January 8, 2000
Shavua Tov to everyone!
Last week was more difficult for Timmi than the week before, but the medical news, so far as the success of the transplant is concerned, is excellent - her white blood cell count went up so quickly that as of Friday she is no longer in isolation, although still hospitalized. In other words, it is quite clear that the transplant "took".
Physically, Timmi suffered much more than the week before, but still not nearly as much as during the first transplant. (She herself never loses sight of this and is quite grateful that things are not as bad as she had feared.) She had (still has, to some degree) mucositis, or damage by the chemical preparation for the transplant, in the mucous membranes of her throat and mouth, which was painful and made it very hard to swallow. In addition, she had various digestive tract problems, and often felt quite weak. All this was up and down, however - Thursday, for example, she felt really quite good and was very active, and then on Friday all her muscles started hurting and she felt dizzy, weak and nauseated. Then on Shabbat she felt better again. We need a lot of patience for this stuff.
Through all this, her mood has been remarkably good - serene is the word, I think. Whenever she felt relatively strong, she insisted on doing everything for herself, getting up and showering without assistance, for example. She also was as active as she could be – one day she helped Tehila E. (Sidra's wonderful daughter, who works at the hospital and has become good friends with Timmi) study for her psychometric exam, and another day gave Tehila a Reiki treatment! On Thursday we listened to jazz (especially Louis Armstrong - now, that would cheer anyone up!), and danced to it (Timmi danced sitting up in bed, with her upper body) and she read me two chapters from Khalil Gibran's The Prophet. She really seems to appreciate what there is to appreciate about life - one day she told Daniel how good it is to have people that love her. Altogether, she thinks and talks a great deal how love is really the most important thing in life. She certainly won't get an argument from me.
Now, we wait for the crucial news - whether and how much GVH there will be, and whether the treatment will be effective against the cancer. As I said, patience.
January 24, 2005
This evening, Don and I celebrated the Israeli holiday of Tu B’Shvat with several of our children. Originally set as the date by which we determine a tree’s age in order to know when its fruit is first permitted to us by Biblical law, this day has evolved in Israel into a celebration of the natural world. In accordance with the local custom, we ate fruits (both native to the Land of Israel and introduced here in modern times) and nuts, and sang songs about the land and its bounty.
Well, at first songs about the land itself, then songs containing any reference to any part of the land (including a couple of spirituals about the River Jordan). This reminded us of other songs we used to sing together when the children were young, and we enthusiastically sang those too. I then went a step further and put on a couple of records we used to play for the children when they were small, and we all joined in, singing and dancing along with the songs and listening raptly to the stories. Although the evening had started out with some strain between me and one of the older girls, the tension melted away as soon as we started singing together. Things got more raucous as the evening advanced, and we ended up having a truly wonderful time. Even better, for much of the evening it felt to me as if Timmi were also joining in.
It’s easy, with the myriad and sometimes conflicting obligations of modern living, to see fun as a luxury. Many of us do things just for the fun of it only when we’ve “earned” that right by taking care of all of our (supposedly) more serious and important business. But I’ve learned that fun is not a prize that we may allow ourselves to enjoy only if we’ve behaved well. Fun is definitely one of life’s necessities!
I think this is especially true of children who have disabilities or diseases that harm their quality of life. Fun takes them out of their bodies for a while, allows them a kind of breather from their troubles. Some people even hold that fun can give sick children more time. I don’t know if that’s true, but there’s no doubt that, at the very least, fun made Timmi’s too-short time in this world much happier.
Don and I spent a lot of time, energy and other resources arranging trips, outings, movies, concerts, plays – anything that Timmi might enjoy. Others helped as well, especially the dedicated people at Zichron Menachem, an organization founded by Chaim and Miri Ehrenthal in memory of their son Menachem who died of cancer after more than ten years of struggle. They run camps and a daytime center, persuade performers (well-known singers, magicians, you name it) to appear for the children, send volunteers into the hospitals to play with the children, throw parties in and outside of the hospital, and generally do everything in their power to show the kids a good time. Thanks to Miri and Chaim, Timmi rode horses and donkeys, drove mini-tractors, flew in a helicopter (several times!), water-skied in Eilat, and who knows what-all. With the other Zichron Menachem children, she visited the ancient city of Petra in Jordan. (That trip was jointly sponsored by Paul Newman and one of the princes of the Jordanian royal family; the prince also spent time with the children, pushing their wheelchairs and generally hanging with them.) Timmi would also have gone to Paris with Zichron Menachem, if she hadn’t had a terrible attack of pain just when they were due to leave, but I got to make that up to her (see “Paris”).
Through a different organization, Kav LeChaim (Lifeline), Timmi also attended Camp Simha (Happiness) in New York, where she had, by her own account, two of the best weeks of her life. A third organization, HaChaim (Life), took Timmi to London. She had quite a difficult time in London, as at the time she was taking very high doses of steroids, which badly affected both her body and her mood. But even so she brought home a few wonderful memories, most especially of the production of “The Lion King” that the children got to see on the London stage. I have several pictures of Timmi, her face and body completely bloated from the steroids, beaming as she stands arm in arm with each member of the cast. I feel at the same time like crying at the image of her distorted body, and laughing with her as she enjoys the musical and the backstage visit.
For quite a while after Timmi died, fun became off limits to our family. Our grief was just too strong. Timmi’s younger siblings often refused to join their friends in group activities. Like many surviving brothers and sisters, they felt that they weren’t entitled to have fun when their sister had so unfairly suffered and died. I also think that for all of us, for different periods of time, having fun felt like a betrayal. It took us a long time to understand that Timmi wouldn't have wanted us to remain joyless forever, and that enjoying life does not mean betraying her memory.
Nowadays, fun actually reminds me of Timmi. When she was small, she was one of the most lively, fun-loving children I’ve ever seen, dancing around the house, making up games with her friends, just generally sparkling like a little sprite. She was a wonderful mimic, and used to sing the songs and tell the stories we listened to this evening in all the voices on the records. After Timmi became ill, she preserved that fierce life-force, that desire to fully live her life and get the most out of it. However hard things got for her, there were always some moments when that life-force would break through and transport her out of her pain. People often ask themselves, “How can these children take it?” Fun is one of the answers. Timmi's ability to enjoy herself, even for a few minutes at a time, helped her to go on without succumbing to despair.
As time passes, and Timmi’s life gradually takes a greater place in my consciousness than do her suffering and death, my own capacity for enjoying life is gradually growing. And, in turn, as I allow myself more fun, my memories of Timmi become happier and happier. Timmi once expressed her fear that she was disappearing, that her personality was becoming nothing more than the cancer that was eating her from within. The last thing she would have wanted would have been for us to remember her only in her illness and death - that would mean the cancer had won. But the true Timmi didn’t at all disappear as she had feared. She is present every time we do something that calls to mind the joyful times we had together with her.
And so, as our family eats, sings and dances with gusto in celebration of God’s gift to humanity of the many and diverse forms of life that make up the natural world, we’re also celebrating that special and irreplaceable life that was Timmi’s.