Yahrzeit

December 16, 1999
Timmi was hospitalized this last Sunday in the bone marrow transplant department at Hadassah. Because she had a strange blood count, though, the chemo preparation for the transplant did not begin right away, so the doctors could figure out the reason for the abnormal count. This morning, the doctors aspirated and tested her bone marrow, and found that the reason for the abnormality is that, unfortunately, the cancer has spread beyond her bones themselves and into the marrow. This is, of course, not the most reassuring news that we could have gotten, but it was explained to us that this development does not significantly affect her prognosis or her planned treatment, as these already reflected the fact that the disease is active. She took the news in that spirit, and this evening went out with Shari to a movie and dinner.

Tomorrow morning her treatment will start. She will receive chemo that will not have serious side effects during the first few days, and will probably be able to sleep at home tomorrow night but after that she will probably start sleeping in the hospital for at least a month. Next Wednesday Shari* will start receiving daily injections to increase the number of bone marrow cells in her peripheral blood, and then the next Sunday and Monday the cells will be harvested and the transplant will take place.

Timmi definitely does not want adults, even those she knows well, to visit her in the hospital.

As hard as we expect it to be, we are very glad that the process will finally start tomorrow, and pray, of course, that it will be successful. Thank you all for your wishes and prayers as well.

Love,
Sara

*Lisa (our oldest daughter) was Timmi's bone marrow donor for her first transplant; Shari (number three and just before Timmi) was the donor for the second.

December 25, 2004
Last Wednesday was Timmi’s fourth yahrzeit (Yiddish for "anniversary of death"). This year we put a lot of thought into how to mark Timmi's yahrzeit. On the one hand, it's important to Don and me to hold the traditional ceremony by her graveside, as we have for the past three years. The ceremony is public, and announced to our religious community, friends and extended family. This is important for two reasons – first, the presence of a minyan (quorum of ten men) allows us to say Kaddish, the prayer sanctifying God’s name that is recited by Jewish mourners at the funeral, during the mourning period following the death, and on the yahrzeit of a close relative. Second, it recognizes Timmi as a person who affected many others beside her immediate family, and gives them the chance to mourn her as well.

Some of our children, though, have a problem with the public ceremony. For them, mourning Timmi is an intensely private affair, and they strongly dislike having others – especially adults, and even more especially adults with whom they have no relationship - present at this most personal of moments. For many of the same reasons that Timmi didn’t want adults to visit her while she was in the hospital, the children become upset when people who are almost strangers come up to them, look at them pityingly and try to touch them – even to hug them. Although I understand that these gestures come from a deep caring, the children find the experience profoundly disturbing. On the other hand, they do want a graveside ceremony at which they may express their mourning on the day of the yahrzeit.

So this year, we decided to hold two ceremonies on Wednesday – a public traditional ceremony followed by private time for just our family. Two days later, the girls in Timmi’s high school class also held a gathering in her memory; I’ll write about that gathering in my next post.

At the public ceremony, we observed the traditional customs of reciting Psalms chosen in accordance with the letters in Timmi’s name, the mourners' Kaddish, and the prayer for remembering the departed, “El Male Rahamim” (Most Merciful God). In the middle of the service, the mother of Timmi’s oldest friend, Nechama, read aloud a very moving letter that Nechama had written from Italy. In her letter Nechama (who knew Timmi since they were babies together) expressed her pain at losing Timmi in words that reflected my feelings and those of many others of the many, many people who loved Timmi. The letter opens thus (I’m translating from Hebrew):

“Four years have already passed, years that seem like an eternity. Years without you. Years of explaining about you, and anger at having to explain at all. When you lay in your deep, final sleep toward the end, your mother invited me to write you a good-bye letter. Good-bye!!! To this day, that letter is somewhere in my head, and I haven’t been able to write it the way it should be written. It’s still not everything I wanted to say. When you left, you tore off a huge piece of me. And not only did that piece go with you, but there’s only one person to whom I could explain it, and that’s you – and you aren’t here. But at the same time, something was added to my life – a greater desire to live, memories and scenes that I take in for both of us, things you never got to experience. How beautiful this world is, how many incredible views I see in my head… and how these views fill with sadness every second that you’re not here.”

At out family’s graveside gathering, we found ourselves especially remembering Timmi the writer. Some of our memories were tinged with the sadness of being reminded that some things have been lost forever. Lisa told us that when Timmi was in high school and Lisa was spending a few months with my sister in California, Timmi mailed her a story she had written. “I’m not going to insult your intelligence by interpreting the story for you,” Timmi wrote in the accompanying letter. Lisa remembered that the story was extremely subtle and complex, and that in fact she did find it hard to understand. But she couldn’t bring herself to ask Timmi to explain it to her. “What, here I was, her big sister, whose intelligence she said she wouldn’t insult by interpreting the story – was I really going to ask her for an explanation?!?” But now there's nothing she’d want more than to ask Timmi what her story meant, and to hear her answer.

Elaine also remembered a story Timmi had written when she was in sixth grade, and Elaine was in third. “I can’t remember the details of the story,” Elaine said. “But I remember thinking at the time that it was the most brilliant story I’d ever read. Years later, I wanted to read the story again, and asked her whatever became of it. She told me she’d thrown it away because it wasn’t good enough.”

But not all of Timmi's writing was lost. Thankfully, she left behind many stories, poems and drafts of poems. And so, as the afternoon drew to a close, as the sun set over the Jerusalem hills, Don sang us one of Timmi’s unfinished poems, which he's set to music. The poem, like much of the writing she left us, is beautiful and painful. But I’m grateful for this pain, because it’s one part of Timmi that’s remained with me.

