I struggle to put my feelings into words, at first I used to come here and just open up about all the things I was feeling but eventually it started to feel like a weight. Mostly because I had the predetermined plan for dealing with all this and when I didn't get to where I wanted to be I would feel guilty.
Sometimes words that should comfort me hurt. Sometimes jealousy makes it hard to function. Everyone around me got healthy sons. All my friends kids are playing soccer, baseball, football, and my kid is struggling to walk up stairs. My brother, dad, husband, my father in law, and my brothers in law aren't suffering from dmd. My Grandfathers, Shelby's Grandfathers, our uncles, cousins, are free from this. I don't wish it on any of these people but I can't help be jealous of their mothers which I know includes my mom.
I know every person has their mountains to climb. I know that as horrible as DMD is, there are worst things. At least my brain knows this. My heart it's broken and frankly it wasn't that logical to begin with.
Some things should inspire me but a lot of times inspiration makes me feel lacking. I want to be full of grace and strength when instead I am fat and tired. I wonder if my kids remember when mom was a decent mom, I wonder if they will have her again.
We just finished serial casting, it was successful but another part of my soul went with it. Seeing Robbie crying and screaming at night because it was painful or irritating and having to say " I know baby, but it will help your legs. Just a few more days." Was like punching myself in the gut. Next he gets fitted for ABO's, I didn't think this happened at 6 but that's because I just simply wanted it not to happen at 6.
A visual thing for the rest of the world to see. This to be real for everyone he sees. Will people be mean to him? Of course someone will, kids are mean. I know kids are mean to him already. It's not fair he's just a little boy.
Not every day is a drama filled shit fest. I don't want to leave that impression. Most days I can push it all down and pretend. I don't know if that's healthy but sometimes you just have to keep going however you can.
I have gained an obscene amount of weight in the last year and half. It's simple I feel bad, food tastes good, I eat too much. I sleep too much or not enough. Some night I go to his room and I just watch him. I try to freeze that moment in my mind. When he is just a boy having dreams. I remember when he was just a boy. When people didn't see him and compare him and his abilities to their own children/grandchildren. When going to the playground wasn't torture for me.
I need to keep going to make it over this hurdle and the next. I do, sometimes kicking and screaming, throwing a Madison fit but eventually I stand up so I can be knocked down again. Over and over its up and down, anger, then acceptance, regret, then a little happiness.
It's become normal. The shock is mostly gone now. I wonder will I always feel like this? Will there always be a black cynical cloud in the deep recesses of my soul? Will I ever feel relaxed again? Will stop I eating?
The he comes into my room at nearly midnight to show me the alien he drew on his belly with a pen. It's his baby and he's pregnant he says. I'm laughing at his silliness. He hugs me and goes off to bed. No matter what I say, no matter how much this hurts, I am better because I get to be loved by him. Maybe in the end I was the mom that could love him through this. No, I am not perfect or super strong, organized, or skinny, but I'm mom and mom is all he asks for.
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