When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
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?” continue reading →
Taylor came home today. She spent six nights in Levine Children’s Hospital. On Saturday, she had a surgical procedure that represents a milestone. It’s not a happy milestone, like losing a front tooth or outgrowing training wheels or getting a first kiss. Families fighting a life-threatening disease have “milestones” they hope they’ll never reach.
Some things about the surgery have been “good.” My sister always had a beautiful complexion. She’ll be 16 in August; at her age, I think I would have given just about anything to have skin like hers. Since Saturday morning, the color has eased back into Taylor’s face, and the dark circles that ringed her bottomless eyes have begun to fade. And though it will take some time before she regains her strength and we all get used to our new “normal,” I saw my sister’s fire flicker not long after she returned to the small hospital room that served as her home for almost a week.
There are good people in this world, as I’m often reminded. Good people are good medicine. Thank you to everyone who reached out to me, via this blog or social media or email or phone or the old-fashioned way, to let me know that my sister is in their thoughts and prayers. Thank you to Dawn, who takes care of Taylor because it’s her job but also because she loves my sister. Thank you to Linda, a good family friend, who read “Green Eggs and Ham” to Taylor on a bright, sunny afternoon when my sister couldn’t get outside to feel the sun’s rays on her skin. Linda’s funny voices – different for every character in the book – made my sister laugh more than I’ve heard in a long time. Thank you to Jill, Taylor’s vision teacher for many years, who spent time with her as she recovered and once gave her the gift of words after her world faded to black. Thank you to Charlotte, my sister’s best friend from Fletcher and an angel. I didn’t cry on Saturday morning when I watched them wheel my sister back to the operating room, but I held back tears when Charlotte knelt by my sister’s bed and placed a framed photo from their fourth grade trip to the Radio Disney station in my sister’s hands.
Charlotte will be a junior in high school next year. Taylor should be a rising junior in high school, too. She should be learning to drive. She should be walking and running, around a track or on a field or after boys. She should be enjoying her summer vacation.
I’ve watched my sister struggle with a learning disability and lose her vision. I’ve watched her suffer from seizures. I’ve watched her fine motor coordination dwindle. I’ve watched her run 5Ks without the gift of sight 10 short months after harrowing brain surgery on the other side of the continent. I’ve watched her run her last race. I’ve watched her lose her ability to walk. I’ve heard her sing her last notes. I’ve heard her say “I love you” for the last time. So why is this milestone so hard to bear?
Our fight has never been so difficult, but I’m as motivated as ever to beat Batten disease and other rare diseases. The science exists to build a better future – soon – for people like Taylor. Learn more about our efforts here.
Taylor was admitted to Levine Children’s Hospital on Tuesday afternoon. When you’re fighting Batten disease, nothing is ever easy. But we’re all facing a crisis this week.
My mom used to be the queen of nighttime volunteer meetings, and growing up, we ate a lot of my dad’s grilled cheese sandwiches and Papa John’s pizzas for dinner. Taylor taught herself to read when she was 3, and I’ll never forget the day she read a picture book to me in the time that it took Dad to run into the neighborhood Papa John’s and pick up a pizza while we waited in the car.
I babysat my little sister more times than I can count. We spent a lot of hours snuggling on the couch in my parents’ basement, eating slices of plain cheese pizza, slurping Diet Coke through straws and devouring stacks of Disney movies on DVD. After I got married, we had a lot of pizza nights at my house. Mom and Dad packed a bag for her if they knew they’d be late, and when they finally tiptoed through the back door, they’d find Taylor curled up asleep with my dog, Daisy, dressed in pink pajamas and fuzzy pink socks.
When Taylor got older, she befriended Callie, who’s closer to my age and met our mom through another one of the community organizations she served. We had girls’ nights at Callie’s – Taylor, Mom, Callie and I. Callie always had pizza dough, and Taylor loved to make homemade pizza at Callie’s. She loved to feel the cool, sticky dough between her fingers. One night, we made chocolate cake to celebrate Taylor’s half birthday, even though it was almost a month away. My sister decorated the cake with lots of rainbow snowflakes, sprinkles and icing. Her vision was starting to fade by then, and that cake looked a lot like a Jackson Pollock painting, but I thought it was beautiful. We played Taylor’s favorite music and moved the kitchen chairs to dance, and the dogs ran between our legs. After dinner, we sang to my sister, even though it was only her half birthday. Callie didn’t have any birthday candles, so Taylor blew out a tea light in the middle of the Jackson Pollock cake.
It’s been years since my sister saw a sunrise, and she won’t walk without assistance again. So why is it so hard for me to accept that she’ll never eat another slice of pizza or a piece of birthday cake?