the c-word and the invisible string
Someone we love very much was recently diagnosed with cancer. And as tough as it has been to grapple with the news and emotions myself, realizing that I had to tell the kids was some next-level worry. The five days between receiving the diagnosis and telling them was terrible; I felt like I was lying to them (and not just the normal lying like, “you ate all the candy already” or “I don’t know what happened to those leggings with the permanently brown knees.”)
I googled “how to talk to kids about cancer” and found some helpful sites, like this one from cancercare.org. There are tips like:
- Prepare what you want to say.
- Set the tone.
- Consider your child’s age.
- Ask professionals for guidance.
But none of them gave me the actual words to say. How do you tell a 3-year-old and almost-5-year-old that someone they love so much has a very scary disease that could possibly kill them?
I did some Amazon research and found some well-reviewed books to add to my arsenal, which all proved to be pretty age-appropriate books to start the conversation about illness, grief, death and loved ones.
- I Miss You: A First Look at Death
- Finding Grandpa Everywhere
- The Invisible String
- Nana Upstairs & Nana Downstairs
I informed the Director of their Early Learning Center and their teachers, to help build a support team for the kids in advance. I informed Holdy’s therapist.
I called Olivia’s House, an absolutely wonderful grief and loss center in our city, and made an appointment to talk with a grief specialist. She armed me with a kit from PBS Kids called “When Families Grieve,” some wonderful coloring books about feelings, confirmation that I had selected the appropriate books, and most importantly, the confidence that I am doing the right thing, a reminder to take care of myself and her open door and phone line.
With the biggest pits in our stomachs, we prepped ourselves for a very serious conversation, not knowing what to expect. What we found was:
- An interrupting poop break
- A mid-hug fart
- A question regarding The Incredible Hulk
The levity was brought almost immediately and the conversation became much easier. I reminded myself that these are 3 and 4-year-olds. I tried to be as open and honest as I could.
Because I couldn’t find any actual words in my search, here is some of what I said, in case it’s of help to anyone who finds themselves in this same terrible situation:
- ____ is very sick, and it’s not sick like a cough or cold like you had. It’s a sickness called cancer.
- They have bad stuff inside their body that stops their body from working like it should (prompting the Hulk question).
- I don’t know if they’re going to die. I hope not. They have very smart doctors who are working to help them the best they can.
- I am sad. It’s okay to be sad. It’s okay to cry. It’s okay to be mad. It’s okay to feel whatever you’re feeling.
- Cancer is not contagious. You can still touch them and hug them and kiss them and they’ll want you to do all those things.
- If you have any questions, I am here to answer them.
- I will be honest with you and tell you the truth the best I can.
- Your teachers know and they will also be here to support you.
After telling them, I took the kids to visit our loved one, so that they could see that they’re still here with us, that they can still hug and kiss them, and that it’s okay to ask them questions, even questions about their death. The grief counselor from Olivia’s House told us it’s okay to have these conversations, and that it’s actually freeing for our sick loved one to be able to talk about it. What can be more freeing than a 4-year-old asking you if you’re going to die?
Later, we read The Invisible String, which really resonated with Holdy. It teaches kids that we all have invisible strings coming from our hearts that connect us with our loved ones. And nothing: not time, distance, anger, or death can break that string.
Holdy took to the book so much that when she had to work on a school art project later that night, she wanted to represent the Invisible Strings.
She drew the strings between the dinosaurs’ hearts and also to the dead dinosaur up in the sky. I sent the book along to school with her the next day to provide a frame of reference for her teachers.
The next morning, Holdy asked if she could take her string to school with her. She wanted to wear a shirt that she thought looked like strings coming from her heart.
She presented her art project to her teachers and friends and she told them all about the Invisible Strings.
The kids continue to have questions and will continue to have questions. I continue and will continue to answer them as openly and honestly as I possibly can. I still can’t tell them if our loved one is going to die.
We don’t know what the coming days, weeks and months are going to bring. But we do know that we’re stronger together. And that we’ll always have our strings.
*May 19, 2017 Update: It’s been a whirlwind few weeks with some exploratory surgeries and tests and meetings with doctors at both WellSpan and at Johns Hopkins, but overall we’re feeling much more positive now than when I first wrote this post. It seems that the cancer is definitely treatable and the Cancer Team feels comfortable they can “get it all” with some aggressive treatment. So we have a rough summer ahead, but we all have a lot of great support and we’re hoping to hear the words “Cancer Free” come fall.