Trying to Stay Strong

I am sitting here wondering how much longer I can last like this. It has been a long six years. When we knew something was wrong with Dylan I convinced myself that after his first surgery that he would be fine. It didn't take long for me to come to the conclusion that it was not the case. I spent the next five years waiting for Dylan's "fix". The dreaded T word. It seemed so scary for so long. After Dylan's GI bleed nearly a year ago I was ready for it to be over so my little guy could be healthy. So he could start being normal. I knew the real facts. I knew about trading one set of problems for another. I knew, but I also hoped and prayed that Dylan would be the exception. Some how some way he would beats all odds and we would never look back. I was so naive. Here I thought that transplant would be Dylan's fix. That he would be better after this. Transplant had to be the worst of it. Its not.

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