19 May Finding Hope in the Long Run

 I feel alive. I feel joy in the very depths of my soul. I am at peace. I even feel hope for the future.  The word choked me up. Hope. How many times have I wondered if it would ever get better? How many times have I worried that I was irrevocably broken? How many days have I spent feeling helpless and hopeless? Yet there I was on a dreary, cold, windy day and I felt completely free and beaming with hope.

Four years ago, my life changed in an instant. I found my youngest son, twelve month old Emmett, unconscious and wildly seizing in his crib. That one seizure would alter the entire course of our life. Additional seizures, scans, tests, therapies, medications, and hospitalizations turned our life upside down. Watching Emmett suffer broke me. It sucked the life and joy right out of me. I became a shell of the person I used to be, lost in the unforgiving darkness.

On June 20, 2012, Emmett was just 15 months when a team of surgeons broke apart his entire skull, removed it, and put it back together correctly. Emmett’s skull had formed triangularly and his brain was literally running out of room due to a birth defect of the skull called Craniosynostosis. The purpose of the surgery was to expand his skull and shape it correctly in order to give his growing brain enough room. I couldn’t just sit in a room and wait to hear if my baby boy had lived or died; I chose to do the only thing that made sense. I ran. On the tenth floor of the children’s hospital, in a small in-patient gym, “Emmett’s Endurance Event” took place. I ran the entire seven hours and twenty-six minutes he was in surgery. That hospital run sparked a love for ultra running I didn’t know I had and gave me a new purpose in my running.  It lit a fire from within. I was going to run for Emmett.

I proclaimed myself Team Emmett and continued to run and pace many of my favorite races, telling others about Emmett, Craniosynostosis, and even raising money for a charity that helps families and children affected by Craniosynostosis. Running made me feel just a little bit braver, stronger, and more in control of a life that felt completely out of control. Within those miles, I found a small shred of hope to hang onto. I could always find that shred of hope if I ran long enough and looked hard enough.

I felt the shattered pieces of my hope leave my body the day they found the lesion in Emmett’s brain that had bled. I was an anxious ball of nerves, devastated by fear for what this would mean for his life. There was only one solution. I took off running down my familiar dirt trail full of pure anguish and desperation.  The trees loomed ominously over me just like Emmett’s new diagnosis. The entire world looked different. Felt different. Smelled different even. My trail didn’t feel like home anymore. Everything was wrong. So very wrong.

I continued to run farther and farther away from the pain and yet right back into the pain. Emmett’s seizures raged on, even after the surgery. There were more hospitalizations, medications, therapies, tests, and two more surgeries the following year. The longer Emmett suffered, the more I suffered as well. I stopped eating. I stopped sleeping. I stopped laughing. Really, I stopped living. I was in a state of shock. I began spiraling downward and I couldn’t get a handle on any part of my life. The walls started to crumple in around me. I ran from the rubble and the ashes of what once was, trying to make sense of our place in this world. All I could do was run. It was the only thing that still made sense.

I was nearing the end of a six month training period for my first one-hundred mile race when we scheduled Emmett’s fourth surgery. The skull surgery was to take place just three weeks after my race and I agonized over whether to continue on or not. Was I selfish for wanting to do the race? Should I just focus on Emmett right now? What kind of person was I? After a lot of soul searching, I decided to run the race because I wanted to teach my boys to persevere even when life got hard. There were so many times I wanted to quit during those one-hundred miles. I wanted to give up. I wanted to stop the pain. I wanted to lay down and just wait for someone to rescue me. But I didn’t. I kept going because I had to. Because Emmett has to. I can keep going for him and because of him.

Emmett underwent his fifth surgery a year ago and I ran two additional one-hundred mile races. I love the feeling of finding myself lost in running. In those moments, life comes sharply into focus in front of me. I can see the ground I am gaining. I can feel grateful for the struggle because I have truly found myself in the process. I can feel hope surging up from the road and healing my once broken heart.  My son is alive and doing well, a gift that is too precious to measure with mere words.

Little by little, my trail gained some of its old familiarity. It will never be the same again though because I am not the same. I have grown into a person who sees the hope through the heartbreak and a purpose in the pain. I do not know what the future holds for us, but I do know that it will be okay. There is always hope in the long run. Always.