I'm overwhelmed with everything and so stressed...not sure how I'm going to get everything done that I need to get done. My brain is going a million miles per hour and even when I got time to do stuff, I don't. I don't get why I just cant formulate a plan and stick to it like anything else. Its almost like my "time" is being counted down, then once Monday is over maybe that ticker will reset?
I hate feeling this way. I hate that I feel like I'm on an emotional roller coaster, lots of ups, and lots of downs. I almost feel like I'm going crazy feeling the way I am. Its like I can laugh one second and be in tears the next. Its really weird and I don't know if this is "normal", "expected", or if I'm literally going slightly mental. I do know that a lot of my stress is related to the back and forth that keeps happening with the two centers, remember that Dylan will be in one end of the Hospital (LPCH) and I will be in the other (Stanford). I know they are used to doing things and organizing there chaos the way they do but I wonder if they ever take into consideration that the person on the flip side of it all is getting mentally tossed around. I just don't get how so many different people can tell a story so many different ways, and is this how its going to be on operation day? I hope not. I just want know what's going on but maybe I now know too much, maybe its not all organized and maybe this is just how it goes.
I think about the upcoming day a lot and can't help but wonder about this or that, think of the "good", as well as the 'bad", and ultimately all I care about is that my son is ok. I have heard statistic after statistic, great stories, and bad stories. I have gotten the pleasure of meeting some personable docs and not so personable ones. The end result is I'm just looking for a miracle, I'm just looking to whomever it may be to give me and my family the strength to make it through the next few days, then the ones following that. Day by day, night by night. I look forward to being able to see my son laugh, play, and be on minimal medications....all of these things seem so far away and almost unattainable with the mountain we need to climb first. We aren't even in the first stage of the race, we are just starting the engine and warming it up. This battle seems ongoing with no end in sight.
Lots of folks think that this is the "fix", this is the "cure" and once we get past this all is forgotten...I wish I could feel that way but this isn't the case, that's not me being negative but rather realistic. This is purely the step that is needed to keep another breath in my sons lungs and another day that I have purpose in my own life. They say tragedy brings and enlightened state of being. I say ones enlightened state gets them through that very tragedy or dreadful times.
I posted this old image of my son, he was less than a week old in this picture. We were new parents, proud parents, and by the looks of my hair not quite as stressed (can't believe I had nice dark hair). I was never given a book on how to deal with being a parent, let alone how to deal with being a parent that needs to support a chronically ill child. I know I have done lots wrong in my life, lots of mistakes, lots of pain put on others when they never deserved it. I hope that somewhere, somehow, somebody forgives me for the wrong(s) I have done in my life and just gives my son the chance that he needs. I just want everything to be ok. Nobody can guarantee me that, nobody can say for sure me and my sons fate just a few short days from now. New beginnings? Or new tragedies? Time dictates all...
-Noah
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