Saturday, August 14, 2004

Routine

July 30, 1999
Hello, everybody. I hope to make this update a weekly feature, before Shabbat (hopefully not this short a time before Shabbat, usually).

Timmi had a relatively good week, considering that she is now in aggressive chemotherapy. We were in Day Care four times for chemo, plus twice she got blood due to her low hemoglobin. The hemoglobin problem makes her tired, but other than that there have been no discernable side effects, probably due to the naturalistic stuff that she has started taking (I may need a source to bring it for us from the US - anyone out there who can do it?). She and I went to Yakara's wedding on Tuesday night, and she held up fine and thoroughly enjoyed it. Her mood has also been quite upbeat this week, and she has been relatively active outside her time at the hospital. We all hope the routine, the lack of side effects and the good mood hold up.
As for me, despite the relative quiet the routine was somewhat taxing, and I am quite tired. Hopefully Shabbat plus Sunday with no hospital should help, although Sunday I have to get done a whole week's worth of errands. Oh well...

Love to you all.

August 13, 2004
It’s Friday, and our Shabbat preparations are finished. The food is cooked, the house and the kids are clean, and things are pretty quiet. Don rebuilt our workroom for most of the day, so my computer was out of commission and I’m only starting this a short time before the time comes to light the Sabbath candles. I’m hoping that his blog will become a new routine for me, as I hoped to do with the “Timmi updates” five years ago. At that time, of course, the updates took only a tiny part of the time I spent on Timmi and her illness. But as exhausting as that routine was, it's amazing how much I miss it today.

To anyone who isn’t experiencing it, taking care of a child with cancer seems a Herculean task. The long stays at the hospital, the constant running back and forth when she isn't hospitalized, the daily routine of coaxing her to take her gazillion different medications, the putting your life on hold for a year or more – all this seems extraordinarily daunting, if not impossible, to most people. And it certainly is exhausting. Many people don’t know just how tiring it is simply to sit at that bedside all day. Even on days when Timmi didn’t need me to run around the various floors of the hospital – to arrange medical matters or just to bring her some candy from the concession (when she was eating) – I’d leave the hospital feeling as if I’d been working on a chain gang all day. All the parents on the ward know that feeling – you keep your energy and spirits up all day in order to keep your daughter as cheerful as possible. Then, when the next “shift” (other parent or sibling) takes over, the energy drains out and you say to yourself, “Why am I so tired? I just sat around all day doing nothing!”

But now I know that this grinding routine served some very important functions for me.

First, it gave me something positive to do for Timmi. One of the worst aspects of having a seriously ill child is the helplessness – something truly terrible is happening to her and you can’t protect her, or make it better. All that running around allowed me to participate in the healing that took place (and to some degree it did take place, as she lived six years longer than she would have without treatment, three of those in remission).

Second, so long as I was taking care of Timmi it was clear as day that I was “choosing” the activity with the highest possible priority. Before that, my life as a full-time-plus working mother of seven children was a maze of conflicting demands. Which child most needed my attention at any given point? Who should come home early enough to pick up the youngest ones from day care – Don or myself? To what degree of self-fulfillment should I aspire – not only for myself, but as a role-model for my daughters? When a child has a life-threatening disease, these questions are pushed out of the picture. (Although the psychological questions related to Timmi and our other children were intensified – more about that, I think, in a later posting.)

Finally, of course, the routine kept my mind off the underlying ultimate fear – that treatment would fail and I would lose my daughter. Every new treatment, however experimental, allowed us to hope that this time we would really beat this thing. And because the future was impossible to divine or even plan for, I was able to a much greater degree than ever before to “live the moment” – to be where I was rather than reliving the past or anxious about the future, and to appreciate whatever good things that particular moment brought with it. Who would have thought that there are some advantages to having a child with cancer?

I only learned how important this routine was to me when it vanished overnight after Timmi died. Suddenly, I didn’t know what to do with myself. I had left my job three months before her relapse, and stopped looking for a new one when we got the diagnosis; it took me almost two years after her death to become functional enough to start working (half-time) again. The future seemed to stretch before me with only one organizing principle – I would be a bereaved parent for the rest of my life. In the present, there was an extraordinarily fine (so fine as to be practically non-existent) dividing line between feeling overwhelmed by what I had to do, and feeling that I had absolutely nothing to occupy me. The past, of course, almost didn’t bear contemplating.

