Write the Happy Ending

New Blog Site

2011-09-01T20:11:00.002-04:00

Write the Happy Ending has moved! You can find it at www.writethehappyending.com. This will be my last post here, so please bookmark the new site. Thank you, as always, for reading!

2,500 Laps: Two Months In

2011-08-21T14:43:00.000-04:00

Just a quick update on my quest to swim 2,500 laps in 132 days: yesterday afternoon, I hit the 870-lap mark after a quick 70-lap swim. I gave myself 132 days to swim 2,500 laps in honor of Noah Coughlan's cross-country run, and after 63 days - meaning a little less than halfway through - I'm only slightly better than a third of the way to my goal. I was out of town a LOT in July and August, however, and I hope to make up a lot of ground while I'm home over the next couple of weeks. The only speed bump may be a minor surgery scheduled for early September. I'm making a second trip to the OR to finish fixing my nose, which I broke badly playing soccer last year, so swimming probably won't be an option for a week or so.

On another note, my physical therapist gave me some great news on Wednesday. He thinks I'll be able to run in about a month - something I haven't been able to do since I injured my Achilles (playing soccer, of course!) on April 14. I'm committed to this swimming thing, though - for Taylor as well as my long-term health. I've just got to stay focused. 1,630 laps to go...

As a friendly reminder, if you'd like to make a pledge toward my 2,500-lap quest for Taylor and others like her, simply visit the Miles to a Miracle website and click on the 'DONATE' button on the left. If you have any questions, please let me know. Thanks, as always, for your support!

Grace

2011-08-14T22:57:00.002-04:00

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 16, 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 40 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 final grades were posted, 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 was 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 October 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until October 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

2,500 Laps: One Month Later

2011-07-21T19:40:00.000-04:00

Since my last update re: my quest to swim 2,500 laps in 132 days, I've met Noah Coughlan (twice), graduated from the walking boot that put me in the pool in the first place and notched another 120 laps. And even though I now have my doctor's permission to do weight-bearing exercises, I'm going to finish what I started. I have till October 29 to swim the last 2,020 laps; considering all of the conflicts I have between now and then, including another surgery on my twice-broken nose that will sideline me for at least a week, it won't be easy. But Noah ran through thunderstorms and soaring temperatures; he ran from vicious dogs, through blisters and scrapes and a bout with food poisoning; he ran at all hours of the day and night to meet his mileage goals. So tonight, as he continues his long drive home to northern California, though a big part of me would rather curl up with a good book, I'll head to the pool. Because that's what Noah would do.

When you get a chance, please watch this video. It beautifully captures the spirit of the last two days of Noah's 132-day run. Keep an eye out for my little sister toward the end, standing in a group of kids with Noah on the beach that served as the finish line for one of the most inspiring and most physically demanding feats ever achieved by one person. Can't find Taylor? As usual, she's the one in pink. :) Watch the Video

The Work of His Angel, Complete

2011-07-12T23:21:00.001-04:00

This past Saturday afternoon, I stood on the beach in Jacksonville, FL, under a threatening sky of quilted purples and grays and deep blues, with the Atlantic Ocean at my back and an entire country before me. There, I watched as Noah Coughlan led a pack of runners through the parking lot and onto the sand for the last 50 yards of a 2,464.18-mile journey that began in Oceanside, CA 132 days earlier, on February 28 - fittingly, World Rare Disease Day. The other runners pulled up at the spot where the waves lapped against the shore, but Noah ran into the surf, shoes and all, overcome with emotion and exhaustion and enormous energy all at the same time.

I won't even pretend I have the talent to find words that could possibly capture the grandeur of the gift Noah gave families like mine. All along, he meant to tell our story to the rest of the world. In the process, he carried me, and undoubtedly others, out of the dark world of Batten disease and into the light. At times this year, I've wanted to quit. My sister isn't well. The little girl I fell in love with is still in there, but Batten disease casts a long shadow. With each month that goes by, her light burns a little less brightly. On July 24 - just 12 days from now - it will be five years since the day a geneticist told my parents to go home and love her; that she would die young. Those words, and the pages and pages of Google results for 'Batten disease' that corroborated them, seemed so hard to believe then. Five years later, the cold, cruel reality of Batten disease has hardened in me.

As I watched Noah wade into the ocean, however, something washed over me, a rhythmical, spiritual feeling unlike anything I'd ever experienced, and I knew at that moment that a miracle had unfolded before my very eyes.

I wouldn't necessarily consider myself superstitious, but I do believe that God works in mysterious ways. In the aftermath of Noah's finish, the clouds at our backs grew darker and darker, but the sky above the ocean remained astonishingly clear. It wasn't until much later that those clouds finally burst apart and rained down upon us, the work of His angel - for now - complete.

2,500 Laps: Two Weeks In

2011-07-06T23:01:00.000-04:00

Just a quick update re: my quest to swim 2,500 laps in 132 days in honor of Noah Coughlan's cross-country run for kids with Batten disease: over the first 17 days, I've only been able to make it to the pool five times, but the good news is that those five swims added up to 360 laps! Life makes it tough to commit to something every day, which makes Noah's achievement that much more powerful. He's one of my heroes, and I can't wait to meet him in person.

As a friendly reminder, if you'd like to support my quest to swim 2,500 laps with a gift to Taylor's Tale, visit www.taylorstale.com/miles and click on the 'Donate' button in the sidebar on the left. If you have any questions about this, please let me know! Thanks in advance for your support.

More to come soon...

A Timely Message

2011-07-04T21:16:00.000-04:00

The road has been more difficult than usual lately. Somehow, I think I was meant to find the following quote, printed on cardstock 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

2,500 Laps

2011-06-20T23:37:00.000-04:00

When I pulled my Speedo on tonight, I noticed for the first time that the black material is so worn in places, it's nearly transparent. The only lap-swimming suit I've owned since the summer of '89 (the one year I swam on the neighborhood swim team), its threadbare straps practically begged to be retired. And since my Achilles injury has dragged on for nearly 10 weeks with no end in sight, I took one last look at my raggedy Speedo, sighed and headed to REI, where I purchased a suit that's much too nice for a non-swimmer like me. Then, I headed to the YMCA, where I squeezed in 60 laps for Taylor before the lifeguards kicked me out (which is becoming a trend, ever since I discovered that if I go to the Y after 8:30, I don't have to fight for a lane).

Today, Noah Coughlan reached Florida - the last of eight states stretching across the lower third of the United States of America on his amazing solo run for children with Batten disease. He's passed the 2,000-mile mark and will be near 2,500 when he reaches the Atlantic Ocean in Jacksonville on July 9. I'm a pretty good runner when I'm not broken - I finished in the top 20 percent (men and women) of a strong field in the 10-mile race I ran the week before I blew out my Achilles on the soccer field. But I would have to average 7 miles a day for an entire year - without taking a single day off - to cover the ground Noah will cover in a tad over four months. While I've talked to Noah several times, I haven't talked to his joints...and for all I know, they might hate him right now. Mine sure hate me. But Noah's still running in honor of my little sister and all of the other kids fighting Batten disease. I am in awe of his dedication.

I originally planned to run with Noah over the final two days of his journey - but that won't happen now, not unless I get a new leg in the next two weeks. My profile on Miles to a Miracle, the Taylor's Tale campaign inspired by Taylor's own 5K runs, states that I "run, walk and hike for miracles." I haven't done any of those things since mid-April. So be it. The fire still burns, and though I have a bum leg, I also have a swim cap, goggles and that shiny, new suit. So over the next 132 days - the duration of Noah's journey - I'll aim to swim 2,500 laps for my little sister. If you're able, please consider making a pledge in support of our Miles to a Miracle campaign. Even a penny a lap - just $25 if I achieve my goal - can go a long way toward supporting the search for a cure. I'll post an updated lap total here each week. Thank you in advance for your support!

Send an email to laura@taylorstale.com if you're interested in making a pledge!

Spunk

2011-06-16T19:52:00.000-04:00

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. 61 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

2011-06-03T22:51:00.000-04:00

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 seven-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 20,000-30,000 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

2011-05-16T20:12:00.000-04:00

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 orthopaedic 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 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 words spoken by 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.

Run Toward the Light

2011-05-04T22:03:00.000-04:00

I have a confession to make: saving my sister will not be easy. This is not a new revelation on my part. In fact, no one in our family ever claimed that our mission to save children like Taylor would be a piece of cake. Some days (many, in fact), we search for the answers in a pitch black world, with seemingly no hope to light our way. But we must never stop searching. We must continue this journey - if not by sight, then by faith.

Sometimes, I let several weeks pass between blog posts. If I'm not writing, I'm searching. Searching for what? God only knows. Hope? Salvation? Happiness? Eventually, I find my words. Often, they drift toward running.

I cannot run at the moment. I tore my Achilles playing soccer three weeks ago - the culmination of a less severe injury that originally occurred two days before I ran a 10-mile road race in Taylor's honor. So I run in my mind - on cool, damp sand by the sea as the sun sinks behind a low cloud, or a field of wildflowers in a high mountain meadow - but never the unforgiving pavement.

Charlotte Benson, the mother of a child with Batten disease, is not a runner. But Charlotte understands the difference between a sprint and a test of endurance. She understands that our shared battle is a test of the latter. She knows that often in our long race to defeat this monster, we must run in the dark.

I am injured, and Charlotte is not a runner. We have never met. And yet, we are running together - through the deepest, blackest darkness that is Batten disease, buoyed by our faith and the incredible gift of each other and the sick children we love.

Thank you, Charlotte, for your beautiful words. On their wings, I'll run toward the light for another day.

Run to the Sun, by Charlotte Benson

A year ago, Lance Thompson, our good friend and avid runner, came to us with an idea to organize a 100-mile overnight relay run to raise money for the Foundation. Admittedly, I’m not a runner, and my first reaction was, “Who in the world is going to want to do that?!!” But as the idea evolved, and he shared his vision of a race whose course would meander under the starlit sky of the Texas countryside and culminate at a stunning destination at sunrise, I began to understand. Now, less than two weeks away, that vision will become a reality on May 14 when 30 teams of eight people each will compete by running a rugged Hill Country 96-mile course starting at Mount Bonnell and ending in the dawn light at Enchanted Rock. Members of each team will follow the route together in a van to support their runner and cheer him on as he steps onto the course alone to face his own unique challenge in the dark. Lance wanted the participants to experience first-hand the physical darkness and challenges that a child who is blinded by Batten Disease faces. It has been transformative to watch Lance’s ambitious dream become a reality and I am struck by how incredibly this race also mirrors our own life, and so perfectly mimics the mission of the Beyond Batten Disease Foundation. I love the way God inspires us only later to reveal His full intention.

As parents of a child with a terminal illness, there are so many unanswered questions. This not only is a race against time to find a treatment or a cure for our own daughter, but it’s a journey through the dark, facing the fear of running alone, and not knowing what obstacles and challenges lie ahead. The verse that continually comes to mind and is such a great source of comfort is 2 Corinthians 5:7, “For we walk by faith, not by sight.”

Our foundation was built by our family, our friends, and our community, all of whom have shared their talents, their gifts and their resolve to achieve the same goal. We have set out to accomplish something that has never been done before……..to eradicate Batten Disease and 600 other rare diseases through our carrier screening test. It’s a journey where friends and community follow us closely and offer support and encouragement. It’s a journey where everyone brings their talent and strength and sews them together to form an unbreakable bond: a resolve to commit, to endure, and to finish what we’ve set out to do.

This race is not a sprint. It is an endurance event that requires the commitment and support of a team. There is an African proverb that says, “If you want to go fast, go alone. If you want to go far, go with others.” God has provided for us with the incredible gift of our community, our “team,” which perseveres. These runners do not face the challenge of this course alone; our foundation does not face the challenge of Batten Disease alone. We are a team.

And best of all, we have charted a course. We are not simply running in the dark, aimlessly wandering from hopelessness, to fear, and despair; we are running to the sun, to the light, to the hope, to the dawn of a new day where Batten Disease no longer exists: our own Enchanted Rock. For light emerges from the darkness and morning is born from the womb of night.

Visit Charlotte's Blog

The Meanest Mother in the World

2011-04-22T23:04:00.000-04:00

Growing up, I thought I had the meanest mother in the world.

My friends' mothers did most of the work on their science fair projects, but I had to do almost all of the work on mine. One year, I tested different brands of store-bought popcorn for their popping prowess. On a gorgeous Saturday afternoon, my mother made me sit at the kitchen table counting hundreds of popped and unpopped kernels while my friends played outside.

In elementary and middle school, I hated wearing dresses and got nervous around boys, but my sixth grade year, my mother forced me to participate in Teen Cotillion. On Wednesday nights, instead of building forts in the woods or going to Charlotte Hornets games with my dad, I had to put on a skirt and go to a middle school gym to learn how to do the waltz and the shag and the electric slide and hold hands with boys.

For more than a decade, my mother dragged me to piano lessons once a week, and the other six days, she made me practice for at least 45 minutes, setting the timer on the oven so I couldn't cheat. While other kids got to play fun music from movie soundtracks and chart-topping albums, I had to play the classics. And while lots of kids got away with just playing in the annual recital, I had to play in all of the competitions, too. I got a 'superior,' the best score, every single competition in every single year - all but one. That time, I got an 'excellent,' the second best score, and on the way home, my mother told me I didn't play to my potential.

Some of my friends bought pizza in the school cafeteria five days a week, but my mother sent me to school with thermoses of chicken noodle soup and apple slices and peanut butter sandwiches with the crust still attached.

A lot of my friends' rooms looked like war zones, but my mother made me clean my room and took away privileges if I didn't. She used to follow me around with the vacuum cleaner and got mad when I wore my muddy soccer cleats into the kitchen.

Most of my high school friends had midnight (or later) curfews, but my mother forced me to be home by 10:30. During my sophomore year, on the night before I turned 16, I went to the senior follies production at school with my junior and senior friends, and one of them insisted that we celebrate my birthday at midnight. I walked in the door of my house at 12:25, almost two hours after curfew. My mother grounded me.

None of my friends' parents pressured them about their grades like my mother pressured me. The first semester of my freshman year of high school, I got my first-ever 'C,' in English. My teacher told my parents that I got the 'C' because I didn't apply myself, so my mother took away my Cliffs Notes, threatened to hire a tutor and insisted on reading my take-home papers before I turned them in. I never got another 'C' again; that spring, I took the state writing test and got the highest score in the school, and seven years later, I graduated from college with an English degree.

Many of my soccer teammates' moms came to every single game - even the weekend-long tournaments out of the state - and waited in the parking lot after practice so they could yell at the coaches about their daughter's playing time. My mother never came to practice, never yelled at my coaches and never even came to many games. She was too busy being president of the Junior League or serving on some other board to give kids with handicaps or from less fortunate families a chance to believe. And while my teammates' mothers helped them research college soccer programs and athletic scholarship opportunities, my mother told me to go to the best school, even if I had to walk on the team or, worse yet, never got a chance to play on the varsity.

When I became extremely homesick at the beginning of my freshman year of college, my mother wouldn't let me move home to go to the school my boyfriend attended. She told me that if I didn't like my school, I could go somewhere else, but I couldn't come home.

When I told my mother my boyfriend and I wanted to spend the summer after my graduation driving across the country, she told me no. Instead, she made me get a PR internship at a local ad agency while I figured out what I wanted to do with my life, since my original plan to be a starving artist didn't solve the issue of getting me off my parents' payroll. That internship led to the career I have today. And when I wanted to get married after I earned my undergrad degree but before my husband finished his, she convinced me to wait until he was halfway through grad school.

Finally, after years of waiting, my wedding day was the happiest of my life. That day, I stood in front of 75 of our closest family and friends and toasted my father and my mother for giving me everything a daughter ever could ask for.

Since that day, I've seen my mother torn apart by the disease that shattered our family the same day we learned of its existence for the first time - just one month after my wedding. I've watched her fight for my sister, Taylor, like her own life depended on it - and maybe it does. I've watched her demand the best of the people who have a chance to give kids with Batten disease a future, just like she used to demand the best out of me. I've seen her at her most desperate, and in those moments, I've tried (often in vain) to be the rock for her that she's always been for me - even though I used to be too naive to see it.

I love my sister, but I'm not only fighting for her. I'm fighting for my mother - the greatest mother in the world. Because that's what she always did for me.

Mother's Day isn't until two weeks from Sunday, but my mother deserves to be honored 365 days a year. Happy Mother's Day, Mom. I love you!

Digging Deep

2011-04-11T21:21:00.001-04:00

I managed this self-portrait before dawn
the morning of the race.

As promised, following are my results from the 2011 Tar Heel 10 Miler, run on the campus of UNC and the streets of Chapel Hill on a misty Saturday morning before the sun ever broke through the clouds.

Time: 1:25:27
Pace: 8:35/mile
Laurel Hill time: 7:35
Place: 734 out of 2,189 overall; 267 out of 1,252 females; 60 out of 200 females ages 25-29

I began the race on Stadium Dr. with a nasty head cold, an injured Achilles (pulled in a soccer game two days prior) and maybe an hour of sleep (worried I'd sleep through my 5 a.m. alarm, I never quite made it to dreamland).

Around mile marker 2, I felt a burning sensation in the ball of my left foot. It never went away, forcing me to change the way I run (more naturally a sprinter than a distance runner, I run entire road races on my toes). Hours later, I'd discover the source of the pain - an enormous blood blister.

Near mile marker 5, the pain in my Achilles relented, blissfully replaced by a runner's high.

A few miles later, I called my parents from the course just to check in. Their voices gave me the boost I'd need just moments later.

Soon after we said goodbye, I reached Laurel Hill - the most difficult part of the race, featuring a 200-foot vertical climb over the course of a mile. By then, my lack of sleep had caught up with me. But when I crossed the first timing mat, I pushed myself, getting as close to a sprint as my body permitted. Each time my ruined feet hit the pavement, I heard my little sister's laugh, and I dug deeper. I crossed the second timing mat at the top of Laurel Hill 7 minutes and 35 seconds after crossing the first - meaning I'd run the most challenging mile a minute faster than my average mile pace.

