The In Crowd

Published: April 30, 2009  ~   1
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

Published: April 22, 2009  ~   0
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

Published: April 13, 2009  ~   0
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

Published: April 8, 2009  ~   0
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.

The Little Things

Published: March 20, 2009  ~   0
By Laura Edwards

Taylor, Mom and I are on the South Carolina coast enjoying a few days’ respite.

I used to wonder if there were more Bargain Beachwears and cheesy Putt-Putts than grains of sand at this oceanic collection of high-rise condos and tourist traps. My grandfather loved this place because he was a golfer, and the Grand Strand is a golfer’s paradise. In a single day, you can play nine holes, eat lunch and dessert at Greg Norman’s restaurant, play the back nine and eat overpriced seafood at a different restaurant for dinner, no problem. My grandfather passed away one chilly weekend in early December when I was fifteen and playing in a soccer tournament in Athens, Georgia, but we still come down here. If we come by way of SC 9 (I call it “Back Road 9,” and not affectionately, either), we pass by Tony’s Restaurant, which serves great Italian fare and is not a chain like its neighbor, Carrabba’s. Granddaddy hated the smell of marinara sauce and wouldn’t have pizza or pasta in his house, even when my dad and his brothers and sister were growing up. But I love Italian, so every summer when we came down, Granddaddy would make a reservation for dinner at Tony’s one night. It was a little thing, but it made me feel special nonetheless.

We’ve been here almost 24 hours now, and the worries we left behind in Charlotte already feel a world away. We made it out to the beach late-morning and just sat watching the ocean with our toes in the cool sand for awhile. Then, we played catch until T announced that she was ready for lunch. She’s pretty good at catch – you just have to give her a heads up before you throw the ball and talk to her before she throws it back so she can locate you. When the girls went upstairs, I went for a run on my own. The people are more scattered this time of year, so the beach doesn’t resemble a mosh pit. I was able to find a good lane right above the water line, where the sand’s only slightly wet and not too soft, and after a few minutes, I turned off my iPod so I could listen to the waves and the occasional seagull. It was the most therapeutic run I’ve had in weeks.

Though I packed enough clothes to stay two weeks without ever doing a load of laundry, I forgot some key items – I always do – so after watching my Heels get a decisive win in the first round of the NCAA tournament sans ACC POY Ty Lawson (my mom, who doesn’t follow sports at all, now calls him “The Toe”), I decided to walk up to the CVS on the main road. Mom wanted to get a walk in, so we convinced T to tag along by promising that she could pick something out once we got there. We walked three abreast to the drugstore and perused the aisles, discussing the merits of Maybelline vs. L’Oreal mascara and ways to get my feet sandal-ready (soccer and running take a toll on my feet, which aren’t pretty to begin with). Meanwhile, T decided she needed a mirror for her purse and lip gloss. On the way home, we didn’t make it one block before T decided she just couldn’t wait to apply her new lip gloss, to which I pointed out to Mom that it was a good thing at least one of her girls turned out girly! The only thing I applied to my lips at age ten was Chapstick.

So here we are now, enjoying an excitement-free night in the condo. T’s retreated to her room to watch a DVD, Mom’s prepping for T’s upcoming school presentation on Helen Keller, and I’m glued to the TV for the night games (currently, I’m watching Clemson lose to Michigan). I realized a long time ago that I don’t need the kind of manufactured fun found in excess at North Myrtle Beach to, well, have fun. The last couple of years of our lives have only reinforced that.