With the medical routine, I lost a whole world in which I had been immersed, a framework that kept me stable and gave me a place. What was I now to do with all the knowledge that I had accumulated – the ins and outs of our HMO’s and the hospital’s bureaucracies, to whom to go with special requests, where and how to get what Timmi needed. And what about all the relationships I had formed – with the dedicated nurses on the ward and in Day Care, with her saint of a doctor? It sounds very strange to someone who hasn’t been there, but other parents have told me the same thing – I actually missed the hospital, as hard as it was to be there. (To this day, I sometimes find myself on the road to the hospital when I should have turned off the road in order to get where I’m going.)

In many ways, Don feels the same. He and my older daughters were the ones who would sleep with Timmi at the hospital, sometimes getting up at 4:30 to make it to his bus to work. Sometimes he would take a bus straight from work to the hospital, and miss seeing the other kids that day. After Timmi died, he told me once that when he passed the stop from which he would take the bus to the hospital, he remembered how he used to find the nights in the hospital so hard; but at that moment he would have given anything to be getting on that bus with a long hospital night ahead of him.

All this, of course, was really a metaphor for the real loss, the truly unbearable one.

Nowadays, I have a kind of half-routine. I get the two children who are still living at home up and out to school (during the school year), I say my morning prayers, eat breakfast and go to work. I work five hours (I tried to increase it to six, but discovered that I don’t yet have that kind of energy). But when I come home I often still don’t know what to do with myself. During the ten years since Timmi was first diagnosed, my children have grown up and the youngest is now thirteen; they are in school until late afternoon. I don’t have the heart for housework or taking care of family business unless it’s urgent. The family dinner has fallen by the wayside many evenings, as Aimee often stays in town with her friends after school (all the more so in the summer) and Don often comes home late from work; much of the time, I also can’t seem to scrape up the energy to cook.

The best time is Shabbat. Here, my routine has been set for me; I again know that what I am doing is what I am supposed to be doing at that particular time. This is the one of the things I love best about Judaism – this framework, this wealth of opportunities we have to know that we're doing what’s important at a particular moment. On Friday, I'm motivated by the approaching Sabbath and cook several dishes that my children love. Friday evening Don and I go to synagogue, and when we come home we have a long family dinner, for which three of our older daughters (the ones who live in Jerusalem) almost always join us. In the morning we again go to synagogue, talk to people at kiddush afterwards, and then come home for another (smaller) family meal. I then take a nap, and after I wake up I read, go for a walk with Don or talk with him or my children.

I am finishing this piece after Shabbat has ended; writing this blog is staving off my usual end-of Shabbat depression. What I have to look forward to this week is the same as any week – work, some interaction with my children, reading, being with Don. While Timmi was in treatment, that kind of “boring” week would have sounded like heaven. Now, like Don, I often feel that I would give anything to be spending my time and energy on the exhasuting routine of caring for her.

Love to you all - S.

2 comments:

Sarah said...

Wow, another beautiful and thought-provoking post.

Thank you for sharing this.

Sarah
www.chayyeisarah.blogspot.com

Seraphic said...

I came to your site via my husband's blog, Seraphic Secret. You write with such precision even about events of five years ago. We are still quite raw, but from what I read, the passage of time doesn't blur the memories. That is both good and bad. Unlike you, I have no pull toward the hospital. I kept a journal during my son's stay in the ICU (for six weeks) and I can't even bear to read it. I do indentify with the fatigue. I slept there most nights in a chair and the first time I slept in my own bed after weeks of this, I felt that the bed literally sucked me in. Caring for a sick child was a full time job, much more demanding than my real job as a psychologist. I never felt like I "was just sitting there." There was always something to monitor, someone to nudge, some need that I had to anticipate. Just walking the hallways was exhausting. Emotionally, you are also drained because you never knew who would be showing up to visit, what doctor would finally appear, and there was no privacy or control over your environment. I do feel like I've been numb for the past year, as I've said many times, I had to steel myself and almost distance myself from Ariel in order to keep strong, keep positive and act as a buffer between the medical staff and my son. It has taken me many months to shed this armour. As I told Robert, there is a saying that G-d only gives you the nisayon or trial that he knows you can bear. I've flipped that- my psyche can only titrate the pain to me a little at a time - as much as I can bear at that time. The enormity of losing Ariel is coming through slowly. If the realization came all at once I would dissolve. I would be obliterated.