Soon afterward, I heard the music at the finish line as I rounded a bend. And when I reached the final straightaway, as in every race, I pulled out one more sprint for "T."

I ran the 2011 Tar Heel 10 Miler 12 minutes faster than in 2010, so tonight, true to my word, I'll make a $60 donation to our Miles to a Miracle campaign. But more importantly, I'll never stop running. In fact, I got back out on the track tonight, ready to tackle the next race for Taylor. Laurel Hill has nothing on the mountain we have yet to climb. But I believe.

Please consider making a gift of your own to help Taylor's Tale cross the finish line of the ultimate race: the race to save the lives of children like my little sister. Give Now

Still Standing

2011-04-06T22:08:00.000-04:00

It's been one of those weeks for me. They come along every once in awhile. My tears are threatening an uprising.

I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. One early evening I started crying without warning as I stood at my kitchen counter making macaroni and cheese, listening to music and watching the sun tuck into the clouds behind the trees in my backyard. I sank down to the floor and stayed there with my back against the dishwasher and my bare feet on the cold tile floor as hot tears soaked my shirt and my shoulders shook. I didn't know what made me cry at that moment, and I didn't know how to stop. So I just cried until I didn't have any tears left.

After a 5K fundraiser one cool, rainy Saturday morning the following spring, I held the hand of a boy with juvenile Batten for 30 minutes. I knew Seth wouldn't have seen my tears, but I still held them in until after I'd walked away. And as soon as I did, that was it for me. I took my mom by the arm, and we found my car and drove home. I climbed the stairs to my bonus room, closed the blinds and slept on the couch for five solid hours. And I NEVER sleep during the day.

Somewhere along the way, my life before Batten disease (B.B.D.) dropped out of sight in the rear-view mirror. I cried less and less. Mostly I stayed angry. I'm still angry, which is good in a way because it makes me want to fight like hell. Sadness doesn't get me anywhere. Lately I'm feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide.

Mostly, it's working. I cry very little, but when I do - it's epic.

I don't know where I am or how I got here. If you've lived my story, you understand the source of my doubts.

Originally this line said that I don't know how I'm still standing, but I deleted it. Because I DO know.

I'm standing because of my family. Tragedy generally does one of two things to relationships: tear them apart or super-glue them together. Tragedy sucks, but it's still been my super-glue. I love being in the same room as the people I love, and I'd walk through fire for them.

I'm standing because of the amazing human beings I've met since being thrust into the world of Batten disease. My hero at the moment is Noah Coughlan, who's running across the nation for children like Taylor - almost 2,500 miles in just over four months. I'm truly honored that Noah's offered to share the pavement with me when he reaches Florida in July.

I'm standing because of my sister - my hero for the ages. She has the most evil, unfathomable disease on the face of the earth; it belongs in hell. She can't see, and she can't always say what she's thinking. But today she gave an awesome presentation on Moby Dick. Tonight she helped me push our cart through the grocery store - while singing a Bee Gees song. And for the first time all day, I really laughed.

Most of all, I'm standing because of faith. This past Christmas, a dear friend gave me a necklace with these words:

"FAITH is the strength by which a shattered world shall emerge into the light." - Helen Keller

With the passing of each day, Taylor's survival falls somewhere farther away from logic. But as long as I'm surrounded by angels, I'll believe.

Laurel Hill

2011-03-21T22:27:00.000-04:00

Two weeks from Saturday, I'll run my favorite race, the Tar Heel 10 Miler, on the streets of Chapel Hill, N.C. and the gorgeous campus of the University of North Carolina.

I'll pass mile marker 1 on the L-shaped road I used to take to UNC basketball games at the "Dean Dome" and soccer practice before they turned our old field into a parking lot.

Around mile marker 5, I'll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater's grass-carpeted floor.

Near the very end of the race, I'll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It's the most difficult part of the race - so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.

Laurel Hill isn't easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I'll cross the finish line.

This will be the third race I've run for Taylor since Thanksgiving, but this time, I'll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by more than 20 minutes. Granted, south Charlotte doesn't have a Laurel Hill. But I'm almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.

To honor my little sister's valiant fight against Batten disease, I'm pledging $5 for every minute under my 2010 time. I'm also asking friends to give anything they can in support of my run. I'll post my race result here on Sunday, April 10.

To donate, visit www.taylorstale.com/miles and click on the 'Donate' button in the sidebar.

I'm incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we'll never stop fighting - or running.

miracle

2011-03-12T21:43:00.000-05:00

mir*a*cle - noun. 1: an extraordinary event manifesting divine intervention in human affairs / 2: an extremely outstanding or unusual event, thing, or accomplishment

On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I'd never met walked up to me, squeezed my arm, looked right into my eyes and asked the question that forever looms in our anxious hearts: "Is she going to be okay?"

She is my sister, Taylor, who at that moment sat less than 10 feet behind me at our family's table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman's searching eyes, I offered only the following: "We still believe in miracles."

I dodged the woman's question, I know - but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor's survival more clearly defies all logic.

When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.

If my sister should beat this disease - that will be a miracle, and when it happens, I will fall to my knees, look up at the sky and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.

I'm still waiting for that miracle. But I've witnessed other miracles along the way.

Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every 'normal' experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, 'Will she be able to handle it?' and 'Will this be her last one?'

As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor's hand and lead her onto the dance floor if no one else would.

But my fears were unnecessary.

True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form - an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.

The Last Birthday Girl

2011-02-27T19:17:00.001-05:00

The Last Birthday Girl in 1982

On Tuesday, I'll celebrate my last-ever birthday.

Okay, so not really. But I'll be 29, and since I don't care to turn 30, I've decided that at the very least, March 1, 2011 will be the last time I officially recognize my new age.

Despite my disdain for the number '30,' chances are good that I'll celebrate many future birthdays. Over the years, I've dodged plenty of bullets. I got off to a rocky start, suffering a severe brain injury at birth. Soon after, I became the first of two of my parents' three children to have brain surgery. Then, when I was five, I took a nasty fall from the top of a high dive and landed on my back on the concrete pool deck. 11 years later, I got in the first of three major car accidents. I'm particularly lucky to have walked away from the second. And in 2009, I had a lymph node removed during a cancer scare.

All of those things are safely behind me now. I still have scars on my head and my stomach from the intracranial shunt I sported as an infant, but a lime sherbet popsicle and a spell in the shade took care of the diving board incident. The cars involved in the accidents really took it on the chin, but every single time, I walked away shaken, and nothing more. Oh, and the offending lymph node? It was benign.

These days, my biggest health issue is the fact that I'm an orthopaedic train wreck - something I brought on myself and conveniently ignore whenever I lace up my Asics and head out for a run on Charlotte's finest asphalt. When I look in the mirror and see signs of my ice cream obsession and a head of hair that's not quite as blonde as it used to be, I suddenly remember that I'm not 17 anymore. But in that same mirror, I also see a girl who got a single good copy of the CLN1 gene. A girl who also got a bad copy, yes - but that copy's nowhere to be found in the mirror. You see, in a fight between a good copy and a bad copy of CLN1, the good copy always wins. It's only when you're unlucky enough to get two bad copies that you have infantile Batten disease. And if that happens, chances are you won't even be able to see your reflection in the mirror - or anything else. Those bad copies will have stolen your sight.

I've had my fun with this whole 'last-ever birthday' thing. Now, what I really want to do is thank God in advance for each and every last future birthday He decides to give me. Life is a gift, and I don't take a single day for granted. I can't. But I sure do have a hell of a chance at seeing tomorrow. My sister can't say that. Because she got two bad copies. So if Taylor lives to celebrate her 30th birthday, it'll be more of a miracle than anything in my life ever was. And if that day comes, I'll give her one hell of a 30th birthday party.

Make the Future

2011-02-20T10:57:00.000-05:00

"People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can't find them, make them." --George Bernard Shaw

'Incurable' is unacceptable.

Root Beer and Rameses

2011-02-15T23:53:00.000-05:00

Yesterday marked the 12th Valentine's Day my husband and I have shared. We're renovating our kitchen and hate going out on Valentine's, so he brought home a takeout feast from one of my favorite Italian restaurants and gave me a nice card. I gave him a card and...root beer. Four glass bottles of Stewart's root beer, actually.

12 years ago, we were high school juniors and best friends. Often on the days that I didn't have soccer practice right after school, we'd watch movies, play basketball on the elementary school's blacktop court or walk up to the grocery store, buy a four-pack of Stewart's root beer and drain all four on the sidewalk outside. And we had a blast; it was the best fun $3.99 could buy. I was dating someone else at the time. Nevertheless, through all those empty glass bottles, I glimpsed the future and knew that I would marry John.

All it takes to make a happy memory is two people and time.

Something else special happened that year: my little sister was born. And before she could crawl, she taught me that lesson all over again. One of the first times I held her, she wrapped her tiny hand around my pinky finger and didn't let go, even after she drifted to sleep. When she first started talking, she couldn't say my name, instead calling me 'Rar-rar.' Later, as a toddler, she often marched around the house chanting this phrase at the top of her lungs. Halfway through my senior year, T celebrated her second Christmas. I'd gotten accepted to Carolina a month earlier over the Thanksgiving holiday, and waiting for me under the tree that Christmas morning was a stuffed Rameses that played the Carolina fight song when you squeezed his hoof/paw/whatever you call a fuzzy ram's foot. Well, Taylor adopted Fuzzy Rameses as her frequent dance partner, and suddenly 'Rar-Rar' replaced ' Rah rah Carolina' in the song's lyrics.

I left for college eight months later. A few weeks into my freshman year, I got an email from my mom - or so I thought. When I opened it, I discovered that it was actually from T.

'Dear Rar Rar,' it said. 'I wanted to send you a message too! Here goes! (insert two lines' worth of randomly assorted letters of the alphabet here).' I printed the email and stuck it to the corkboard on the wall in my dorm room. I moved every year that I was in school, and that corkboard got tossed into cardboard boxes and car trunks many a time. But when I packed the corkboard a few days before graduation, there was the email, a little worse for the wear but still capable of making me smile. Nearly seven years have passed since my graduation day, and I still have that email.

These days, I can't hold T quite the way I used to, because she weighs almost as much as I do. Fuzzy Rameses lives on the bed in my guest room - the room I decorated with my sister in mind but that she has never slept in. Rameses' batteries are long dead, but he's got a home under my roof for as long as he wants. And T hasn't called me Rar Rar regularly in a long time. When she talks - which isn't as often lately - she calls me Laura. But one thing hasn't changed.

A few weeks ago, I watched T on a Saturday night so my parents could go to a party. After dinner, we watched one of her girly girl movies. Her favorite chair isn't big enough for both of us, so I sat on the floor in front of it and leaned back against her pretzeled legs. 10 minutes in, she found my pinky.

Opposites Attract

2011-02-05T21:56:00.000-05:00

It's Saturday night, and my parents are out celebrating a friend's birthday, so Taylor and I are watching Ella Enchanted at their house. Right about the time the pizza I'd baked disappeared and I started the movie, my husband and brother fled to my house three miles down the road, allegedly to put up drywall in our kitchen (we're renovating) but more likely to avoid having to watch Ella Enchanted.

When I was 12, I wouldn't have watched a movie like Ella Enchanted even if you tied me down in the chair (I would have figured out a way to escape or, if my attempts failed, squeezed my eyes shut and stuck my fingers in my ears). When I was 12, I wore cutoff denim shorts and Charlotte Hornets t-shirts. My most prized possessions were my Legend of Zelda Nintendo game (my brother wasn't allowed to touch it) and the black and orange Nike cleats that matched my middle school soccer jersey. 17 years later, I'm still mostly that same girl. I like pedicures and expensive haircuts, but I'm still happiest in old jeans or Adidas pants and long-sleeved t-shirts or stretched-out Carolina sweatshirts. I still play video games and, when I'm not injured - which is rare lately - soccer. But my sister is a girly girl to the core. She likes sparkly jewelry and cute skirts and movies about princesses.

In spite of our differences, I love hanging out with my little sister. Even when she was still a toddler, I imagined going shopping or getting our nails done together or helping her plan her wedding.

I was only a month removed from my own wedding nearly five years ago when the Batten disease diagnosis tore my dreams into a million tiny little pieces. And now, though I still cling to my belief that we can find an answer to this monster in time for Taylor, I can't escape the disease, even when we're happiest together. Even tonight, as T listened to her movie and smiled, she dutifully swallowed each of the nine pills I put in her delicate little hand.

I hate this disease. I hate everything it represents. I hate it for all that it has stolen from us and for all that it will steal in the days to come. I hate it for threatening to steal my little sister from me. And yet somehow, through all that hate, I still find happiness in the most unusual places, like shared princess movie nights.

Over at my house, the guys have probably wrapped up in the kitchen, put the tools away and retreated to the great room to play Xbox and drink beer. I may be a video game and soccer-playing, old sweatshirt-wearing kind of girl watching a princess movie on a Saturday night with a 12-year-old dressed in pink pajamas and fuzzy pink socks, but I still think I got the better deal.

Move Mountains

2011-01-22T23:30:00.000-05:00

My mom frequently shares nuggets of wisdom such as the one below with me via email. I love getting these messages from her, particularly when I'm having a rough day. They serve as a reminder of what I'm fighting for and reassurance that I'm not fighting alone.

"I believe life is constantly testing us for our level of commitment, and life's greatest rewards are reserved for those who demonstrate a neverending 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 and those who live in regret." -- Anthony Robbins

I won't ever give up.

New Taylor's Tale Video!

2011-01-20T23:05:00.000-05:00

Check out our new video! :)

What's in the Box?

2011-01-11T22:30:00.000-05:00

My husband told me something profound tonight as I sat cross-legged on the floor of our home office, shuffling through pictures of a trip during which, three years ago this Saturday, January 15, we walked into a hospital thousands of miles from home and took a leap of faith - a leap that sadly never resulted in the miracle for which we hoped with all our hearts. On a day to day basis, he said I am weathering Taylor's illness much better than in past years - that I am stronger, even though in some ways I am sadder. But Taylor has a degenerative disease, so the day to day is much more painful than ever before. That made me wonder, if my husband is right - if he knows me as well as I think he does - what changed in me to make it so.

Being that we are just a few short weeks removed from Christmas, I came up with a holiday-themed analogy to explain the change.

When Taylor was first diagnosed with Batten disease, I built myself up every single day only to get completely torn down before the day was over. I was so focused on finding the one thing that would truly make it all better - for someone to tell me Taylor would live without lying to me - that I was miserable all of the time. It was as if each day was Christmas morning, and I tore the paper off the biggest gift box under the tree expecting it to be exactly what I asked for, only to realize it wasn't that at all and be totally crushed as a result. It didn't matter if the gift was nice. It didn't make Batten disease disappear from our lives, so to me at least, it wasn't nice at all.

I've been living with the knowledge that my sister has a fatal disease for more than 1,600 days. That's a lot of Christmases and a lot of heartbreak, since not a single one of those gift boxes under the tree has ever had the miracle wrapped up inside. As time went on, I realized that I couldn't always have exactly what I asked for. But while I never stopped wishing for the miracle, I learned to appreciate other things in those boxes - seeing a smile on my sister's face, taking a long walk on a summer evening after the lightning bugs come out to play, hiking to the top of a canyon in Utah painted with a brush that could only have come from Heaven, being in the same room as the people I love. Those gifts enable my very survival. I know I might never receive the one gift I seek above all others, but that tragic, haunting realization can't steal the other gifts away from me. They had my name on them, I opened them, and they're mine.

We dismantled our 'real' fake Christmas tree over a week ago. But first thing tomorrow morning, I'll unwrap another gift. I don't know what I'll find inside, but that's the beauty of life - the unknown and the dreams that guide us. And who knows? Someday, I might just unwrap that miracle.

Faith

2011-01-06T22:23:00.000-05:00

"Faith is the strength by which a shattered world shall emerge into the light."

-Helen Keller

Love to the friend who gave me these words and to all those who walk beside me in my search for the light.

Imagine

2011-01-03T22:38:00.001-05:00

Thanks to Jennifer VanHoutan, the mother of two children with late infantile Batten disease, for letting me share the following:

***

Imagine your child tripping over his feet and eventually not being able to walk. Imagine 15 months of your child regressing and no answers as to why?

Imagine seeing over 100 seizures in 2-1/2 years.

Imagine your child swimming one summer but the next summer he is expressionless when you take him into the pool.

Imagine your child being able to play tee-ball and now can no longer hold a ball or bat.

Imagine your child not being able to hug you or say "I love you" anymore.

Imagine your child having no known friends he/she talk about.

Imagine your child never being invited to a classmates birthday party.

Imagine your child singing the "ABCs" and can no longer speak a word.

Imagine your children taking 58 medicines a day.

Imagine your 6 year old having the mind of a 4 month old.

Imagine having only 25% chance per child to pass on a defected gene and it happening to 2 out of 3 of your children.

Imagine something so rare the chances of winning the lottery are better.

Imagine all day your 6 year old needing 100% support and supervision.

Imagine a disease that takes away a childhood and then the child.

Imagine no cure....yet.

As you know, we don't have to imagine this - this is our reality. As it is for many other families we've met during the last 2 years. Our goal today, and for the rest of our lives, is to bring awareness and raise funds to support research for a treatment for a cure. Noah hit every milestone on time until he was 3 and he was a bright kid. Laine still talks, but her speech is regressing and her gait is widening. Emily has a sharp reality as to what is happening to her siblings....can you imagine?

***

It's impossible to put a value on the life of even a single child. So while Batten disease is rare, believe this: no child or family should have to face its unimaginable horrors. We can ignore Batten disease, but at what price? Is Noah's life not worth fighting for? Or Laine's? Or Taylor's?

Batten disease changed my life, and I know what it does to children and families in the worst possible way. It's dragged me to hell and back.

