Saturday, August 27, 2005


August 4, 2000
We had another difficult week, although the situation started getting easier toward the end of the week. Timmi slept more or less for 36 hours from last Friday morning to Motzei Shabbat; this was quite hard on Don. At the beginning of the week she also slept through most days, which was in turn hard on me. However, I got a break on Wednesday when Don stayed with Timmi during the day, and came back Thursday to find her feeling considerably better. On Wednesday she stopped getting morphine continuously intravenously, and switched back to the pain patches that she had used before this whole thing started (she can still give herself bursts of IV morphine if she has a particular pain). This apparently was a very good thing, as Thursday morning I came and found her more awake than she had been for the last four weeks, in quite a good mood. She stayed awake for several hours, and was relatively active, talking to people and watching TV. Her pain was somewhat diminished, too, which of course is very good. She also no longer has fever.

Her stomach still hurts when she drinks, though, and she can't keep down more than a small amount of liquid at a time; eating is still out of the question. So she is still not able to leave the hospital.

Another reason for staying in the hospital is that the doctors want to continue testing her blood daily, in order to determine whether GVH is starting, as some blood tests seem to indicate that it may be. By Monday they will make a decision as to whether to leave things as they are, if it seems she is indeed starting GVH, or whether to do another course of (milder this time) chemotherapy and give her another portion of T-cells, if it seems there is no, or not enough, GVH. We certainly hope the GVH is starting, and that it will start doing its job soon.

So anyway, it seems she'll be in for at least another few days.

Shabbat Shalom to all.


August 24, 2005
A few nights ago, I saw Timmi in a dream for the first time since she died. In my dream, I was sitting in the living room, facing the window and concentrating on something (I believe it was a book), when I heard the door open. “Hi,” I called out without looking up. “Hi,” said an already not-so-familiar voice. I turned around, and there she was – not as she had looked as a healthy child or as an adolescent in remission, and not as she had looked when she was sick. She looked like the 23-year-old woman that she would have become had she lived.

I half-woke up at that point, and spent the rest of the night trying to reenter the dream, sometimes succeeding in recapturing the sight of this beautiful young lady who was my daughter. Although in my first dream Timmi was moving, taking a few steps into the house, each time I managed to drift back into light sleep what I saw was her standing there greeting me, a half-smile on her face, her image frozen like the last frame in a film that has been cut off abruptly.

Many bereaved parents describe waking up from dreams of their departed children with an overwhelming and painful sense of loss. For me it wasn’t like that at all. Of course, I felt terribly sad that seeing Timmi had only been a dream, and to be reminded that she is no longer present in the real world. But it also felt good to finally have seen her. Ever since she died, I've longed to see her again – even if only in a dream – and envied others whose children appeared to them in dreams while they slept or in visions while they were awake. I’ve always felt that seeing her even in a dream or a hallucination would be better than nothing.

In my only other dream of Timmi, I spoke to her from a public pay telephone. She was lost, or confused, and asked me to come get her, telling me she was at the platform of a particular subway station. In the dream, I ran and ran until I reached the station, entered it and found the platform. I arrived just in time to see the train pulling out of the station – and it was clear to me that Timmi was on that train. I’d missed her; I’d not even caught a glimpse of her face. The sadness and longing with which that dream filled me for days afterward is difficult to describe.

Don has also had only one dream in which he saw Timmi face to face. The doorbell rang, and when Don opened the door, Timmi entered without saying anything. As he moved toward her, he saw that her eyes were staring straight ahead, almost through him, without seeing him. He embraced her, and they both began to fall, at which point Don woke up. Like me, Don feels that he would rather have seen Timmi in his dream – even without her seeing him – than not to have had the dream at all.

Our children have also dreamt of Timmi, generally more often and in more detail than Don and I have. Each, of course, has her or his own special kind of dreams – and feelings about them. For example, Danny’s dreams of his sister are straightforward – he sees her at home or in some other familiar context, and it feels completely natural; to Danny, these are dreams like any other. Aimee’s dreams, on the other hand, have a magical but natural quality to them. The last time she had a Timmi-dream, Timmi came back to life for four days in honor of Aimee’s birthday; it seemed natural in the dream for this to happen – kind of, “Cool, this is a great present.” She awoke with the same mixture that Don and I felt of happiness to have seen her sister again, and pain that in real life she hadn’t gotten the gift she longs for.

