The Dying of the Light

By Laura Edwards

My grandparents used to have a beach house on Oak Island, a finger of land at the southern tip of North Carolina. Nearly every summer, we spent the Fourth of July week on the island; on the Fourth, we packed a huge picnic, piled into cars, drove across the Intracoastal Waterway and into Southport, a charming town raised where the Cape Fear River meets the Atlantic Ocean.

Before reaching the waterfront park, as if we didn’t already have enough food, we stopped at Hardee’s for a southern feast of fried chicken and biscuits and mashed potatoes and gravy and sugary sweet tea.

At the water’s edge, we spread our blankets on the short-clipped grass and stretched out to fill our bellies under a hazy blue sky while the boats drifted by. As the evening wore on, the lawn filled. My brother and I danced through the blankets and chairs clutching soft dollar bills from my Grandma Kathryn. We bought snow cones and glow-necklaces at the pier before the summer sun disappeared and the fireworks lit up the sky.

Time changes us all.

My grandparents had to sell the beach house around the time Taylor was born; it’s been many years since I last saw the Cape Fear River sky lit up by sparkling streaks of red, blue, green, purple, orange, yellow, silver and gold. My grandmother fought a brave battle against Lewy body dementia, but Lewy body dementia always wins; we said goodbye to her on Christmas Day 2012. And my sister, whose bright eyes used to drink in the world and all its beauty, lives in a world of darkness.

fourth of julyThis Fourth of July, John and I invited family and friends to our house to eat burgers and brats and watch the World Cup. Toward the end of the afternoon, my parents and Taylor appeared at the door. My sister has, thankfully, gained weight since her scary stint in the hospital. She looked pretty in her cotton dress, perfect for a summer cookout. She couldn’t eat with us.

After everyone left and the kitchen was clean, John and I piled into the back of my parents’ car and went uptown with them to find a parking lot where we could watch the fireworks shot off from the minor league baseball stadium. The home team’s pitching staff isn’t very good, and the game ran late. We sat in our folding chairs for a long while and talked while we waited for the show. It was unseasonably cool and felt nice, but I missed the salt breeze on my face and the aroma of my Papa Jerry’s bucket of fried chicken, even though I never ate it.

Finally, the fireworks began. I watched in silence next to my sister’s wheelchair. I remembered our own private fireworks show in Mom and Dad’s driveway just two years earlier. That night, Taylor sat in a golf chair and clapped each time Dad shot a Roman candle or bottle rocket into the night. As they exploded over the front yard, I called out the colors, one by one, to my blind sister.

Taylor didn’t clap for the fireworks this time. Instead, I held her hand in its soft purple brace. As the show ended, I savored the warmth of her touch, and I watched the dying of the light.


Good Medicine

By Laura Edwards

Taylor came home today. She spent six nights in Levine Children’s Hospital. On Saturday, she had a surgical procedure that represents a milestone. It’s not a happy milestone, like losing a front tooth or outgrowing training wheels or getting a first kiss. Families fighting a life-threatening disease have “milestones” they hope they’ll never reach.

Some things about the surgery have been “good.” My sister always had a beautiful complexion. She’ll be 16 in August; at her age, I think I would have given just about anything to have skin like hers. Since Saturday morning, the color has eased back into Taylor’s face, and the dark circles that ringed her bottomless eyes have begun to fade. And though it will take some time before she regains her strength and we all get used to our new “normal,” I saw my sister’s fire flicker not long after she returned to the small hospital room that served as her home for almost a week.

taylor and her friends

Charlotte, right, paid a special visit to Taylor on Sunday.

There are good people in this world, as I’m often reminded. Good people are good medicine. Thank you to everyone who reached out to me, via this blog or social media or email or phone or the old-fashioned way, to let me know that my sister is in their thoughts and prayers. Thank you to Dawn, who takes care of Taylor because it’s her job but also because she loves my sister. Thank you to Linda, a good family friend, who read “Green Eggs and Ham” to Taylor on a bright, sunny afternoon when my sister couldn’t get outside to feel the sun’s rays on her skin. Linda’s funny voices – different for every character in the book – made my sister laugh more than I’ve heard in a long time. Thank you to Jill, Taylor’s vision teacher for many years, who spent time with her as she recovered and once gave her the gift of words after her world faded to black. Thank you to Charlotte, my sister’s best friend from Fletcher and an angel. I didn’t cry on Saturday morning when I watched them wheel my sister back to the operating room, but I held back tears when Charlotte knelt by my sister’s bed and placed a framed photo from their fourth grade trip to the Radio Disney station in my sister’s hands.

