Saturday, December 31, 2005
Timmi's condition unfortunately worsened over the past week. On Sunday when I was there she was close enough to consciousness to nod/shake her head three times in answer to my questions. She immediately went back to hyperventilating, however, and so the staff increased her sedation somewhat.
On Monday morning, her lungs looked worse in the x-ray, seeming to indicate respiratory distress. Because she seemed to be struggling so much with the various kinds of light anesthesia that had been tried, and because there was no question of taking the tubes out with her lungs in worse condition, she was put into deep sedation with morphine. Then, later that day, the stuff hit the fan and she went into septic shock. Her body temperature, pulse and blood pressure all declined rapidly, and she was returned to fully machine-assisted respiration, sedated yet more deeply and again given a drip of a medicine to stabilize her blood pressure. In addition, she was started again on a wide range of antibiotics to combat the sepsis. Her condition was defined as somewhere between serious and critical.
Tuesday and Wednesday she was stable, with no improvement and no deterioration. Today (Thursday) there was a slight improvement, with her x-ray looking a little bit better, and with a lower dose of the blood pressure medicine. In addition, some of her breathing is again spontaneous, although that may be because she is breathing faster than the machine's pace. Still, even a small improvement is movement in the right direction.
We sure need a lot of patience. Thank you all for your prayers and love.
Shabbat Shalom to all, and may this Chanukah bring all of us a much-needed measure of light.
December 28, 2000
There is no change in Timmi's condition, nor has there been for a long time. Her lungs are not improving.
At this point it seems that what may be done for her, has already been done.
At this point, what happens is up to God.
Shabbat Shalom to all.
December 31, 2005: Seventh Night of Chanukah
Chanukah is called the “Festival of Lights.” The story of its miracle is well-known: More than 2,000 years ago, the Jews returned to their Temple, which the soldiers of Antioch’s Hellenistic empire had defiled during their war with the tiny Jewish nation’s freedom fighters. Seeking to relight the Menorah,* the priests found a small quantity of oil - enough to last only one day. But seven days would be needed to purify the additional oil that would keep the flame burning. Nevertheless, the priests lit the Menorah as soon as they found the oil. Perhaps in response to this act of deep faith, God caused that small jar of oil to burn miraculously for eight days, so that the Menorah’s perpetual flame did not go out again until the Romans destroyed the Temple two centuries later.
The Torah teaches us that light was God’s first creation. And light is indeed one of our universe's main foundations. The speed of light defines the relationship between the building blocks of the physical world, matter and energy. It is the sun’s light that makes life on Earth possible. And when we look up into the heavens, we see the billions and billions of stars that fill the universe, whose light reaches us over unimaginable stretches of time and space, and whose distance from our own world we measure in light-years.
Light also figures large in the language we use to speak of the spiritual realm. Jewish mystics, for example, have described the physical world as hiding “sparks” that broke away from the Divine unity during that first act of Creation. These sparks are now scattered throughout the material universe, but long to return to their original unity; a Jew’s purpose in life is to “repair" our shattered reality by restoring the sparks to their Source through mitzvot and Torah study. And people of all religions who have “returned” to life after a few seconds of clinical death universally describe their experience as being drawn toward a great light.
How can I even try to speak of these things - of the relationship between God and our souls, in this world and the next? Human language can never be equal to the task of describing the world of the spirit, and words can give us no more than a hint of the truths they seek to reveal. But as I said in my very first post, words are all I have to help me try to comprehend things that are really beyond human comprehension. And I feel that I must at least do my best to understand; so as poor as my language is, I'll try:
In my own private metaphor, God did not stop at creating the light that marked the beginning of time and space. Every time He fashions a human soul, He endows it with a new and unique spark. This tiny bit of light makes us who we are, and enables us to connect with our Creator during our journey through this life. And when we leave the material world, the sparks of our souls are reunited with the Divine light that emanates from God, expanding and intensifying that light as it beckons the human spirit to itself.
When parents bring a baby into the world, we become God’s partners in His renewed Creation. By giving us a child, He charges us with the duty and the incredible privilege of nurturing this new being and its own matchless spark of light. But we are not given to know when our child’s soul will be called back to its Source. That is entirely up to God. And so giving birth to a child, raising her, and loving her demands of us the same depth of faith that it took to light that day’s worth of oil in the Temple, that first Chanukah so many years ago.
