Coming Home

August 27, 1999
Sorry this is going out so late, but the reason will soon be apparent. This week could have been better, as they say. Timmi spent Sunday night as planned in the hospital getting the final dose of this course of chemo, and we left the hospital late Monday. Tuesday Don left with the other kids for camping in the Galil (they had a very good time), and Timmi and I had planned to do fun things in Jerusalem for the rest of the week. Well, we got to one movie ("Waking Ned Divine", highly recommended), and by the end of the movie she felt so weak she could hardly walk. At home we discovered she had a fever, so it was off to the hospital at 2:30 AM; we hardly slept that night. We ended up staying till this afternoon (I'm writing this on Friday PM).

Going to the hospital due to a fever following a course of chemo is quite routine, as the treatment lowers blood counts. We had hoped to avoid it this time because of the naturalistic stuff she was taking, but that didn't happen. Her fever went down as soon as she started getting IV antibiotics, however, the cultures they took were negative, and her blood counts were up today, so they released her after only three days; normally it takes longer. So we got off relatively cheap.

She was feeling quite low, both physically and emotionally, while in the hospital, but as soon as we came home she did Reiki to herself for an hour and a quarter, and now feels significantly better.

Shabbat Shalom to all; see you in Shul.

Love, S.

August 29, 2004
Coming home from the hospital was often a mixed blessing for Timmi. On the one hand, the hospital was stressful, uncomfortable and boring. On the other hand, while in the hospital she would fantasize about coming home, and then become disappointed at the reality of returning to the problems and bickering that characterize every family, no matter how close. The underlying love was sometimes camouflaged by the conflicts, and she had trouble getting used to that.

Last week, we had a very different kind of homecoming. Our 19-year-old daughter Elaine returned from Denver, wearing a T-shirt that boldly proclaimed: “Hate is Not a Strategy.” She had spent three weeks as a counselor and Israeli delegation head in Building Bridges for Peace, a program that brings Jewish and Israeli Arab and Palestinian teenage girls together for a two-week intensive dialogue camp. There, the girls learn to express themselves honestly, deeply listen to others, and build relationships across the chasm that separates them, all on the basis of empathy and compassion. This year, she'll direct a follow-up program in which the girls will continue to discuss hard, life-and-death issues in an atmosphere of mutual respect, and initiate joint projects promoting peaceful coexistence.

Timmi would have been proud of Elaine. Timmi herself had profound compassion for all God’s creatures. She could not even bring herself to harm insects – no matter how small, and even when they frightened or disgusted her - and always took the trouble to shoo annoying flying or creeping creatures out of the house rather than kill them. She always used to say that we cannot possibly know another creature’s inner life – whether or not it has thoughts or emotions of its own – and that we must therefore always behave on the assumption that it has feelings and experiences pain. For other people, her compassion went even deeper, and she respected every human being who was created in God’s image - including those with whom we are locked in a seemingly endless conflict.

And Timmi always stood up very firmly for what she believed, even in the most difficult circumstances. After she died, during the shiva week of intense mourning, one of Timmi's classmates related that for some weeks, on her way to school, she had passed by a wall on which someone had written “Death to the Arabs.” She told us that she debated with herself for a long time whether to do anything about it – being seen erasing the inscription could cause her to be attacked by the radicals who had written it. Then she thought to herself, “What would Timmi have done?” That night after dark, she went out and painted over the slogan. She told us that she had no doubt that Timmi would have done the same – except that she would have done it in broad daylight. It means a great deal to me that although Timmi herself can no longer act directly on her principles, there are others who are willing to take action on the basis of the ideals she left behind.

Timmi died at the beginning of 2001, just as the most recent outbreak of severe violence between Jews and Arabs was starting. Each of the two events has sharpened my feelings about the other. Having lost a child, I feel very keenly the loss of every child killed in the conflict – whether Israeli or Palestinian – and every child’s death brings home yet again my own unfathomable loss. A child killed or gravely wounded can no longer be a mere statistic. Every such child is an entire world, and means the world to her parents. I can no longer relate to questions of blame – only to the tragedy of a life destroyed and of a family bereaved. I believe that Timmi also saw things that way, and would have been very happy to see her sister acting on that world-view, which she also shares.

