Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.

Emmett’s Endurance Event-the original

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Originally posted at http://www.runjunkees.com/junkee-logic/runjunkees-runner-of-the-week-kathy-sebright

I was staring down at my running shoes when they turned blurry; the tears I had been fighting back falling quickly and quietly. My legs were shaking and my heart began to pound wildly as I stared at the treadmill. I can’t do it. I don’t want to do it. What am I even doing here? Why did I think this would be a good idea? I glanced at my husband and saw a familiar subdued panic in his eyes – a reflection of my own. Every unreasonable bone in my body screamed at me to go, get out of here, get my son, get in the car, and drive as far south as I could get. I could feel the fear rising in my chest and I suddenly felt like I was about to be sick right then and there. It was now or never. I stepped onto the treadmill and hit the big green start button.

It is June 20, 2012 just another Wednesday for most people. But I am not most people. I am 3 hours away from home, on a treadmill in a tiny windowless room on the 10th floor of a children’s hospital. There is no amount of training, nothing I could have ever done that would have prepared me for this day. My 15 month old son is with a team of surgeons a few floors below me. He is undergoing a 7 to 8 hour cranial vault reconstruction, which means a team of highly skilled surgeons are cutting open my baby’s head from ear to ear, removing his entire skull, breaking the bones apart, reshaping them, and putting it all back together correctly with plates and screws in order to give his brain enough room to grow.Unbeknownst to us, our son Emmett was born with a birth defect of the skull called Craniosynostosis. The sutures in his skull were closed at birth, inhibiting his skull growth. For the first 12 months of his life, he was a happy, seemingly healthy baby boy. Just a few days after his first birthday, we found him unconscious and seizing wildly in his crib. This one day, this one event would alter the course of our lives forever. Not only would this lead us into a major, invasive surgery to fix his skull but routine pre-op testing would bring us completely unrelated, more bad news about his brain. As they laid diagnosis upon diagnosis on our baby boy – it was like an anchor around my neck growing heavier and heavier. We gathered a team of 16 specialists, we started forcing numerous medications down his throat each day, we went to multiple weekly therapies, and spent an insane amount of hours each week watching him undergo extensive testing and fading into the halls of the hospital.

The anchor was paralyzing at first, so heavy I could hardly bare it. In the midst of the worst turmoil I have ever known watching my little boy suffer so greatly, I did the only thing that still made sense, the only thing I could control. I went for a run. Having been a dedicated distance runner for about 8 years at that point, I knew the healing qualities in running. I ran and I cried. I ran and I prayed. I ran and I screamed. Sometimes the pain and anguish that came pouring out during a run scared me, but I kept running. I ran until my legs ached and my lungs burned. I ran until I could feel the anger, shock, fear, and helplessness slowly leaving my body. I continued to run in an exhaustive zombie-like state in between hospital stays and testing. Each time I returned from my run, that anchor felt just a little bit lighter. It was during one of our 3 hour back and forth drives to the hospital that an idea formed. I am not a woman of inaction; I can’t just sit in a waiting room like a normal person. I knew exactly what I had to do. I had to run.  I decided to run for the entirety of my son’s surgery; the greatest show of solidarity I could muster, the only thing that still made sense. If he must endure this surgery, I can endure my own special brand of pain in his honor and so I started training for the longest run of my life. I was no stranger to the marathon, but this would be far above and beyond what I had ever done. Emmett’s (virtual) Endurance Event was officially born. I made a Facebook event, a race bib with his picture, and encouraged family and friends to do something active on that day with me. It was a show of support for Emmett, even though he was too young to understand it, letting him know he wasn’t alone in this and raising awareness for Craniosynostosis in the process.

Back in the tiny windowless room, the monotony of my footsteps begins to threaten my sanity. It’s no longer soothing. It’s a quiet room with only my pit crew – my running expert husband and marathon running pastor. My footsteps echo loudly in my ears, to the point where I consider plugging my ears to drown out the noise. In my head, I am a thousand miles away: far away from this treadmill, this hospital, and this new life. In my head, I ran away from all of this. But in reality, I am here. Running and waiting in this agonizing state of the unknown.

