?

If I could write a $5 million check to the world’s best Batten disease experts, I believe in my heart that they’d give us a treatment that works.

It probably wouldn’t be in time for my sister. But we might have a chance to save the children who aren’t as affected…children whose families sit where we sat six years ago. Weighed down by tragedy. Lifted up by hope for the future. For the possibility that Taylor could be different…that she could survive. We could rewrite the futures of the children who have yet to be born. We could change the face of Batten disease – an indiscriminate killer. Its survival rate is zero percent.

I repeat: breast cancer is a terrible disease, and while not nearly as common as some diseases, such as heart disease, it affects far more people than Batten disease. I’m not proposing that we stop supporting breast cancer research in favor of Batten disease research. Not one bit.

But if the NFL has $5 million to support a disease, why spend it on cleats? No matter what disease you’re fighting, awareness is incredibly important; just ask my family and friends or the Taylor’s Tale board of directors how much I push our awareness efforts. But at the end of the day, you don’t save lives with taglines and pink chin straps. You save them with smart research and strong advocacy efforts and strategic awareness tactics that rely on the strength and the magic of a great story.

That’s where I think the NFL misses the point. The league could still have an incredible impact by spray painting pink ribbons on fields, putting pink ribbon patches on jerseys, giving coaches and staff pink ribbons to pin on their shirts, and asking the broadcast team members to don pink threads – all for very little green. They could even air short interviews with NFL players and staff who are directly affected by breast cancer. Carolina Panthers running back DeAngelo Williams is a vocal supporter; his mother is a survivor, and he lost four aunts to the disease. A heartfelt message from a football star about the importance of getting a mammogram would mean something to fans.

The rest is just expensive noise. How many of the millions watching NFL football today have forgotten – or never seen – the true faces of breast cancer? The women – and yes – men – who fight courageous battles against the disease each and every day? That’s the stuff of legend – the stuff that will resonate with people – long after the players, coaches and refs resume wearing color-coordinated gear and the pink ribbons disappear. How many people never meet the stars of the story or learn a single thing about breast cancer risk factors but can proudly tell you that breast cancer’s signature color is ‘pink?’

Another Season

Published: September 26, 2012 ~ 0

By Laura Edwards

I just returned from a short trip to Great Smoky Mountains National Park, which straddles the North Carolina – Tennessee border. Septembers in this part of the country are generally mild, and the Smokies are still carpeted with vibrant green leaves. But when we hiked to the summit of Mt. LeConte (6,593 feet) on our last full day in the park, we found random bursts of fiery reds and golds. Where the mountains reached for the sky, the leaves were just beginning to burn, and nature promised the arrival of another season.

As I paused to take in the endless views at the summit and along the trail, I felt the deep sense of appreciation I always get for the gift of sight – something my little sister, Taylor, no longer has. I remembered a fall day on which she jumped into Dad’s piles of leaves with unbridled joy. A day in another lifetime.

I also thought about how, as one season ended and another began on that mountain, so began another season of unknowns back home in Charlotte for my sister and our family. Since Taylor’s Batten disease diagnosis, every year has presented its own set of challenges. More than six years have passed since the diagnosis; now, each month is Pandora’s box. As time goes on, Batten disease grows stronger, and we can no longer take years, months, weeks or even days for granted.

A deciduous tree loses its leaves each autumn. Often, this is a beautiful process. The tree becomes an artist’s palette of orange, crimson or gold. Soon, the transformed leaves fall to the ground – sometimes in chunks, other times alone, until the branches are bare. In the spring, the tree is reborn, and the process begins again.

I have watched the leaves fall from Taylor’s stunningly beautiful tree since before I first heard of Batten disease. But unlike the trees atop that mountain I hiked or the ones here at home, my sister will not get any new leaves.

Never Forget

Published: September 11, 2012 ~ 0

By Laura Edwards

On the morning of Sept. 11, 2001, I sat in a poetry writing class at the University of North Carolina as fiery, unspeakable events unfolded in New York City, Arlington, VA and rural Pennsylvania. None of us had smart phones in those days, so when our teacher dismissed us, I walked outside and headed for my next class just as I would have done on any normal Tuesday. At the time, I didn’t notice the deserted quad, normally bustling with students at that time of morning.

When I climbed the steps of the journalism school and walked inside, I found what appeared to be the entire student body, crammed into the building lobby but yet strangely silent. They all stood frozen, their eyes transfixed on the journalism school’s large projector TV screen, where two commercial jets crashed into the twin towers of the World Trade Center, again…and again…and again.

I remember when our professor’s voice broke the silence to announce that class was cancelled. But I don’t remember the rest of those kids clearing out of the building. At some point, I did float out of that lobby alone, away from those terrible images and onto the steps of the journalism school, where I found the quad deserted for the second time in one day. My body, guided by some power other than my own, eased down into a sitting position, at which point my 19-year-old lungs breathed in the crisp, clean air of a late summer day on an American college campus, and my innocent eyes drank in the image of an unmarred blue sky dotted only by the soaring, leafy green treetops that watched over bright minds and moonlit strolls and games of Frisbee.

In those moments, on that impossibly beautiful day, I realized our world would never again be the same.

On the morning of July 24, 2006, I sat at my desk at a hospital in Charlotte, NC – eight months into my new job and one month into my marriage to my high school sweetheart. It was a hot but beautiful day, and everything, so far at least, had fallen into place for me. My world overflowed with happiness and possibility.

When my phone rang a few minutes after 10 a.m. – about the same time I learned of the 9/11 attacks – I heard the phrase “neuronal ceroid lipofuscinosis” for the first time – and my world changed forever.

My parents live eight miles from the hospital. I climbed behind the wheel of my car shortly after taking that call, but I don’t remember a single moment of the drive. Somehow, a force from some deep, unknown place guided me home, where I was most needed.

I do, however, remember every single moment from the rest of that fateful day.

The tear-soaked embrace in the floor of my parents’ bedroom.

Seeing my little sister – and feeling alternately overjoyed and crushed knowing she was completely unaware of the deadly disease within her – when we picked her up for her therapy appointment.

Building matching teddy bears with Taylor at the Build-a-Bear Workshop, making a wish for her life, stuffing it deep into the bear before sewing it up tightly…and not feeling silly at all.

It’s amazing how, in a matter of seconds, our lives can transform from being buoyed by hope and joy to being warped by pain and the pure cruelty of fate. It’s amazing how quickly our concept of what’s most important can change.

Today and every day, I remember those who lost their lives on 9/11 and those whose lives have been impacted by the tragedy. I am grateful for all those who make it possible for us to feel safe. And though the news clippings may fade, the memorial crowds may shrink and the stories may become more few and far between, I will never forget.

Today and every day, I fight my own battle for my little sister, in hopes that one day, the worlds of children like her and families like mine will not be shattered in a single moment. And though my body may grow tired and – yes – I may lose her – I will NEVER FORGET.