Raising an Adult (in Training)

I want my daughter to be prepared for the world when she grows up, and that includes taking charge of her CF. She is only 4 years old, but it's never too early to get her ready to take on her CF care by herself.

| 6 min read
Jamie Roney

We are not raising children -- we are raising adults.

Recently, after going downstairs to put down her 7-month-old brother for a morning nap, I heard the rumble of Desi's machines. Desi had put on her vest for her chest physiotherapy (CPT) machine by herself, inserted the tubes into the vest, added her first medication into a nebulizer (that I had set out and assembled), attached the tube to the nebulizer, and then turned it all on, humming and helping her body.


She did it. All by herself. I was (and still am!) so proud.

Do I hate that this is our reality? Yes. Do I wish this wasn't a milestone? Yes. But I choose to look at this through the lens of gratefulness and pride that she understands HOW to take care of her own body. At 4 years old, she 'gets it.' 

So how did we get to this milestone? Here are some ways I supported and encouraged Desi. My hope is these will encourage you, too.

  1. Rethink your expectations. Children are capable of way more than we give them credit for. They organically absorb more information than we notice. They watch us -- the way we wash our hands before handling nebulizers, how we piece the clips together, connect the tubes into the CPT vest, dispense the order of medications. So, when given a chance, they want to (and often can) correctly replicate our actions by themselves.
    Toddlers can buckle their own vest and understand the name of a medication. Preschoolers can name their medications and their order or the time of day they need to be taken. Elementary school-aged children can assemble their treatments and speak to their clinicians. Middle schoolers can speak with pharmacists to tell them which medications need refills. High schoolers can do all of this and be cognizant of when and how it gets completed in a day -- as well as the consequences of not following treatment procedures. No matter their age, kids can play a part in answering questions at clinic and participating in simple, and eventually complex, steps at home!
  2. Provide opportunities to succeed. “Help me do it by myself” is a phrase that I learned when I was studying to be a Montessori educator. To me, that phrase means that Desi may not know the settings for her CPT machine but she can push the button to turn on the machine. She may not be able to open the vial of medication but she does know it is called sodium chloride and that she does it twice a day. 
    Basically, there are ways to give your child an opportunity to 'tag in.' Ask yourself, “How can she play a role in completing the task right now?”
    For example, when Desi was younger, I would talk to her as I increased the CPT machine button to 10 Hz. “Alright, this first part starts at 10. Would you like to turn it on?”
    Then, as she mastered that, I would ask, “Would you like to push the number arrow on your machine up to 10?”
    As she became more comfortable, I would then ask “Now what Hz does the first part start on? Yes, that is correct. Would you like to start it?”
    Each step builds on top of the other, laying a strong foundation of confidence in the child.
  3. Be mindful of your role and why. As new parents and caregivers, we learn all we can, but we don't learn everything all at once. Much of it is shared one piece at a time. It's the same for our children -- a teeny piece at a time. At clinic, we ask questions and learn best practices for treatment delivery, medication administration, mental health care, and compliance in the cystic fibrosis world. 
But, I believe it is also important to remind ourselves that this lifestyle and routine is a marathon filled with opportunities to become a relay -- we can take information we learn and periodically pass the baton to our kids.

It is our job to strategically arm our cystic fibrosis fighters with a toolbox of compliance and education. We walk the line of educating them but not overwhelming them, giving them moments of independence but not dumping it on them all at once. 

Yes, it is easy to gather nebulizers and pills in another room then say “Here, take these or go ahead and put this on, please.” But the more control Desi has, the less likely she is to push back. The more knowledge she has, the more confidence she possesses to educate others on what -- and why -- she does what she does. The earlier she is (strategically) exposed to her care the more likely she is to lead a lifetime of compliance; I remind myself of this daily. 

We never know if a door of opportunity is open unless we offer chances for our children to walk through it and, hopefully, thrive.

As caregivers we are not here to clip their wings, but rather to aid these little birds in successfully flying from the nest one day -- and soar wherever they want to go.

“It's not what you do for your children, but what you have taught them to do for themselves, that will make them successful human beings.” -Author Unknown

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Parents & Guardians

Jamie lives in Atlanta with her husband, Ross, Great Dane, Coley, and daughter, Desi. She completed her undergraduate degree in human development and family studies with a focus in child life and preschool development at Auburn University, and received a master's degree in early childhood education (specifically Montessori education) at Belmont University. She enjoys spending time in the mountains of North Carolina, appreciates the art of handwritten letters, and is currently working to implement the “Konmari method of tidying” at home. When not at home, Jamie can be found taking an exercise class at Pure Barre, tailgating and cheering on the Auburn University football team, or spending time with local moms of children with cystic fibrosis sharing ideas.

To follow more of Jamie and Desi's story, you can find her on Instagram @DrivingMissDesi or visit her online store.

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