Emptiness

Published: May 13, 2014 ~ 8

By Laura Edwards

We started tonight around the table at my parents’ house. Dad picked up takeout from our favorite Italian restaurant. Mom made a fresh salad and baked brownies. But for the faraway look in my sister’s eyes, we could have been any other family sharing a meal on a weekday.

But we never made it to dessert.

Batten disease steals everything, especially the things you love. My sister loves music and her family. Our presence tonight and soft music playing on speakers in my parents’ kitchen proved to be too much for her system to handle.

That’s why, before we ever made it to Mom’s brownies, we found ourselves huddled around Taylor on the floor as she suffered a series of seizures. As I watched Mom and my husband and brother cradle my sister and attempt to calm her down, I recalled a long-ago day that we all held each other on the floor of my parents’ bedroom upstairs, struggling to understand the news we’d just received.

Our lives would never be the same.

Can I Call You in Heaven?

Published: May 8, 2014 ~ 2

By Laura Edwards

Taylor had a tough day.

When I walked into my house tonight, I buckled my dog’s harness and leash and laced my shoes. I got home much later than usual and missed seeing most of my neighbors out walking their dogs or mowing their lawns. Though the quiet streets had a soothing effect after a trying afternoon, I found myself scrolling through the contacts on my phone, looking for somebody, anybody, to call not long after Daisy and I set out into the balmy spring night.

But after a minute, it dawned on me that I really just wanted to talk to my grandmother. So I put the phone away. I turned my face toward the darkening sky, and I waited for her to help me understand.

Mom told me that my little sister smiled and laughed today, even in her darkest moments. Tonight, I sat on the side of my parents’ bed and watched her sleep. She looked tiny curled up beneath the cool sheets. I memorized every detail of that moment, from the way the early evening light hit her deep, honey blonde hair to how her long eyelashes grazed her soft cheeks.

She looked like an angel.

Throwback Thursday Dream

Published: May 1, 2014 ~ 2

By Laura Edwards

#throwbackthursday may be the most popular hashtag game in the history of hashtags.

My extensive photo collection is the subject of lore among my family and close friends. There’s no telling how long hashtags will stick around, but I could play this game for a million Thursdays.

Nothing about Batten disease has been easy since my sister’s diagnosis in the summer of 2006. But I can’t find the words for 2014. I run for my sister because watching her run two 5Ks after losing her vision is the most inspiring thing I’ve ever witnessed. So it’s hard to fathom that she struggles to walk a few feet, even with a walker, and will soon be confined to her wheelchair. I can’t explain how it feels to know that Taylor will never talk to me again; sometimes, I think that’s the worst part. When I hold her hand, I hope she knows who I am. But I’m not sure.

If I could, I’d give up every last picture I have for one chance to go back in time, for just one day.

My sister talks and sings and laughs; she runs and skips and plays. She hums along to the beat of a song, and we talk about our day.

We share ice cream cones by the fountain in the muggy afternoon. She holds her own and licks the chocolate chip cookie dough, her favorite, from the sugar cone as it melts in the sun.

We walk to the park so I can push her in the swing. She tells me to push her higher, higher! She squeezes the chains and stretches her legs toward the sky.

We wind down in front of a movie on the sofa in the cool basement of my parents’ house. She snuggles close to me and watches the princess story, her bright eyes focused on the screen.

At night we lie side by side in the grass, our hands behind our heads. We count the stars and lightning bugs, and a little girl shares her dreams.

Confessions from Laurel Hill

Published: April 26, 2014 ~ 5

By Laura Edwards

Today, I joined 6,200 other runners for the seventh annual Tar Heel 10 Miler in Chapel Hill.

John and I jogged from the Carolina Inn to the bell tower on the campus of my alma mater, the University of North Carolina (UNC); we met Steve Gray, our friend and a UNC gene therapy expert whose work makes me believe, just as the morning light touched the towering pines and the dew-kissed pink and white azaleas.