Yes, Batten disease is rare. But look at it this way: there are hundreds of children currently living in the United States alone who will die of some form of Batten disease unless a cure is found first. And that's not to mention all of the children living across the rest of the world today or, for that matter, the children who haven't even been born yet, many of whose parents are walking around without the slightest idea that they carry the gene responsible for Batten disease. Like my parents, they won't find out until they watch their son or daughter experience unexplained deterioration and go on to receive a wrong diagnosis or two or three before finally arriving at the catastrophic conclusion that their child is destined to die young, all because of a mutation on a single gene from out of the thousands upon thousands of genes that make up a human being.

Batten disease is simply too tragic too ignore. In July 2006, my family asked friends for one thing: to believe in miracles. In the beginning, we asked people to believe for Taylor's sake. Today, I'm asking you to believe for Taylor, but also for Noah, and Laine, and all of the others whose lives are on a cursed ticking clock.

From the Rafters

2010-12-21T21:16:00.001-05:00

Mom, Taylor and I made our annual trip uptown to see the Nutcracker at Charlotte's Blumenthal Performing Arts Center on Sunday night.

For me, Christmas wouldn't be whole without these two precious hours spent with my two favorite girls. We were up in the rafters this time around, but none of us cared. Taylor, of course, goes solely for the music. I love the ballet, but I go mostly because almost nothing makes me happier than seeing my mom and my little sister smile. I'm not quite sure how many times I've seen the Nutcracker, but that will never get old.

I cry very little these days; sometimes, I wonder if my tear ducts haven't all but dried out thanks to the events of the past four-plus years. But at the zenith of my favorite part of the ballet, Pas De Deux (the dance of the sugar plum fairy and her prince near the end of Act II), I glanced over at my mom, and I lost it.

Only God knows how many more times the three of us will be able to go to the Nutcracker together. Our next chance is a year away, and I can't take anything that far out for granted. I can't take next month, next week or tomorrow for granted. To be fair, none of us can. But Batten disease changes the game. The curse that is Batten disease makes each day my family is still whole even more of a blessing. The present is fleeting. But those two wonderful hours in the Blumenthal rafters with my girls will live on in my heart forever.

Finding My Wings

2010-12-15T23:28:00.000-05:00

I snapped this photo with my phone near the very end of the 13.1-mile Thunder Road Half Marathon course this past Saturday morning. If it doesn't strike you as special, take a closer look. The man in the blue shirt is running with a cane. He's blind.

My friend Amy pointed this fellow out to me early on in the race, when the throng of runners still tightly packed the streets of uptown Charlotte. Seconds later, I lost him in the crowd.

3,231 runners completed the 2010 Thunder Road Half Marathon, but for some reason, I crossed paths with the blind runner not once, but twice on our shared journey to the finish line. I can't say the same about any other runner with any degree of certainty. I'm not the most superstitious person in the world. But I believe in divine intervention.

I believe I could have gone the full 26.2 Saturday based on energy alone. My heart and my lungs still felt good at mile 13. But by then, my feet and ankles had already been screaming for mercy for seven whole miles. Many times, my head told me to pull out. Injuries on top of injuries - and the accompanying pain - can do that. I forged on because I was running for Taylor. When I saw the blind man under the bridge, I knew she was right there with me. Shortly afterward, the finish line came into view. Taylor helped me find my wings, and I sprinted the rest of the way.

If I Have to Crawl

2010-12-04T15:28:00.000-05:00

The cold, damp weather chased me indoors this morning for my Thunder Road Half Marathon training. I'm a fan of running in the cold, but not the rain. So I bundled up and headed to the YMCA, where I hit the 1/12 mile-long track with my heart set on completing 120 laps, or 10 miles.

The first mile felt good - nice and easy.

The second mile was better; my muscles were warm, I was into the heart of my playlist, and I coasted.

Near the end of the third mile, I thought about how if I was Taylor running one of her 5Ks, I'd be close to the finish line. When I'm running a race, I like to sprint the rest of the way as soon as the finish line comes into my field of vision. But Taylor never got a glimpse of the finish lines she crossed. She had to get her last burst of energy from somewhere else - somewhere deeper, somewhere purer.

Two laps into the fourth mile, an invisible demon struck a match inside my shoes, and the balls of my feet caught on fire. My achilles whined. Everything else felt good, though. So I pushed on.

Partially to push my very real physical pain out of my mind, I thought about how if I was Taylor, I would be running in darkness. I was too scared to close my eyes on one of the turns, so I closed them for an instant on a straightaway. I felt the presence of other runners and walkers on the tiny track and knew that I would never be able to make it to the far end. I opened my eyes.

Seven laps later, I glanced down and discovered that the entire toe area of the shoe on my right foot was soaked with blood. I never stop in the middle of a mile, though. I had three laps left. Just a quarter of a mile.

As I rounded the third corner of lap 60, I sprinted the length of the last straightaway and right into a chair by the water fountains. I was only halfway through my 10-mile run. But I knew I was done.

I've been injury-prone since I was 15 years old. I've never gotten through a single soccer season without getting hurt. In my mid-20s, I made the inexplicable decision to turn myself into a distance runner. I never really thought about why until this very moment, right here. But I know instantly, without question, that I became a distance runner because of my sister.

In the months after Taylor's diagnosis, I ran to get away from Batten disease. No matter what, running always felt better than crying. I still cried. But I ran more. And after I discovered that I just might have a say in how the story turned out, I ran harder than ever.

Blood-soaked shoes and all, I'll never stop running. Next Saturday, December 11, I'll cross the finish line of my second half marathon, even if I have to crawl. I could never let myself quit. That's not Taylor's style, and it's not my style either. So, to bloody feet and weak ankles and Batten disease, I say bring it on. You may knock me down. But you'll never knock me out.

I'm not only running for myself - I'm running to save Taylor's life. Please consider supporting my efforts through Miles to a Miracle, a new campaign inspired by Taylor's great courage on the race course and in life. Email me to learn how.

Things I'm Thankful for, Part III

2010-11-25T11:48:00.000-05:00

I'm feeling bad that I didn't post an entry for this series last night. John and I went to see a movie and afterward stayed up late making a pumpkin spice roll for Thanksgiving dessert, and it totally slipped my mind. So, technically I need to post twice today to make up for yesterday. However, I'm going to let myself off the hook just this once, because I'm anxious to get over to my parents' house and still have a ham to cook. I also ran the Charlotte SouthPark Turkey Trot 8K with my brother, Stephen, this morning in Taylor's honor and am badly in need of a shower.

So with that said, I think that today, I am most thankful for my family and that God gave me this day to enjoy with them. I am thankful that I have the most wonderful husband in the world who is also my best friend, the best parents - who have made so many sacrifices for me and have given me so much - the best brother and sister a girl could ask for and grandparents with whom I've made more happy memories than I could ever begin to count. I am thankful for all of the other relatives and friends I will not see today. I am thankful that I am, for the most part, healthy and have the strength and the will to fight for my sister's life. I am thankful for the moments when my heart is filled with hope. In those moments, a small part of me believes that I will spend many more Thanksgivings with Taylor. And in those moments, I gather enough strength to go on for another day.

Happy Thanksgiving, and much love to all of my family and friends and everyone who continues to stick with us for the fight against Batten disease!

Things I'm Thankful for, Part II

2010-11-23T20:03:00.000-05:00

Tonight, I'm thankful for video games. Yes - you read that correctly. An homage to Nintendo doesn't feel very poetic or grand, but in my world, video games mean that I've accomplished necessary tasks to the extent that I don't feel (very) guilty about flipping my own switch to the 'off' position and doing something mindless for awhile. In my world, mindless is healthy, because often, my brain and my heart are so twisted over certain cards we were dealt that stress becomes physically exhausting - even damaging. I try really, really hard to hide the signs, but people close to me know how to spot them.

Sometimes in college, after I'd had a rough day, I'd flop on the vinyl couch in the apartment I shared with three other girls and play Donkey Kong 64 until my roommates had come home from class and gone out and come back home again. Last winter, when I stayed home from work sick with a sinus infection, I played Super Mario Galaxy for nine hours and seven minutes. I know this because the game documents such stretches of lost time. And tonight, to celebrate the beginning of a long holiday weekend, I'm rescuing John from our garage (where he has been painting siding since he got home from the office) so I can beat him at Wii Sports Resort before he annihilates me at Golden Eye.

Taylor plays video games sometimes. She's pretty good at bowling on Wii Sports if you get her lined up just right and help her with her wrist motion the first couple of frames. And she does a mean hula hoop on Wii Fit. Unlike her big sister, though, T prefers to unwind with her music. Put her in a room with a stack of CDs and her CD player or her Ipod, and she'll entertain herself for hours on end. She used to sing all of the words to the songs. These days, she doesn't sing the words very often. Instead, she picks out certain notes and hangs on them forever, like a miniature opera singer. She's (almost) always in key. Sometimes we have to remind T not to do this - at least not so loudly - when we're in a public place. But part of me hates to take it away from her. Pictures mean nothing to her now. Music is everything.

Here's to all of the mindless activities ever invented for the escapement and enjoyment of the mind and the soul. And here's to the next few hours in front of my TV. Wish me luck! :)

Things I'm Thankful for, Part I

2010-11-22T20:59:00.000-05:00

In honor of the upcoming Thanksgiving holiday, I've decided to pen a new entry on each of the next four days, with each post dedicated to something for which I'm thankful.

Tonight, I'm thankful for my ability to see. I'm blessed to possess two eyes that, with the assistance of contact lenses or thick glasses, receive reflected light and usher it through first the cornea, then the pupil, then the lens and then the retina, where finally it is converted into electrical impulses and sent to my brain, where an image is produced. This is an amazing process that took nearly three full lines to describe but that in reality happens instantaneously and without requiring any thought or effort on my part. Since I was nine years old, I've had a hard time climbing out of bed in the morning without first putting my glasses on, but once I do that, the world is crystal-clear.

I'm thankful for all of the visual memories that will forever remain preserved in my heart. This very instant, I can see the way the sunlight trickled through the leaves of a certain tree whose canopy watches over a sidewalk that runs alongside the Undergraduate Library on the campus of the University of North Carolina. I used to purposely take that sidewalk to South Campus just so I could walk through that dappled light. Now, I can see the fountain at SouthPark Mall in my hometown, as well as the thousands of pennies slumbering under the water's surface, and my dad's face as he tells me, his only child, a story, and the scoop of mint chocolate chip ice cream perched atop a sugar cone from the Baskin Robbins whose departure from the mall many years ago almost left me in tears. (I immortalized that particular memory in the novel I never finished once the doctors discovered the terrible truth about my sister's genes.) Now, I can see my great-grandmother's laugh - because she laughed with her eyes - as she watches a funny movie with me in her basement, an ice-cold can of "Co-cola" in her hand and an unfinished game of Chinese checkers on the coffee table. Now, I can see my husband's face as he asks me to marry him on the sidewalk in front of my grandparents' house in Wake Forest, NC, where we spent our first wonderful long weekend together as best friends just three days before he asked me out (not the first time he asked, but the first time I said "yes") during the first semester of our senior year of high school. Now, I can see my little sister's beautiful, working eyes focus on me as she runs to give me a hug.

I graduated from college in the spring of 2004, and that tree beside the library is no longer a regular part of my life. The SouthPark Baskin Robbins is so long-gone that most people living in Charlotte these days probably don't even know that it ever existed. My great-grandmother passed away a few years ago, and I never got to tell her goodbye. My husband and I are still as in love as we were on our wedding day, but my grandmother is very sick, and the house where John asked me to marry him was sold two months ago. And my sister has not made eye contact with me in a very long time, because Batten disease came along and decided that she doesn't deserve to see. So I cherish photos I took of her more than a few years ago - the ones in which she is looking at the camera. And more than ever, I cherish each and every moment spent with my blind sister. I cherish the miracle that is her presence in my life, and I hate the disease that wags its finger at me every day, tells me to stop fighting back, tells me I should be satisfied with the memories I already have and stop dreaming of making more.

Miles to a Miracle!!!

2010-11-13T13:37:00.000-05:00

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit - some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor's school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates - never mind that she's blind. Taylor has always refused to watch the figurative race - life itself - from the sidelines - and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy - an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.

On the day of the practice 5K shortly before their first shot at the real thing - the Jingle Jog in uptown Charlotte - Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others - including her classmates and coaches - fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T's feat that day and immortalized it in an article she wrote for Endurance Magazine.

A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister's face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing - even Batten disease - is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word 'Believe,' written in big chalk letters stretched across the pavement. And even though T didn't win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don't know exactly how long it will take us to get there, the finish line - in this case, the cure for Batten disease - does exist. And the smarter and faster we run, the more kids like Taylor we'll save.

Enter Miles to a Miracle, Taylor's Tale's exciting new campaign to fight the disease that threatens to steal Taylor's ability to run and so much else. T's story is about running, but you can do whatever activity you love for kids with Batten disease - whether it's running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own - from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 - the distance in miles around the globe - in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don't think you'll do any fundraising but still want to help us use Taylor's inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend's effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:

B-e-l-i-e-v-e.

Go to Miles to a Miracle!

Two Little Letters

2010-11-03T23:06:00.000-04:00

"People who attempt the difficult often attain the impossible."

-Mimi B. Hull, Ph.D.

I strive to live by these words everyday. I try to remind myself that while life's not perfect, there's always something better down the road, even if we're forced to clear a lot of hurdles before we get there. I pray for the strength and the will to fight those two little letters - 'im' - clutching the 'possible' and holding it back. We WILL win our battle against those letters someday soon, and all that will be left is the miracle. Come hell or high water, I believe.

Love to my mom, who shared this little dose of inspiration with me on one of my down days. Love to my sister who, no matter how many hurdles stand in her way, will always be our miracle.

New Video from BDSRA

2010-10-23T11:02:00.000-04:00

Please take a few minutes to watch this new video from the Batten Disease Support and Research Association (BDSRA), filmed at the organization's annual conference in Chicago in August 2010. It's a wonderful collection of perspectives from families and other individuals deeply affected by Batten disease. I'm featured on the video starting around the 4:30 minute mark. Thank you so much to our friends at BDSRA for creating this great tool in the fight against Batten disease and for allowing me to tell my story. Remember, you can help us fight this tragic disease by spreading the word and also by making a donation at http://www.taylorstale.com/get-involved. Thank you for your support!

The Batten Journey from On Scene Digital Printing on Vimeo.

What Next?

2010-10-13T23:13:00.000-04:00

In 1984, Reynolds Price - acclaimed writer, Rhodes Scholar, Milton expert, Duke University professor of English and my third cousin - learned he had cancer: a 10-inch-long, malignant tumor wrapped around his spine that he came to call 'the eel.'

Imagine getting that diagnosis today. 26 years ago, the eel was a death sentence. And yet 26 years later, Reynolds is still writing books and teaching his usual three courses at Duke. Seven years ago, when I was 21, I drove 10 minutes from my Chapel Hill apartment to Reynolds' house in the woods. We spent the afternoon talking about spirituality, Scotch, ginger molasses cookies (inspired by the Foster's Market molasses cookies I'd brought to share) and even a little writing. That day still conjures up the clearest of pictures and deep-down feelings whenever it crosses my mind.

I'm attending a great class with my mom at our church on Wednesday evenings. It focuses on spirituality in Reynolds' works. Tonight, we discussed A Whole New Life: An Illness and a Healing. This extraordinary book is the story of Reynolds' agonizing illness and astounding survival. It was published in 1994, and the first time I read it as a college student, I had no inkling of the sadistic disease lurking in my little sister's cells. I think that I will read it again. On page 185 of the paperback edition, Reynolds makes a profound statement. At the time of my first reading, my life was free from the kind of pain and suffering that I know all too well these days. In fact, when our teacher at church, the poet/novelist Tony Abbott, brought the passage to our attention in tonight's class, I read it with virgin eyes, as though I had never encountered it before:

"If belief in an ultimately benign creator who notices his creatures is available to you, you may want to try at first to focus your will on the absolute first ground-level question to ask him, her or faceless it. Again, that's not "Why me?" but "What next?"

In the early days following Taylor's diagnosis, I often plainly asked God all possible variations of that question:

"Why her?"
"Why me?"
"Why us?"

I was on the verge of losing my faith entirely in the wake of Batten's entrance into our lives when I suddenly realized that I was asking the wrong question. Whether or not there was a why, I certainly wasn't doing anyone any good, least of all Taylor, by questioning the sober reality of her defective CLN1 gene. It was on that day that I decided the only way to fight back was to start figuring out how to play the cards in my hand. Otherwise, I might as well have thrown all my chips on the table and left the game.

Here is another passage from that same page that I simply love:

"My own luck here was long prepared, from early childhood; but as with all sorts of invisible luck, there have been forced treks these past ten years when I all but quit and begged to die. Even then though I'd try to recall a passage of daunting eloquence in the thirtieth chapter of the Book of Deuteronomy where the baffling God of Jews and Christians says

'I call Heaven and Earth to witness against you today that I have set life and death in front of you, blessing and curse. Therefore choose life so that you and your seed may last to love the Lord your God....'"

Though she hasn't read Reynolds' book, Taylor gets it. She's always gotten it. T greets each new day and bids it goodnight choosing life, no matter how tough things are between sunrise and sunset. A life with Batten disease surely isn't one we would have chosen for her, nor is it one she would have chosen for herself had she been given a choice of cards. But they're her cards, and ours because we love her. And because I love her, I choose life for her, too. And here's a question for Batten disease: you gave us a good fight today. We fought right back. We're still playing the game. So what next?

The Girl Who Escaped in the Middle of the Night

2010-10-05T22:25:00.007-04:00

My piano teacher of many years, Dzidra Reimanis, called me today. I sent her a note yesterday to check in on her and also share the news that I now have a grand piano and plan on playing regularly again. This afternoon, not 36 hours after I put the envelope in my mailbox, my cell phone rang. I was shocked to learn that Dzidra is 83 years old (but still teaching full-time).

I started taking lessons from Dzidra before my feet reached the floor.

