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Talking About My Child's Illness with Schoolmates

Some Things are Harder than the Birds and the Bees: 

Talking About My Child's Illness with Schoolmates

 by Lisa C. Greene

I have to admit I was a little worried about how the talk at school would go. Even though I am well-trained in communicating with kids, I am still a mom first. And moms worry! It’s part of our DNA.  

The kids had just started a new school and the teachers requested that I talk to their classmates about their medical issues. Both of our children have cystic fibrosis. They need to take medication (pancreatic enzymes) to help their food digest properly. Of course their classmates have noticed Jacob and Kasey chucking down a handful of pills at lunchtime and have barraged my children- and their teachers- with questions. 

I spent a couple of hours preparing for the talk. I wanted it to be fun and informative- sort of like a health education class. Kids need visuals so I found a diagram of the digestive system that could be colored. Jacob and Kasey helped me gather some show-and-tell items: A nebulizer cup, an albuteral puffer, and opened up pancreatic enzymes placed in a baggie (kids always want to know “what’s inside”). 


We decided together what to talk about and I gave them lots of choices: Do you want to talk or have me do it? Will you be with me or at your desk? Kasey (in first grade) decided to have me do all the talking but she would be my helper. Jacob (third grade) decided to do the talking about pancreatic enzymes and have me teach about the rest. We were prepared and the kids were excited. Kasey’s little girlfriends were buzzing with anticipation. They were all so curious about CF. 

I was nervous. I do plenty of public speaking but I was more nervous about speaking in front of twenty first and third graders than 200 adults! These are my babies! And this is “life-and-death” stuff in front of their classmates. What if I blew it? One of my biggest fears was that a child would innocently ask, “Will Jacob (or Kasey) die from cystic fibrosis?” The honest “grown up” answer is, “It’s possible unless there is a cure since the median life expectancy is 37 at this time.”

I was nervous. I do plenty of public speaking but I was more nervous about speaking in front of twenty first and third graders than 200 adults! These are my babies! And this is “life-and-death” stuff in front of their classmates. What if I blew it? One of my biggest fears was that a child would innocently ask, “Will Jacob (or Kasey) die from cystic fibrosis?” The honest “grown up” answer is, “It’s possible unless there is a cure since the median life expectancy is 37 at this time.” But that’s not something a class full of seven- and nine-year-olds needs to know. I wasn’t exactly sure how I would answer this question and I wasn’t sure if my kids really understood this reality even though we had discussed it before when they asked the very same question years earlier. So, taking my cues from Dr. Foster Cline, I decided to ask them.  
   

Preparing for the worst, I casually (but with heart pounding) asked my son, “So Jacob. What would you say if someone at school asks you if you can die from CF?” He thought for a moment. Then he said, “Well, I would say people do die from CF. But we are more likely to live longer when we take good care of our bodies.” Wow!! The answer of my dreams! He knows the reality of the situation but also understands the role he plays in taking responsibility for his healthcare. Plus he understands the long-term impact of his healthcare decisions.

That massively encouraged me. Later on, I asked Kasey the same thing. She said, “Well, you can but if you eat healthy and take all your medicine then maybe not.” Bingo! Two for two. Both kids have an understanding of the reality of cystic fibrosis and are hopeful about positive outcomes based on their personal choices about self-care. I have to say I was a little surprised. I didn’t think that children this young could have such a mature attitude and understanding of such a heavy situation.
 
The talks went well that day. All of the children were curious, open and delightful. We had a lot of fun together. Kasey even demonstrated chucking down four (big) enzymes in one swallow just before lunch. The kids couldn’t have been more amazed if it were a flaming sword! 


And no one even asked the dreaded question. Go figure.

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Lisa Greene is the mother of two children with cystic fibrosis and the co-author with Foster Cline MD of the award-winning book Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising kids with Chronic Illness, Medical Conditions and Special Healthcare Needs.  For free audio, articles and other resources, visit www.ParentingChildrenWithHealthIssues.com.

Lisa C. Greene

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