I feel deep pain for my child. As parents we are supposed to keep them safe and prevent them from harm. My little guy knows nothing else. He knows lab tests, procedures, medications and surgeries. That's what he knows. Life is so unfair. His biggest worry right now should be making a decision between what game on the Xbox he is going to play or who's birthday party he is going to. He shouldn't be worried about taking the goofy medicine (versed) and having yet another painful procedure done. Why? Why was my child chosen for this? I wish nothing more than to be able to take it all away from him. Give it to me. I will carry this burden. I don't want this for Dylan anymore. I want him to be NORMAL. I want him to be happy and healthy. I want him to grow and thrive. I just wish he didn't have this to deal with. When it comes to our family I tend to be the rock. I should say I try to be the rock. I hold it all together in the midst of chaos. It gets so hard sometimes, but then I look at Dylan and I see why I have to.
-Amber