Book Launches a Heart-to-Heart Talk

Posted on: April 22nd, 2016 by
12

Calling the Shots in Your Medical Care is about to launch in just a couple of months. And, with the excitement building, I feel a sense of purpose and urgency and certainty that this is the right time for the book to make its debut.

But I haven’t been so sure this is the right time to tell Arielle that mommy had breast cancer.

As many of you know, some time ago, my daughter accidentally found my prosthesis, as it flopped out of my bra. We had an age-appropriate talk, and I was hoping that would be that for a while.

Well a while has come and gone. She’s almost eight years old now, and the doctor-fixing-boo-boo language no longer flies.

A close friend tells me, “You’re going to have to tell her, you know, especially with your book coming out. Do you want her to find out by reading about it in your book? Don’t let her find out this way. It should be you who tells her.”

“Not yet,” I say. “She can’t read that well yet. And she’s not ready.” (Read: I’m not ready.)

“When will she be ready?”

“Maybe when she’s a teenager?”

***

Every once in awhile, I catch my daughter eyeing my scars and human-created nipples in a more sophisticated way than before. She gently traces the scars with her fingers. Because I don’t want Arielle to have body-image issues, I act like I’m just fine with my body and that my breasts are the most natural things in the world.

Except they are not.

***

Arielle is happy about the upcoming book launch. She is so thrilled the picture on the book’s back cover will be of both of us. She expects to attend the launch party, and at least one reading and book signing.

“I want to be there [at the launch party] for you, mommy,” says my sweet child, “just as you’re always here for me.”

At this time, I’m looking for a venue to host the book launch party. The prospect of the party makes Arielle especially happy. She can’t wait to be involved. And that’s the problem – she wants to be involved.

She’s more involved than she knows.

***

Kids are smart. They know there’s more to a story, even if you tell them only a portion of that story. On her own, Ari has figured out that something more significant, more serious had happened to her mom. We just don’t talk about it. And that’s been fine with me.

We are open about her adoption story.

We are not open about my cancer story.

Ari is a sensitive, caring child and, being adopted, she has already lost a biological mother. I don’t want to alarm her that she might lose me, too.

I know I have to spill the beans before the book launch. She will hear too much there. And it would break my heart to leave her home with a babysitter on such a significant day. I don’t know what to do.

***

One day when I’m not paying attention, Ari looks through the completed manuscript I accidentally left on my desk.

She accurately reads “Can-cer” out loud.

***

“Honey, do you know what cancer is?”

She shrugs.

“It’s a disease that makes someone very sick. [Deep breath] Years ago, before you were born, I had breast cancer, and I was very sick. But my doctor gave me a medicine called chemotherapy to get rid of the cancer.”

“How did they give you chemo…therapy?”

“Through a needle. In this arm.”

“A doctor took my breasts off and used my belly fat to create new breasts. That is why I have such a big scar under my stomach. Baby, I’m OK now.”

“I’m not a baby, mom.”

***

A few days later, we are talking about why mommy wrote the book. Ari is pensive: “Like the time you had breast cancer, you needed help,” she says. ”And now your book will help other people.”

Wise beyond her years.

We hug.

***

And now that the book launch is right around the corner, I feel better that Ari and I had this conversation. I am honest in my book, so I must be honest with my own daughter.

We must be open about her adoption story.

We must be open about my cancer story.

Still, I cannot rest easy.

What happens when she discovers that breast cancer kills?

What happens when she discovers how scared I was and still am?

What happens when she learns the truth that a doctor didn’t actually fix me?

Will she hold these gentle lies against me? After all, isn’t withholding information a lie?

As she discovers more about breast cancer, we will walk on unknown terrain. But at least the road we are heading on will be paved in truth.

Arielle on Path

How did you tell your children you had cancer?

Have you kept your cancer a secret from your children or anyone else? Why or why not?

Do you have any advice for me, as I know I will have to give her more details in the future?


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12 Responses to Book Launches a Heart-to-Heart Talk

  1. Lori Marx-Rubiner had this to say about that:

    Oh Beth – both heart-wrenching and heart-warming at the same time.

    My son was 3 when I was diagnosed and we were upfront and age-appropriate. One thing I quickly learned is that the associations we have with cancer, especially death by cancer, aren’t necessarily what our children know. It was MUCH harder telling him at 13, when I received my mets diagnosis. His first words: “But I’m going to have to know it now!” His meager awareness of my cancer had faded away and came slamming back into his life (2 months before his bar mitzvah, no less!).

