Mexico

It's 7:50 he is out of the shower and sitting my lap. He smells of superman soap and strawberry shampoo. We are talking about the xbox game he plays w/ Daddy and Kelsey, they have finally made it to the Mexico part. He's really excited and he's going to show me the next day after school. I tell him we are going to stay at a Mexico themed hotel in Disney, he asks me if there will be cowboys there and horses and is a little disappointed when I say no.

I am trying to savor this moment simple but beautiful. My sweet boy calm and cuddled. I can't though because I am thinking about his cheekbones. They say steroids are going to make his face rounded and I am desperately trying to make sure I remember every detail of his face before it changes. I hate that the treatment is going to change how he looks. Right now he looks like a normal little boy and I don't know how long I have before that changes. Robbie has always been a little guy and it sort of breaks my heart to think he will be changed my the medicine to keep active longer. on top of that the weight gain will be hard on his muscles. i just don't want to forget what his cheekbones look like.

My heart breaks every time I hug him, or see his eyes light up about something, every time he laughs about something until his whole body is shaking. Its hard trying to hope and find comfort in scientific developments and trying to prepare yourself for the currently inevitable early death of your child. Yes I force myself to live in the present to only think a year to five years in advance but that doesn't really change the prognosis. there is no cure and no amount of positive thinking is going to change that.

You know when you have a baby and people especially people you don't know tell you to enjoy it. Most the time it's after you haven't slept for 3 days and the baby is crying and you smell like spit up. it's aggravating , right? Well for me I need to savor and enjoy every moment while dealing w/ the grief and reality of this disease. Some days I do okay and others the sadness fully engulfs me until I want to curl up in the fetal position and cry until I have no tears left. I can't though because i still have dinner, pull ups to change, homework to help with. I want to enjoy every second I have w/ him but that in its self is tragic. I don't want to do this because kids grow up too quick but because my baby may be gone before me.