I lied to Robbie today. I gave him the steroids for the first time today. He asked why so i told him to make his muscles strong. It makes me so sad to think how very untrue that is.

This week has been very hard for me and I suspect it is just the tip of the iceberg. Sometimes I am just sitting on the couch watching TV and I see a man on TV and I think to myself " It is very likely I won't see Robbie become a man or at least a walking one." That is so unfair. It's no more unfair for me then anyone else w/ a sick child but it is unfair.

i am consumed w/ guilt all the time. i know there was a mutation when cell divided and i keep think I did something that caused it. I was drinking 2 days before I found out I was pregnant, I had a fever and a sinus infection and it took a whole week for me to get treatment. i took antibiotics, maybe i had too much sudafed while I was pregnant. I just want a reason why this is happening some person or thing or experience to blame.

This forces you to enjoy the little things in life. Dinnertime is more important and I worry way less about right and wrongs in life. If i want to pull my kids out of school for a few days to visit family or go on vacation I am certainly not going worry about what the school has to say about it. The truth is I don't know how much time we are going to get well I suppose that is true of everyone. I do know though that my son has a degenerative disease and that my time w/ him could be shorter and I refuse to miss something important because of some stupid threatening letters because a of a piece of legislation that seems to have helped no one. Oops soapbox sorry, it happens every now and again.

i actually lied to Robbie on Friday it just took me a few days to finish this.