Monday, October 25, 2010

navigating a rough road

“You have a heart on your shirt Mommy?” My two-and-a-half-year-old son, Joshua, asked me the other day. I looked down at my “I hate cancer” t-shirt.

“Actually, it’s a heart turned upside-down. My shirt says, ‘I don’t like cancer.’” And because I couldn’t bear to hear him ask, “What’s cancer mommy?” I quickly added,

“Cancer is a sickness that people get sometimes.” This seemed to satisfy him, so I successfully bought another day to think about how on earth I would talk to my child about this incredibly difficult topic.

It is a hard subject in general, further fraught by my own personal history. I was diagnosed with thyroid cancer when I was twenty-five. It being “the best kind of cancer to have,” I consider myself pretty lucky. I even dodged any intense or invasive treatment—the surgery was minor and radioactive iodine sounds much worse than it actually is. But I’m still working through feelings from this time in my life, even though it was thirteen years ago now. Feeling like my cancer, “wasn’t that bad,” or “doesn’t really count,” are among the nuances. It’s oh-so-much more than survivor’s guilt.

When I was given a clean bill of health, I still felt scared and unwell; nervous about the future. I’m no prophet. I can’t foresee what is to come any better than you can. Death is something that is true and hard about life, it just wasn’t something I had previously thought much about. Someone recommended I read the book Dancing in Limbo, which I did. It helped me make friends with the unknown and define an outlook that was more hopeful. Even though my prognosis was fantastic, (it is the best kind of cancer, after all) I was still rocked by the truth that my body had housed and grown these rogue cells—it was terrifying.

Also, there are additional stories Joshua will eventually need to hear. Both of his paternal grandparents died of cancer. And they were young. My husband’s father passed away at fifty-eight, about three years before Joshua was born. Grandma Sue died just as Josh was starting to toddle around. She was sixty-two. My grandfather, for whom my son is named, died of cancer in his early seventies. I know that I am not alone in having so much experience with this previously unmentionable disease. We’ve come a long way since cancer was whispered about behind closed doors. The stigma has definitely lessened, but I still struggle. I’m sure others do too.

Figuring out how to talk about cancer, with its inextricable connection to death, is a hard nut to crack. I have trouble processing and understanding the realities of it all—death still being a pretty taboo topic in our culture. Clearly, I don’t have all the answers about how to navigate these tough conversations. But I do have some suggestions and resources to offer:

Talk to another grown-up. Talking things through with someone before talking to your child can only be beneficial. My partner and I will need to revisit the pain of the loss of his parents so we can be as clear as possible with our son. At one and five years out, it is still pretty fresh in our hearts and minds.

Don’t hide it. Kids will think even worse things are going on if they are not informed. It’s okay to be honest about how you feel about it, for example, “I feel very sad about Grandpa’s death, even though it happened a long time ago, so it’s hard for me to talk about.” I think acknowledging your own hesitation can go a long way toward normalizing this complex issue.

Be straightforward and age appropriate. Share the facts and your feelings—for a four-year-old you might say, “Aunt Trudy has a sickness that can’t be caught like a cold or cough, she might be really tired for several months and her hair is going to fall out too. I’m worried about her, but I think she’s going to be okay.”

• Honor the tension between, “I don’t know,” and, “It’ll be okay.” The American Cancer Society’s website, which is an excellent resource, suggests saying the following, “Sometimes people do die from cancer. I'm not expecting that to happen because the doctors have very good treatments these days, and this type of cancer usually does go away with treatment.”

Talk about death when it comes up in smaller, less personal ways. Use these teachable moments and discuss the news story, or the dead animal you found. DO NOT use the term sleep to refer to death. This is confusing and scary for children.

Share your family’s views about death and what might happen after. The children's book, The Next Place, offers lovely illustrations and reassuring sentiments. This is a good time to talk about your family’s religion or any spiritual beliefs. Tear Soup is an excellent workbook for dealing with the grief associated with any loss.

Read books specifically about cancer. Last Year, This Year, is a chronicle of one mama’s treatment and journey, with artwork by the author’s daughter. Billed as a hopeful, helpful book for kids with a loved one who has cancer, Butterfly Kisses and Wishes on Wings is supportive and educational.

I’m sure I’ll access many of these resources myself once Joshua starts asking more questions, which I know is right around the corner.

This all reminds me of an exchange I had with my three-year-old charge when I was a nanny some years back. He and I had been frequenting a pond behind a huge cemetery. We’d bring old bags of bread and feed the ducks and hissing geese. We had been plenty of times before, but he finally hit the right age and began to wonder. On the drive out one day he suddenly looked around and asked me,

“What is this place?”

“It’s a cemetery.”

“What’s a cemetery?”

“It’s a place where people are buried after they die.”

“What’s die?”

“People die when their bodies get worn out from being old or very sick,” I responded as calmly as I could, keeping in mind that I was conversing with someone else’s child. He was spot-on with his three-year-old persistence.

“They die and go under the ground?”

“Some people do, yes.”

“What happens after that?”

The ultimate question.

“People have lots of different ideas about that. But no one really knows.” He thought about this for a moment while I held my breath and waited.

“I guess it’s just a mystery,” he said brightly.

Indeed, it is the biggest mystery of them all.

6 comments:

  1. Beautiful post, Sarah, and your suggestions are so logical and straightforward. Thank you for sharing!

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  2. Thank you so much for writing this, so beautiful and important. It's a conversation that I dread having with my daughter (3 of her 4 grandparents had cancer, 1 of whom - my mother - passed away). I think just being calm and loving and open is key, as well as not making the "C-word" any scarier than it is.

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  3. Dear sarah, I've translated this post in Italian and published it on our site for parents, I hope it is ok with you:
    http://www.genitorichannel.it/esperienze/421-come-parlare-di-cancro-ai-bambini

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  4. I had a brain tumour earlier this year, which was mostly removed by surgery, and then the inaccessible bits were treated by a major course of radiotherapy. It is not gone, but it is controlled. I am lucky in that it was found by chance, and I have felt well throughout. But - as you say - no-one knows the future.

    My husband died of cancer 5 years ago (very short but complicated story), so our two children have already lost one parent, when they were 4 and 6. Since then, I have been honest with them throughout, answering any questions and talking about Daddy with them.

    Because of their history, my own illness has been less shocking to them than it would be to many children. And I am thankful for small mercies (though both see a counsellor once a month, just in case anything is buried deep).

    One thing I would stress, which you haven't mentioned in your post, is that children often need to be reassured that the cancer is not because of anything they have done or not done. Young children often shoulder the most tremendous burdens, and never give any outward clue of doing so.

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  5. Thank you for translating Barbara...I'm honored you've passed on my post.

    Dear Morag, You are so right about reassuring children that big burdens are not theirs to carry. I address that topic in my book, yet completely neglected it here. Thank you for the reminder. And be WELL! I send you healing and light. It sounds like you have been on a long journey.

    Best, Sarah

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