December 1, 1999
Well, the hospital finally called and today Timmi is beginning her hospitalization for the transplant. To those who requested it, a detailed description of our trip to Paris will be forthcoming within the next few days.
We do have a request - is there anyone out there who can drive Aimee and Danny to and/or from a Reiki* activity next Tuesday (December 7) in Mevaseret? They will need to be there at 9:30 A.M. and be picked up at 12:00 noon. This would be very helpful, as I will need to be at the hospital, Don may well need to be in Ashdod and we are trying our best to enable the other kids to have as normal a life as possible.
If you can take, pick up or both, please email me.
* Reiki: A kind of energy healing. See “Healing” (August 2004).
November 24, 2004
This morning, I woke up after a full night’s sleep, more or less. Don and I set about getting Aimee and Danny up and out to school, and at the same time I cooked a Thanksgiving sweet potato dish that we’ll serve the family on Shabbat. I drove Aimee to school, grateful as always for the chance to have some time alone with her to talk, or just to be together. I came home, said my morning prayers, and went to work. Work was as usual, except that we had a lovely Thanksgiving lunch in the middle of the work day (yes, many expatriate Americans do celebrate Thanksgiving, which is tomorrow). During the day, I spoke with Elaine, who is doing National Service with disadvantaged children in Jaffa and who let me know that she’ll be home for Shabbat. I also spoke with our oldest daughter Lisa, who said that she’ll come to Jerusalem with her partner the first night of Chanukah for our traditional family celebration. I left work in the afternoon and walked home, where I took care of some business and then took a two-hour nap. On Wednesdays, Don and Danny cook dinner together, so we sat down to eat quite soon after I got up. Aimee is sleeping at a friend’s house, so it was just the three of us. After writing this post, I’ll probably read or listen to music, or both, before going to sleep. As things come up, I’ll chat with Danny and with Don. Then it will be time for bed again.
Does this sound boring? Pampered and spoiled? Lazy? To me, a day like this is nothing short of miraculous.
Before Timmi’s symptoms first appeared, life was a very intense shade of normal. True, Don and I had seven children and two full-time jobs, but we spent our time doing pretty much what any family does – dealing with our children’s education and physical and psychological health, our workplaces, our overextended budget, and the other trappings of a middle-class life. We managed to find a tiny bit of time for ourselves, at least sometimes, and once or twice a year took the children for a few days’ vacation. Our family was certainly unusual for its size and, most probably, for our combination of religiosity and political and social liberalism, but well within the usual bounds, as families go.
From my perspective now, I can see that our lives started going crazy in the spring of 1994, when Timmi started experiencing pain that wouldn’t go away, and steadily worsened. We spent an increasing amount of time taking her to doctors who couldn’t find anything wrong, and to massage and shiatsu and a psychologist and who knows what-all in order to try and help her feel better. When she began having trouble walking, we had to make special arrangements whenever she needed to get somewhere. When school began in the fall, we organized volunteers to drive her there and back. By that time, we were spending most of our emotional energy worrying what was wrong – Why wasn’t she eating? What was this pain about, and why couldn’t she walk? – and a great deal of our time trying to get the problem diagnosed so we could take care of it. (If only we could really have taken care of it…)
We humans have an amazing capacity to adjust. Once Timmi was diagnosed and started treatment, even more of our time went into her care. But we got so used to the routine of hospital and home treatments, of chemotherapy and side effects and fevers, of crucial medical tests and waiting for life-or-death results, that it all started to seem normal. I would speak with friends about what was going on in my life, and sometimes couldn’t understand their reactions. Why didn’t other people think cancer jokes were funny, as we did in our family (including Timmi)? What was all the fuss? After all, in the hospital we knew lots of people who lived the way we did. It almost felt like, “Doesn’t everyone?” Doesn’t everyone sit with her daughter and calmly examine a CAT scan together, comparing the points on her skull to which her cancer has spread to the places that have been hurting for the last several weeks? To take a less horrifying example, don’t all families make up a schedule each week of who sleeps at the hospital on which days?
Except, of course, that no, not everyone does. The overwhelming majority of people do not live like that; our life was undoubtedly far from normal. The further I get from that time, the more I marvel at how we could just take such a crazy way of living as a given.
When Timmi was diagnosed, Aimee was four years old, and Danny was three. Our older daughters ranged in age from 16 to 9. While other children their age were going through the usual emotional and social turbulence of growing up, Danny's and Aimee's entire childhoods were spent in the shadow first of their sister’s illness, and then of her death, in having to compete for attention with a sister whose health had absolute priority. Our older daughters, too, were deprived of a normal adolescence and young adulthood. Timmi’s older sisters were thrown into the role of caretakers at an age when they should have been learning to take care of themselves apart from the family. All of the children saw things that no one their age should have to see, and felt things that no young person should have to feel. Some of them “accepted” the way things were without complaint and just tried their best to be helpful; others expressed their resentment, either actively or passively. Both ways of dealing with our insane life life carried a heavy emotional cost.
In the aftermath of Timmi’s death, there was no longer even the illusion of normality. I’ve already described my own near-breakdown after a few months.** Even though almost all of what energy I had went into giving my surviving children the support they needed, they still had a mother who wasn't functioning fully. Don was also overcome with grief. Survivor’s guilt attacked all the children, even those who had given of themselves to Timmi far beyond what one would expect or even believe possible of a person that age. Some of them became depressed, refusing to go out except for school and spending much of their time alone in their rooms. Some fought with their friends, who (like the adults) had no idea of how to speak with them or act with them. Some gained quite a bit of weight, others could barely eat.
Even after the family’s external life returned to an orderly routine, I couldn’t seem to achieve any kind of balance. Things I needed to do often seemed overwhelming. But whenever I had any free time, I would frantically search for things to do to fill it. (And for the last few years I’ve had much more free time than I ever did before; during the years of Timmi’s illness, my children did a lot of growing up.) When I no longer had a sick child to take care of, I couldn’t get used to the emptiness of the hours. Since my college days, I’ve dreamed of being able just to sit and read a book that wasn’t required for some course or for my work. Suddenly I had that option – but much of the time I felt guilty or lazy for taking advantage of it, even if the house was empty and dinner taken care of. I constantly worried that there was something else I should be doing. Don’t the children need taking care of? (For a very long time after their sister died they needed almost constant attention.) Shouldn’t I at least be improving my mind with fine literature? (For a long time I could only concentrate on easy-reading novels.)
Gradually over the last couple of years, I’ve begun to be able just to do the usual things that normal people do. I’m even developing the ability to be fully present when I do those things, rather than always thinking ahead to the next task, and worrying about the next assignment. In the past few weeks, I’ve finally started feeling that the rhythm of our family’s life has almost returned to normal, and that I am in synch with that rhythm. The children are now busy with their own lives – school and friends and after-school activities. Don has his own career and interests. And on a day like today, I can go to work and be fully engaged in what I do there. I can come home and take a nap, and feel good about doing something for myself. I can sit and read and feel that I’m not wasting time – I’m just spending it pleasantly. And I can be with whichever members of my family are at home or call us on the telephone, and just enjoy having them to be with.
Now, that is something to be truly thankful for.
** In “Routine,” August 2004.