Like Aimee, I want magic. But if you ask me what I desire more than anything, my answer wouldn’t be for Timmi to return to this world, or even to find that she’d never have left it. No, if a genie were to pop out of a bottle today and give me just one wish, I would ask to wake up tomorrow morning to find that all of it – the symptoms and diagnosis, the pain and the painkillers, the hospital and the treatments, the GVH and the non-GVH, the skeletal slenderness and the balloon-like bloating, the despair and the heroism, the waiting and the end – was the dream; that what my family and I long for – irrationally, impossibly, and unattainably, but with every fiber of our being – has been the true reality all along.

Sunday, August 14, 2005

Choosing Life, Choosing Faith

July 27, 2000
As I predicted in my last update, this past week has been a difficult one. Friday and Shabbat Timmi’s stomach pains got worse, and she developed a strong pain in a new place in her side; the morphine was not really working to control the pain. On Sunday the dose of her morphine was greatly increased, and a new drug, halidol, was added. This brought the pain more or less under control pretty quickly, although for a few days she was either sleeping from the morphine, or hurting. At times distraction by watching television allowed her to be awake and relatively pain-free, but seldom. A CT scan she did at the beginning of the week revealed that the pains, and probably also her fever, were (are) a result of an intestinal inflammation. Therefore, she may not eat and may drink only very small amounts. This, of course, adds to her discomfort.

In the last few days her blood counts rose and they are mostly back to a normal level, which has made her feel generally better. She still has a high fever, however, so will stay in the hospital for the time being.

Timmi still shows no signs of GVH, so she may need to receive more T-cell therapy in the near future. Shari's T-cells will be "harvested" again on Sunday and Monday, and frozen for possible future use, because Shari is traveling to the States on Tuesday for an undefined period.

Except for our three and a half day hiatus at home, we have now been in the hospital for three weeks. Luckily, the ward has, for the past week and a half, been able to arrange for Timmi to be in a room by herself, which is certainly vastly preferable to sharing the room with another family, however nice the people may be. This has made this particular hospitalization significantly more bearable, but still I return each evening feeling as if someone had squeezed all the juice out of me. Now I'll get a break, though, because Don stays in the hospital from Friday morning through Sunday morning, which of course exhausts him, but then I take over the days again and our older daughters take the nights (though soon, with Shari in the States as well as Sheila, that will consist of Lisa only, but she is more than willing to sleep in the hospital and even feels better sleeping there when Timmi is there).

I read an excellent book this week, which was recommended to me by Marion and which I found to be well written, well thought-out and in harmony with my theological, philosophical and psychological view of the world. It is called "When Bad Things Happen to Good People", by Harold S. Kushner, and I highly recommend it to anyone troubled by the inherently problematic nature of the combination of three beliefs/phenomena: the existence of an omnipotent God; the belief that God is good and just; and the unavoidable fact that innocent people suffer.

Shabbat Shalom to all of you, and may we all use Shabbat to recover from all of our various hard work and hardships.


August 14, 2005
I would like to warmly thank Deborah Weissman for her learned contribution to this post.

Today is Tisha B’Av, the ninth day of the Hebrew month of Av, when Jews mourn the destruction of our Temple in Jerusalem and our expulsion from our land, in 586 B.C.E and then again in 70 C.E. After each terrible loss, our people questioned whether we could go on, when God Himself seemed to have deserted us. But not only did we survive these traumatic events, but we went on to build new and flourishing communities in the Diaspora. And in our second exile, we adjusted to our new reality by creating a new basis for our faith, one that preserved Judaism and permitted it to continue to develop even in the absence of the Temple service that had been so central to Jewish worship.

After I lost Timmi, I too went through a period of deep despair. But as my people have done throughout the centuries, and as Timmi herself did in the face of indescribable suffering (see my previous post), I have chosen to make what I can of my new reality; in other words, I have chosen life. And although Timmi's death has made excruciatingly apparent to me that God does not always protect the innocent in this world, I have chosen faith.

