I have been remembering last summer a lot. Today, I was thinking about the time, right about now, when Katie could still walk, but did very little of it. Maribeth and Taylor had come over, and Katie and Tay were watching movies on the couch in our family room. Maribeth and I were drinking homemade, lavender-lemon-mint iced tea on the deck; it was a beautiful, warm day. At one point, Katie went upstairs to her room to bring down a few of her favorite pairs of shoes to show to MB & Tay. I especially remember the bronze flats that she loved, that Aunt Deb had bought for her.
After that, she would come downstairs once for the day, and go up when she was tired in the evening. One day, at this time, Alan surprised us and drove over to see Katie. He had bought Maribeth her "dream car" (a 1957 Chevy Bel-Air, I think) for her 50th birthday, so he wanted to ask Katie if she would like to go out for a ride. Katie came to the door and looked at the car, but declined to go out. It was a very sweet idea, though.
As she became weaker, she did not come downstairs at all. We rented a wheelchair, and hid it in the garage. We didn't know how she would feel about using it at home and for trips around town. It turned out that she didn't want to go anywhere by the time she needed it. We tried to organize a weekend cruise, but she was too weak to go by the time we could arrange it.
Day by day, her legs became weaker. And then the pain started to get stronger. She had to figure out the signs that her body gave, signaling that an attack of pain was coming. I think she had a tingling sensation, or some kind of premonition like that. Early on, she didn't know what the feeling meant. After a couple of episodes of awful, break-through pain, she made the connection, and would ask for an extra dose of pain medication at the onset of the feeling, before the pain got to be full-blown. That was when things were the smoothest. Learning to listen to your body is a pretty mature thing to do; having to learn to do it at age 12, in order to short-circuit a horrific pain episode, is very serious indeed. She mastered it. There were only two times that the pain veered out of control, and we were able to get it back under control with the medicines we had at home. I am so very thankful for that, and for her cooperation in the process. We worked together to give her the best possible care, and to be able to keep her at home, instead of going back to the hospital. She loved being in her own room, in her own bed, and she got to have that.
At one point, after her legs were paralysed, as Gregg and I were doing our best to move her gently and carefully, I recall asking her if she would like to have a professional nurse (trained, skilled) instead of us. She looked at me as if I were absolutely out of my mind, and said, "No." So I guess that our best was fine with her. It gave her the maximum amount of privacy and the least-invasive care, and no one could love her more than we do.