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
- Names of Medication, & purpose. “Let’s do your albuterol to open your airways.” At 2 it’s just you talking, but the repetition will allow them to fully understand and be able to be quizzed on it by 5. Our RT told us to think of all of this as can of condensed cream of mushroom soup. Can being lungs, soup being mucus. The albuterol expands the can opening, the hyper tonic scraps the can, and the pulmozyme is the can of water you add to the soup. Then the vest moves it all out and into the bowl.
- They should know that they have Cystic Fibrosis, and that it causes sticky mucus to build up in their lungs. That they do their treatments to help clear this mucus out.
- Video: What is cystic fibrosis?
- Video: Getting Nosey about CF with Oli and Nush
- Books: Children Edition
6 – 8 Years Old
- Kids want to be in control of aspects of their life, they can be in control of their CF. Let them put their medications together, put the nebulized meds in the cups, and control their enzymes. Create a schedule or to do list that they can complete daily. Discuss why it’s important that they do these medications.
- Introduce other children their age that also have Cystic Fibrosis to them via the internet. Hangout, Marco Polo, and Pen Pals are great ways to get them in touch with someone their age, that is going through what they are going through.
- Remember that everyone has a thing. Some people have diabetes, cancer, or even poor teeth. Completing treatments is taking care of your body in the same way we brush our teeth to keep them healthy.
- We started discussing the topic of declining lung function in this age bracket. If she doesn’t do her treatments her lungs will suffer, and it’s harder/almost impossible to gain back lost function. She is protecting her lungs now for her future self to use.
- Start discussing how Cystic Fibrosis affects the rest of their body. Such as why it’s important to eat healthy whole fat meals.
- Discuss how quickly their health can change, and why it’s important to stay 6 ft away from other CFers & the sick.
9 – 12 Years Old
- There isn’t a cure, this is a life long illness that will only progressively get worse. There are medical advancements, let them know how old they were when Orkambi came on the market, or other major advancements. Preventative care is our best defense against Cystic Fibrosis progression.
- Let them be involved in the discussions of treatment plans, and make them feel included in the talks about their health.
13+ Years Old
- The reproductive effects of Cystic Fibrosis. Female. Male.
- The hard truth about life expectancy. If it hasn’t comes up by now, it’s time to let them know. Discuss what a life expectancy number is, and median age. Find a person in their 20s to talk to your child about their life with Cystic Fibrosis. Discuss lung transplants, and long term effects of the mucus on all organs.
- Begin teaching your child how to make decisions about their health. Work through how you weigh out the choices you’ve made as far as treatments and plans go. Starting this now will prepare them for taking over their care when they turn 18. You’ve already laid great ground work by including them in the discussion. Let’s let them make some choices!
- Books: Teen Edition