functioning

Shelby and I are having a really hard time this week. Its hard for us to go bed at night and hard for us to wake up in the morning. The kids have been late to school 4 times since Christmas,I barely cook, and both of us yell way to easily.

Honestly some days I don't know how to live w/ this. Yesterday his physical therapist told Shelby we need to use plastic cups in the house because they will be easier for Robbie. It's really good advice but it hurts so much to think someday he won't be able to pick up a glass and drink from it.

I can't handle reading about this disease. You can only read there is no cure so many times before rage kicks in. I look at my beautiful boy and I think this can't be true. I mean how can this be true? The DNA test results kill me. they basically say theres no chance they are wrong. I mean the only chance is if there was a mix up between his blood and someone else's blood. He had a speech delay and now he has a terminal illness. Robbie has DMD and I can't do anything and there isn't any more chances for a different answer.

I want to get back to normal but normal is a joke to me now. The life I thought I had is different now. A part of me died on December 15th. I used to believe in a plan now i can't say that I do. I believe in God but I am not sure there is this plan I am not smart enough or all knowing enough to understand. This is a cruel horrible thing to do to my kid and I can't take any comfort in a plan that this is part of.

i really wanted to post about the muscle walk I am going to participate in w/ my friends and family but this all came out so looks like a 2 post day.