Charlotte will be a junior in high school next year. Taylor should be a rising junior in high school, too. She should be learning to drive. She should be walking and running, around a track or on a field or after boys. She should be enjoying her summer vacation.

I’ve watched my sister struggle with a learning disability and lose her vision. I’ve watched her suffer from seizures. I’ve watched her fine motor coordination dwindle. I’ve watched her run 5Ks without the gift of sight 10 short months after harrowing brain surgery on the other side of the continent. I’ve watched her run her last race. I’ve watched her lose her ability to walk. I’ve heard her sing her last notes. I’ve heard her say “I love you” for the last time. So why is this milestone so hard to bear?

Our fight has never been so difficult, but I’m as motivated as ever to beat Batten disease and other rare diseases. The science exists to build a better future – soon – for people like Taylor. Learn more about our efforts here.


Talking to God Among Fireflies

By Laura Edwards

Taylor will have surgery in the morning.

taylor at poolTomorrow is the first day of summer. There’s a special magic about the longest days of the year, especially when you’re a kid; diving into the deep end of the pool and feeling the cold travel through you; eating popsicles on the porch railing till the juice dribbles down your chin; playing outside till the crickets chant and the fireflies light the shadows between the streetlights.

No kid should spend the first day of summer in a hospital.

Some people told us this surgery is a good thing, considering the circumstances. It will make things easier, they said.

I understand what they’re trying to say. And I’ve never hid from the reality of Batten disease, even that first summer we knew, when my sister still ran and jumped and sang and her eyes still saw the fireflies. But while I agree this surgery is necessary and even that it will make things “easier,” I don’t think it’s a good thing. Taylor won’t taste her own birthday cake when she turns 16 in eight weeks. Nothing about Batten disease is good.

I ran a solo 5K for Taylor tonight, because my legs wanted and needed to run for Taylor. Near the end of my run, I found myself on the gravel path around the pond in my neighborhood. As the sun dropped below the horizon, the fireflies came out to play. I stood in a stand of trees to watch them, and as I did, I found myself talking to God. I asked Him to give my sister strength, because that’s what she’s given me.


Pizza is a Privilege

By Laura Edwards

pizzaTaylor was admitted to Levine Children’s Hospital on Tuesday afternoon. When you’re fighting Batten disease, nothing is ever easy. But we’re all facing a crisis this week.

My mom used to be the queen of nighttime volunteer meetings, and growing up, we ate a lot of my dad’s grilled cheese sandwiches and Papa John’s pizzas for dinner. Taylor taught herself to read when she was 3, and I’ll never forget the day she read a picture book to me in the time that it took Dad to run into the neighborhood Papa John’s and pick up a pizza while we waited in the car.

I babysat my little sister more times than I can count. We spent a lot of hours snuggling on the couch in my parents’ basement, eating slices of plain cheese pizza, slurping Diet Coke through straws and devouring stacks of Disney movies on DVD. After I got married, we had a lot of pizza nights at my house. Mom and Dad packed a bag for her if they knew they’d be late, and when they finally tiptoed through the back door, they’d find Taylor curled up asleep with my dog, Daisy, dressed in pink pajamas and fuzzy pink socks.

