Guiding My Child Through Cancer

For as long as I’ve been a rabbi, I’ve taught about ritual’s psychological soundness and capacity to heal, but it wasn’t until my daughter was diagnosed with Non-Hodgkin’s lymphoma — four days before her twelfth birthday — that these lessons became deeply personal.

It was a hellish year. We had to keep Sara going — physically and emotionally — and we had to make sure our two younger children, Adam and Daniel, survived emotionally too. Sara was in the hospital for the better part of four months, her worst times being when maximal doses of narcotics didn’t control her pain, when the physical isolation (because of compromised immunity) felt torturous to her, and when she feared what was coming next. Thankfully my parents were able to move in with us during the course of Sara’s treatment; some days I would beseech my father, a retired physician, “Tell me it can’t get worse.”

I took a formal leave from my synagogue to be with Sara night and day, while my husband Ed worked and tended to the boys. Of course, my husband and I had to keep going emotionally, too, managing anxiety and pain, and remembering to turn towards sources of nurturance. Sometimes our work was comprised entirely just of this: remembering to turn towards nurturance.

Sara became a bat mitzvah last summer and my parents celebrated their 50th wedding anniversary. It seems that we’ve all survived. Sara’s in remission, but of course cancer hangs over us; this we negotiate daily. With time, finally, to catch my breath, I wanted to reflect more precisely on how Judaism — and ritual — got us through. What follows are the coping methods that worked best for us. We couldn’t have made the journey without them — and some, indeed, still keep us going.

1

The Mi Shebeirach prayer, said in synagogue during the Torah service, is a prayer for healing, specifically for two kinds: “refuat ha-nefesh u’refuat haguf” — healing of the soul and of the body. There is no point in curing the body if, in the process, we destroy the soul. Judaism gives us clear and wise direction here. From this prayer I knew that I had to figure out what it meant to heal Sara’s “soul.”

Early on in her treatment, I started talking with her about the fact that it was the doctors’ job to cure her body, but it was my job as her mom to make sure that her soul stayed healthy. These were two different aspects of healing, I told her; you couldn’t have one without the other. I made sure that Sara remembered that she was so much more than cancer: that she had vital interests (playing the flute, swimming, running cross-country) and vital friends — a lot of girls! — and that soon she’d be able to go to school again, take the bus home, and text her friends at all hours of the night. We recounted all the people who loved her and why. I didn’t know how much of this idea — the two aspects of healing — she had really internalized until I heard from my friend that Sara had told her daughter, “The doctors take care of my body, but my mom takes care of my soul.”

2

We are commanded to say 100 blessings daily. Although most Jews don’t fulfill this tradition, it’s a worthy benchmark, and I kept it in mind as Sara and I started a nightly ritual. I would help her recall at least one blessing from each day to thank God for, recognizing and honoring that there are always blessings in our lives, even when things are horrible. On difficult days Sara might give thanks for a fruit smoothie and the ability to keep it down. On somewhat less horrible days, she might give thanks for her girlfriend Hannah or Annie or Shea visiting her at the hospital, or for seeing our dog Henry or her friend Stephanie on video Skype.

After our statements of gratitude, we would always pray for a better tomorrow, like having her favorite nurse back on duty soon, having a particular procedure go well, or having the courage to make it through something medically challenging. “Our God and God of our mothers and fathers,” I would say, “we are so grateful for ______. And we continue to pray for ______.” Sara would say, “Amen.”

I was conscious of never praying for something that couldn’t happen, like being released from the hospital early or being cured immediately; I didn’t want Sara to think her prayers were not answered. My daughter struggled to find a reason for her suffering, and these prayers recalibrated us and helped us stay oriented to hope.

We talked about how Judaism commands us to recognize and be thankful for what we have before we ask for more. Even now, after cancer, we continue this tradition of nightly mother-daughter prayer. If I’m busy with something else, Sara will come and get me. It continues to be a sacred time for the two of us, for what we’ve come through — and still go through — together.

3

We kept our gratitude for our community front and center. “Al tifrosh min ha-tzeebor” [“Don’t go it alone without community”] our tradition commands us in Ethics of the Fathers. Besides my parents, my husband’s and my siblings were constantly there for us, and our friends were, too; we knew they would not have allowed it to be otherwise. Generous people drove our boys to school, welcomed them into their homes, and brought us much-needed dinners. Technology was amazing as well, allowing us to feel the support of friends far away. Our synagogue “family” showed us what a kehilla kedosha [a holy community] can and should be, never questioning where I was needed first and rising to the challenge of covering my synagogue position in my absence.

Who knew how indescribably sacred others’ presence could feel? I wanted Sara to remember this.

4

Four rounds of chemotherapy loomed ahead of us, and we decided the count-down would feel more bearable if we could feel that others were counting with us. Judaism, indeed, teaches us to sanctify time. We decided on a quilt-making project — a quilt would comfort Sara and remind her of everyone’s love. Each time we checked into the hospital we logged on to a website and asked friends to send us squares of fabric specifically color-coded for each round of chemo.

For the first round, Sara asked for brown squares, to symbolize the loss of her beautiful brown hair. We got dozens of squares in the mail, differently patterned fabrics with the predominance of browns, some overlaid with embroidery or text or drawings. The next round was blue — for calm. Then purple for strength, and, finally, spring colors for the upcoming season and to celebrate rebirth. Swatch by swatch, we were flooded by hundreds of pieces of fabric. It felt glorious.

At the end of treatment, a professional quilt-maker who didn’t even know Sara, a neighbor of a family friend, gifted her with a king-size quilt. [You can see it at www. caringbridge.org/visit/saraflash.]

5

Sara and I talked about how to mark the end of her treatments. Each time she’d been admitted to the hospital, she’d gotten a wrist band, and she hadn’t cut off any of them. We decided to invite the friends who had visited her during her ordeal to come to a “cutting-off-of-the-hospital-bands” ceremony at our house; it was also a celebration of Sara’s health and a thank you to her friends for their kindnesses. Since our three children had always clamored for backyard blueberry bushes, we dug three big holes — it felt to me that each of our kids was a survivor of this period in their lives — for planting blueberry bushes.

When Sara’s friends got to Sara’s blueberry bush hole, they each cut off a hospital band and threw it in, lowered in the bush, and covered it all with soil. We prayed that as our plantings grew in strength and beauty, so too would Sara. When we go into the yard now, these bushes are there, reminders of time passing, of beauty coming from horror, of memory and of survival.

Needless to say, it feels good to see them thriving.

Rabbi Allison Flash lives in Newcastle, WA, with her husband and three children. She is the Assistant Director of Education at Temple Beth Am in Seattle.