Thursday, February 28, 2008

Talking to Kids About Death

I'm writing this Blog entry to anyone who has contact with Josie and Toby. This whole business of terminal illness and death is way too scary for us adults and having to expose our children to it at such a young age is heart-breaking. But I will talk about this because some of you have asked me to do so.

I will let you know what I have said to Josie and Toby about my situation so that you know the language and level of information they've been exposed to. I share this with you in the hope that it will help ease your anxiety about talking to my kids or your own kids about what is happening.

When I was first diagnosed with breast cancer in December 2005, I told Josie, who was not yet three years old, "I have a disease called cancer in my breast here (I put her hand on the lump), and the doctor will take it out so it won't make me sick. Then they'll give me some medicine so that the cancer won't come back. This medicine, called chemotherapy, will make all my hair fall out. It might also make me tired and sick. But then, my hair will grow back and I'll get better."

She didn't ask any questions immediately after this very short talk and went off to play. But over the following two years of my treatment, remission, and recurrence, she asked for further details -- everything from "What are cancer cells?" to "Are you going to die?" I've always been honest with Josie and answered all of her questions. My answer to that last question was, "All living things die eventually. Plants, insects, even people. So I will die someday, but probably not for a very long time."

Since this last spate of bad news about the spread of my cancer and the very realistic possibility that I may have weeks or months of quality life left, I've had to have another conversation with Josie today. It went something like this, over chocolate cake and baby cino at Starbucks (her request).

"Remember when you were three and I told you about my cancer? The surgery took out the lump and the chemo made the cancer cells go away and then my hair grew back, right? And you know that I'm bald again because those pesky cancer cells came back and I had to take more chemo that made my hair fall out. But it seems the medicine isn't working so now we're trying another kind of chemo. The doctors are working really hard to keep those cancer cells away and I'm trying very hard to stay strong and you're helping me also by looking after Toby and being kind to Daddy and me. We're all doing our best."

There were many pauses while Josie fiddled with cake and drink, giggled and tried to change the subject. I asked several times if she'd like to talk about this another time and just enjoy her cake, and she said she wanted to continue the conversation.

She didn't ask any questions, so I said, "What do you think will happen if we all try our best but the cancer cells won't go away?"

She said, "Then we'll just be patient and keep trying until they all go away and don't come back ever again."

"There are some things in this world that we can't control no matter how hard we try. We can all try our best, but maybe the cancer won't go away. And it's not the doctor's fault, it's not my fault, it's not your fault, it's nobody's fault."

"We'll just keep trying forever."

"Josie, the only thing that's forever is love. My love for you. That will never change, no matter what."

And I ended this "story" by asking, "What do you think is the most important thing to remember from what we talked about just now?"

Some mumbling; no clear answer.

"Three words, Josie: I love you. That's the most important thing you need to remember about what we've talked about today."

"What about more words?"

"Then it's 'I love you. And I always will. And I will always be in your heart, even if you can't see me.'"

Somewhere during this exchange, Josie asked what would happen after I died. I didn't mention the words death or dying; she did. I told her I wasn't sure. She said, "You'll go to heaven and be with God and look down at me from heaven." I told her I thought that was a nice thought. As you know, I'm not religious myself, but if Josie needs to believe in God and heaven to get through this, then I wholeheartedly encourage it. But to the very end, I will be honest with her and tell her that I'm not sure. She, in her infinite wisdom, seems more sure about God and heaven than I am. I'm thankful that she has this security blanket.

As for Toby... he's only two and a half years old. I'm not going to sit him down for a talk like the one I had with Josie. But as with Josie, I will speak about my cancer and treatment openly in front of him and take my cues from him about how much information he needs based on questions he asks. I've told Josie that if she ever has any questions about anything at all that she may hear me or other people say, she can ask me. I feel that sometimes, as parents, we tell our children what we think they need to know and in some situations, maybe we should allow them to tell us what they need to know.

I understand that my approach may be very different from yours. You may not want your children to hear the word "cancer" because they've had a grandparent die from the disease. You may not want your children to be exposed to the very idea of death at all at such a young age. I respect that we all have different ways of dealing with illness and death. I just want to allay any fears you may have of saying something to upset my children because you don't know how much they've been told.

One parent is worried her daughter might ask Josie if I'm going to die. I've told that parent not to be anxious about that. Children will have conversations and thoughts that we cannot control. But I'd be curious to know what Josie's answer to that question would be.

I know my kids well enough and feel confident enough in the way I've raised them and spoken to them so far, that I'm not too anxious about what they might hear from other children, parents, or teachers.

I'm more concerned about causing you and your children anxiety or fear due to my situation. If you're at all worried about what your children might learn about me and my cancer and there's anything I can do to ease your concerns, please let me know. My kids and family have been forced to face these difficult topics; we've had no choice. I don't want to force these issues on your families against your wishes, if I can help it.

So far, the outpouring of support from all of you has been overwhelming and heart-warming. I'm amazed at what kindness and generosity people are capable of. But I'm also aware of your need to protect yourselves and your children from fear and anxiety. So if you'd like me NOT to mention the word "cancer" in front of your children, for example, please let me know. If you have concerns you'd like to bring up with me, please feel free to do so.

