New Hampshire was special.
Heather and Chris Dainiak established the Our Promise to Nicholas Foundation in 2009, not long after Nicholas, the older of their two sons, was diagnosed with late infantile Batten disease. Heather and Chris promised Nicholas they would work tirelessly to find a cure for the monster stealing his sight and motor coordination and wracking his body with seizures.
Batten disease is nasty, and Nicholas gave it everything he had. His huge drive to never give in or give up inspired a whole community to fight for him.
Nicholas died on his 11th birthday in 2014. But his courage lives on, and Heather and Chris are keeping their promise.
I flew to New Hampshire to run a race, but running isn’t what I’ll remember about my first trip to the Granite State. I know the New Hampshire 10 Miler circled Manchester’s Massabesic Lake. I know the course was hillier than I’d thought, and the temperature was far higher than I’d expected for New England. I know I crossed the finish line with a time 10 minutes slower than my personal record for 10 miles and still felt as if I’d run a full marathon.
But those details aren’t what I’ll remember about New Hampshire. Instead, I’ll remember the time I spent with Heather and Chris and their surviving son, William.
I’ll remember the signs the Dainiaks made for the race and the low five I gave William as I made the turn for the finish line. I’ll remember how Chris let me give him a hug, even though I was drenched in garden hose water, Gatorade and sweat.
I’ll remember seeing the elaborate train tracks Chris is building in his basement. A beautiful tribute to Nicholas (who loved trains), Chris’s passion project is also about grieving and healing.
I’ll remember my chance meeting in town with the father of William’s longtime caregiver, who still supports the Dainiaks and even joined Heather at last month’s Batten Disease Support and Research Association conference in St. Louis.
I’ll remember how I felt when I waded ankle-deep in the cold Atlantic in Maine after the race and watched the sun set on another chapter of this amazing journey.
I’ll remember how I finally cried, alone in my car on Sunday afternoon after I’d flown home to the Carolinas. Because I knew that while the sun would rise again on the coast of Maine, we can’t bring Nicholas back and we can’t save my sister, Taylor. All we can do – what we MUST do now – is help make sure other kids don’t suffer the same fate. Our job is to build and protect the powerful legacy Nicholas and Taylor and so many others have started.
I may not remember my time in the race 10 years from now, but I’ll remember why I ran it.
And like Heather and Chris Dainiak, I know that sometimes, the hardest part is realizing you’ll never finish the race you started, because that race is already over.
Sometimes, running a different race is the best way to heal.