Thursday, November 25, 2004

A Normal Life

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.

Thanks, S.

* 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.

Thursday, November 18, 2004

Blogger's Block

November 8, 1999
Timmi’s transplant is presently planned for about the end of November, and we are trying now to plan activities that can keep her busy in the hospital, to the extent that she feels well enough for activity. In that context, if there is anyone out there who has or knows of someone who has a laptop computer to lend Timmi to use in the hospital, we would be very grateful indeed. It would be preferable for the laptop to have Internet capability, but this is not absolutely necessary. If such a machine exists out there and is available for Timmi, please let me know by email.

Thanks very much – S.

November 18, 2004
Earlier this week, I went to the hospital to visit a friend and colleague of mine who had just had a baby. This kind of visit is the best possible reason to come to a hospital. When I first walked into the ward, I felt a little lift. The rooms and corridors were filled with mothers, babies and their admiring visitors, and with a kind of festive atmosphere that can't be found elsewhere in the building. It was encouraging to be surrounded by so much new life!

The visit went very well, with my friend looking happy and energetic and her sweet baby girl sleeping peacefully. At some point, though, I became aware of a certain gnawing feeling in my stomach, which grew as time passed during the visit. At first, I put it down to tiredness (I’ve not been sleeping well recently, again) and general nervousness about the work I needed to finish when I got back to the office. Then, I thought that perhaps I was feeling claustrophobic due to the crowded conditions on the ward – three beds to a rather small room, separated by curtains so that it feels as if each bed is in a narrow booth. But finally it struck me that the room reminded me far too vividly of the many hospital rooms in which Timmi passed so much of her time during the six-plus years of her illness. And I also realized that ten years ago – almost to the day – Timmi was first confined for tests at this very same hospital.

Since that visit to see my friend and her baby, I’ve sat here at my computer every day, sometimes twice a day, and tried to write about Timmi’s and our family’s experiences in the hospital. Timmi spent at least eight months altogether living in the pediatric cancer ward, and weeks at a time spending the whole day in the hospital before returning home to sleep. She and other members of the family spent so much time there that the hospital became, in a sense, a parallel universe for us, a kind of alternative reality. And there’s much to tell about that “other life.” There’s the way time became distorted after a few hours, and even more so after a few days. There’s the way Timmi’s life shrank to the proportions of a bed, a chair and a small hospital chest-table – all squeezed between curtains on each side and, when she wanted privacy, at the foot of the bed. There are all the strangers with whom we were suddenly involved – doctors, nurses, social workers, volunteers, you name it. I could go on and on.

Or, I should theoretically be able to go on and on. I want very much to use my mind and my language to grasp and describe the overall picture, to find some kind of meaning in our experience of living for such long periods suspended between two worlds – the “normal” one and its hospital alternate. But I find myself unable to think about anything except disconnected incidents here and there. I can’t seem to make sense of the experience as a whole. When I sit down to write, a kind of fog creeps over my mind and the words refuse to come. Why? Is it possible that the hospital became such a way of life for us that there’s nothing remarkable to write about it? But that can’t be right. Life was so different “inside” than it is “outside,” and I know for sure that there are many, many facets of that experience to describe, and even more stories to tell.

No, what’s really happening is that my mind is fogging over as a way of refusing to go back there.

I know this fog intimately; it’s where I spent most of my time in the months following Timmi’s death. It comes together with a feeling of fatigue, with that gnawing in my stomach, and with a physical uneasiness that I find hard to describe, other than to say that it feels as though I’m filled with something that desperately wants to escape. I suppose that something is the part of me that still hopes that one day I'll wake up and realize that it was all just a bad dream – that Timmi never got sick, never spent all those years undergoing painful, traumatic and exhausting treatments, and never died. I don’t want to have these memories. I just want to have her back with me.

I need to cry right now, but I can’t. In the same way that my memory has fogged over, my tear ducts seem to have frozen. It’s too painful to sit and remember, and it’s too scary to start crying – the tears might just go on forever.