Timmi’s flame lit up our lives not for eight days, eight months, or eight years only. God allowed it to shine on us for eighteen years, three months and two days.
May He grant me and my family the courage and strength to continue our own journey through this life with faith and with love, until our own sparks are joined with Timmi’s in their final reunion with the Divine Light.
*Menorah – the seven-branched candelabra that is meant to burn perpetually in the Temple.
Friday, December 23, 2005
Timmi's condition has not really changed for the past week. She is still under general anesthesia, and still attached to a respirator on breathing support. My understanding is that her X-rays, as well as an ultrasound, have showed no further improvement after the improvement of the first few days, but no deterioration either. She is still attached to a tube that drains the fluids that keep building up in her lungs (or would, were it not for the tube).
Several times the doctors have tried to wake Timmi in order to get her off the oxygen tube. In order to take the tube out ("extubate" her), it is important that she be fully awake and lucid, so that she can cooperate when told to breathe a certain way, cough etc. However, when she is disconnected from the anesthesia and starts to wake up (this can take several hours, by the way), she starts to hyperventilate, either from the panic at awakening to find herself full of tubes, some of which feel like they are choking her, or for some other reason I don't understand. When she hyperventilates, her oxygen level drops sharply, and because she doesn't respond when told (including by me) to try and take slow, deep breaths, she needs to be re-anesthetized in order to stabilize her breathing. So there it is - Catch 22. It would be good if there were a way to calm her without putting her to sleep, but even without narcotics or anesthesia, Timmi has recently been very sleepy, to the point where it has sometimes been impossible to wake her at least for several hours. So any tranquilizer or similar drug she gets puts her to sleep.
I have been there a few hours every day this week, talking to her, singing to her, putting earphones on her head with music, and talking to the medical staff in order to try and get a handle on what's happening. This whole business is, of course, extremely exhausting, although we do have the comfort of knowing that she is not suffering, at least for the moment. On the other hand, we are very worried about what things will be like when she does wake up - it may take a while to extubate even after she is awake, and Timmi's ability to suffer that kind of thing is by now extremely limited. Not to speak of the general condition to which she will "return", and the question, given her extremely damaged immune system, whether and when this will simply happen again.
As for what caused this to happen, all of the tests have so far still come back negative, so the working assumption is still that she has pneumonia from some kind of weird virus. It is now known, from tests, that the respiratory failure was not caused by the leukemia. Cold comfort; most likely the GVH, which apparently is keeping the cancer at bay, also damaged her immune system, leaving her vulnerable to this kind of infection.
Don was home this Shabbat (the plan was for him to sleep at the hospital only if she is truly awake by Shabbat). We requested that the staff call us if they manage to wake her during Shabbat, so that Don would be able to go there then, but they didn't call.
Shavua Tov to all.
December 22, 2005
I’ve always been relatively open; some would say too open. The updates I sent to my community and this blog itself are, I suppose, evidence of this. This is especially so in my relationships with people I care about. If some people are compulsive liars, I guess you could call me a compulsive truth-teller. Doing otherwise makes me feel somehow fake, as if I’m engaging the other person in a relationship under false pretenses. I know this isn’t rational, but it’s me.
When Timmi became ill, many of my beliefs and life-choices were challenged, not least among these my need to be open with those I love.
One day, I was having lunch with Timmi in the garden of a café in our neighborhood. It was the summer before Timmi’s relapse was diagnosed, and she was enjoying the last weeks of her official remission. Suddenly, she asked me, “If you knew I were going to die, would you tell me?”
I immediately went into mother’s alert mode; this was going to be a very crucial conversation. “What would you want me to do?” I asked her. “No, I wouldn’t want you to tell me,” she replied. “It would be too scary.”
Now, if I were going to die anytime soon, I would certainly want to know. I’d want to finish what I could, do my best to secure my children’s future, heal any of my relationships that need mending, and take my leave of those I love in a way that will prepare them, as far as possible, to deal with my death. But I’ve been permitted to live the most important part of my life – I’ve lived in partnership with the man I love, raised children, and had the opportunity to contribute at least part of my share to the world around me. Timmi, on the other hand, had not yet had the chance to do any of these things, and so it was natural that the thought of knowing that her turn would never come was overwhelming.
