October 8, 1999
Timmi was released from the hospital on Sunday, although she got to sleep at home both Shabbat and Motzei Shabbat. She felt rather weak this week, although her mood was quite good, and made it to school for some of her classes. Since her blood counts have probably returned to normal by now, she will go to the hospital Sunday morning and if her counts are indeed high enough, she will be hospitalized for the next course of chemo - again five days in the hospital. We had hoped to be able to go together to Paris for a week between the last and next courses, but the doctor didn't want to wait a week before starting, as that could give the cancer a chance to start growing back. She was very disappointed, but of course understands what's more important here.
After this course will probably come another infection with about a week's hospitalization, probably beginning about a week after the chemo ends (in other words, chances are that at the end of next week she will get a fever and have to go in again, like she did on Succot). After she recovers she will get PET-scanned again and if all is well it looks like she will go in for the transplant in mid-November. That hospitalization will be for at least a month, in isolation.
Shabbat Shalom to all of you.
October 12, 2004
For the first time in ten years, I have a really serious long-term plan. In November 1994, Timmi was diagnosed with cancer after six months of becoming increasingly sicker. From the moment she entered the hospital for tests, until the last couple of months or so, I found it hard (in varying degrees) to impossible to know what I’d be doing in the future, both for the short and for the long term. But to my surprise, I now find myself in the middle of planning a serious change in my life. I'm almost afraid to believe things will really go as I’m hoping they will, but amazed at the fact that I'm willing to take the chance they won't.
One of the most bizarre aspects of having a child with cancer is what it does to your ability to plan – actually, to the very concept of planning. On the one hand, most kinds of planning become impossible. When Timmi was in chemotherapy, my ability to plan for the short term was shot; I could just about never commit myself to be in a specific place at a specific time (except for the hospital visits – and even then Timmi’s condition sometimes prevented us from getting there on time). But while it seemed I'd never be able to plan seemingly simple things like cooking, shopping or getting to a parent-teacher meeting on a particular day, I did know more or less when Timmi was going to develop a fever. Who ever heard of planned infections?!?
Medium- and long-term, of course, we couldn’t know whether her treatment would be effective, and some treatments were potentially dangerous. There was also always the chance that a “planned” infection would get out of hand. When Timmi was in remission, of course, we did manage to work, to go to synagogue on Shabbat, even to take several family vacations. But even then, the threat of a relapse was always hanging over us, whether consciously or not. It’s hard for me to say it in so many words, but there it is – we could never be sure whether the next day, week or month we would have seven children or six.
For the first two years or so after Timmi died, I found myself even less able to plan my life than I had been when she was sick. With the routine of taking care of her gone, I had ample time to do what I needed or wanted to do – too much time, in fact. But there was never a way for me to know whether I would be in any kind of shape to act. I couldn't even know what I wanted to do, let alone decide to do it and make the necessary preparations. After such a shock, who wants to do anything, who can think things through and then do them?
Even after my own emotional state improved and I began to believe in my own strength, my life remained unpredictable because of my children’s struggle with their sister’s death. One became clinically depressed for several months; another began acting out in school and at home. The others expressed trauma and sadness in other, individual ways. We could never know when a crisis would break.
Amazingly, though, my trust in a fairly predictable future has returned. It seems that no matter how often life presents us with - throws at us, really - the totally unexpected, we can't really live our lives without that basic faith. We wouldn't survive emotionally - or physically, for that matter - if we were to see the world as being all the time the way we know it sometimes is, as always going its own way without our being able to affect its course.
Today, I work at an actual job with regular, if part-time, hours. My children can count on me to do the things for them that mothers do for their children. Therapy has also helped some of the children through their crises, and I don’t need to be available every minute of the day to deal with situations that are threatening to become catastrophic.
And so I’ve decided to take the plunge and plan something really big. For some time I’ve wanted to retrain as a mental health professional, in order to help parents and siblings who are going through the trauma of having a chronically or dangerously ill child in the family. To realize this dream, I’m applying to a Masters program in social work – a course of study that will take me quite far from my original profession as a lawyer. For three summers, I’ll travel to New York for academic courses, and during the two years in between I’ll do a field internship here in Israel. Don will take care of the children, the youngest of whom will then be 14 years old.
It’s a wonderful feeling to know that my children are strong enough now that I can make a plan like this. And now that I no longer take a predictable future for granted, I’m amazed at the very fact that I’m once again not only able to hope for concrete things, but also able to believe that my hopes have a reasonable chance of being fulfilled.