He left for Denver today, a year ago.
I wish I had gone with him but he did not want me to go. I had worked tirelessly to get him this appointment and pissed off a few people in the process. His father would meet him in Denver. I had put so much hope that Dr Liu could save him. He had said he could. It was a horrible trip except maybe Liu did give him some extra time by changing him from one injection to a different one.
I cannot sleep but neither can I write this very long story which ends with his death. I just know that October everything changed and he rapidly declined.
The hospital was a nightmare. I fought with everyone. I wanted him to be healed; to have his transplant, to understand I was fighting for his very life, not to embarrass him. I questioned, I ranted, I complained and the doctors really did not like me, nor did my son like me. But I fought on. In my head I still fight knowing I might have gotten more done had I not fought the system so dramatically. I took to Twitter; doctors were angry. I was angry. Yet the story….and why.
I need to sleep. I went to bed at 10 and it is now 2. Just like it was a year ago. Freddie and I did not sleep the night before he left.