I’ve battled various injuries since early March, including a mysterious ankle problem for the past week, that have limited my training; I ran just 25 miles in April prior to today’s race, less than an average week for me in 2013. I didn’t know what to expect from this race, my fifth consecutive entry in the Tar Heel 10 Miler. Butterflies wrecked my insides as we waited to begin. But no matter what, I start every race with the intent to run faster than I’ve ever run before. One month ago, I ran the Charlotte 10 Miler in 1:17:49, a 7:46/mile pace. So after Steve and I saw John off for the four-mile run, I wished Steve good luck and found my way to the 7:30/mile pace group.

I got off to a quick start and stayed with my pace group for most of the race. But around mile six, I began to feel winded. I wondered whether I’d started too quickly.

As I hit a long downhill stretch close to mile seven and eased up to save my quads, I thought about my family at home in Charlotte. My parents and Taylor started the 150-mile trek to Chapel Hill on Friday evening, because they wanted to be there for me today. But when you’re fighting Batten disease, a lot can happen in 150 miles.

My family never made it to Chapel Hill last night; Taylor got sick around Greensboro, and they had to turn around and go home.

I hate Batten disease.

I know the Tar Heel 10 Miler course almost as well as my own neighborhood, but Laurel Hill always sneaks up on me. Laurel Hill, the 200-foot vertical gain that spans just under one mile near the end of the race, is a personal record (PR) killer. A lot of people walk it. Though I’ve come close to speed-walking the tough stretch, I always find a way to power through the hill (actually a series of consecutive hills). Last year, I ran Laurel Hill in 7:18.

But as I began the first steep climb, I felt a deep burn in my legs and my chest. I fought through the urge to slow to a crawl.

When I crested the first hill, I came upon a small crowd of supporters clustered at the top. Keep going, they said; keep pushing; you’re almost done. In the middle stood a woman clutching a poster that read, “Don’t stop believing.”

At that moment, it hit me: I’m going to lose my little sister, no matter how fast I run.

I’ll never know what quit on me – my legs or my heart. But there, under a canopy of trees and the bright, blue sky beyond, I walked for the first time ever in a race. And as I took long, deliberate strides toward the finish line, I cried behind my sunglasses.

I didn’t run my best race today, but I finished. The ghost of Laurel Hill behind me, I recovered to run the last mile in 7:18 with wet eyes. I floated through the stadium tunnel before sprinting onto the track for the final stretch, pummeling Batten disease every time my shoes pounded the rubber.

Though she proved too ill to travel to Chapel Hill, I felt my sister’s presence when I crossed that finish line at 1:24:11.

And I still believed.

On Boston and Believing

Published: April 22, 2014 ~ 0

By Laura Edwards

Yesterday, a nation watched as an American man won the Boston Marathon for the first time since 1983 and an American woman held the lead for 17 miles, finishing seventh. I stood 10 feet from the male winner, Meb Keflezighi, when he served as the official starter for the Tar Heel 10 Miler in Chapel Hill. I was a classmate of the top American female, Shalane Flanagan, as an undergrad at the University of North Carolina.

Meb’s race ended in joy, while Shalane’s ended in heartbreak; in the end, her very best wasn’t quite fast enough to win.

But as I reflected on these runners’ experiences and the bigger picture of yesterday’s race, the 118th edition of the world’s most prestigious marathon, I thought about how the sport of running embodies so much more than getting from one place to the next or attempting to cross the finish line first.

In Boston, it’s a symbol of the ties that bind a city and a nation in the face of a terrible crime, an unspeakable tragedy.

For me, it’s an enduring symbol of my sister’s great courage, even though it’s been nearly five years since she completed her last 5K and she can no longer walk without assistance.

For anyone who has ever run or dared to dream, it’s a symbol of what it means to believe.

I Trust that He Understands

Published: April 20, 2014 ~ 0

By Laura Edwards

What does Easter mean to you?

My sister can no longer walk without assistance, but together, we found beauty on this sun-drenched Easter Sunday.

Never a consistent churchgoer as an adult, I’ve had a complicated relationship with God since we learned my little sister has a fatal disease with no known treatment or cure the year I turned 24. Though I didn’t blame Him for the tragic flaw in Taylor’s genes, I couldn’t imagine going to church on Sundays. It just didn’t feel right to sing joyful hymns while Batten disease worked its silent dark magic.

