From the Rafters

Mom, Taylor and I made our annual trip uptown to see the Nutcracker at Charlotte's Blumenthal Performing Arts Center on Sunday night.

For me, Christmas wouldn't be whole without these two precious hours spent with my two favorite girls. We were up in the rafters this time around, but none of us cared. Taylor, of course, goes solely for the music. I love the ballet, but I go mostly because almost nothing makes me happier than seeing my mom and my little sister smile. I'm not quite sure how many times I've seen the Nutcracker, but that will never get old.

I cry very little these days; sometimes, I wonder if my tear ducts haven't all but dried out thanks to the events of the past four-plus years. But at the zenith of my favorite part of the ballet, Pas De Deux (the dance of the sugar plum fairy and her prince near the end of Act II), I glanced over at my mom, and I lost it.

Only God knows how many more times the three of us will be able to go to the Nutcracker together. Our next chance is a year away, and I can't take anything that far out for granted. I can't take next month, next week or tomorrow for granted. To be fair, none of us can. But Batten disease changes the game. The curse that is Batten disease makes each day my family is still whole even more of a blessing. The present is fleeting. But those two wonderful hours in the Blumenthal rafters with my girls will live on in my heart forever.

Finding My Wings

I snapped this photo with my phone near the very end of the 13.1-mile Thunder Road Half Marathon course this past Saturday morning. If it doesn't strike you as special, take a closer look. The man in the blue shirt is running with a cane. He's blind.

My friend Amy pointed this fellow out to me early on in the race, when the throng of runners still tightly packed the streets of uptown Charlotte. Seconds later, I lost him in the crowd.

3,231 runners completed the 2010 Thunder Road Half Marathon, but for some reason, I crossed paths with the blind runner not once, but twice on our shared journey to the finish line. I can't say the same about any other runner with any degree of certainty. I'm not the most superstitious person in the world. But I believe in divine intervention.

I believe I could have gone the full 26.2 Saturday based on energy alone. My heart and my lungs still felt good at mile 13. But by then, my feet and ankles had already been screaming for mercy for seven whole miles. Many times, my head told me to pull out. Injuries on top of injuries - and the accompanying pain - can do that. I forged on because I was running for Taylor. When I saw the blind man under the bridge, I knew she was right there with me. Shortly afterward, the finish line came into view. Taylor helped me find my wings, and I sprinted the rest of the way.

If I Have to Crawl

The cold, damp weather chased me indoors this morning for my Thunder Road Half Marathon training. I'm a fan of running in the cold, but not the rain. So I bundled up and headed to the YMCA, where I hit the 1/12 mile-long track with my heart set on completing 120 laps, or 10 miles.

The first mile felt good - nice and easy.

The second mile was better; my muscles were warm, I was into the heart of my playlist, and I coasted.

Near the end of the third mile, I thought about how if I was Taylor running one of her 5Ks, I'd be close to the finish line. When I'm running a race, I like to sprint the rest of the way as soon as the finish line comes into my field of vision. But Taylor never got a glimpse of the finish lines she crossed. She had to get her last burst of energy from somewhere else - somewhere deeper, somewhere purer.

Two laps into the fourth mile, an invisible demon struck a match inside my shoes, and the balls of my feet caught on fire. My achilles whined. Everything else felt good, though. So I pushed on.

Partially to push my very real physical pain out of my mind, I thought about how if I was Taylor, I would be running in darkness. I was too scared to close my eyes on one of the turns, so I closed them for an instant on a straightaway. I felt the presence of other runners and walkers on the tiny track and knew that I would never be able to make it to the far end. I opened my eyes.

Seven laps later, I glanced down and discovered that the entire toe area of the shoe on my right foot was soaked with blood. I never stop in the middle of a mile, though. I had three laps left. Just a quarter of a mile.

As I rounded the third corner of lap 60, I sprinted the length of the last straightaway and right into a chair by the water fountains. I was only halfway through my 10-mile run. But I knew I was done.

I've been injury-prone since I was 15 years old. I've never gotten through a single soccer season without getting hurt. In my mid-20s, I made the inexplicable decision to turn myself into a distance runner. I never really thought about why until this very moment, right here. But I know instantly, without question, that I became a distance runner because of my sister.

In the months after Taylor's diagnosis, I ran to get away from Batten disease. No matter what, running always felt better than crying. I still cried. But I ran more. And after I discovered that I just might have a say in how the story turned out, I ran harder than ever.

Blood-soaked shoes and all, I'll never stop running. Next Saturday, December 11, I'll cross the finish line of my second half marathon, even if I have to crawl. I could never let myself quit. That's not Taylor's style, and it's not my style either. So, to bloody feet and weak ankles and Batten disease, I say bring it on. You may knock me down. But you'll never knock me out.

I'm not only running for myself - I'm running to save Taylor's life. Please consider supporting my efforts through Miles to a Miracle, a new campaign inspired by Taylor's great courage on the race course and in life. Email me to learn how.