Dzidra was always ageless in my eyes. The day my mother (a piano teacher herself) took me to Dzidra's house for my first-ever piano lesson, I was four years old and still learning to read - so I guess you could say I learned my ABCs, treble clef and bass clef all at the same time. Over the 14-odd years that I went to that house, growing and changing constantly and in the later years still wearing soccer shorts and shinguards from practice and driving my own car, she was always the same Dzidra. Dzidra left Latvia, a tiny country on the Baltic Sea in northern Europe, in the middle of the night as a young girl. I discovered her origins one day when I asked her what the letters 'RIGA' on her car license plate meant. Dzidra explained that Riga is the capital of Latvia. I was always fascinated with Dzidra's story after that day. I was proud of the fact that I was one of the only students who always spelled her name correctly on competition entry forms. And as much as I hated practicing the piano at home, I was in awe of Dzidra's love for the art of playing it and teaching it. And it is an art. When you walk in Dzidra's back door, you enter an open room with a couch, coffee table, shelf and two Steinway grands standing back to back - one for students, and one for Dzidra.

I have been back in my hometown since the day I graduated from UNC. I live 10 minutes away from Dzidra and work two minutes away from her. And yet I haven't been to see her at all in the past six years. After talking to her for a few fleeting minutes this afternoon, I wondered why. That's why I'm going to see her first thing in the morning on my way to the office.

Think about the people who've touched you in some way. Do you get to see them everyday? How often do you talk to them? Maybe you live under the same roof and drink coffee at the same table every morning or go to sleep in the same bed every night. If you're like me, you can easily rattle off the names of people who have had a profound impact on your life, and yet for half of them, you can't remember the last time you saw each other or even talked on the phone. If you're anything like me in this regard, I hope you'll make this one promise to yourself and the special people in your life, either past or present: call them. Send them a letter or a card. Show up on their doorstep. Schedule time to catch up. And though it's awfully convenient, Facebook doesn't count. I take the easy way out sometimes, too. But it just isn't the same.

I haven't tried hard enough with Dzidra or anyone else for that matter - other teachers; my grandparents; parents; friends; cousins I suddenly stopped treating like cousins when the marriage broke up; my sister, whose beautiful life slips away more and more with each passing year. I care so much about all of them, but then I get busy and tell myself that tomorrow's another day. It took a series of tragic events in my life over the past four years - each and every one of which deeply affects someone I love - to understand this, and still I forget. But then I come across an old photo, or the phone rings, and I remember.

Angels Swoop Down

2010-10-01T22:07:00.000-04:00

Just when I begin to wonder whether I have enough strength to continue, angels swoop down out of the clouds and save me.

Thank you for renewing my faith in miracles. You know who you are.

That's all.

Exploring Fairyland on Wheels

2010-09-29T22:00:00.000-04:00

On Monday, after three nights at a wonderfully remote lodge in the Shenandoah Valley of Virginia, John and I realized we weren't ready to go home and so headed two hours northeast - away from our house in Charlotte - to check out some of the caverns in the area.

We enjoyed the first set, Endless Caverns; my only regret leaving was that the third (lowest) level of the cave was not open to the public. I'm that cat whose curiosity will get it killed one day, and hearing the tour guide talk about the closed-off portion of the cave was rough.

The second set, Luray Caverns, required a 20-minute drive up the highway. A mile before we reached the parking lot entrance, we'd tagged Luray as endlessly more commercialized than Endless. Seedy tourist traps dotted the road, and the caverns themselves accounted for just one of the attractions accessed from the parking lot. We briefly considered nixing Luray for the Skyline Drive in nearby Shenandoah National Park, but in the end, we sucked it up, paid our $46 and joined one of the tour groups in line to receive audio tour headsets like the ones they hand out at Alcatraz.

As soon as we took our first few steps into the underground wonderland, I took in the brick walkways, handrails, audio tour signs and yards upon yards of wires leading to harsh floodlamps in the eons-old rock. As I silently cursed the ultra-modernization of the caverns themselves and imagined myself instead exploring a wild, undeveloped cave, I noticed that a young woman in a wheelchair and her parents had joined our group. Before I had time to wonder how she would be able to navigate the steep stairs we had just descended, two teenaged guides came up behind her and pushed a hidden button that activated a sophisticated lift system. The guides negotiated with the wheelchair until its owner was first safely on the lift and then, just moments later, on the smooth, gently sloped brick walkway that snaked deeper into the cave. For the duration of the 75-minute tour, the woman and her parents brought up the rear but never kept the rest of us waiting. By the time we climbed back up those stairs toward daylight, I was glad John and I had chosen to stay and thankful, too, that the woman in the wheelchair had been given the chance to see the caverns, just like us.

Back when Taylor first became visually impaired, I quickly grew very aware of physically handicapped people around me as well as the opportunities and assistance (or lack thereof) afforded to them in public places. I never really thought about the mechanics of finding the right button in the elevator or distinguishing the ladies' room from the men's until my sister could no longer read the signs. Now, I'm hypersensitive of those mechanics as well as the feelings of people like T, and I marvel at the lack of sensitivity some others show toward them. Blindness is T's most significant handicap today, but I know in my heart that unless we find a cure quickly, she will eventually join many of her fellow Batten disease children in spending most of her days in a wheelchair. And while I initially wrung my hands over the considerable liberties the private owners took with their personal gold mine at Luray Caverns, I know that if my sister could see that underground fairyland, I wouldn't want a steep staircase to stand in her way.

When the Clouds Disappear

2010-09-22T00:00:00.000-04:00

We take so much for granted in life. Why is it that it often takes losing something (or the prospect of losing it) to realize what we have? I took childhood for granted, and then, one day, I looked in the mirror and discovered that I was all grown up. I treated summers with my (now) husband that way during the four years that we attended different colleges, and every year, right around the time that July changed over to August, it occurred to me that we were about to be apart for another nine months, and I tried to cram an entire relationship into two weeks. Luckily for me, he eventually married me anyway. I treated college that way; I graduated. I took my best friend from college for granted, and now I never see her, even though a mere 150 miles of highway separates us. I know now that while true friendships last forever, time with friends doesn't always survive. I took my grandmother for granted - she was much younger than my friends' grandmothers, and I loved her more than anything, and I thought I'd have her forever. Now, she has a terrible brain disease, and whenever I see her, I want to hold her and never let go and burst into tears at the same time. And I ALWAYS took my little sister for granted, right up until July 24, 2006, when the geneticist told my parents she has a fatal monster called Batten disease. Even now, I struggle to find a balance between spending time with her and trying to save her, much of which I do alone on my laptop while she sits in my parents' house just three miles down the road.

I'm often guilty of taking life itself for granted, no matter how many times I'm reminded of its fragility (by watching people I love suffer or passing by crumpled cars and ambulances and fire trucks on the side of the road). I get into a rhythm. I get up in the morning and, if it's a weekday, float from the kitchen (where the caffeine is), to the shower, to the closet, to rush-hour traffic to, finally, my office. Every night, I sink into bed far too close to the time that I'm scheduled to rise and do it all over again, closing a chapter on another day sans great adventure, with only my dreams to connect me to the whole wide, wonderful world just out of reach. Sometimes, deep down inside, I want to get in my car and drive west or on a plane and fly halfway around the world, just because I can.

I talk about dancing in the rain; but I've gotten perhaps too skilled at knowing when it's raining, something that may have come from sharpening my survival instinct over these past four years of my life laced with sadness. What I don't remind myself often enough is to look UP at that fleeting blue sky whenever the clouds dissapear.

Nostalgia

2010-09-15T23:59:00.000-04:00

It's been a nostalgic week around here.

Friday night, John and I flew through the aisles at Michael's 10 minutes before they closed and made it up to checkout with armfuls of art supplies just as they were locking the front door. We recently dragged out our high school art portfolios and got inspired (to make more art, not take the time to move the enormous portfolios from the office floor back to the closet where they belong). This fall, whenever our interest in the football game on TV is just lukewarm, we'll watch it from the back of our bonus room, where we have a rickety table that wouldn't exactly strike you as a place for art but will become one just the same.

Two days after our adventure at Michael's, the Panthers were down two touchdowns when I heard the piano movers arrive (I wish I could have seen their faces the moment they discovered my mountainous driveway, double-checked the address on the mailbox, realized that yes, that was the house and regret that they weren't charging me a whole lot more money). The grand piano my mom got for her 14th birthday - the one that has resided at my grandmother's house ever since - is now sitting in my great room. It is a resilient instrument, having survived a fire and a couple of moves. It is a beautiful piece of art and deserves to be played by someone who is not 10 years out of practice, which is why I tried to teach myself to sight-read again tonight and unexpectedly played a duet with my dog, Daisy, who isn't used to the piano and, as I just learned, likes to sit behind the bench and bark on the high notes.

After Daisy and I finished our duet tonight, I returned to my laptop and bought tickets to our high school reunion. I don't look all that much different than I did 10 years ago, but somehow, when I wasn't paying attention, I got 10 years older.

I can explain the sudden urge to relearn the piano after all these years, but I can't explain why John and I dug through all of the junk in our storage closet to get to a bunch of drawings/paintings we did in high school, nor can I explain what possessed us to spend all that money on art supplies (money well spent, but why now?). I also can't explain why I sat cross-legged in the floor of our office after dinner tonight, rifling through photos from my Charlotte Soccer Club days, or why I'm listening to Deep Blue Something right now, which hasn't been cool since I was 14 (if it ever was). Maybe I'm running away from the present. After all, it's been raining in my world this week, and for all the optimism I preach in this space, for all that talk about dancing in the rain, a lot of times I just want to crawl into my shell and try in vain to stay dry. My life wasn't perfect before I knew my sister has Batten disease, but it sure was a hell of a lot easier. I only wish I'd known how blessed I was at the time. Don't we all say that at some point in our lives?

Mom, Taylor and I went to the Blumenthal Sunday night to see Mary Poppins. For all the injustices that have been done to T, she's still better at dancing in the rain than her big sister. She couldn't see the coolest parts of the show (when Bert walked up one wall, across the ceiling and down the other wall, and when Mary Poppins floated out over the crowd and glided into one of the balconies), but she still smiled and laughed and had a great time and clapped along with the crowd when the cast sang 'Supercalifragilisticexpialadocious.' T loves theater/ballet/etc. and always has. Even when she was really little, The Nutcracker was one of the highlights of the year for her.

Here is an old picture of T, our brother Stephen and me at one of those Christmas productions when T was a toddler. I realize the picture quality's bad, but does she look happy or what? Back then, I took those moments for granted. Now, I treasure them, partly because I don't have any idea how many more we'll share. I'm already nostalgic for our night at Mary Poppins. I'm nostalgic for the dinner we shared at Jason's Deli two weeks ago. I'm nostalgic for future moments with T, and I hope to God there will be a lot of them.

Rain from a Blue Sky

2010-09-07T23:26:00.000-04:00

I have to begin this post by saying 'thank you' to my Uncle David and Aunt Holly, who just hosted us at their house on glittering Smith Mountain Lake, Va. for a quick Labor Day trip. The escape didn't come a moment too soon for any of us, and under an unmarred blue sky by day and velvet canvas spattered with stars by night, I, for one, enjoyed two of the happiest days I've had in a long, long time.

I started this blog with the intent to share stories about my sister, Taylor, Batten disease and the nonprofit we founded to fight it. Even now, several years later, I continue to be amazed at the sorts of experiences that move me to log in to the blog site and write. In the interest of full disclosure, I will say that those experiences have, at times, suffered a drought as the disease has marched on in my sister. She is quieter, more reserved these days; completely blind instead of mostly blind; dances and talks less. I tell myself that part of this story is her age - in my experience, one of the hardest for a girl. But I know that I would be lying to myself if I didn't attribute much of the sense of loss I feel these days to the disease.

I would also be lying if my blogs were all doom and gloom, my words painting our lives as all bad.

My current favorite quote belongs to Cindy Smith, mother of Brandon, who lost his life to Batten disease last fall:

"Life is not waiting for the storm to pass. It's learning to dance in the rain."

I never dreamed that 16 words could mean so much. Cindy's great wisdom lights the way when my path becomes dark; it helps me smile when all I want to do is cry. What better way to live our lives on this earth - whether we are stuck in a hurricane or a gentle spring rain? When I forget how to dance, I imagine myself running barefoot through sideways rain, my eyes squeezed shut and a big grin plastered across my face.

Again in the interest of honesty here, I won't try to convince myself that Taylor enjoyed our time at the lake in the same way that any of the rest of us did - from my parents and David and Holly on down to my little cousins and my husband and brother and myself. When we took the boat out late Sunday afternoon, she couldn't see the green mountain rising out of the sparkling clear water to touch the perfect sky. When John caught a huge carp, she likely heard its big body flopping against the dock but will never know what it looked like. When my cousins, ages 8 and 3, set off by themselves in the kayak to paddle around the cove, T couldn't join them.

T did, however, enjoy curling up with her Lion King soundtrack and an oatmeal cookie on the dock. When she snuggled up close to Mom in the boat and let the wind blow through her hair, she smiled. When John took Taylor and me tubing, she screamed roller coaster screams and implored him to go faster. Though David and Holly's dock is near the back of the cove, Dad told us T's yelps of joy reached them all the way from out in the channel. And, best of all, when Stephen and I sandwiched T between us on the supercharged Sea-Doo and I took them both for a wild ride, she never once asked me to slow down. Her fingers gripped my life vest a little bit tighter with each bump and jolt even as she threw her head back and laughed the kind of laugh that may very well add years to my life every time one reaches my ears. Near the end of the ride, I followed a boat back to our cove, criss-crossing its wake in an effort to feel those little fingers grip me even more tightly. And then, we were suspended in mid-air, and in a single instant frozen in time, my sister yelled, "Woo hoo!" That was when I knew for sure that in that moment at least, under that perfect blue sky, we were dancing in the rain.

Miles for T

2010-08-28T19:02:00.001-04:00

Late this past spring, I was running in my neighborhood when an idea popped into my head. The idea didn't have any shape or sense of order to speak of - when I climbed up my mountainous driveway at the end of my run, all I knew was that I wanted to use running as a way to fight Batten disease. Running is one of my purest forms of therapy, and it's also central to what many people have said is the most inspiring of many inspiring stories about Taylor. Without the advantage of sight but with the blessings of her own heart and a big-hearted friend, my sister completed two 5Ks when she was enrolled in the Girls on the Run program at her school.

Three months later, with the help of some very good friends of my own, my hodgepodge idea is becoming a reality. About a month from now, Taylor's Tale will unveil an exciting new campaign that will allow us to touch every part of the globe that has Internet access. And no matter how you prefer to stay active - by running, swimming, cycling, hiking, walking - anything that allows you to to log miles - you'll be able to do what you love in honor of kids all over the world who are fighting Batten disease. Along the way, you'll have the opportunity to share your own stories through words, pictures and videos - and connect with others logging miles, from the tree-lined paths of Charlotte, N.C., to Sioux Falls, S.D., to the foggy streets of London and even to faraway places like Australia and New Zealand (these are just some of the locales of friends who have already made a pledge to join our team!).

I'm so excited about this campaign that I'm having to work really, really hard to keep most of the details under wraps. With that said, it's probably best if I wrap up this particular post for now, but please stay tuned, as the launch will happen in the very near future. Thanks for all that you do to help us believe in miracles!

Cheating Death

2010-08-21T18:35:00.002-04:00

I've cheated death more than once.

I suffered an injury at birth and got the gift of an intracranial shunt. Doctors told my dazed first-time parents - both younger at the time than I am today - that I'd be severely handicapped if I pulled through. I was in the hospital for a long time. Then, I got a staph infection. The shunt had to come out. And then - miraculously and still without any logical explanation nearly 30 years later, I got better. I no longer needed the shunt. I was healed. Today, all that remains is a small lump on the back of my skull, a tiny white scar on my belly and, occasionally, a headache so severe that I'm almost driven to put an end to my misery.

Less than three years after I kissed my shunt goodbye, I cheated death again. I was in the basement of my grandparents' house, where my grandfather kept a pinball machine and two classic arcade games that towered over me at the time. I don't remember any of what happened, but as the story goes, I dragged a chair over to one of the arcade games, presumably to play, and knocked over a can of gasoline that my grandfather had brought into his house for some unfathomable reason. The fumes from the gasoline ran across the floor and straight to the furnace, where they ignited. My uncle was cooking steaks on the grill outside when he realized the house was on fire, ran inside, scooped me up and ran back out. The entire lower level of the house had to be rebuilt, but I came out of the incident unscathed, despite the fact that I had been mere feet away from the furnace when it burst into flames. The other notable survivor of the fire? My mother's wedding dress, hermetically sealed inside a cardboard box in - you guessed it - the basement. The same dress I wore on my own wedding day four years ago.

Fast-forward another two years. Mom and her best friend took me to a pool with a high dive on a hot summer day. I was maybe five and had never been on a high dive before. I made the trek from our lounge chairs alone and climbed the huge ladder. When I reached the top rung, I called out to Mom and her friend on the opposite end of the pool. I hadn't asked for permission to try out the high dive but figured that at that point, it was too late for anyone to stop me. I swayed back and forth as I raised my voice louder and louder to get Mom's attention. The wet railings slipped through my tiny clenched fingers. As I fell backward into a tall span of nothingness, time stood still, and I actually saw my mom's visor fly off her head as she came toward me in a full sprint. Then, without warning, I hit the concrete back-first with a thwack! I could have broken my back, or my neck, or cracked my skull into a million little pieces. Instead, I just had the wind knocked out of me. After a few minutes, the lifeguard walked me over to a shaded table near the concession stand and brought me a lime sherbet popsicle shaped like a frog and with gumballs for eyes. By the time I'd licked the popsicle stick clean, I'd made a full recovery.

