Small Tokens

Published: September 8, 2011 ~ 0

By Laura Edwards

John and I seem to always have different schedules from the neighbors who share our cul-de-sac, and our interactions with most of them are often limited to polite waves through the car window or quick chats at the bottom of our mountainous driveway while our dog explores a square foot of grass.

One of our neighbors, whose son grew up with my husband and was a groomsman in our wedding, left a gift bag on our mailbox sometime yesterday afternoon. The bag was addressed to Taylor; inside, wrapped in carnation-pink tissue paper, was a crisp white baseball cap with the golf brand ‘Taylormade’ in pink lettering.

When we walked across the street to thank her earlier tonight, we spoke with her for the first time in weeks.

People come in and out of everybody’s lives – it’s just the way things go sometimes. And the subject of Taylor doesn’t come up in most of those in-the-driveway-with-an-impatient-dog conversations with my neighbors. But every once in awhile, my family is reminded – by small tokens left on our mailbox or otherwise – that while good people may not ask about Taylor every day, they never forget.

Ironfriends

Published: September 2, 2011 ~ 0

By Laura Edwards

On Sunday, October 30, at 7 a.m., 2,500 athletes will tackle a 1.2-mile swim in the protected waters of Miami, Florida for the first leg of the Ironman 70.3 Miami. At least two of them will hail from my hometown of Charlotte: Amy and Parker Marsh. After their swim, Amy and Parker will ride their bikes 56 miles along quiet, scenic streets. Finally, they will run 13.1 miles through Miami proper.

They will do all 70.3 miles for Taylor’s Tale.

When Amy first told me about their plan months ago, I was floored. After all, I’m in awe of the athletically well-rounded folks who rock triathlon courses. I’m decent at a lot of sports and have legitimate talent for a few, but all of my sports involve the use of my own two feet on dry land. I’m a terrible swimmer (whether or not I make my 2,500-lap goal, I’m still bad!) and haven’t ridden a road bike since I borrowed a haggard one from the bed and breakfast where John and I landed during our visit to remote Ocracoke Island, North Carolina three summers ago – and that was to get to the watering holes with the best beer and fruitiest cocktails on the island’s small harbor.

Even more than my awe for the multi-sport physical challenge ahead of Amy and Parker, though, I’m eternally grateful for their decision to do it for Taylor. Though I know they look forward to the race and will enjoy it on a personal level, they’ve endured countless early-morning lake swims and 60-mile rides and nine-mile runs in the early-morning-but-still-steamy Charlotte air before work in order to get themselves ready, and that hasn’t always been easy or fun. They’ve done two-a-days three to four times a week. Their bodies hurt. But they’re dedicated to seeing this challenge through to the finish line in the city of Miami 57 days from now, and I’m both honored and humbled that they’ve chosen to chase their shared dream of finishing their first Ironman 70.3 race on behalf of children everywhere fighting Batten disease.

Of course, my good friends are also trying to raise a little bit of money for Taylor’s Tale along the way. I’ve already shown my support for Amy and Parker and hope you’ll consider doing the same. Simply visit their Miles to a Miracle page, scroll to the bottom (to the ‘Support My Cause’ section) and enter your donation amount in the space provided. In Amy’s words, anything you can give is appreciated, and no amount is too small to make a difference!

Thank you to Amy and Parker for their selfless determination and to everyone who honors their efforts with a gift to Taylor’s Tale!

Locks of Hope

Published: September 1, 2011 ~ 2

By Laura Edwards

My mom, Taylor, and I all have the same hair stylist; in fact, I ran into the girls as I pulled into the parking lot at the salon earlier tonight for a long-overdue cut.

I will never forget the afternoon in her salon in January 2008, just before my parents and sister boarded a plane for a city thousands of miles away so that Taylor could take part in a clinical trial. Taylor had beautiful, long, blonde hair back then, and my parents wanted to save some of it from the operating room floor for a wonderful program called Locks of Love. The stylist first braided my sister’s hair, then took a large pair of scissors and snipped it off near the nape of her neck, placed it into a Ziploc bag, and handed it to our mother. The image of Mom sitting there in the salon chair, her youngest child’s braid in her lap and silent tears rolling down her cheeks, is forever burned into my memory, just as is the moment a few days later when the study coordinator came to our family in the surgical waiting room in that faraway hospital, the rest of Taylor’s hair in yet another Ziploc bag in her outstretched hand.

