Tonight, John left the house to pick up takeout for dinner only to call moments later to tell me I should go downstairs and look out the window. Three days of rain had just ended with a break in the clouds and the blue-orange glow of an after-rain sunset. And across the street, rising up out of the houses and trees to reach for the heavens, was a rainbow. I stood just inside the open front door and gazed at it for a long while until Daisy appeared, darted through my legs and made a mad dash for the girls who were puddle-jumping in the cul-de-sac, breaking the serenity of the moment.
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.
John and I went bowling with Taylor and my parents tonight. T is the undisputed Wii bowling champion around here, but I’d never seen her hold a six-pound ball and roll it at real-life pins. I’m not too shy to say here that she tied me tonight, fair and square. I led her for most of the night, but she drew even with a strike – a strike! in the 10th frame. Between turns, she chattered about two different excursions to the mall last night and today on a quest for a pink skirt at Justice. At one point, she described how a woman at the mall stumbled and fell, at which another shopper burst out laughing. On the side, my mom explained that the woman who fell was handicapped, and that though T had no way of knowing that, my mom had looked on incredulously at the woman who laughed at her. Compassion, it seems, is not a universal trait.
At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: “When not interfered with by outside influences, everything nature does, is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?” The audience was stilled by the query.
The father continued, “I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.” Then, he told the following story:
Everywhere, there are reminders of the passage of time: the sight of the setting sun at the end of a mild day on which the spring buds stretched their arms and reached for the sky, just six days after our area saw heavy snowfall; the excitement with which my little brother spoke of the major concentration he’s just chosen on the eve of his senior year in college, though I am still often shocked to stand beside him and realize once again that he has grown taller than I; the high school classmate who walked past me at SouthPark Mall tonight – with several children in tow; Taylor’s hair – which, as it grows, marks the time since it was shaved in an operating room far away from home, in the Pacific Northwest.
I had a few minutes alone while I waited for John in the mall earlier this evening, so I set my bags down and found a spot on the side of the fountain, pulling my knees up under my chin to watch the water rise and fall. The moment immediately brought back memories of a tradition long ago, one I shared with my dad when I was still an only child. Mom frequently had volunteer meetings on weeknights, so after eating grilled cheese sandwiches or Burger King for dinner, Dad and I would head to the Baskin Robbins in SouthPark to get ice cream cones (mint chocolate chip in a sugar cone for me) and throw pennies into the fountain until Dad’s pockets were empty. This tradition has stuck with me long past the extinction of that particular Baskin Robbins; in fact, the on-again, off-again novel I started writing in college has a whole scene – a whole chapter, really – in which the book’s main character and her mother, who has late-stage brain cancer, share a picnic by a similar fountain in a mall in Vermont.
Tonight, watching the fountain seemed to make time stand still. But when I lifted my eyes and invited the rest of my surroundings back into my consciousness, I was reminded of how much the mall of my childhood has changed. Gone are Sears and Hecht’s and the old movie theater, supplanted by Nordstrom and Neiman Marcus and Tiffany & Co. Once the place where I could take my high school soccer teammates out for Sbarro’s pizza after practice – and still in our shin guards – it now touts itself as “the Carolinas’ premier shopping destination,” and I suspect that our grass and sweat-stained shin guards would get dirty looks.
While SouthPark’s been busy remaking itself, my little sister, who was born during the days of those beloved after-practice pizza outings, is growing up. Once happy with Gymboree, then The Children’s Place, she now prefers to get her clothes from Justice and, during a short phase that seems to have ended, Abercrombie. My mom recently told me a story of how she had T and her girlfriends in the car one afternoon and offered to put on Radio Disney, only to get cries of protest and requests to play Kiss 95.1 (a decidedly more “grown-up” selection, though according to the station’s website, Disney creation Taylor Swift did make the High 5 today). And though she simply giggles and grins, then turns her head when you ask for details, it seems that T and her friends have officially discovered boys this year. One night recently while Dad was out of town, John and I took Mom and T out to dinner at McAlister’s. About halfway through the meal, T started talking about one of the boys in her class. Mom told her to show us what she’d been carrying around in her pocket, to which T responded by producing a carefully folded scrap of paper with a phone number and the words “Scott’s Home Phone.” She’d carried it around faithfully all day. That was almost a month ago, and in the time since, rarely have I seen her more animated than she was right then.