When I was 20, I drove from Chapel Hill to Clemson, S.C. for a weekend-long soccer tournament. We played five or six games - I can't remember for sure - in a 36-hour span. By Sunday night, I was drained. I wasn't sure I'd be able to make it all the way back to Chapel Hill, so I stopped at John's apartment at UNC-Charlotte, walked inside and promptly went to sleep. The next day, Monday, my first class of the day was a creative writing class at 3:30. I slept in and left John's apartment around noon, leaving plenty of time to get back for the class. It was sunny and warm for October. At 1:47 p.m., on a dangerous stretch of highway less than 60 miles from Chapel Hill, I veered off the road to the left and barrelled into a speed limit sign in the middle of an enormous grassy median going around 65 miles per hour. The highway patrolman estimated I was asleep for about a quarter of a mile. If I hadn't hit that speed limit sign, I wouldn't have been jarred awake, and I would have likely continued veering off to the left and into oncoming traffic on another highway. I'm not a betting person, but I'm willing to bet my Honda Civic wouldn't have fared too well, and I'd have fared even worse.

I'm feeling pretty lucky at the moment, and I haven't even mentioned a few other exciting car accidents, or last year's brief cancer scare, or my bad copy of the gene that causes infantile Batten disease - paired with my good copy, the difference between being a carrier and a victim, like my sister. My sister, Taylor, whose birth and infancy were all smooth sailing, who didn't accidentally set her grandparents' house on fire, who never plummeted from the top of a high dive or fell asleep at the wheel but who, unlike me, got two bad copies of the Batten disease gene. I've been granted my fair share of new leases on life, and every morning when I wake up, whether or not I'm looking forward to the particulars of my day, I'm just thankful for the day. And for as long as God thinks I should be here, I'll keep fighting for Taylor - to help her cheat death, just this one time.

Birthday Wish

2010-08-17T22:47:00.000-04:00

When I was 15, I came home from school on a dismal January afternoon and found my mom sitting cross-legged in the floor of her closet. As I stood in the doorway, my backpack still slung over one shoulder, she told me she was pregnant, due in August.

A high school sophomore just a few months shy of her 16th birthday, I couldn't fathom the idea that my mom was pregnant. So, my supremely adolescent response to the whole matter was to grab my Sony Discman (still cool in 1998), lace up my sneakers and run out into the sleet and freezing rain. More than an hour later, I returned home with frozen eyelashes and wet clothes and walked right past my mom. I didn't bring up her news once that night - and eight months later, when my little sister was born, I found various reasons not to make it to the hospital. The afternoon Taylor came home, though, I raced my now-husband up the stairs to peer over the side of her crib (he won the race and maintains that he has known her longer). First place or not, I was instantly hooked.

That day feels like it happened in another lifetime. This Thursday, the baby I fell in love with the moment I saw her will celebrate her 12th birthday. Over the past 12 years, we've watched countless movies together, ridden bicycles in the driveway, done silly dances in our socks on the fireplace hearth, raced down the corridors of an underground mall in Toronto in T's stroller, gotten our nails done, cheered for the TarHeels, bought special treats for each other's dogs, eaten lunch with the Disney princesses and collected their autographs, rocked to the Cheetah Girls, Miley Cyrus and the Jonas Brothers at the local arena, built towering sandcastles in the sand, let the waves crash over our ankles and feet and, best of all, given each other lots of hugs. I thank God every day for the sister I never imagined I'd have or even knew that I wanted. I pray to God every day that the memories won't have to end.

She doesn't know it, but the best gift T could possibly get for her 12th birthday is a cure. Batten disease won't be cured by this Thursday - I'm a realist - but real progress can be made. As a friend of Taylor's Tale, a friend of mine, a friend of T or a friend of our family, please help us save my sister's life in honor of her special day. Any amount will go a long way in the world of Batten disease. To make a secure online donation, simply click on the link below to be taken to the donation page on our website. Thank you for helping us write the happy ending for children like my beloved little sister.

Grant My Birthday Wish for Taylor

Along for the Ride

2010-08-05T23:05:00.001-04:00

Nearly four days have passed since I returned home to Charlotte, and yet I am still trying to process all that I saw, heard and felt at the annual BDSRA conference in Chicago. As I said a few posts ago, I knew going in that the conference would be mentally and emotionally challenging for me. I officially attended as the president of Taylor's Tale, and my mission in that sense was threefold: learn as much as possible about research, talk to as many researchers as possible and deliver a check for a research project. Research, research, research. Focusing on the research helped me achieve the goals I set for my time, and our organization's time, in Chicago.

Words to describe my weekend: whirlwind. Exhilarating. Sleep-deprived. Inspiring. Painful. There were times I didn't know if I'd make it. I know some families - many of them long-time veterans of this conference - will read this and wonder why. I realize that for many families, the conference is a time to connect with the only other people in the world who can possibly understand what they're going through. A time to get advice from clinical folks who know how to at least attempt to untangle the tangled web of symptoms Batten disease kids face. In that sense at least, Chicago was easier than Rochester in '07. I don't like it, because it acknowledges that my sister has this disease, but I now know that I belong.

I was in the middle of a research session on Saturday morning when solace came to me in the form of a blinking red light on my BlackBerry. My sister had sent me an email - an email she typed thanks to a fantastic little program on her laptop that says the characters aloud as she punches the keys. And there on the phone's tiny little screen was my sister's heart and soul - her journal entry recounting our vacation in the Virgin Islands:

We went to the virgin islands. John saw a little shark and it ate a fish right in front of his knee. Scary! A BIG iguana sat under my lounge chair. He was as big as sunny with a tail as long as a snake.

From that point on, my day only got crazier, but unlike the prior 36 hours in the Chicago hotel, I flew from session to conversation to PSA filming to session to basement gym treadmill to conversation to banquet to hotel bar (where I could still be found at 12:30 in the morning, less than seven hours before my ride to the airport was scheduled to appear in the drive out front) on the wings of an angel. And as I sat exhausted on the plane the next morning, I felt hollowed out but also more whole, and I knew then that my sister's courage had gotten me through yet another dip in the roller coaster at a time when I was not strong enough to ride it alone.

Dream Therapy

2010-07-30T16:41:00.000-04:00

My first full day in Chicago is not in the books, and I've already managed to glean a lot of great information about infantile and late infantile research. I look forward to sharing many details in our summer newsletter. It'll be delivered in the next few weeks, so if you haven't already, please be sure to go to our website and sign up to receive it!

Talking to scientists - getting the scoop on where things stand straight from the source - is incredibly important to the work we do at Taylor's Tale. It's not enough to help me sleep at night, though. Those conversations give me plenty to chew on, but I go somewhere else for my daily dose of inspiration - a medication I sorely need whenever I start to feel angry at a world that includes Batten disease or get impatient about the speed of science.

Today's dose of inspiration is this picture of Taylor and our dad while on vacation in the Virgin Islands last weekend. Dad told a joke at his own expense and asked T if he should puff up his chest for the camera. Right as I snapped the picture, T considered this and laughed. It was the best moment of that day. That's the kind of moment that helps me run faster and fight harder. It's the kind of moment that makes my dreams good again.

Déjà vu

2010-07-30T00:22:00.001-04:00

I arrived in Chicago a few hours ago for the Batten Disease Support and Research Association (BDSRA) annual conference.

As I walked into the hotel lobby, I couldn't help feeling as though I'd been here before. I have, in fact, only been to Chicago once before, and that was for a work conference at a place with a view of Michigan Avenue. What I remembered, rather, was the moment my mom and I entered a different hotel in Rochester three years ago for our first BDSRA conference, which that year was paired with the international scientific congress on neuronal ceroid lipofuscinosis (NCL), the fancy name for Batten disease. We were still new to this then, not quite 12 months removed from that fateful day in July when a geneticist told my parents that their youngest daughter was going to die. We were scared because we were still getting to know Batten disease at that point. We were scared because we knew the conference hotel would be teeming with kids far more affected than Taylor at the time - our unwanted crystal balls. And yet, encasing the fear that resided deep within us like a hard, defiant shell was an enormous sense of confidence and our untarnished, shared belief that T would be different, that we would win.

I still wear that shell, but its once spotless exterior is covered in nicks after four hard years of watching a little girl I love, and our family, bend (but not break - not yet) under the weight of the tragedy that was encoded in all of T's genes and half of mine. I just realized that I never blogged on the most recent anniversary of T's diagnosis - July 24, one week ago tomorrow. I wonder now if counting those years ever mattered, or if it ever will. One thing Batten disease has managed to teach me, after all, is the importance of cherishing each day. I am simply too human to tackle this whole years or even months at a time. So instead, I tackle each day. I am not quite the same person I was when I walked into that Rochester hotel three years ago. In some ways, I am weaker. And yet, I am stronger - buoyed by the enduring hope that all of our friends' and donors' great gifts of time, friendship, love and money have given me. On Saturday night, I will award another research grant on behalf of Taylor's Tale as well as all those who support us and all those we aim to save. And for another 365 days, I will believe.

Major Victory Scored for Rare Disease Community

2010-07-18T14:31:00.000-04:00

Thanks to our partner, the Kakkis EveryLife Foundation, for their work on behalf of the rare disease community. The lives of children with Batten disease depend on not only the momentous work being done in research labs across the nation and world, but also on the ability of this research to make the leap from bench to bedside. The Kakkis Foundation's CureTheProcess campaign - an effort Taylor's Tale endorsed earlier this year - is dedicated to putting treatments for rare/orphan diseases like Batten disease on the fast track.

A major victory was just scored on behalf of everyone who suffers from rare/orphan diseases, due in large part to the work of our friends at Kakkis. Read the press release.

Petals Off a Rose

2010-07-04T14:57:00.002-04:00

It is July 4, a beautiful day in Charlotte. The Yankees game is on television, and the team in pinstripes is threatening to score. In a few hours, we will join friends and family for a cookout and, later, fireworks.

My mind and my heart, though, are on Oak Island off the coast of North Carolina, in the high-ceilinged kitchen of our beach house. I am 12. My mom is slicing a watermelon, and my grandmother is folding our quilt that doubles as a picnic blanket into a perfect rectangle. The men are sweating in their khaki shorts on the fake leather couches in the adjoining den. My brother, Stephen, is in the corner, playing a handheld video game. I am at the kitchen table - the same table that years later will sit in my college apartment and, after that, my post-graduation apartment back home, and finally, the bonus room in my house. I am drawing pictures in bright colors and eating a popsicle. Some of the cherry-flavored juices dribble onto my picture. I give one of my cartoon characters a red shirt to hide the spots. We are just a few hours away from piling into the car and driving seven miles down Main Street and over the bridge to the mainland and into the picturesque town of Southport on the shores of the Cape Fear River. Before reaching the waterfront park, we will stop at Hardee's for fried chicken and biscuits and mashed potatoes and gravy and sweet tea. At the park, we will spread our blanket among the others and stretch out to eat under a hazy blue sky. After dinner, my brother and I will walk down to the pier and buy red, white and blue snow cones. Someone gives us 10 dollars to buy fluorescent light rings that we will wear around our necks after the sun goes down. Just before nine, I put my head in my grandmother's lap and wait for the fireworks to light up the sky, an easy smile stretched across my small face.

It is just one version of a memory that was a staple of my childhood. From year to year, the minor details may have changed - for example, one year, Stephen and I didn't make it to the trailer that sold snow cones, because we ran through the sidewalk sprinklers after dinner until the adults worried, because it was getting dark and they didn't want to lose us in the throng of people on the lawn.

I haven't spent July 4 on the Southport waterfront in 12 years. My grandparents sold the beach house on Oak Island when I was in high school. I have been back to the island twice since then, and only once for an overnight trip. On that particular trip, I was relieved to find that the house was still there. I was sad to see the unfamiliar sedan parked in the unpaved driveway. My mom, grandmother, Taylor and I stayed in a friend's condo on the Intracoastal Waterway half a mile from the old house. I had a migraine the night we drove to Southport to sit on the swings a stone's throw from the picnic table that still had my name carved into the top in block letters and found my six-year-old sister's constant chattering unbearable. I yelled at her a lot. During a moment of temporary sanity, though, I took a picture of the others sitting together on the swing. It is in a frame in my guest room today. I keep the door to that room closed most of the time, but sometimes I'll walk in there just to look at that picture. In it, T's strawberry-blonde hair is long. As always, she is in pink. She can clearly see me standing there with the camera pointed at her, and she is looking at me. Her feet don't touch the ground. Almost exactly one year later, she will be diagnosed with Batten disease.

A neurodegenerative disease is, in a way, like the passage of time. I have faith that there will be always something new to look forward to. After all, I met my husband around the time we sold the beach house. My mom had Taylor the last summer we spent there - a memory cemented by the picture of her very pregnant on the couch in the sun room. I met some of my closest friends on campus in Chapel Hill years later.

Time, though, while promising the creation of new happy memories, strips some of the old ones away. Since Taylor was diagnosed with Batten disease in the summer of '06, I have lost my great-grandmother, worried constantly about my grandfather's failing physical health and the unimaginable stress my parents have to endure, watched degenerative brain disease tighten its long-held grip on one of my grandmothers and spring a sudden, forceful, rapidly moving attack on the other. Meanwhile, Batten, in its own dreadful way, has systematically robbed my beautiful little sister completely of sight, to some degree speech and to great degree happiness. Time has a way of washing away many of the painful memories, but sometimes it also steals from us the memories that are most beautiful, like pulling petals off a rose.

Moments of Wonder

2010-07-03T19:51:00.001-04:00

Life is unpredictable.

Sometimes, beautiful sunrises are followed by unfortunate phone calls that haunt the recipients for the rest of their lives. Other times, tragic accidents bring two people together who otherwise may never have met, and those people fall in love. We struggle to get through some days and claw and scratch our way out of the worst of them. When we find ourselves in a long, dark tunnel, it's the light at the end, either seen or imagined - breathing in mountaintop air, hearing the laugh of a child, getting a hug from a friend - that helps us find our way.

Life is a mixed bag.

In the middle of the night last night, I gave up on sleep. Seeing that my husband had had better luck finding peace, I climbed out of bed gingerly, tiptoed around my sleeping dog's bed on the floor of our room, opened the door quietly and padded down the hall to our great room. I sat down on the couch. I briefly took in, for the first time, the way light and shadows play on the 18-foot ceiling and walls when the world is sleeping. And then, without warning, I started to cry. But the sun still rose this morning, and not 10 hours after my solitary moment of grief, I laced up my shoes and stepped outside into a beautiful, sub-90-degree July day under bright green leaves that whispered in the midday breeze and a blue sky unmarred by clouds. I took a walk with my husband and my dog and breathed it all in, and I was happy.

Life is full of terrible pain and grief, but even in its darkest hours, life can be illuminated by moments of great wonder and beauty. And those - those are the moments that make life worth living.

It's Been a Long Time

2010-06-28T22:04:00.002-04:00

It's been quite a long time since I took such an extended break from my blog. I had surgery to fix a broken (obliterated apparently) nose - another fun soccer souvenir - 17 days ago, and the recovery period has officially turned me into a couch potato (minus the laptop in the evenings at least - usually one of my resident couch friends). In any case, I just have to figure that having that much work done close to my thinker has totally robbed me of any creative juices - juices I'm still searching for even now. In any case, I did want to blog tonight, if only to:

1) let everyone know that I'm still here...

and

2) thank the wonderful hostesses, attendees and all others who supported Taylor's Tale last night at our Australia wine tasting, the last in the Wine Around the World for Taylor series of tastings. Yesterday also marked the birthday of the best mom in the whole world (the mom of Taylor, her big brother and yours truly), so our wine tasting was made complete by tasty cupcakes and a toast to birthday wishes (I know of at least one wish my mom made last night - just guessing - when she blew out that candle). Please check out our website for a recap of the event and, eventually, photos. If you are on Facebook, you can view the photos now on our page.

That's it - for now! More to come later.

What Do You Wish For?

2010-06-10T19:19:00.001-04:00

I went out for a sweet treat last night with my two favorite girls - Taylor and my mom. We experienced the euphoria of Yoforia, a new frozen yogurt shop situated conveniently (i.e. dangerously) on the way home from my office. After eating our yogurt piled high with scrumptious toppings, we sat on the bench in front of the fountain outside to watch the sky as it thought about storming, then sprinkled a few stray drops, then shifted colors like a kaleidescope until finally fading into early dusk.

I can't walk by a fountain without making a wish - a trait that was developed through countless nights at the old SouthPark Mall fountain outside the now long-extinct Baskin Robbins with my dad and enhanced in recent years by my increased need for fulfilled wishes. So as the late afternoon sky changed from cotton candy blue to deep purple and lavender to fiery orange and back again, we pulled out our wallets and produced handfuls of change, and we fed the fountain with pennies, nickels, dimes and quarters to the fountain's and our hearts' content, squeezing our eyes shut tight and making a wish on every last coin.

I wish for a strong run on the rain-soaked streets of my neighborhood as soon as I publish this post. I wish for a sound night's sleep tonight. I wish for a successful surgery tomorrow morning to fix the nose I broke playing soccer three months ago. I wish to feel well enough this weekend to watch the Americans at least play England to a draw in their World Cup opener. I wish for a summer filled with charmed memories created from here to the white sands of the Virgin Islands - images and smiles to bottle up for another day. I wish for a coming year in which the dark shadow of Batten disease moves at the pace of a snail - or not at all - to envelop my sister. I wish to see her grow up to experience the same milestones I have been lucky enough to live - graduating from high school and college, falling in love, getting married, discovering oneself and finding a way in the world. I wish for a cure. I wish for the strength, the courage and, above all, the miracle that could write her happy ending.

Give Me a Sail

2010-06-06T21:34:00.000-04:00

Learning that someone you love has Batten disease is like being stabbed with a serrated knife. Watching Batten disease attack someone you love is like twisting that knife a little more deeply over days, weeks, months and years.

After almost four years of this, I know a lot more about Batten disease but still nothing more about the future than I did on day one. If there is one thing I do know, though, it's that I have to keep breathing.

Because tomorrow, the sun will rise...and who knows what the tide will bring?

Give me a sail.

Ride the Booty Loop for Taylor's Tale!

