Holiday Travel with Cystic Fibrosis

Finding the Magic in the Journey

By Laurel Douglas, CF Mom

The holidays have always been a season of travel, family, and tradition for us- the long drive home, the smell of familiar kitchens, the laughter that fills the house late into the night. But when my now 12-year-old son was diagnosed with cystic fibrosis, I remember wondering if that part of our life was over.

Those first months were a blur of learning new routines- treatments, medications, endless schedules, insurance battles, and dietary changes- all while trying to remember to take care of myself, too. At the time, even the thought of traveling felt impossible.

But I’ve always loved to travel. I had so many dreams of the places I wanted to share with my kids. And because my family lives nearly 500 miles away, travel wasn’t just about adventure- it was how we stayed connected, especially during the holidays.

We had no choice but to figure it out. Year by year, I learned how to plan and organize every detail so we could spend two weeks at home each holiday season, surrounded by family, traditions, and a little holiday magic.

Here are some of the lessons I’ve learned along the way.

Medications: Overprepare and Breathe Easier

It may sound excessive, but I always pack at least two extra weeks of every medication. Life happens! Pills spill, refrigeration is tricky, or you realize a refill was miscounted. Having a cushion removes so much stress and gives you room to enjoy the journey.

I also love using weekly medication organizers like this. Each daily box fits neatly in my purse or travel bag, and it keeps my son’s enzymes safe from temperature swings. Prepping several weeks at a time makes it easy to see what needs refilling… and then I pack a couple more weeks, just in case.

Because the holidays fall at the end of the year, I also make sure to check refills early. Insurance deductibles reset in January, and if we’ve already met our out-of-pocket max, I want to take full advantage. Sometimes that means coordinating a one-time delivery to my parents’ house or planning a pharmacy pickup on the road.

Snacks: Pack Smart and Keep Energy Up

Whether we’re flying or driving, snacks are essential and so is hydration. I always bring a bottle of water and a small pouch of gummies or lollipops that don’t require enzymes, perfect for a little treat or distraction when patience runs thin.

Some of our favorite CF-friendly travel snacks include:

  • Protein shakes
  • Beef jerky or sticks
  • Cheese sticks
  • Peanut butter bars
  • Trail mix (link November Kids in the Kitchen video here?)
  • Salted cashews or pistachios

Small snacks can make a big difference in comfort, calories, and keeping the trip smooth!

Airline Travel: Confidence Through Preparation

Flying with cystic fibrosis can feel intimidating the first time, but a little organization makes it manageable. My son’s vest bag doubles as our main “medical bag” which does not count as a carry-on, and I always keep it with us instead of checking it.

Inside you’ll find:

  • All medications
  • All medical equipment
  • A doctor’s letterexplaining CF and medication needs (we’ve never needed it, but it’s reassuring to have)
  • A current medication listprinted from MyChart
  • A large reusable water bottle(filled after security)
  • A “Medical” luggage tagfor quick identification
  • A small coolerfor refrigerated meds or drinks like milk, Pediasure, Orgain, or Boost
  • An Airtag… just in case (I recommend you put one in every bag, not just checked)

With everything packed in one organized bag that stays with me at all times, security is smoother and emergencies are easier to handle!

Hygeine and Health: Finding Balance

Holiday travel also means cold and flu season, and that always adds some extra stress. My advice? Do what makes you comfortable.

When my son was a baby, I wiped everything- car handles, tray tables, hands, toys. Over the years, I’ve learned to relax a bit. We still get flu shots, wash hands often, and keep sanitizer handy, but I try not to let fear overshadow the joy of the trip.

Remember: everyone is carrying something unseen. A little extra patience and kindness- in crowded airports, long lines, or traffic jams- goes a long way.

Have Fun: The Magic Travels with You

Sharing holiday memories with family is one of the greatest gifts. I often find myself wondering how many more Christmas mornings my kids will wake up searching for that magic. The sparkle in their eyes as they run to the tree and the excitement of being surrounded by love.

As my son gets older, our traditions are evolving. The toys are smaller, the laughter a little different but the heart of it remains. The magic is still there.

I’ve learned through years of traveling with cystic fibrosis that life might look different, but the joy, connection, and wonder of the holidays don’t disappear. They just travel with you.