I still don’t make it to church except for once in a blue moon. But though I don’t often put on my Sunday best and fight traffic to visit the stately church in uptown Charlotte where I was baptized, I talk to God every day. I pray more than I ever prayed in all of the years I participated in youth group and went to Sunday school and sang in the choir and rang handbells and dragged my feet as my family rushed to make it uptown for the 11 a.m. service. I talk to Him when I run for Taylor. I talk to Him when I find myself atop a high mountain ridge or deep in a glacier-carved canyon. I talk to Him late at night after my husband thinks I’m asleep, as I lie in bed and stare into the blackness and imagine what it would be like to be blind.

I used to ask God to let my sister live.

Now, I ask Him to give her happiness. I’m not sure what that means, and I think it means something different now than it did when I first asked for it. But I trust that He understands.

Easter celebrates God’s greatest miracle: the resurrection of Christ and eternal life, the gift we received as a result.

For me, Easter is also a celebration of life in the face of death; it’s a reminder that love conquers hate; it’s proof that even in the wake of the worst possible kind of heartbreak, the world is full of great beauty.

You only have to believe.

Being the Best You Can Be

Published: April 14, 2014 ~ 2

By Laura Edwards

Saturday morning marked my second race of the year for Taylor, the Charlotte RaceFest 10K. A well-organized race around the corner from my house, it serves as a great warm-up for Chapel Hill’s Tar Heel 10 Miler.

Normally a stickler for race preparation, I’ve been breaking lots of rules lately.

Eight days prior to RaceFest, I ventured out to a local CrossFit gym with a group of coworkers over lunch. A CrossFit rookie, I went a little nuts with my squats and paid for it with sore glutes, hamstrings and quads for five days. I learned that just because I can run a five-minute mile doesn’t mean I’m too good for the beginner’s kettle bell.

The day before the race, I felt a deep, sharp pain in my lower right leg. It hurt so much that I couldn’t walk my dog, but I’ve never pulled out of a race. I slathered the area with Biofreeze gel and popped a couple of ibuprofen pills.

That night, I laid out all of my clothes and race odds and ends, from my race bib and safety pins to Yurbuds wireless ear buds. I met my foam roller for a post-dinner date and iced my calf. I fell into bed a few minutes before midnight.

On Saturday morning, I pulled on my Taylor’s Tale shirt and 4Taylor compression arm sleeve. In the name of injury management, I made a fashion statement with my compression shorts and calf sleeves. I toasted a bagel, but I felt too nervous to eat. As stubborn as I am, I knew in my heart that I probably shouldn’t run.

I didn’t have time to warm up before the race, but I managed a 7:16 pace over the first mile, likely on adrenaline alone. I knew I couldn’t maintain that pace injured, but I tried to listen to my body and remember my reason for running.

With less than two miles to go, I approached a girl I recognized from one of the Charlotte soccer leagues I frequented before injuries ended my career. She may be a nice person, but on the field, she played dirty. I hate to admit this, but part of me focused on beating her, and I drafted her for the remainder of the race.

As I approached the last stretch and the finish line came into view, I knew I didn’t have a shot at a personal record (PR). I always sprint the final stretch. But when I reached down into that deep, passion-fueled place where I usually find my last burst of speed, I realized I didn’t have anything left. I talked myself through the last 100 yards, and I chugged across the finish line at 48:53, a 7:52/mile pace – 59 seconds slower than my 2013 time but still good for 10th place in my age group (and five seconds ahead of my “drafting buddy”).

Perhaps if I’d pulled out of the race altogether or finished a good 10 minutes off my PR, the result would have been easier to swallow. It took me a few minutes of walking around, breathing in the fresh air and feeling the warm, spring sunshine on my skin to remember that I ran a great race for a chick on one good leg and, more importantly, why I ran the race in the first place.

That’s the great irony of “racing” for my sister and hero, Taylor: she finished two 5Ks but never entered an athletic competition to “win.”

So as I finally came to terms with my time and kicked back at a table across the way to break my hunger, with a finisher’s medal around my neck and my heart on my sleeve, I remembered one of the many great lessons my little sister has taught me in her short time on this earth.

It’s not always about finishing first.

Sometimes, it’s about being the best you can be, every day.

