Notes from Germany

By Laura Edwards

Mom is in Hamburg, Germany to represent Taylor’s Tale at the 12th International Congress on Neuronal Ceroid Lipofuscinoses (NCL). Each day through June 6, check out my blog for updates from this gathering of the world’s top Batten disease experts – those who represent our greatest hope for preserving the dreams of children like Taylor.

Mom didn’t make it to the University today after her longer-than-expected journey over the Atlantic. After flying the first leg to Dulles in Washington, DC, she watched through the window as Air Force One headed down the runway en route to the Middle East. Her own flight was late getting into London, and when she finally touched down in Hamburg, she traveled to her hotel without her luggage, which opted for a longer layover in London and still had not made it to Germany when I last heard from her. Chilly weather greeted Mom – people dressed in jackets and turtlenecks, and no one wore strappy sandals like those that hit the streets in Charlotte well over a month ago.
We’re about seven hours behind Hamburg, but I’ll make an effort to post updates as quickly as possible throughout the duration of the conference. Mom’s alarm should be going off shortly – the first session starts in a few short hours, and you’d better believe she’ll be there.

Woo Hoo!

By Laura Edwards

Taylor and Mom just returned from Duke Hospital in Durham, where T underwent various tests for her new neurologist (including her third MRI since January and more neuropsychiatric testing). After two long days during which a chatty T’s only complaint stemmed from the “gook” they put in her hair for the EEG, she exited the front of the hospital and let out a big “Woo hoo!” ‘She was finished, tired, but still smiling…my role model,’ Mom wrote in her CaringBridge journal.

For our second wedding anniversary last summer, John and I traveled to the Outer Banks of North Carolina. During our second leg of the trip on the northern end of the barrier islands, we visited Jockey’s Ridge State Park. It was my first time back in the park since the summer I was 12. On that particular July day long ago, the temperature approached one hundred degrees, and the humidity and blinding white sand made it feel hotter. No matter – I promptly removed my sandals and sprinted to the top of the largest natural sand dune on the East Coast only to then collapse to my knees. My feet sank into the sand, so hot it burned like icy needles on my bare skin. I became too dizzy to stand. My uncle David, who was only 25 and in med school at the time, scooped me up into his arms and carried me down to the entrance of the park, where he literally dumped me under a spigot and turned the water on full blast (I think partially to relieve my symptoms and partially to punish me for my stupidity).

Fourteen years smarter and not quite as deep into the North Carolina summer, I had no close calls with heat exhaustion the second time around. John and I ran, alright – but downhill. Jockey’s Ridge is so vast that it seems like a mountain range rather than a single continuous dune, and we made it our mission to find the steepest inclines, walk to the crest, clasp hands and run back down as fast as we could. Anyone who saw us do this repeatedly probably thought we were crazy. To strengthen their case, I cried out a jubilant “Weeeeeeeeeeee!” on each downhill flight. I felt like I was 12 again, only this time I wasn’t miserable. In fact, in those moments, I felt happier than I had in a long time. I felt unfettered. Alive.
Here and there, I’ll forget how that feels. I couldn’t bring Jockey’s Ridge back to Charlotte with me, so I run. Yesterday we got a short reprieve from the rain, so I hit the pavement after work. I ran to the pond in our neighborhood and did laps on the obstacle course of a path, dodging rain puddles and muddy patches and the family of ducks who, like me, was glad to have a break from the rain and had come out to play. Though nothing fell from the sky at the time, the humidity was palpable. Everything is so green right now from all the rain, and for a time I forgot I was in Charlotte and instead found myself elsewhere (the Everglades came to mind, which might be why I didn’t run for as long as I normally do). Running does that for me. All I have to do is block out the house overlooking the pond with the pool and the fake palm trees and the tiki torches in the backyard, and I can be anywhere. And on my run last night, as I crossed the bridge and made my last turn for home, I let out a “Weeeeeeeeeeee!”
I may forget what that feels like from time to time (alright, more often than not these days), but I’m not sure that T ever does. T isn’t always happy – sometimes she’s sad (and who could blame her?), but I don’t think she ever forgets. She can make the best of any situation and turn it around so that even though she had to miss two days of school and travel close to three hours to a strange hospital to be poked and prodded and questioned and recorded for two days, the worst part was that they had to put “gook” in her hair for the EEG. And Mom, who knows her youngest daughter all too well, had expected as much and requested a late checkout at the hotel so T could wash her hair before hitting the road again. And so for T, another bout was over, and everything was cool, and “Woo Hoo!” was the word of the day. And that, I say, should be the word of all our days. Because no matter how bad things get, there’s always a huge sand dune and after-rain runs and fruity shampoo to wash the day away.