Though the changes in T have made for many happy memories like that night at McAlister’s, they, too, signal the passage of time – a scary prospect for a family like ours. I would do anything to be able to press ‘pause’ and take the gift of additional time to ensure that T won’t ever really have to stop growing up. But I can’t do that. The sun has already set on this day. Tomorrow is another day and another opportunity to not only press ‘pause’ – which could only be a temporary solution after all – but to rewrite the entire script. I will be at MexiCafé tomorrow afternoon for Tip-off for Taylor as part of the latest attempt to do just that. And tomorrow evening, after everyone has gone home, one team has lost and the other has won, I will no doubt once again find myself willing a blank screen to be filled with words that give meaning – and belief – to our journey. And just for good measure, you’d better believe I tossed a penny into that fountain.
Whether you bleed light blue, dark blue or some other color of the sporting rainbow, I hope you’ll consider joining Taylor’s Tale for Tip-off for Taylor #2 and the Duke-Carolina men’s basketball rematch on Sunday, March 8. The game starts at 4 p.m., but doors open at 3. The game itself may decide the ACC regular season title, but you can help us score a different kind of victory by supporting our search for a cure.
More than 150 fans of Carolina and NC State came together last month at Blackfinn American Saloon for the first-ever Tip-off for Taylor. This time, our efforts take us to MexiCafé, a great restaurant/bar nestled between the Visulite Theater and NoFo on Elizabeth Ave near uptown Charlotte. Join us for drink specials, raffle prizes and piñata pummeling. Proceeds from the $15 entry fee and $1 raffle/piñata opportunities will help talented Batten disease researchers in their quest for a cure.
For just $15, you’ll get:
- 1 free drink
- $2 beers and house margaritas
- $5 Duke and UNC specialty drinks, Bloody Marys, Bloody Marias and Mimosas
- $1 raffle opportunities to break the piñata and win prizes
Taylor’s Tale t-shirts and car magnets will also be available for an additional donation, so remember to bring extra cash if you’re interested!
To learn more or to RSVP (not required but definitely a plus!), please contact Megan Talley at firstname.lastname@example.org. To learn more about past and future Taylor’s Tale events as well as other ways to support our search for the cure, visit http://www.taylorstale.org/.
Mom is back from San Diego; she arrived on the red eye this morning. I have many things to report from her journey out west and will do so in time. Tonight, though, I just want to share some reflections from her time with Daniel Kerner, who is nine years old and has late infantile NCL, and Daniel’s mother, Joanna. Together, Daniel and Taylor form the bookends of the historic clinical trial in Portland, OR. Daniel was number one; Taylor was the sixth and final participant. Joanna and my mom have talked with one another countless times across cyberspace and telephone wires, forever connected by their children’s at once great hope and great sacrifice that was their experience in Portland, but they had never met in person. Since the day I was first contacted by another family stricken by Batten disease, as ours is, I have struggled to put words to the relationship that is forged between us all, even if the road between us stretches thousands of miles, as in the case of the Kings and the Kerners. However, Joanna’s most recent CaringBridge journal post recounting the time she and Daniel spent with my mom described it beautifully, so I emailed Joanna and asked her if she would share her words with me. She said yes, so I’ll share them with you now:
“Meeting Sharon King, Taylor’s mom, for the first time was immediately comfortable and welcoming. There was no way that I would not bring Daniel to meet Sharon. We exchanged gifts for the kids; Taylor sent Daniel a UNC baseball cap signed by the Women’s Basketball coach Sylvia Hatchell, and Daniel gave Taylor his newly edited Braille book entitled Love. Someday, Daniel and Taylor will have an opportunity to meet in person. Until then, they will have a coast-to-coast friendship through their moms. There is a special bond the moms share that is on a level deeper than any peer friendships. We are woven together into a different cloth of life that creates a strong and compassionate quilt, assembled painfully through heartbreak and upheaval, grief and acceptance, strength and perseverance. A quilt, we hope, big and strong enough to smother the dragon and deliver our children back to their childhood dreams.”
As I write these words from my living room on the East Coast, Daniel is on the West Coast, probably sharing the company of his parents and his older brother and sister, perhaps eating dinner with them, no doubt making happy memories (because they, with the exception of our constant search for the cure, are the central purpose of every day we are given). Thousands of miles away, I am searching for answers, in the world out there and within my heart. I am fighting for Taylor. I am fighting for Daniel.