So I guess I’ll have to write the stories, and the descriptions, and my five-years-later analysis of the hospital and what it was for us, bit by bit as things come up in other contexts. I guess I still have a long way to go before I’ll be able to look at my memories of all that time in the hospital as a whole, integrate them into my present life, and make some kind of sense of it all. More likely – or at least that’s the way it feels now – I won’t ever be able to do that. I don't think that human language can make those experiences into a consistent narrative, and I believe the human mind can't grasp their essential meaning – because they really do not make sense.

Thursday, November 11, 2004


November 7, 1999
Sorry it's been a while since the last update. Last week was rather rough, and it was hard to put our finger on what was going on. Timmi's emotional state started deteriorating again, to the point where we had to consider canceling our trip to Paris. In the end she was hospitalized overnight Thursday-Friday for dehydration, which may have been negatively affecting her mood, and the dose of one of her medications was changed. She started feeling better in the hospital, and had a reasonable Shabbat, but we decided to defer the trip to next week (Wednesday), and shorten it to one week, as she needs to see the doctor this week for follow-up concerning the new dose of her medicine. If things stabilize over the next week, we will be able to go after all. Other than that, she will be doing various scans and other examinations before we go, in preparation for the transplant, which we still expect to take place at the end of November.

Shavua Tov to all of you.

Love, S.

November 11, 2004
When I look back at the life I was leading five years ago, I can hardly believe that a few weeks ago, I re-joined the choir with which I had sung until 13+ years ago, when my son Danny was born. While Timmi was ill, I spent virtually all my time trying to care for her and to give my other children desperately needed attention. After her death, I wasn’t able to commit myself to any kind of regular activity outside of work. I couldn’t even have imagined singing with a choir. Now, I feel that a very important part of me is reawakening.

One of the hardest losses for me after Timmi died was my ability to do, and to enjoy doing, the things I’d always loved. And making music – especially in harmony with others – has always been one of the things I’ve loved most. When I make music together with other people, each of us is part of an integral and (when all goes as it should) beautiful whole. When I make music, everything outside falls away, and all that exists for me is that one moment and the need to make it the most beautiful moment I can. When I make music, I take a sensual pleasure both in using my own body to generate beauty and in hearing the beauty that I’ve created, whether alone or together with other singers or musicians. When I sing, especially, I’m connected to my deepest emotions, even those that I normally avoid or push back when they try to assert themselves.

Timmi was musically gifted. From a very young age, she loved to sing and to dance, and to listen to all types of music, from classical music to spirituals to rock’n’roll. Singing was one of the ways she had of expressing her sometimes sunny, sometimes stormy, but always powerful feelings. She had a very deep appreciation for beauty, and was fascinated with all forms of art, whether experienced through the eyes or through the ears. (In the near future I’ll post the update describing the trip to Paris that almost didn’t happen, and you’ll see what I mean.)

Timmi and I loved to sing together. During our drives to the hospital, we’d often sing American folk songs I had taught her, songs like “Where Have All the Flowers Gone?” and “If I Had a Hammer.” She often made up funny Hebrew translations of these songs, but we mostly sang them in English. There were times when we even sang together at the hospital. Once, she taught the mother of another patient – and me, for that matter – the tune to a rather difficult Hebrew song (for you Israelis out there, it was Leah Goldberg’s “Slichot” as sung by Yehudit Ravitz). Singing took us, for a few moments at least, out of the children’s cancer ward and into a world of beauty and harmony. It took Timmi’s suffering body into the world of the soul.

When I come to think about it, one of the reasons Timmi liked coming to our synagogue, when she came, was our community’s spirited singing during Shabbat and holiday services. She also participated many times in women’s Torah readings, which gave her the opportunity to sing for other people. I think that for her, as for me, singing was an act of the spirit that was rooted in the world of the senses – a place where body and soul move in rhythm and together create something pleasing both to the ear and to the heart.

As Timmi approached the end of her life, she became increasingly unable to listen to music, which could no longer distract her. I see now that this was a sign that she was slowly separating from this world. Sensual pleasures could no longer hold her here; she was moving into a different dimension.

