Thanksgiving Without Food

Published: November 26, 2015 ~ 0

By Laura King Edwards

I’ve been in frequent touch with my friend, Ricki Lewis, since leaving a comment on her DNA Science blog nearly three years ago. Ricki, a science writer with a PhD in genetics and author of The Forever Fix: Gene Therapy and the Boy Who Saved It, has written about Taylor’s Tale and our fight against Batten disease many times. She supported me while I wrote my memoir, Run to the Light, serving as an early reader. Ricki and I have never met in person, but after reading my book, she knows more about my family and me than most people.

This week, Ricki emailed me to ask about my recent trip to a writers’ conference in Asheville, North Carolina, and to wish my family a happy Thanksgiving. “I wish Taylor could taste the food,” Ricki said. “But she can smell, right?” continue reading →

Giving Thanks, and A Walk to Remember

Published: November 26, 2014 ~ 4

By Laura Edwards

Thanksgiving, a national holiday characterized by gluttonous eating, rivalry games, parades, Black Friday specials and tryptophan hangovers, began as a simple gathering hundreds of years before the invention of football and shopping malls. At its core, Thanksgiving is “a day for giving thanks for the blessing of the harvest and the previous year” (Wikipedia).

It’s been the toughest 11 months of my sister Taylor’s fight against Batten disease since her diagnosis on a hot summer day more than eight years ago. Her first wheelchair arrived on my parents’ doorstep to kick off 2014, and my sister, who used to run 5Ks and rule wedding dance floors, can’t stand without assistance. She lives in a dark world, she can’t sing along to her favorite songs any longer, and she won’t get to taste the turkey at our family’s Thanksgiving dinner tomorrow.

But the fighter I know is still in there. She may struggle to stand when we move her from her wheelchair to her bed or shower seat, but last week, with her physical therapist Jessica at her side, she climbed the stairs at the local YMCA–and then she walked back down. Jessica said Taylor worked harder in that hour than most people work in an entire day, and I believe her. That’s just like my sister.

When Taylor was first diagnosed with Batten disease, I was convinced we’d save her life. I believed with all of my heart that “fatal” didn’t mean fatal for her.

Batten disease has taught me a lot in eight long years. But my sister has taught me more. Tonight, on the eve of another Thanksgiving Day with the people I love, I’m thankful for the wonderful years we’ve had together, in spite of the pain Batten has caused. And when I watch Taylor on this video, I know in my heart that I still believe. I know that no matter what the disease does to her body, her spirit is stronger.

Take that, Batten disease.

The Beacon

Published: November 26, 2013 ~ 2

By Laura Edwards

A cold rain is falling from a black sky. The slick roads are plastered with wet leaves that burned with the fiery crimson, yellow and orange of a North Carolina autumn for just a short while before an angry wind whisked them from their branches.

I’m not ready for winter, but it’s here, ugly and mad.

One cold, bright day last winter, I told my mom I needed to quit Taylor’s Tale for awhile. Remembering that moment now, I don’t know what I meant, and I’m not sure I ever really did. I uttered those words in the middle of a journey around an indoor track with no shortage of directional signs. But I’d still lost my way.

I never quit Taylor’s Tale, after all. Mom gave me an out, but I didn’t take it. Instead, I picked up my boxing gloves and threw myself back into the ring. I kept writing, and I kept fighting.

Capitol building

I thought Batten disease was killing me, but I was wrong. It’s killing my sister. And I can’t let it get away without a fight.

I stuck around, and since that day on the track, I’ve watched Taylor’s Tale partner with other non-profit organizations to help develop a possible treatment at the UNC Gene Therapy Center, endorse important legislation for the millions of Americans fighting a rare disease, speak to members of Congress and a regulatory committee of the National Institutes of Health (NIH), and tell stories that have reached the far corners of the globe.

Since that day on the track, we’ve earned a lot of victories, but Batten disease has kept winning, too. Last weekend, I ran Charlotte’s Thunder Road Half Marathon blindfolded to honor Taylor, who ran the Thunder Road 5K after losing her vision in 2008, and support the fight against Batten disease and other rare diseases. From the moment I decided to run the race blind, I dreamed of wrapping Taylor in a hug at the finish line. But my sister was in no condition to join us on the morning of the event. Thunder Road marked one of the most incredible experiences of my life, and I’ll never forget it. But hanging my medal around her neck at my house hours later and seeing her face light up was just as special.

In two days, I’ll see Taylor again for the Thanksgiving holiday. Batten disease has a powerful effect on a family; if you’re not careful, it can take everything that’s good in your life and rip it into little pieces. It’s the world’s worst diseases all rolled into one, and it’s been busy with my sister in 2013.

And yet…

I’m thankful.