It is unfortunate but unavoidable that cancer affects not just the patient, but everyone who comes into contact with the patient. I think this is harder on many of you than it is on me. Let me know if there's any way I can help make it easier for you. There's just so much I can do for myself at this point. It's not about me anymore. Now it's about how to make it okay for the people I'll leave behind, whenever that may be.

Sorry about the rambling -- I've had very little sleep lately, I have chemo brain, and now I have tumors in my brain. All great excuses for any tactlessness, faux-pas, or lapses in judgement I may have committed. Please forgive me if I've offended any of you, and bear in mind my intentions rather than my words.

11 comments:

Annie said...

Beautifully written Shin and not a chemo brain sentence noted! Here is a link that may assist anyone who would like to know more about talking to kids about cancer. It is so important to be honest and open, although not giving too much information adult style. The most important thing all round is to give love as that is what they will remember. It is a publication called "When a parent has cancer",
http://www.cancercouncil.com.au/editorial.asp?pageid=275&fromsearch=yes

You can download from this site or email for a hard copy,

Lots of love and peace to you, and may I send one of my favourite quotes from Elisabeth Kubler-Ross
"People are like stained glass windows, they sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light within"

Annie xxx

Ward and Deb said...

I think you've done the right thing with the kids and I agree it is only fair to be honest with them when they ask questions.
One thing you did forget though is to reassure them, especially Josie, that our love for you will always live on. If ever they need to feel that love we will always be here for them, to talk to them, to hug them and remind them how much they meant to you.
Let Josie know that your support network will keep on going for as long as it is needed.

Deb XXX

Paul mc said...

beautifully written Shin...x

Marge said...

You're stunning. I just love you so much, Shin...

m

Anonymous said...

Dear Shin,
I had the privilege of working with you briefly at CNBC and Mandy, your former real estate agent, told me about your blog. Your courage and grace through this difficult time is an inspiration to all, and it puts me to shame. You're in my thoughts and prayers, Shin. Stay strong, I am rooting for you! - Cheryl

Anonymous said...

Standing ovation!

Love-Rubina

Mylinh said...

Shin, this really touches me to the core. I have not known you for very long but I know when I meet a really special person that I want to hold on as long as I can. As a mother, this passage especially has bought me to more tears than other, so I don't know how you do it in this period of great physical, emotional and spiritual challenge. Your strength, your thoughfulness, the way you help us all cope, not just your children and Tony. Amazing. I am just so blessed to know someone like you and I am so inspired. Danny and I and our 2 kids are all here for you, not sure if we can help with anything, but know you can depend on us.

Your approach with Josie is so gentle. She is so lucky to have you as a mother, and you have in Josie a very beautiful and equally thoughtful daughter. I saw your parenting skills and love reflected on her face at the Lunar New Year before the Lion Dance came on. I have been meaning to tell you. Stay strong Shin. You inspire me. And I treasure every interactions I have with you, and your blog is a gift for us. Keep writing.
Love, Mylinh

Sasha said...

Shin, that was beautifully written and touched me very deeply. (Pass the tissues please!)
My older brother died when he was 10 from cancer and our parents were always very open about his illness and subsequent death with us. This was before there were ‘experts’ and books to advise parents how to handle situations like this. They just followed their instincts and seemed to be spot on. It certainly helped us with the with the grieving process though I didn’t realise just how much until I was older. My mother was an incredible woman and you remind me of her. I think you played it with Josie absolutely right. If your beautiful children have inherited even an ounce of your strength Shin, then they are going to be OK. You are one amazing, amazing lady.
With so much love,
Sasha x

Angela said...

Shin, this touched me soo much.
Your honest and open-minded approach with the kids is amazing..I always feel that people think kids should be protected from the understanding of "Cancer", but after what I have been through with my own family recently, Children need to know what's going on, what may happen, and feel that they are able to ask anything that goes through their little heads, instead of having to keep their thoughts to themselves...don't you feel better from talking with Josie?
Joshua did ask recently why Shin has no hair again, so I sat him down and explained that cancer has returned and the medicine made your hair fall out, there was silence and you could see his wee brain ticking, then he asked "Why Cancer?"..well I had to really think about this answer...
....Shin you are such a beautiful person and one of the best Mothers I know, your sparkle shines in Toby and Josie!
I sent you an email yesterday, just saying that my dad was initially on Gemcitabine & Dexamethazone...
Talk soon, big hugs,
Angela xx

Anonymous said...

What a brave daughter you and Tony have. So much like you. You can be so proud of her.
I had numerous evenings with Max in tears worrying about what would happen if I died. I used the line "all human beings die one day but I will still be here for a long time". It only seemed to calm his fears partly. What really helped in the end was when I told him that no matter where I was, in heaven or on earth, I will always be his mother, because I had been the one carrying him in my tummy - nobody else. The line also made me realise how lucky I was to be a mother.
I love you, and think of you and your family every day.

Christa

Anonymous said...

Dear Shin,As a Husband with two children 13 n 11yrs, who has lost his wife to cancer recently,U can rest assured that your children will be just fine when and as D time comes for U to go,it will b HEAVEN for SURE!!.SO pls let your children know that, because God wants All of us there!!-this is TRUTH!!),

The more opened U R with your kids about cancer,death and where U will b i.e in Heaven,will b reasurring for them. I know this because my children have expressed this sentiment.