As I gathered my things after my haircut tonight, my stylist’s assistant asked me about Taylor’s prognosis. I was the last customer of the evening, and I can imagine that my stylist and her assistant both looked forward to getting home to their families. But instead, we all stayed in that tiny salon for another 30 minutes.

I have a couple of stock answers ready whenever someone asks me about Taylor – not Taylor’s Tale, but Taylor. This is because I assume they want really good news – like, “Taylor is doing much better! We’re out of the woods!” Or, “The surgery/medicine worked! She’s all better now!” But this is Batten disease. And the only constant about Batten disease is that no child has ever survived it. They all travel their own road, but all of the roads lead to the same end. That’s pretty sad, though, and people have enough sad stuff in their own lives without taking ours on, too. So while the much hoped-for responses (see above) would be disingenuous, I still feel the need to come up with something positive to say. So I usually answer with something like, “She’s a fighter!” That is true – Taylor is the most courageous person I know, except for maybe my mom. Or often I’ll say, “We’ve made amazing progress for kids like her!” That’s true, too, but I usually say that when I really don’t want to talk about Taylor. Because then I’m just another person with a cause – but in my imagination, at least momentarily, the cause isn’t life and death for my family. It means a lot to me, but it’s not about me, so it’s not as scary.

Tonight, for whatever reason, I decided not to whip out one of my short-order responses. When my stylist’s assistant asked the question, something in her eyes said she wasn’t looking for the happy-go-lucky answer – something to make her feel better about the world. And 30 minutes later, my stylist declared that she had already cried a little and didn’t want to cry a lot, and she couldn’t do that in front of me, so why didn’t we all just head home?

Before we left, my stylist said that early on, she could tell I just wanted to fight, fight, fight. I was a woman on a mission. And if anyone asked me if I believed Taylor could be “the one” (to survive Batten disease), I boldly said, “Yes. I believe in miracles.” But as time went on, I took on a quieter form of determination. I’ve never stopped believing, but over time, I became a little less “rah rah” in how I went about it. That may have been when I replaced “Taylor” with “kids like her” whenever I talked about research – not because I stopped believing in a happy ending to our story, at least in the deepest depths of my soul, but because I finally understood our opponent. In the meantime, I grew a hard outer shell to protect me from Batten disease. The shell keeps me from crying – in fact, I’m almost unable to cry. The shell gives me the courage to stand in front of a crowd – or sit with two friends in a dimly lit salon after closing time – and talk about the monster that’s attacking my little sister without totally losing it.

Yes, I still believe in miracles. But my definition of true miracles has changed. I used to believe that I could have a direct impact on whether or not a miracle actually took place. As if I could wave my magic wand, and suddenly I could buy a cure for Batten disease at the local CVS Pharmacy, and Taylor would be able to see again, and I’d help her do her homework and go to her dance competitions and swim meets.

I know now that if such a miracle is possible, it will happen independently of anything I’ve done or could do. Because miracles defy logic. They require divine intervention.

I don’t know if a true miracle will save Taylor’s life. Only God knows that. But I know that another, more worldly kind of miracle is being constructed at this very moment – a miracle I can help create. In labs across the world, talented researchers are unlocking vast secrets of the human brain and its complexities and wonders and ways to fix it when it’s under attack. And I know that the worldly miracle is coming. I know that Taylor’s Tale can be an important part of it.

In the meantime, the best thing I know to do is what I said to my stylist and her assistant before we walked out together tonight: I can wake up each morning and commit to find one good, happy thing in each day. It may be a phone call that delivers news so good it takes my breath away. It may be a gorgeous sunset or a long run. It may be a great cup of coffee. And each night, before I drift off to sleep, I can silently repeat my prayers to God to give Taylor the life I believe she deserves.

Long after Taylor’s surgery, my mom revealed that she could never bear to part with all of Taylor’s hair. And seeing my sister’s thick golden locks, still as brilliant as the last day they framed her innocent, 9-year-old face, took me back to that morning so long ago in a hospital waiting room far from home. That morning, our hearts were filled with fear, but also hope.

