I flew to Philadelphia last Friday for the Rehoboth Beach Half Marathon on the coast of Delaware. The flat, fast, late-autumn race felt like the perfect way to break back into racing after my five-month absence fueled by book deadlines, TED talks and sibling weddings, plus an untimely ankle sprain on Halloween night.
I dedicated Delaware, state 19 of 50, to my sister, Taylor, and Wilmington brothers Ryan and Brayden Kapes. Ryan, 13, and Brayden, 9, have Sanfilippo syndrome.
Like Batten disease, Sanfilippo syndrome is a lysosomal storage disorder that affects mostly children and is usually fatal by the late teens or early 20s. I met the boys’ father, Carl Kapes, at a charity golf tournament in Charlotte this spring (Carl played in the tournament; I took a few swings with his playing group and mostly embarrassed myself).
Carl knows something about taking on physical challenges to fight a rare disease. Since his sons’ diagnosis in 2009, he’s climbed several of the world’s tallest mountains (including Mount Rainier in Washington state and Mount Kilimanjaro in Tanzania) and raised more than $1 million for the Team Sanfilippo Foundation.
“If people don’t know about Sanfilippo, they can’t help us,” Carl says. “We look to turn our struggle into a positive by helping make sure others down the road won’t have to struggle.”
Turning a struggle into a positive? That’s my philosophy, too, and a creed I shared on the TEDxCharlotte stage this fall, when I talked about turning tragedy into opportunity. In my own family’s case, it’s been magnified ever since we realized any treatment we helped bring to light wouldn’t arrive in time to save Taylor.
That philosophy helps me face my sister’s tragic illness and all of the stressors that come along with watching her get sicker while trying to be the best rare disease advocate, writer, runner, friend, wife, daughter and sister I can possibly be. But it also comes in handy when I fail to run my best race.
That happened Saturday in Rehoboth Beach, Delaware.
This race was my second shot at breaking 1:40 in the half marathon after I came up short in Montana over the summer. But as the town came to life and thousands of runners crowded around the town bandstand mere steps from the Atlantic Ocean, I got off to a slow start, pulling 8:01 and 7:58/minute miles when I needed to consistently pull 7:36/minute miles to achieve my goal. Things only got worse for me in Cape Henlopen State Park, where paved roads turned to a cinder trail. My pace inched toward 8:20.
As bad as the cinders proved to be for my personal record aspirations, I loved this course. In the forest, the flags of all 50 states hung from lines suspended above the trail. At a point when my head and heart and lungs told me to speed up but my legs and ankles and feet told me to slow down, I eased up and enjoyed the ride. When I exited the tunnel of trees en route to the finish line on the out-and-back course, I faced the sun, now high in the sky, as it warmed my face and neck. I felt my sister’s name on the back of my shirt, the same shirt I wore when I ran the same distance blindfolded more than four years ago. I found that final kick I always seem to muster in these races, and I turned for home. When I crossed the timing mats, the clock read 1:46:33.
I’m disappointed that, for the second consecutive race, I failed to achieve my sub-1:40 half marathon goal, even though I probably could have broken it by pushing my body a little more.
But while walking in the cool sand as a flock of birds dotted the sunlit sky early Saturday evening after the run, I silently voiced the words I so often forget during a race: Taylor never cared about my time.
When the sun slipped beneath the horizon and the sky turned from hazy blue and pink and orange to deep black and spattered with stars, I was already thinking about the next effort, the next race, and the next chance to maybe make a difference for kids like my sister and Ryan and Brayden Kapes. And I knew that elusive sub-1:40 goal would be there for me once again, pushing me, prodding me, daring me to give my best every day not for myself, but for them.
Sometimes, falling short of a goal feels just right.
Want to help Taylor’s Tale support kids like Ryan and Brayden and my sister, Taylor? Please consider donating $19 to my fundraising campaign for state number 19. Every dollar counts! Donate Now