By the time I was 25, I had studied abroad three times and traveled Australia alone for eight weeks. I always had wanderlust and a level of independence that allowed for it. When our daughter Claire was born with cystic fibrosis (CF), I didn’t want to lose that part of me. But even more so, I wanted to instill in her that she can travel and experience all the world has to offer.

Still, I knew traveling with a medically complex child would be different. I learned with our first trip that it takes a lot more planning — more than what a trip normally entails, such as picking the hotel or booking excursions. It requires planning with a level of detail I didn’t know existed before I had Claire.

So what does it take to live an adventurous life when CF is a new travel companion? I put my research and efforts to the test, and the following are the most important things I have learned so far.

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An infant sleeps next to a stuffed animal toy.

Pre-vacation planning

For starters, location and access to medical care are now highly relevant. That trip my husband and I took to a desolate part of Thailand with no running water or cellphone service wouldn’t work nowadays. We have to ensure that viable medical options are within a short distance from where we are staying. That means researching the medical facilities and doctors in the area we are visiting.

We also need to consider if our daughter’s health insurance is applicable while we travel. Depending on our insurance provisions and location, we decide if we need to buy travel medical insurance. The travel insurance may need to include provisions for emergency transport in case adequate medical care isn’t available. It is always an investment I pray we don’t need, but it gives me some peace of mind.

Another big piece of preparing is ensuring that we have a supply of medications to travel with. Pharmacy deliveries and prescription pick-ups need to be timed to guarantee that we have the medicine in hand when we leave. Depending on the medication, sometimes that requires dealing with insurance to get an early refill. I always pack an extra supply of medications in case we get stuck somewhere. If we have a seven-day stay, I pack for 10. A lot of math and pill counting is involved.

Departure time

By the time we reach the actual trip, I feel like the hard part should be over. Nope! Navigating germ-ridden airports while toting all the medications and airway clearance equipment makes for a very stressful travel day. Because Claire needs to do her breathing treatments twice a day, we cannot travel without it. As someone who prides myself on packing light, it’s a different experience adding luggage for Claire’s medical needs.

On vacation

Preparing a hotel room for a stay with a CF child can be complicated. I used to wipe all surfaces down and spray and sanitize all fabrics. Now I try to do more targeted cleaning. A specific example was on a recent trip to Maui, when I was tipped off by an adult with cystic fibrosis that the island sometimes has dangerous bacteria in the water pipes.

Before the trip, I researched how to kill the bacteria in all the faucets of our condo. As I decontaminated a faucet with a cup of bleach when we arrived, I wondered how I had gone from staying in hostels in my 20s to taking this level of precaution to protect my daughter.

It’s all worth it, though. Seeing my kids experience new places and embracing that sense of adventure is one of my greatest joys. My husband and I decided early on we wouldn’t let Claire’s CF hold us back from seeing the world. While it’s a lot of work, I know that traveling the world will instill in her a sense of wonder and independence that will help her on her CF journey.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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