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.