Monday, September 26, 2005

No News and Good News

August 17, 2000
There is not that much to report. Timmi returned to the hospital on Sunday for her release, and came home "finally" that evening; on Tuesday we were back in day care (routine). At home she has been sleeping a large part of the time, and when awake usually feels quite weak. She again can't keep much of anything down, which is a problem as she needs to take many pills every day (she gets her fluids and nutrition intravenously).

A positive take on all this is that Timmi's nausea, and perhaps her weakness as well, may very well be due to the poor present functioning of her liver, which in turn may be due to a certain level of GVH. And as we all know, GVH, while it can be extremely uncomfortable, is what we hope will put Timmi back into remission from her cancer. We don't know what is happening, but it is not unreasonable to believe and hope that she does have some GVH and that it may work against the cancer.

I have been in rather poor shape; I got some kind of respiratory virus last Friday morning (probably not coincidentally, the day after taking Timmi home), which then turned into asthma, and I am still not fully over it. I am of course very tired, and I must say that my stress level has been lower. I am starting to feel somewhat better, though, and hope to be back to "normal" within the next few days. The end of the summer break, if there is no school strike at its end, will also help.

Shabbat Shalom to all,

August 24, 2000
This week has been stable for Timmi, for better and for worse. For better, in that she still has no (or very little) pain despite continuing to reduce her dose of narcotic painkillers. She will continue taking the anti-inflammatory medicine that helped her so much when she was still hospitalized, as she does has quite a severe inflammation, probably in her joints, and possibly as a result of some level of GVH. Her blood tests are to a degree compatible with some GVH, so we are continuing to hope.

For worse, though, in that she still sleeps most of the time and feels quite awful when she is awake; she feels very weak and can hardly keep anything down. In addition, for the past few days she has been very depressed; nothing appeals to her, and she doesn't feel she has the strength to do anything - not even listen to music or watch a video. We hope that the depression is due to the reduction of her painkiller dosage, and not to something more long-term (though God knows she certainly has enough to be depressed about).

It is very painful to see the depression, as there is truly nothing we can do for her when she gets like this, other than be with her, and being with her does not, on the surface at least, seem to do much of anything (of course it would be much worse if she had no one to be with her). At least with physical pain, we can give her enough morphine to put her to sleep so she doesn't feel it. With depression, there is no such "easy" (ha!) way out. All we can do now is hope and pray it will be temporary.

I am for the most part feeling physically better than I did last week, though I am still quite exhausted. I hope within the next few days to be able to get back to fairly regular exercise.

Shabbat Shalom to all of you.


I just went out to the living room after sending out tonight's update, and found Timmi awake and in quite a good mood (though still down physically). This is the first time in several days that she is feeling this good emotionally, and I wanted to share it with you. Let's hope and pray it lasts!

September 26, 2005
It’s becoming harder to get myself to sit down and write this blog; you may have noticed that for some time I’ve been posting entries more seldom than I did at first. The reason is simple – it’s getting more difficult for me to reread, to process and to write about our life five years ago, as Timmi’s last chance came and went, and as she began her slow and gentle journey away from this world. It’s especially difficult for me to look back at that period through the prism of my present life, as I’ve been trying to do in this memoir and memorial. Comparing the two is sometimes just too painful.

Five years ago, I spent my time following the tiny day-to-day changes in Timmi’s condition and mood as one usually follows the news during a war or a hurricane; those changes were the most momentous events of Timmi’s life (and mine) at that time. If there were "big" things happening out there, we just weren't tuned in to them. In contrast, nowadays it seems as if every day brings news of very important life-events: my friends’ children are getting married and having babies; my own adult children are creating and deepening relationships with significant others and making their career choices. The young men and women of Timmi’s generation are now setting out on dynamic and exciting journeys that will shape their lives for decades to come. Part of me is joyful for and with them as they embark on their new paths. But part of me finds it very hard to watch these life-changes, knowing that Timmi will never experience them.

