I have no idea which day of the week it is. We just keep plugging along from minute to minute. This morning we had a visitor come by and I said to Philip say hello to her. He then verbalized his hello to her succinctly. We were amazed. We were singing songs that we knew he liked, and he was trying to keep time with his shoulders. It is so ironic that Philip’s journey through sickness began with his brain, and yet that is the part of his body that needs no support and keeps going. We are doing our best to keep his room a happy place.
The entire staff has our utmost respect and appreciation. They have used everything they have had at their finger tips to help Philip. His successes have brought smiles to their faces and his defeats have sent them searching for more options The conversations they have had to have with us were not easy. They were straight forward and yet gentle. Every nurse that has come into this room has been well educated and kind-hearted. Their support for us as well as their sensitivity to Philip’s needs goes above and beyond.
The future is not in our hands nor in staff hands. If it were we could write the outcome, but we can’t.