Whatever

I am so tired. Just the constant barrage of crap.  I want a break, just a few minutes to not feel bad.  I don't want any of this and I am so tired of feeling so out of control.

Nothing makes sense anymore. I cant remember what it felt like to feel things would be okay. It feels nothing goes in our favor anymore.

I hate steroids. The way they are affecting Robbie's behavior and that i keep giving them to him. Is it even even working?  Stupid athletes taking things like this by choice. Assholes.  Just so you can make a couple more million, wasting years of their lives when Robbie has to take them just 2 stay upright a few more years? I have no respect whatsoever for people that do this.

I hate how much our lives revolve around this disease, illness, condition.  We cant even think about buying a car, house,  well anything w/o wondering if it will be adaptable when that time comes.

I just want my damn normal life back.  I want to feel again.  I am numb. I have no choice I feel like it is numb or depressed that's all I have. My faith is nonexistent. I try to find it but I don't even see the point anymore.  Why is this happening to anyone? Where is God? He is a little boy, how is this even remotely okay.

We have to pay a 160.00 ticket we got on our anniversary for a stupid traffic violation Shelby didn't commit. Seriously world there isn't enough crap we are dealing with? I know that's nothing compared to everything else but it's like we had 1 night to have fun and we get a damn ticket.

How can we live in a world where this just happens? Why are people winning millions of dollars in lotteries yet we struggle to fund research for these diseases? Why do I have a stupid genetic eye disease the prevents me from even getting a few hours out of the house?  Why was I blessed w/ this amazing little boy if he was just going to be taken away from me slowly while I sit by powerless?

I yearn for other diseases. How sad is it that? I don't want Duchenne. I'm not a carrier. It just happened. A cell divided wrong and then boom... misery. 

Yesterday while I took a shower Robbie started having a monster temper tantrum. My girls were freaking out. I had to tell them to lock themselves in their room. Part of me died.  I know he was out of control but he was just yelling and I was able to calm him but I think it was the first time I actually really saw a steroid side effect.  I had to tell my girls to protect themselves from their brother. I hate myself for that. I know I did the right thing but it hurts so so bad.

Shelby and I have been fighting about really stupid stuff. It happen and we will get through it. Sometimes we only have each other to lash out at. We try so hard to hide the anger and sadness from each other. Each of us trying so hard to be strong. That can only last so long and then we blow up.  After the big blow up we can usually sit down and talk it out or cry.  We get so far inside ourselves that we forget we can share our load.

It feels like life is moving so fast. All I want is for it to slow down give me some time to enjoy life before that thing we can't ever talk about. We can never think about after.  We call it the "end stage".  I don't want his life, our family to always be in the end stage but it feels so close and I can't even let myself hope we find a cure before then because then it will hurt more after.

I had to get that out or all these feeling would cripple me for days. If you made through all that well I'm sorry I know it wasn't very pleasant.