While Timmi was in the hospital, she held on to an ideal of family love, which helped her to get through. In the midst of the hatred and turmoil currently infecting our region, Elaine holds on to her own vision of a different world. Like Timmi, Elaine is returning to a difficult and conflicted reality. But unlike Timmi, Elaine will continue to have the opportunity to contribute, if only in a small way, to making her vision a reality. She’ll have the chance to learn that while coming home is sometimes very hard, in the end home is what you make of it.

Living in the Present

August 23, 1999
Timmi has had a relatively good last few days. After several days of weakness and nausea, she started feeling better and stronger and now is doing quite well. She has just finished the day-care part of this course of chemo, and will be hospitalized overnight Sunday-Monday for the last treatment of the course. Then right before Rosh HaShana she will have another PET scan to see whether and to what extent the chemo reduced the extent of the cancer. If the cancer was significantly reduced, she will get another, I believe identical, course of chemo and then proceed to the planned transplant. If the cancer was not significantly affected, the next step will be the transplant.

So once again we get to spend Rosh HaShana waiting for the results of an important test... so it goes. The main thing is that for the moment Timmi is feeling well. The Reiki certainly helps, and she herself is better at it than anyone else in the family!

Shabbat Shalom to you all and see you at Shul.

Love,
S.

August 22, 2004
One of my daughters is scheduled to undergo a medical test tomorrow. Over the past months, she's been having abdominal pain, which has become more frequent and more severe as time goes on. It's been very hard to see her suffer. But now, waiting to find out what's wrong, my empathy for her at the present moment - and possibly my ability to help her as much as I can - are both in danger of being overwhelmed by my anxiety about the test results. I have learned, though, that if I concentrate on doing what I can in the present and try not to dwell on what the future may bring, I'll be able to find a measure of serenity despite my fears.

For me, as (I believe) for any parent of a child who has had cancer, waiting for the results of tests to determine a child’s undiagnosed medical problem is torture. I know that my fears are irrational – the overwhelming probability is that, while she may have a serious chronic condition, her life is not at stake. The problem is that the overwhelming chances were also against Timmi having cancer.

Because that probability was so low, as a matter of fact, Timmi almost died at the age of twelve. Although her pain appeared in the spring, steadily spreading and worsening through the summer and fall, no one thought the probability of leukemia was high enough to test for it until six months after the symptoms first appeared, when she was so anemic that she wouldn't have lasted more than a few more days without a blood transfusion. (Now, of course, the words “she might have died” are ironic. Still, catching her illness in time for treatment gave her another six years – a hard six years, but an entire adolescence.)

So of course it’s not surprising that I feel a deep anxiety when one of my children is in pain and I don’t know why. Knowing the probabilities can’t help any more – we were on the wrong side of the statistics once, so why not again?

I think, though, that a great deal of my anxiety is the result feeling that if I can anticipate something, I can control it. This is the illusion – if I can just know what I’m dealing with, then I’ll be able to do what’s needed to make it better, to make it go away. When in this mode, I live in the future, weighing this eventuality against that course of action, waiting to “know” and planning my moves for when I learn what there is to learn. Of course, knowledge does give us some control. Even when Timmi was finally found to have cancer, she was misdiagnosed at first as suffering from a rare tumor that has nothing in common with leukemia. Our anxiety then caused us to question the diagnosis and insist on reexamining the biopsies; had we not done so, she would have received the wrong chemotherapy and died right then. (There it is again, “She could have died…”)

But ultimately, there’s a limit to how much we control. All our knowledge, all the medical protocols with their 80 percent “cure rate” for leukemia, couldn’t save Timmi’s life, or give her a happier one. All that anxiety didn’t keep her alive. But the fear did drain my emotional resources, and made me less available to Timmi, to my other children, and to Don.