We’re going to hold onto HOPE for a little bit longer.

Milestone!

Published: August 28, 2011 ~ 3

By Laura Edwards

I set a new personal record in the pool today – 100 laps! And I did it without stopping to rest even once. That may not seem like much to a superstar swimmer (well, pretty much the rest of the active world), but it’s a big deal for me, a self-proclaimed land animal when it comes to sports. My previous best was 98 laps. That night, I was going for 100, but the lifeguards rightfully kicked me out of the pool two laps shy of my goal when a bolt of lightning streaked across the sky.

With today’s total and 70 from earlier in the week, I’m now at 1,040 laps. I’m so excited about breaking 1,000! I still have 1,460 laps to go before I reach my goal of 2,500, but I’ll bask in the glow of the first 1,000 for a day or so before I start worrying about how I’m going to make time for the rest before Charlotte’s trees turn golden and red, then lose their leaves, signaling the end of October (and the end of my 132-day quest).

Hopefully my physical therapist and sports medicine doctor don’t follow my blog, because I also have a confession to make: I ran two miles yesterday – a couple of weeks prior to getting my virtual permission slip to run in return for a (mostly) healed Achilles injury. It felt great, and I’m still on my feet, which is a good sign! I guess I’ll just have to set another goal for dry land once my 2,500 laps are in the books.

Visit www.taylorstale.com/miles to donate to our Miles to a Miracle campaign. If you can’t make a gift, that’s okay, too; all I ask is that you spread the word about this blog and my mission to write the happy ending for children with Batten disease. Thank you for your support!

On another note, welcome to my new blog site! Whether you’ve followed my blog for several years or are new to our story, I hope you like Write the Happy Ending 2.0. Thanks so much for reading, and here’s to miracles for children like Taylor. I believe!

Grace

Published: August 15, 2011 ~ 2

By Laura Edwards

On October 4, 1999, I arrived home from school to find an envelope addressed to me in the mailbox. My grandmother’s familiar cursive hand graced the outside of the envelope and filled the card inside, spilling onto a separate piece of stationary. Also tucked in the envelope was a newspaper clipping from the Raleigh News & Observer. The photo depicted an NC State University vet student comforting a dog separated from its owners by Hurricane Floyd, a category two storm when it flooded eastern North Carolina that September.

Because the photo did not include a caption, Grandma Kathryn explained its significance in her note. In doing so, she shared one of her many stories with me. She was a storyteller in the purest sense of the word; she knew how to give her words life beyond the page on which they were written or the air in which they were spoken, and in doing so, she always imparted some piece of great wisdom.

“The way people have responded to this situation on the coast has restored my faith in humanity,” she wrote near the end of the story. “I was beginning to think no one cared about their neighbors, but that is simply not true. Most of us are basically good, just misguided. Tragedy sometimes brings out the best in people.”

Grandma Kathryn and me in June 2006, just three weeks before
my wedding and seven weeks before Taylor’s diagnosis.

My grandmother said her faith in humanity had faltered, but I never saw that – not in 1999, and certainly not now. She devoted her entire life to those she loved or those who needed her, and she never expected anything in return. She became a mother at sixteen, and her three children – and the grandchildren that followed later – were her life. She always dreamed of becoming a writer but never had the chance to go to college or even finish high school, enrolling in beauty school instead. Decades later, she helped me discover a love for writing and, for many years, helped me find my own words. She is present in the happiest memories from my childhood. I remember lazy summer days on Oak Island, days we took long walks on the beach and looked for shells or sat in a swing on the waterfront in Southport, eating hushpuppies with honey butter and filling stacks of spiral notebooks with poems and short stories; nights we hung a sheet over the bare windows of her house in Raleigh and ate Shake ‘N Bake chicken and Kraft macaroni and cheese while we plowed through rented movies stacked two feet high.

Life was never easy for Grandma Kathryn, but it was, for the most part, happy. And she did everything in her power to ensure that her children and children’s children had happiness.

