My son, Robbie, was diagnosed w/ Duchenne Muscular Dystrophy on December 15Th 2011 at about 11am. I relive that moment every morning, I hear the doctor say that based on his blood tests his CK levels are extraordinarily high and based on his symptoms we are dealing w/ DMD. I feel my husband squeeze my hand, i see the doctor avoiding my eyes, and I feel my self choking down my anger and emotion forcing myself to hear what has to be heard. My family was changed forever in an instant.

I decided to blog about this not really for anyone but me. I mean I hope I can eventually help someone but I need an outlet I am choosing this. I am not going to sugarcoat how I feel and I wont be politically correct. Sometimes I think or feel things I don't even like but I am careful to allow myself that. I am still very much grieving and we are in the early stages of diagnosis and confirmation so i haven't even been able to contact the MDA or anything like that.

I am not a carrier of MD as far as I know. I was actually tested when I was pregnant for Robbie which I thought put us in the clear but turns out a 1/3 of the boys born w/ this come from non carrier parents. I wish I could say I am holding on to faith w/ all that I am right now but I can't. I am so angry and really questioning the existence of a higher power something I have never felt in my life and I feel equal parts right to feel like that and guilty that I do.

Every since we found out we have been flooded w/ love and support. Both mine and my husbands parents have gone above and beyond doing whatever they can to help even while their own hearts break. My friends both old and new have just surrounded me w/ their love and knowledge, I honestly don't think could ever Thank them for that in away that would be t all meaningful enough.

i would love to have a glass half full view of things right now but it isn't happening. Hope seems like such a great concept until its all you have. People keep telling me to enjoy the time we have. I hate that I want to enjoy forever. I want to hug him when he gets married and rock his babies to sleep. I want first cars and dances, I don't know how to be happy w/ 2-7 years before he needs a wheelchair and survival beyond the early 30's is rare.

My Robbie is such an amazing kid. He is so full of love and energy. He is curious and of all my children he is the most like me. He is loyal and easily hurt, puts family first, and really has never been that into sports. He also possesses a strength and fighting spirit that gives me strength and hope. We haven't told him yet, I don't know how or when we will do that but I think Shelby and I need to be a bit stronger before then.

I hope nothing I say here ever offends anyone but I am going to try to be honest even when it isn't pretty.