have you ever started a sentence with:"If it was my kid..." I know have and then one day it was my kid. My kid that was sick my kid the insurance companies would prefer not to cover. You cannot possibly know how you will handle this kind of thing until it is your kid.

I always knew finding out your child had a fatal disease would be devastating but it's so much more then that.  the multiple hours every single day that I have to pretend I am fine weigh on me.  When Robbie is running around playing w/ other kids, I am a nervous wreck. so afraid he will get hurt.   every time he tells me what he wants to do when he grows up my heart stops for a milasecond before I smile and nod my head. I have to keep hoping there really is a future because well the alternative is incomprehensible.

Everyday when I wake up, it hits me again. I have to fight through this feeling of overwhelming sadness and stand up.  I have to go and be mommy and put a positive spin on things like medicine and heel cord stretches.  For the record positive spin on heel cord stretches is pretty  impossible but I try.  I think the real battle in all this inst the fight for a cure because all i can do is  raise money and raise awareness. the real fight is finding a way to smile, to keep my family going, my marriage strong, just keeping the normal in the face of the extraordinary.

i don't always win every battle.  There are days that living w/ muscular dystrophy just hurts.  Days where I can't find comfort in research and hope. days I cry at a drop of a hat. Some times Robbie will be walking and he will just fall. Shelby and I we know when that happens, why it's happening. Our eyes will lock and we look away before the tears come.

Yesterday I stupidly read a yahoo story about a family w/ 2 boy and clinical trials, it wasn't so much the article as it was the comments that bothered me. every time I read "If it was my kid..." i wanted to explode.  Its so easy to speculate what you would do when there is no reality to it.  Honestly, it is my kid and i know don't what to do most days. what battles to fight, which clinical trials to investigate, what misbehavior is from the steroids,  the answers that seem so simple and easy before are just damn hard now.

We never hear the inside story. We always hear about strong moms that fought for their kids education or conquered this law, or whatever but that cant just be what happened after they got their horrible news.  It's hard for me to read things like that, it makes me like I am somehow failing or not strong enough. it gives me a goal.  I want my ugly, scary, angry thoughts out there.  i want other moms to know that i m fighting but I am hurting too.  that sometimes I wake up and I can't force it down and I am hurt. that it is okay for me to be mad and sad and not be able to be wonder woman. Not sure if I am making sense at all today.