Again, I translate from the Hebrew:

To live this moment
To breathe this time
Not to think what the future will bring, if anything
Not to remember what hurt, what was missed, what was lost
To enjoy the here and now.

Or

To move away from what is
To glide out of time
Toward a dream that was, that will be, that can be
And to forget all the tormented present
Because the truth is unthinkable.

Reversals of Fortune

December 5, 1999
Well, as seems to have happened quite often since Timmi's relapse, the plans for her treatment have been interrupted. As I mentioned in my last update, Timmi was formally hospitalized in the bone marrow transplant department last Wednesday in anticipation of the transplant, although she has slept each night since then at home and was home for Shabbat as well. The plan was for her to start the preparatory chemotherapy tomorrow, and for the transplant itself to take place in about two weeks.

Unfortunately, a low fever that Timmi had been having on and off over the last few days, instead of going away as we had hoped, developed over Shabbat into a serious fever (39C). As a result, she went into the hospital tonight (Saturday night) and will probably receive antibiotics there (pediatric department) for several days. Because she cannot get chemo during an infection, the transplant will have to be deferred.

This is unfortunate for two reasons. One, the in-between period after Paris and before the transplant has been difficult emotionally for Timmi; dragging it out will not do her much good in that department. In addition, Timmi has been feeling cancer pains again recently, which is a sign that things are again going in the wrong direction. While she never achieved full remission this time around, we had hoped that she would start the transplant process with as few cancer cells as possible in her body. The delay in commencing treatment just gives the existing cells that much more time to be fruitful and multiply.

I will write again when I know the revised schedule. Until then, Shavua Tov* to you all.

Love, S.

*Shavua Tov – A good week (a greeting for the day after the Sabbath).

December 10, 1999
Yesterday Timmi was released from the hospital, after having been hospitalized since Saturday night with a fever, apparently due to a virus. As a result, the transplant was deferred, and we must call the hospital on Sunday to see if there is a bed in the bone marrow department. If there is, she will start her preparation then, rather than this past Sunday as was originally planned. If not, she will get the first bed available.

Her mood is rather brittle - she can easily go from up to down, from happy to annoyed and angry, and also (luckily) vice versa. As for me, I am quite tired, having run around all week, and with Chanukah on top of everything. Actually Chanukah, though a fair amount of work, has been fun; Monday evening we all brought the latkes I made to the hospital and had a party with Timmi.

If the transplant really does start next week, at least it will be when the kids are back in school, and for a pretty long stretch before the next holiday.

Shabbat Shalom to all -
Sara

December 15, 2004
Last Shabbat, the Torah portion that we read in the synagogue left us in the middle of the very dramatic story that ends the Book of Genesis – that of Joseph and his brothers. Joseph’s is a story of near-constant reversals of fortune. In one day, he went from his privileged life as Jacob’s favorite son to being sold by his brothers into slavery in a foreign land. In one hour, he went from his status the trusted servant of the wealthy and influential Potiphar to that of a prisoner, with no knowledge of how long he would remain in prison. He was taken from his prison to rule second only to Pharaoh and to marry the Egyptian High Priest’s daughter, ultimately to be reconciled with his brothers and reunited with his father.

Each of the future lives that Joseph might realistically have envisioned for himself at any one time – as a shepherd, as a slave, as a prisoner and as a stranger to his family - turned out not to be his ultimate fate. Though he was a visionary who could interpret dreams to predict the future, he surely couldn’t have mapped out in advance the turns that his life was to take. But Joseph learned to accept that very unpredictability. He learned, and repeated first to his fellow prisoners and then to Pharaoh himself, that all things come from God. That faith allowed him, in each new life in which he found himself, to refuse to give in to the despair that might have paralyzed another in his position. Instead, he strove to be the best person he could be in the circumstances in which he found himself, and to transform evil into good. Through that faith, he was able to redeem his own personal life - and to save the lives of his own family as well as those of countless others in Egypt and its surrounding counties. I am trying very hard to learn, remember and apply this lesson in my own life.

If someone had asked me when I was twenty what I believed was in store for me thirty years down the line, I probably would have answered quite confidently. Clearly, I would be living in a pleasant and stimulating city in the United States. I would have a family of two or at most three children, who would grow up to share my (and my husband’s) values and ideals. These children would already be either starting out in their own careers or advancing in their studies. I would have a high-powered job - most probably in a profession in which I was saving the world, or at least some part of it, for example as a public interest lawyer - and would have reached the apex of my career. Life would be orderly and fulfilling, and the traumas and sadness of my childhood and teenage years would be far behind me.

And here I am living in a pleasant, stimulating city – where it’s normal to see men in civilian clothes walking around with automatic weapons. Just now, I’m contemplating my third career change. I raised seven(!) children, none of whom (so far) started university studies before the age of 24. (OK, so Sheila started studying drumming at a music school when she was 20, but she didn’t go on with music.) To my great pride and pleasure, all of my children share Don’s and my values and ideals, and act on them. But not all of them grew up.

Everyone knows that life throws you curve balls. But some curve balls are harder than others, and more unexpected. Becoming an observant Jew after growing up Jewish but belonging to no religious stream, marrying an Israeli and moving to Jerusalem, changing my career plans, having the formerly unimaginable number of seven children, all those things weren’t in the original plan but were still in the realm of the conceivable. But having a child die of cancer at the age of 18 was - literally - unthinkable.