We Need Your Words

By Laura Edwards

Taylor’s Tale has a brand new website! Check it out here.

When our original site launched in January 2007, I was still relatively new to the world of Batten disease. We had never had a fundraiser. Our new steering committee had met only once.  My family had never publicly spoken about Taylor’s illness. Though her eyes had already begun to fail her, Taylor still had days when she could see.
In those early days, I didn’t have a firm grasp of our situation or any grand ideas for beating the odds. In fact, there were only two things of which I was completely certain:
1) My sister was born with a fatal disease.
2) To have a chance to save her life, we had to tell her story. So that’s what I’ve tried to do.

Taylor’s Tale, the organization, began on February 9, 2007, the evening of Chapter One, when my family and I stood surrounded by 160-odd friends and spoke candidly about the cards we were dealt and how we were going to play them. Taylor’s Tale, the story, began the day my little sister was born in 1998. And since the ink dried on the pages of Chapter One, Taylor’s Tale has been a story written by committee. The words for a story like T’s can’t be found in the mind or the heart of just one. The happy ending will require your words as well as mine.
So, take a look at the new site. Read our story for the first time or get reacquainted with T and our efforts to save her life and the lives of others like her. Find out how you can help write the next chapter of Taylor’s Tale. There are so many who, like T, need our support to see their dreams come true.

Chalk Letters

By Laura Edwards

This morning, flanked by two angels, Taylor completed the Girls on the Run 5K 12 minutes faster than she reached the finish line of the Jingle Jog 5K in December. 
On the last lap around picturesque Latta Park, we came across the word “Believe” written in big chalk letters that stretched across the pavement. Believe – that’s the gift T gives us each and every day.
“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” –-Hubert Humphrey

The T Zone

By Laura Edwards

This Saturday, Taylor will run in her second 5K when she joins her Girls on the Run teammates at Charlotte’s Latta Park for the culmination of their spring program.

The expression on T’s face as she crossed the finish line of the Jingle Jog 5K this past December with her running buddy, Mary-Kate, is still fresh in my memory. The bungee cord that connected them was T’s lifeline that day. For me, it symbolized hope: proof that nothing – even a disability like T’s – is cause enough for giving up on a dream.
T has a lot of fans, and while I know you’ll all be there in spirit on Saturday, she needs some of you there in person. The Packers have the Cheeseheads. Duke has the Cameron Crazies. Michigan State has the Izzone. If you’re in Charlotte this weekend, please consider coming out to Latta Park and forming a cheering section for T – call it the T-Zone. Then, watch her finish the race. When she crosses that line, you’ll understand the magic that is her story. And it’s not just her story, not really. Rather, it’s the story of any girl who’s ever overcome an obstacle, discovered her own gifts and embraced them.
The race starts at 9 a.m. on Saturday at Latta Park in the Dilworth neighborhood. Click here for details.
Go, T, go!

The In Crowd

By Laura Edwards

We spent an awesome couple of days this past weekend at the new Great Wolf Lodge in Concord, just north of Charlotte. Thank you to the angels who made it possible for Taylor to make happy memories with her family at the resort.

The weekend marked the Great Wolf Lodge’s official grand opening celebration, complete with a Radio Disney banquet and intimate concert with Disney star Mitchel Musso of Hannah Montana fame in the lobby on Friday night. When the music started, most everyone else got up on their feet, but T remained seated on the floor. Every time I squatted down to talk to her during the show, she was lost – no – found – in her own private, happy little world of music. She chanted when the crowd chanted and clapped when they clapped and cheered when they cheered, but she experienced that hour in her own special way.

