On Monday, Gwendolyn ran with me. Yup, you read that right. For the first time, Gwendolyn ran with me. And it was awesome. Simply awesome.
This was a long time coming and I had planned months ago during my marathon training to start running with her. But for this reason (training injuries, lack of confidence, etc.) or that (Gwendolyn's strength, worry, trying something new, etc.), it just never happened. Until last Monday.
Unfortunately, it's not as simple as throwing Gwendolyn into a BOB jogging stroller, lacing up my running shoes, and hitting the pavement (which under different circumstances I'm sure would feel challenging). Gwendolyn's physical and medical challenges require some serious logistics — specifically a stroller that lays flat, has specific positioning adjustments, and can accomodate her life-critical machines: BiPAP breathing machine, suction machine, pulse oximeter, ambu bag. These jogging strollers just don't exist. So, with the help of some amazing friends and companies, we made one.
It's most important to thank — and I mean a HUGE thank you — to Chris Calafiore. Chris is Hayden's awesome dad and now a close friend of mine (if you are new to our blog Hayden is Gwendolyn's BFF who also has SMA). Gwendolyn's special jogging stroller would literally not have happened without him. We were very fortunate that ExoMotion/Thomashilfen managed to find a rare jogging base which worked with Gwendolyn's every day JAZZ EASyS stroller seat. And then Chris and a friend completely modified it to work for Gwendolyn's needs. Trust me, this was not a small amount of work. And it's perfect! Chris and ExoMotion, I'll never be able to thank you enough!
On Monday, Gwendolyn and I put on our NEVER GIVE UP. gear and we drove down to the Santa Barbara City College track across from the beach. It's so beautiful there and she was so excited and proud — she even had on her PUMA jogging pants album (pretty good choice to pump you up). And off we went — just me, Gwendolyn, my feet, her wheels, the pavement, and the ocean breeze. Me running with my daughter. Just as it should be.
Four miles later we were back where we started. It went perfectly and she loved it. I loved it. This is one of those experiences that is a major step forward for us. It may sound trivial to some, but to me it's not. Over the years — now almost four years after she was diagnosed with spinal muscular atrophy (SMA) — we've pushed ourselves to focus on what we can control, not what we can't. I don't know why Gwendolyn is still with us today, based on statistics she shouldn't be. But every day that I wake up and she's still here with us I try to live in that moment and provide Gwendolyn — and us — with a life full of experiences in spite of SMA. It's rarely easy, but we've found that if it's important to Gwendolyn or us or both, there is a way to make it happen. For me, this was one of those “things.” It was special. And it definitely won't be the last time we hit the pavement together!