When Taylor got older, she befriended Callie, who’s closer to my age and met our mom through another one of the community organizations she served. We had girls’ nights at Callie’s – Taylor, Mom, Callie and I. Callie always had pizza dough, and Taylor loved to make homemade pizza at Callie’s. She loved to feel the cool, sticky dough between her fingers. One night, we made chocolate cake to celebrate Taylor’s half birthday, even though it was almost a month away. My sister decorated the cake with lots of rainbow snowflakes, sprinkles and icing. Her vision was starting to fade by then, and that cake looked a lot like a Jackson Pollock painting, but I thought it was beautiful. We played Taylor’s favorite music and moved the kitchen chairs to dance, and the dogs ran between our legs. After dinner, we sang to my sister, even though it was only her half birthday. Callie didn’t have any birthday candles, so Taylor blew out a tea light in the middle of the Jackson Pollock cake.

It’s been years since my sister saw a sunrise, and she won’t walk without assistance again. So why is it so hard for me to accept that she’ll never eat another slice of pizza or a piece of birthday cake?


Between Haircuts

By Laura Edwards

Taylor portraitSome women get their hair cut and colored every six weeks like clockwork. My grandmother and great-grandmother filled the dryer chairs lining the wall of their beauty shop every Friday, and the ladies of Raleigh always had their hair washed and set for the church service on Sunday.

It’s been years since Taylor saw her own reflection in the mirror, but her outfits are usually cuter than mine, and her hair always looks great. God blessed my sister with gorgeous hair, and it’s been thick as deep pile carpet since she had brain surgery six years ago. That’s why my mom always says, “If you ever want to get great hair, just shave it off first.”

I still share a stylist with my sister and my mom. I had an appointment with Debbie tonight, right after Taylor. Debbie’s current location is a shop on the second floor of a small complex of boutique shops in a historic part of town. It has no elevator, and the concrete stairs go straight up, like the scary attic ladder at my childhood home.

A thunderstorm arrived just as Debbie snipped the last stray hairs off the top of my head. As we stood by the large windows up front and watched the world fall down outside, Debbie told me how my dad came to Taylor’s appointment with my mom in the afternoon. After my parents helped Taylor out of the car, Dad put my sister on his back and carried her up the stairs.

I didn’t see it happen, but I imagined it as angry rain fell from the black sky and pelted the windows. The image of my near-16-year-old sister draped over my father’s shoulders, her eyes unmoving, her hair perfect if a little long, washed over me, a melancholy beauty. And just before I came to, it occurred to me that the last time Taylor got a haircut – just six weeks ago – she climbed those stairs.


Back in the Dark

By Laura Edwards

I find that having an almost naive belief that most everything is possible fuels a mindset that can accelerate movement from the impossible to possible. ~Bradley Davis

start of blind runNearly seven months have passed since I last ran without the gift of sight. Special forces were at work the day I covered 13.1 miles in the dark at Charlotte’s Thunder Road Half Marathon. They were, and will always be, the most important miles of my life.

But while there won’t be another Thunder Road – at least not like that – some small part of me always knew the blindfold hadn’t served its last mission. Today is National Running Day. On this day last year, I took my first steps as a blind runner. Twelve months later, we’re closer to our goal, but Batten disease continues to steal the lives of kids whose voices I’ve heard and hands I’ve held. It’s winning the battle for my sister. That’s why tonight, I met my friend and guide, Andrew Swistak. I pulled down the blindfold, took one end of a short bungee cord and ran into darkness.

For days, I’ve wondered if blind running would be anything like riding a bike. After all this time, would it be like starting from scratch? Would I run into Andrew’s path or sprain my ankle on a manhole cover or speed bump – simple irregularities the sighted world doesn’t notice, but dangerous obstacles to people like my sister?

blind run on trackIt’s not quite like riding a bike, but we fell into an easy rhythm and even had a conversation as we ran. We didn’t take any chances, stopping to walk over the curb that claimed my ankle on this day last year. We headed for the middle school track where I first squeezed my eyes shut and ran forward on a wing and a prayer. There, Andrew took both ends of the bungee cord, and I ran untethered, as I did several times during the race. On the straightaways, we gathered speed, reaching a low to mid-7:00/mile pace. I remember thinking how important it was to have Andrew as my eyes when he gave me the signal to turn. I felt so light – so free – in those moments of running untethered that I would have gone on forever.

