My junior year of college at UNC, I took a course in children’s and young adult fiction writing. For one assignment, my classmates and I had to write the first chapter of a hypothetical young adult novel. We had the whole semester, but a week before the due date, I still didn’t have a shred of an idea in my head. Finally, I sat down at my desk nine hours before I’d have to slide my completed pages under the teacher’s office door.
While my roommates slept in our four-bedroom apartment, I invented a 17-year-old heroine, a Southerner struggling to adjust to her new home in snowy Vermont. I gave her a little brother who loved hot dogs and macaroni and a dad with kind eyes and a mother with an inoperable brain tumor.
I still don’t know where any of that came from. But when I skimmed the chapter as I raced to turn it in the following morning, I liked it so much that I realized I couldn’t let those characters go. That’s why, as a senior, I enrolled in a year-long independent study, turning out a new chapter and tucking it under that same teacher’s office door every Monday.
I know how the story ends, but I never managed to get it all down on paper. I graduated 160 pages into the manuscript — a good 100 pages short — and suddenly, I didn’t have time for creative writing. On top of holding down a full-time job, I freelanced for The Charlotte Observer and coached a girls’ traveling soccer team and planned my wedding. I promised myself I’d give my characters the ending they deserved as soon as I got home from the honeymoon.
But I’d scarcely had time to unpack my suitcase when we received Taylor’s Batten disease diagnosis in the summer of 2006. I’d put eight months into writing about a fictional family’s battle with a fatal affliction. Now, I was living in a real version of the hell I’d invented.
I still haven’t finished the novel.
For eight years, I didn’t think about writing a book again. I couldn’t stand the idea of beginning something new when I’d failed at my first attempt. I couldn’t bear the thought of writing about terminal brain cancer while my little sister fought a fatal brain disease. So instead, I started my first blog in January 2007, six months after the diagnosis. I wrote every chance I got for my hospital marketing job. And I fought like crazy to save Taylor’s life.
Then, in the summer of 2014, I felt the urge again. I started another book. And this time, I didn’t stop. Ten months later, I’d completed Run to the Light. It’s a 310-page love letter to my sister, and it’s the most important story I’ll ever write.
I’ve wanted to be an author since before I started kindergarten. When I got the Oracle news last month, my husband said, “This means you’ll be a published author!” I knew he was right, but in the next moment, I remembered why I’d written the story in the first place. I thought about how Batten disease had robbed Taylor of the chance to achieve her dreams, and suddenly, achieving my own didn’t feel quite as wonderful.
My sister just returned home after nine days in the hospital. Batten disease is ugly and cruel, and I hate watching Taylor suffer. It’s hard to see posts on social media about her friends from school, who are opening college acceptance letters and making spring break trip plans and getting dates to the senior prom. Taylor should have those things, too. This should be her time. Instead, Batten disease is winning this terrible war.
I didn’t see Taylor smile or laugh while she lay in that hospital bed. I worried that we wouldn’t get her back. But we did, because she’s my sister – the toughest, bravest person I’ve ever met.
Taylor won’t get to achieve the dreams she had as a little girl. Deep down, I’ve known that for a long time. But tonight, seeing my sister in her wheelchair, at home where she belongs, counted as a victory over Batten disease after the lows of the past nine days. As I pulled her close for a hug, I thought about how she taught me to see the best in even the worst situations. And that’s when I knew that that moment was its own kind of dream.