Our need to believe that we're in control also engenders guilt. When I was attending a support group for parents who had lost children to cancer, one of the members of the group kept tearing himself apart for not having saved his son. “I promised him I wouldn’t let him die,” he said over and over again, “and I fell asleep on duty.” It’s so tempting to believe that if we had only done more, or done things differently, our children would still be alive. We're willing to believe this even when the belief causes us overwhelming guilt. But that guilt can become an obsession, taking up all our emotional energy and insinuating its way into our relationships with our other loved ones.

Anxiety and guilt – these are fruits of our need to believe that what happens to us and our loved ones is entirely in our hands. They can consume us, pushing out everything else in our lives. But I’ve come to understand that any control I have over my life exists within very narrow boundaries. So very much that happens to us and to those around us lies in other hands. This understanding is liberating, and frees up a huge store of emotional resources for my family, my work and other important parts of my life. And more than that - the insight goes far beyond the psychological to the very root of my religious experience: When I let go of my tight hold on personal power, then I make room for a higher power to come in and heal me. Christians call this act of letting go “giving it up to God.”

I was able to do this, sometimes, while Timmi was sick. I was able to live in the moment and let go of my anxiety over what this test would show, what effect that therapy would have. I could just be with Timmi, the others in my life, and myself. If Timmi felt good for the moment, I rejoiced. If she hurt, I tried my best to think what I could do right then to help her – massaging her feet, taking her to a movie, getting the hospital staff to increase her pain medication… Those were the times that I was not only more serene within myself, but also more effective, and “there” for Timmi and for my family.

So I've learned that the only way to deal effectively with the trials life keeps throwing at me – including my children’s problems, whether medical, emotional, economic or any other – is to leave guilt to the past and avoid becoming overwhelmed by fear for the future. It’s far from easy, but I’m trying my best to live as fully in the moment as I can, while still remaining a responsible adult who knows how to plan for the future. Those times that I succeed in this - in doing whatever I can for the moment, but acknowledging the limits of my power and giving my fears and anxieties up to God, I come closer to becoming both whole within myself and wholly with the other people in my life.

Healing

August 10, 1999
Sorry there was no update last week. Timmi had a week's break from chemo last week because her blood counts were too low. Yesterday she resumed, and things are going as well as can be expected. She has now been to three treatments of Reiki (a kind of energy healing) and has found it wonderful, both from the physical and the emotional points of view. This Friday she, Shari and I will (God willing) begin to learn how to do it ourselves (one can do it, once learned, to oneself or to others and even from a distance, it is claimed). That will be very good during the transplant. Timmi has already successfully taken away a case of nausea for Aimee, but she already had certain hands-on healing powers. Only, she could never get it to work on herself...

Other than that, things just go on. I myself am starting to lose it a bit from the strain, so next week Don will give me a break and take over the hospital visits several times. That will be very good!

August 17, 2004
What does it mean, to be healed? It’s not the same thing as being cured. As a religious person, I believe strongly that true healing must touch the spirit – a human being’s essence. We all know that the spirit can heal even when the body is sick or shattered. We’ve all known, or heard inspiring stories of, people broken in body but whole in heart and soul. Was Timmi one of them? Her body was not cured, but might she have been healed in the deeper sense?

Timmi was a natural healer, a vessel for a life-affirming energy that would pass through her to others when she laid hands on them. Her older sister Shari continues to this day to practice the Reiki the three of us learned together. Aimee and our son Danny (then 11 and 10 years old) also took a Reiki course for children. Danny even went on to Level 2, which includes healing from a distance, and still occasionally lays hands on his schoolmates when they fall down or don’t feel well. But Timmi’s relationship with this kind of healing was the deepest, perhaps because she was the most in need of it. I believe that in laying hands on others, she was in some way also healing herself.