One of the songs Musso and his band performed was called “The In Crowd.” As the lyrics blared from the speakers stacked not more than two feet from where we stood and I took in the gobs of preteens and tweens and teens oogling the band members, I thought about how hard it must be for a girl T’s age to endure everything she has endured, from getting a rotten diagnosis to taking yucky meds to struggling with some subjects in school to going blind to traveling thousands of miles to have major (and experimental) brain surgery, losing her beautiful head of long blonde hair in the process. I think back to when I was in the fifth grade, like T, and remember how it was the year when it seemed as though an invisible switch was flipped, and the girls started puberty, had their first real crushes on boys and suddenly cared deeply about not so much what clothes they wore to school, but rather what others thought of them, and how all of those physical and social and emotional changes triggered what I call the ‘mean girls’ syndrome. I think, in one single moment, how compassionate people are and how cruel they can act. And then, I remember how T has faced each day – every wound, every setback, every laugh and every moment of great hope – with more grace and courage than I could ever dream of finding within myself. We have created such a complex system for how people are judged socially, and for what? We spend so much time examining other people for their faults that we often look right past their gifts.

The song served as a stark reminder of one of the many kinds of pain T has felt in her short life, but it was also a reminder of what makes her so special. Yes, she has Batten disease – but she’s also a 10-year-old girl who makes a note of Disney movie and CD release dates and who didn’t want to wash her hand after Mitchel Musso held it when it was her turn at the autograph session. She’s a girl who wants so badly just to be normal but who also isn’t afraid to walk – or dance – to her own beat.  And the moments we shared at the lodge – whether during the concert or on the slides at the indoor water park or on the mini golf course or in the arcade during our heated games of Skeeball and basketball and air hockey, were filled with her laughs and her smiles – and that, to me, is the grandest gift of all.

Light Years and Stars in the Sky

By Laura Edwards

I just came across a headline on the Web announcing that scientists have discovered a “nearly Earth-sized planet” some 20 light years away, dubbed Gliese 581 e. Though it was immediately discounted as a habitable world due to its proximity to the nearest star, Gliese 581 e gave scientists who study the universe renewed confidence in the idea that we really might not be all alone, after all.

Reading the article made me remember a night I shared with my dad when I was around 9 years old – younger than Taylor is today.
For about five years, we were Snowflake and Running Wolf, part of the Miwok tribe in the YMCA’s Indian Guides program. My favorite memories are of the weekends we spent at Camp Thunderbird, just over the state line in South Carolina, and Camp Cheerio, nestled in the rolling mountains of western North Carolina. This particular moment took place one crisp fall evening at Camp Cheerio, in a field just beyond the rec hall where all of the other girls and their dads were watching an animated movie on a big projector screen.
That fall, I was the oldest girl in my tribe and on the verge of aging out of the program, and I stuck my head into the rec hall just long enough to determine that the movie selection for the night was too childish for me. That was just fine by Dad, and he suggested we go out to the field and count stars instead. For the first time in the 17-plus years since that night, I can feel the soil and the grass under my back and the light breeze that danced across our faces and the brim of the too-large baseball cap that held my long hair back out of my eyes. I can see the peppering of solitary stars and the Milky Way spray-painted across the black night sky.
Just as anyone who’s ever gazed up at the stars and let their imagination run free, Dad and I talked about the remote worlds suspended above us and the possibility of life – intelligent beings, even – populating them. And though we had no telescope large enough to gaze upon their oceans and mountains and civilizations – and though we had no camera advanced enough to even capture the magic of the stars as they appeared over the camp that night – we had no reason not to believe that those worlds could exist. And so, though my back remained snugly against the earth for the hour or so that we spent in the field, my memory of the moment was preserved all these years not by the smell of the slightly damp grass or the slight chill in the air or the faint voices drifting from the rec hall into the still evening beyond, but by the worlds to which we traveled in our minds and the excitement we felt in our hearts when we arrived there.
Nearly 18 years later, we are still searching for extraterrestrial life, though the telescopes are much larger and the cameras much more advanced than those that represented the very best in 1991. And all these years later, we are still searching for a cure to the disease that was first observed in four child siblings in a small mining community in Norway in 1826. But like the progress being made by scientists with NASA and other research teams, such as the Geneva University (Switzerland) group that discovered Gliese 581 e, amazing advancements are being made right now in the study of all of the various disorders that make up neuronal ceroid lipofuscinosis. As part of a family that has been deeply affected by Batten disease, I am always searching for answers. And whether they are to be found by the medical community’s equivalent of a super telescope or in the most unexpected way – perhaps by a chance sighting of a comet as it streaks across the sky – they WILL be found, and in the thirty-three months that I’ve been in THIS field, this field of Batten disease, I’ve seen more stars than I could have ever imagined in the earliest days of our knowledge of Taylor’s plight. And if we could come to be more familiar with those stars, as I believe we are so close to doing, then – and only then – would I realize my greatest dream of all – one not of life like ours on other worlds, but of a life for children like Taylor in THIS world.