This week, my mom is in San Diego for the Lysosomal Disease Network World Congress (Batten Disease is classified as a lysosomal storage disease). One of the presenters on the program is Sandra Hofmann, MD, PhD, whose infantile NCL project Taylor’s Tale has funded since mid-2007. Very few families attend this particular conference because it is so technical, but this is my mom’s second go-round, even though Taylor was diagnosed less than three years ago. That’s my mom – she won’t accept precedent, and she won’t miss a single opportunity to give kids like Taylor an edge. My mom and I joke that we stick out like sore thumbs at these conferences (I majored in English in college, and my mom majored in music), but we hold our own. We simply have to. We can’t offer anything in the lab, but what we can do is advocate for children with Batten disease – and all children with rare diseases – and understand enough of the research landscape to maximize our ability to support it with our fundraising and awareness efforts.
All of us – children like Taylor and families like mine and our friends and loved ones – are currently stuck in a car traveling down a single highway. We’ve been told what lies at the end of the highway by those who’ve gone before us – that this is a fatal disease and that the best we can do is provide comfort to those who suffer from it – and make as many happy memories – as much for us as for them – as we can. But I have a little bit of my mom in me, and I don’t like that itinerary. I don’t like the idea of a highway without exits and a car that travels at its own speed and doesn’t bother to tell me when it’s going to speed up or slow down.
I can’t have a new car, though – T’s genes are what they are. So the best I can do is keep my eyes open for an exit. I don’t know if there is one exit or if there are many, if they are marked or if we will have to rely more on our instincts. I don’t know if the exit will be created by enzyme replacement therapy, or gene therapy, or stem cell transplantation or something else – or if there will be more than one exit – but I know that something’s out there, and that we’re close, much closer than when I first got shoved into the car by invisible hands that day in the summer of ’06. See, though I may spend each and every day working toward a greater understanding of the science, I’m still a creative, and I don’t deal in black and white. I don’t deal in absolutes, and I like to throw a little color in there whenever I can. It may take a little imagination to help find the exit(s), but maybe that’s my role – I’ll leave the miracle-making to the ones in the lab. I don’t like the route that was chosen for us. And I’m not backing down.
Google the phrase ‘Cellar Door,’ and you’ll get a range of responses. The Wikipedia entry on the subject explains that J.R.R. Tolkien first described the sound the words make together as “intrinsically beautiful.” Say the phrase out loud, and you’ll understand. ‘Cellar Door,’ though it is the name of a physical object that is anything but beautiful, is just that.
‘Laughter’ spelled doesn’t look as pretty as it sounds. And if one is laughed at rather than laughs with, ‘laughter’ is not pleasing at all. But laughter, when it comes in its unbridled form from a child who has plucked happiness from a singular moment and embraced it in a hug, is beautiful. I love almost nothing more than listening to Taylor laugh. In those moments, ‘laughter’ is, to again borrow from Tolkien, “more beautiful than the sky.”
Yesterday, we went to Chapel Hill for the UNC – Georgia Tech women’s basketball game. Taylor got to meet UNC’s Coach Sylvia Hatchell beforehand and enjoyed the game – cheering louder than everyone else in the arena and at all the right times – from a seat right by the court. For my sister, though, her happiest moments came when Rameses, the UNC mascot, came to visit with her. The road from Charlotte to Chapel Hill stretches 150 miles, but I would have driven 15,000 to hear her laughter and see it in her eyes and in her smile in those fleeting moments.
Taylor has taught me a lot about what is beautiful, much of which comes from knowing how to appreciate the living elements in things, whether they be the whimsical notes of a cello or the whisper of the ocean as it laps against the shore. The cello and the ocean are also visually beautiful, but to recognize the beauty of their voices is to understand them more deeply. I have always loved the ocean, but I never truly heard its beauty until after my little sister had gone blind, when I went on a walk one early evening last summer and closed my eyes as the cool water washed over the tops of my feet and fell back again, over and over. I missed the sunset, but I didn’t feel as though I had lost anything at all. Taylor will never see another sunset in her lifetime, but she will forever teach me new things about the hues of golds and reds that grace the sky.