Timmi loved being able to ease others’ pain or discomfort. She had a light touch that streamed calm and warmth into the person on whom she was laying hands. Even when her own energy was depleted, she would sometimes let the healing energy stream through her into others. Once, during a hospitalization for treatment (I believe it was the hospitalization for her second bone marrow transplant), T – a hospital volunteer with whom she had a special relationship – came to visit her feeling nervous and upset about something that was happening in her life at that time. Timmi got out of her bed and made T lie down in it. She then stood by the bedside and gave T a Reiki treatment. T fell asleep almost instantly and woke up a short time later feeling much better, saying she hadn’t had such a refreshing and relaxing rest in a very long time. Timmi later told me that the healing energy that had passed through her body into T had made her feel much better also – physically as well as spiritually.

Timmi’s Reiki didn’t work as well for herself as it did for other people. It would sometimes help her lie still and rest – even sleep some – during long sleepless nights. Sometimes, it took the edge off her pain. As things got worse for her, it stopped having any real physical effect. But that, it seems, was not the end of the story.

Timmi’s Reiki teacher once told me that she had gotten a strong message from the spiritual world that Timmi would eventually become a spiritual teacher and healer. As a Jew with a rational approach to my religion, I didn’t know what to think about this. I believe enough in the existence of energetic forces that we can’t see or measure to have taken the Reiki course, to practice it and to be treated with it. But to communicate with them? And after Timmi’s death, my skepticism seemed confirmed. Clearly, she could no longer become a teacher, healer or any of the so many other things she could have been.

A year and a half later, I was in synagogue on Shavuot (a Jewish holiday seven weeks after Passover). When the time came for Yizkor, the prayer for remembering the departed, I began crying uncontrollably as I almost always did – and often still do – at that point in the holiday services. (Synagogue was almost the only place where I was capable of crying for Timmi.) My weeping lasted well past Yizkor into the next part of the service. When I finally had run out of tears, A – a friend who was sitting next to me, who herself practices Reiki and other forms of energy healing – came closer. She said, “You’re going to think I’m crazy, but I’ve just seen Timmi, and she has a message for you. She told me to let you know that she’s fine now. She wants to help you. She is now where she should be, but that shouldn’t come at the price of your constant suffering – she said your perpetual anguish was disturbing the harmonious order of things.” She went on to tell me how Timmi looked in her vision.

Before that moment, I would never have thought that I would believe such a thing. But as soon as I heard it, something inside me responded as to a deep truth. And that message was the turning point in my own healing process. For a year and a half, I had been almost completely numb, incapable of feeling either the pain of Timmi’s death or deep happiness of any kind. I floated through time, wondering if I would ever again experience true emotion. Then, when A gave me Timmi's message, the fog lifted. I began going places in psychotherapy that I hadn’t been able even to approach before then. I also started feeling Timmi’s presence, usually in synagogue. I remember feeling her very strongly at the Bat Mitzva of the younger sister of Tami, a girl she had counseled in Scouts. When Tami read from the Torah as part of the women's reading in honor of her sister, I remembered how much Timmi had loved reading and how beautifully she had read from the Torah - and I felt she was there with Tami and me. Another Shabbat, at the very end of Adon Olam ("Lord of the World," the song with which we end the Saturday morning service), I felt her presence when we sang “And if my spirit should leave me, the Lord is mine and I will not fear.”

I no longer sense Timmi’s presence directly, which makes me very sad. I don’t even see her in my dreams, though I long to – even if it would mean waking up to her absence from the "real" world. But the ability to feel deeply that she restored to me has remained, together with the more rational sense of what she left behind for me and for our family just by virtue of our having lived with her for those eighteen years. And other people continue to feel her presence. Both A and Timmi’s Reiki teacher have told me that sometimes, when they lay hands on people who have come to them for treatment, they feel that Timmi is there with them, helping them heal others - just as she helped me start on my own road to healing (which still stretches a long way ahead of me). Many people who knew her have also told me that what they learned from her during her lifetime continues to guide them in a very profound way, and in that way she remains present in their lives as well.

I can’t answer the question whether Timmi’s spirit was healed while she was still with us in this world. But it seems that perhaps she has become a healer after all, and a spiritual teacher as well, in the next.