While Timmi was ill, our family’s life reflected in “micro” – on the day-to-day level – the dramatic reversals that I had experienced on the “macro” level in my own life. Like other families of children with cancer, we lived for years with unexpected developments and changes in plans, any of which could have meant life or death. A delay in starting any one of Timmi's many courses of treatment could have meant the treatment would come too late. Putting off a transplant isn't like putting off a trip to Paris. For six years, I lived with the almost-constant awareness that, as Arundhati Roy writes in one of my favorite books, The God of Small Things, things can change in a day.

Under these circumstances, I had pretty much two choices as a person of religious faith. One would have been to believe at every stage that things would go as we were planning right then. But this would have caused me constant anxiety and frustration at each of the many setbacks we experienced in the up-and-down course of Timmi’s battle with leukemia. Ultimately, it would have thrown me into despair as my expectations were shattered time and time again. When it means blindly believing that all will be well, faith is easily lost when real life trumps expectation.

My other option was to learn a deep kind of patience based on a different kind of faith. This kind of faith doesn’t make any assumptions about the course my life, and the lives of my loved ones, will take. Rather, it keeps me believing in a loving God even in a cruel world. It enables me to go on, even though I know that life holds absolutely no guarantees. It teaches me that I have and will continue to have the strength to do the right thing at any given moment, even when everything around me seems completely wrong. It helps me to try to be the best person I possibly can be even in what sometimes seems to be the worst of all possible worlds. This is the faith I've chosen, and I try my best to nurture and to live by it.

Joseph started out with a dream that made him so sure of his future that he had no trouble bragging about it to his envious brothers. That smug assurance brought about his original downfall. It was only when he learned to concentrate on doing God’s will in the present, and to leave the future in God’s hands, that Joseph’s dream was ultimately fulfilled, and that good came out of all the evil he had experienced in his life. I wish for all of us the wisdom and the serenity to do the same.

The Bare Necessities: Food

December 6, 2004
This post is a continuation of the previous one, "Paris," in which I descibed Timmi's and my trip to Paris five years ago.
Tonight we’re taking Aimee and Danny out to dinner. This is part of a revolutionary new system that we’ve very recently adopted – regular meals. OK, so it’s not revolutionary, but it is a re-normalization of a very important part of our family's life, a part that had fallen victim to our chaotic lifestyle when Timmi was ill, and to Don’s and my emotional exhaustion after she died. It’s one more example of our having to work hard to get to a place that most families take for granted.

Food, as everyone knows, is more than just a bare necessity. Eating can be one of life’s true pleasures, or it can be a source of tension or obsession. How we eat together also has a great deal to do with a family’s dynamics, and with the various relationships and interrelationships among its members. I was always proud that we made sure to have a family dinner every night. I’ve heard that the members of two-career families often eat separately, each according to a seldom-overlapping schedule. But I love eating with my husband and children. As a mother, especially, eating with my children gives me the biological satisfaction of seeing nourishment go into their bodies, and the deep happiness of spending enjoyable time together.

One of Timmi’s symptoms when her cancer first surfaced was a loss of appetite, and she started getting thinner and thinner. This was especially striking because Timmi – like all my children – had loved to eat. As with her other symptoms, we couldn’t figure it out. Because her Bat Mitzva was coming up, it was easy to think that she’d stopped eating out of worry or nervousness. Many people told me stories of other girls who at the age of eleven and a half had stopped eating or suffered all kinds of inexplicable symptoms, which miraculously disappeared after their Bat Mitzva ceremony and celebration.

A scarier possibility was an eating disorder. When Timmi was first hospitalized for tests, doctors and nurses kept asking her about her eating habits. One of them asked her if she thought she was fat. She answered, “Are you kidding? Look at me! And you might as well accept it – No, I am NOT anorexic.”

As it turned out, her bone marrow was stuffed solid with leukemia cells, and the resulting anemia was what caused her appetite to fade away. And that, of course, was only the beginning.

During the treatment for Timmi’s first bout with cancer, and then again after she relapsed, food became a source of near-constant worry and tension. Chemotherapy, radiation and the effects of her bone marrow transplant made her unable to eat for much of the time. Things lost their taste, or tasted different, or hurt her mouth to eat. Just when she could have used any physical comfort she could get, food lost its pleasure for her.

We set about trying to get Timmi to eat any way we could. Hospital food was, of course, out of the question; it didn't appeal to her in the least. We ran all over the hospital – and the city! – buying food that we thought might tempt her or that she felt she wanted. More often than not, she would take two bites and reject the rest. It didn’t taste the way she had fantasized it tasting, or she just wasn't hungry enough to make the effort. She continued wasting away, and there was nothing we could do about it.

(There were, of course, those wonderful times during remissions, when Timmi could again taste and appreciate food. For me, few pleasures matched watching her eat with appetite and enjoyment. The restaurants we visited in Paris were every bit as central a feature of the trip as the city’s museums, monuments, parks and cultural events. She especially loved those chestnuts that sidewalk vendors there wrap up in a paper cone and serve hot. And just as I loved feeding her and watching her eat, she loved sharing the bounty by feeding pigeons and other animals in the Paris streets. I have several pictures of her, for example, sitting outside the Notre Dame cathedral with birds perched along both her arms, on her lap and on her head, where she had pretty much invited them by scattering bread and other goodies for them.)

