Angry

I can't even begin to sugarcoat this.  I have never in my life felt so angry. Not even on the day of the diagnosis did I feel this much venom.

Kids are doing horrible things to my little boy. Traps they call them. Basically tying him w/ jump ropes or forcing him into the middle of a hula hoop they pull around forcing him to run until he falls. Its so evil and mean I can't wrap my end around it.

He tells me he tries to get away but they get him again because they r faster. This is at school in the playground where I am legally obligated to send him.  He is supposed to safe. How is this happening? Why isn't anyone seeing. Does anyone there care.

I don't even know where I go from here. I emailed the teacher. We are going to call the principle. I am terrified they wont listen. I know he telling the truth. He finally saw an opportunity to open up to us and he did but I am so mad at myself because I should have done this sooner. I should have known I am his Mommy!

Twice he has come home w/ band aides on his thumb and a weird vague story. Both times I let it go thinking he falls Nicole it's nothing new.  I never imagined kids good be this cruel at this age.

They never do it at 2nd recess because he books it over to where his sister can meet him and she's seen 3 kids following him. They run away when they see her and her friends. Chicken shits.

I wonder who raises a child to think its okay to pick on the kid that's slower then you?  I mean this is torture for him. What kind of human can do that to another?

I should be asleep but every time I close my eyes I see these things happen to him.  I don't want him to go to school in a few hours. How am I supposed to do that?

He asked us if it's a good thing to have muscular dystrophy. I think we should have said it's better then being a bully. How is this happening?  Pushing him off swings, headlocks, what the hell is wrong w/ this world?

what needs to be said

This is my space. This is the place i go when the stuff in my head has to come out.  There is no expectation here, no limits to what I will say.  when my life changed from ordinary to  terrifying I turned to the one thing that had always been my outlet.  i write.  It's not about my words being pretty or correct or even helpful for anyone outside of myself.  Don't get me wrong I would love it if my words touched someone but this blog was meant to be my place to let everything in my head out.

I haven't been blogging.  sometimes I think seriously no one needs to read one more page about my anger.  I do though.  My anger is real its almost a part of me and so many times when I am trying to find support on this crazy journey I doubt myself because everything I read is about being strong, fighting, soldiering through,and raising awareness, that's great but its not a complete picture. 

I have all those things inside me of me all the same desires to change the world for my son, to make wallets open, and get us the scientific breakthroughs we all desperately need.  I am sad and really angry.  Robbie is not a statistic, Robbie and his sisters are my life. My heart is broken.  My life was shaken and changed in an instant not when the doctor confirmed my  worst fears but the day i read the symptoms the day i realized it wasn't happening to other people.

I can't move past being angry because i'm still angry I don't think I will ever not be angry.  I mean a little accident when a cell divides and your child gets a death sentence.   

My sweet troublemaker that never hesitates to say he loves me and tell me i'm mean in the same breath.  this smart and wise little person has to struggle because of what?  A cell?   i won't apologize for being mad or sad or anything else.  i will not make Robbie apologize for anything he feels because we don't have the time to bull shit around and make it pretty for anyone else.

i have talked a lot on here about struggling with my faith.  truth is I don't struggle I know God is real, I know heaven is real. I believe  that beleif doesn't mean acceptance of this challenge   it doesn't mean I say Yes sir and line up.  No it means I be honest with what is in my heart.  It means i rail at god and cry and beg him for strength.  it means i stand up and fight against my son being a statistic.

i am faithful, i always have been not because it gets me something or makes me a better person.  My faith gives me hope when i can't find it anywhere else.  My faith leads me to a more liberal view of the world.  my faith give me the strength to question what feels wrong in my heart.  

I love my child, all of my children, their lives are important and it's not okay for them to be shortened or difficult because they drew the short straw.  I want them to see that their mother she stood up and said what was in her heart even if it wasn't okay with anyone around her.  I am proud that my kids jump into charity, that they have empathy, because I show them its okay to feel mad or sad or happy or crazy.

My story, my journey is unique and not at the same time. Mine is not the first child to bear this load.  It is time for this disease and the prognosis to change.  it is time for everyone to know what duchenne muscular dystrophy means.  No cure doesn't mean he is saddled with this his whole life no cure means he will die from this disease.  DMD was here before HIV and affects innocent children.  Death cannot be the only way  out any longer. So yeah I'm pissed, i got a reason to be.

Mom

Thank you. June 1st is the best birthday ever so thanks for doing that whole labor thing on June 1st.
Thank you for answering the phone when I called in October right before Robbie's IEP, for offering to come over and staying on the phone with me until I quit crying. 
Thank you for spending $400.00 on a plane ticket so you were there on the worst day of my life.
Thank you for making the best chocolate cake ever.
Thank you for taking a vacation Day in the summer when I was 12 and spending the day at the water park w/ Brad and I.
Thank you for the amazing Christmas we had every year.
Thank you for taking us to pizza Hut after getting through all those bookit books.
Thank you for telling me to wear flip flops in the shower while camping.
Thank you for being honest with me in the years my body was changing, for answering every question I ever had including "Whats a B.J.?"
Thank you for staying up and listening to me cry when I got my heart broke but letting me get through it on my own.
Thank you for sending me to California that summer I was broken.
Thank you for all those trips to the dr when my throat was hurting.
Thank you for making me compare everyone blood drawing abilities to yours.
Thank you for loving Shelby
Thank you for teaching me to laugh. 
Thank you for taking me to see Billy Ray and those free concerts in Wyandotte
Thank you for teaching me to protect myself when I started making adult decisions.
Thank you for letting me feel, say, and deal with this anyway I need to. For defending my right to feel what ever I need to feel.
Just Thanks for being my Mom.