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.
Saturday, October 30, 2004
Thursday, October 21, 2004
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.
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.
Thursday, October 14, 2004
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.
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.
Saturday, October 09, 2004
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.
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.
Saturday, October 02, 2004
Birthdays
September 26, 1999
Well, there goes Sukkot.* At midnight on Shabbat, Don had to take Timmi to the hospital because she developed a post-chemo fever. To remind you, these fevers are routine but no fun nonetheless. Don slept with her in the hospital Shabbat and last night, and we expect her to stay in the hospital for several days at least, because of her low blood counts. She will be released when her white blood count returns to a certain minimal level.
It was certainly no fun having to hospitalize her on Shabbat, but it was good that we didn't have to bring her on Thursday night, because then she would have missed the three (!) birthday parties that people gave for her, two of which were surprises - in the morning her Reiki** teacher gave her some beautiful presents and later some friends from school, led by A., brought her a cake that A. had baked. Then in the evening we had a family celebration in the Sukka. So at least she had a really great day before having to go off to the hospital.
Mo'adim l’Simcha!*** S.
*Sukkot - The seven-day holiday of Tabernacles
**Reiki - A kind of energy healing
***Mo’adim l’Simcha – Happy Holiday
October 3, 2004
Today would have been Timmi’s twenty-second birthday. Birthdays give us a chance to let those we love know how glad we are that they came into our world. I wish so hard that today I could know and love a 22-year-old Timmi, and to let her know in every way I can how much she means to me. I want so much to mark the day, to celebrate her life. But how can I celebrate when - although I'm thankful beyond words to have had the privilege of bearing, birthing and raising an incredible human being - she’s died and left behind an unfathomable void?
Timmi was born on the second day of Sukkot. On this holiday, Jews are commanded to build a Sukka, a temporary outdoor dwelling with only foliage for a roof, and live as much of our lives there as possible (for example, eating and (if safe) sleeping there) during the seven festive days. One of the ways of understanding this commandment is that a week of exposing ourselves to the mercy of the elements serves to remind us that there’s nothing in this world that is truly permanent, or absolutely to be depended on. The strongest house may be destroyed by war or natural disaster. The greatest riches may melt away overnight. No matter how hard we try to insure ourselves against loss, in the end we must face the fact of our ultimate vulnerability, our lack of true control. This realization humbles us, and we once again remember that ultimately it’s God – and not only ourselves - we must look to to provide for us and to thank for what we have.
Paradoxically (or so it seems), the holiday during which we’re most vulnerable is also our happiest; Sukkot is defined in our prayers as “the time of our joy.” For me, Timmi’s birthday reflects that paradox. All day long, I’m painfully aware of her absence. Where would she have been in her life on this birthday? Studying at University? Traveling or working in another country? Would she have met the love of her life by now? I can feel a gaping, almost physical hole in myself when I ask myself these things. But at the same time, I’m grateful. Yes, if I hadn’t brought Timmi into the world, I wouldn’t be haunted by her absence. If she’d never lived, she’d never have left me aching for her. But not for a moment would I give up having had her for those eighteen years.
Because I love, I’m vulnerable to the pain of loss. But if I had avoided family and children in order not to be exposed to the possibility of bereavement, my life would be far emptier than the void that Timmi left behind her. And so Timmi’s birthday is a time not only for me to wish desperately that she could be with me now, but also to celebrate the joy I had when she was with me in this temporary, unreliable world we call home.
May God continue to grant us children to love, the strength to take the risk of loving them, and – even if it's mixed with the pain of loss – thankfulness for the privilege of having had them in our lives.
Well, there goes Sukkot.* At midnight on Shabbat, Don had to take Timmi to the hospital because she developed a post-chemo fever. To remind you, these fevers are routine but no fun nonetheless. Don slept with her in the hospital Shabbat and last night, and we expect her to stay in the hospital for several days at least, because of her low blood counts. She will be released when her white blood count returns to a certain minimal level.
It was certainly no fun having to hospitalize her on Shabbat, but it was good that we didn't have to bring her on Thursday night, because then she would have missed the three (!) birthday parties that people gave for her, two of which were surprises - in the morning her Reiki** teacher gave her some beautiful presents and later some friends from school, led by A., brought her a cake that A. had baked. Then in the evening we had a family celebration in the Sukka. So at least she had a really great day before having to go off to the hospital.
Mo'adim l’Simcha!*** S.
*Sukkot - The seven-day holiday of Tabernacles
**Reiki - A kind of energy healing
***Mo’adim l’Simcha – Happy Holiday
October 3, 2004
Today would have been Timmi’s twenty-second birthday. Birthdays give us a chance to let those we love know how glad we are that they came into our world. I wish so hard that today I could know and love a 22-year-old Timmi, and to let her know in every way I can how much she means to me. I want so much to mark the day, to celebrate her life. But how can I celebrate when - although I'm thankful beyond words to have had the privilege of bearing, birthing and raising an incredible human being - she’s died and left behind an unfathomable void?
Timmi was born on the second day of Sukkot. On this holiday, Jews are commanded to build a Sukka, a temporary outdoor dwelling with only foliage for a roof, and live as much of our lives there as possible (for example, eating and (if safe) sleeping there) during the seven festive days. One of the ways of understanding this commandment is that a week of exposing ourselves to the mercy of the elements serves to remind us that there’s nothing in this world that is truly permanent, or absolutely to be depended on. The strongest house may be destroyed by war or natural disaster. The greatest riches may melt away overnight. No matter how hard we try to insure ourselves against loss, in the end we must face the fact of our ultimate vulnerability, our lack of true control. This realization humbles us, and we once again remember that ultimately it’s God – and not only ourselves - we must look to to provide for us and to thank for what we have.
Paradoxically (or so it seems), the holiday during which we’re most vulnerable is also our happiest; Sukkot is defined in our prayers as “the time of our joy.” For me, Timmi’s birthday reflects that paradox. All day long, I’m painfully aware of her absence. Where would she have been in her life on this birthday? Studying at University? Traveling or working in another country? Would she have met the love of her life by now? I can feel a gaping, almost physical hole in myself when I ask myself these things. But at the same time, I’m grateful. Yes, if I hadn’t brought Timmi into the world, I wouldn’t be haunted by her absence. If she’d never lived, she’d never have left me aching for her. But not for a moment would I give up having had her for those eighteen years.
Because I love, I’m vulnerable to the pain of loss. But if I had avoided family and children in order not to be exposed to the possibility of bereavement, my life would be far emptier than the void that Timmi left behind her. And so Timmi’s birthday is a time not only for me to wish desperately that she could be with me now, but also to celebrate the joy I had when she was with me in this temporary, unreliable world we call home.
May God continue to grant us children to love, the strength to take the risk of loving them, and – even if it's mixed with the pain of loss – thankfulness for the privilege of having had them in our lives.
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