I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it. There is too much uncertainty involved, too much on the line, and while there is that chance I could win, there is a (bigger) chance (in my mind) that I will not. There is too much uncertainty when it comes to gambling, and while some people enjoy the thrill of the experience, it honestly gives me increased anxiety, so if I can, I avoid gambling at all costs.
In February 2015 our journey of near daily gambling began, but instead of it being one of those situations where if you lose you can just shrug, walk away, and still go on your merry way, it became a gamble where it turned out even our best chances would leave us pained and drained on all levels. There is nothing positive about making choices that will eventually backfire or provide more uncertainty. I, the person who doesn't even like to put my money into the stock market because I consider it too risky, is stuck being forced to gamble every single moment with my 2-year old’s well-being and essentially life.
Last night I was making my new desk calendar on Shutterfly, because this year’s ends on October 31, 2017, and so I began to look through 2017 picture albums. Every picture of Sonzee represents a decision that we made with the intentions of making her life the best it could possibly be. We removed a tube from her face, traveled across the country for medical advice, had her undergo surgery, try (and fail) multiple anti-epileptic medications, try various medications to help her GI issues, and had her partake in various therapies (that honestly haven't ever made a difference in her capabilities). When the tears entered my eyes, I was not sure of the exact reason. Was it happiness over the ones of her smiling or sadness over the ones of my three typical children smiling without her in the picture because they were standing somewhere she couldn't be, she was asleep from a seizure, or she was in the hospital? So many pictures involved the blue sheets of the hospital bed, hospital gown, EEG hat, or IV. Each one represented a gamble we took in her honor to help, yet ultimately failed her in the process.
I try my hardest not to look at our failed attempts as a reflection on our decision-making capabilities or my bad gambling luck. I tell myself this is just the deck of cards we have been handed and we are doing our best every day. I try not to get angry over the situation, because it is what is meant to be, for her and for us, but this gambling is breaking me down. Every decision if it has a positive outcome is short lived, and ultimately ends in heartbreak for us and it seems pain or discomfort of some sort for her. I wish there was a crystal ball that gave us the right answers on how best to help her, but there aren't any right/wrong...it’s just outcomes that come from the best decision we can make at the time with the information we have....
...but no matter what, it will always be a gamble.