During her very last weeks, when she was lying, completely sedated, in the intensive care unit, I came every day to speak to her – and to sing to her. I sang her the lullabies that had put her to sleep when she was little, I sang her the funny Israeli children’s songs we’d learned together from records, I sang her the folk songs we’d shared, and I sang her the pop songs she’d sung with her sisters and her friends. She was too deeply unconscious to respond with her body, but I can’t believe she didn’t hear me in the deepest part of her being. I won’t believe that.

For a long time after Timmi died, I didn’t seem to be able to find the energy to sing more than occasionally. I even found it hard to join in the singing at synagogue on Shabbat, which had always been one of the high points of my week. I think now that this is because something in me was afraid that to sing would mean to open up the well of my deepest emotions, which I was doing an excellent job of blocking.

As time has passed, and I’ve slowly allowed myself to feel deeply again, I’ve found myself singing more and more. My daughter Aimee and I enjoy singing in harmony, as I did with Timmi. Music has also become a medium through which I can sometimes sense Timmi’s presence. To this day, I often feel that she’s singing together with me (or even through me) during Shabbat and holiday services. When I need to spend some time thinking about her, I often sing the haunting song she taught that other mother and me in the hospital. All the songs she loved to sing have, for me, become imbued with her spirit.

I’m very grateful to be in a place now where singing with a choir doesn’t seem like an impossible demand to make on my physical and emotional resources. If anything, singing now energizes me. And when, either alone or with the others in my choir, I sing Psalms or Biblical verses in Hebrew or in English or in Latin, I can sometimes sense that somewhere, in that other dimension, Timmi is singing along.

Thursday, November 04, 2004


November 3, 2004
This Shabbat, Jews will read the weekly Torah portion called “Life of Sarah,” which opens by recounting our first matriarch’s death. The end of Sarah’s life story is told almost immediately after the story of Abraham’s near-sacrifice of their son Isaac. Talmudic legend has it that the Evil One came to Sarah and told her what her own husband had done to her only son – and she died on the spot. I think I understand now, in a deeper way than I ever did before, why this happened. Sarah felt not only the pain of losing (or almost losing) a son, but also of knowing that she was, and would remain, alone in her pain. Without support, she couldn’t go on living with such overwhelming sorrow.

After Timmi died, I also felt sometimes as if it would be impossible to go on. The prospect of spending the remaining decades of my life as a bereaved parent filled me with despair. I am more fortunate than our matriarch Sarah in that Don and I are very much together in our loss, and have many times been able to help each other through very hard times. But sometimes it’s hard for us to manage alone to pull each other out of our darkest places. At those times, I feel very strongly the lack of a community of people who can find me where I am and help me out of my despair. Although I love and am very attached to my religious community, I’m “here,” and they are “there” and can’t truly understand me. (And I hope, please God, that none of them will ever be in a position to truly understand me.)

I tried to deal with this loneliness by joining a support group for parents of children who died of cancer. My experience there only succeeded in making me feel even lonelier, but I’m now at a point where I think I’m ready to try again.

I took some convincing to join the group. After Timmi’s illness came back, Don and I tried a group for parents of children with cancer. Don felt immediately that the group would have nothing to offer him, so he didn’t continue with it. I tried, but stopped attending after only a few sessions. All the other parents there had children who were sick for the first time. What they needed was to strengthen each other in the hope that their children would survive; what I needed was to process the fact that my child probably wouldn’t. They didn’t need a constant reminder of their worst nightmare, and I didn’t need to hear about the high cure rates for childhood cancer (we had been told, at one point, that Timmi had a 90 percent chance of living).

So when the same organization called about two years after Timmi died and invited me to join the new group, I was hesitant. At that point, I was already processing my loss in therapy, and the other parents had lost their children much more recently than I had. I was afraid our differences would outweigh what we had in common. The father who phoned me, though, was sure that my experience could help the more freshly bereaved parents, and I did feel a need to share my feelings with other parents and listen to their own stories and feelings. So I agreed.

There were four couples there, and one other woman who had come to the group without her husband. At the first meeting, as each story was told, I felt a bond forming with the other parents. Here were people who knew the pain of losing a child. Surely they would be able to really hear mine? I felt a stirring of hope. Perhaps we’d all be able to help each other.