I later learned just how frightening Timmi found the idea of dying, when we found “Principally Poems,” the collection of her poems (in Hebrew) that she’d edited during the last year of her life and organized according to date. Shortly before her second transplant, she wrote the next-to-last poem in this collection:
You’ve imprisoned me in a cold dark room
And I can neither stand nor sit
And my lying is uneasy
Hard and restless
And I cry –
Let me out
Or let me stand,
Or rest at least, or take away the cold
And if you can’t,
Open up a little crack
So I’ll know –
The world still contains a bit of light.
That day in the Garden Café, I spoke with Timmi about how it would be to hear that she had only a short time left in this world, and how it would be not to be told. I promised to do whatever she decided, although I couldn't promise that she wouldn't be able to know from my face that there was something terribly wrong. As we spoke, Timmi realized very quickly that my promising not to bring her the bad news would be as problematic as my promising to tell her. If I promised to keep from her my own knowledge that she was going to die, she would never be able to feel secure – perhaps the doctors had told Don and me that there was no more hope, and we were keeping it from her? But again, the thought of us coming to her with such news was so very scary.
As we went back and forth on the subject, I was suddenly able to see it in a new light. I pointed out that if I were to “know” that Timmi was going to die, I would be aware of this only because it had become clear that all her medical options had been exhausted, and that she still had cancer. But from the very beginning we had always involved Timmi and kept her informed of all the details of her medical care, and so in such a case she would also be aware that there was nothing left to try – and the question whether I should tell her would be irrelevant. Timmi accepted this, understanding my point, and didn’t need to go any further into the issue.
I never did have to decide whether or not to bring Timmi the news she dreaded more than any other. This was not because she knew it anyway, as we had discussed over lunch in the garden, but because when she was sedated just before being rushed to intensive care, no one knew that she would never awaken from her sleep.
During the last months of Timmi’s life, I sometimes imagined how she might leave us. In my mind, I saw us all at home. I saw myself lying in bed together with Timmi as she drew her last breath in my arms, surrounded by her family’s love. I wanted so much to give her that last blessing. In the end, the scene was quite the opposite; Timmi spent her last days and minutes in a deep coma, attached to a million tubes in a hospital room in which her parents were not allowed to sleep with her. This was the scene I'd always feared the most. But as it turned out, it was a blessing after all.
Timmi never had to know that she was going to die – whether from our bringing her the news, from the faces of the people who loved her, or from her own understanding that there was nothing left to try that might keep her alive at least a bit longer. She never needed to face the “cold dark room” that had haunted her poem. Until the very end of her conscious life she was able, like any other girl her age, to laugh together with the people around her, to think about boys, and to dream about the life she wanted for herself when she grew up.
Timmi died blessed by the belief that she would live.
Thursday, December 15, 2005
Unfortunately, Timmi is not out of intensive care, as we had hoped. An attempt was made on Shabbat to wake her in order to remove her tubes, but her breathing was not and remains not good enough for that. Today a very large quantity of fluid was again drained from one of her lungs, and sent to every conceivable laboratory; so far all of the tests have continued to be negative. Professor Cividalli, her oncologist, says that "the picture is very strange". But Timmi's "picture" has been very strange for a very long time now, so we are more or less used to that.
Besides her lungs not really improving for several days, her kidney and liver functions have gotten somewhat worse. As a result, some of the medicines she had been receiving were discontinued. One improvement over last week, though, is that she is now no longer fully mechanically respirated - her breathing is spontaneous but "assisted" by the machine (40% oxygen, for the doctors out there).
Now that the "fuller" lung has been drained (actually there was still some fluid left but obviously much less than previously), there is a chance that tomorrow another attempt will be made to take out the tubes and wake her up; the doctor with whom I spoke said that is still the direction in which they hope to move.
If I may make a request, please do not ask me individually what is happening on the intensive care scene. I know how worried many of you are, but I promise that I will give updates when my strength and presence of mind will allow. If there is any significant improvement, I will certainly make an effort to let you know as soon as possible following the improvement.
Love to all,
December 15, 2005
In my last post, I wrote about how hope sustained me throughout Timmi’s illness, and how it did not disappear even when I “knew” that her death was imminent. The story of Timmi’s hope is even more remarkable.
