Thursday, May 28, 2009

Woo Hoo!

Taylor and Mom just returned from Duke Hospital in Durham, where T underwent various tests for her new neurologist (including her third MRI since January and more neuropsych testing). After two long days during which a chatty T's only complaint stemmed from the "gook" they put in her hair for the EEG, she exited the front of the hospital and let out a big "Woo Hoo!" 'She was finished, tired, but still role model,' Mom wrote in her Caring Bridge journal. 

For our second wedding anniversary last summer, John and I traveled to the Outer Banks of North Carolina. During our second leg of the trip on the northern end of the barrier islands, we visited Jockey's Ridge State Park. It was my first time back in the park since the summer I was 12. On that particular July day long ago, the temperature approached 100 degrees, and the humidity and blinding white sand made it feel hotter. No matter - I promptly removed my sandals and sprinted to the top of the largest natural sand dune on the East Coast only to then collapse to my knees. My feet sank into the sand, so hot it burned like icy needles on my bare skin. I became too dizzy to stand. My uncle David, who was only 25 and in med school at the time, scooped me up into his arms and carried me down to the entrance of the park, where he literally dumped me under a spigot and turned the water on full blast (I think partially to relieve my symptoms and partially to punish me for my stupidity). 

14 years smarter and not quite as deep into the North Carolina summer, I had no close calls with heat exhaustion the second time around. John and I ran, alright - but downhill. Jockey's Ridge is so vast that it seems like a mountain range rather than a single continuous dune, and we made it our mission to find the steepest inclines, walk to the crest, clasp hands and run back down as fast as we could. Anyone who saw us do this repeatedly probably thought we were crazy. To strengthen their case, I cried out a jubilant "Weeeeeeeeeeee!" on each downhill flight. I felt like I was 12 again, only this time I wasn't miserable. In fact, in those moments, I felt happier than I had in a long time. I felt unfettered. Alive. 

Here and there, I'll forget how that feels. I couldn't bring Jockey's Ridge back to Charlotte with me, so I run. Yesterday we got a short reprieve from the rain, so I hit the pavement after work. I ran to the pond in our neighborhood and did laps on the obstacle course of a path, dodging rain puddles and muddy patches and the family of ducks who, like me, was glad to have a break from the rain and had come out to play. Though nothing was falling from the sky at the time, the humidity was palpable. Everything is so green right now from all the rain, and for a time I forgot I was in Charlotte and instead found myself elsewhere (the Everglades came to mind, which might be why I didn't run for as long as I normally do). Running does that for me. All I have to do is block out the house overlooking the pond with the pool and the fake palm trees and the tiki torches in the backyard, and I can be anywhere. And on my run last night, as I crossed the bridge and made my last turn for home, I let out a "Weeeeeeeeeeee!"

I may forget what that feels like from time to time (alright, more often than not these days), but I'm not sure that T ever does. T isn't always happy - sometimes she's sad (and who could blame her?), but I don't think she ever forgets. She can make the best of any situation and turn it around so that even though she had to miss two days of school and travel close to three hours to a strange hospital to be poked and prodded and questioned and recorded for two days, the worst part was that they had to put "gook" in her hair for the EEG. And Mom, who knows her youngest daughter all too well, had expected as much and requested a late checkout at the hotel so T could wash her hair before hitting the road again. And so for T, another bout was over, and everything was cool, and "Woo Hoo!" was the word of the day. And that, I say, should be the word of all our days. Because no matter how bad things get, there's always a huge sand dune and after-rain runs and fruity shampoo to wash the day away. 

Sunday, May 24, 2009

We Need Your Words

Taylor's Tale has a brand new Web site! Check it out here

When our original site launched in January 2007, I was still relatively new to the world of Batten disease. We had never had a fundraiser. Our new steering committee had met only once.  My family had never publicly spoken about Taylor's illness. Though her eyes had already begun to fail her, Taylor still had days when she could see. 

In those early days, I didn't have a firm grasp of our situation or any grand ideas for beating the odds. In fact, there were only two things of which I was completely certain: 1) my sister was born with a fatal disease and 2) to have a chance to save her life, we had to tell her story. So that's what I've tried to do.

Taylor's Tale, the organization, began on February 9, 2007, the evening of Chapter One, when my family and I stood surrounded by 160-odd friends and spoke candidly about the cards we were dealt and how we were going to play them. Taylor's Tale, the story, began the day my little sister was born in 1998. And since the ink dried on the pages of Chapter One, Taylor's Tale has been a story written by committee. The words for a story like T's can't be found in the mind or the heart of just one. The happy ending will require your words as well as mine.  

So, take a look at the new site. Read our story for the first time or get reacquainted with T and our efforts to save her life and the lives of others like her. Find out how you can help write the next chapter of Taylor's Tale. There are so many who, like T, need our support to see their dreams come true. 

Sunday, May 17, 2009

Never Stop Dancing

I went to Andre Hairston's Cardio Funk class today for the first time, and I'm already a huge fan! I'm a group exercise novice and wasn't blessed with great rhythm, but from the time the music started, I couldn't stop! (To learn more about Andre and his popular Cardio Funk class, visit

Taylor's Tale is so lucky to have Andre's support. On Saturday, June 27 at 10 a.m., Andre will offer a special Cardio Funk class at Myers Park Presbyterian Church in Charlotte to benefit Batten disease research. A $10 donation to Taylor's Tale gets you in the door. 

It doesn't matter if you're male or female, young or old. Andre's calorie-burning dance moves and mix of music styles offer something for everyone. And if you join us for Cardio Funk for a Cure, you won't just get a great workout - you'll help us write the happy ending to Taylor's Tale. It'll be a morning in the true spirit of T - a girl whose first love is music; a girl who may dance to her own beat but never stops dancing. 

RSVP to Cardio Funk for a Cure on Facebook.

Sunday, May 10, 2009

Chalk Letters

This morning, flanked by two angels, Taylor completed the Girls on the Run 5K 12 minutes faster than she reached the finish line of the Jingle Jog 5K in December. 

On the last lap around picturesque Latta Park, we came across the word "Believe" written in big chalk letters stretched across the pavement. Believe - that's the gift T gives us each and every day. 

"Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left." 

-Hubert Humphrey

Wednesday, May 6, 2009

The T Zone

This Saturday, Taylor will run in her second 5K when she joins her Girls on the Run teammates at Charlotte's Latta Park for the culmination of their spring program.  

The expression on T's face as she crossed the finish line of the Jingle Jog 5K this past December with her running buddy, Mary-Kate, is still fresh in my memory. The bungee cord that connected them was T's lifeline that day. For me, it symbolized hope: proof that nothing - even a disability like T's - is cause enough for giving up on a dream.

T has a lot of fans, and while I know you'll all be there in spirit on Saturday, she needs some of you there in person. The Packers have the Cheeseheads. Duke has the Cameron Crazies. Michigan State has the Izzone. If you're in Charlotte this weekend, please consider coming out to Latta Park and forming a cheering section for T - call it the T-Zone. Then, watch her finish the race. When she crosses that line, you'll understand the magic that is her story. And it's not just her story, not really. Rather, it's the story of any girl who's ever overcome an obstacle, discovered her own gifts and embraced them. 

The race starts at 9 a.m. on Saturday at Latta Park in the Dilworth neighborhood. Click here for details. 

Go, T, go!