Routine

July 30, 1999
Hello, everybody. I hope to make this update a weekly feature, before Shabbat (hopefully not this short a time before Shabbat, usually).

Timmi had a relatively good week, considering that she is now in aggressive chemotherapy. We were in Day Care four times for chemo, plus twice she got blood due to her low hemoglobin. The hemoglobin problem makes her tired, but other than that there have been no discernable side effects, probably due to the naturalistic stuff that she has started taking (I may need a source to bring it for us from the US - anyone out there who can do it?). She and I went to Yakara's wedding on Tuesday night, and she held up fine and thoroughly enjoyed it. Her mood has also been quite upbeat this week, and she has been relatively active outside her time at the hospital. We all hope the routine, the lack of side effects and the good mood hold up.
As for me, despite the relative quiet the routine was somewhat taxing, and I am quite tired. Hopefully Shabbat plus Sunday with no hospital should help, although Sunday I have to get done a whole week's worth of errands. Oh well...

Love to you all.

August 13, 2004
It’s Friday, and our Shabbat preparations are finished. The food is cooked, the house and the kids are clean, and things are pretty quiet. Don rebuilt our workroom for most of the day, so my computer was out of commission and I’m only starting this a short time before the time comes to light the Sabbath candles. I’m hoping that his blog will become a new routine for me, as I hoped to do with the “Timmi updates” five years ago. At that time, of course, the updates took only a tiny part of the time I spent on Timmi and her illness. But as exhausting as that routine was, it's amazing how much I miss it today.

To anyone who isn’t experiencing it, taking care of a child with cancer seems a Herculean task. The long stays at the hospital, the constant running back and forth when she isn't hospitalized, the daily routine of coaxing her to take her gazillion different medications, the putting your life on hold for a year or more – all this seems extraordinarily daunting, if not impossible, to most people. And it certainly is exhausting. Many people don’t know just how tiring it is simply to sit at that bedside all day. Even on days when Timmi didn’t need me to run around the various floors of the hospital – to arrange medical matters or just to bring her some candy from the concession (when she was eating) – I’d leave the hospital feeling as if I’d been working on a chain gang all day. All the parents on the ward know that feeling – you keep your energy and spirits up all day in order to keep your daughter as cheerful as possible. Then, when the next “shift” (other parent or sibling) takes over, the energy drains out and you say to yourself, “Why am I so tired? I just sat around all day doing nothing!”

But now I know that this grinding routine served some very important functions for me.

First, it gave me something positive to do for Timmi. One of the worst aspects of having a seriously ill child is the helplessness – something truly terrible is happening to her and you can’t protect her, or make it better. All that running around allowed me to participate in the healing that took place (and to some degree it did take place, as she lived six years longer than she would have without treatment, three of those in remission).

Second, so long as I was taking care of Timmi it was clear as day that I was “choosing” the activity with the highest possible priority. Before that, my life as a full-time-plus working mother of seven children was a maze of conflicting demands. Which child most needed my attention at any given point? Who should come home early enough to pick up the youngest ones from day care – Don or myself? To what degree of self-fulfillment should I aspire – not only for myself, but as a role-model for my daughters? When a child has a life-threatening disease, these questions are pushed out of the picture. (Although the psychological questions related to Timmi and our other children were intensified – more about that, I think, in a later posting.)

Finally, of course, the routine kept my mind off the underlying ultimate fear – that treatment would fail and I would lose my daughter. Every new treatment, however experimental, allowed us to hope that this time we would really beat this thing. And because the future was impossible to divine or even plan for, I was able to a much greater degree than ever before to “live the moment” – to be where I was rather than reliving the past or anxious about the future, and to appreciate whatever good things that particular moment brought with it. Who would have thought that there are some advantages to having a child with cancer?

