Giving Thanks, and A Walk to Remember

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.

4 Comments On “Giving Thanks, and A Walk to Remember

  1. Ricki Lewis Reply

    Thanks Laura. I’m giving a talk to Wall Street investors on Monday (about gene therapy) and am going to mention Taylor’s fight. You are the best sister in the world.

    1. Member Laura King Edwards Reply

      Thank you for including Taylor’s story in your talk and for your continued support. Thanks also for your kind words. I think Taylor is the best sister in the world. 🙂

      Best of luck! I know you’ll do a fabulous job.

  2. Scoggin Jones Reply

    Laura, Thank you for your heartfelt posts about your sister. It is so touching to read how Taylor, 16 years younger than you, teaches you about life and what really matters. You are right – Taylor’s spirit is her strength. Please give all your family a hug for me.

    1. Member Laura King Edwards Reply

      Hi Scoggin,
      Taylor has taught me so many important lessons. My sister learned the meaning of courage at a young age, and she’s always been wise beyond her years. I will give everyone a hug for you! Thank you for reading and for your continued support.

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