Our food troubles didn’t stop at Timmi. Due to the demands of her care, the other children’s needs and my job, I was unable to cook for that entire first year. We hired women to take the kids in the afternoon and to cook dinner, and members of our religious community cooked us nearly all of our Shabbat meals. After a while, the children started complaining that they didn’t like the food in the house any more. So I constantly worried about getting food not just into Timmi, but into the other children as well. And as for myself – well, I gained about 16 kilograms (35 pounds) that year, from grabbing meals here and there when I could, from eating out of anxiety or depression, from eating the sweets and snacks people brought Timmi and she could barely look at, and from hundreds of hours sitting on my behind in the hospital.

After a year of no cooking, I lost my love for it. Cooking became a chore and a burden, and meals at home became simpler and less creative. But at that point there was still some stability for the children. They didn’t complain about our meals because we did manage to have a family dinner most evenings, and anyway children can happily eat pasta or potatoes every night. The main thing was that Mama made it. So, as time went on and Timmi’s remission held, we regained a certain equilibrium as far as food and meals went.

After Timmi died, I lost what balance had remained in my life, and cooking, like most other non-emergency activities, fell by the wayside. Don was also emotionally squeezed out. So we started bringing home bagels, ordering pizza or Chinese, or scraping together fast meals from the freezer. We tried splitting responsibility for cooking into his days and my days, but our lack of energy for the task meant that very little got cooked from fresh or whole ingredients. Don and I developed dietary limitations, and the children adopted others (Elaine became a vegan for a while), so that between these limitations and the children’s differing tastes it became almost impossible to serve one meal that everyone could and would eat. As time went on and the children became busier with their own schedule, we cooked fewer and fewer fresh meals. (Shabbat saved us from total abdication - we continued always to honor the Sabbath with hearty meals.)

In a sense, we were repeating what Timmi had gone through. Can’t eat this, won’t eat that, what I want isn’t available without going to a lot of trouble, and I don’t have the energy to take the trouble…

As things got worse over the past year – at least from the point of view of home-cooked meals – Danny and Aimee reacted by absorbing our home’s culinary chaos into their own lives. Most nights, Aimee would stay out with her friends and would eat either nothing or something fast but not particularly healthful. Danny’s eating habits also became increasingly irregular; he would sometimes go for almost 24 hours without eating at all or eating nothing but plain bread. Needless to say, this didn't do much for his emotional or physical state. Explanations were useless, and more than once he told me flat out: “Mom, if I hear another word about protein and vitamins, I swear I’ll go nuts!”

Recently, we brought up food, eating habits and mealtimes with the parenting consultant we’ve been seeing. It was clear to both Don and me that things had to change. We missed having family dinners, and for that matter nutritious meals. We quickly decided to reinstate dinner together as a regular and reliable part of our family life, whether or not everyone is home to eat it; it is worth cooking for “only” two or three people. And once we gave meals together a high priority, we were able to think of ways to accommodate everyone’s dietary needs and preferences, involve Danny and Aimee as active partners in the process, and make eating into a fun activity once again.

Now we have a schedule that really seems to work; it’s been in place now for about two and a half weeks, and I hope it continues to go smoothly. On Sunday, Don works late and I cook for myself and the two children who live at home. Monday is restaurant night, and we take them out to an inexpensive place (they alternate choosing the restaurant). On Tuesday, Aimee plans and cooks diner. Wednesdays, Don and Danny plan and cook together, if Danny has no other plans for the evening. Thursdays we improvise, and I cook for Shabbat – as I've always done – on Friday.

Preparing meals is very routine for most people, and you may be wondering why I’ve spent all this space on the subject. The answer is that I've found the subject to be absolutely crucial. Our new dinner routine has brought our family closer together, just as the old lack of routine was driving us apart. Aimee now comes home for dinner most nights, and Danny has begun to eat a more balanced diet – both at dinner and at fairly regular intervals during the day. He’s even willing to listen when I speak to him about nutrition. The four of us are all pulling together, and enjoying each other’s company in the process. When our older daughters drop by at dinnertime, they find both good food and good company.

In this small (or perhaps not so small) part of our lives, I believe, our family has taken one more step in our journey toward healing. Now, when I think of feeding my children, I feel far less of the frustration and failure that I felt first when I couldn’t feed Timmi at all and then when I couldn’t seem to manage to feed my other children properly. Now, I feel far more strongly an echo of the joy I felt in Paris, as I watched Timmi munch happily on warm chestnuts and share her pleasure in being alive with the other living creatures that she loved to feed.

Paris

December 1, 1999
Here it is, as promised, the full scoop and lowdown on Timmi's and my trip to Paris. I can write this for two reasons: (1) Timmi will be sleeping at home for the first few nights of her hospitalization, including tonight, and (2) I sprained my ankle so I can't run around doing anything else.

As I mentioned to some of you in synagogue, Timmi had a terrific time and the trip did for her what we had hoped - she was very active and so came back stronger physically and emotionally in good shape, with lots of good memories and plans for future trips. The weather was quite bad - very cold, and cloudy all the time (I think we saw a half hour total of sun during the whole trip) but there's so much to do indoors in Paris that it didn't matter. As a general rule, we took cabs to our first destination, but as cabs can practically not be hailed on the street in Paris, we got around the rest of the time by Metro. Timmi at first found the steps hard to negotiate, but eventually the effort strengthened her legs so that by the end she could take several trains a day.

The day we arrived we had to get organized, so the most we could do was go to a restaurant (meat). Nothing to write home about, but an outing, and afterwards we walked a bit around the neighborhood of the restaurant. By the way, we had been seated for all of five minutes when who walked in but Moshe K.! Pretty small world.

