I will give a little head's up on this blog post. I will proabably come across as negative and maybe a little angry. Anger always seems to be my go-to emotion. I think it keeps me from fully coming apart at the seams. And maybe I am a little angry. But I think I am mostly just sad. That deep sadness that takes over every corner of your being. And worried. And scared. And losing that last little bit of hope that anything will ever change. Stupid me to think that transplant would make things better! I should have known better. For nothing ever seems to get better. It is just one thing after another after another. I am breaking it seems, and maybe I am. But I don't know how much more of watching him be miserable I can take. Or how much more worrying, wondering what I should do, if there is anything I should be doing better. AAAAHHHHHHH!
Ok, I feel slightly better after my little rant. Those are the thoughts I can't seem to shake out of my head. And I don't dare share them with him. He gets every little last piece of postive I have to give. But he is sleeping right now. And I am sitting in the living room venting to a computer screen and to someone that hopefully understands just a little bit. Maybe has some suggestions or advice. Or anything to share really, that will bring just a little light back into my reality. Because the normal, we will get through this stuff too - it will get better, thoughts I try to tell myself are not working.
We came home from the hospital yesterday. July 13th, 2012. Kinda funny I guess, because one month ago, June 13th (our 5 year anniversary) we came home from the hospital too. Except that time we were returning from a transplant surgery. Full of wonder and hopes and encouragement for the future. Ha.
Since then he has had not a single bit of energy. I mean none. Gets winded walking from living room to bedroom. Then last Saturday the vomiting started. Off to the hospital we went. Fast forward a week and we are home. No vomiting - and no energy.
I guess I just need some advice from those of you out there that have been through it. Does it get better? when? Advice? Anything? At this point, I will even take "STOP WHINING!" anything. :)