    Cancer isn’t easy on any level. Your exchange with Ari sounds natural and beautiful – and you have taught her where to place your cancer in the context of her life. And she’s taught you that she can take it in, small bits at a time.

    • Beth L. Gainer had this to say about that:

      Thank you for your comment, Lori. I’m sorry that you’ve been diagnosed with mets and also sorry your son and other loved ones have to cope with this diagnosis.

      You’re right about kids not associating cancer the same way we do. Ari is catching on, bit by bit, and the pace seems right. It’s so difficult: as parents we try to keep them innocent, but the world unfortunately does not allow it.

      Thank you again for reading my post and commenting.

  2. Scott Johnson had this to say about that:

    Beth it’s a tough problem but Arielle is already constructing a story in her mind and telling her is likely to be less of a jolt than you think. The mental illness in our family was “hidden” behind very complex explanations that weren’t believable to my sister and I from a very early age. It didn’t save us from hurt, rather, it turned our ability to trust what we felt into nonsense. Why did the ambulance take our Aunt away when she wasn’t sick? Why were we supposed to pretend not to see her sadness? Or not question suddenly being asked to leave the room when she ‘changed’ into someone else? Who was that, and could we love that person too?

    The sooner you make it normal to be Ari’s loving Mom complete with scars, the fewer stories there will be to undo later. Beth, you have to decide yourself how much she can handle but don’t start building family myths. They come back as mistrust and hurt.

    • Beth L. Gainer had this to say about that:

      Scott,

      Mental illness is not only a difficult trauma, but keeping it a secret seems to come natural in many families. I’m sorry you couldn’t have the truth right away as a child. We as a society need to embrace the truth and, as difficult as it is, share it with our loved ones.

      I will take your advice: I will not be building family myths. No way. Thanks for your sound advice.

  3. Nancy's Point had this to say about that:

    Hi Beth,
    Oh this is such a difficult topic. I am sorry you have to deal with this at all. You are right about kids being so smart. It sounds to me like you are handling “the telling” just fine. I love the way you say both of you have your stories – Ari’s adoption and your cancer. I’d suggest just continuing to be honest and to keep giving age-appropriate information. Also, you might want to give Ari the opportunity to ask you questions periodically about whatever she’s worried or thinking about regarding your cancer. These things might turn out to be not what you expect. As you know, my kids were older when I was diagnosed, but it was still hard telling them. My daughter later told me she didn’t like it when we held back or waited. But sometimes we had to process stuff first ourselves. It’s so hard. I know you will handle this as best you can and with love. That’s what matters most. As always. And it’s great Ari is so excited about your book! It’s all going to be such a special experience for you two to share. xo

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      Thank you so very much for your support and your comment. I really like when you said that I might want to give Ari the opportunity to ask questions from time to time. That’s a great point! After all, she might have questions, and if I don’t encourage them, then she might just keep them in and let them fester.

      It is so difficult telling kids at any age, isn’t it? I will continue being honest; after all, honesty is what matters.

  4. Kathi had this to say about that:

    <3

  5. Carrie had this to say about that:

    My son was 19 months old when I was diagnosed and he is now 3 years old. We’ve had to tell him, in an age appropriate way, about everything that has happened to me. I know that there will come a time when he is older and he will ask questions. I know that time will come sooner rather than later. It always does with him. But I have learned that honesty is the best policy, as long as it is age appropriate. I know it will not be an easy conversation but I have confidence that when he asks, he will be ready.

    • Beth L. Gainer had this to say about that:

      Carrie,

      You are very wise. You are right: your son will know when the best time is, and you will be prepared to tell him. It’s not an easy conversation, not at all. But honesty, as you know, is the way to go.

  6. Rebecca had this to say about that:

    Beth, all decisions surrounding cancer are difficult. It’s just hard to know when and how, but I would follow your instincts. I don’t have any children, but if I did, I would tell them about it, and like Nancy said, encourage them to ask questions and share what they are feeling (maybe not if they’re too young). You need to feel right about every decision you make, because each comes with a consequence. At the end of the day you are her mom and you know best. And yes, kids are very smart. They figure things out without you saying much.I still believe it’s important to have a dialogue though.

    I think the kind of relationship you and your daughter have will help with processing the news. She knows you.

    I am super excited about your book! Good luck. xx

    • Beth L. Gainer had this to say about that:

      Rebecca,

      Thank you for your support, and I’m glad you are excited about the book.

      You are right about honesty being best and having an ongoing dialogue. I know now that I can handle conversing with Ari about my cancer story.

      I feared it so much, but I realize that there is no need to fear. We want to protect kids, but we cannot shelter them from the realities of life.

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