There were times I did find relief in sharing experiences and feelings with the other parents. I found that, like me, many of them had not had a full night’s unbroken sleep since their children had died. All of us shared our frustration with the never-ending “advice” we got – to take our children abroad, to try alternative therapies here, to go to rabbis to ask for their prayers... One of the couples recounted how they had stood on line forever waiting for a blessing from one of these “holy men,” and ended up feeling like merchandise on a conveyor belt. Another time, we talked about whether it comforted us knowing that our children were now in a better place. A mother who had lost her four-year-old expressed her worry and guilt that her daughter was in this other place without a mother to take care of her. A father told us how he saw and spoke with with his son every day, and many of us (including me) expressed our envy and wish that we could see our children even in our dreams.

But those moments of being truly together were few and far between. Most of the time we pulled in different directions, because we had very different needs. “Miriam,” the other lone mother in the group, wanted desperately to know Why. How could something so terrible have happened to her innocent son? The answers she got didn’t speak to her at all. The “we can’t understand the will of God” response didn’t work for her (and doesn’t work for me) because it still leaves open the questions why God would will such a thing, and why He gave us the power of reasoning if He doesn’t want us to understand. And if her son was really in a better place, why didn't he send her some sign? Didn’t he want her to know that he was where he should be, that he still loved her? I was deeply moved by Miriam’s scream of “Why?”, and hoped the group would explore it with her. But some of the group’s men shied away, and whenever she tried to express the full force of her pain, they changed the topic after the first few sentences. She started coming less and less often.

Like Miriam, I wanted very much for all of us to share our feelings and thoughts about the hardest places we’d been. That was why I had joined, after all. But the men who kept silencing Miriam (there were two who dominated the discussions) apparently didn't want this, because they spent a huge amount of time talking about things like the exact details of the chemotherapy their children had received (how many courses? how long? which medications?). When we started getting close – or threatened to get close – to emotional issues, they would sidetrack the discussion.

Once, when I started to tell of the role that Reiki (a kind of healing through touch) had played in Timmi’s experience, “Aaron” started arguing with me vociferously about the difference (according to his definition) between Reiki and “healing.” I never got to finish what I wanted to share. Another time, when we began to touch on the place of our Jewish faith in dealing with such a terrible loss (a very complex subject, for me at least), the rabbi in the group started lecturing and pontificating. When I tried to explain that I didn’t agree with his opinion, I was cut short – and told (in almost so many words) that as a religious person, I should relate to this rabbi’s pronouncements as if God had given them to Moses on Mount Sinai. Politics was another sticking point – I was alone in the group in my convictions, while every one else there had thought we all had the same attitude, for example, to the Israeli-Arab conflict. But I didn't want to argue theology or politics . I wanted to connect emotionally. Wasn't that what we all really had in common?

I found myself taking Miriam’s role whenever she was absent, expressing (as she had before me) my impatience with the seemingly endless discussions of what were, to me, trivialities. I was already a troublemaker because I had questioned the rabbi’s interpretation of Judaism. Now I was making even more trouble by trying to keep the discussion from veering onto technical subjects and arguments about details. Paradoxically, as time went on and we got to know each other better, the group increasingly avoided sensitive topics. I grew increasingly frustrated. Then, one evening, Miriam tried to talk about the problems she and her husband had been having ever since their son’s death. Aaron and the rabbi told her in no uncertain terms that the group was not the place to bring up such subjects. She never came again.

Things went from bad to worse. I kept trying to get the others to open up, but that only happened in one-to-one conversations with the other women. In group discussions, Aaron would often interrupt me, with his extremely loud voice, in the middle of a sentence. I started speaking less and less. To their credit, the group’s two other fathers noticed this and sometimes invited me to speak. But my warm feelings at these invitations were tempered by my resentment at having to be invited – and only by a man – in order to express myself. Still, I kept hoping that things would change over time, and so I stayed with the group.

At our last weekly meeting, I tried once more. ( I still don’t know why, as this was officially the end of the “course.”) We were asked to share what the group had meant to each of us. But almost right away, the discussion was sidetracked by an argument between Aaron and the rabbi concerning exactly how many days Israeli law permits a parent to take off from work to care for a child with cancer. The argument went on and on and finally I said, as politely as I could, “But that doesn’t matter any more now, does it?”