Tomorrow evening, I’ll attend the third wedding that’s taking place over a period of three weeks, of girls the age Timmi would be if she were alive today. The Shabbat before the most recent wedding, Talila, the young bride-to-be (the daughter of a very good friend) had a pre-wedding ceremony at my synagogue. I smiled with pleasure as Talila’s friends, relatives and then the bride herself were called up one after the other to the Torah. Afterwards, all of us threw candies, clapped, sang and danced around the Torah scroll. But as the women danced and sang
, I suddenly had a picture of Timmi as she would look today - as I’d seen her in my dream (see “Dreaming,” August 2005) - reading from the Torah and singing and dancing with her friends. Tears of sorrow for my beautiful, lost daughter, mixed with my tears of happiness for Talila, began to work their way up from the pit of my stomach, spread like a burning liquid through my chest, and spilled out my eyes. When Talila’s mother offered me the honor of carrying the Torah scroll back to the Holy Ark, I was unable to accept, because my legs were buckling under me. It took me more than an hour to stop trembling.

Talila's wedding, like all religious Jewish weddings, was joyful beyond words. Have all of you out there been to a real Jewish wedding? The bridegroom, and then the bride, are accompanied to the wedding canopy not only by their parents, but also by their young friends, who sing, dance and clap to the accompaniment of musical instruments (traditionally clarinets and other woodwinds). The guests also sing and clap along to some parts of the ceremony itself. At the ceremony’s conclusion, the groom breaks the traditional glass, as a symbol of mourning and memory of the destruction of ancient Jerusalem.

The music then starts up again and the crowd parts as the new couple leaves the canopy to spend a short time alone before rejoining their guests for the festive meal. As the couple returns, the music and dancing gain in momentum until things get almost wild. The women dance with the bride and around the bride, the men dance with the groom and around the groom, and both are raised above the crowd on chairs and “dance” with each other, each holding the end of a handkerchief. As the atmosphere grows in hilarity, the guests dance, sing and perform tricks to amuse the young couple. When everyone is exhausted, the meal is served, after which everyone gets up for yet more dancing.

It’s a mitzvah to do all one can to make the bride and groom happy at their wedding, and joining in the dancing is part of this. Talila and her groom were radiant, and their joy contagious. Also, I love to dance. So it was with great pleasure that I got up to join the festivities. Around Talila was an inner circle of girls bursting with youth and energy, leaping and dancing passionately; wider circles of older women danced, somewhat more sedately, around them. As I joined one of the outer circles, I couldn’t help but share in the general elation at the young couple's happiness.

But then I was struck once again by a fleeting vision of a 23-year-old Timmi, dancing and singing her heart out together with these girls. And then another vision, even more ephemeral, passed before me: that of Timmi as she might have danced at her own wedding.

After that, I danced like a split personality – one Sara happy and grateful to have the privilege of taking part here and now in this lovely wedding, and the other Sara mourning the wedding that will never be. I danced a crazy person’s dance: two steps to your right – joy, two steps to your left – grief; right foot – laugh; left foot – sob; right – smile; left – cry. But I kept dancing.

Someone asked me, at the pre-wedding Torah reading, whether I would have come if I’d known that I’d end up crying. I answered, yes, I would: I do not want to run away from the happiness that exists in this world – I want to embrace it. I do not want to spend my life overcome with grief for what will never be. And I'm sure that Timmi herself wouldn't have wanted me to stay away from joyful occasions; to the contrary, when I join in to contribute to the happiness of those who were or might have today been her friends, I feel that in a sense I'm dancing on her behalf. At the same time, I don't want to run away from my deep sadness for Timmi and all she might have become. To do so would mean, in a sense, running from Timmi herself.

So I will continue to attend weddings, birth ceremonies and other celebrations - those of my friends’ children, of my children’s friends, and of other young people who should have been Timmi's peers - and, God willing, of my living children. I will continue to do my best to add my joy to theirs at their good fortune.

But a Jewish groom always breaks a glass under his wedding canopy in order to remind himself and all present that there is no happiness in this world that is not mixed with some sorrow. I myself will never again need this reminder; because I'll never again have news of any kind of Timmi’s life, my gladness at others’ good news will forever be tinged with sadness, and with more than a drop of longing.


Alex Taylor said...

