Things I'm Thankful for, Part III

I'm feeling bad that I didn't post an entry for this series last night. John and I went to see a movie and afterward stayed up late making a pumpkin spice roll for Thanksgiving dessert, and it totally slipped my mind. So, technically I need to post twice today to make up for yesterday. However, I'm going to let myself off the hook just this once, because I'm anxious to get over to my parents' house and still have a ham to cook. I also ran the Charlotte SouthPark Turkey Trot 8K with my brother, Stephen, this morning in Taylor's honor and am badly in need of a shower.

So with that said, I think that today, I am most thankful for my family and that God gave me this day to enjoy with them. I am thankful that I have the most wonderful husband in the world who is also my best friend, the best parents - who have made so many sacrifices for me and have given me so much - the best brother and sister a girl could ask for and grandparents with whom I've made more happy memories than I could ever begin to count. I am thankful for all of the other relatives and friends I will not see today. I am thankful that I am, for the most part, healthy and have the strength and the will to fight for my sister's life. I am thankful for the moments when my heart is filled with hope. In those moments, a small part of me believes that I will spend many more Thanksgivings with Taylor. And in those moments, I gather enough strength to go on for another day.

Happy Thanksgiving, and much love to all of my family and friends and everyone who continues to stick with us for the fight against Batten disease!

Things I'm Thankful for, Part II

Tonight, I'm thankful for video games. Yes - you read that correctly. An homage to Nintendo doesn't feel very poetic or grand, but in my world, video games mean that I've accomplished necessary tasks to the extent that I don't feel (very) guilty about flipping my own switch to the 'off' position and doing something mindless for awhile. In my world, mindless is healthy, because often, my brain and my heart are so twisted over certain cards we were dealt that stress becomes physically exhausting - even damaging. I try really, really hard to hide the signs, but people close to me know how to spot them.

Sometimes in college, after I'd had a rough day, I'd flop on the vinyl couch in the apartment I shared with three other girls and play Donkey Kong 64 until my roommates had come home from class and gone out and come back home again. Last winter, when I stayed home from work sick with a sinus infection, I played Super Mario Galaxy for nine hours and seven minutes. I know this because the game documents such stretches of lost time. And tonight, to celebrate the beginning of a long holiday weekend, I'm rescuing John from our garage (where he has been painting siding since he got home from the office) so I can beat him at Wii Sports Resort before he annihilates me at Golden Eye.

Taylor plays video games sometimes. She's pretty good at bowling on Wii Sports if you get her lined up just right and help her with her wrist motion the first couple of frames. And she does a mean hula hoop on Wii Fit. Unlike her big sister, though, T prefers to unwind with her music. Put her in a room with a stack of CDs and her CD player or her Ipod, and she'll entertain herself for hours on end. She used to sing all of the words to the songs. These days, she doesn't sing the words very often. Instead, she picks out certain notes and hangs on them forever, like a miniature opera singer. She's (almost) always in key. Sometimes we have to remind T not to do this - at least not so loudly - when we're in a public place. But part of me hates to take it away from her.  Pictures mean nothing to her now. Music is everything.

Here's to all of the mindless activities ever invented for the escapement and enjoyment of the mind and the soul. And here's to the next few hours in front of my TV. Wish me luck! :)

Things I'm Thankful for, Part I

In honor of the upcoming Thanksgiving holiday, I've decided to pen a new entry on each of the next four days, with each post dedicated to something for which I'm thankful.

Tonight, I'm thankful for my ability to see. I'm blessed to possess two eyes that, with the assistance of contact lenses or thick glasses, receive reflected light and usher it through first the cornea, then the pupil, then the lens and then the retina, where finally it is converted into electrical impulses and sent to my brain, where an image is produced. This is an amazing process that took nearly three full lines to describe but that in reality happens instantaneously and without requiring any thought or effort on my part. Since I was nine years old, I've had a hard time climbing out of bed in the morning without first putting my glasses on, but once I do that, the world is crystal-clear.

