Some people may be wondering what crazy pill I took now to make me even think I wanted to run, let alone run a full marathon. That is a fair question given my health history, and my lack of athletic ability in the past oh say twenty years (I will remind those of you who didn't know me in my previous life I was a softball pitcher, I swam on the swim team from middle school through my senior year - even the year I had a complete colectomy - just six short weeks following that major swimmer, and most importantly I was a figure skater since third grade. These sports overlapped and there were many days I went from one to the next - especially during summer months when I had two a days for swimming.) But yes that was many, many years ago. I have gained weight from stress and other things, I have struggled with pain that ultimately after thirteen years turned out to be an autoimmune disease that left undiagnosed has given permanent damage. I have two little kids who fill up my hours and minutes, a house to maintain, a job to attend, a business to run...26.2 miles sounds like an amazing idea. Wait...you have to train for that? Just kidding!
I distinctly remember sitting in Charlotte's hospital room during one of her many admissions this spring. She was in for respiratory stuff per her usual, she was not doing the greatest. I was sitting in the reclining chair, and my best friend was on the couch, and I said to her, "I think we need to start checking off some of Charlotte's Joys". Her eyes got excited, and she responded - "Like the Hawaii one?!?" I well yes I supposed, but was thinking more along the lines of the marathon. This beautiful soul, who knows my soul like no other, and also knows the chaos of my life responded "A full marathon Tracy? How about we do a half, it would have the same meaning." I can only imagine the smirk I gave her when I responded that "no, I think we should do the full." Why would we stop at a half? I do nothing halfway. And so a full it is.
The marathon represents many things for our family. For Charlotte it is checking a joy off her list - she will feel the glory of the wind racing across her face, blowing her hair. She will hear the crowd cheering for the runners as she whisked by, and she will feel the celebration of crossing a finish line, a battle from start to finish, but there is a finish. For me, the training, the physical, painful, training represents the physical, painful things Charlotte has no choice in experiencing so often in her days. The dedication and the hard work it represents every ounce of strength that Charlotte puts into her therapy sessions, even when all you can see are muscle twitches - faint enough that if you blink you miss it, but they are there, and believe me, that muscle twitch is a marathon for her. Most importantly, the marathon for me is my "Take back my life" mantra. And as cheesy as it may seem, I am very drawn to the words of Rachel Platten's song "Fight Song". It almost always comes on in the midst of my run, when I am hitting my wall, and it truly speaks the words of my heart. For far too long I have been buried in grief about things I cannot change. So buried that I at times I have missed what is going on around me. The training for the marathon has given me the spark of life back that I needed in order to experience my joy in life. It hasn't taken away the sadness and the grief, but it has given me life.
In this spark of life has grown a desire to spread awareness, and while Charlotte is experiencing her Joy to the fullest I hope that she is able to be a vector to create awareness about SCN2a and catastrophic forms of epilepsy. The fact of the matter is that most people probably know someone who has epilepsy. Seizures are common. The number of people who know someone who has hundreds of seizures a day is much smaller. It is rare, it is devastating, and there is a whole population of children who have SCN2a and other serious forms of epilepsy that debilitating, horrific, and not something they will ever outgrow as you so often hear from innocent strangers that do not know any differently. I hope and pray that the marathon puts SCN2a on peoples radar, that it forces people to start talking about it, and maybe raises a bit of money to support research so that someday another child and family does not have to go through what Charlotte is faced with. I also hope and pray that in running the marathon Charlotte helps others find joy in the simple, joy that is present every second of every day - maybe a gentle breeze of cool air in a moment of silence, maybe a sound or smell that reminds you of times long gone, or maybe doing something you never thought you could ever do in a million years. Whatever it is JOY is there, it is there in the good, it is there during the bad, it is always there and surrounds you. If you take the time to breath it in, you will be amazed at how much better life is!
If you are interested in purchasing a Seize Your Joy marathon shirt I am including the link for the booster below. There are running shirts, and cotton shirts. Proceeds to go to the FamilieSCN2a Foundation to further support research opportunities. https://www.booster.com/team-seize-your-joy
If you are interested in making a donation, we have a fundraising team set up through the following website: https://www.razoo.com/team/Seize-Your-Joy. Donations can be made under any of the team members. All funds raised will also be going to the FamilieSCN2a Foundation.