As parents there are many talks we need to have with our kids. From sex to depression to bullying, serious talks are plentiful. But for parents of terminally ill children there is another talk I urge you to have with your kids sooner than later. Here is a great video on why taboo talks are vital.

The talk about life expectancy.

We want to shield our kids from the harsh realities of life, and many times this means we attempt to withhold information from them hoping we’re making the right decision to “just let them be kids” for a little while longer. But I want to change the narrative of that school of thought. Don’t misunderstand me, I don’t want to tell you how to parent, I want to offer a different point of view to consider. I hope you will read this with an open mind and consider having this discussion with your child throughout their life.

Children are resilient, and they accept life for what it is. As parents we are helping them build up the proper mindset to tackle all of the in’s and out’s of the world. This includes having the hard talks, and the reassuring silver linings conversations. Don’t discredit their intelligence enough to assume they can’t handle the truth of Cystic Fibrosis. If you start from the beginning, it will just be another aspect of their life, no big scary surprise to discover.

Cystic Fibrosis has been an uphill battle, when I was born, the life expectancy was still below 20. Now we are looking at mid forties, but only around half of the current patients are 20+. Every week I read in the news of a cystic fibrosis soul gaining their wings, and 9/10 times they are under the age of 25. That terrifies me as the parent of a Cystic Fibrosis child. So why do I want you to lay this hard true on your child?

If you don’t, someone else will.

In light of the attention Cystic Fibrosis has been getting in the media, with the release of Five Feet Apart, it is more imperative that your child hears it from you. But this has always been looming over you and your child’s relationship. Kids discover parts of the truth in many ways, during a school lesson, from a kid that knows how to Google on the play ground, or from their own curiosity as soon as they can Google. The first thing our doctor told us when we were first diagnosed was to NOT Google CF under any circumstance. So obviously I went home and googled it. It was overwhelming, but as an adult I was able to navigate the information. Our children haven’t fully developed that ability to filter out facts from fear.

Don’t trust they will come to you.

While our kids can handle a lot, they still need us to help them navigate information. But when they discover hard truths, they won’t always think “reach out for help” instead they will freak out alone or with friends.

By starting the conversation about the truths of Cystic Fibrosis and life expectancy early you are opening the door for them to reach out to you. By hiding the truth from them longer than necessary you are potentially making them question who they can trust. Be the person they can trust.

But how do you have the talk?

We have been open and honest about Cystic Fibrosis since day one. When little miss was about 2 our Respiratory Therapist told us to start talking about meds, treatments, and CF in general with her. She suggested that by telling our daughter the proper names for medications, and the reason she is doing them, and age appropriate ins and outs of CF, we’d be giving her a strong base to grow on. If we were killed, would little miss be able to articulate that she needs her albuterol or would she be saying fun words like “my shake shake, or puffer”? I knew from this conversation that I wanted her to have that base, and to trust us to provide her with the honest truth.

You’re not alone!

Let’s pretend you’ve decided to have the talk with your child, and you want to go into it prepared. I recommend talking to your clinic team first, they have had these talks, with kids and parents. They are full of resources and will even join you in the discussion with your child. But after that, here are some great resources for you to get started in talking with your children. Remember, you want to open this door, you want them to know that they can come to you with any questions about Cystic Fibrosis, and well any other serious talk topics. Tell them straight out that you are here for them.

Remember, you know your kid best, be prepared for questions, but don’t be afraid to say ‘I don’t know, let’s find the answer together’! Honesty is key, if they ask you a point blank question, never lie, when they find out the true they will remember your lie.

If you have any points you think should be added to the list below, comment or email me and I’ll add them!

2 – 5 Years Old

6 – 8 Years Old

9 – 12 Years Old

13+ Years Old

Other Resources