Thursday, January 28, 2016


Since we now have switched my daughter Ellen to a nursing home, it means a new set of rules and new routes to take but the same hours spent. These are long hard hours when you sit in a room all day to comfort someone who does not understand what is happening. In a week’s time she has switched from one bed to another to still another, and Monday, another yet. Then she goes for pre-op and they will insert a rod in her leg so she can walk again.

On top of all this is the board of directors, which I preside over, and need to stay in touch with. Reading, going to meetings and being aggressive in doing the right things so the board’s trust in me is validated. I work as hard as I can for the board because they are the foundation of my daughter’s happiness, as are the staff that work there.

Then there is the issue of testing at another hospital for myself, with my carotid arteries, both, that are clogging up and if I don’t do something for them I will have a stroke and hopefully die.

So last evening, after spending the day with Ellen, I came home to 6 messages, all about Ellen and the needs of the various homes and institutions wanting to talk to me. One top of that I had to switch locations for the carotid scans and deal with the insurance company in arranging that, along with my cardiologist and the new hospital medical center where this will all come down. It is getting to be the one of the many dark periods I can recall all my life, but this time affecting me directly.

So what do I want? Just a little normalcy, something to settle my crazy world and give me a sense of comfort. I keep thinking of my little La Principessa and really wanting to see her again, but right now that won’t happen, so instead I’m doing little things to try to do that. For instance: making the bed in the morning, I take meticulous care to make it look perfect, perfect alignment, folds symmetrical to the bed and things like folding my gym clothes and getting back to that routine, which I miss.

I haven’t really done any cooking or drawing, because I have no time. All this because my child was born with three strikes against her and couldn’t handle her last walk. But you know, I will continue to do for her as much as I can, screw everything else.


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