27 September 2011

I’ve been reading Simon Beauvoir’s “A Very Easy Death,” about the last illness and death of her mother. It is a very slim volume and I expect to finish it tonight. It is more about the illness than the death, and although I was hoping for some pearls of wisdom from the great writer, there is between this mother and daughter some fine compassion and early love that I cannot relate to. And it is about a dying, long enough for children to linger at a bedside.

“I had grown very fond of this dying woman. As we talked in the half-darkness I assuaged an old unhappiness; I was renewing the dialogue that had been broken off during my adolescence, and that our differences and our likenesses had never allowed us to take up again. And the early tenderness that I had thought dead for ever came to life again, since it had become possibly for it to slip into simple words and actions.”

Pretty lovely. I had wished for the same from my own mother. I thought I made the attempt but she would have none of it. Early tendernesses were not for grown children, if they had been there for little ones. Others have said to me, ‘she was very proud of you.’ and ‘she was proud of Cheshire.’ I don’t think it was pride that I was looking for.

I did not know a dying David. Well, I did, but didn’t know it. To me, to us, there were things to go through, set backs to overcome, but before his heart gave our that morning, there was no dying. Oh, we were optimists.

Julia is a bundle of contradictions. Lately, I have been obsessed with her body -- the healing of it. I have cleaned and salved and bandaged different parts of her body day and night in the hope that picked scabs with little bruises beneath them will be healed. Her arms are still pretty bad. I’ve gone through three boxes of bandaids in a week. I worked on her legs first and now that they are almost always covered, they are looking better. Makes me think I should have concentrated on her arms first, but those legs! Oy. It hurt to look at them.

She can still be so difficult for her therapists. They need to remind, prod, suggest, and bribe her to do as they wish. I listen from my second floor perch and lose all hope of good behavior and maturity. I thumb back to September 2009, before the transplant, before death, before healing, and I am eerily in such a similar place to where I am now. Have I lost so much ground? It is all a path, I know there are no guarantees about progress, and I am sure we lost ground last year, but still . . . oh, I don’t know. I do want progress and I want to look back and feel enlightened and further along the road. It is just not time for that. Yet. I hope yet.

I read about Julia bringing home papers with addition problems in second grade. Actually, I don’t remember any of this. I think most of second grade has been blocked from my mind -- the school year of waiting for a heart. Was she doing addition? She cannot do it now. She does not understand the concept. She is getting closer, but by inches, millimeters. For math, we are still working on number understanding. When she was in second grade, I was working at home on reading and word recognition. I left math to school. It would be another year before I realized that she did not understand counting, or more or less, or bigger or smaller. We work at more and less. Now. Still. She understands a careful process that I’ve (with Cheshire’s help) put together, but ask her if she wants 2 or 5 reward points for some good behavior and she is just as likely to say 2 as 5. She will change her answer if she says 2, but she is reading my reaction, she cannot figure out which is more without engaging in our careful process.

I don’t know whether I am making her sound more disabled that I used to? Did I believe her to be further along, not understand the full scope of her inability to grasp basic ideas? I hear her ask her therapist, “What are your years?” instead of “How old are you?” It is good that she is asking -- showing some reciprocity, but her question language skills are weak. She engages in conversation starters more frequently, and she is getting better about giving some background to her comments, e.g. “In the movie, Tangled. . . . “ instead of just beginning to talk about Maximus the horse. But it is hard to trade comments more than three times with her. There are no in depth conversations. I try, actually her therapists are also trying, it converse with her using statement more than questions. Not all conversations are question and answer, but this is hard. A comment does not necessarily elicit a response, at least from Julia. Of course, we did start from a pretty primitive place -- she never answered questions.

She asked to play UNO today. This game used to be so hard for her and I really thought we would never get to play it. These were the cards that we carried to China, ready to teach our five and a half year old to play. Games using numbers can be great first games for kids without English, but who have been to school and understand numbers even in a very basic sense. There are lots of stories of kids learning quickly, amazing their new parents, and playing on the plane all the way home. Five years after we made that journey, Julia wants to play UNO. Needless to say, we did not play UNO in China. Stacking cups were a challenge. I am grateful for the progress but it has been a long time.

Julia’s teacher wrote me that Julia spelled all her words correctly on a spelling test last Friday. She has a new list this week, and we are working. She appears to understand the reason that we practice and learn these words, and in truth it doesn’t seem very hard for her to learn them. All very easy words, with the theme of some sound -- -or words this week -- and at times she seems to be sounding them out as she spells.

No comments: