Want to live longer? Then you’d better eat a healthy diet, exercise regularly, refrain from smoking, get adequate sleep and control stress. You’d also better hope you don’t have a serious illness lurking in your genes, if it’s genetic, or just around the corner, if it’s acquired. Because when it comes to something like Batten disease, for example, you can just about throw all of that other stuff out the window. It undoubtedly helps, but in the end, it’s simply an unworthy opponent for the group of disorders officially known as neuronal ceroid lipofuscinosis – the 28 letters of hell.
My parents have tried just about everything to keep Taylor as healthy as possible – from physical and occupational therapy to a modified diet, more medications than I can keep straight and even experimental brain surgery. I have no idea how much of an effect any of it has had on her Batten disease. But there is one thing of which I’m absolutely certain:
I know in my heart that when my little sister laughs, she grows stronger. Because a dose of laughter is good for the soul.
Lauren, a member of the Taylor’s Tale board and a friend and colleague of mine who has known Taylor since 2007, watched my sister last night so my parents could go to the NC State – Louisville bowl game being played here in Charlotte along with everyone else in my family who is not a Carolina fan (so, basically everyone but me). Partway through the evening, John and I found ourselves in the area and decided to stop by my parents’ house for a quick visit. When I walked into their kitchen and saw Taylor and Lauren watching a Disney movie on the sofa in the next room, I immediately noticed the smile plastered across my little sister’s face. Today, Lauren told me that Taylor spent much of the night laughing – at her, mostly – particularly whenever she sang along with the songs in The Lion King. At one point, Lauren asked Taylor if she liked her singing, to which she replied, “No!!!” and laughed hysterically. So of course, Lauren continued to sing, and Taylor continued to laugh.
I crack up over the things that Taylor finds funny. Sometimes I think she has a twisted sense of humor, and I love it. It’s part of her spunk. For example, she regularly says I stink and calls me “fat butt” – words always accompanied by a giggle or at least a sideways grin. In fact, my mom once told me that “Laura stinks” is generally the first phrase out of Taylor’s mouth each morning:
Mom/Dad: “Good morning, Miss Taylor! Ready for some breakfast?”
Taylor (eyes still half closed): “Laura stinks!”
I average a couple of long showers a day; when I still lived at home, my dad often liked to remind me how I ran up his water bill. So I’m fairly certain that I don’t stink – at least most of the time. And I’m no stick, but I’m a workout fanatic and have never had anything resembling a “fat butt,” I’m happy to say. I’m far from perfect, but I’m pretty confident in the personal hygiene and weight departments. Coming from anyone else, the above accusations would probably get on my nerves more than anything. But coming from my little sister, they’re priceless. Because in my eyes, at least, they’re glimmers of the spunk that helped my sister go toe-to-toe with our brother, 11 years her senior, even when she was a toddler; the spunk that helps her get the best of a sister old enough to be her mother; the spunk that I believe is the basis of her ability to say “Screw you” to Batten disease, day after day – even when the adults around her can’t bring themselves to do so.