When I set out to run a race in all 50 states to honor my sister and support one in 10 Americans suffering from a rare disease, I only wanted to build on the momentum of running 13.1 miles blindfolded, which I did at Charlotte’s Thunder Road Half Marathon in late 2013. Taylor’s story was too good, her courage too inspiring, and the success of the blind run too complete to call it quits.
I never imagined the ride would be quite like this.
As the year comes to a close, I’m taking a look back at an incredible 2015: nine races, seven states and enough memories to last a lifetime.
I kicked off the year at home with a second-place finish in the Village 10K. My friend Alyson, who served as my guide when I ran the last leg of the Thunder Road Half Marathon blindfolded in 2014, crossed the finish line just ahead of me.
Running a quick race gave me the chance to see my mom and my husband cross the finish line of their race. Mom beat John by a good 10 feet and didn’t let him forget it!
In February, I flew to Texas – state number five – to run the Woodlands Half Marathon outside of Houston. I met Carolyn from the Will Herndon Fund, part of Beyond Batten Disease Foundation, and Will’s family.
The next day – February 28, World Rare Disease Day – I ran for Taylor, Will and all of the brave kids fighting Batten disease. I wore a “genes” ribbon for our friends at Global Genes to commemorate Rare Disease Day.
A few weeks later, I entered the annual ourboys 5k to honor Brandon and Jeremy Hawkins, brothers fighting Batten disease who also live in the Charlotte area. I sported the ourboys colors; my friend Randy wore purple for Taylor.
The 5K isn’t my best distance, but I crossed the finish line first in my division and took home a medal for Taylor.
On Easter Weekend, John and I went to Virginia – state number six – for the Charlottesville Half Marathon. I felt something pop in my foot at mile three, but I kept running and finished the half marathon fourth in my division.
Our story was covered by the local CBS and NBC affiliates and a paper back home.
I’d already been fighting a few overuse injuries, and the “pop” turned out to be the worst one of all. A stress fracture in my foot, it put me out of commission for nearly five months. I skipped the Tar Heel 10-Miler in my home state of North Carolina two weeks later, but my husband and our friend Chris ran for Taylor.
I also learned that day that being a spectator has its advantages. Because I was injured, I got to see this blind runner and his guide finish the race. I might have shed a few tears in the spring sunshine, and I remembered that while my foot injury would heal, others like Taylor and this runner face – and often overcome – much tougher obstacles.
In early May, I flew to Fargo, North Dakota – state number seven. I’d registered for the half marathon, but my doctor wouldn’t let me walk 13.1 miles in an orthopedic boot. So instead, I switched to the 5K and walked 3.1. It turned out to be a better media story for Taylor’s Tale. In fact, the local newspaper gave us a bigger headline than American record holder Deena Kastor, who was in town for the event!
After I did a couple of interviews, my friend Heidi helped me make it to the finish line.
After Fargo, I spent the summer recovering from my foot injury and doing my best to stay in shape on a bike trainer in my garage. I healed just in time for Hawaii – state number eight, where I gave the closing speech at the Kauai Marathon VIP dinner. There, I met Bart Yasso of Runner’s World and Jeff Sacchini, the race owner and a great guy who once served as a guide for a blind runner in the Boston Marathon.
I wasn’t in peak shape for Hawaii, and temperatures soared into the low 90s on race morning, but I finished. I’ve never been so glad to see the ocean.
The next month, I stayed a little closer to home, running the Athens Half Marathon for this beautiful spirit, Nicole – a student at the University of Georgia who changed my little sister’s life for the better. Today, she’s studying to become a child life specialist.
I wanted a PR (I didn’t get it), but I slowed long enough to pose for a Jumbotron shot on my lap around Sanford Stadium near the end. My Georgia finish marked my ninth state.
On Thanksgiving Day, my brother Stephen and I ran our local Turkey Trot in our little sister’s honor.
A perfect sister would have made a Thanksgiving Day race a family affair, but I can’t help my competitive streak. In any case, finishing first gave me the chance to capture this shot of Stephen (back left) crossing the finish line of the 8K.
State number 10 – Pennsylvania – was special because I took my mom. I ran the historic 8.4-mile Schuykill River Loop Race, and we met brave families like the Coynes, whose son Garrett has Batten disease, and other passionate rare disease advocates.
I felt another pop early in the race in Philadelphia. Luckily I didn’t have another stress fracture, but the pain was real. Despite the beautiful race course and ideal running weather, I felt pretty happy about finishing my first 10 states.
2015 was about sticking to a goal. It was about pushing through pain, and knowing when to take a step back. More than anything, though, the first full year of this crazy 50-state campaign revealed the real meaning of this journey. It taught me to accept that while I can recover from injuries, my sister’s body can’t beat Batten disease any longer. At the same time, it showed me just how close we are to reaching the finish line for kids like her.
And that’s why I’ll never, ever stop running.
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