Thursday, December 31, 2009


A lot has happened in 2009. I think back now to one year ago today, to how much the prospect of 2009 scared me. Much of what I feared has come true. My sister's disease has continued to march on; the signs of progression are more evident with each passing day that we don't have a cure. Much of what I looked forward to, though, also came true. We had good days. We funded research. Research moved forward. After every hard rain, the clouds parted, and the light of the sun washed over us.

2010 scares me more than 2009 did in many ways, but that doesn't mean that I've ever stopped believing. I have no doubt that we will have more bad days next year. Despite that fact, I have no doubt that great things will also happen. Incredible progress will be made. Our faith in miracles will be renewed again and again. And one day - in 2010 or in the years soon to follow, I will use this very space to tell you that we have won.

Thank you for supporting Taylor's Tale in 2009. Stick with us awhile longer - we have more of the story to tell. Here's to a promising 2010. Happy New Year!

Thursday, December 24, 2009

The Bell Still Rings for Me

I'm spending the last fleeting minutes of Christmas Eve here on the couch with my parents, my grandmother and T; the Polar Express movie has just ended. As much as I loved the book growing up (the copy Mom read to T tonight has my name and home phone number scrawled on the inside front cover), I haven't read it in years. Sitting here tonight, though, the last few words of Chris Van Allsburg's story touched me in a way they hadn't before.

"At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I've grown old, the bell still rings for me as it does for all who truly believe."

The Polar Express is about much more than a man in a fuzzy red suit who makes a living jumping down chimneys one night a year. It's about believing in the unbelievable. It's about the journey all of us take at least once - as children or adults; in the context of Santa Claus, or religion, or a relationship with someone we love.

I have been on that journey for three and a half years in the context of my sister's illness. After T's diagnosis, it was a long time before I stopped being angry at God. I am no longer angry; I just plead with Him everyday. After that fateful day, it was a long time before I could bring myself to believe that T has a shot. In the end, my decision to believe was more a survival tactic than anything. I couldn't get out of bed in the morning if I thought our story's ending was preordained.

Unlike the boy in The Polar Express, I don't know where our train is going - and I take comfort in that. The unknown is better than a guaranteed bad ending. I know that Batten disease is - thus far - universally fatal. I know that if T were to survive it, I would call it a miracle. But that's the beauty of faith. No one has ever beaten Batten disease. But the strong half of me believes in that which I have never seen. And though I do not know our train's final destination, I know that it is going forward, not backward. I know that it is moving much faster than it was a few short years ago. I know that if I quit, she will lose. And I know that for as long as I believe, the bell will ring for me.

Merry Christmas!

Monday, December 14, 2009

.1 to Go

In July 2007, one year after T's diagnosis, I began training for my first marathon, which I planned to run in her honor. That September, I set a new personal record for distance with a 17-mile training run. Two weeks later, I pulled out of December's Thunder Road Marathon with a foot injury.

One year later, I took it down a notch and registered for the half marathon. A series of family crises that fall affected my training; a month before the race, another injury led me to pull out of the half. On the morning of the Thunder Road events, I instead started the Jingle Jog 5K with my sister and her Girls on the Run team. 20-odd minutes later, I arrived at the finish line; 30 minutes after that, a triumphant Taylor crossed the finish line carrying the Fletcher School team sign with her coach, a few teammates and her running buddy, Mary-Kate.

This year, I again registered for the half marathon, but nagging pain in both feet, chronically weak ankles and a hectic autumn prevented me from training the way I would have liked. This time, though, I was determined to stay the course, even when a podiatrist plainly told me the morning prior to the race that my feet and ankles were a train wreck, and he didn't want to tell me not to run, but...And so it was that I found myself giddy in the crowd of 9,000 runners at 7:50 a.m. this past Saturday.

I started out at a moderate pace, as I always do. God didn't build me like a long-distance runner - I'm a more natural sprinter - and I have to constantly remind myself to conserve energy. After the first few miles, though, my happy little endorphins took over, and I coasted for awhile. Then, at around mile 5, the pain set in - throbbing pain and a fire burning in the balls of my feet (which take constant punishment, as I run on my toes) and tightness in my arches. By mile 8, I was the runner the onlookers lining the streets of Charlotte had to encourage to grind it out.

