June 20th. For years, it was just a simple day; my mother in law’s birthday actually. 3 years ago, it became something else entirely just like I had. It became Emmett’s Endurance Event. It became the day that I stared fear in its cold, dark, unforgiving face. It became the day that I got my first glimpse of the amazing community that we are surrounded by – where love and support flooded in so greatly that we were left floating in it. It became the day that I learned I was capable of so much more than I ever gave myself credit for. It became the day that I discovered a passion for ultra-running that would continue to change my life in so many ways. It became the day that we survived, together.
I ran for exactly 7 hours and 26 minutes on a treadmill in the children’s hospital on that incredibly long June day. I ran while they broke apart not just the skull of my sweet baby boy Emmett but while they broke apart my entire heart and soul. I would never be the same again; I just wouldn’t. I didn’t know then that there would be more surgeries. I didn’t understand then that the struggle would continue long after that day and that fear had only shown its face that day. I didn’t realize I’d soon meet fear in person when they scanned Emmett’s brain. I had no idea the road we were about to go down.
For the past two years, I have continued my tradition of running for 7 hours and 26 minutes on the anniversary of that day. But this year, I’m not going to do that. Because at the end of last year, Emmett had two additional skull surgeries that cut my heart open
once again. So I’m not going to run for just the 7 hours and 26 minutes. Instead, I’m going to pay homage to all of it: the hours he’s collected from 5 surgeries so far, the hours spent in the hospital, in Doctor’s offices, and in emergency rooms. The tears of pain and frustration, being poked and prodded at, sleepless nights, undergoing tests, scans, therapies, blood work, and having medication after medication jammed down his throat. I’m going to take it all and use it to run for 100 miles on June 20th.
When I think back to the last 3 years, I can tell you it feels a lot like an ultra marathon, like 100 miles of absolutely terrible, overwhelming struggle and triumph. There were times when I felt so alone, completely and utterly alone. Like it was 3 am and I was lacing up my shoes, about to do something that most people can’t even fathom. I stuffed every emotion and pain down as deep as I could, unwilling and unable to find the words to ask for help as I ran through the night on a path that I wasn’t sure would ever end. At times, I was surrounded, completely and utterly surrounded. When I was sure I couldn’t go on, people were pressing in from all sides. Their shoulders pushed up against mine, pulling me forward with them as I shuffled my feet in a daze.
There were times when I was screaming in agony and crying desperate tears that wouldn’t stop. There was misery and unbelievable suffering at points. There was doubt and fear that I was not who people thought I was and that I was not really strong enough to make it. There was the sweet allure of just giving up and questioning why I would ever do this to myself. There were tears of joy from doing what I once thought I couldn’t. There was pride that overflowed from my very being from surviving and digging deep. There was hope that I would get there, somehow, someway, I would do it and we would all be ok. There was love; love beyond words. Love in the face of a man that has seen you at your very worst and loves you anyhow. Love from friends that will show up all hours of the night, whenever you need them and do whatever you need them to. Love from family that will always come through no matter what else is going on.
There was all of it, mashed together into one heartbreaking beautiful cacophony of mess. That’s what watching your child struggle with his health feels like. That’s what running 100 miles feels like. It’s all of those things and more. It’s raw and real. It’s awful and full of hope. It’s pain tinted with joy. It’s who I am and what I do.
So on June 20th, I will run for 100 miles for Emmett, for me, for our family, and for everyone who has ever been in our shoes. I will continue to tell the world about Craniosynostosis, a birth defect of the skull that inhibits brain growth. I will bang that drum loud and clear in the hopes that more awareness will keep another baby from going undiagnosed as long as Emmett had. It all started with Craniosynostosis, but it’s about the rest of it – the brain lesion and epilepsy too. I do this not to continue to hang onto the darkest moments of our lives, but rather to bring light into them and in the hopes that it might make a small difference to someone else. Because that’s what this 100 miles is really all about. Hope.