Thanksgiving Without Food

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?”

I’ve always appreciated Ricki’s honesty, but also her ability to make me think. And after I read her message, I spent a lot of time thinking about what she’d said. After all, it’s been 17 months since my sister last swallowed food. What is Thanksgiving – a holiday focused on food – to someone who can’t eat?

Tomorrow, after running a local Turkey Trot race with my brother in my sister’s honor, I’ll gorge myself on turkey and ham and sausage stuffing and sweet potato and broccoli casseroles before sinking onto the couch in a tryptophan-induced coma to watch my hometown Panthers play a football game. But when our family sits down at the dining room table, Taylor will sit slightly away from us in her wheelchair. She won’t eat with us, because our Thanksgiving meal won’t be served in sync with her regular feeds.

Including my sister in our conversation will be difficult, too, because Taylor hasn’t been able to talk since the summer of 2014. In fact, her last words were “I’m hungry,” hours before the Levine Children’s Hospital staff operated on her to insert the feeding tube that provides all of her nutrition now. When it comes to forgetting about my mute sister in the flow of a conversation, I’m as guilty as anyone.

Taylor in fallI’m thankful for Ricki’s note, because maybe now, I’ll be more mindful of the blessings we have when I see my family tomorrow. I’ll try harder to include Taylor in the joy of the day. Thanksgiving isn’t supposed to be about a meal, anyway. Food is at the center of the celebration, but it’s not the food we’re celebrating. Because while the holiday commemorates the Pilgrims’ harvest, Thanksgiving in modern America should be about giving thanks for all life’s fortunes. And I do feel so very fortunate, in spite of Batten disease.

Taylor won’t be able to taste our Thanksgiving feast tomorrow. But she’ll smell the aromas of roasted meat and spiced vegetables and fresh-baked bread and hear the voices and laughter of the people who love her and feel the touch of our skin when we lean in to give her a hug. And I have to believe that somewhere, deep down, she’ll be smiling.

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