Psalm 137 expresses beautifully the sense of absolute despair that gripped the Jewish people after we were exiled from our land by the Babylonians in the sixth century B.C.E. The Psalm’s first six verses are well known:

By the waters of Babylon we sat and wept, as we remembered Zion.
On the willows there we hung our harps.
For there our captors demanded of us songs, and our tormentors, mirth: “Sing to us a song of Zion!”
How shall we sing God’s song in a foreign land?
If I forget you, Jerusalem, may my right hand wither!
May my tongue cleave to the roof of my mouth, if I do not remember you, if I do not set Jerusalem above my highest joy!

How could the Children of Israel sing God’s song in a foreign land, where God seemed to have deserted us? And how could I, more than 2,500 years later, sing any song at all, after a loss so crushing and so incomprehensible as the loss of my daughter?

In the immediate aftermath of Timmi’s death, I went numb. I could feel neither joy nor sorrow; I could not even weep like Zion’s exiles. As the truth set in that I had lost her forever, I sank into a depression deeper than any I’ve ever experienced – deeper than any I might have thought possible. I lost the desire to do just about everything, and the ability to do anything other than what was strictly necessary to keep my family going. Many times I felt that I did not even want to go on living. I would never have deserted my children by ending my own life, but the thought of having been left behind in such a cruel world was unbearable. Had God, whom I had thought merciful, deserted me?

But God's command to choose life is too strong, and too central to Jewish consciousness, to allow despair to triumph forever. Through His prophet Jeremiah, God told the exiles in Babylon to rebuild their lives: “Build houses and live in them; plant gardens and eat of their fruits. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease” (Jeremiah 29:5-6). God did not wish His people to enter a state of perpetual mourning, which would have caused the Jews to wither away and, ultimately, to disappear from the face of the Earth.

Almost six hundred years later, when the second Temple was destroyed, the Jews who lived in the land of Israel faced a similar choice. They could go the way of the Zealots of Masada, who killed first their children and then themselves rather than accept the reality of loss. However, Rabbi Yoḥanan Ben Zakai, one of the greatest of the Mishnaic Sages, chose a different way. He gathered around him the other surviving religious scholars and set off to found Yavneh, a new community about 30 miles from Jerusalem. Together, these Sages began the process of creating new religious forms that would sustain the Jewish people throughout almost 2,000 years of diaspora – a Judaism not dependent on the existence of a Temple; a song to God which could indeed be sung in a foreign land.

Five years ago, Don and I began to watch helplessly as the end of our own private Temple – the home we had created by bringing seven beautiful children into this world – approached, as Timmi began to slip away from us. When the end came, our family was devastated. But as Jews have been doing for more than 25 centuries, we are now in the process of rebuilding our lives, and of trying to make them as meaningful as we can in the face of our trauma and tragedy. And I, like my ancestors before me, am doing my best to preserve my faith in God, and to continue to sing His song in a world that has become incomprehensible.

Where am I to find the strength to do this? Together with Harold Kushner, I believe that when bad things happen to good people, God provides us with a well of strength upon which we can draw to survive our losses and forge new lives for ourselves. This conception is reflected in the Babylonian Talmud: “Come and see how much the Holy One, Blessed Be He, loves Israel. For in every place to which they were dispersed, [His] Presence [remained] with them. They were dispersed to Egypt – the Presence was with them… They were dispersed to Babylon – the Presence was with them… And even when they will be redeemed in the future, the Presence… will return with them from the Diaspora” (Megillah 29A).

God did not desert the Children of Israel after we were exiled from our land, even though at first we felt to the core of our being that He had done so. To the contrary; God has provided us with the strength to survive despite vicious persecution, and with the inspiration to create vibrant communities, a vast body of scholarly literature, and a dynamic tradition that has enabled us to adapt to each new situation in which we’ve found ourselves.

And I, for myself, choose to believe that God has not deserted me, even though I cannot understand His world and even though I can seldom feel His presence directly. As Jews have done throughout the ages, I continue to believe that He will provide me with the strength and inspiration that I need to create a new and meaningful life for myself even in a cruel and staggeringly unjust world. And I believe that He will give me the love that I need to sustain me, as I continue to choose life.