Uneven Ground

Published: July 14, 2013 ~ 0

By Laura Edwards

On Nov. 16, I’ll run the Thunder Road Half Marathon blindfolded to honor my little sister’s fight against Batten disease and raise money for gene therapy at the University of North Carolina. Since early June, I’ve gone on six training runs with my sighted guide, Andrew Swistak, and we made more progress in those first six runs than I ever dreamed possible.

But I haven’t run in darkness since July 1. I’ve been on vacation for a week, and our schedules don’t jive in the coming week. I’ll keep my fitness level; running is part of my life, whether or not I’m training for a race. But I’m not blind, and running without my eyes isn’t like riding a bike without training wheels. It takes practice. So I expect to be a little rusty the next time I pull a blindfold over my eyes and grab hold of my lifeline, a three-foot bungee cord.

I’ve been on the South Carolina coast for the past week, and I laced up my third-string Brooks Glycerin shoes – the ones that have about 800 miles on them – for a couple of runs on the beach. On a late afternoon run at low tide, I thought about my long stretch without any practice runs with Andrew and wondered if I could survive a near-deserted, flat area of the beach with my eyes closed.

I started my experiment on the part of the beach between the powdery dry sand that the waves never reach – ankle-breaking sand – and the damp sand that just hours before had been underwater. I scanned the beach ahead of me for tidal pools and child-dug holes, saw none, said a silent prayer and closed my eyes.

Ten seconds later, the surf filled my tired Brooks shoes. The tide didn’t change; I just veered off course by seven or eight feet in those 10 seconds.

I kept my eyes open the rest of the way.

My self-imposed lesson brought back a memory of a hot summer afternoon at the same beach six years ago. Taylor’s vision had already begun to fail her, but otherwise, she was still the happy, vibrant, healthy kid we knew.

Despite her vision loss, Taylor could run from our chairs to the ocean and back again, low tide or not. She had one hell of an internal compass, and she had no fear.

I’ve never been as fearless as my little sister. Even in that 10-second experiment on the same beach Taylor once ruled in summers that are now only a memory, I feared that I might re-injure my ankle or trip over a child running out of nowhere to chase a seagull or catch a wave.

Like it or not, those smooth, wide beaches are in our past. The path ahead is uneven ground. I’ll need at least an ounce of my sister’s courage to keep going. And whether I run one blindfolded race or one hundred, I’ll need to keep my eyes wide open for the real fight.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

High Tide

Published: June 26, 2013 ~ 0

By Laura Edwards

July 4 is next week, and unlike so many years of my childhood, we’ll spend the holiday at home in Charlotte. We used to celebrate Independence Day in the waterfront park of Southport, NC. Every year, we packed a huge picnic and spread our blankets in the grass and stuffed our bellies and stretched out on our backs to watch fireworks in every color of the rainbow light up the black sky over the Cape Fear River. Then, we piled in our car, exhausted but happy, and drove back to our beach house on Oak Island.

We haven’t seen the Southport fireworks in more than 15 years. In that time, my grandparents had to sell the beach house. Marriages ended. Kids went away to college, graduated and got jobs. Weddings happened. We learned that my little sister has Batten disease. My grandmother, an angel on earth and the matriarch of our family, went to heaven this past Christmas Day.

Five or six years after my grandparents built the beach house, the town started to have problems with erosion on the beach. My grandmother once told me that the problem stems from the fact that Oak Island meets the Atlantic Ocean at an odd angle. The cabana at Long Beach just up the street from our house washed away, so the town rebuilt it. If we wanted to take a walk on the beach, we had to time it just right, or else our walk could turn into a swim.

And yet, that sandy finger of land on the coast of North Carolina always held magic for us, even as the forces of nature exerted their will. We loved the new cabana just as much as the old one. We missed having a wide beach, great for long walks and sand dollar hunts and dreaming, but we just pulled our chairs right up to the dunes where the waves couldn’t get us, dug our feet into the thick sand and drank up the sun.

But life is not a beach, and Batten disease is not the ocean.