At mile 12, I split off from the marathoners to run the last 1.1 miles of the half course. It helped me to think about that last mile in terms of laps around a track. I told myself I only had four laps to go - easy. After what felt like two laps, my eyes began searching in vain for Martin Luther King, Jr. Blvd., where I knew the race ended.

The mile 13 marker was within sight when I first considered walking. Then, I remember, a woman - no, an angel - standing on the sidewalk told me, "Once you turn the corner, you'll be able to see the finish line." And at that very moment, I remembered what Mary-Kate, Taylor's running buddy, had said to me one year prior at the Jingle Jog finish line. When my blind sister fell and scraped her knees on the city streets, Mary-Kate told me, she asked her if she wanted to walk for a bit. Taylor, though, just shook her head, pulled herself up off the ground and started to run again. She didn't set any records that day, but when my sister crossed the finish line, she was running - just as she was at the completion of the Girls on the Run 5K this past May.

As those visions of Taylor running flickered through my mind, I turned that corner and, just as the woman had said I would, I saw the white banner stretched out above the finish line.

Even as my body begged me to stop, I shook off its pleas and, feeling Taylor's courageous spirit coursing through me, I sprinted the last .1 mile to the finish.

Like T that day at the Jingle Jog, I didn't set any records in the running of my first half marathon - my fourth road race ever and, by eight miles, the longest. But that feeling I got over the past .1 mile was something I'll have for the rest of my life.

Wednesday, December 9, 2009

T's Angel

My seven-year-old cousin, Morgan, is making her second appearance on my blog tonight. After a weekend at my aunt and uncle's lake house in July, I posted the following:

And later, after we'd climbed the 90 steps from the dock back to the house for the evening, I watched as our cousin, Morgan, played the role of T's angel. Morgan celebrated her seventh birthday on Sunday and is nearly four years T's junior but was as good with T as any adult I've ever seen. Not once did she ever seem to be phased by my sister's blindness. Her compassion and acceptance were gifts of the greatest value.

Tonight, my aunt Holly told me a story that gave me goosebumps. Morgan and her younger sister, Madi, have never heard of Batten disease. They only know that their cousin, Taylor, is blind.

Morgan's second grade teacher called Holly this afternoon. All of the kids posted their "wish" for 2010 on the school's second grade hallway. The teacher explained that while 75% of the kids wished for a new dog, or a new Wii game, etc., Morgan wished for her cousin Taylor to see again.

No words of mine could top that.

Tuesday, December 8, 2009

Help Us Believe this Holiday Season

I just returned home to the east coast after five days in northern California to discover that Christmas is less than three weeks away. I'm a little behind, as I haven't begun shopping for my family and friends. And as for me? I'm a little old to be making lists, and the last time I checked, Santa Claus does not follow my blog (unless he does so anonymously). Anyway, I only want one thing this holiday season, and if you're reading these words, you can help - even if you don't wear a fuzzy red suit and make a hobby out of climbing down chimneys one night a year. The one gift on my list is the same gift I've been asking for every night since July 24, 2006 - the day Taylor was diagnosed with Batten disease.

I want to find a cure for this rotten illness. I want to save my sister.

You can give the best gift of all - the gift of hope - by making a donation to Taylor's Tale. I'm happy to report that you can even do your shopping online; our new Web site, launched earlier this year, offers secure donations via PayPal. Click here to make a gift now. Because we're a 501(c)(3) nonprofit, all gifts to our organization are tax-deductible, and every gift made to Taylor's Tale supports promising Batten disease research.

Taylor is at Duke this week for a series of tests while most of her friends are likely making their own wish lists and counting down the days till winter break. I sent my mom a quick email this afternoon to check on my sister. Her answer was short: "A trooper as always." And that she is. I think about how much my sister has lost. No words of mine can describe what has been taken from her. And yet, all she's asked me for this Christmas is a set of drums - my sister, the aspiring musician. I can find her a nice set of drums, but I want to give her more. She may not see it quite the way I do, but Taylor is an aspiring adult. How often do we, as actual adults, stop to consider how very blessed we are simply to have reached adulthood - to be alive and, more often than not, well? My sister, and a lot of other children like her, have never had that luxury. But in spite of all that has been taken from them, those aspiring adults are - and always have been - inspiring children. The most noble thing we can do as actual adults is help give them a shot.