2010-06-03T23:41:00.002-04:00

Check it out - one of our board members, Anne Pipkin, is leading an effort to ride Charlotte's famous 24 Hours of Booty in honor of Taylor's Tale. See Anne's message below for more details. Thank you, Anne!

p.s. if you would like to wear a Taylor's Tale t-shirt for the ride but do not have one, please email me.

JOIN US ON JULY 31 AS WE RIDE THE BOOTY LOOP WITH TAYLOR'S TALE ON OUR BACKS!

Even though the weekend registration is full, on Saturday, July 31, we can all ride together in honor of Taylor's Tale! If you do not want to ride, visit our web page and support the 24 Hours of Booty organization, which aims to unite all people suffering from disease.

Cut and paste the link below; then click on Charlotte; then Register; then Reboot; then Register as a Team Member; then input Taylor's Tale as the team name; then click Join Team; then enter the team password (taylorrocks); then enter your info. Ride ten minutes or ten hours...but join us!

Our base camp will be 1626 Queens Road West...come one, come all!
http://www.24hoursofbooty.org/site/TRC

Batten Disease Awareness Weekend

2010-06-03T23:05:00.003-04:00

This weekend marks International Batten Disease Awareness Weekend, a time dedicated to raising awareness of Batten disease. For Taylor’s Tale, it’s a time to share our story.

If you can do just three of the following easy ideas to raise awareness of Taylor’s Tale and Batten disease sometime this weekend, you can help us write a happy ending for all children like Taylor. For more ideas, click here.

How You Can Help

Watch the Taylor's Tale video if you haven't seen it, and share it with friends either through Causes on Facebook, by posting the link or by sending by email.

Share our Facebook page with your friends by recommending it.

Pledge your status on Facebook, Twitter, etc. with a donation call to action and link to the Taylor’s Tale site (Example: Every child deserves a happy ending. Help children with Batten disease by making a donation at www.taylorstale.com.)

Wear your Taylor's Tale T-shirt over the weekend. If you don’t have one, don purple clothing or a purple ribbon.

Share Taylor’s story with three people who have never heard of Taylor's Tale.

Make your email signature purple for the weekend and following week.

Example:

Laura King Edwards
Taylor's Tale

7804 Fairview Road, Box 135
Charlotte, NC 28226-4998

laura@taylorstale.com

www.taylorstale.com * http://writethehappyending.blogspot.com
http://twitter.com/taylorstale * http://www.facebook.com/pages/Taylors-Tale-Fighting-Batten-Disease/70019819739

Every Child Deserves a Happy Ending

Signed in purple to help write the happy ending for Taylor’s Tale by finding a cure for Batten disease.

Wicked

2010-05-24T21:19:00.000-04:00

Last night, my mom and I took Taylor to see the Broadway show Wicked on the wings of someone's kindness. It was an amazing production - one my mom and I both left saying we'd see again in a heartbeat. Near the end of the first act, when Elphaba (a.k.a. the Wicked Witch of the West) rose high above the stage crowned by an eerily beautiful blue light, every single last little white-blonde hair on my arms stood up. But when my sister squeezed my hand and laughed out loud at the billy goat professor Doctor Dillamond's baaaaaahhhs, my heart soared.

Thank you to our anonymous angel for the gift of a memory my two favorite girls and I will never forget.

Anonymous Angel

2010-05-13T23:51:00.000-04:00

Last weekend, my mom asked me if I believe everything happens for a reason. I didn't really give her a straight answer. You see, I used to think everything happened for a reason. Then, after 24 years, four months and 23 days, I learned that my sister was born with a defective gene that affects her ability to produce an important enzyme, giving her Batten disease. In the three years, nine months and 13 days since that crushing diagnosis, I still haven't landed on any good reason for Taylor to be sick.

I had a rough start to my week. Then, Tuesday night, I had a late soccer game. We were all stretching on the sidelines before the game started when the lights suddenly went out. That gave us about 20 minutes to kill in the dark while we waited for a few phone calls to be made and the lights to warm back up. So as we were standing there, we talked about random things. One of my teammates mentioned she had three tickets to Wicked that she needed to sell. She'd already seen the Broadway show about the witches of Oz, she said. I said my little sister, who is sick, would give anything to go. She told me she'd sell the $80 tickets to me for $65 apiece.

Taylor loves The Wizard of Oz. She collects Dorothy snow globes and has wanted to see Wicked very badly for a very long time - ever since our good friend, Callie, told her about it. So of course I told my teammate I'd buy the tickets.

We had another game tonight, so I headed to the field with a $195 check made out to my teammate with the tickets. When I got there, I told her we could just make the exchange after the game. She responded by saying we should make the switch before we played - that she wanted to talk to me anyway. When we got out of earshot of the rest of our team, she told me she didn't need my check. She wasn't allowed to say who, but someone on the team had bought the tickets for me.

On Monday, I was gearing up for a really bad week. I could feel myself heading downhill on the never-ending roller coaster. But as I drove home tonight, I counted three great acts of kindness directed at my little sister and our family in less than a week: the first two by T's classmates, and the last by an anonymous angel who plays soccer with me once or twice a week.

I still don't think everything happens for a reason. Until T is cured, any silver lining in her disease will elude me. But I do believe that T attends the school she does for a reason. And I do believe that those lights went out on the field Tuesday night for a reason. Thanks to a lot of compassionate kids, Taylor's Tale is $1,250 closer to awarding another year of funding for an important research project this July. And thanks to my anonymous angel, on the evening of Sunday, May 23, I'll get to see my sister smile big enough to get me through the inevitable dips in the roller coaster.

Sweetness

2010-05-13T19:17:00.001-04:00

I've dedicated several posts on my blog over the last two years to Taylor's Girls on the Run experience. It was, in a word, inspiring.

The mission of Girls on the Run is 'to educate and prepare girls for a lifetime of self-respect and healthy living.' The program changed T's life, alright. Blind and fighting Batten disease, she completed her first 5K with her running buddy, Mary-Kate. Five months later, she crossed the finish line again. Throughout her stint on her school's Girls on the Run team, she overcame obstacles no one should ever have to face. When it was all said and done, I think my little sister believed in herself more than she ever had before. And in the meantime, she changed a lot of other people's lives, too - including mine.

T aged out of Girls on the Run last May - the end of her fifth grade year; Girls on Track, the Girls on the Run program for sixth, seventh and eighth graders, is not being offered at her school. But despite the fact that she no longer stays after school to run laps around the track with her classmates, T is still a part of the team.

Yesterday morning, my parents learned that the girls on this year's team were having a bake sale in the school cafeteria; the event served as the community service project all teams complete as part of their curriculum. After just a short time selling cookies, cupcakes and all kinds of sweet treats, the girls had raised $750. The beneficiary of their hard work and dedication? Taylor's Tale - and the search for a cure for the disease their former teammate is battling.

In my last post, just two night ago, I talked about the kindness of T's sixth grade classmates - the ones who have been her friends since she arrived at Fletcher almost four years ago as a girl who could still see (mostly) and who had just been slapped with a diagnosis of Batten disease. Tonight, my heart is filled with hope thanks to the younger girls who now follow in her footsteps - literally - running laps on the same track at Fletcher several days a week, completing the same 5Ks twice a year and - most importantly - believing in themselves. They may not know it, but they've accomplished something else through their kind deeds. They've given a desperate big sister a reminder of all the good there is in this world. They've given this desperate big sister reason to believe.

Simple Kindness

2010-05-11T20:35:00.000-04:00

I have worried so much about my sister lately - for all of the regular reasons, of course, but also because she's in the sixth grade. Middle school was tough for me. My awkward stage dragged on for about three years. I liked to play soccer and build forts in the woods and play video games and wear t-shirts and jeans - not exactly the ticket to popularity for a girl going through puberty. It wasn't until much later that I realized most of my classmates were going through their own confused versions of growing up. This year, I've watched T face all of the normal challenges an 11-year-old girl faces in addition to the challenges of losing her vision and fighting Batten disease. She's done it with a smile on her face - and unlike her big sister, she's never been too afraid to follow her heart.

A few weeks ago, several of Taylor's friends dreamed up the idea to have a fundraiser at school for Taylor's Tale. They got approval from the powers that be, organized and promoted it. Last Friday was the big day. T's classmates paid a dollar to wear pajamas to school. Several of the girls' moms made popcorn in advance, and the girls sold snacks during lunch. At the end of the school day, T's friends handed my mom a bulging envelope decorated with sticky notes that told the story: the kids had raised nearly $500.

That night, the girls and their moms hit uptown Charlotte for girls' night out, featuring dinner and a play. It wasn't until much later that Mom and T returned home, where T put on her pink and orange polka dot pjs for the second time that day and climbed into bed. She was exhausted, but she went to sleep happy.

I want to thank everyone who had a hand in what turned out to be a great day for Taylor's Tale and the fight for a cure for Batten disease. Most of all, though, I want to thank the girls who take care of my sister the five days a week they're all in school and whose love lifts her up on the days they're apart. Sometimes, the greatest act of all is simple kindness.

Fly High

2010-05-05T22:53:00.005-04:00

I was driving to the office this morning, counting the hours of good sleep I've gotten lately (very few) and wishing I was still in my bed. But then, rush hour traffic graced me with yet another red light, and as I sat there in my car, I suddenly stopped thinking about when I would get to my email and discovered the way the leaves of the big, old trees, silent sentries watching over Providence Road, filtered the morning sunlight. And I knew then that if I was still asleep, I would have missed that.

Taylor has never once forgotten to look for joy in the most unexpected places and has a knack for finding it when most of us would just pass on by. She can't see her movies, so she listens. She couldn't see the over-the-top production side of the concerts she's attended the past several years, but she can sing the lyrics to every song and will be the first to tell you that the Jonas Brothers are 'hot.' She couldn't see the blooming flowers and blue sky Mom and I saw as the three of us took a walk recently, but she proudly held Sunny's leash, felt the cool spring breeze on her face, put one foot after the other and never once complained that she was the only one who couldn't enjoy the azaleas. And though she needed my help finding each rung of the ladder on our cousins' playground set when we visited them last month, when it was her turn to swing, she swung higher than anyone. She had a huge grin on her face, and she reached for the sky.

Fly high, Teaser. I love you.

ourboys 5K

2010-05-03T17:21:00.002-04:00

This Saturday marks the fourth annual ourboys 5K to benefit the Batten Disease Support and Research Association (BDSRA). The event starts at 8 a.m. at Harris Road Middle School in Concord, N.C. The event includes a 5K walk/run, one-mile fun run, children's games, activities and a car wash. To register online, click here.

In addition to funding research, BDSRA provides much-needed support services to families all over the world. To learn more, click here.

Believe in T

2010-04-20T21:15:00.005-04:00

My sister's teacher forwarded a touching story about a little boy named Teddy Stoddard to my parents and many others, and it quickly made its way to me. The short version of the story is that the grubby, withdrawn, sometimes unpleasant Teddy earns a place in his stern teacher's heart when she discovers that he had been forced to endure the death of his mother two years before. The teacher was immediately ashamed of the way she had treated Teddy. Soon afterward, Teddy gave the teacher two Christmas gifts: a near-empty bottle of perfume and a rhinestone bracelet with some of the stones missing, both wrapped in a brown paper grocery bag. Some of the other children laughed and poked fun at Teddy's gifts, but the teacher treasured them. From that day on, the two developed a friendship that withstood the test of time. And many years later, after Teddy became a doctor, he thanked his old teacher for changing his life.

A quick Google search revealed that little Teddy Stoddard's story was a work of fiction first published as such in a magazine in 1976. I can imagine that same discovery has marked the end of the story's significance for many people. Not me.

Though she is not grubby or unpleasant, I still see some of my sister in Teddy. Taylor is beautiful and smart, brave and kindhearted. But Taylor is fighting her own battle, and because of that, she is occasionally misunderstood. She has Batten disease. Because blindness is part of her disease, her eyes don't act the same way sighted people's eyes act. And if she's in a group of people, she'll often get very quiet. Some people may think that means she's not paying attention. But she is; she's listening. She's always listening.

Some may think it would be easy to give up on Taylor. There are plenty of other children out there who can see. There are plenty of other children who aren't up against something as cruel as Batten disease. But like the fictional Teddy Stoddard, Taylor is filled with dreams. Because of an unfortunate roll of the genetic dice, her dreams may be harder to reach. But that's never stopped Taylor from reaching up toward the sky; running 5Ks, going to school dances, learning Braille, memorizing the words to all of her favorite songs, getting straight As and teaching me more about love and dreams than I ever imagined possible.

Teddy's story may be fictional, but Taylor's is very real. And regardless of how you feel about Teddy's story, remember the essence of its closing lines:

Just try to make a difference in someone's life today.

Believe in angels - then return the favor.

Don't ever stop believing in people who still believe in their dreams.

Don't ever stop believing in T.

Letter to an Angel

2010-04-13T18:17:00.005-04:00

Dear Daniel ,

I hope you can find a few minutes between adventures to read my letter! There must be lots of mountains to ski down in heaven. Are they as beautiful as Mammoth Mountain? As you're racing down the slopes, feel the wind in your hair and the sun on your face, but also the presence of your family and friends. They love you so much, and they will always be by your side.

My little sister, Taylor, has Batten disease, too; in fact, that's how I got to know your family. You and Taylor have so much in common! You are both very brave, and whenever the grownups get really sad, you remind them how to smile. And just like you wouldn't let Batten disease stop you from going to the ocean and skiing, Taylor hasn't let Batten disease stop her from going to school with her friends or singing and dancing.

I am afraid of Batten disease, but Taylor helps me stay strong, just like you help your mommy and daddy and Lauren and David stay strong. It's easy to want to fight for fighters like you and Taylor. You are my heroes. I write lots of stories about Taylor, and I even wrote a story about you when you turned 10 years old in January. Everyone who read your story told me you inspired them, and I just said, "Me too!"

I am so sorry we weren't able to find a cure for Batten disease in time to save you, Daniel. Everyone already misses you here, but you are with God now, and I know He will keep you safe. Your life inspired so many people, and I know it will help give me the strength I need to keep fighting for Taylor and all of the other children with Batten disease. Your mommy told me that after your surgery, she felt like she was seeing the brilliant sunlight of hope for the first time. Even though your body has left us now, Daniel, your spirit still burns brightly. I'm not surprised that someone who loves adventures as much as you do would bring so much hope to so many people. Your life was a miracle. And one day, because of the gifts you gave us, I will find mine.

Rest in peace, be filled with the grace of God's love and take those mountains in heaven by storm! We love you.

Love,

Laura

Daniel Kerner

1/13/2000 - 4/12/2010

944th

2010-04-11T23:23:00.008-04:00

Early yesterday morning, I ran in the Tar Heel 10 Miler road race on the streets of Chapel Hill and the campus of my alma mater, North Carolina. The chilly, dew-kissed April morning danced on my skin; centuries-old buildings, hot pink and white azaleas and blooming dogwoods provided the landscape. I jogged through the historic Gimghoul district, down streets I'd never visited as an undergrad, up steep hills on heavily trafficked roads and down a wooded lane past the charactered Forest Theater. And, about an hour and a half after the starting horn sounded, I entered a sun-filled Kenan Stadium for one lap around the track before crossing the finish line - the 944th runner in the field to do so.

I didn't come close to winning this race and never will - not in my short-distance runner's body, and not as long as I'm dependent upon the joints I've all but ruined on the soccer field. Nevertheless, I experienced beautiful pockets of Chapel Hill for the first time. I got a great workout. I had fun. I had an excuse to spend the weekend with my best friend from college, who still lives near Chapel Hill. And I shaved three minutes off my per-mile pace time since my last race - a half marathon in December. 943 people beat me to the finish line, but I achieved every single one of my goals.

Batten disease is different. There is no margin for error, no success sweet enough to overcome the loss of children - something that happens everyday. I don't do what I do - write this blog, run board meetings, pray, you name it - to finish in the middle of the pack. I don't do it to feel good. It helps me believe, but it doesn't feel really good yet, because we don't have a cure. Sometimes, I get too caught up in the details - the mechanics - of what Taylor's Tale is trying to do. When that happens, I call my parents and ask them what they're up to. If I can, I'll go see my sister - kiss her on the top of her head, ask her for a hug, take a walk with her or snuggle on the couch to watch a movie. If I can't see Taylor in person, I'll ask my parents to hand her the phone. If she's watching TV, I'm not apt to garner very much of her attention. I'll get a 'hi Laura' right when she takes the phone. If I'm lucky, I'll also get a few other words before she hands the phone off to get back to her show. But it's enough. In my world, being able to call my sister and 'talk' to her - even if it's a one-sided conversation - is a blessing. I stopped taking more for granted a long time ago. No matter how I recenter myself, I always manage to do so, somehow.

Time wasn't the most important element of my race yesterday. Crossing the finish line was enough. When it comes to Batten disease, though, time is everything. Every month that goes by without a cure, more children die. I've never stopped believing that we can cure this awful disease. I know we'll cross the finish line someday. For the sake of all of the children who need our help NOW, though, my goal is to run FASTER. If I coast, they lose - and one day, I will lie awake in bed at night, wishing I could have one of those one-sided phone calls with my sister again.

Pray for Daniel

2010-04-11T23:12:00.003-04:00

I wrote an article about Daniel Kerner that appeared in our winter e-newsletter. Daniel, who turned 10 years old in January and is battling late infantile Batten disease, and his family have a special place in my heart. Tonight, they need your prayers.

If you don't receive our e-newsletter, you can read Daniel's story on the Taylor's Tale Web site here.

To Daniel, Joanna, Marc, Lauren and David - stay strong.

The Possible

2010-03-29T17:30:00.004-04:00

Thanks to Jim Dunlevy, Raymond Felton, Rufus and the Charlotte Bobcats for bringing smiles to Taylor's face last Friday night. Taylor and my 10-year-old nephew, Joey, had a memorable night at the arena - one that included access to the pre-game shootaround, dinner in the Back Court, high fives to the players as they ran through the tunnel from the locker room to the court and lower level seats for the team's win over the Wizards. It was Joey's first NBA basketball game and possibly T's first since her world went completely dark. It didn't matter. She still cheered and clapped when the Bobcats did well. She still smiled from ear to ear when Raymond Felton walked over to our seats at the shootaround and said her name. And she still had a big hug for Rufus as soon as she felt the team mascot's big, furry arm draped over her shoulders.