I’ll always try to be honest here – so I’ll say that I live in constant fear of what tomorrow may bring (or rather, what Batten disease may bring tomorrow). So, just as countless others who, like me, dearly love someone who is facing a life-threatening disease, I have many things that I want to do with my sister, and I always feel as though I can’t do them quickly enough. My sister once said she wanted to go to Hawaii; I want to take her to Hawaii. She is a Disney fanatic; we took her to Disney World before she was diagnosed with Batten disease, when we still believed she was only losing her vision; she wants to see the Jonas Brothers on their world tour; I am disappointed that they are not coming to Charlotte. But what I have to remember – what all of us have to remember – is the joy we can extract from the simplest of activities, like our impromptu game of catch on the beach or our girls’ night at CVS. As much as I want T to have happy memories, I’m not convinced that we have to have countless so-called exciting adventures for that to be possible. I want her to remember the fun time we all shared at Disney World, but I also want her to remember – and I want to remember as well – the times we’ve spent snuggling on the couch or sharing an $11 cheese pizza, drinking Diet Cokes through straws and talking about boys and clothes, as we did when I took her on a “date” one night week before last. Even if we could afford all of the adventures, sometimes I just want to enjoy my sister’s presence without it being overshadowed by the experience or the landscape around us. My grandparents took me on an amazing trip to New York City when I was eight years old; we stayed in the Hilton, rode in a stretch limo all over Manhattan, went to fancy restaurants and museums and the World Trade Center and FAO Schwartz, but that trip is not what I remember most about my relationship with my Granddaddy Parks. No, what I remember the most is watching Winnie-the-Pooh together in the TV room just down the hall from where I sit now – and those dinners at Tony’s.

The Quilt

Published: February 22, 2009  ~   0
By Laura Edwards

Mom is back from San Diego; she arrived on the red eye this morning. I have many things to report from her journey out west and will do so in time. Tonight, though, I just want to share some reflections from her time with Daniel Kerner, who is nine years old and has late infantile NCL, and Daniel’s mother, Joanna. Together, Daniel and Taylor form the bookends of the historic clinical trial in Portland, OR. Daniel was number one; Taylor was the sixth and final participant. Joanna and my mom have talked with one another countless times across cyberspace and telephone wires, forever connected by their children’s at once great hope and great sacrifice that was their experience in Portland, but they had never met in person. Since the day I was first contacted by another family stricken by Batten disease, as ours is, I have struggled to put words to the relationship that is forged between us all, even if the road between us stretches thousands of miles, as in the case of the Kings and the Kerners. However, Joanna’s most recent CaringBridge journal post recounting the time she and Daniel spent with my mom described it beautifully, so I emailed Joanna and asked her if she would share her words with me. She said yes, so I’ll share them with you now:

“Meeting Sharon King, Taylor’s mom, for the first time was immediately comfortable and welcoming. There was no way that I would not bring Daniel to meet Sharon. We exchanged gifts for the kids; Taylor sent Daniel a UNC baseball cap signed by the Women’s Basketball coach Sylvia Hatchell, and Daniel gave Taylor his newly edited Braille book entitled Love. Someday, Daniel and Taylor will have an opportunity to meet in person. Until then, they will have a coast-to-coast friendship through their moms. There is a special bond the moms share that is on a level deeper than any peer friendships. We are woven together into a different cloth of life that creates a strong and compassionate quilt, assembled painfully through heartbreak and upheaval, grief and acceptance, strength and perseverance. A quilt, we hope, big and strong enough to smother the dragon and deliver our children back to their childhood dreams.”

As I write these words from my living room on the East Coast, Daniel is on the West Coast, probably sharing the company of his parents and his older brother and sister, perhaps eating dinner with them, no doubt making happy memories (because they, with the exception of our constant search for the cure, are the central purpose of every day we are given). Thousands of miles away, I am searching for answers, in the world out there and within my heart. I am fighting for Taylor. I am fighting for Daniel.

