I spent months training and long hours planning for the Thunder Road Half Marathon last year. Running the 13.1-mile race blindfolded, tethered for most of the way to my friend Andrew Swistak, gained national attention for Taylor’s Tale and our fight against Batten disease, and it gave me the experience of a lifetime. When the dream ended, I said it could never be repeated.

But it didn’t seem right to treat the 2014 edition of Thunder Road like just another race on the race calendar, especially after our friends at the teen service organization Playing for Others asked our permission to walk the Thunder Road 5K blindfolded to honor Taylor and our cause.

One week before race day, I came up with a crazy plan: run the last leg of the 2014 Thunder Road Half Marathon blindfolded – and untethered. Never mind that:

• I’d run blindfolded just once since the 2013 Thunder Road Half Marathon (an unofficial 5K with Andrew to commemorate National Running Day in June).
• I wouldn’t get an early start this year (thus putting me right in the crush of thousands of other runners).
• Andrew’s sidelined with a foot injury, meaning I’d need to find another guide on short notice.

But I’ve been stubborn since I was a kid, and once I get an idea in my head, I’m tough to shake. My husband John says I always up the ante, and he wouldn’t be surprised to see me run a marathon blindfolded while juggling chainsaws if I thought it’d help our cause.

I don’t know to juggle, but I’d run blind and untethered for short stretches before. So one week before race day, I put out a call for runners aiming to run the half marathon somewhere around my goal pace. Even though I planned to run the final stretch untethered, I needed someone to help me avoid obstacles, from sewer caps and curbs to other runners. Almost immediately, my friend Alyson Vaughan responded, and I had a guide.

By the Tuesday prior to race day, I had the ear of WSOC-TV, Charlotte’s ABC affiliate and the top local station. We filmed a story about Playing for Others’ effort and my crazy plan for the end of the race with anchor Natalie Pasquarella Wednesday afternoon; while we ran/walked in the sunshine at Charlotte’s Freedom Park, Taylor had her second surgery of 2014 at Levine Children’s Hospital. As Playing for Others teen member Anna Harden guided me around the pond, I thought about how Anna and Taylor are about the same age, and I wondered if they’d be in the same circles of friends if my sister wasn’t sick. Batten disease has stolen so much.

The WSOC story aired Friday; see it here. All day, Alyson and I traded emails and texts about everything from purple shirts to parking plans. We didn’t have time to practice together.

On Saturday morning – race day – Mom pulled into my driveway a few minutes before 6 a.m. She’d signed up for her second 5K, and she looked fabulous in her purple running gear. But her phone rang the moment she walked through my back door. Taylor had just had a big seizure, Dad said. And just like that, Mom’s Thunder Road experience was over. “I hate Batten disease,” I said to John as my mother’s car pulled away.

It was 22 degrees when John and I arrived uptown, and I tried to keep my teeth from chattering as I did an interview with Charlotte’s NBC affiliate by the finish line (watch the story here). When Alyson arrived, we had our first and only “practice session.” I pulled the blindfold over my eyes, and we ran up and down the park milling with people in front of the baseball stadium as Alyson gave me verbal direction. We only bumped shoulders once. Then, it was go time.

I’ve been banged up since I ran the Great Smoky Mountains Half Marathon nearly two months ago, and I didn’t train for Thunder Road. But we lined up with the 1:45 pace group led by the Charlotte Observer’s Théoden Janes and hoped for the best.

Nine miles later, we were still on pace. That’s when my legs got angry. My calves were so tight I thought my muscles might pop. But when my eye caught the photo of Taylor finishing the 2008 Thunder Road 5K slipped inside my armband, the pain melted away.

About 1.25 miles short of the end, we made the final turn onto S. Mint Street, a not-quite-straight road in the heart of Charlotte. I’d been running to Alyson’s left for much of the race, but when we reached Mint, I switched to her right, because I’d always run to Andrew’s right. I slipped the blindfold down over my eyes, and we headed for the finish line.

We bumped shoulders a few times, but Alyson was a pro. She helped me avoid the curb and kept me on course when the road twisted and turned. In the background, someone shouted my name; I waved and pushed ahead (I learned later that the voice belonged to my friend Sharon).

Somewhere near the end – I don’t know exactly where – we passed the Playing for Others cheer station on our right. Alyson told me we were approaching a sea of purple, but she didn’t need to say a word; I could hear the cheers and knew it had to be them.

When I ran the 2013 race, I ran the last leg with almost no one around us, because we’d gotten a 30-minute head start on the rest of the field for safety reasons. But this time, Alyson and I were running in a pack for most of the 13.1-mile race, including the final 1.25-mile leg I ran blindfolded. In a crowded finish line area, the logical thing to do would have been to slow down or even walk.

But running that last stretch, I could only think of two things: my blind sister running across the finish line of the 2008 Thunder Road 5K, and the feeling I had when I hurdled the timing mats last year and landed in my mom’s arms. The final words from Playing for Others member Anna Kilguss’ poem, words that graced the backs of the team’s shirts for yesterday’s 5K, echoed in my head: “You believe. We watch. She flies.” 

And then, we were in the finish chute, and instead of slowing to a jog or walking, I was sprinting in the darkness (like I’d always known deep down that I would), and Alyson was yelling “Jump!” and “Jump!” again as I hurdled the timing mats. The last thing I remember before getting my medal is Alyson yelling “Stop!”

Tears welled up in my eyes as I simultaneously hugged my friend, received my medal, realized we’d both set new personal records for the half marathon (1:44:37) and caught a sea of purple and love in the corner of my eye – the Playing for Others crew.

But I didn’t cry. Instead, I lost myself in the magic and the wonder of the moment – the great beauty that can be found in even the worst tragedies if you only believe. And hours later, when I hung my eighth half marathon medal around my sister’s neck, wrapped my arms around her thin body and breathed in her courage, I soared.

Please help me write the happy ending to Taylor’s Tale. To support our fight to develop treatments for Batten disease and other rare and genetic diseases, click here.