Contentment

I miss feeling content. i feel like all the security in my life has been ripped away. I miss feeling happy, truly happy not trying to be happy while pretending life is okay. I don't want muscular dystrophy in my life, at times its so damn unfair it physically hurts.

I am so sad i don't even think its describable. Even when I'm happy it isn't all there. I don't laugh and smile the same. i probably never will. Every second my our life seems so fleeting, so fast,and enough. I am so tired of doctors, bad news, and frankly horrible bedside manner. do you know every time we go to a specialist we have to explain why we are there. Oh my God, I hate that, i just want to yell at them. Saying those words it's just , i can't it hurts because every time I hear / say them I think about how I am going to lose my son.

i don't want to go through this. i just don't and even though I want to fight I would much rather it just go away. i can't understand how this happens. we make child in love, i follow all the pregnancy rules, I have C-section, hes born, we watch him grow, we think everything is good. then it's not. a mutation in exon 45. that's what happened. No reason, no explanation,no direct genetic history. just stupid dumb luck, or gods will, or what ever crappy sentiment we use to explain the unexplainable.

It still seems like it can't be true. I know it is but i mean it can't be. When I go to his school and I am looking at all the other boys. 4 and 5 years old, they seem so similar yet their muscles are not slowly breaking down inside of them. i don't wish this on any other boy i just want to know why us, why Robbie? He has been a real pain in the butt the last few days and I hate myself for thinking that no matter how true it is. I hate disciplining him. I have just been told that his life is limited, how I hate wasting time yelling at him or grounding him. I know i have to but it sucks.

i keep thinking it will get better but I am guessing it never does. Eventually I will learn to live w/ DMD but i can't imagine this pain going away. I want a cure. I don't want some bullshit 5 more years. I want him to have a future. i want my girls to have a brother forever not a freaking memory. I want to have my son until i die. That's all I want.