By Laura Edwards

At 7:30 tomorrow morning, my hometown should be drenched in a cold, steady rain. I’ll be on the south side of town with 619 other soaked nuts, running the Charlotte 10 Miler in Taylor’s honor for the second straight year.

Last year, we got a blue sky and just enough of a winter chill to cut through my long-sleeved tech shirt – good for some lung burn on the nasty hill at mile eight, but not too much to bear.

This year, I might have lakes in my shoes by mile two. So while the kicks I’ll call into service for this race cost more than some of my designer heels when I bought them, they’ve pounded more than 500 miles of asphalt roads, concrete sidewalks and pit gravel tracks; I’ll leave the shiny, new, broken-in-just-enough pair in my closet at home. I haven’t decided if I’ll expose my iPhone – keeper of my special music playlist – to the elements. And if that isn’t enough to throw me out of whack, I had a third surgery on my nose – I obliterated it playing soccer almost three years ago – last month and had to put a short hold on my training.

Needless to say, I don’t know if I’ll set a new PR tomorrow.

But this running thing, I’ve learned, is all about making adjustments; it’s about knowing how to perform even when the elements you can’t control – from the weather to your own body – deal you a wild card. A soccer player turned distance runner who didn’t enter a race till I turned 25, I made a living on the soccer field by being faster than everyone else. I set up shop on the sideline and went up and down, down and up, for 90 minutes, every game. While I miss soccer – I reached my limit for surgeries induced by the sport – I love how the sport of running can be a journey. I can stick my ear buds in my ears, lace up my shoes, run down my driveway with my house at my back and just wait for the path – and the world – to come to me.

Life is a little like that, too – and in a weird, roundabout way, so is our fight against Batten disease. I had no inkling of Batten disease until the moment my mom called me in tears on the morning of July 24, 2006 – the day of Taylor’s diagnosis. I was 24 years old that day; I was one month into my marriage and eight months into a new job; I’d recently bought a house; I was writing a novel. I had a very specific plan for my life, and I didn’t think anyone – or anything – could get in my way. But Batten disease forced me to make tough choices. It forced me to take a few detours. Batten disease was bigger – and more awful – than anything I’d ever faced.

We’ve all taken more than a few hits since that day in 2006, but we’ve won some big races, too. And the best part is, we’re still running – most of all Taylor. My favorite quote of all time is one by Cindy Smith, whose son, Brandon, passed away in 2009 after a courageous battle with infantile Batten disease. Cindy said that “Life is not waiting for the storm to pass. It’s learning to dance in the rain.” And just as Brandon taught his family to dance in the rain, Taylor has taught me to keep going on not only the best, but also the worst of days. So you’d better believe that I’ll keep running – on roads, sidewalks, tracks and in this fight for children like Brandon and Taylor – for as long as I’ve got legs for running and heart for fighting.

p.s if you’re half as crazy as me and live in the Charlotte area, come on out to the finish line of the Charlotte 10 Miler around 8:45 tomorrow morning. I’ll be the one in Taylor’s Tale purple and the water-logged, no-tread shoes. 

Shelter from the Storms

By Laura Edwards

The sixth anniversary of my sister’s diagnosis is in six weeks. I still don’t know it all, but I’ve managed to learn a few things in the past six years:

  • The secret to life isn’t waiting for the storm to pass; it’s learning to dance in the rain (borrowed from Cindy Smith, who lost her son to infantile Batten disease but never lost her resolve against the monster that robbed her).
  • Even the strongest storms are followed by rays of sunlight, however fleeting.
  • People – really GOOD people – provide shelter from the storms when the rain beats down and the punishing winds grow unbearable.

I am incredibly grateful for the GOOD people in my life – the people who’ve dared to believe with us. Without them, we’d be lost.

Laura and Taylor

The Raindrops Danced

By Laura Edwards

Tonight, throughout most of the 30 minutes I spent chained to a recumbent bike at the gym, my eyes darted from the Kindle in my lap to the darkening sky through the windows – layers upon layers of deep blueberry blue and blackberry purple, like a frosted layer cake left out in the sun on a humid day. As I hobbled out the front door some time later, the orthopedic boot that has been my fashion statement for the past month holding my busted Achilles together like Scotch tape, the front desk attendant told me to stay dry.

As luck would have it, the first warm, fat drops of rain fell from that layer cake sky just as I walked out into the balmy night.

Normally, I would have sprinted the 50 feet to my car. I don’t like to get wet. My husband routinely teases me about my love for the outdoors and, conversely, my distaste for rain unless I’m safely out of it. Just two days ago, he watched with a smile from the door of the chapel where our friends were about to be married as I limped unevenly across the parking lot, my left foot in the boot and my right foot in a three-inch heel, a slippery Pashmina wrap slung over my shoulders and the world’s largest golf umbrella clasped in both hands.

As I pulled out of the gym parking lot, I received an unexpected visit from a decade-old memory of an afternoon at my grandparents’ house in Wake Forest. In the pictures that played on the projector screen in my mind, Grandma Kathryn chases an overalled-toddler version of Taylor around the front yard under a gray sky. Taylor manages to avoid our grandmother’s outstretched arms, only to be scooped up by John when she rounds the corner and runs right through his hiding place. He turns her upside down and tickles her, then sets her on her feet. And the game begins all over again.
A soft breeze rolls over the tops of the trees – a warning for rain. As the first drops cascade out of the sky and onto our waiting faces, I run for cover. Taylor runs to the porch and tugs at the handle of an umbrella three times her size. John takes the umbrella from her, opens it and wraps her tiny fingers around the shaft. Her cherub face breaks into a grin, and she takes off down the winding path to our grandmother’s garden, singing in the rain.
I smiled as I remembered this very real moment – a testament to my little sister’s ability to find beauty in every drop of rain. The image of Taylor skipping down that garden path reminded me of the words of Cindy Smith, a courageous mother who lost her son to the same disease that threatens to take my little sister away from me forever.
“Life is not waiting for the storm to pass. It’s learning to dance in the rain.”
As the spring rain poured from the sky, I rolled down my window. The raindrops danced on my outstretched arm as a smile danced across my face and love filled my heart.

Rain from a Blue Sky

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.