How 'I Just Kept Running and Running' for a Cause, and You Can Too

Never in my life have I ever ran the equivalent of a half-marathon in the course of three days. Never did it previously occur to me that running could be enjoyable. Never did I feel the motivation or spirit to simply run for fun. But I guess that’s what happens when you stop thinking about what you can’t or don’t want to do and instead focus on simply moving forward — as far as you can in that moment —  with the ability to turn around.

I can’t lie, there is an incentive. I signed up for Charity Miles, an App that tracks your distance for running, walking and biking and connects you to a sponsor who donates to a charity of your choice for every mile you complete. Most of the charities are international nonprofits with multi-million dollar budgets, but with amazing missions and causes, including The Leukemia & Lymphoma Society. I started team #LukaTheLion and “I just kept running and running,” as Forrest Gump said. I even have a white YMCA visor I wear, and I think people may start to recognize me around town as “that lady” ala Forrest’s red hat. (Hopefully, I won’t grow a beard that long.)

While the Luka The Lion Foundation — our small and brand new 501(c)(3) nonprofit to honor Luka’s spirit and raise awareness for pediatric rare diseases and support patients and their families so they never feel alone —  doesn’t get any proceeds from my current streak of running through Charity Miles, we could. Just by starting a team and getting others to join and run — it helps with our application process to possibly, maybe be a charity that benefits from the app. And while that opportunity would be incredible, it’s really not even about that anymore. It’s that running to directly benefit a cause motivates me to get out and challenge myself to go as far as I can, and then simply turn around and go back.

It’s a parallel to the journey we were on with our son Luka who was born with a primary immunodeficiency disease so rare that it doesn’t even have a name and is thought by experts to be unique to him. He survived to make it to a bone marrow transplant at 15 months old, and then after many complications and much bravery, his body just couldn’t take it anymore and he couldn’t go forward anymore. Every time I stop and turn around in a run, I stop and take a moment to deeply connect with Luka and all the kids with rare diseases and their families who feel like, or can’t — turn around and keep moving.

So, that lady running all around Durham, North Carolina, and turning around — that’s me. I’ve been to the Duke Cross Country and Fitness trail, Duke’s East Campus Wall and Duke Gardens and the American Tobacco Trail from downtown to Hillside High School — increasing my miles each day from 3.7 to 4.8 and 5.3. Just like Forrest Gump, “I just kept running and running.” But it’s really not about me, and not completely the added motivation of Charity Miles.

And, although recent beautiful weather may play a part in all of this burst of energy, I think it goes back to what I’ve created in my mind as a “reverse bucket list.” It goes like this: instead of what you want to do before you die, think of it as what you want to experience while you are living. Even though I would trade in a second the opportunity to care for Luka anywhere — be it isolated in our house due to his immunocompromised state, going to the clinic for daily labs or infusions or living in the hospital for weeks, months at a time with no end in sight — I’m called now to use this newfound time and space to do all the things that we couldn’t do during Luka’s medically intensive two years. I’m called to live my bucket list in reverse — it’s what Luka couldn’t do, so it’s our turn now. In his last two days physically with us on Earth, I felt with a strong intuition that this was our destiny — not to die while we are alive, but to live despite death. So for me these last few days, I just kept running and running.

I’m thankful to the many people who have joined our cause. We run for Luka’s honor and to help kids like him with rare diseases and their families have access to basic emotional support as they take each step along the way.

So, let’s all move forward by experiencing our reverse bucket lists. In honor of April as National Primary Immunodeficiency Awareness Month, join me on Team #LukaTheLion using the Charity Miles app, and let’s challenge ourselves and each other the entire month to see how many miles we can walk, run or bike. It’s for a good cause and maybe we can get the important work of a brand new, small, all soul, all heart nonprofit on the radar nationally.
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