Words of wisdom from a mom with cancer

In the last two months, three mothers of young children I know have died of cancer. I want to address how to talk to children about cancer, relying on the experience of one of those three mothers, Erin Hyman z”l.

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Just over two years ago, J. published a piece she wrote about helping her children cope with her cancer. I was heartbroken to learn that Erin died right before Rosh Hashanah this year. I hope that referring to her courageous words from two years ago can be counted, even if only in a small way, as part of the traditional condolence: “Yehi zichra baruch. May her memory be for a blessing.”

Like many mothers, and like the one Erin quoted from at a support group for mothers with breast cancer (BAYS: Bay Area Young Survivors, www.baysnet.org), the initial impulse may be to shield children from the devastating news and your feelings: “‘I came [to the meeting today] to cry… Because I haven’t let myself do that at home, not wanting my kids to see it.’” Another mom in the group didn’t let her children see her even once without a wig.

Like any parent of young children, Erin wrote, mothers in various phases of cancer treatment “must, of course, put our children’s welfare first.” Thus, the early stages of coping with the diagnosis and debating treatment options are best left with the adults. But once changes begin to occur, be it new daily schedules, extreme fatigue or hair loss, children need honest and straightforward explanations. These must, of course, be suited to each child’s age, developmental stage and temperament. Focus first on the immediate, visible consequences but do not shy away from answering kids’ questions about the future, even when the outcome is not known, and the possibilities terrifying.

Erin described better than I ever could how she handled these explanations.

“From the beginning, my husband and I spoke to our children frankly and directly about my cancer and about what they could expect to happen. My eldest, 8 and relentlessly inquisitive, asked questions constantly: ‘How did you get this? How long will you be in the hospital? Are there any other side effects of chemo that you haven’t told me about?’”

Her younger son, a kindergartner, was more concerned with the practical: “Who will pick me up from school?”

In addressing her children’s fears about the unknown outcome, Erin focused on “letting them know that they will be OK, but not everything will be.” She assured them that “they will be taken care of no matter what,” but acknowledged that “some things will never be the same.”

In the early stages of treatment, parents can stress how good the doctors are, how hard Mom is fighting the cancer, how much help family and friends are providing. Most importantly, tell each child how much you love her and appreciated what she is doing to cope and help. Emphasize that you want the children to continue to be active and enjoy school, play and friends. Actively give them permission to continue their lives as normally as possible. At the same time, let them know that you can see their intense feelings and provide them an attentive ear and comforting.

Erin observed, based on her own experience: “We shouldn’t underestimate our children’s capacity to discuss and process the hard stuff… If we don’t show them what we feel deeply — pain and grief included — we’re not showing them that there’s a way to move through these emotions and find your way forward.”

Talking is, of course, not the only way to encourage your children to share their feelings. Drawing, listening to sad music together, writing in a journal and participating in a kids’ support group are all good options, depending on each child’s age and temperament. Some kids will resist any direct discussion of the situation. Giving them physical outlets for both comfort and anger may be the best you can offer for a while.

Be sure to consult a professional if your child shows significant signs of distress such as: dramatic changes in eating and sleeping, weight loss, neglecting or failing schoolwork, regression (especially bed-wetting or daytime accidents), withdrawal or depressed attitude, aggression or tantrums.

Rachel Biale, MSW, is a Berkeley-based parenting consultant who has been working with parents of very young children for more than 25 years. Send questions through her Facebook page, Parenting Counseling by Rachel Biale, or via rachelbiale@gmail.com.

Rachel Biale