Will these waves of change keep pounding away until we have nothing left but our memories?

Full of Wonder

Published: March 31, 2013 ~ 0

By Laura Edwards

We spent many of the Easters of my childhood on Oak Island, a marshy finger of land sitting in the Atlantic Ocean just off the southern tip of North Carolina. My grandparents built a cedar shake house about a mile from the beach, on a scrubby patch of land on 48th Street – a long, residential road that ends at the Intracoastal Waterway. They never poured a driveway, so when my brother and I hopped out of the car after excursions to the beach or the town park, we often found ourselves ankle-deep in thick, dark gray sand teeming with fire ants.

In those days, Oak Island wasn’t a tourist destination and had a small, mostly older year-round population; it didn’t boast many restaurants, much less churches. So to celebrate the holiday, my Presbyterian family and I donned our Sunday best and drove to the Baptist church at the corner of our street and the island’s main road. After the service, we changed clothes at the beach house and went to the park, where Mom and Dad and our grandparents hid eggs we’d helped them hard-boil and dye in every color of the pastel rainbow in the airy kitchen with the vaulted ceiling the night before.

These are the memories that define Easter for me. I realize only now, as I share them here, that my sister Taylor isn’t in any of them. The last picture of the beach house that I remember is of my mom – eight months pregnant with Taylor – in the sun room where I sat at the white desk to draw pictures and curled up on the love seat to lose myself in a story after a sun-drenched day on the beach. My grandparents had to sell the house that year. It was an “adult” thing that I didn’t notice at the time or understand after it was over, even after I’d had time to dry my tears.

It’s been nearly 15 years since the beach house changed hands, but I still miss it. Even more than the house, I miss the way of life that’s disappeared in recent years. The house itself had its imperfections; at 1,500 square feet, it didn’t have enough bedrooms to hold our extended family, and it never stayed cool during the brutal summer months. The blue vinyl couches in the living room made you sweat even if icicles hung from the porch railings outside. We didn’t have a first row or even a third row view of the ocean; 48th Street runs perpendicular to the ocean road, and our neighbors across the street had an odd affection for plastic yard ornaments. And those fire ants…

But I’ll never forget our late-night egg-dying sessions or our private Easter egg hunts in the park; Fourth of July fireworks on the Cape Fear River in Southport, just across the bridge on the mainland; picnics in the wind-beaten cabana on the Oak Island beach; family baseball games at the town’s baseball diamond and the satisfaction of knowing that I had the coolest grandmother in the world as I watched her run the bases after hitting the ball into left field; walking to the end of 48th Street in the hours before dusk to find my favorite rock perched on the shore of the Intracoastal, scribble stories in a worn spiral notebook and shape my dreams.

The meaning of Christmas, the holiday that celebrates the birth of Christ, is easy for most people to understand. But a lot of people lose perspective when it comes to Easter.

Easter, the holiday that coincides with the arrival of spring, celebrates the resurrection of Christ. But in simpler, more universal terms, it celebrates new life.

We’ve lost so much since the days of the beach house. My grandmother, the matriarch of our family, passed away on Christmas Day 2012, but we lost much of her to a monstrous brain disease called Lewy body dementia long before that. Taylor, absent from all of those happy Oak Island memories, began with a life that seemed full of promise. She has lost more than all of us.

But in the wake of heartbreak, new hope still emerges. That is the miracle of life. And I understand now that THAT is the miracle of Easter – that it’s possible to BELIEVE even after a tragedy. God’s greatest miracle was the resurrection of Christ and the gift we received – eternal life.

Batten disease is senseless. It’s terrible. It’s tragic. It’s winning the battle for my sister’s life here on Earth. It’s stolen so much – priceless pieces of Taylor that we’ll never get back; pieces of ourselves, stripped away by the pain of being faced with losing someone you love to a monster like Batten disease; and most of our energy as we battle it day in and day out to give hope to future Taylors.

But we live in a world full of wonder.

Tomorrow is a new day.

I believe.