The next day, Thursday, we went to the Picasso Museum, which is located in one of the two Jewish areas of Paris. Timmi found it fascinating. By the way, as a general comment she is the best possible travel companion, being interested in absolutely everything and having interesting things to say about all of it. After the museum we went to lunch in a very nice dairy restaurant on the rue des Rosiers. Altogether Timmi's appetite improved in Paris, due probably both to her improved mood and to her increased physical activity. We then went all the way up the Eiffel Tower, which was fun but freezing! We then went back for a quiet evening at the apartment of my high school friend Laurette, with whom we stayed.

Friday we had to prepare for Shabbat so couldn't do much, so we went to see the outside of the Louvre, ate roasted chestnuts and walked through the Tuileries to the obelisk at Place de la Concorde. We then had a lovely Kabbalat Shabbat* with Laurette and her family. Timmi and I sang most of Kabbalat Shabbat and her kids were quite fascinated, never having heard anything like it before.

Shabbat was lazy - we tried walking outside but it was too cold so we just rested (that's what it's for, after all).

Sunday we drove with Laurette and her family to Versailles, and saw the palace inside and out. Despite the sub-freezing temperature we took a mini-train ride around the gardens as well. This was the only part of the trip during which Timmi used the wheelchair we brought, because the palace is simply so large. She loved it, of course. Afterwards she and I went to an experimental dance performance in a very small theater. The first dance was a bit too depressing for us, but the second was fun, being based on childhood games.

Mondays almost all of the museums in Paris are closed, and besides we were both quite tired, so all we did during the day was go to Notre Dame, and out for lunch (again the dairy place on the rue des Rosiers). It was the first time Timmi had ever been in a church, and she found it very beautiful. She was very disappointed that she couldn't climb up the three-hundred-and-some steps to the tower where one can see the gargoyles up close, but we put that on the list of things to do next time. That evening we went to another, somewhat more established experimental dance theater. What can I say? We've both decided we have had enough experimental dance now to last us at least a good year or two.

On Tuesday we went to the Museum of Music (Veronica, bless your heart for having told us about it), where one can see a fascinating collection of old and modern musical instruments, and hear them in great music on headphones. This was really great! After the museum we went to Kookai and got Timmi several items of very fashionable clothes, many of which were on sale, and went out to dinner (again a meat restaurant and nothing special, but pretty nice).

Wednesday morning we went to the Doll Museum, then to a different dairy restaurant in the 5th arrondissement (also very good), and then to the Musee d'Orsay which, like everything else, Timmi loved. We didn't get to see all of the museum so this also went onto our "next trip" list. That evening Laurette drove us around Paris by night - the bridges lit up on the Seine, various monuments lit up, the Champs d'Elysees with every other tree wrapped up in white like a Christmas package (I'm not joking) and altogether the Christmas lights, which of course were new to Timmi. We also drove all around Montmartre and to the Sacre Coeur.

Thursday we flew back home. I must add that both our flights were exceptionally smooth, and the El Al attendants very nice.

As I said, Timmi expects to spend her time during the transplant process planning the next trip, back to Paris and to London and to Italy and and and.....

If you've gotten this far, and even if you haven't, I wish all of you a very happy Chanukah.

Love, S.

* Kabbalat Shabbat – Friday night prayers welcoming the Sabbath.


December 1, 2004
What can I say about that trip to Paris? I’m extraordinarily grateful that I was able to do it with her. There are so many things to say about that trip, and so many themes connected with it – fun, food, clothing, art and beauty, Timmi’s plans for the future…

But the description of the trip is long enough so that I won’t wear out your patience by adding my reflections today. Maybe in the next few days. But for me, for the moment, the memories stand by themselves, and I want – just for now – to simply allow myself to remember, and flow with the many and mixed feelings with which that amazing week has left me.

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.

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.

Singing

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.

Support

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.

Community

October 28, 1999
On Tuesday Timmi left the hospital after being admitted with her expected fever at candle-lighting time last Friday. This was, hopefully, her last hospitalization before her transplant, which is scheduled to take place in about a month. Her mood is still reasonable, especially as we are planning a trip to Paris for two of the weeks before the transplant! In that context, we would be really glad to receive the names and addresses of your favorite kosher restaurants in Paris (whether milk or meat). Also, if anyone could bring to synagogue the French Rabbinate's most recent list of kosher products, I would greatly appreciate it.

Also, it is time to start organizing for platelet donation during Timmi's hospitalization for the transplant. For those of you who were not members of the community when Timmi had her first transplant, or who don't remember, platelets are the blood cells responsible for clotting. Chemotherapy, especially the intensive kind that precedes a transplant, destroys blood cells in general including platelets. In order to avoid the danger of excessive bleeding, transplant patients must receive transfusions of platelets; each patient is required to bring his or her own donors.

[Here I gave instructions on how to donate platelets, and the criteria for who can be a donor.]

If you already went through this four years ago, you still need to be re-tested (sorry); those who were disqualified for "temporary" reasons (because of your particular state at the time) are welcome to try, try again.

Once we have the list of qualified donors, we will start scheduling the platelet donations themselves; these will commence about a week before the transplant. The donor should plan on spending about two hours at the hospital. Please do not be late for the appointment.

If you are interested in being tested, please call D.G., who will be coordinating the effort; the hospital does not want more than five people showing up to be tested for the same patient on any one day.