T knows that Raymond Felton was my favorite player during my years at Carolina. And despite all of the obstacles standing in her way, she still believes that someday, she will walk the same campus that her older sister and the Bobcats' starting point guard once did.

To me, that's what dreams are all about. Believing makes the improbable possible. Having faith AND working hard can make the possible come true.

Renewal

2010-03-21T16:33:00.004-04:00

We had a wet winter here in Charlotte. My grass is already a rich, vibrant green, my roses are already coming to life and the weeping willow we planted in the backyard two summers ago is already stretching its limbs toward the skies after its months-long slumber. Yesterday, we were graced with clear blue skies and temperatures in the mid-70s here in North Carolina. Not even March Madness could keep me, a self-described college basketball nut, indoors.

More than just a physical renewal, spring inspires a spiritual sort of rebirth. As I ran laps around the pond in our neighborhood yesterday morning, my sense of 'believe' was stronger than it has been in a long, long time.

Mom, Dad and Taylor escaped to Charleston for a quick renewal of their own during the middle of T's spring break this past week. On Friday, what was supposed to be an afternoon departure turned into a walk along the city's waterfront park and famous Battery that stretched into the early evening hours. There, an 11-year-old girl going through an unimaginable illness and two parents going through an unimaginable pain found solace in the sunshine, the breeze and the sound of gentle waves as they lapped up against the walls of the Battery.

Believe.

3.1 for Garrett's Wings

2010-03-11T19:54:00.003-05:00

Runners: if you're looking for a race to run next Saturday, March 20, please consider running in the Run the Creek 5K to support Garrett's Wings, a charity founded by a Charlotte-area couple who lost their young son, Garrett, to infantile Batten disease in December 2007. The race course features beautiful rolling hills and is appropriate for runners of all skill levels. To register, click here.

Garrett's Wings provides comfort and non-medical care for terminally ill children and their families as well as support for infantile Batten disease research. To learn more, visit their Web site at www.garrettswings.org.

Dancing in the Stars

2010-03-07T17:43:00.005-05:00

Taylor went to her first school dance on Friday night. Decked out in a sparkly pink and purple top adorned with dream catchers over a denim skirt, chocolate tights and Ugg boots, my sister spent two hours on the arm of her date, Scott. And since parents were strictly forbidden from the school grounds during the dance by the sixth graders, I was the lucky girl who got to spend a Friday evening as a fly on the wall (the only fly in the world that can operate a digital camera and camcorder), there only if Taylor needed help (she didn't).

Having never attended a dance with a date until my junior prom when I was 17, I got to bear witness, via my much younger sister, the best parts of 'crushing' on a boy pre-high school (and all of the attending drama). The smiles on Taylor's face said everything. There were no teen-charged mixed signals to analyze: she was having the time of her life. And there, in the Fletcher School cafeteria with '80s music playing in the background and neon deejay lights painting the air, the fly on the wall was having the time of its life, too - holding assorted cell phones for pre-teens, catching the scenery on camera and bottling up the dream catcher girl's courage and her date's kindness for the days to come.

Eat Pizza, Watch Basketball, Help Find a Cure for Batten Disease

2010-03-07T17:34:00.002-05:00

Join us at The Pizza Peel on Saturday, March 13 at 1 p.m. for a special ACC men's basketball tournament party, or eat at The Pizza Peel anytime between March 12 and March 14. Both are great ways to help support the search for a cure for Batten disease, as The Pizza Peel will donate a portion of its weekend proceeds to Taylor's Tale.

The viewing party on Saturday, March 13 at 1 p.m. will include a beer bracket tournament! We especially hope to see you that afternoon, but no matter what day you choose, you'll be supporting Taylor's Tale. And, you'll have access to great daily specials regardless of when you decide to drop in that weekend:

$1.50 Bud Light and PBR all weekend
1/2 price bottles of wine on Friday and Saturday
$3 mimosas on Sunday

The Pizza Peel is located across from Cotswold Shopping Center in Charlotte. To view a menu, visit the restaurant's Web site here.

Today Was a Fairytale

2010-03-03T22:55:00.017-05:00

Thank you to the following people for organizing a magical afternoon this past Sunday at Ruggero Piano in Raleigh: Polly Greene, Susan Burnette, Cree Russell, Dottie Buster, Pamela Tsai, Chris Dobson, Deborah and Richard Ruggero, all of the students who spent a beautiful weekend afternoon making music for Taylor's Tale and all of the family and friends who attended.

Thank you also to the piano student and his friend, a cellist, who played a beautiful, impromptu rendition of Taylor Swift's "You Belong to Me" after learning that it is one of Taylor's favorite songs. My sister was in the room when this happened. I knew it was coming and made a point to watch her face as the song began.

Often, T will get very quiet and appear to gaze off into empty space, and sometimes, the people around her assume that she's zoning out. I think that many people forget (or never realize in the first place) that she is blind - which perfectly explains the daydreamy look she gets. Her eyes are beautiful and still have the power to betray the way she feels at any given moment, but mechanically speaking, they have nowhere to look. And when she grows silent, it's usually because she's listening. In the absence of visual stimuli, T has mastered the art of picking up even the most minute auditory cues. So when others think she's 'zoning out,' she's actually 100% invested in the moment and is likely more wholly aware of all of its nuances than the sighted people around her.

As the notes of "You Belong to Me" danced from the piano and cello on the stage to where T was sitting in the crowd, it was as if someone had suddenly switched on a light inside of her. Rarely overtly emotional, T instead allowed herself only the slightest smile - but a smile that illuminated her face just the same.

I regret not getting the names of the musicians who brought real happiness to my sister on Sunday. In case either of them happen to stumble across these words, though, I want them to know that if I had been thinking clearly when I thanked them in person on Sunday, I would have said - to borrow from the title of another Taylor Swift song - Today Was a Fairytale.

World Rare Disease Day and the Global Genes Project

2010-02-23T22:59:00.003-05:00

World Rare Disease Day is this coming Sunday, February 28. Please join the Global Genes Project and people all over the world by wearing jeans this Friday to show your support!

The Global Genes Project, an initiative of the Children's Rare Disease Network, is a grassroots effort that was inspired by one rare disease parent advocate in 2009. Its main goals are to enhance awareness of rare diseases and support the millions of children and adults who are affected by them.

Approximately 7,000 rare diseases affect more than 30 million people - 75% of which are children. Batten disease is classified as a rare disease - which means that it doesn't garner nearly enough funding for crucial research or support services for affected families. The life of even a single child is priceless, but there are children living with Batten disease all over the globe. Please help us save every last one of them.

New Link Between Alzheimer's and Batten Disease Discovered

2010-02-17T20:49:00.006-05:00

1. The body is an intricate network of systems and processes that all, somehow, work together to make us what and who we are - controlling everything from the most basic life functions to what we dream of, who we love and when we cry.

2. Any one of these systems or processes can break or malfunction - in a single moment on a fateful day, over many weeks, months or years or before we are even born, when the body's instructions are still being written.

All forms of NCL, or Batten disease, fall into a group known as lysosomal storage disorders, a group of about 40 diseases caused by a lack or severe deficiency of a lysosomal enzyme. Lysosomes function like garbage disposals. Basically, waste material is sent to lysosomes to be processed by lysosomal enzymes. If these enzymes are missing, the waste material builds up over time, and the cells get jammed with waste.

So essentially, children who suffer from Batten disease are destined to die young all because of a clogged drain.

3. All of the body's systems and processes are intricately entwined - and connections exist between many different diseases affecting different groups of people.

Two talented researchers, one of which is well-known in Batten disease circles, have invented a novel way to approach Alzheimer's disease - a progressive brain disease that affects as many as 5.3 million Americans. Through a series of experiments, Fred Maxwell, PhD, of the Weill Cornell Medical College, and Peter Lobel, PhD, of UMDNJ-Robert Wood Johnson Medical School, identified the administration of CLN2 (also known as TPP1), the enzyme that is missing in children with late infantile Batten disease, as a promising treatment for Alzheimer's. To learn more, click here.

We'll keep tabs on the ongoing development of this important work. In the meantime, I hope that the research and medical communities and the general public will not forget the children who desperately need enzymes like CLN2 to survive their brave fight with Batten disease.

Three Years

2010-02-09T22:19:00.006-05:00

Tonight marks the three-year anniversary of Chapter One, the event that started it all for Taylor's Tale. On the night of February 9, 2007, less than seven months removed from Taylor's crushing diagnosis, my family told our story publicly for the first time to about 160 guests in the home of two very kind friends, Leslie and Bruce Schlernitzauer. As we turned the last pages of Chapter One, the people there to share it with us joined the fight to cure Batten disease by donating nearly $40,000 to the cause. I still remember the feeling of hope that washed over me as the last guests departed and I discovered the extent of the evening's success.

Three years later, we're a 17-month old public charity. Seven of the dedicated women who helped make Chapter One happen - who were there starting with the very first steering committee meeting - sit on our board of directors today. The research project that was launched as a result of Chapter One is in its third year of funding and making exciting history in the effort to cure infantile Batten disease. Taylor's smiles and laughter still brighten the days of those who know and love her. And we are still fighting. Whether you've been with us from the very beginning, have stood by us in the past or have yet to write your own chapter of Taylor's Tale, the mere fact that you're reading this now helps me BELIEVE for the future.

Click on the links below to read other historical Chapter One-related posts and view photos of the night that inspired a movement.

Year Two Reflections Blog Post

Chapter One Blog Post

Chapter One Event Summary and Photos

Global Genes Project

2010-02-08T22:44:00.003-05:00

A new project led by the Children's Rare Disease Network has been established to raise awareness of rare diseases that affect children, such as Batten disease, and promote equal access to lifesaving treatments for those children. Learn more here.

My Birthday Wish

2010-02-06T21:11:00.004-05:00

I'm turning 28 on March 1, and I have just one birthday wish. Please consider making a gift to Taylor's Tale, the nonprofit organization I helped found in honor of my younger sister, Taylor, who has infantile Batten disease. Your gift will help us find a cure for children like her. Thank you in advance for your support!

To grant my birthday wish via Facebook, click here. Otherwise, you can make a donation using PayPal on our Web site.

What Disability?

2010-02-01T21:41:00.003-05:00

Watch this video about a father-son team in the University of Louisville marching band for a six-minute primer on determination, attitude and love. I understand this father's dedication because I see it in my parents everyday; I understand this son's perspective because I see so much of my sister in him.

Everyone has a gift; we must only find the courage to use it.

Patrick Henry Hughes

Winter Song

2010-01-30T20:29:00.006-05:00

Yesterday, I promised Taylor that if it snowed overnight, I would go sledding with her today.

This morning, I opened the blinds in my bedroom to find that a thin layer of snow, covered by a thicker layer of ice, had indeed blanketed my backyard. My house is perched on top of a hill that my four-year-old neighbor aptly named Mystery Mountain, though, and by the time John had shoveled the ice and snow from the curvy mountain pass (our driveway), we were too late to go sledding with T. When we finally arrived at my parents', she was already exhausted from flying down the slick streets on a sled with my dad and other neighborhood kids and their dads. Instead, I tromped down to the basement with her in my sledding outfit - leggings, warm-up pants, a thermal, fleece jacket and fleece hat - to play Wii bowling. I stood behind her and told her when to release the trigger to send the ball rolling down the virtual lane, and together, we almost beat Mom (who is ridiculously talented at some of the Wii Sports games, including boxing; today, she knocked me out with a killer shot to the kneecap). Just before John and I headed home, T and I played music together - she on her keyboard, I on her electric drum pad. We may not have gotten to fly down the frozen streets on her sled together, but we bowled, and we rocked, and she laughed and smiled. It was a good day.

Later this evening, John and I ate dinner in an unconventional spot - at the coffee table in our great room, by a crackling fire with most of the lights off and the shouts of kids outside, still sledding in the sub-20 degree night air, faint but close. Just as we finished, John happened to glance out the window and discover that it was snowing again - visible only by the flakes floating softly downward in a column bathed in the yellow light of the street lamp. As each flake completed its journey through the warm glow and out of sight, into the cold darkness of our frozen cul-de-sac, the neighborhood kids' shouts were silenced for a moment, and in their place I again heard T's laughter. I felt at once sad that I'd missed sledding with my sister and at the same moment intensely grateful for the afternoon we shared together instead. And as the last lonely flake left the light and entered the darkness, I smiled.

February Events

2010-01-26T20:59:00.003-05:00

We have two great events scheduled for February! If you fancy wine or music (or both!) and want to help support Batten disease research in 2010-2011, please consider joining us on February 11 and February 28.

On Thursday, February 11 at 6:30 p.m., join us for a wine tasting hosted by Tryon Distributors at the Rosewood Community Room, located on Providence Road in Charlotte. For a $35 tax-deductible donation to Taylor's Tale, you can enjoy French wines, indigenous cheeses and chocolate truffles. This exclusive event will be limited to 50 guests, and reservations are required no later than February 8. Learn more about this event here.

A piano playathon will kick off at 1 p.m. on Sunday, February 28 at Ruggero Piano in Raleigh. The piano will be going all afternoon! Stop by at your convenience to enjoy the music, light refreshments and coffee. Admission is free, but donations are encouraged. To learn more, click here.

Taylor's Tale on Twitter

2010-01-24T16:52:00.002-05:00

Taylor's Tale is now on Twitter! Follow us to get real-time updates on the search for a cure for Batten disease and how you can get involved. Check us out here.

Holding on to Hope

2010-01-24T12:52:00.004-05:00

Check out this article on Noah and Laine VanHoutan, a brother and sister pair from the suburban Chicago area who are fighting late infantile Batten disease.

You can cast your vote for the VanHoutan's video on the Extraordinary Measures movie Web site's Inspirational Quilt. Click here to visit the Quilt, then type 'noah' in the search box. You can vote everyday! The winning video will win $10,000 to support crucial research.

E-Newsletter

2010-01-21T21:32:00.002-05:00

Don't forget to sign up for our e-newsletter if you haven't already! The winter issue will hit inboxes next week. Sign up to receive the newsletter via email or read the first issue here.

Extraordinary Measures

2010-01-16T19:39:00.003-05:00

Shortly after Taylor was diagnosed with Batten disease in the summer of '06, my mom bought a box full of copies of The Cure, the bestselling book about John Crowley and his fight to save his children from a fatal disease. She gave copies of the book to friends and asked them to fight with her. And from that simple act, Taylor's Tale was born.

Now, the Crowleys' amazing story will be told on the big screen. Extraordinary Measures, starring Harrison Ford, Brendan Fraser and Keri Russell, opens on Friday, January 22. If you've supported Taylor's Tale and/or followed our story over the past 3 1/2 years, please consider going to see the movie with friends and using it to help share the story of our own journey and fight for a cure for Batten disease.

You can also help support Batten disease research by visiting the movie's Web site and casting a vote in support of a video posted by another family who has two children fighting the disease. Click here to visit the Inspirational Quilt and type 'noah' in the search box to watch the video. You can vote every day! Thanks in advance for supporting this special family and the quest they share with Taylor's Tale and our family to find a cure for Batten disease.

For Daniel

2010-01-12T23:32:00.005-05:00

There is a special place in my heart reserved for a little boy I have never met.

Daniel Kerner is fighting late infantile Batten disease; tomorrow, he will turn 10 years old. His family and closest friends will celebrate this miracle over cake and ice cream more than 3,000 miles away from my hometown.

Daniel is an adventurer. He loves to be outdoors - to feel the sun on his face and the wind in his hair. He loves to take walks and visit the ocean. For the past four years, he has celebrated his birthday by tucking into an adaptive bi-ski and skiing with his family. Always the warmest person on the mountain in his warming packs, goose down and assorted equipment and clothing, Daniel loves to fly down the slopes.

Tomorrow, Daniel will not make the trip to nearby Mammoth Mountain; instead, he and his family and friends will celebrate at home. His mom, Joanna, says "there is a run that is very special for Daniel. It starts below the Cornice and drops down into the bowls and crests at the top of Saint Anton."

Tomorrow, you can make a run for Daniel. If you happen to find yourself at the top of Saint Anton, take in the crisp air and the sky and the snowy landscape around you, and remember that Daniel once skied there on his birthday. Most of you will not be near Mammoth tomorrow, though, so I'd like to ask you instead to make time for something that is special to you. It could be skiing down your own favorite run, jogging beneath the clear blue sky, reading a book, playing music or watching a movie with someone you love. No matter what is closest to your heart, make a place for it on January 13, and do it in honor of Daniel. Remember that each day is a gift.

2010-01-03T22:44:00.000-05:00

The winter edition of Believe, the Taylor's Tale e-newsletter, is scheduled to go out in less than a month. If you aren't on our mailing list, visit our Web site to sign up and receive the latest news! The winter edition will have the first in a new series of stories about real children who are fighting Batten disease.

2010

2009-12-31T17:27:00.000-05:00

A lot has happened in 2009. I think back now to one year ago today, to how much the prospect of 2009 scared me. Much of what I feared has come true. My sister's disease has continued to march on; the signs of progression are more evident with each passing day that we don't have a cure. Much of what I looked forward to, though, also came true. We had good days. We funded research. Research moved forward. After every hard rain, the clouds parted, and the light of the sun washed over us.

2010 scares me more than 2009 did in many ways, but that doesn't mean that I've ever stopped believing. I have no doubt that we will have more bad days next year. Despite that fact, I have no doubt that great things will also happen. Incredible progress will be made. Our faith in miracles will be renewed again and again. And one day - in 2010 or in the years soon to follow, I will use this very space to tell you that we have won.