I only learned how important this routine was to me when it vanished overnight after Timmi died. Suddenly, I didn’t know what to do with myself. I had left my job three months before her relapse, and stopped looking for a new one when we got the diagnosis; it took me almost two years after her death to become functional enough to start working (half-time) again. The future seemed to stretch before me with only one organizing principle – I would be a bereaved parent for the rest of my life. In the present, there was an extraordinarily fine (so fine as to be practically non-existent) dividing line between feeling overwhelmed by what I had to do, and feeling that I had absolutely nothing to occupy me. The past, of course, almost didn’t bear contemplating.

With the medical routine, I lost a whole world in which I had been immersed, a framework that kept me stable and gave me a place. What was I now to do with all the knowledge that I had accumulated – the ins and outs of our HMO’s and the hospital’s bureaucracies, to whom to go with special requests, where and how to get what Timmi needed. And what about all the relationships I had formed – with the dedicated nurses on the ward and in Day Care, with her saint of a doctor? It sounds very strange to someone who hasn’t been there, but other parents have told me the same thing – I actually missed the hospital, as hard as it was to be there. (To this day, I sometimes find myself on the road to the hospital when I should have turned off the road in order to get where I’m going.)

In many ways, Don feels the same. He and my older daughters were the ones who would sleep with Timmi at the hospital, sometimes getting up at 4:30 to make it to his bus to work. Sometimes he would take a bus straight from work to the hospital, and miss seeing the other kids that day. After Timmi died, he told me once that when he passed the stop from which he would take the bus to the hospital, he remembered how he used to find the nights in the hospital so hard; but at that moment he would have given anything to be getting on that bus with a long hospital night ahead of him.

All this, of course, was really a metaphor for the real loss, the truly unbearable one.

Nowadays, I have a kind of half-routine. I get the two children who are still living at home up and out to school (during the school year), I say my morning prayers, eat breakfast and go to work. I work five hours (I tried to increase it to six, but discovered that I don’t yet have that kind of energy). But when I come home I often still don’t know what to do with myself. During the ten years since Timmi was first diagnosed, my children have grown up and the youngest is now thirteen; they are in school until late afternoon. I don’t have the heart for housework or taking care of family business unless it’s urgent. The family dinner has fallen by the wayside many evenings, as Aimee often stays in town with her friends after school (all the more so in the summer) and Don often comes home late from work; much of the time, I also can’t seem to scrape up the energy to cook.

The best time is Shabbat. Here, my routine has been set for me; I again know that what I am doing is what I am supposed to be doing at that particular time. This is the one of the things I love best about Judaism – this framework, this wealth of opportunities we have to know that we're doing what’s important at a particular moment. On Friday, I'm motivated by the approaching Sabbath and cook several dishes that my children love. Friday evening Don and I go to synagogue, and when we come home we have a long family dinner, for which three of our older daughters (the ones who live in Jerusalem) almost always join us. In the morning we again go to synagogue, talk to people at kiddush afterwards, and then come home for another (smaller) family meal. I then take a nap, and after I wake up I read, go for a walk with Don or talk with him or my children.

I am finishing this piece after Shabbat has ended; writing this blog is staving off my usual end-of Shabbat depression. What I have to look forward to this week is the same as any week – work, some interaction with my children, reading, being with Don. While Timmi was in treatment, that kind of “boring” week would have sounded like heaven. Now, like Don, I often feel that I would give anything to be spending my time and energy on the exhasuting routine of caring for her.

Love to you all - S.

Hair

July 25, 1999
If anyone is going to the Tel Aviv area on Wednesday and would be willing to deliver Timmi's wig to the wigmaker in Ramat Gan for some further work, please let me or Don know. And if there is anyone who would be able to return it from Ramat Gan Thursday afternoon, ditto. If we're not in, you can leave a message on our voice mail with your name and number.
Thanks very much!