Difficult though your blog is to write, I'd like to let you know that I discovered it a couple of months ago and I've read every post with great interest. Your words have been very meaningful and special to read

In the mid-90's, I ran a computer bulletin board (kind of like a mini CompuServe, with about 1,200 customers) and one of our subscribers was a young man who had leukemia. Alan was a tremendous person. He was witty, smart, funny and very politically aware for someone so young. He became very active in our online community because much of his treatment left his immune system in a state that he wasn't allowed to be around people.

Alan's leukemia was hard to get into remission the first time. They tried all the standard chemotherapies and none worked. They eventually moved on to some very hard experimental treatments. The treatments had horrendous side effects, but finally did get him into remission.

When he was doing well, the members of our electronic community rejoiced. When he was doing poorly, we'd send emails and call, and make visits to the hospital when appropriate. Once, I even smuggled a laptop into his room in the hospital so he could take his turn playing an online game.

Eventually, the leukemia returned, and Alan passed away in his early 20s. It was 1997, and BBS systems were going the way of the dinosaur. Although the system was no longer able to pay its own bills, I kept the board online, because it was so important to him. A few months after he passed, I shut the system down for good, since the economics of running it had become impossible.

Reading your blog has reminded me very much of both the tremendously sad and wonderful times with Alan. It's stories like yours that keep the memories of children, loved ones and special friends alive, and I thank you for your blog.

Alan aka Avrum ben Avrum said...

Dear Sara,

I have said it about you previously but will gladly reiterate how phenomenonally remarkable you are! To be able to draw so abundantly from the wellspring of courage, butressed by such emunah and bitachon in the face of unimaginable adversity ... leaves me not only in awe of you personally but of all the b'not Yisroel who have borne our nation's calamities with the quiet dignity and resolve to continue living life.

The death of a child represents not only the tragic loss of that particular existential moment, the present tense of our child's life ... but the unalterable erasure of her/his future, of our futures as their parents denied the naches of witnessing our children taking their rightful places in the world; all of the 'what might have beens' forever ... never to be! It is an enormous and lamentable reality!!

My own daughter Kimberly echoed your words Sara ... while reflecting that she is already three years older than her big brother, that every enjoyment, every sweetness is at best a bitter sweetness ... that Ben was so young, as was Timmi, ... never to know the exhilaration of dancing at their own weddings, of the love of a spouse, of their first baby ...

Please forgive my interminable blatherings, but I was so moved by your account of the wedding ... I remain

Sincerely yours,

Alan D. Busch

torontopearl said...

Sara, it so happens that I wrote to you earlier tonight before I ever read this post...

"After that, I danced like a split personality – one Sara happy and grateful to have the privilege of taking part here and now in this lovely wedding, and the other Sara mourning the wedding that will never be. I danced a crazy person’s dance: two steps to your right – joy, two steps to your left – grief; right foot – laugh; left foot – sob; right – smile; left – cry. But I kept dancing."

How you've captured what might be called "the mourner's dance" -- it's no doubt a true depiction of what bereaved parents and bereaved siblings and bereaved spouses feel at a simcha.

As a writer and reader myself, I honestly think you should consider taking this particular (present-day) post, work it over just a bit, and submit it to a magazine -- not necessarily an exclusively Jewish magazine, but a women's magazine or just a general family magazine. It conveys so much and so many people could relate. Make it one of your "New Year's resolutions" if you must.

annabel lee said...

Dear Sara,
All of your words move me. I rarely comment here because I don't think there's anything I can write that would matter; all of my words, my own petty frustrations, pale in comparison to the grief you still suffer every day. But I read your blog faithfully, and you and your family are often in my thoughts and prayers. As we approach yet another New Year, I wish you a Shana Tova, a good and sweet year filled with comforting memories of the past, and a year in which you create beautiful new memories to carry forward into the future.
-annabel lee

cruisin-mom said...

Sara, I write this as I peek through my tears...what a gift, to be able to so eloquently describe your split feelings. It's exactly what so many feel while greivng, but do not allow themselves to express. I hope you realize how your writings will touch other people, and give them permission to know that it's okay to feel happy and sad at the same time. I'm glad you are able to know always, I so admire your honesty and willingness to share what's in your heart.