Hi. So our first full day trying to absorb the reality while also trying to enjoy every second, even if it is just watching him sleep. He did sleep most of the day today. He was put on a fentanyl drip. It took most of the day but I think we are getting close to knowing what the dosage should be. Of course, I guess as he gets used to it we will have to increase the amount. You can tell when he needs more or the base line rate is not enough because he is restless and will moan a lot. His pain is pretty severe. His stomach is bloated which causes his rib pain and then there is just the all over achy pain. We will continue to monitor and make changes as his needs increase. He was awake this evening a bit. When I say awake I mean he answered yes or no questions and asked for a drink. I want him to rest but I want to hear his little voice too. I am ok as long as I don't think too deeply about how bare and stark and gray life is going to be with him not there. I really feel like maybe all will be ok, maybe he just has a bug and will get better soon. Of course then the hard, completely incomprehensible reality hits and the wind is knocked out of me. I tried to look at some recent pics of him, ones from just a week ago..I can't do it. I can't explain the feeling when I see how well he looked and how he was smiling and then put it together with the fact that soon he will be gone and I will never see him again. I cannot process it. So I am not going to. I am going to keep doing what I do, what I have done forever, take care of Jed. He is here, with me, right now and that is where I need to be, right here, right now, with him. I know every parent loves their child but by 12 they are doing their own thing and you are not together as much as you were when they were babies. Jed and I have have never really been apart on a consistent, regular, daily basis. Will he be ok without me? who will take care of him? Will he be scared? Will he be as devastated as I am? Just the thought of him needing me and I'm not there is enough to make it hard for me to breath. I guess I have to go with the idea that he will be safe and happy and healthy. I want Renee to come get him when he is ready. My best friend can then take care of him for me. I wish I had that deep unquestionable faith that others have, but I don't.
I still don't' understand how we got to this place, it was not supposed to end like this. This is all wrong, just very wrong. I swear the reality of it is just so stark and bleak and incredibly horrifying that I think this is not really true. Please, it cannot be true.
Jed is lying here next to me snoring away under his oxygen mask. And so I am going to go back to what I do, back to what is familiar. Taking care of Jed, watching counts, waiting for white cells, and planning when we will go home. Only this time I never want to go home, this cannot end, it just can't
Love to you
J & K