National Siblings Day

Published: April 10, 2014 ~ 4

By Laura Edwards

Today is National Siblings Day, a celebration of the special bond between siblings. For five years, three months and 17 days, I lived the blissful life of an only child. Then, my brother Stephen charged into my world, bringing with him endless plastic sword fights, video game battles and wars of words.

We wrestled over the right to wallow in the family room recliner. Sometimes, we stopped long enough to pretend we loved each other for the camera. I probably poured that drink over Stephen’s head right after the photographer took this photo.

We showered some of the love we didn’t give to each other on our first family pet, Howie, who loved everyone except HIS brother – my grandmother’s dog, Simon. Howie, a good old soul, would have killed Simon given the chance.

Sometimes, I allowed Stephen to come in my room and even sit on my furniture. But I didn’t like it.

The year I got my driver’s license, my sister Taylor popped into the family, upending our accepted norm and replacing me as Stephen’s main adversary in backseat tangles. I didn’t like speaking in public as a kid, but Taylor helped me chill out before the Carousel pageant competition during my senior year of high school.

She made an able, willing helper whenever Stephen or I had birthday candles to blow out.

She may have given him hell, but she still let Stephen carry her whenever the mood struck.

She made a great “senior” flower girl.

We met the “real” Aladdin and Jasmine together during two dreamy days in Disney World.

Siblings make great dance partners.

Taylor could convince our brother to try on silly hats in public.

He hugged her at the finish line of her second 5K.

Between the three of us, we’ve had our fair share of sibling battles. But we’ve learned to love each other…even my brother and me.

Because more than anything, siblings are bound by love.

Do you have a sibling or siblings? If so, what makes your relationship special?

What Matters

Published: March 31, 2014 ~ 0

By Laura Edwards

My husband and I live in a great neighborhood, and for the most part, we’re blessed with good neighbors. We bought our house eight years ago, and we’ve watched a few families come and go. We’ve grown close to some of them and liked just about all of them.

But there is this one family…

These neighbors – I’ll call them “Jack and Jill” because it’s Monday night and that’s about the extent of my creativity – don’t mow their lawn as often as they should during our North Carolina summers. They have interesting taste in landscaping. When they repainted their siding, they (inexplicably) skipped a couple of boards on one side. John and I started placing bets on whether or not they did it as a fashion statement. Their kids seem to multiply with reckless abandon (I really don’t know how many they have), which would be okay except that they don’t always watch them. Our house is perched on a hill, and we had bushes around our mailbox until a few years ago. Their oldest daughter invented a game in which she’d hide in the bushes and wait until I backed down the mountainous driveway, then jump into the path of my SUV at the very last second. I almost hit her a couple of times. Almost. This same daughter likes to crawl through the doggy door of my next-door neighbor’s garage when my neighbor’s away. Heck if I know what she does in there, but she can’t be up to anything good. They have dogs that would happily kill my dog, which would be my problem except for the fact that they routinely let their dogs escape, often while I’m walking my 13-pound dog down the street. And “Jack” is not allowed to borrow my husband’s tools. My husband owns every tool under the sun, and Jack borrowed one of them last year. John didn’t think it was possible to break this tool, but Jack proved him wrong – and didn’t say anything about it (even though it was obviously broken when he returned it). So he lost tool-borrowing privileges. Needless to say, there are days when I wish Jack and Jill would roll down the hill.

Spring is in the air, and I celebrated by going for a run when I got home from the office tonight. Later, on my cool-down lap, I passed Jack and Jill’s house and heard voices and laughter in the backyard. Without meaning to spy, my eyes flicked toward the house, and I saw the source of the noise: there was Jack, playing with his girls on their trampoline. One of them said, “Again, Daddy!” and he took her hands in his, and they jumped for the heavens, and her squeals pierced the scene lit by sunset.

As I set off for home, I thought about how much my dad would give to jump on a trampoline with my sister Taylor, who, thanks to Batten disease, can no longer jump or dance or run or sing. I thought about how blessed my brother, Stephen, and I am to have had so many incredible years with our dad, from sleep-away camps with the Y Guides and Boy Scouts to Charlotte Hornets games and fishing on the golf course and swimming in the ocean and all of our soccer and lacrosse games. And as the laughter of those girls faded into the night, I forgave Jack for his weird taste in landscaping and a couple of unpainted boards.