August 10, 2004
This morning, I peeked into my 14-year old daughter Aimee’s room. She was sleeping peaceful, holding (as she always does) the stuffed lion that my sister’s officemates sent to Timmi during her first bout with cancer. The sun was shining in, and she was glowing radiantly – not only because of her beautiful, calm face but also because of her bright pink hair! What has she done to herself? I cried internally. Her hair was so beautiful the way it was! But then I remembered…

Timmi lost her long blonde hair the first time when she was just 12, in the middle of the very aggressive course of chemotherapy that she was undergoing in anticipation of her first bone marrow transplant. When her hair first started coming out, she had it cut short. But when it started getting all over her clothes and then into her food, we decided to take matters into our own hands. I called my hair stylist and asked him to come to the hospital with an electric shaver. He came and “took it all off” – although the idea clearly freaked him out. What we found underneath was an absolutely beautifully shaped head – much admired by the nurses and by the other pediatric cancer patients. We also found that taking off her hair accentuated her eyes and her lovely chiseled features. She decided that she would not wear a wig, but would remain “au naturel,” seeing as she looked so good that way. At the time, Sinead O’Connor and some other celebrities were showing off the shapes of their skulls, so she was really the height of fashion. For variety, though, she went out and bought several hats.

Reactions when she left the hospital were often quite funny. Once, a girl sitting behind her at the movies leaned forward and whispered, “How did you dare?” Another time, on a visit to Florida, she went to use the restroom at a mall. A woman came in as she was washing up, looked at her and said, “This is the Ladies’ Room!” “I am a Lady,” our daughter-of-the-snappy-answers replied.

The father of a good friend of Timmi’s has been bald since his twenties, when his hair fell out for no apparent reason. The first time we ran into him after the events of which I speak, she snatched off the hat she was wearing, and pointed animatedly at her head. “Look! I joined the club!”

Timmi’s hair started growing back after the transplant. But because of the anti-rejection drugs she was taking, it came in lifeless and mousy. She was, of course, very upset, but then decided that she would just have it colored. She dyed it a coppery red; I was surprised at the fact that despite the fact that she was naturally blonde, she looked good as a readhead as well. But the real surprise came when she stopped taking the medicine and her “real” hair came back in. It was the most beautiful hair I have ever seen – baby-fine but thick, wavy to curly – and almost exactly the same color that she had dyed it!

We have a collage she made, of four photographs of herself. Timmi as a curly blonde girl, Timmi with a perfect head unencumbered by hair, Timmi with the short colorless hair that came in right after the transplant and, in the center – a radiant fifteen-year-old Timmi with long, thick, wavy auburn hair. Perhaps one day, if I ever decide to "come out" in this blog as myself, I will publish that picture.

When she relapsed, Timmi once again lost her hair. This time, though, it was no longer any fun. All this hair stuff – all this cancer stuff – should have been behind her. She was not interested in sticking out, just when her life had started to bear some resemblance to a normal one. So we had a wig made for her, a natural auburn wig with which she was able to go out without anyone asking her any questions. She had it for the rest of her life, and after she died we donated it to an organization supporting children with cancer and their families.

Aimee, color your hair pink or any other color you want. I thank God that you have it, and that I still have you.

Deciding to Write

July 22, 1999
I have decided to update the Kehilla on Timmi's condition, to the extent I can, by email rather than orally at Kiddush because it is somewhat tiring for me to go into the whole story each Shabbat, and also because not everyone comes to Shul every Shabbat, so I end up telling the story several times each week when I run into people. For those of you who read this, thank you immensely for your interest, and if you have any questions regarding the contents of my updates you are more than welcome to come up to me at Kiddush and ask - I just don't want to have to go into all the facts over and over.

Timmi and I were supposed to be in Paris together last week. She had joined the Zichron Menachem camp for children with cancer, and the camp was to go (and did in fact go) to Paris for four days at the end of the camp. I was to meet Timmi in Paris at the end of their stay, and stay with her there for another week at the home of a high school friend of mine. Unfortunately, while at the camp Timmi started feeling very bad, both physically (she had both pain and a bad reaction to her pain medicine) and emotionally, so that she had to come home early from the camp. Because she missed Paris, I took her last week for three days to Tel-Aviv to do fun things with her there, but because of how she felt she was unable to enjoy more than a few hours of our time there. On our way home, we stopped at Sha'are Zedek Hospital and consulted with Dr. N., an oncologist and pain specialist, who completely changed her pain medicines. In addition, he suggested that Timmi may be suffering from a clinical depression, and that we may want to treat her with anti-depressant medication.

