This year my daughter, Desi, started kindergarten. She has been so excited for this milestone — we all have! While it is a very exciting milestone, it has also come with opportunities to learn more as a parent, hand off control, and further develop our systems for organization and planning.
Masks are a part of life for many of us now and Desi is no exception. We want to make sure she always has a mask handy. She prefers wearing fabric masks. As part of my system for preparation, every Sunday I put one assembled clean lanyard and mask each into five sandwich bags.
At night when I am setting up her school belongings for the following day, I set a mask bag beside her backpack. One less thing to remember in the morning!
Inside her backpack, I have a sandwich bag with five disposable masks. It is in a pocket labeled “masks” so when she wants/needs to change her mask, it's seamless.
Our goal since Desi was little was that she would self-carry and self-administer her enzymes at school. I knew we would need to fully prepare her for the off chance we'd have to “prove that she's capable” to school staff.
For years (not exaggerating), we have diligently involved Desi in the process of managing her enzymes.
- At 14 months old, she learned to swallow the pills whole.
- When handling the pill bottle, we made sure she saw us always wash our hands first and use a paper towel to dry.
- We talked through how we were taking pills from the container even when she couldn't talk to us. She soaked it all up like a sponge.
- We made sure to count pills out loud up to the number needed so Desi would know the order and how many pills she needed to take.
- As she grew, we asked if she wanted to take her pills with milk or water, which made the decision non-negotiable, but still gave her freedom to choose.
- We would then let her count out the pills and place them — with clean hands — in a bowl.
- As she grew, so did the number of pills she needed to take at one time (she's now at 8). She did so with intrinsic motivation and parental cheering.
- We knew she was gaining a sense of ownership over the process when, if her brother reached for the pill bottle, she would respond by quickly grabbing the bottle and explaining that this was “my work.”
- And then we finally got to the most basic step — opening the bottle!
Desi has now conquered all the steps she needs to, in my opinion, manage her enzymes at school without needing to go to the nurse's station every time she eats.
Our responsibility as parents and caregivers is to arm our children for the future. The importance of each tiny step will only grow over time.
CF and not COVID-19
Desi turned 6 right when school was starting. We anticipated Trikafta® would be around the corner for her. At the beginning of the school year, we met with her teacher, principal, school counselor, and nurse. We discussed what cystic fibrosis is, what Desi's routine and needs were at home, and how they could help her thrive at school. We also gave a brief run-down of the future. We stated that Desi would be starting a new medication and what that looked like. This offered us an opportunity to walk them through what to expect.
Once we knew when Desi would start Trikafta, I emailed her teacher and quickly gave a heads up and overview of what to anticipate.
Her teacher gave me the opportunity to come sit in the class that morning for an hour and a half to observe Desi and watch for side effects.
Respect each other's strengths
One of the major shifts that took place in our system was to acknowledge our strengths as parents. Communication is huge as parents of a child with cystic fibrosis. So what did that look like for us?
For me, in my Montessori teaching experience, I knew that a divided tray with lid would give Desi the maximum time to eat (fewer containers to open = more time to eat = more caloric intake).
However, food is my husband, Ross's, strong suit — he's an excellent and creative cook. For us, this meant he took on packing Desi's lunch. This was a big learning moment for me for several reasons. I was reminded that I am not the only one responsible for her cystic fibrosis needs. As her mother, I cannot do everything and do it all well. I had to allow for Ross's expertise, too.
One morning, after Ross had finished packing Desi's lunchbox I reached to close it and put it inside her lunchbox holder. “Woah! Woah!” Ross said. “I have to show her first. I've found that if I show her the contents, she is more likely to eat it all. If she doesn't want something, she'll tell me.”
What a lightbulb moment that was for me. I had never thought of that. Just like in other areas of life — everyone has a talent — it's the same as a parent of child with cystic fibrosis.
Look for the gift your spouse has and let them bring that gift to the table. Not only will it take something off your plate, but you will learn something. I know I did.
Being open to learning and changing is key. For our system, I found there were a few pillar tasks that were constant. I found as school moved forward our priorities shifted. Before school started, I thought “Ok, I'm going to do my best to get Desi's calories in before school so I know she is eating.” When school started, I learned they served breakfast and her lunch time was early in the day. Because she had a large portion of her food in the morning, my plan didn't make sense.
So now my plan is to be flexible about what she eats at home for breakfast. My focus has now turned to making an afternoon snack intentional — early in the afternoon, and high in calories.
It wasn't until school began that I learned more about where my focus and planning should be. I encourage parents to put pen to paper and break down what happens each day and when.
This will give you more of a sense of control and intentionality about where your attention should be. Having a system for organized planning makes our day move much more smoothly! And with more experience practicing we continue to learn and grow!
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