I am not a runner by any stretch of the imagination. The only relationship I even have to the sport is through an old pair of Nike sneakers from high school and the Bumbleride twin-jogging stroller I purchased when we had our first two children. It was on eBay and I just wanted a discounted stroller. Running really is not my thing, but if I ever decide to participate in the sport, I am fairly certain I would prefer being a sprinter. My personality is much more suited for being a sprinter opposed to being a marathon runner. The finish line is closer, the goal seems more attainable, and the race itself is quick giving you immediate satisfaction and validation for your efforts. Yes, I would much prefer to participate in sprints.
Sam has said from the beginning that dealing with CDKL5 and Sonzee is a marathon not a sprint. He reminds me all the time of this statement. I say the words aloud multiple times a week in hopes of them penetrating deep enough into my brain that I can change all my ways of thinking. Yet, here I am trying to sprint my way through a marathon. As I said previously, I am not a runner. I do not know the first thing about marathon training. I do know it requires a lot of preparation. You cannot wake up the morning of the Boston Marathon and just decide to participate, I mean I suppose you could, but I can probably guarantee the outcome will not be desirable. To run a marathon you need to have a lot of dedication, you need to have patience, strength, and endurance. You have to be willing to spend months and years adding distance to your daily runs and putting up with all types of weather. You cannot just become a marathon runner.
I have found that no matter how many times I remind myself that this is going to be a long haul type of event, I am still stuck in my “immediate fix it” type of ways. This experience has been a HUGE test of my patience. I have definitely made improvements in that department but wow do I have a long way to go. I constantly want to do quick fixes for whatever discomfort Sonzee might be facing; unfortunately, there are no quick fixes. There really are not even fixes. Her seizures will come when they want, how they want, and in any form that they want. Her body will get sick when it wants, how often it wants, and in whatever fashion it wants. There are things I can do for her to provide comfort, but they seem to fall short in being permanent remedies.
It has been exactly a year since I first stepped foot in the ER and said the words, “I am pretty sure my daughter is having seizures”. I have now been in my training for 365 days. I am definitely more knowledgeable than I was a year ago, but I do not have many more answers now to the same questions I have asked or wondered throughout the months. These next couple of years are going to be difficult, I know this. I am attempting to prepare myself, but I would much rather fast forward. I keep saying, “Keep your eyes on the prize”, I do not even really know what that looks like. I know it involves some semblance of seizure control, but really, I just want the bear to be happy. I want her smile back and I want her cute little personality to shine through again. I am having a tough time right now in this part of my training. It feels like this is an insurmountable task, similar to if you ever asked me if I intended to climb Mt. Everest, Umm…No.
So, here I am in the midst of a marathon I was not prepared for and I am definitely more of a sprinter.