We stopped when we reached the 3.1-mile mark, appropriate considering that the 5K was Taylor’s distance. Tonight wasn’t a race, but I still asked Andrew about our splits and overall time. We ran it in 26:50, good for about an 8:38/mile pace despite the stops and walks for safety.

Even throughout our training runs last year, I always had to remind myself that it wasn’t about speed. It was about getting the story out there; it was about finishing the race; it was about something bigger than either of us.

But while none of my runs – blind or sighted – are really about speed – the fight against Batten disease is. Because with every day and week and month, with every year that passes, we have to say goodbye to more kids. I’m not ready to say goodbye to my sister. I’ll never be ready to say goodbye to her. I know that a 6:00/mile won’t get us anywhere more quickly than an 8:00/mile. If I don’t get a great time in my next race, I’ll be okay with that. But I’m not going to let Batten disease kick my ass in the race that matters.


After Thunder Road

By Laura Edwards

635205790014799504 2Almost seven months ago, I ran the biggest race of my life. When I crossed the finish line at Charlotte’s Thunder Road Half Marathon and removed my blindfold to fall into my mom’s waiting arms, I knew I’d never feel that way again.

But that didn’t mean I was ready to quit running or fighting. After all, Batten disease hasn’t quit. It’s still doing its dirty work. My sister still suffers, and children still die. We still don’t have a treatment for Batten disease. We still have 350 million people fighting one of 7,000 rare diseases. We still don’t have an FDA-approved treatment for 95 percent of those diseases.

In the seven months that have passed since I hurdled the timing mats under the giant ‘FINISH’ banner as my guide, Andrew, yelled “Jump!” and then “Jump!” again, I’ve thought long and hard about the answer to one simple question: “What next?” While many of our friends talked about the next blind run before the tears we cried at Thunder Road were dry, I always knew in my heart that there would never be another Thunder Road – at least not like it was on November 16, 2013. That day was its own moment in time. No one can take it away from us, and it can’t be replicated.

During my months of training to become a blind runner and far more so in the months following the race, my sister slipped farther down the chasm of Batten disease. It is a deep, dark chasm. There are no footholds for climbing out, and some days, no light reaches her ledge. And yet, each day she teaches me something new about courage; each day, she imparts some great piece of wisdom without having to say anything at all.

Thunder Road finishTaylor with medalSeven weeks before the diagnosis, Taylor and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears. That night, Taylor told me she wanted to go to Hawaii. We never made it to Hawaii, and in November, my sister couldn’t come to the finish line at Thunder Road. Travel isn’t really in the cards for her now. She won’t see the world or experience all of its wonders. But the world will lose more when it loses Taylor.

Taylor can’t travel, but I can. And I vowed to run – and fight – for her until my body gives out or we beat Batten disease, whichever happens first. So this summer, I’ll begin a quest to run a race for my sister in all 50 states. Everywhere I go, I’ll take her story with me.

I have a pretty good race lined up to kick things off, but I’m not sharing details just yet. Stick with me for a few more (thousand) miles. 4Taylor. We’re going to write the happy ending to this tale.

Today is National Running Day, and I’m inviting you and your friends and family – runners and non-runners – to run for Taylor, too. Run a mile or two or 20; run fast or slow; run wherever you’d like; the how and the where aren’t important. Just remember that once upon a time, my blind sister looked Batten disease in the eye, said, “You can’t stop me,” and ran a 5K race. Twice. That’s how my sister lives her life. That’s how I try to live mine.

If you run for Taylor today, I want to hear about it! Leave a comment here, or share your story with Taylor’s Tale on Facebook or Twitter.


National Running Day, a Nod to the Past, and a Glimpse of the Future

By Laura Edwards

blindfolded run 1National Running Day, held annually on the first Wednesday in June, is a national celebration of running. Since 2009, runners everywhere have marked the day by celebrating their passion for the sport.

In the final hours of National Running Day last year, I jogged to a middle school track under an inky, starless sky. There, on the asphalt oval worn smooth by the pounding of thousands of adolescent-sized shoes, I took one end of a short bungee cord in the palm of my hand and squeezed my eyes shut; led by the voice of my friend and guide, Andrew Swistak, I began my initiation as a blind runner.

