She doesn’t know it, but the best gift T could possibly get for her 12th birthday is a cure. Batten disease won’t be cured by this Thursday – I’m a realist – but real progress can be made. As a friend of Taylor’s Tale, a friend of mine, a friend of T or a friend of our family, please help us save my sister’s life in honor of her special day. Any amount will go a long way in the world of Batten disease. To make a secure online donation, simply click on the link below to be taken to the donation page on our website. Thank you for helping us write the happy ending for children like my beloved little sister.
I was driving to the office this morning, counting the hours of good sleep I’ve gotten lately (very few) and wishing I was still in my bed. But then, rush hour traffic graced me with yet another red light, and as I sat there in my car, I suddenly stopped thinking about when I would get to my email and discovered the way the leaves of the big, old trees, silent sentries watching over Providence Road, filtered the morning sunlight. And I knew then that if I was still asleep, I would have missed that.
Taylor, Mom and I are on the South Carolina coast enjoying a few days’ respite.
I used to wonder if there were more Bargain Beachwears and cheesy Putt-Putts than grains of sand at this oceanic collection of high-rise condos and tourist traps. My grandfather loved this place because he was a golfer, and the Grand Strand is a golfer’s paradise. In a single day, you can play nine holes, eat lunch and dessert at Greg Norman’s restaurant, play the back nine and eat overpriced seafood at a different restaurant for dinner, no problem. My grandfather passed away one chilly weekend in early December when I was fifteen and playing in a soccer tournament in Athens, Georgia, but we still come down here. If we come by way of SC 9 (I call it “Back Road 9,” and not affectionately, either), we pass by Tony’s Restaurant, which serves great Italian fare and is not a chain like its neighbor, Carrabba’s. Granddaddy hated the smell of marinara sauce and wouldn’t have pizza or pasta in his house, even when my dad and his brothers and sister were growing up. But I love Italian, so every summer when we came down, Granddaddy would make a reservation for dinner at Tony’s one night. It was a little thing, but it made me feel special nonetheless.
We’ve been here almost 24 hours now, and the worries we left behind in Charlotte already feel a world away. We made it out to the beach late-morning and just sat watching the ocean with our toes in the cool sand for awhile. Then, we played catch until T announced that she was ready for lunch. She’s pretty good at catch – you just have to give her a heads up before you throw the ball and talk to her before she throws it back so she can locate you. When the girls went upstairs, I went for a run on my own. The people are more scattered this time of year, so the beach doesn’t resemble a mosh pit. I was able to find a good lane right above the water line, where the sand’s only slightly wet and not too soft, and after a few minutes, I turned off my iPod so I could listen to the waves and the occasional seagull. It was the most therapeutic run I’ve had in weeks.
Though I packed enough clothes to stay two weeks without ever doing a load of laundry, I forgot some key items – I always do – so after watching my Heels get a decisive win in the first round of the NCAA tournament sans ACC POY Ty Lawson (my mom, who doesn’t follow sports at all, now calls him “The Toe”), I decided to walk up to the CVS on the main road. Mom wanted to get a walk in, so we convinced T to tag along by promising that she could pick something out once we got there. We walked three abreast to the drugstore and perused the aisles, discussing the merits of Maybelline vs. L’Oreal mascara and ways to get my feet sandal-ready (soccer and running take a toll on my feet, which aren’t pretty to begin with). Meanwhile, T decided she needed a mirror for her purse and lip gloss. On the way home, we didn’t make it one block before T decided she just couldn’t wait to apply her new lip gloss, to which I pointed out to Mom that it was a good thing at least one of her girls turned out girly! The only thing I applied to my lips at age ten was Chapstick.
So here we are now, enjoying an excitement-free night in the condo. T’s retreated to her room to watch a DVD, Mom’s prepping for T’s upcoming school presentation on Helen Keller, and I’m glued to the TV for the night games (currently, I’m watching Clemson lose to Michigan). I realized a long time ago that I don’t need the kind of manufactured fun found in excess at North Myrtle Beach to, well, have fun. The last couple of years of our lives have only reinforced that.
I’ll always try to be honest here – so I’ll say that I live in constant fear of what tomorrow may bring (or rather, what Batten disease may bring tomorrow). So, just as countless others who, like me, dearly love someone who is facing a life-threatening disease, I have many things that I want to do with my sister, and I always feel as though I can’t do them quickly enough. My sister once said she wanted to go to Hawaii; I want to take her to Hawaii. She is a Disney fanatic; we took her to Disney World before she was diagnosed with Batten disease, when we still believed she was only losing her vision; she wants to see the Jonas Brothers on their world tour; I am disappointed that they are not coming to Charlotte. But what I have to remember – what all of us have to remember – is the joy we can extract from the simplest of activities, like our impromptu game of catch on the beach or our girls’ night at CVS. As much as I want T to have happy memories, I’m not convinced that we have to have countless so-called exciting adventures for that to be possible. I want her to remember the fun time we all shared at Disney World, but I also want her to remember – and I want to remember as well – the times we’ve spent snuggling on the couch or sharing an $11 cheese pizza, drinking Diet Cokes through straws and talking about boys and clothes, as we did when I took her on a “date” one night week before last. Even if we could afford all of the adventures, sometimes I just want to enjoy my sister’s presence without it being overshadowed by the experience or the landscape around us. My grandparents took me on an amazing trip to New York City when I was eight years old; we stayed in the Hilton, rode in a stretch limo all over Manhattan, went to fancy restaurants and museums and the World Trade Center and FAO Schwartz, but that trip is not what I remember most about my relationship with my Granddaddy Parks. No, what I remember the most is watching Winnie-the-Pooh together in the TV room just down the hall from where I sit now – and those dinners at Tony’s.