Thank you all in advance for your willingness to do this for us.

Love, S.

October 28, 2004
One of the things I’m the most grateful for in my life is the religious community I’ve found here in Jerusalem. People here are warm, welcoming and caring. But ever since Timmi died, I’ve not been able to feel the same sense of belonging. While that “otherness” has faded somewhat, it will probably last for the rest of my life. In a sense, that feeling is another loss to mourn.

I’ve always tended to be somewhat different from most other people, and for most of my life didn’t really fit in with groups. So it was only after our family moved to Jerusalem and joined our synagogue and community nineteen years ago that I felt, for the first time in my life, truly “held” by a body of other people. My Kehilla (Hebrew for community) is a million things at once. We pray together in a way that everyone feels included. Our members truly like and respect each other, know how to have fun together, and have no patience for the kind of malicious gossip that so often characterizes groups of people who spend a lot of time together. Most of all, our community is the most thorough and effective support system I’ve ever seen.

I like to call the people who belong to our Kehilla “foul-weather friends.” When members are physically weak or emotionally overwhelmed after having a baby or due to seriously illness, people in the Kehilla take care of many of their needs. When a member loses a close relative, his house is packed with visitors every day of the seven-day mourning period. Members in financial difficulties know they can turn to the Kehilla’s charity fund for help. And people help each other find jobs, housing, babysitters... The list is almost endless.

When Timmi became ill, there was an outpouring of love and attention the likes of which I’d never seen before (and have not seen or heard of elsewhere since). Our community’s generosity – with time, with effort, with patience – was amazing. People cooked food for us almost every Shabbat for the full year of Timmi’s intensive chemo and first transplant, and after that whenever her hospitalization prevented us from preparing our family’s Shabbat meals by ourselves. The Kehilla made sure we were financially secure despite the very high additional expenses involved in a long-term illness and frequent hospitalizations. People counted it a privilege to be allowed to sit for two hours attached to a machine in order to give blood parts – one woman even wrote a short story about how donating platelets for Timmi was a deeply spiritual experience!

People practically begged us to allow them to help – the demand for things we needed others to do for us far outstripped the supply of things we could give them to do. Our close friend D.G. even took on herself the job of coordinating help for us, so that we wouldn’t have to look for volunteers to help us every time we needed it, or deal with the constant flow of call from people telling us how much they wanted to help.

All this, together with the deep concern with which everyone followed Timmi’s story (“How is she today? Has the treatment been hard on her? Is there anything I can do? She really is amazing!”) gave me an anchor in the terribly frightening and insecure periods of her first illness and of her relapse. I felt I wasn’t alone, that others were sharing at least a small part of what our family was going through.

So it was a shock and a surprise to me when being part of such a warm community stopped helping me – or felt like it stopped helping me – after Timmi’s death. I felt as if a thick wall had been put up between me and these other people, and that I'd never feel close to them again.

There were some people – even a few of those who’d most supported me emotionally while Timmi was still alive – who stopped asking how I am, or changed the subject when I started getting into anything personal. Most did ask, but didn’t have a clue how to talk to me. Very few people know how to listen sensitively to a grieving parent – how to speak about feelings when that’s what’s needed, and how to help them get their minds off their grief when that’s what would help more. But my problem went far deeper than that. Even if a friend listened empathetically when I spoke of Timmi, it didn’t do me any good. There was no relief of the kind I used to experience when I shared my feelings with someone close; it felt the same as talking to a wall. And while a joke or a story could sometimes distract me from the only subject that was really on my mind, the distraction only lasted as long as the conversation went on.

I was hurt, angry and frustrated. Why couldn’t anyone get it right? If a friend avoided the subject, I wondered how she could be so callous as to avoid asking how I am. If someone did ask, I said to myself, “What kind of stupid question is that? Isn’t it obvious how I am?!?” And what was wrong with me – why were love and empathy failing to do anything for me?

I understand now that there wasn’t any way people could get it right. There really was a wall between us – it was my child who had died. There could be no relief in sharing my feelings, because in the end feelings can only be truly shared with others who understand them. As long as there was hope for Timmi’s recovery, other people could relate (to some extent) to what we were going through. After all, most parents have been frightened for their children’s safety, and have exhausted themselves caring for very sick sons or daughters. But no one who hasn't lost a child can understand what it’s like. No one. Although I myself have gone through many very hard and traumatic experiences in my life, the fact is that nothing prepared me for losing Timmi. So could I expect anyone else to understand where I was and how I was feeling?

When I realized that the only thing that might ease this intense aloneness was to share my experiences with other bereaved parents, I joined a support group. Perhaps there I would regain the sense of togetherness I felt I’d lost in the Kehilla. But I found no relief there, either. (I’ll describe my experience with that group in my next post.)

As time has passed, things besides Timmi’s loss – work, the kids’ schooling, friendships – have gradually made their way back into my life. I again share with other people those things that we do have in common. I’m involved again in community issues and activities. I can even say that having gone through Timmi’s illness and death with the people of my community has ultimately strengthened my bond with them. They knew her, after all, many of them loved her, and she mattered to all of them. Even when they didn’t know how to help, the fact that they tried – and tried so hard – now means a great deal to me. If things were so hard for me even among people who cared so intensely, how much more would I have suffered if I'd really been alone?

Still, although I no longer feel an indestructible wall between me and others in my Kehilla, a curtain remains – one that sometimes seems almost transparent, but divides us nonetheless. And I think I’ll never again feel the sense of absolute belonging that I felt before Timmi’s death. Because my life is now divided into two very different parts – before I lost Timmi, and after. I’m no longer the person my community knew when I was a mother of seven children. And my community will never be able to truly know who I am, now that I'm the mother of six.