Aaron exploded. He stormed out, saying he couldn’t sit in the same room with me, that I was always shutting people up, and that everyone enjoyed the group only when I wasn't there. He used very abusive language, and turned his voice up to full volume. I started crying. When he left, with the facilitator close behind him, I looked at the rest of the group, hoping for at least some understanding. I found none. I tried between my sobs to explain why I found it so hard to spend the group's time talking about National Insurance benefits. Not a single person responded except for Aaron’s wife, who echoed her husband’s words, if not his tone. At that moment, it became clear to me that they believed that I was to blame for the tension. When I realized that, I ran – crying even harder – out of the room.

I stayed out while the group resumed business as normal. I heard talking and laughter as they passed around the coffee and cake. No one entered the kitchen, where I was sitting and crying, until the facilitator came in and invited me come back to “resolve” things. It was incredibly hard for me to go back in, but I did. My heart was pounding, and the tears continued to pour from my eyes. What Aaron said to me was that he regretted the tone had had taken, although he stood by the content of everything he had said. The others looked at me expectantly. “Do you forgive him?” asked one mother. In the group’s eyes, I was the one who had brought trouble to Paradise, and so it was up to me to fix it so that things could once again be smooth and calm. I managed to choke out, “I heard you,” and everyone breathed a sigh of relief. I may still have been crying, but no one needed to worry about that, because harmony had been restored.

My experience with this group caused me intense and lasting pain. I had opened myself up, made myself vulnerable, and was then deeply hurt by people from whom I least expected it. I spent many months afterward back in the emotional fog that had followed Timmi’s death, barely allowing myself to feel strongly about anything. I felt cut off from other people even when surrounded by friends. My only relationships that felt true were with Don and our children.

Slowly, though, thanks to my family's love and my therapist's skills, I was able to make my way back from that desolate place, and started again to experience both real sadness and happiness.

When I look back at what happened in the group, I no longer feel angry. I understand that I was at a point in processing my loss where I needed to explore my feelings together with other parents. But many of the others were still in a place where they couldn’t bear exploring the emotional landscape of their own loss. Our needs were bound to conflict.

I can also see now that some of my attempts to offer support were interpreted by the men as criticism. For example, Aaron once told the group that he believed his son had died because God was punishing him for not taking good enough care of him. I asked him whether he thought the same could be said for all of us, and he said no. When I tried to say that I didn’t think God would single him out in such a way, he got very agitated. What I meant as a kindness – trying to get him to be as easy on himself as he was on others – he took as a challenge. As a matter of fact, I’m sure now that he (and perhaps at least some of the others) saw my trying to change the course of many conversations as a kind of power struggle, rather than as my way of expressing my own needs.

It may be that I would have had a much better experience in a group for women only, because men and women communicate so differently. The men in the group needed take the time to work out the details of the story of their children’s illness and death before they could approach its emotional fallout. The women knew their husbands needed this, and so they listened patiently while the men talked and argued about those details. Alone, the women would probably have expressed and shared their feelings sooner and more directly had we been alone, without any husbands.

How can I stay angry with these parents for what happened? All of them had very recently lost children. In moments of extreme sorrow and despair, we're all sometimes blinded to the feelings of others, even others who are going through the same sorrow and the same despair. We all need to process loss in our own way. Sometimes we need to immerse ourselves in our feelings, and sometimes we need to distance ourselves. These times aren’t – can’t be, really – the same for everyone, and so there will inevitably be periods when we’re out of synch with each other. There’s nothing to be done but to recognize when it’s happening, close our eyes and breathe deeply, and try to wait until we’re once again moving in the same rhythm.

Now that I understand these things, I think it’s time for me to try again to share my loss with other people, and to share in theirs. So I've signed up for a support group (run by a different organization this time) for people who have lost close relatives to cancer. The group will start in December. This time, I think, I’ll be able to give more space to the infinite variety of ways in which people deal with their grief. Hopefully, the others in the new group will also make room for mine.