Timmi decided to take an optimistic view of her illness from the very beginning. I remember vividly how, when we first got the diagnosis of cancer, Don and I entered her room, sat down on each side of her hospital bed and closed the curtains around us for privacy. Don told her that the doctors had found some cancerous cells in her bone marrow. At first she didn’t quite understand what that meant. A few cells? We explained further. When she understood that those few cells meant that she had the disease called cancer, she cried, but only a little. Then she said, “I am absolutely, one hundred percent sure that I am going to get out of this totally healthy. There’s no question in my mind.”
I was very grateful for Timmi’s fighting spirit, both because I believed that her attitude would make the illness emotionally easier for her, and because I’d read that “fighters” are more likely to survive cancer. I suppose I shouldn’t believe everything I read, but the fact is that believing that Timmi’s optimism would help increase her chances of getting better helped both of us cope with a totally new and incredibly overwhelming situation.
During the course of her illness, Timmi’s moods were even more unstable than a healthy adolescent’s. For one thing, she sometimes needed to take steroids, which prevented her from sleeping and magnified any emotion she was feeling at the moment. In addition, she often got very tired – and angry – at having to be a cancer patient rather than a "regular" kid. Sometimes she even despaired of ever having a normal life. Sometimes, like all teenagers, she thought about death, and there were certainly times when she feared it (see "Choosing Life," July 2005). But even in the hardest of times, her hope never deserted her completely.
Timmi even expressed to me, many times, her feeling of gratitude that things were not worse. “Look at the other children in the ward,” she said more than once. “Some are going blind from brain tumors, some are disfigured by growths on their faces, some are as small as kids five years younger. I just need to get through these treatments, and then I’ll be able to go back to a completely normal life. I’m really lucky.”
I was with Timmi for her last evening in the pediatric ward, before her turn for the worse required her doctors to put her into the sleep from which she never awakened. She was feeling quite bad that day and had little strength to concentrate on anything. I was trying to keep her amused by watching television with her and making funny comments, when the nurse came in and said there was a young man outside the room who was asking to speak with Timmi. I went out, sighing. Surely this would be yet another of the “do-gooders and well-wishers,” as Don calls them, who come regularly to visit the pediatric ward.
I should explain here that the last people Timmi ever wanted or needed around her in the hospital were visitors who were neither family nor close friends. The children’s ward at Hadassah Hospital in Jerusalem has a very large staff of medical, paramedical, educational and therapeutic professionals. Hadassah is a teaching hospital, so on any one day Timmi could receive visits from residents, interns, medical students, professors and doctors visiting from abroad, sometimes in large groups. There were the nurses and the technicians, who took blood, hooked her up to the IV and to any other necessary machines, and administered her medication. Then there were the psychiatrists, psychologists and social workers, as well as an array of music, art and other arts-based therapists, all of whom wanted especially to work with our talented daughter (or so we were informed by the head of pediatric psychiatry). There were also the volunteers from Zichron Menachem and other organizations dedicated to helping children with cancer and their families, who by arrangement with the hospital visited the children every day, designed and conducted activities for them, and played with them or gave out presents.
On top of all that came the well-intentioned do-gooders. The hospital management would sometimes bring around groups of donors, actual or potential, so that the philanthropists could see their dollars at work. (Once, when such a group came around, the nurses went nervously from room to room, asking that the children try not to cry or scream during the group’s visit, so they wouldn’t give the visitors a bad impression!) The ward even “hosted” groups of teenagers, who came around as part of their education or consciousness-raising or whatever. (I remember one group of American kids who came as one stop on their tour to Israel; they looked into the rooms and distributed cheap, silly toys that their tour guide - or “educator” or whatever - had apparently encouraged them to buy for the poor little patients.) Individual men and women would also come to the ward, wanting to read to Timmi or bringing her treats for Shabbat or for whatever holiday was being celebrated at that time of year.
Timmi valued her privacy very highly, and these visits often disturbed her, although she did her best to be polite. So Don and I learned to keep a sharp eye out for the well-wishers, and to steer them away from her bedside.
That evening, I went to look for the young man who had come to visit Timmi, prepared to politely but firmly ask him not to disturb her. I found a good-looking young man who looked about Timmi’s age. “Hello” he said, and introduced himself. (I wish I could remember his name; here I’ll call him Jonathan.) “I’m a first-year student at the medical school here.”
