Exploring Fairyland on Wheels

Published: September 30, 2010 ~ 0

By Laura Edwards

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 flood lamps 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 teenage 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 developed a keen awareness 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 others with Batten disease 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

Published: September 22, 2010 ~ 0

By Laura Edwards

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 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 inside of her. 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 disappear.

Nostalgia

Published: September 16, 2010 ~ 0

By Laura Edwards

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 locked 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

Published: September 8, 2010 ~ 0

By Laura Edwards

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 in Virginia for a quick Labor Day trip. The escape didn’t come a moment too soon for any of us, and under a flawless 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 Taylor’s Tale, the non-profit organization 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 was shared with me by 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. These words light the way when my path becomes dark; they help 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 being honest 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 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

Published: August 28, 2010 ~ 0

By Laura Edwards

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 during her time with 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 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, North Carolina, to Sioux Falls, South Dakota, 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

Published: August 21, 2010 ~ 0

By Laura Edwards

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 5 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 nothingness, time stood still, and I actually saw my mom’s visor fly off her head as she came towards 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, South Carolina 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 barreled 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

Published: August 18, 2010 ~ 0

By Laura Edwards

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 twelfth 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 Tar Heels, 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

Published: August 6, 2010 ~ 0

By Laura Edwards

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

Published: July 30, 2010 ~ 0

By Laura Edwards

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 Batten disease research. I look forward to sharing many details in our summer e-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.