I miss my sister.
Many people in the rare disease community are surprised, even shocked, to learn that I have a full-time job — which, along with my 16-month-old son and writing books and running races, rounds out my life outside of Batten disease.
I worked that job from home one day recently while rehabbing the ankle I injured on New Year’s Day. I have a wonderful home office, a loft space flooded with natural light that dances on the wall full of books in the hours after sunrise. It’s sparsely decorated, with only a simple writing desk and chair and a door leading out to the second-floor wraparound porch and the framed diplomas and awards and stories that adorn the walls.
The largest of those stories is a Charlotte, North Carolina magazine article I paid a custom frame shop a fortune to protect, mostly because I love the photo in the first spread. Captured in the guest room of my first home an eternity ago, it shows my sister, Taylor. Then 9, she had a head full of long, strawberry blond hair and bottomless, beautiful eyes that were already failing their owner even then.
Though timed to promote a gala fundraiser my friends from work were spearheading, the story mostly talked about my relationship with Taylor and my conviction, at the bullheaded age of 25, that a fledgling charity with no paid staff and an impossible marathon of a goal would save my sister’s life. From the humble beginnings of Taylor’s Tale, the nonprofit organization I helped found in a Charlotte living room, I told the world my sister would be different. She’d change the universally fatal narrative of Batten disease by surviving.
Of course, those days happened in another season and another lifetime. If you get right down to it, they happened to a whole other person. A person packed with hope. A person who hadn’t been scarred by loss.
It’s true that I’ve struggled since my sister died. Curiously, life without Taylor now hurts a lot worse than in the six months after her death, when I had a new baby and a new book and a wound so fresh it hadn’t really started to sting.
That doesn’t mean I’ve stopped fighting. In fact, though the world doesn’t hear from Taylor’s Tale as often since I write fewer blogs and social media posts, we’ve stayed busy. Oh, how we’ve stayed busy. And now, we have another mountain to climb, one last push to place a big, shiny bow on the gift we’ve worked so long to give to children like Taylor: a treatment. The treatment my own sister didn’t have that hot July day in 2006. The day a geneticist said to my stunned parents, “Take her home and love her. Make happy memories. There’s nothing we can do.”
I don’t make New Year’s resolutions, but I think maybe 2020 will be the year I really try to focus on knowing the difference between minor setbacks and major hurdles. On having the conviction and the drive to keep going, injured ankle, sleepless brain, exhausted spirit and all.
Because we can’t quit now. We have to run all the way to that finish line.
For Taylor’s sake.
Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Batten disease.
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