Guessing that I was puzzled why such a young person would be studying medicine, he added that he was enrolled in the Atuda, a pre-military program through which students are allowed to attend university and complete their degrees in professions such as engineering and medicine before entering military service, in return for committing themselves to remain in the IDF and work in their fields for a number of years after finishing their compulsory service.
“As part of my program, I’m required to volunteer for a certain number of hours every week,” he explained. “I’m doing my service right here in the pediatric ward, visiting the patients.” “I’ll ask my daughter if she’s up to having company,” I told him doubtfully. I went back in the room, expecting Timmi to ask me to tell Jonathan to go away, but when I explained the situation she surprised me by saying, “Sure, tell him to come in.”
The two of them discovered very quickly that they had a great deal in common. Timmi was 18; Jonathan was 19. She’d been a counselor in the Religious Scouts; he’d been a counselor in B’nai Akiva, another religious youth movement. They were similar in a more unusual way as well: both were not only religious, but at the same time held a politically and socially liberal world-view – a rare combination in Israel. They spoke of the music they liked to listen to, and generally about their interests and pursuits. Jonathan was incredibly sensitive to Timmi, and knew how to “go with the flow” while speaking with her. From time to time Timmi had to stop talking, because she suddenly felt weak or because something began to hurt. When that happened, Jonathan simply sat quietly and waited until Timmi was ready to begin speaking again. At each pause, I expected that Timmi would say that she didn’t feel well enough to go on, but she rallied every time and continued the conversation. I sat amazed, as Jonathan and Timmi went on talking for about an hour. It seemed like it had been forever since Timmi was able to concentrate on anything for such a long time, let alone make the effort to keep a conversation going when she was feeling so weak.
When Timmi really was too tired to go on, Jonathan took his leave. “What a sweetie,” she said to me, smiling, after he left. My heart skipped a beat. I was extremely happy, on the one hand, that she’d enjoyed the evening so much. But at the same time I couldn’t help feeling a deep sadness as I thought about what might have been, had Timmi and Jonathan met under different circumstances. Perhaps he would have been her b’shert, the one with whom God meant her to spend her life.
I wish I could remember every word of that beautiful conversation. I would write it down and keep it with Timmi’s photos, drawings, poems and stories. I can’t. But she said one sentence that remains crystal-clear in my memory, and that will always embody for me the incredible strength and endurance of her power to hope. There she sat in her hospital bed - after her strength had been steadily leaving her for weeks, if not months – surrounded by beeping machines and connected by a tube in her chest to her lifeline of nutrition, medications and blood parts; there she sat, speaking earnestly with Jonathan. After one of the many long pauses in the conversation, Timmi looked up at this lovely, gentle young man and smiled radiantly.
“I’m also thinking of becoming a doctor,” she said.
Saturday, December 10, 2005
I wish I had a better report to send you. Except for Sunday, which was a very good day for Timmi, she has been feeling quite horrible, both physically and mentally. For the last few days of last week we attributed her state to the fact that on Tuesday we removed the last narcotic patch (which in and of itself is actually good news), and believed she was experiencing some of the symptoms of withdrawal. This seemed to be confirmed on Sunday, when on the fifth day after the removal of the patch she felt significantly better, even ate a small amount and kept the food down. But Monday she felt terrible again, and it has not really let up since. She is quite weak, sometimes needing to get around even in the house with a wheelchair, dozes off during the day but can't really sleep at night (even if she hasn't slept much the previous day), vomits two or three times a day (including at night, which is a new phenomenon), experiences various pains in various parts of her body and finds it hard to concentrate on doing anything. This situation, not surprisingly, depresses her and sometimes she feels quite desperate about it. Such a long time and no end in sight.
It has been suggested that at least some of Timmi's symptoms may be explained by neurological problems, and next week we will discuss the possibility of further tests next week, with her oncologist. She has been tested neurologically several times in the relatively recent past, but there may be more extensive tests that may be done.
It is terribly frustrating to Don and me not to be able to do more for her. Sometimes it feels to me, at least, as if I can't do anything at all for her, other than "maintenance" - giving her her medications, taking her to the hospital, connecting her to her TPN (the intravenous nutrition). I know how frustrated many of you are by your inability to help us - so we can all understand each other. This, of course, is of some help to me but none to Timmi.
I hope my next update will be more upbeat. In the meantime, Shabbat Shalom.