I will never forget my freshman year of college. I began and ended my college career at UNC-Chapel Hill, but I spent the spring semester of my first year at NC State. I became so deeply depressed in the fall that I wasn’t sure I’d be able to make it till Christmas. I often wore sunglasses to class, even on the cloudiest of days, to hide my tears. Some nights were particularly bad, and on those nights, my grandparents climbed in the car and drove from Wake Forest, just north of Raleigh, the forty or so miles to my dorm to pick me up and take me back to their house, where I’d complete my homework assignments on the family room couch while my grandmother made my favorite foods for dinner. After dinner, she’d sometimes join me on the couch and rub my head till I fell asleep, as she did when I was a little girl and suffered from terrible migraines. The next day, if needed, she’d adjust her schedule at the beauty shop so that she could drive me back to Chapel Hill in time for school; I never missed a class. In December, when UNC posted final grades, I made the dean’s list. Meanwhile, NC State accepted my transfer application, so in January, I moved in with my grandparents in Wake Forest and began attending classes in Raleigh.

One weekend in February, I returned home to Charlotte to visit my family and John. On Sunday, just a few hours before I had to make the drive back to Raleigh for class the next day, I went for a run on the outdoor track at the YMCA. The sky was a clear, brilliant blue, and the air felt so cold that it hurt my lungs. As I sprinted the length of the last straightaway, my lungs burning, I suddenly realized that I wanted to go back to Chapel Hill for my sophomore year, mostly because I didn’t want to go through the rest of my life believing that I had failed at something.

I re-enrolled at UNC that fall, just as I had decided on that sunny, cold day in February. I had three amazing years there and never once regretted my decision to return. However, I also never forgot the four months I lived with my grandparents and attended NC State. Though forged by great pain, they also brought happiness.

More than seven years after I lived with my grandparents, my grandmother fell and broke her hip. She was admitted to a hospital near her home on Oct. 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until Oct. 31 – her 68th birthday. During that month, her world, and ours, came crashing down. Though she had to have surgery to repair the broken hip, the injury itself didn’t necessitate a protracted hospital stay. It was the frightening symptoms that emerged during her time there, eventually diagnosed as Lewy body dementia, that kept her there for so long.

Now, when we look back on the months leading up to the diagnosis, we recognize the signs. At the time, we attributed Grandma Kathryn’s occasional odd comments and vacant facial expressions to depression stemming from the loss of her own mother and Taylor’s Batten disease diagnosis. As I said, my grandmother’s children and grandchildren are everything to her – and the thought of Taylor dying young was literally killing my grandmother. To this day, a large part of me believes that her own disease intensified and perhaps even arrived years prematurely due to her heartbreak over Taylor’s illness.

Lewy body dementia, like Batten disease, is ugly. It strips people of their faculties, but also their personalities. Lewy body has spared very little of my grandmother just three years removed from the diagnosis. Every time I see her or talk to her, I struggle to avoid crying. My grandmother, who taught me to love books, will never read again. My grandmother, whose cards I eagerly awaited to receive in the mail, will never write again.

Because the grandmother I knew is no longer with us, I cherish pieces of her – like the letter she sent me in the fall of 1999 – more than I ever imagined I would, just as I never imagined the last days of her beautiful life would be spent this way. She taught me so much over the years. She taught me not only how to write, but also how to love; she taught me to figure out what I want in life and to never, ever give up in my efforts to obtain it. She taught me about the things that are important, and the things that are not.

Now, facing the prospect of losing my grandmother and my little sister, I can only hope that I inherited their ability to see the best in every situation, their great love for others and their indomitable strength in the face of adversity. And, if I should ever lose my way, I will need only to read this, the note tucked into that card I received in the mail so long ago:

Dear Laura,

I want to tell you again how much I like and admire who you are. You are realizing what is important. Not soccer, joyous though it is for a short time, but relationships, your values that keep you head and shoulders above the crowd. The people who love you, unconditionally, no questions asked. Friends you will remember years from now. Some little moment that seemed unimportant at the time, but the memory lingers on.

Enjoy each day. You can only live this part of your life one time.

You said that adversity makes you strong. That is true. Pain and sorrow make you strong also, but the thing that gives you the most strength, the staying power to stand alone, is love.