Empathy and Sympathy

October 15, 1999
Well, Timmi got out of the hospital last night after completing five days of chemo plus a spinal injection and bone marrow biopsy. The treatment is a relatively hard one, and she felt quite bad sometimes, although emotionally there were ups as well as downs. The side effects will continue for a while, and we expect that toward the end of next week or so she will return to the hospital with a fever. But there is good news - apparently we will be able to go to Paris before the transplant, after all (medical issues allowing, of course). So I hope to take her in early-mid November, for a week to ten days.

The week was, as all hospital weeks are, draining for me, and I'm glad she's out for now. There's nothing else new, so I'll see most (or at least some) of you in Shul.* Shabbat Shalom.

Love, S.

*Shul – Yiddish for synagogue

October 21, 2004
Our adult daughter Sheila was recently diagnosed as suffering from a chronic and painful inflammatory disease. My first reaction, as well as Don’s (after our concern for her, of course), has been “Can I really do this again?” Can I really stand helplessly by once again as my child suffers intense pain, with no clear end in sight? How will I be able to be there for her as she tries one treatment after another, with no guarantee that any will work – or when a treatment seems to work but its side effects are so overwhelming that it’s not clear the treatment is an improvement over the disease? Am I really strong enough for all this, or did our six-year journey with Timmi drain me completely of the kind of strength I’m going to need to support Sheila?

The answer I find when I look inside myself, incredibly enough, is that it seems that I do have that strength. And even more amazingly, it seems that its source is that very journey with Timmi.

During Timmi’s first round of cancer, I found it very hard to cope. My empathy for her often overwhelmed me, and I was sometimes unable to keep my perspective and help her see past her pain, anger, depression and other distress. She would sometimes refuse to take her medications, to allow the nurses to take blood, or otherwise to cooperate in her treatment. Sometimes, when she screamed at me that it wasn’t fair that she had to go through all this, I agreed with her in my heart so thoroughly that it paralyzed me. I’m ashamed to admit that there were times I identified so intensely with Timmi’s suffering that the job of calmly and assertively getting her to do what she had to do fell to Don or to the hospital staff. Eventually, a certain division of labor developed, with Don spending more time in the hospital and dealing with Timmi’s physical care at home, and me doing most the caring for the other six children’s physical and emotional needs.

This situation had to change during Timmi’s first bone marrow transplant and its aftermath. The treatments were so intensive, and the results of making a mistake so potentially dangerous, that I was forced to be as involved in Timmi’s physical care as Don was. We were both absolutely essential; I couldn’t allow myself the luxury of allowing my sympathy to sweep me away, or of allowing her suffering to incapacitate me. So I changed – grew up a bit more, in a way – and discovered that it’s possible for me to empathize deeply without drowning in sympathy.

When Timmi’s cancer returned three years later, I was in a different place entirely. I'd left my job as a lawyer to retrain as a mediator three months earlier, and I decided not to look for a regular job but to dedicate my time to Timmi’s and my other children’s care. (Not that anyone would have hired me knowing that I had a child with cancer, but that’s a different story.) I found myself capable of looking beyond Timmi's immediate suffering to the larger picture, and to concentrate on medium-term strategies to keep her spirits up. I helped her attend school whenever she possibly could, even when she feeling bad, because when she had something outside her body to occupy her, her discomfort was more bearable – and she could even enjoy life. We even planned and took a trip to Paris together!

Paradoxically, the less I identified with Timmi, the closer I became with her. Sometimes we would even have the same thought at the same moment. Once, as I was driving her to the hospital, a love song came on the radio. Just as the exact same idea popped into my head, she said (in just about the same words that I had said to myself), “Isn’t it strange, the notion that in the whole world there’s only one right woman for each man and one right man for each woman?” Often, she and I started singing the same song at the same time (we loved to sing in harmony together). I was truly in harmony with her, and we shared a deep spiritual bond that transcended the pain I felt at seeing her suffer. And this bond enabled me much of the time to know the right thing to say or do to relieve her distress. Of course, there were times when it was Don who had the better instincts; that’s why children are born of two parents and not one. But so many times it was my own instincts as a mother that helped her through.

So as painful as it is now to witness Sheila’s suffering, fear and uncertainty, I know that the best way to help her is also the best way to preserve and deepen our relationship. I’ll continue to do my best to give her all the “technical” help she needs – drive her where she neesds to go when she's not up to going alone, financially enable her to visit medical specialists not covered by our health plan, find out about the different alternatives available, and so on. I’ll continue to be there to listen when life seems overwhelming to her. But I’ll also help her see what Timmi taught me – that it’s possible to live, and love, even a physically difficult life – as long as those we love continue to share our lives.

Plans

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.

Love, S.

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.

Echoes and Shadows

October 1, 1999
After almost a week in the hospital, Timmi no longer has a fever and her blood counts are on their way back up. Although she still needs three more days of antibiotics (the fever was due to an attack of E Coli bacteria in her blood), she will come home for Shabbat/Simchat Torah* and will return to the hospital Saturday night. Very thankfully, her spirits have been pretty good, and quite stable, despite the fever, the herpes that attacked her face and the sores she has in her mouth and throat, which make eating painful.