Thank you for supporting Taylor's Tale in 2009. Stick with us awhile longer - we have more of the story to tell. Here's to a promising 2010. Happy New Year!

The Bell Still Rings for Me

2009-12-24T22:31:00.005-05:00

I'm spending the last fleeting minutes of Christmas Eve here on the couch with my parents, my grandmother and T; the Polar Express movie has just ended. As much as I loved the book growing up (the copy Mom read to T tonight has my name and home phone number scrawled on the inside front cover), I haven't read it in years. Sitting here tonight, though, the last few words of Chris Van Allsburg's story touched me in a way they hadn't before.

"At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I've grown old, the bell still rings for me as it does for all who truly believe."

The Polar Express is about much more than a man in a fuzzy red suit who makes a living jumping down chimneys one night a year. It's about believing in the unbelievable. It's about the journey all of us take at least once - as children or adults; in the context of Santa Claus, or religion, or a relationship with someone we love.

I have been on that journey for three and a half years in the context of my sister's illness. After T's diagnosis, it was a long time before I stopped being angry at God. I am no longer angry; I just plead with Him everyday. After that fateful day, it was a long time before I could bring myself to believe that T has a shot. In the end, my decision to believe was more a survival tactic than anything. I couldn't get out of bed in the morning if I thought our story's ending was preordained.

Unlike the boy in The Polar Express, I don't know where our train is going - and I take comfort in that. The unknown is better than a guaranteed bad ending. I know that Batten disease is - thus far - universally fatal. I know that if T were to survive it, I would call it a miracle. But that's the beauty of faith. No one has ever beaten Batten disease. But the strong half of me believes in that which I have never seen. And though I do not know our train's final destination, I know that it is going forward, not backward. I know that it is moving much faster than it was a few short years ago. I know that if I quit, she will lose. And I know that for as long as I believe, the bell will ring for me.

Merry Christmas!

.1 to Go

2009-12-14T22:32:00.010-05:00

In July 2007, one year after T's diagnosis, I began training for my first marathon, which I planned to run in her honor. That September, I set a new personal record for distance with a 17-mile training run. Two weeks later, I pulled out of December's Thunder Road Marathon with a foot injury.

One year later, I took it down a notch and registered for the half marathon. A series of family crises that fall affected my training; a month before the race, another injury led me to pull out of the half. On the morning of the Thunder Road events, I instead started the Jingle Jog 5K with my sister and her Girls on the Run team. 20-odd minutes later, I arrived at the finish line; 30 minutes after that, a triumphant Taylor crossed the finish line carrying the Fletcher School team sign with her coach, a few teammates and her running buddy, Mary-Kate.

This year, I again registered for the half marathon, but nagging pain in both feet, chronically weak ankles and a hectic autumn prevented me from training the way I would have liked. This time, though, I was determined to stay the course, even when a podiatrist plainly told me the morning prior to the race that my feet and ankles were a train wreck, and he didn't want to tell me not to run, but...And so it was that I found myself giddy in the crowd of 9,000 runners at 7:50 a.m. this past Saturday.

I started out at a moderate pace, as I always do. God didn't build me like a long-distance runner - I'm a more natural sprinter - and I have to constantly remind myself to conserve energy. After the first few miles, though, my happy little endorphins took over, and I coasted for awhile. Then, at around mile 5, the pain set in - throbbing pain and a fire burning in the balls of my feet (which take constant punishment, as I run on my toes) and tightness in my arches. By mile 8, I was the runner the onlookers lining the streets of Charlotte had to encourage to grind it out.

At mile 12, I split off from the marathoners to run the last 1.1 miles of the half course. It helped me to think about that last mile in terms of laps around a track. I told myself I only had four laps to go - easy. After what felt like two laps, my eyes began searching in vain for Martin Luther King, Jr. Blvd., where I knew the race ended.

The mile 13 marker was within sight when I first considered walking. Then, I remember, a woman - no, an angel - standing on the sidewalk told me, "Once you turn the corner, you'll be able to see the finish line." And at that very moment, I remembered what Mary-Kate, Taylor's running buddy, had said to me one year prior at the Jingle Jog finish line. When my blind sister fell and scraped her knees on the city streets, Mary-Kate told me, she asked her if she wanted to walk for a bit. Taylor, though, just shook her head, pulled herself up off the ground and started to run again. She didn't set any records that day, but when my sister crossed the finish line, she was running - just as she was at the completion of the Girls on the Run 5K this past May.

As those visions of Taylor running flickered through my mind, I turned that corner and, just as the woman had said I would, I saw the white banner stretched out above the finish line.

Even as my body begged me to stop, I shook off its pleas and, feeling Taylor's courageous spirit coursing through me, I sprinted the last .1 mile to the finish.

Like T that day at the Jingle Jog, I didn't set any records in the running of my first half marathon - my fourth road race ever and, by eight miles, the longest. But that feeling I got over the past .1 mile was something I'll have for the rest of my life.

T's Angel

2009-12-09T21:28:00.005-05:00

My seven-year-old cousin, Morgan, is making her second appearance on my blog tonight. After a weekend at my aunt and uncle's lake house in July, I posted the following:

And later, after we'd climbed the 90 steps from the dock back to the house for the evening, I watched as our cousin, Morgan, played the role of T's angel. Morgan celebrated her seventh birthday on Sunday and is nearly four years T's junior but was as good with T as any adult I've ever seen. Not once did she ever seem to be phased by my sister's blindness. Her compassion and acceptance were gifts of the greatest value.

Tonight, my aunt Holly told me a story that gave me goosebumps. Morgan and her younger sister, Madi, have never heard of Batten disease. They only know that their cousin, Taylor, is blind.

Morgan's second grade teacher called Holly this afternoon. All of the kids posted their "wish" for 2010 on the school's second grade hallway. The teacher explained that while 75% of the kids wished for a new dog, or a new Wii game, etc., Morgan wished for her cousin Taylor to see again.

No words of mine could top that.

Help Us Believe this Holiday Season

2009-12-08T22:27:00.004-05:00

I just returned home to the east coast after five days in northern California to discover that Christmas is less than three weeks away. I'm a little behind, as I haven't begun shopping for my family and friends. And as for me? I'm a little old to be making lists, and the last time I checked, Santa Claus does not follow my blog (unless he does so anonymously). Anyway, I only want one thing this holiday season, and if you're reading these words, you can help - even if you don't wear a fuzzy red suit and make a hobby out of climbing down chimneys one night a year. The one gift on my list is the same gift I've been asking for every night since July 24, 2006 - the day Taylor was diagnosed with Batten disease.

I want to find a cure for this rotten illness. I want to save my sister.

You can give the best gift of all - the gift of hope - by making a donation to Taylor's Tale. I'm happy to report that you can even do your shopping online; our new Web site, launched earlier this year, offers secure donations via PayPal. Click here to make a gift now. Because we're a 501(c)(3) nonprofit, all gifts to our organization are tax-deductible, and every gift made to Taylor's Tale supports promising Batten disease research.

Taylor is at Duke this week for a series of tests while most of her friends are likely making their own wish lists and counting down the days till winter break. I sent my mom a quick email this afternoon to check on my sister. Her answer was short: "A trooper as always." And that she is. I think about how much my sister has lost. No words of mine can describe what has been taken from her. And yet, all she's asked me for this Christmas is a set of drums - my sister, the aspiring musician. I can find her a nice set of drums, but I want to give her more. She may not see it quite the way I do, but Taylor is an aspiring adult. How often do we, as actual adults, stop to consider how very blessed we are simply to have reached adulthood - to be alive and, more often than not, well? My sister, and a lot of other children like her, have never had that luxury. But in spite of all that has been taken from them, those aspiring adults are - and always have been - inspiring children. The most noble thing we can do as actual adults is help give them a shot.

What I'm Thankful For

2009-11-26T12:04:00.003-05:00

Happy Thanksgiving to all! I have a few minutes of downtime before we head over to my in-laws' for three of my favorite things: food, football and fellowship. This morning, I ran in my second straight Turkey Trot 8K to kick off the holiday season and relieve myself of some of the guilt I'd otherwise feel later today. As I trotted 4.96 miles with 6,000 other runners on the SouthPark streets, I had some time to think about what I'm thankful for today:

the walkers (5K) and runners (8K) who sported their Taylor's Tale t-shirts and logged miles this morning in support of our mission - including Sharon King, John Edwards, Debbie Carney, Joanna Ashworth, the Hines family, Sally and Ward Davis and Alyson Wheelahan.
the opportunity to spend time with my family this past Sunday and my husband's family today.
the health of those of my loved ones who are healthy and the power of hope for those of my loved ones who are not.
Carolina basketball.
my love for football and its ability to help me enjoy watching the Panthers play - even this season.
a good job and a nice house - isn't that the American Dream?
my friends who have stuck with me even on my darkest days; when I cannot walk, they carry me.
tears. Sometimes, they are necessary.
a bookshelf full of tales by others waiting to be read and a blank screen on which to write my own.
my brother. Stephen - growing up, I never thought in a million years that we would become so close. I am so proud of you.
Nintendo Wii. It has an uncanny ability to help me feel like a kid again - which is a good thing.
music. Words are the language of our hearts; music is the language of our soul.
a still-young marriage that has withstood family tragedy after family tragedy.
my dog. There's nothing like a snuggle session with a furry, cuddly animal who loves you after you've had a bad day.
the sunrise.
the sunset.
the ocean. Though I don't get to see it as much as I'd like, when I do, it has a powerful and lasting effect on me.
the mountains. Just last weekend, I left Charlotte behind to hike among towering trees, rushing waterfalls and autumn-draped trails. There is a whole world out there to enjoy - the playground God gave us.
the opportunity to take my sister to the Miley Cyrus concert on Tuesday night. The progression of the disease is overwhelming these days, but she still smiled and clapped her hands and recognized her favorite songs. Which leads me to...
laughter and smiles. Even if the feeling I have inside doesn't always match, I still try to laugh and smile - like T would.
talented scientists who devote even a part of their days to finding a cure for Batten disease.
all those who helped make Taylor's Tale possible - and all those whose gifts have helped us contribute to historic research.
rainbows.
memories. If my house burned down and I lost all the material things I own, I would still have my memories.
the future. Tomorrow is another day. The path before us is unknown, but our faith - if we can keep it - will light the way.
the word "believe."

Be thankful for this day. It is a gift.

What Inspires You?

2009-11-19T21:13:00.005-05:00

What inspires you?

For me, it's seeing people come out in droves to help us achieve our mission, like they did at Fat Daddy's Bar & Grill in Raleigh on Tuesday night. It's spending every day in the trenches with people like my friend Katie, who organized the event and believes with all of her heart, like I do, that our dream is within reach. But more than anything, it's watching my sister Taylor. Taylor makes the ordinary amazing. She is the fuel for my fire; my laughter and my tears; my heart and soul.

Click here to read a beautiful article about why Taylor's never-give-up attitude has sparked a huge effort to find a cure for the disease that threatens to take her life. Thanks so much to Mary Kornegay for telling the story so well.

Taylor - we're right here with you, sweetie. We're sticking in the trenches till this disease doesn't have a leg left to stand on.

Turkey Trot is Almost Full!

2009-11-17T12:51:00.003-05:00

The Charlotte Turkey Trot features a great course and is a hugely popular race, year after year. Word has it that registration for this year's event is about to be closed. If you're planning on joining Taylor's Tale for the 8K run or 5K walk and have not registered, please do so ASAP! You can register online at http://www.charlotteturkeytrot.com/. Don't be a turkey - reserve your spot now to trot in honor of kids with Batten disease on Thanksgiving Day.

p.s. just as a reminder - we have t-shirts for anyone taking part in the day's festivities. Send me an email at laura@taylorstale.com with your size and the best way to catch up with you between now and Thanksgiving!

Wine Around the World: Italy

2009-11-16T21:09:00.003-05:00

Many thanks to everyone who joined us at Terra Restaurant for the Italian edition of Wine Around the World for Taylor yesterday. We had a great evening with our guest vintner, Federico Orsi, and restaurateur Thierry Garconnet and his staff. Thanks also to our hostesses - Stacy Jesso, Anne Pipkin, Amy Romeo, Martha Schmitt, Amy Tribble and Linda Weisbruch.

Stay tuned for details about the French and Australian Wine Around the World events! Use your passport or purchase a single-event border pass for just $35. For more details, click here.

Learning to Dance in the Rain

2009-11-10T23:58:00.005-05:00

My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando; this was just months after Taylor was diagnosed with infantile NCL in July 2006. Being like-minded fighters fighting the same fight, they've stayed in touch ever since.

Fast-forward two and a half years to an evening in early July of this year. My mom had not made plans to attend the BDSRA conference - the annual meeting during which families of affected children get together to support one another and research grants are announced. On this evening, though, Mom had Winnipeg on the line. Doug Smith urged her to attend the conference, telling her that the work of Taylor's Tale had helped give hope to children like his son. Not long after that night, Mom boarded a plane for St. Louis, where she would witness the awarding of four more grants for INCL research. Another year of hope.

Just a few short weeks ago, Mom got another call from the Smiths. This time, Brandon had taken a sharp turn for the worse.

Brandon passed away in his parents' arms on Sunday, November 1. He was eight years old. When I found out that Wednesday, I cried in my office.

In spite of the miles that separate us, Brandon and his family feel like old friends. We share the same fight. And Brandon, like Taylor - like all of these kids - was a fighter. Batten disease is tragic; after the diagnosis, there's never an easy day. But Taylor always reminds me how to smile, just as Brandon did for his family and all those who knew him. In the words of his mom, Cindy, "He taught us to dance in the rain. Life is not waiting for the storm to pass. It's learning to dance in the rain."

Brandon fought till the very end, and I will, too. I fight in honor of his great courage and to bring hope to the children we can still save. We couldn't do it quickly enough for Brandon, but we're close. Let his story inspire all of us to keep dancing in the rain.

Click on the links below to read two beautiful articles about Brandon and his family's fight.

http://www.winnipegfreepress.com/local/family-refuses-to-live-life-under-cloud-57534977.html

http://www.winnipegfreepress.com/local/the-spirit-of-kid-courageous-inspired-many-68833267.html

Fat Daddy's Charity Night

2009-11-07T16:16:00.003-05:00

Just a reminder that Fat Daddy's Bar & Grill of Raleigh, N.C. will host a charity night to benefit Taylor's Tale on Tuesday, November 17 from 5-11 p.m. If you live in the Triangle area and can make it out to Fat Daddy's that evening, you'll be supporting the three research projects Taylor's Tale helped make possible for 2009-2010. Just mention Taylor's Tale when you place your order, and the restaurant will donate 10% of the proceeds from your purchase to our organization.

Fat Daddy's is a local favorite in the Crabtree Valley area of Raleigh, located at 6201 Glenwood Ave. The restaurant offers everything from custom-built burgers to pool tables and a huge beer selection.

For more information about this and other upcoming events, check out our Web site or Facebook page. Hope to see you soon!

Turkey Trot for Taylor

2009-11-04T21:42:00.003-05:00

Join us at the Charlotte SouthPark Turkey Trot on Thanksgiving morning for the 8K run, 5K walk or 1-mile fun run. Feel less guilty about eating a big meal later that day and help us spread the word about Batten disease. Email me at laura@taylorstale.com if you plan to run/walk in honor of children like Taylor (who happens to have two 5Ks to her credit!). Include your t-shirt size in your email - we want everyone to wear a Taylor's Tale t-shirt!

For more information about the race events or to register, visit www.charlotteturkeytrot.com. Hope to see you there!

A Season of Change

2009-11-01T22:41:00.005-05:00

The red and gold hues of fall have become the dominant color in the Charlotte landscape in the few weeks I've been back home from our adventure out west. The nights have grown cooler, and the days have grown shorter. Last weekend, we headed up to Carrigan Farms north of town for a hayride and pumpkins straight from the pumpkin patch. And yesterday marked one of the most exciting days of the year for Taylor.

Halloween rivals Christmas for the title of "T's Favorite Holiday," and she never takes it lightly. The "Is it time to put on my costume?" questions started early yesterday morning and didn't end until the answer transitioned to "yes." She was a queen bee - an identify of her own creation and my favorite costume yet. She came bounding down the steps around 5:30 in her yellow and black striped tights, gold Mardi Gras beads, black leotard, glittery wings and fuzzy antennae that bounced with each step she took. Even the pouring rain wasn't able to dampen her spirits, and we squeezed every last drop out of the 30-minute break in the rain to take her from door to door.

After Halloween, the rest of the year is a blur. Thanksgiving will be here in three weeks, and the malls will be decorated for Christmas shortly if not already. And then, before we know it, 2009 will be only a memory.

Soon it will be four years since our first fundraiser, and though research is in an infinitely better place than it was four years ago, the disease continues to haunt us where it hits hardest - at home. Despite her straight As and bright smiles and a spirit that even a trick-or-treat-trashing rain can't touch, the disease is within her more than ever before. The brilliant autumn reds and golds - colors she can no longer see - mark yet another season of change.

Three years ago, I wondered if T's strained night vision would keep her from trick-or-treating. Her vision has left her now, though - and it is the least of my worries. How much longer, I wonder, will she be able to walk the neighborhood streets and ring doorbells of her own power?

The leaves are falling in earnest now, and soon only bare branches will grace the backdrop of endless sky. And after the last leaf has fallen, and the nights have turned bitter cold, I will be left only with the one word that has carried me through these haunted years: BELIEVE.

Eat Chicken for a Cure Next Week!

2009-10-20T22:00:00.004-04:00

Don't forget to come out and support Taylor's Tale at the Cotswold Chick-Fil-A next Tuesday, October 27 from 5:30-8:30 p.m.! Mention Taylor's Tale when you place your order, and Chick-Fil-A will donate 15% of the proceeds from your purchase to our organization.

Proceeds from the Chick-Fil-A Charity Night will support the exciting Batten disease research projects Taylor's Tale is supporting in 2009-2010; click here for more details.

The Cotswold Chick-Fil-A is located at 4431 Randolph Road in Charlotte.