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.