Now it is the love of family and a special friend or two. One day soon it will be someone who loves you for the person you are, who knows all your secrets, and loves you all the more for them.

You are preparing for that time now and he will be a lucky man because you have a strong character. You are kind, intelligent, determined. You don’t quit.

When I think of you, I think of the term “Grace under pressure.”

You are the person I always hoped you would be and I love you very much.

When you go to college, you will be pushed and pulled to do things that you know in your heart are wrong. That is when this inner strength and character you have so painfully acquired will be so important. That is “class.” Not money, not prestige, not social position.

Just simply, who you are.

Love,

Grandmama

A Timely Message

Published: July 5, 2011 ~ 0

By Laura Edwards

The road has been more difficult than usual lately. Somehow, I think I was meant to find the following quote, printed on card stock and slipped in among spiral notebooks and unread mail on the desk in my parents’ kitchen tonight:

“I believe life is constantly testing us for our level of commitment, and life’s greatest rewards are reserved for those who demonstrate a never ending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams from those who live in regret.” –Anthony Robbins

Spunk

Published: June 16, 2011 ~ 0

By Laura Edwards

I’m all about anniversaries. And on Tuesday, I celebrated one: the two-month anniversary of a sideline sprint that ended with me crawling off the soccer field, my left Achilles tendon partially torn like a piece of frayed rope. Sixty-one days later, my Achilles spent its “anniversary” feeling just about as worthless as it did the moment it tore.

These unfortunate circumstances are partly my fault, I know. There’s no use in denying it; I’m a bad patient. After all, my doctor did tell me to wear my walking boot at all times unless I’m fully engaged in my usual fetal position in bed for a too-short night’s sleep. But the boot’s hot. It’s a pain to take on and off. It’s not the best summer fashion statement; I keep thinking I should decorate it with miniature leis and little pink umbrellas and other fun things that make me think of cute sandals and tropical islands and activities best done bootless. And, it’s not water sports-friendly. I spent this past weekend at my aunt and uncle’s house on beautiful Smith Mountain Lake in Virginia. Getting from the house to their dock in a beautiful, quiet little cove with a full view of the mountain itself requires navigating 86 unevenly-sized wooden steps. My uncle, a surgeon, was horrified at my lack of compliance with doctor’s orders – first when I attempted to come down those steps barefooted and crutch-less, and then later, when I came down the steps a second time, still barefooted but this time on crutches, only to ditch the crutches as soon as I reached the bottom step.

One reason I’m a bad patient is that I am extremely prone to cabin fever. I cherish those fleeting moments in which I have nothing to do and can simply sit still and breathe, but when I’m forced to sit still, it drives me crazy.

The second reason I’m a bad patient is that I’m just plain stubborn. Sometimes, when instructions don’t suit me, and I’m the only one who stands to lose, I just don’t follow them.

I’m stubborn about Batten disease. Some people have asked me, and my mom, why we’re still fighting this damn monster. It’s winning the fight right now and has been all along, so why are we still throwing punches?

I’ll tell you why we’re still fighting. We haven’t been knocked out yet, that’s why. We may have bloody lips and swollen eyes and busted noses, but we’re still standing, and we’ve managed to get in a lot of good licks on Batten, too. There are still people out there who haven’t heard Taylor’s story. There are still people out there who, given the opportunity, would be inspired to fight beside us – for one battle or maybe the whole war. I learned that this spring; I spoke publicly on behalf of Taylor’s Tale on six different occasions, and every time, at least one perfect stranger came up to me afterward wiping away “I want to help” tears. And, most importantly, there’s still a lot of kids who need us to keep fighting. We won’t find the answer in time to save all of them – maybe not even my own sister. I know that. Believe me, I’ve known it for a long time.

But just as my family’s still standing, my sister’s still smiling. When Taylor was little, we called her “spunky,” which really meant she was stubborn as hell but so damn cute that “spunky” just fit better.

Keep throwing those punches, Batten. Eventually, the fight will end, and you’ll be lying on the ground, and we’ll be standing. We’ll be covered in blood, and we’ll struggle to keep our balance, but we’ll still be on our own two feet. Because we’re too spunky to take “no cure” for an answer.