I'm thankful for all of the visual memories that will forever remain preserved in my heart. This very instant, I can see the way the sunlight trickled through the leaves of a certain tree whose canopy watches over a sidewalk that runs alongside the Undergraduate Library on the campus of the University of North Carolina. I used to purposely take that sidewalk to South Campus just so I could walk through that dappled light. Now, I can see the fountain at SouthPark Mall in my hometown, as well as the thousands of pennies slumbering under the water's surface, and my dad's face as he tells me, his only child, a story, and the scoop of mint chocolate chip ice cream perched atop a sugar cone from the Baskin Robbins whose departure from the mall many years ago almost left me in tears. (I immortalized that particular memory in the novel I never finished once the doctors discovered the terrible truth about my sister's genes.) Now, I can see my great-grandmother's laugh - because she laughed with her eyes - as she watches a funny movie with me in her basement, an ice-cold can of "Co-cola" in her hand and an unfinished game of Chinese checkers on the coffee table. Now, I can see my husband's face as he asks me to marry him on the sidewalk in front of my grandparents' house in Wake Forest, NC, where we spent our first wonderful long weekend together as best friends just three days before he asked me out (not the first time he asked, but the first time I said "yes") during the first semester of our senior year of high school. Now, I can see my little sister's beautiful, working eyes focus on me as she runs to give me a hug.

I graduated from college in the spring of 2004, and that tree beside the library is no longer a regular part of my life. The SouthPark Baskin Robbins is so long-gone that most people living in Charlotte these days probably don't even know that it ever existed. My great-grandmother passed away a few years ago, and I never got to tell her goodbye. My husband and I are still as in love as we were on our wedding day, but my grandmother is very sick, and the house where John asked me to marry him was sold two months ago. And my sister has not made eye contact with me in a very long time, because Batten disease came along and decided that she doesn't deserve to see. So I cherish photos I took of her more than a few years ago - the ones in which she is looking at the camera. And more than ever, I cherish each and every moment spent with my blind sister. I cherish the miracle that is her presence in my life, and I hate the disease that wags its finger at me every day, tells me to stop fighting back, tells me I should be satisfied with the memories I already have and stop dreaming of making more.

Miles to a Miracle!!!

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit - some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor's school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates - never mind that she's blind. Taylor has always refused to watch the figurative race - life itself - from the sidelines - and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy - an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.

On the day of the practice 5K shortly before their first shot at the real thing - the Jingle Jog in uptown Charlotte - Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others - including her classmates and coaches - fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T's feat that day and immortalized it in an article she wrote for Endurance Magazine.

A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister's face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing - even Batten disease - is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word 'Believe,' written in big chalk letters stretched across the pavement. And even though T didn't win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don't know exactly how long it will take us to get there, the finish line - in this case, the cure for Batten disease - does exist. And the smarter and faster we run, the more kids like Taylor we'll save.

Enter Miles to a Miracle, Taylor's Tale's exciting new campaign to fight the disease that threatens to steal Taylor's ability to run and so much else. T's story is about running, but you can do whatever activity you love for kids with Batten disease - whether it's running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own - from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 - the distance in miles around the globe - in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don't think you'll do any fundraising but still want to help us use Taylor's inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend's effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:

B-e-l-i-e-v-e.

Go to Miles to a Miracle!



Two Little Letters

"People who attempt the difficult often attain the impossible."

-Mimi B. Hull, Ph.D.

I strive to live by these words everyday. I try to remind myself that while life's not perfect, there's always something better down the road, even if we're forced to clear a lot of hurdles before we get there. I pray for the strength and the will to fight those two little letters - 'im' - clutching the 'possible' and holding it back. We WILL win our battle against those letters someday soon, and all that will be left is the miracle. Come hell or high water, I believe.

Love to my mom, who shared this little dose of inspiration with me on one of my down days. Love to my sister who, no matter how many hurdles stand in her way, will always be our miracle.