December 8, 2000
Timmi is now in intensive care, and has been for the past two and a half days. She entered the hospital Motzei Shabbat because of extremely frequent vomiting and a low fever. Her condition did not particularly improve on Sunday or Monday. Then, Monday night, her fever shot up, her blood pressure dropped and she started having serious trouble breathing. Tuesday morning a very large amount of fluid was drained from one of her lungs, and by the middle of the day she was in intensive care for respiratory failure, as even with an oxygen mask she was not getting enough oxygen.
Since mid-day Tuesday, she has been on a respirator, and under general anesthesia. (At least she is not suffering.) The X-ray of her lungs looked a bit better yesterday than it did Tuesday, and a bit better today than yesterday. Likewise, she has needed progressively less oxygen yesterday and today. On the other hand, her blood pressure is still not stable without a constant drip of adrenaline, although she is now getting a somewhat lower dose than she got at the beginning.
She will remain anesthetized and respirated at least until her blood pressure stabilizes, and also until her lungs look good enough in an X-ray to take out the oxygen tube. Once that happens, the tubes will be removed and she will be allowed to wake up.
Although all the cultures (and, thankfully, the biopsies) were negative, the most likely explanation for the respiratory failure is pneumonia of some kind; it looks viral. Although most of us usually sigh with relief when we hear an infection is "only" viral, in this case it is more worrying than if it were bacterial. Bacteria can be taken care of with antibiotics; viruses can not. And we have learned from a recent test that Timmi has just about no immune system, so viruses are scary. The fact is, though, that the overall picture has improved a bit from day to day, so things are not nearly as scary as they could be.
Her condition is defined as serious but stable.
Don will spend Shabbat in the hospital; I have been going every day for a few hours to speak to her and play music for her through earphones, in the hope that something is registering and that these things will help her. It's hard to be there for more than those few hours, though - intensive care is certainly very different from the pediatric, and even the bone marrow transplant, wards. I'm also not permitted to be there when any medical procedures are being performed. So this is all quite new to me.
Shabbat Shalom to all of you.
December 8, 2000
As I know my last message was very worrying, I wanted to let you all know that Timmi's blood pressure has now been stable for several hours without medication. As a result, the dose of morphine that she is receiving as anesthesia is being slowly reduced, and the doctors hope to be able to wake her and take all the tubes out within the next 24 to 36 hours. So maybe she'll be out of intensive care by Sunday; that would be very good indeed.
Thank you to everyone who replied with love and support to yesterday's message. I truly appreciate it.
Love and Shabbat Shalom to you all,
December 8, 2005
All human beings know what it is to hope, and many know what it is to “hope against hope.” But I can say now that I did not understand just how stubborn hope can be until Timmi’s journey through illness and, ultimately, out of this life. I discovered that, amazingly, hope has a wayof leaving some of itself behind even when it seems to have deserted us for good.
When Timmi first became ill, it was easy to hope. The doctors spoke of a 90 percent recovery rate for childhood leukemia, there was no reason to think Timmi would be on the wrong side of those statistics. And we had spent six months trying unsuccessfully to diagnose Timmi’s ailment. When she was finally hospitalized for tests, the medical staff was so puzzled by her combination of symptoms that I became convinced that she was suffering from a new and deadly virus without a cure, something like AIDS. So even though the diagnosis that every parent dreads - leukemia - naturally planted its seed of fear, in a bizarre way it was a relief to hear that Timmi was ill with a well-known, potentially curable disease.
My near-complete optimism lasted through Timmi’s first series of treatments and her first bone marrow transplant. When the initial side-effects of the transplant had subsided, and Timmi seemed well on her way to full health, it felt almost like starting a new life - as if Timmi were once again being born. Then came the first GVH, reminding us that things weren’t quite over. The GVH dried her itching skin until it cracked. To prevent the GVH from getting out of hand, doctors prescribed steroids, which bloated her and kept her from sleeping. The medication got rid of the rash, but also suppressed the GVH, so she had to stop treatment, which brought back the rash. And so on in a seemingly endless cycle. But throughout this period I still felt very hopeful, because after all GVH would fight the cancer; just so long as it didn’t get too strong, it was really a good thing. The medical problems that she experienced for the next couple of years made her life and ours difficult, but at least we had her with us – and that was the important thing.