On the Highway

Published: February 19, 2009  ~   0
By Laura Edwards

This week, my mom is in San Diego for the Lysosomal Disease Network World Congress (Batten Disease is classified as a lysosomal storage disease). One of the presenters on the program is Sandra Hofmann, MD, PhD, whose infantile NCL project Taylor’s Tale has funded since mid-2007. Very few families attend this particular conference because it is so technical, but this is my mom’s second go-round, even though Taylor was diagnosed less than three years ago. That’s my mom – she won’t accept precedent, and she won’t miss a single opportunity to give kids like Taylor an edge. My mom and I joke that we stick out like sore thumbs at these conferences (I majored in English in college, and my mom majored in music), but we hold our own. We simply have to. We can’t offer anything in the lab, but what we can do is advocate for children with Batten disease – and all children with rare diseases – and understand enough of the research landscape to maximize our ability to support it with our fundraising and awareness efforts.

All of us – children like Taylor and families like mine and our friends and loved ones – are currently stuck in a car traveling down a single highway. We’ve been told what lies at the end of the highway by those who’ve gone before us – that this is a fatal disease and that the best we can do is provide comfort to those who suffer from it – and make as many happy memories – as much for us as for them – as we can. But I have a little bit of my mom in me, and I don’t like that itinerary. I don’t like the idea of a highway without exits and a car that travels at its own speed and doesn’t bother to tell me when it’s going to speed up or slow down.

I can’t have a new car, though – T’s genes are what they are. So the best I can do is keep my eyes open for an exit. I don’t know if there is one exit or if there are many, if they are marked or if we will have to rely more on our instincts. I don’t know if the exit will be created by enzyme replacement therapy, or gene therapy, or stem cell transplantation or something else – or if there will be more than one exit – but I know that something’s out there, and that we’re close, much closer than when I first got shoved into the car by invisible hands that day in the summer of ’06. See, though I may spend each and every day working toward a greater understanding of the science, I’m still a creative, and I don’t deal in black and white. I don’t deal in absolutes, and I like to throw a little color in there whenever I can. It may take a little imagination to help find the exit(s), but maybe that’s my role – I’ll leave the miracle-making to the ones in the lab. I don’t like the route that was chosen for us. And I’m not backing down.

Cellar Door

Published: February 17, 2009  ~   1
By Laura Edwards

Google the phrase ‘Cellar Door,’ and you’ll get a range of responses. The Wikipedia entry on the subject explains that J.R.R. Tolkien first described the sound the words make together as “intrinsically beautiful.” Say the phrase out loud, and you’ll understand. ‘Cellar Door,’ though it is the name of a physical object that is anything but beautiful, is just that.

‘Laughter’ spelled doesn’t look as pretty as it sounds. And if one is laughed at rather than laughs with, ‘laughter’ is not pleasing at all. But laughter, when it comes in its unbridled form from a child who has plucked happiness from a singular moment and embraced it in a hug, is beautiful. I love almost nothing more than listening to Taylor laugh. In those moments, ‘laughter’ is, to again borrow from Tolkien, “more beautiful than the sky.”

Yesterday, we went to Chapel Hill for the UNC – Georgia Tech women’s basketball game. Taylor got to meet UNC’s Coach Sylvia Hatchell beforehand and enjoyed the game – cheering louder than everyone else in the arena and at all the right times – from a seat right by the court. For my sister, though, her happiest moments came when Rameses, the UNC mascot, came to visit with her. The road from Charlotte to Chapel Hill stretches 150 miles, but I would have driven 15,000 to hear her laughter and see it in her eyes and in her smile in those fleeting moments.

Taylor has taught me a lot about what is beautiful, much of which comes from knowing how to appreciate the living elements in things, whether they be the whimsical notes of a cello or the whisper of the ocean as it laps against the shore. The cello and the ocean are also visually beautiful, but to recognize the beauty of their voices is to understand them more deeply. I have always loved the ocean, but I never truly heard its beauty until after my little sister had gone blind, when I went on a walk one early evening last summer and closed my eyes as the cool water washed over the tops of my feet and fell back again, over and over. I missed the sunset, but I didn’t feel as though I had lost anything at all. Taylor will never see another sunset in her lifetime, but she will forever teach me new things about the hues of golds and reds that grace the sky.