Sometimes...

There is joy in our life. Sometimes we laugh and we don't feel sad. Sometimes it's 3am and I am tired and Robbie wakes up up from a nightmare and I don't want to discuss every single thing he can think of to keep from going back to sleep. Sometimes I am just a normal mom making dinner, telling someone to turn the TV down, yelling at someone to share(I have three kids I do this hourly), and explaining math to my 8 year old. I am not different then anyone else except that my son is sick from a disease no one can stop. This is not about the tragedy of that because trust me that never goes away but the sometimes are important too. I would be doing a disservice to whoever is reading this if I didn't share the things in my life and Robbie's that aren't tragic.

My life is beautiful in many ways. My son is a gift no matter what the future holds. Last night he told me I cook better then McDonalds, and he ate 3 servings of my food oohing and ahhing the whole time.He's always a cheerleader when I am in the kitchen. He always has a question, he has to know how things work and why. He hugs w/ his whole soul it seems. There is nothing quite like a Robbie hug, nothing. Robbie makes me laugh just about everyday, the way he sees the world half innocently and half wise is kind of awesome.

I am sad at some point everyday. I am happy at some point everyday too. it's important to say that. I want everyone to know that while most days the sadness is almost crushing life also has to go on. None of us really know what the future holds. Yes, in my life there are staggering statistics staring me in the face but statistics are just numbers. I am not saying I don't give into those statistics sometimes or that the words fatal or terminal do not come out of my mouth regularly but I work hard to make sure i don't get consumed by that.

I want to take my kids to Disney World this spring. Normally I would list a number of reason why I should wait but right now i say screw it I am going to do it. We want to visit some family in Florida in April and hit a beach so we are going to do it. I know one thing right now and that is that Life is short and I won't get these days back. i guess thats 2 things.

I am still super pissed this is happening. I am very pissed that this happens to 1 in 3600 boys and I barely knew a damn thing about it besides that it sucked. Think how many of you had to google DMD(me too so don't feel bad) now think how many kids are in your school district or your town? This isn't that rare, in my opinion which i realize is a bit bias it is downright way too common.

I want to raise awareness. HIV cases went down by the end of the 90's because people were more aware. People can fight cancer and have a chance of winning now because awareness was raised and people started researching. If I can do anything it is yell at the top of my lungs until things start moving. Don't misunderstand me, I know there are many, many, many amazing people working on this and I don't want to discount their work but I want more of them. I want the world to know this is happening to my baby and it shouldn't be. No family should go through this.

I am walking in the MDA 2012 Muscle Walk in honor of my adorable little boy. I am walking because my family and lots of other families need the MDA. Please help our team. Just click my blue icon and give what you can. It is not about how much you give. Every single little bit will help make a difference to someone like me and my family.