fight

I keep waiting to wake up from the nightmare that is my life. This can't really be happening. This happens to other people. I watch their stories on Lifetime. i say wow I couldn't imagine. I hug my kids and thank God I have 3 healthy kids. it is the saddest thing ever to not be able to say "at least my family is healthy."

There is a part of me that will never be the same again. there is an anger so deep and so horrible that it scares me at times. I said before , I really mean it, I am not accustomed to being angry like this. I am usually a glass half full kind of person, so this bitter, dark feeling is not something I handle very well. For every good day i have there is 2 or 3 days of grief and anger and just general sadness.

Before we found out even before I shared  w/ anyone my deepest fears, i read of another woman going through the things we were but her story ended the opposite way.  I really thought that would be my story.  I was actually planning my facebook post when I would tell everyone about the testing and how happy we were that the test came back normal.  i didn't get to post that. 

I am so happy we have a vacation coming up. I think our family needs it more then ever. No appointments,work, school, dishes, cooking. or laundry.  The thought of just being a family is so exciting. i know we cant escape the realities of our life but sometimes you have to take a break or you will go crazy.

I feel the need to say this for some reason... i am very blessed to have my 3 children. Even though this is the most horrible thing I can imagine right now, I feel like it has to mean something. i am not going to try and figure out why this is happening because i do not think there is a reason in the world that would be good enough, but i am not going to just sit down and wait for the end.  I have read so many things about the end stage of this disease but frankly I will not be speaking or typing those words again.  I will not speak of Robbie's life expectancy because, well its morbid.  I will keep posting here, on facebook, anywhere to get the word out. i am going to fight like hell.  This disease has had way too much power for way to long.  Awareness is the best thing any of us can do for Robbie right now. i encourage people to share what my family is going through not because I want the whole world to be sad i just want the whole world to know about this disease. Not just clovers and telethons, i want yogurt caps, and celebrity ribbons.  Awareness is the key to research.   Research is my sons only hope so please join me in this fight.

I just want to mention again because I haven't in a while, Shelby, the kids, some of our friends, and I are participating in the 2012 MDA Muscle Walk.  We are doing this in Robbie's honor. Our team is very close to our goal but we need just a bit more.  Please remember every little bit counts and makes it easier for the MDA to help families like ours. Just click on my blue icon and you will be directed to our team page.