Day 83
John's most recent blood test was Wednesday and his white count remained at .4 (or 400), but some of his other counts did improve. Given his lack of immunity and the current flu season, he's stayed quite isolated. Debbie and I carry a bottle of Purel and are as compulsive about using it on our hands as Monk is on the TV show. I wipe down the kitchen and bath three times a day, because I don't want John to end up back in the hospital again. Technically, though he should still be there, given his blood counts.
Debbie is headed to visit her parents this weekend for her mother's 75th birthday. I had to drop out because John needs someone around.
I heard an interview of an author of a new book on the working poor the other day. He said they could not afford the "luxury of rage." Something resonated from that phrase, and I mentioned it to a friend who also has a child with long-term, major problems. He translated the thought to me by saying we couldn't afford the "luxury of just falling apart" over helping a child face all this. The thought probably doesn't make as much sense to anyone who hasn't faced such things, but it did to me.
Debbie, whose balance is as level as the sea and as predictable as the tides, is working hard to cope with all this too. You just want to be able to "do something" about it and there isn't much that can be done that we aren't doing. Patience, care, good food and encouragement is about it most of the time.
Fortunately, John hasn't succumbed to the luxury of rage, though he, most of all, has the right to that sense. He does what he needs to each day and copes pretty well that way, I think. He goes back for a blood check again today.
Debbie is headed to visit her parents this weekend for her mother's 75th birthday. I had to drop out because John needs someone around.
I heard an interview of an author of a new book on the working poor the other day. He said they could not afford the "luxury of rage." Something resonated from that phrase, and I mentioned it to a friend who also has a child with long-term, major problems. He translated the thought to me by saying we couldn't afford the "luxury of just falling apart" over helping a child face all this. The thought probably doesn't make as much sense to anyone who hasn't faced such things, but it did to me.
Debbie, whose balance is as level as the sea and as predictable as the tides, is working hard to cope with all this too. You just want to be able to "do something" about it and there isn't much that can be done that we aren't doing. Patience, care, good food and encouragement is about it most of the time.
Fortunately, John hasn't succumbed to the luxury of rage, though he, most of all, has the right to that sense. He does what he needs to each day and copes pretty well that way, I think. He goes back for a blood check again today.