I ran in darkness eighteen times prior to taking on the biggest race of my life, Charlotte’s Thunder Road Half Marathon, on November 16, 2013. Nothing about my training or the race ever came easily, but I said then, and still feel today, that the near-two hours I spent on that course embodied the most incredible experience of my entire life, something that can never be repeated or recaptured.

Shortly after the race ended, everyone asked, “What next?” We accomplished almost everything we set out to do. We raised money for the fight against Batten disease. We had one of the largest teams at Charlotte’s biggest race. We achieved local, state and national media coverage including the cover story in North Carolina’s Endurance Magazine and a nod in Runner’s World magazine. In fact, as I reflected on the race in the hours and days after I hurdled the timing mats at the finish line and buried my face in my mom’s shoulder to cry, I realized that I had just one regret: my sister, Taylor – the inspiration for it all – had declined so much during my months of learning to run 13.1 miles without the gift of sight that she wasn’t well enough to come to the finish line.

And so, as the monster called Batten disease continues to rob bits and pieces of my sister and the lives of children like her, whose hearts hold great love and whose lives once held great possibility, I continue to fight. When people asked me when I’d run another race blindfolded, I said there wouldn’t be another blindfolded race. I can’t reproduce the singular magic of what happened that day, and I won’t try.

But this Wednesday, to celebrate National Running Day and my sister’s courage that still shines like the bright beacon in a storm, I’ll don the blindfold one more time; Andrew will lead me as I run into darkness, and the future.

I’m inviting you and your friends and family – runners and non-runners – to run for Taylor, too. Run a mile or two or 20; run fast or slow; run wherever you’d like; the how and the where aren’t important. Just remember that once upon a time, my blind sister looked Batten disease in the eye, said, “You can’t stop me,” and ran a 5K race. Twice. That’s how my sister lives her life. That’s how I try to live mine.

As for the future…I may be running Thunder Road with my own two eyes this fall, but I have some pretty special things in store. Check back later this week to learn about my next challenge. This fight’s not over. Not even close.

If you run for Taylor on National Running Day, I want to hear about it! Leave a comment here, or share your story with Taylor’s Tale on Facebook or Twitter.


A Full Life

By Laura Edwards

I worked for one of our local hospitals for eight years. But when I walked through its revolving front door today and took a right down the main hallway, I saw and heard the world inside through different eyes and ears.

When the elevator doors opened on the fourth floor, I turned to the left just as my dad approached me. He had on a suit, but his jacket and tie were missing, and his collar was loose. Without saying a word, he led me into my grandmother’s room, where she was locked in twisted slumber.

The compact room’s mint green walls made the room feel smaller. An ancient Zenith TV hung in the corner, its screen dark. I wondered what my grandmother would watch if she could still follow a story.

Rays of early afternoon sunlight slanted through half-drawn blinds and found an open booklet on the table. A black and white diagram indicated exactly where the stroke occurred.

Her once porcelain skin looked pale. Her white hair, always permed even in the years since she moved to the memory care center, sat limp.

ferryAs I stood near the end of the bed and watched the warm sunlight play on the sterile hospital equipment, my thoughts drifted to a trip to New York City with my grandparents in the summer of 1990. We stayed at the Hilton, where the housekeeper placed my stuffed dog, Brownie, on the pillow on my rollaway cot every morning. We ate chocolate mousse at La Cote Basque and cheese omelets at Mme. Romaine de Lyon. We took a limousine to FAO Schwartz and the ferry to the Statue of Liberty. We stood on top of the World Trade Center, and I thought we were on top of the world.

I wanted to tell her that story, but when I opened my mouth, nothing happened. Instead, I thought about how much I hate brain disease; how much it steals; how much more I would have done when she still knew my name, had I known.

In that same instance, I considered the full life my grandmother lived; the education she received; the things she achieved; the places and things she saw; the children and grandchildren she had. And I thought about how Batten disease is robbing my sister, Taylor, of all of those things; how we have a lifetime of memories with my grandmother, but when it comes to my little sister, Batten disease is stealing those, too.