A Jibbit Never Forgets

By Laura Edwards

John and I are in the midst of a construction project at home and have spent the past couple of nights working with a movie on in the background. Last night, we watched Rain Man, the 1988 movie in which Dustin Hoffman plays a savant. Afterward, we had a lengthy discussion about autism and the mechanics of the human brain, albeit at 2 a.m. Then, strangely, when we turned on the TV to begin working again tonight, we immediately came across a show on the Science Channel titled “Brain Man” that focused on Daniel, a savant in his twenties who sees numbers as distinct figures and shapes in his mind and who, unlike Hoffman’s character in the movie, can communicate freely about his unique way of thinking and processing information. During the program, Daniel met the real Rain Man – the man who originally inspired the story.

The show closed with a rhetorical question about the true nature of intelligence – a question I’ve considered before. I continued to think about it after the broadcast had switched to a program about body clocks (that one’s still on in the background as I write this – and even as I ponder the nature of the human brain, I wonder what it is about my body clock that leads me to get into deep discussions at 2 a.m. but hit the snooze button twenty-seven times every weekday morning).

The reason it’s a rhetorical question is because there isn’t one singular, bulletproof definition of human intelligence. Academic success is probably the trait most often equated with intelligence, because it is achieved in a controlled setting and with the benefit of comparisons between students. But even “academic success” has to be qualified further. Can academic success be rigidly defined by 4.0 GPAs and high SAT scores?

Taylor learned to read when she was three. I won’t ever forget the day she read a book to me in the time that it took my dad to run into Papa John’s and pick up a pizza while we waited in the car. Her preschool teachers tried to teach T and her classmates to read by putting all of their names up on the wall. They had to try a different tactic after they realized T could read all of the names, and did – aloud. At that early age, she also excelled at recognizing figures and shapes. My first car was a Honda Accord. One day, as we drove by a Honda dealership, my toddler sister pointed out the window at the dealership sign and said, “Rar Rar’s car!”

But it wasn’t long after we discovered T’s potential that we also uncovered her struggles. Math was so frustrating for her that even my mom, who pushed me to excel beginning as early as I can remember, was at a loss. I remember the day we sat in Starbucks and tried to tackle T’s math homework. She was in the first grade, and her class was learning about money. Using the cutout shapes from her math workbook, we desperately tried to explain why two dimes and a nickel equal a quarter and five pennies equal a nickel. When we finally noticed the tears in her eyes, we stopped. To this day, my sister struggles with simple math.

While T will likely never be an engineer or an accountant, she is supremely gifted. She has learned the Braille alphabet in less time than it takes many children to learn the conventional alphabet for the sighted. She uses an advanced form of sensory perception to survive without the gift of vision in our visual world, and she retains an incredible amount of information from movies, books and conversations.

My mom recently told me a story that only illustrated what I already knew about my sister’s memory. Mom got the Easter decorations and T’s Easter basket out of the attic a few weeks ago. After the two of them decorated the Easter tree, they decided to put some fake grass around the base of the tree. Mom went to take some grass from T’s Easter basket and found a dinosaur Jibbit (shoe charm) hiding in the grass from last Easter. Mom handed the dinosaur Jibbit to T, and she felt it for a minute. Then, she said, “But Mom, where is the ladybug?” Perplexed, Mom searched through the grass and, sure enough, found the ladybug Jibbit that, like the dinosaur, had spent the past year as a stowaway in the attic.

