In July 2014, I began writing a long love letter to my sister, Taylor, almost eight years to the day after she was diagnosed with infantile Batten disease. The memoir is a story of love, loss and survival. It’s a story of what it means to believe.
Let us run with perseverance the race that is marked out for us. ~Hebrews 12:1
This weekend I wrote the final chapter. Of course there’s more work to be done, but when I finished writing, I typed two words: “The End.” I know those words won’t survive the editing process, but I typed them anyway. I’d earned them, I decided.
I wrote and revised about 300 pages in 10 months while working full-time, running races around the country and supporting Taylor’s Tale, the non-profit organization I co-founded in my sister’s honor. It took a lot of hard work and a great support team (you know who you are). I wrote the final 15,000 words in the month of May – a literal sprint to the finish. I should be ecstatic about crossing this first of several finish lines.
But as I wrote the last scene on my patio yesterday, I found myself blinking back tears in the bright sunshine. At first I thought the scene I was writing had made me cry. Then I realized I was mourning the end of the journey – a journey that’s given me the gift of going back to places where my little sister can still smile for the camera and sing her favorite songs and chase fireflies across the grass. In the past 10 months, I’ve mined old photos and journals and the depths of my soul to relive moments with Taylor that I cherish more today knowing my beautiful sister will never have those things again.
Batten disease steals the things that are most precious to us because they are so simple and true.
My sister’s life is and has always been a gift.
I can’t wait to share her beauty with the world.