Don and I are quite exhausted, and looking forward to the end of this round of hospitalization, although the week after next she will undergo a minor operation to insert a "Hickman" semi-permanent IV tube into a main artery in her chest (at the moments she has a "Pic-line", a tube inserted into an artery in her arm); that will require at least one night in the hospital. Then there's the next course of chemo, then the next fever, then the transplant.....

Well, at least she'll be home for Simchat Torah.

Love, S.

*Simchat Torah – the holiday immediately following the seven days of Sukkot (see my previous post).

October 7, 2004
We’ve just finished observing the last of the four holidays that fall during the first month of the Jewish calendar – Rosh Hashana (the New Year), Yom Kippur (the Day of Atonement), Sukkot (Tabernacles) and now, Simchat Torah. Timmi loved participating in holiday services. She came with us to synagogue for holidays whenever she was home and feeling well enough – sometimes in a wheelchair, and even though she sometimes needed us to take her home early. She especially loved to read from the Torah, and both had a beautiful voice and chanted absolutely accurately. As I sat in the synagogue today, I could physically feel the absence of that sweet voice, of that body sitting next to me. But I was also reminded that the echoes of Timmi’s voice, and the shadow of her presence in this world, continue and will continue to be heard and felt.

On Simchat Torah, we honor God’s gift of the Five Books of Moses to the Jewish people by taking out the Torah scrolls and dancing around them in seven cycles. We also both complete and begin anew the yearly cycle of reciting the Torah, reading the last two chapters of the Bible immediately followed by the first part of the Book of Genesis, the story of the Creation.

We end the Torah and begin it again on the same day because the cycle of Torah is never-ending; we can never truly finish it because there is always something new to learn from its words, no matter how many times we read them. But the symbolism goes further: we finish the Torah with a description of Moses’ death and follow it with the story of God’s creation of the world – and of life itself – because life and death are both part of the same cycle. Just as the seasons of the year follow each other in an endless cycle of birth, maturity, death and then new life, we’re meant to be born, to grow, and to bring children into the world to continue the cycle after we die. This is a comforting thought – in a sense, death is not really final, because it's inevitably followed by new life. But how can I take comfort when the cycle has been cut short, when my child will not outlive me and will not bring her own children into the world to carry on?

I was absorbed in these thoughts during today’s festivities when H., who had at one time been a close friend of Timmi’s, came up to me. “I’ve been looking all over for you,” she said. When I asked why, she said, “I’ve been thinking of you and Timmi a lot recently. I even dreamed about her on Sukkot, after remembering that it had been her birthday.” I was struck by envy. Why can’t I ever dream about Timmi? I would give so much to see her, even in a dream. Despite my envy, though, I wanted to hear everything H. had to say, so I encouraged her to go on. “She gave me so many things. Presents for my birthday, mishloah manot for my family every Purim...** I now carry with me everywhere a miniature scroll containing beautifully written birthday wishes that Timmi wrote out, illustrated and folded into a matchbox. I remember how every Purim she would come to our house with the mishloach manot, and my father would ask her whether she had seen our wood-burning stove. It was a game they had. Every year she would say no, and they would sit down together and he would show her how the stove works. ...I’d better stop here, I think I’m going to cry.” Her eyes filled with tears.

I was again overcome with envy. Earlier in the service, I had listened as a lovely young girl read the Creation story, just as Timmi had read it at her Bat Mitzvah ten years ago and again a year later on Simchat Torah. I had recited Yizkor, the prayer for remembering the departed. But my eyes had remained dry. Why was H. able to cry at her memories, while I was denied the release of tears at mine?

But I still needed to hear everything H. had to say. She went on. “Timmi gave me so much, not only material things but also spiritually. The way she spoke of God especially means a lot to me, to this day. I’m not religiously observant, but I’ll never forget a conversation we once had about the Creation, when we were only fourteen or fifteen. She said she didn’t think God had created the world like an engineer, pulling strings and twisting wires. The way she saw it, God’s very presence created us. We’re like God’s shadow. We don’t do anything to create a shadow, but the very fact of our being here brings it into the world – and our shadow wouldn’t exist without us. In the same way, as God’s shadows our very existence is dependent on His presence with us. And so the rules and rituals of Judaism were given not because God needs our worship but for us, to keep us close to Him.” H. cried again, we hugged, and she went off to find her mother.

Thinking about Timmi’s view of our presence in the world, I’m reminded of a phrase from the centerpiece of the Yom Kippur service, U’Netane Tokef, which compares a human being to “…a broken vessel, a dry harvest, a wilted bud, a passing shadow.” Only God is truly infinite; our own physical presence disappears when night comes and the life of the body ends. But as God’s shadows, as beings created in His image, we're not only bodies but also spiritual beings. And just as a person’s physical shadow will reappear in the morning as long as she is present in this world – so her spiritual presence lingers even after her physical death, as long as her words and deeds continue to reverberate in and through those who knew her.

So I no longer envy H., but am grateful. Her dreams of Timmi, her tears for her, mean that Timmi is still with us. Timmi has affected her life deeply, has helped make her the person she is today, and she will pass some of that on to her own children as the cycle of human life goes on.

I’ll never again have Timmi sitting next to me in synagogue, and I’ll never again hear her lovely voice chanting verses from the Torah during the service. But I can catch a glimpse of her spirit, and hear an echo of her voice, in the insights she shared with all of us, and in the love she left behind.

**Purim - the Feast of Esther, celebrating the deliverance of the Jews of the Persian Empire from threatened annihilation, on which Jews bring each other mishloach manot, or gifts of food.