T has a neurodegenerative disease, and since her diagnosis, I have learned far more about the human brain than I ever cared to know. If I had one wish, I would eradicate Batten disease from the face of the earth so that no child has to suffer in the ways that T has, ever again. But even as I have despaired over her fate and wrung my hands and watched painful moments such as the one T endured in that Starbucks years ago, I have been so moved by her gifts, her intelligence and, above all, her determination and her ability to adapt in the face of unspeakable adversity, that I believe now, more than ever, that the world would experience a tremendous loss if we lost T.

The Road that Leads Us There

By Laura Edwards

Last night, UNC won the national title with what was, for me, the sweetest victory I’ve ever experienced as a sports fan. Now, if you happen to be a Michigan State fan, or if you’re just not particularly fond of my alma mater (it’s okay), I hope you’ll continue reading. This post is not about college basketball. Not really.

Last October, the Tar Heels celebrated the return of its six leading scorers, including the reigning national player of the year, from the ’07-’08 Final Four team. The squad was anointed as one of the best ever before its first practice. There was talk of an undefeated season and an easy run to the title.Then, amazingly, the invincible team from Chapel Hill slipped up. Tyler Hansbrough was diagnosed with a stress reaction in his shin and sat out a couple of games. Marcus Ginyard had foot surgery, tried coming back unsuccessfully and took a redshirt. Tyler Zeller broke his wrist. There was the 0-2 start in conference play. A mere two hours into the ACC season, at home against Boston College, the dream of an undefeated season vanished. And the Heels, by all appearances at least, were on their heels. Panic ensued in the hearts of Carolina fans everywhere.
Bit by bit, though, the team pulled it together. There was the detour late in the season at Maryland and the near-loss at Florida State (sans the late-game heroics of Ty Lawson, Florida State would have won) and the loss in the ACC tournament, albeit without the services of Lawson. But there was the sweep of arch rival Duke and the emergence of Wayne Ellington and the hustle of Bobby Frasor and the usual Everyman performance of Danny Green and the inside presence of Ed Davis and Deon Thompson and the workmanlike grit of Hansbrough. After that loss in the conference tournament, the Heels still earned a number one seed in the NCAAs, but most experts predicted that the champion would come out of the powerful Big East.
If you’re not a Carolina fan, and I haven’t lost you yet, I feel pretty good about keeping you till the end. And I still say this post isn’t about basketball. The point is, the team didn’t panic. They played for each other, they learned to play better defense, they ran a balanced attack, and they listened to their coach. They played for the seniors at their last dance and the underclassmen who came back for one more song. And though they didn’t take the most direct route, and though they encountered some twists and turns in the road along the way, in the end, they were still national champs.

Sports aren’t everything – not even close. But they’re a pretty good analogy for life more often than not, and the best part is, they occur in a strangely beautiful alternate world where hard fouls hurt and losses hurt even more, but none of it really matters in the end, relatively speaking anyway. I can’t ever walk away from the painful truth that my sister has a devastating illness – one that has permeated her life and mine and those of everyone who loves her and even some who don’t know her well enough to love her but have seen the fight in her. I’m not living my life the way I once imagined because of my twists and turns in the road. And in many respects, that’s okay. How often does life turn out just the way we imagined? And do we really want it that way, even if it was possible?

I don’t know what will happen tomorrow or the next day or the next. I don’t know when the cure for Batten disease will be discovered or if it will happen in time for my sister. I wish I could quit taking detours, but I can’t. This disease hasn’t done much good for me or anyone compared to the way it’s robbed her, and I’d like to think God has an easier way of teaching us lessons and will decide to go soft on me one of these days. But until He starts to show signs of letting up, I might as well listen up.
Those twists and turns in the road on the way to your destination are what make you who you are. How you live them – how you face them – is sometimes your best shot at reaching your desired destination, whether that’s a spot on the podium during One Shining Moment or a spot next to your little sister on her wedding day. No one ever told me this was going to be easy. But there’s one thing I know for sure, all on my own – and this only works for as long as I believe: once I get there, it’ll be that much sweeter for the pain I had to endure along the way.