Riding the Rollercoaster...and today it is up.

The ups and downs of this path we are on are undescribable. The patience required to stay sane in the midst of projections, prognosis, opinions, and diagnosis, is consuming. Then each day we start again, sometimes it feels like living in a snowglobe. All of the pieces finally settle, and someone goes and shakes it up again. Everyday is like that. Today we had some change, progress even. We still have no idea where this road is to take us, but for today our car has climbed to the top of a peak, and we are going to enjoy the view, lest we plummet for another valley on this coaster. Today he shows signs of withdrawing from pain stimuli, in addition to his already present reflexes. He also is opening his eyes more and seems to be looking at us. It was wonderful to see those green eyes today, seemingly upon my face as I read to him. I spent several hours this afternoon, alone by his side, holding hands and reading aloud. Before we could afford books on tape, whenever we went on a trip I would sit next to him on the seat and read aloud. It is comforting to go back to something familiar and enjoy the moment. He also is breathing on his own, 5 hours yesterday and over 10 hours today by the time I left to come home to the girls. This is good. This is progression. That is what I choose to focus on today. I had two conversations today, that helped me put me back in perspective. The first was with S who told me that my tone was different and he was concerned. He was right it had. I appreciated the visit today, and the kind words and help he has extended to me so consistently. It has kept me going. Really. I thought about his words to me today, and his quoting me my own words from this blog today. When I got home I got a call from another friend. A very trusted friend. Inquiring about me and my needs. I spoke of the rollercoaster, and he said a simple thing, but a very profound thing. He said " It is hard to pack for 5 different trips in one suitcase" I think that describes it exactly. That brought to mind my earlier conversation with S about the tone of my writing. They were both right. The truth is no one knows what is going to happen, and I have to choose each day what trip I am going to pack for. I am packing for Hawaii. If we get a thundershower I might have to run out for an umbrella, but I can do that. In the meantime, I am packing for Hawaii. The girls continue to be good. They are their father's daughters. I spent the morning at home with them, before heading to town. Their grandmother was here and stayed the afternoon with them, they needed her and she them. They help us all keep our eye focused. They are in the next room with MB reading silly bedtime stories and telling their own tales. Exactly where their father would want them to be. Leading us all. I am going to go now and claim my goodnight kisses.....