In addition to her other problems, Timmi has had for the past week or more difficulty drinking - it gives her stomach pain and nauseates her. As a result, when we arrived at the hospital on Sunday she was quite dehydrated, which of course we now realize had made her depression worse. Rehydrating her made her feel much better, but both she and the hospital staff decided that it is best for her to take an anti-depressant in order to prevent the depression from recurring. Since then, she has been up and down several times, but we hope once the medication kicks in she will start to feel consistently better, at least emotionally.

As for her physical condition, she has been hospitalized since Sunday for more aggressive chemotherapy than she has received so far this time around. Her pains are, if anything, becoming worse, which is difficult to interpret - it may be a sign that the chemo is starting to work. We certainly hope so. If all goes according to plan, she will leave the hospital Friday and go in for treatment four times a week over the next three weeks, as an outpatient. We have some natural stuff that is supposed to help with the side effects, and hope it will work. At any rate, she will soon lose her hair but has already got the wig she ordered, and likes it, so the hair loss should hopefully not be too much of a trauma.

So many of you have offered to help with physical things - errands, cooking etc, and we are really very grateful. There is still little anyone outside tha family can do, but I did think of one thing - on Shabbat I cook for my kids rich cheesy dishes that I myself have trouble eating, as it seems I have developed a certain degree of lactose intolerance in my mature years. I would therefore greatly appreciate receiving one parve main dish every Shabbat, preferably in a disposable pan, to save me some cooking at least. Anyone willing to help should call D.G. to coordinate dates.

Thank you all again for your love and support.

July 28, 2004
As I decided to start writing regularly five years ago (almost to the day), so I’ve decided, finally, to start writing again.

A great many people have suggested that I make these email updates into a book. I was told that the updates were followed avidly and even eagerly anticipated by their readers, whom they touched deeply. People felt that the updates helped them, by example, to deal with hardships, traumas and losses in their own lives, and that a book could reach – and perhaps help – many more.

The fact is that I myself found a great deal of comfort in writing these messages. It may be that writing helped me get a handle on what I was going through – if only by putting it into the language that we all use, in a form that could be looked at, reacted to and stored as a tangible “thing.” Did this help make sense of it? I don’t know. I do know that I express myself more thoughtfully in writing than orally, and so the act of putting my experiences, Timmi’s, and our family’s on paper may well have lent a certain organization to circumstances that are by their nature chaotic and incomprehensible. Also, in writing I was able to reach out to other people, to include them, without having to deal with their “real-time” reactions to what I was saying – whether over-serious/over-emotional, or not serious/not emotional enough (in fact, it was impossible for anyone to get it just right; more about that, probably, in a future installment).

So I’ve been thinking of writing again for some time. But I’ve been blocked. For years, just sitting down at the computer with the intention of writing anything personal has caused a wave of exhaustion to wash over me. Clearly, I wouldn’t be able to find the right words, the right tone, the right anything to make what I write worth reading. I admit it, I’m scared. What if the only things that come out are trite, boring, over-dramatic, stilted? What if all I have to say has been said a million times before? What if I can’t say what I need to – or have nothing to say? What if I really do have nothing to offer? I feel like I’m taking a real risk. Recent conversations with friends, though, have inspired me to just go ahead and try. I know it won’t be easy. But if this journal manages to express even a small part of that something for which there are no real words, then it will have been worth it.

So here they are, my reflections five years later on the experiences that changed my life, and that of my family, far more deeply than words are capable of conveying. But, in the end, I believe that God gave us words so that we may use them to reach out and share with each other.

Glossary for this update: the Kehilla is the religious community in Jerusalem of which I am a grateful member. Shul is Yiddish for “synagogue.” Kiddush is the ceremonial drinking of wine after Shabbat (Sabbath) services. Parve means neither milk nor meat.