To pass the time, my husband reads to me and shows me pictures from Facebook. Somewhere in the middle of our crisis, the most amazing thing happened. The running community and strangers from all over the world united with us for Emmett’s Endurance Event. I saw endless pictures of people running, biking, walking, golfing, jumping on the trampoline, gardening, swimming, Zumba, Crossfit, lifting weights, band practices, meetings, and more.  All of these people dedicated their workouts/daily activities to Emmett, holding up a picture of him. Hundreds of messages, prayers, and emails flooded in completely overwhelming us. We were rendered speechless by the response. I wasn’t alone in this tiny windowless room at all, over a thousand people were right there with me.

Hour 6 was the hour that almost broke me. I was physically more exhausted than I can ever remember being, I was running on empty and desperate to stop. Everything hurt – my legs, my feet, my head, and my heart. I was scared. I was tired. I wanted to see my son. I was choking back tears. But I don’t give up; it’s just not who I am, stubborn as an ox if you ask my husband. Failure was never an option for me. My son has no choice in his surgery and if he can’t stop, then I can’t stop either. There comes a point in every race when your heart must carry you because your legs can’t do it anymore. It’s sheer will power. It’s what you tell yourself you have to do, what you tell yourself you MUST do and right now my legs were taking orders from my heart.

Hour 6 is something that will forever live on in my mind. I will never be fast enough to be considered an elite athlete. In reality, I am far from elite. I am slightly overweight and although I run a heavy load of miles each week, I am still a comfortably middle of the pack runner. I am quite average and I have no qualms about that. All these facts aside, hour 6 made me feel like an elite athlete at the top of their game. I was all heart, all soul, all passion, gritting my teeth and bearing what I thought was once unbearable. Never in my life had I felt so very weak, but yet so full of power. I certainly didn’t look powerful but I was doing it. The simple fact that I was still moving was about as powerful a statement as I could make.

We did not ring in hour 7 with a picture and Facebook update as we had every single hour before. If you ask my husband Tony, he will swear my eyes were glowing red and I growled at him when he brought the camera over, but I’m pretty sure I just said “no picture.” One of my closest friends (and fellow runner) made a podcast for me to listen to and gave me explicit directions to listen to it when I was at my wit’s end. This was it. Hour 7 – there were no wits left. I cried and laughed in a barely comprehendible fashion. No doubt at this point, my pit crew was sure I had lost my mind. I listened to it over and over until the call finally came. My son was out of surgery. 7 hours and 26 minutes after I first stepped on that treadmill, a different woman stepped off it. One that knew there were no such things as boundaries and limits. I had run exactly 36.2 miles with an average 12:19 min/mile pace. It wasn’t about the pace at all, but secretly I was hoping to keep it in the 11’s. I told myself that is next year’s goal.

523674_3005112545226_513170556_nEven though I was exhausted and my legs were like jell-o, after a quick shower, I was rapidly walking down that hallway. I wanted to kick open those double doors, push everyone aside, and run as fast as I could to that recovery room. Just as I willed myself to keep running at the end, I now had to will myself to calm down and not start running. Emmett recovered from surgery well and went home within a week. He had 2 different shorter, surgeries since then as well but I did not run for those. He continues to face challenges with his health but is resilient and strong.

Ask me to talk about Emmett’s Endurance Event and I will start crying, every single time. People think they can’t make a difference in this world and that they are only one. But to someone like us, going through that, every single one of these people made a difference just by taking a picture, sending an email, and sharing in this difficult time in our lives. The people that participated in Emmett’s Endurance Event made a difference in our lives, forever.

On June 20, 2013 exactly one year after Emmett’s surgery – I took to my treadmill once again in an effort to continue raising awareness for Craniosynostosis. I collected names and dedicated each portion of my run to others to give back some of the support and encouragement we had been given. When I hit 7 hours and 26 minutes this year, I was just over 38 miles and so I pushed on dedicating my final two miles to my son Emmett. 7 hours and 52 minutes later, I had covered 40 miles with an 11:48 min/mile pace. It wasn’t about the pace at all, but secretly, I was quite pleased. Next year though, I want those 40 miles in the 7 hour and 26 minute mark

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