Things were very different the second time around. Now, the statistics were unforgiving. No more 90 percent - or even 10 percent - cure rates; we were told that no one had so far survived a relapse of cancer after a bone marrow transplant. Still, the doctors told us, almost every day there were new advances, promising experimental treatments. I guess that was when we entered our Fool’s Paradise (see “Knowing and Not Knowing,” September 2005), when we latched on to every hopeful word we heard from Timmi's doctors, willfully pushing things we knew out of our consciousness.
As treatment after treatment failed to get real results, I could feel my optimism shrinking together with Timmi’s options. But the morning Timmi went into intensive care, I was amazed to see just how much of my hope still remained. When I came back to the pediatric ward to get Timmi’s things after accompanying her to the ICU, one of the nurses came up to me and asked how I was doing.
“I’m fine,” I said. “I understand that Timmi’s in the ICU because she needs to be on a respirator for a few days until we get her lung infection cleared up. It’s good she’s being sedated, because it would be terrible for her to be awake while she's on a respirator.”
“It’s really good you’re taking it that way,” the nurse said.
“What do you mean?”
“Well, most parents get very upset when their child is taken to intensive care, because of what that so often means.”
What that means? I asked myself. Oh my God, is she saying -
“No, I don't think about it that way,” I said to the nurse, and went out the door.
I looked back at the other parents in the room, and I could tell they knew exactly what the nurse had meant. I saw in their eyes that watching the staff wheel Timmi out of the room to an unknown fate had frightened them deeply, for Timmi and for their own children.
This is just a regular medical procedure, I repeated to myself.
During the month Timmi spent in the ICU, I fiercely held on to my optimism as time went on and the doctors tried day after day to bring her out of sedation. I came every day to talk and sing to her. I told her that we all loved her, and how happy we would be to be able to speak with her again when this was over. Then, after a bit under three weeks, the doctors decided that there was no use in trying, that Timmi's lung infection was incurable and that she would never be able to safely come out of sedation. When they told us of their decision, and that it was now a matter of a few weeks at most, I thought my hope was used up. During that last week and a half, I spent my visits to the ICU staring at the monitor that displayed her vital signs. At home, I spoke with the children and tried to helped them prepare for what was coming. There was no longer any doubt, no longer any hope. Or so I thought.
But when that phone call came, the shock was so great that I felt as if the police had called to tell me that Timmi had been killed in an accident. All those years of knowing that Timmi’s death was possible, then probable, then inevitable – none of it had prepared me for the moment my worst nightmare came true.
It was only then that I realized that hope had never really left me, that it had lived on until the very moment my daughter was finally gone; Timmi and my hope for her had died together. Only with its loss was I able to see that – incredibly – it had been present all along, sustaining me through times I would not wish on any other human being. The Greeks had it right - when Pandora opened the box and let loose all the catastrophes and tragedies that plague this world, she also freed Hope, the gift that enables us to go on in the face of the seemingly unfaceable. Without it, I could not have survived the knowledge that I was going to lose my child.
Even more amazing than the stubbornness of my own hope was the tenacity of Timmi’s. I’ll write about that in my next post.
Thursday, December 01, 2005
There is not much new to report this week. Timmi continues to sleep alot of the time and to feel very weak when awake. At the suggestion of her doctor, we have been trying to find things that she can eat, with a view to reducing and eventually replacing the TPN (liquid nutrition) that she gets intravenously, but with limited success. Usually eating makes her feel awful, so though she tries, there is only so much she can make herself eat.
We did find a lovely woman to be with Timmi twice a week, a very warm person with whom Timmi feels quite comfortable. So now I am able to schedule work days with much more confidence, which makes a huge psychological and moderate financial difference to me.
November 17, 2000
The past week has been pretty much the same as previous ones, with Timmi feeling very weak and spending the greater part of her time sleeping or in bed, and not able to get around much without the help of a wheelchair. An exception was Tuesday, when after the hospital we went to a restaurant, where Timmi actually ate a small amount of food, enjoyed it and did not feel horrible afterwards. We then saw a movie together ("Chicken Run"). When we came home she stayed up with the rest of us and we had a nice family evening. Yesterday she reverted to the previous pattern, and today was worse. Still, days like Tuesday keep me going.