I’m thankful for my time with my sister, whether it lasts 15 or 50 years. I can’t change the fact that my sister has Batten disease. I can hope that tomorrow won’t come, but I know it will, like the rush of water behind a dam that’s about to burst, or the licking flames of a fire that has already started to spread. And yet, I can recognize the beauty in her smile, the courage in her laugh and the warmth in her hug. I can accept each new day we’re given with Taylor as a day some people aren’t blessed enough to have with the people they love. I can feel encouraged by all of the progress that has been made because my sister’s story is powerful and people are good.

On my dark days, I can feel angry at Batten disease and know it’s okay to hate something that’s stealing somebody I love. I can channel that energy into saving lives. In that way, I’m thankful for the anger, too. My anger is always conquered by my love. And my love for Taylor is a bright beacon, lighting my way.

What are you thankful for?

Thankful

Published: November 21, 2012 ~ 0

By Laura Edwards

Fighting Batten disease has changed my perspective on life. It’s affected my system for assigning value to things, from those that can be bought and sold to those that cannot. Tonight, on the eve of another Thanksgiving Day, here are just some of the things for which I’m thankful.

Ice cream. You can get it in a carton, cup or cone. You can get it in almost any imaginable flavor. It always tastes good. It almost always makes a sad day less sad.

Two (mostly) healthy legs and feet, two functioning eyes and a great pair of running shoes. Together, they help me run for my little sister four to five days a week. Running is the best antidepressant for me. Without it, I may have lost my sanity a long time ago.

Beautiful places. When I stood on the edge of this magnificent valley in the North Cascades range of Washington state last year, I wondered aloud how anyone could ever possibly question that there is a God.

My West Highland white terrier, Daisy. I brought her home because I wanted something snuggly to love on at night. She’s given me that and so much more.

True friends. If I could claim nothing other than a few really good friends, I’d still be rich.

My Grandma Kathryn – one of the purest, kindest, most selfless people ever to walk the face of the earth. She taught me to love long walks on the beach and hush puppies with honey butter and the written word, but most importantly, she taught me to believe in myself. Tomorrow will likely be the last Thanksgiving we spend together.

My brother. Ten years ago, I would have sworn up and down that we’d never get along. We still don’t agree on everything, but who does? Stephen – I’m proud of you!

My parents. They gave me opportunities, but they also challenged me to want to be the best I could be. They taught me to reach for the space between unattainable perfection and self-respect. I owe at least some small slice of everything I have – everything I am – to them.

My husband, John – my best friend since our junior year of high school. My rock.

Moments of joy that burst out of the darkness of despair. Moments we want to hold onto forever.

A girl who taught the rest of us a lot about love. About courage. About never giving up – regardless of the odds.

The word ‘believe.’

This day. I don’t know what tomorrow holds, but I have today. And it is a gift.

A Season of Change

Published: November 2, 2009 ~ 0

By Laura Edwards

The red and gold hues of fall have become the dominant color in the Charlotte landscape in the few weeks I’ve been back home from our adventure out west. The nights are cooler, and the days are shorter. Last weekend, we headed up to Carrigan Farms north of town for a hayride and pumpkins straight from the pumpkin patch. And yesterday marked one of the most exciting days of the year for Taylor.

Halloween rivals Christmas for the title of “T’s Favorite Holiday,” and she never takes it lightly. The “Is it time to put on my costume?” questions started early yesterday morning and didn’t end until the answer transitioned to “yes.” She was a queen bee – an identify of her own creation and my favorite costume yet. She came bounding down the steps around 5:30 in her yellow and black striped tights, gold Mardi Gras beads, black leotard, glittery wings and fuzzy antennae that bounced with each step she took. Even the pouring rain wasn’t able to dampen her spirits, and we squeezed every last drop out of the 30-minute break in the rain to take her from door to door.

After Halloween, the rest of the year is a blur. Thanksgiving will be here in three weeks, and the malls will be decorated for Christmas shortly if not already. And then, before we know it, 2009 will be only a memory.

Soon it will be four years since our first fundraiser, and though research is in an infinitely better place than it was four years ago, the disease continues to haunt us where it hits hardest – at home. Despite her straight As and bright smiles and a spirit that even a trick-or-treat-trashing rain can’t touch, the disease is within her more than ever before. The brilliant autumn reds and golds – colors she can no longer see – mark yet another season of change.

Three years ago, I wondered if T’s strained night vision would keep her from trick-or-treating. Her vision has left her now, though – and it is the least of my worries. How much longer, I wonder, will she be able to walk the neighborhood streets and ring doorbells of her own power?

The leaves are falling in earnest now, and soon, only bare branches will grace the backdrop of endless sky. And after the last leaf has fallen, and the nights have turned bitter cold, I will be left only with the one word that has carried me through these haunted years: BELIEVE.