New Video from BDSRA

Please take a few minutes to watch this new video from the Batten Disease Support and Research Association (BDSRA), filmed at the organization's annual conference in Chicago in August 2010. It's a wonderful collection of perspectives from families and other individuals deeply affected by Batten disease. I'm featured on the video starting around the 4:30 minute mark. Thank you so much to our friends at BDSRA for creating this great tool in the fight against Batten disease and for allowing me to tell my story. Remember, you can help us fight this tragic disease by spreading the word and also by making a donation at http://www.taylorstale.com/get-involved. Thank you for your support!


The Batten Journey from On Scene Digital Printing on Vimeo.

What Next?

In 1984, Reynolds Price - acclaimed writer, Rhodes Scholar, Milton expert, Duke University professor of English and my third cousin - learned he had cancer: a 10-inch-long, malignant tumor wrapped around his spine that he came to call 'the eel.'

Imagine getting that diagnosis today. 26 years ago, the eel was a death sentence. And yet 26 years later, Reynolds is still writing books and teaching his usual three courses at Duke. Seven years ago, when I was 21, I drove 10 minutes from my Chapel Hill apartment to Reynolds' house in the woods. We spent the afternoon talking about spirituality, Scotch, ginger molasses cookies (inspired by the Foster's Market molasses cookies I'd brought to share) and even a little writing. That day still conjures up the clearest of pictures and deep-down feelings whenever it crosses my mind.

I'm attending a great class with my mom at our church on Wednesday evenings. It focuses on spirituality in Reynolds' works. Tonight, we discussed A Whole New Life: An Illness and a Healing. This extraordinary book is the story of Reynolds' agonizing illness and astounding survival. It was published in 1994, and the first time I read it as a college student, I had no inkling of the sadistic disease lurking in my little sister's cells. I think that I will read it again. On page 185 of the paperback edition, Reynolds makes a profound statement. At the time of my first reading, my life was free from the kind of pain and suffering that I know all too well these days. In fact, when our teacher at church, the poet/novelist Tony Abbott, brought the passage to our attention in tonight's class, I read it with virgin eyes, as though I had never encountered it before:

"If belief in an ultimately benign creator who notices his creatures is available to you, you may want to try at first to focus your will on the absolute first ground-level question to ask him, her or faceless it. Again, that's not "Why me?" but "What next?"

In the early days following Taylor's diagnosis, I often plainly asked God all possible variations of that question:

• "Why her?"
• "Why me?"
• "Why us?"

I was on the verge of losing my faith entirely in the wake of Batten's entrance into our lives when I suddenly realized that I was asking the wrong question. Whether or not there was a why, I certainly wasn't doing anyone any good, least of all Taylor, by questioning the sober reality of her defective CLN1 gene. It was on that day that I decided the only way to fight back was to start figuring out how to play the cards in my hand. Otherwise, I might as well have thrown all my chips on the table and left the game.

Here is another passage from that same page that I simply love:

"My own luck here was long prepared, from early childhood; but as with all sorts of invisible luck, there have been forced treks these past ten years when I all but quit and begged to die. Even then though I'd try to recall a passage of daunting eloquence in the thirtieth chapter of the Book of Deuteronomy where the baffling God of Jews and Christians says

'I call Heaven and Earth to witness against you today that I have set life and death in front of you, blessing and curse. Therefore choose life so that you and your seed may last to love the Lord your God....'"

Though she hasn't read Reynolds' book, Taylor gets it. She's always gotten it. T greets each new day and bids it goodnight choosing life, no matter how tough things are between sunrise and sunset. A life with Batten disease surely isn't one we would have chosen for her, nor is it one she would have chosen for herself had she been given a choice of cards. But they're her cards, and ours because we love her. And because I love her, I choose life for her, too. And here's a question for Batten disease: you gave us a good fight today. We fought right back. We're still playing the game. So what next?