I was working on the last post yesterday and as I try to do, I was looking at the situation as calmly and rationally as I can. I try hard to not sound like I'm whining or always being like, "oh woe is me" but then we watched the show, "A Gifted Man" last night and one little thing in the show induced a little sobbing break down that caught me totally off guard. A little girl in the show had the Chiari Malformation that Lucy does not have technically, but is considered borderline in that her cerebellum is only very slightly lower than it should be. In the show the little girl was in a car accident and her brain started to hemorage because it got pushed down even lower and they didn't even know she had the malformation in the first place until this accident. So she nearly died and then I just started bawling because what if something like that would happen to Lucy someday. That's what made me cry, but then what really made me lose a little control is The effort I put into trying to remain so rational and accepting as I described in the previous post.
As I was crying and talking to Chad, I said that I know it is our job to not sit around crying all day about the things we worry Lucy is missing out on, but I just get really super pissed sometimes and I have to let it out! I want her to walk and I want to see what that looks like! I want her to talk and I want to know what she thinks and what she knows! I want to freaking know what is causing all of this and I am NOT ok with not ever knowing. It sucks! It sucks for her, it sucks for us and I just want it to be better. When people say that no one ever said life's fair they are right on the money because it most certainly is not. I don't know why humans constantly expect it to be, but maybe we are just inherently optimistic creatures, even cynics seem to still expect a certain amount of "fairness" in their lives. And then even when something happens that is not fair, I still sit around being like, "hey, no fair!"
In addition to simply suppressing the frustration and anger that I feel, I acknowledge also that I put an incredible amount of pressure on myself to make things better. I am constantly, CONSTANTLY worrying that I am either not doing enough therapy stuff, or I'm doing too much and not just letting her be a baby enough. I think I am literally in a hidden, low-grade panic for most of the day just worrying about doing the right thing and trying to make sure that everything that happens in Lu's day is as beneficial as it can be...without being too overwhelming to her. Every second counts I guess is the way that I look at it and so on top of just being mad, I also stress myself out pretty regularly which then contributes to mini little meltdowns.
So yesterday's post did not have a title until I started writing this one, like compare and contrast I guess. These two posts are like pictures of actresses with all of their makeup on and then without it, like the tabloids like to show sometimes. But honestly, I wear all of that "makeup" (metaphorically speaking) more for myself and chad and Lucy, just so we are keeping it together, than for the outside world and sometimes it is exhausting.
PS. Even though that episode made me cry, I very highly recommend the show A Gifted Man, it is one of my new favorite shows!