In spunk we trust.

Batten Disease Awareness Weekend

Published: June 4, 2011 ~ 0

By Laura Edwards

How did you first hear about Batten disease?

Nearly five years ago, I was sitting at my desk on a Charlotte hospital campus when I heard that awful phrase for the first time. I was writing a press release when my mother called to tell me through tears that a geneticist had just told her and my dad that my 7-year-old little sister was going to die.

I wish I’d never heard of Batten disease. I wish I could wrap my brain around the idea that one single defective gene out of the estimated 20- to 30,000 we humans have can cause all of the terrible things that are a part of Batten disease. But a large part of me is glad that I can’t always wrap my brain around the truth that all of those terrible things are happening or will happen to my little sister, now 12. Because it’s during those moments of truth that I’m engulfed by feelings of helplessness and despair.

I’m proud of all that Taylor’s Tale has done to advance the search for a cure. Nearly $300,000 and many stories later, we’re much closer than we were on the day of that fateful phone call. More than that, however, I’m proud of my family for how they’ve faced this monster each day with nothing but hate for it and love for each other. And most of all, I’m proud of my sister for never losing her beautiful spirit – even in those moments when the twisted demon of a disease is at its strongest.

Today marks the beginning of Batten Disease Awareness Weekend, so I have a small favor to ask: over the next few days, please make a point to share Taylor’s Tale with everyone you know. Scientists are very close to finding an answer for infantile Batten disease, but that answer will never reach the children who so desperately need it unless more people know about it. Batten disease is anonymous in the eyes of much of the world, and that has to change. Then, and only then, will we witness a miracle worthy of the courage that lives in each and every one of these children.

The Raindrops Danced

Published: May 17, 2011 ~ 0

By Laura Edwards

Tonight, throughout most of the 30 minutes I spent chained to a recumbent bike at the gym, my eyes darted from the Kindle in my lap to the darkening sky through the windows – layers upon layers of deep blueberry blue and blackberry purple, like a frosted layer cake left out in the sun on a humid day. As I hobbled out the front door some time later, the orthopedic boot that has been my fashion statement for the past month holding my busted Achilles together like Scotch tape, the front desk attendant told me to stay dry.

As luck would have it, the first warm, fat drops of rain fell from that layer cake sky just as I walked out into the balmy night.

Normally, I would have sprinted the 50 feet to my car. I don’t like to get wet. My husband routinely teases me about my love for the outdoors and, conversely, my distaste for rain unless I’m safely out of it. Just two days ago, he watched with a smile from the door of the chapel where our friends were about to be married as I limped unevenly across the parking lot, my left foot in the boot and my right foot in a three-inch heel, a slippery Pashmina wrap slung over my shoulders and the world’s largest golf umbrella clasped in both hands.

As I pulled out of the gym parking lot, I received an unexpected visit from a decade-old memory of an afternoon at my grandparents’ house in Wake Forest. In the pictures that played on the projector screen in my mind, Grandma Kathryn chases an overalled-toddler version of Taylor around the front yard under a gray sky. Taylor manages to avoid our grandmother’s outstretched arms, only to be scooped up by John when she rounds the corner and runs right through his hiding place. He turns her upside down and tickles her, then sets her on her feet. And the game begins all over again.

A soft breeze rolls over the tops of the trees – a warning for rain. As the first drops cascade out of the sky and onto our waiting faces, I run for cover. Taylor runs to the porch and tugs at the handle of an umbrella three times her size. John takes the umbrella from her, opens it and wraps her tiny fingers around the shaft. Her cherub face breaks into a grin, and she takes off down the winding path to our grandmother’s garden, singing in the rain.

I smiled as I remembered this very real moment – a testament to my little sister’s ability to find beauty in every drop of rain. The image of Taylor skipping down that garden path reminded me of the words of Cindy Smith, a courageous mother who lost her son to the same disease that threatens to take my little sister away from me forever.

“Life is not waiting for the storm to pass. It’s learning to dance in the rain.”

As the spring rain poured from the sky, I rolled down my window. The raindrops danced on my outstretched arm as a smile danced across my face and love filled my heart.