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.

Love

Published: September 6, 2012 ~ 1

By Laura Edwards

This week, Taylor’s good friend, Charlotte, invited her to cheer from the stands at her school volleyball game and join her and the other girls for burgers afterward.

Taylor ate school lunches and walked the halls with those girls for six years. This year – ninth grade for all of them – six years post-Batten disease diagnosis – my parents faced a cruel decision.

Those girls aren’t my little sister’s classmates anymore. But when I saw this picture, I discovered that they still love her. And I loved them for it.

Each and every day, I grieve for what could have been.

A normal high school experience for Taylor.

A long and happy life.

Every once in a while, a small miracle comes our way.

Sometimes it comes in the form of opportunity…of hope.

Sometimes it comes in the form of love.

Just love.

Playing with Passion

Published: September 3, 2012 ~ 3

By Laura Edwards

Two years ago, I inherited the grand piano my grandparents gave Mom as a gift for her 14th birthday.

Growing up, I used to crouch on the upper staircase in my grandparents’ split entry, safely hidden behind the sofa flanking the bannister in the living room, to listen to Mom play the piano that now sits in my great room long after she thought I’d fallen asleep. The hardwood stairs didn’t have a scrap of carpet on them, so often, after Mom finally played the last notes of Brahms’ “Intermezzo,” I’d crawl to bed with bruises on my knees. But the next night, banged-up knees and all, I’d sneak out of bed as soon as I heard Mom open the piano bench and shuffle through the sheet music.

I took lessons from one of Charlotte’s most renowned teachers for more than 10 years (Mom taught piano professionally, but she and Dad decided that a teacher-student relationship would not be healthy for our mother-daughter relationship). I earned “superiors” at competitions and overcame my nervousness to perform in front of roomfuls of people at my teacher’s annual recitals, but I never loved playing the way I loved listening. I hated practicing; I never truly felt the notes beneath my fingers but for the oven timer in the next room, dutifully ticking off the mandated minutes of practice time. I learned to play my pieces perfectly but never passionately.

Mom stopped teaching lessons many years ago. My grandparents sold her childhood home – the sad event that precipitated my early inheritance of a grand piano that gave my mother, and secretly me, so many hours of pleasure. Its sweet notes no longer dance within the walls of that house. Now, they dance in mine. These days, out of practice and nearly 15 years removed from all that formal training, I don’t come close to perfection. But without a competition or a recital or an oven timer looming over my head, for the first time in my life, I play with passion.

I think my sister would have played with passion had she been given the chance to play. Taylor loves music more than any other thing. Thankfully, Batten disease has not succeeded in stealing her ability to listen. Listening, to music and to life around her, is Taylor’s window to the world.

Batten disease robbed Taylor of the chance to take piano lessons and so much else. But music has done so much to enrich my life and the lives of people I love. Thanks to a dedicated group of piano teachers in Raleigh, the city in which I used to secretly listen to my mom play late at night all those years ago, it has helped advance the fight against the disease that will take my little sister away from me.

September is National Piano Month. If you play, thank a piano teacher. If music has touched your life or the life of a loved one in any way, embrace it!

The sound is in the piano…the music is in us. –Suzanne W. Guy