I would like to add that there is no need to worry if an update does not come before Shabbat on any particular week. It does not mean that something terrible has happened, just - most likely - that I was very busy and/or tired that Thursday and Friday, and that there was little new to report.
November 24, 2000
Another week much the same as the last. Up days, down days, on days, off days. So far, though, Timora had two "good" days this week – Monday and Wednesday - during which she was awake for most of the day, and had the strength to participate to some degree in life. Yesterday (Wednesday) was particularly good - she spent the morning and noon hours enjoying the company of her companion, who seems even nicer the more we get to know her. We even got out to take care of her business at the bank. Earlier this week she also got to the Education Ministry with Daniel and registered for the Winter term matriculation exam in Civics, and when she has the strength is studying for the exam. After each of the good days, though, Timora has so far always had a particularly sleepy and weak day.
I myself have been sick the last few days (some kind of virus), and again had some insight into what life is like for Timora. If I get so frustrated by a couple of days of inability to get anything done or even concentrate on reading, how must it feel for her, who every day has to contend with some degree - sometimes an extreme degree - of physical weakness, and at least some - sometimes a lot of - pain, not to speak of imbalances that effect her mood and her ability to cope! It is impossible to always be in touch with this feeling in such a deep way, though - if I were, I would be unable to function. So as always, as I get better I will have to return to tempering my empathy with a certain dose of repression.
Shabbat Shalom to all.
December 1, 2005
Have you ever noticed that when you ask a mother how she is, nine times out of ten she’ll answer by telling you how her children are doing? While Timmi was ill, of course, my world naturally revolved around her and caring for her. When things were going relatively well for her, I was happy; when things were hard for her, they were hard for me. My identification with Timmi reached a point where I experienced my own (minor) illnesses by comparing them to hers. But even now, after Timmi is gone, I find that my emotional highs and lows correspond to a very impressive degree with the ups and downs of my children’s lives, and with how much “quality time” I get to spend with them.
This past week, for example, has been a very good one for me. This is partly because my field internship is going so well, as I'm fulfilling a dream at least fifteen years long and learning to become a psychotherapist. (One of the advantages of being 50 years old is that today I know just what I want to do, what I like doing and what I'm good at doing.) The course is interesting, I’ve started to see clients and I’m getting very helpful feedback from my supervisor. But if you asked me what was the high point of my day on Monday, for example, I wouldn’t answer that I'd had an excellent interview with a client, or that I'd finished the writing I needed to do for my studies – although both gave me a deep sense of satisfaction. No, the best part of Monday was going to see a movie (“Corpse Bride”) with Elaine and Danny – even though the movie was pretty silly – and then sitting and eating dessert with them at the mall’s fast food court – even though as a general rule I detest both fast food and malls. Just being with the kids was enough.
Another high point this week was Friday evening, when Sheila came to Shabbat dinner with the young man she’s seeing (whose name, unbelievably enough, is Tim). Tim, like our other adult daughters’ partners, fits right into our family, and we all feel very comfortable with one another. So we spent the evening talking and laughing, discussing a wide range of serious and not-so-serious subjects. The happy presence of so many of my children – and the reminder that all of my adult children are now, blessedly, involved in serious relationships with lovely partners – filled me with so much joy that I completely forgot how tired I was after working very hard at my fieldwork and in my home all week.
One of the many advantages of having a large number of children is that there's always at least one whose life is going well. When I’m feeling low, whether because I’m worried about one (or more) of my children or for any other reason, I can always remember that there's someone in the family for whom life is good at that moment. This thought gives me an instant lift – almost like popping a pill, but with no side effects. And that lift becomes a real high when we also spend happy time together. (Interesting thought – am I addicted to my children?).
There’s a downside to my supersensitivity to my children’s emotional state – especially, of course, to their pain. I still find it hard sometimes to distinguish between their troubles and mine, and must struggle not to identify with them so closely that I make their pain my own. Not only does this kind of over-identification make me less able to help with my children's problems, but it is not healthy in any relationship, particularly between a parent and a child. Though I’ve gotten better at respecting this kind of boundary between myself and my family, it will probably remain an issue for me for the rest of my life.
Still and all, when life seems overwhelming – and life really can sometimes feel like nothing but a series of painful losses – it’s days sharing love and fun with my children, as I did with Timmi that Tuesday five years ago and as I continue to do with the others whenever I possibly can, that keep me going.