My son Eli received his cystic fibrosis diagnosis at two weeks.
At some point in the months that followed, the initial devastation and shock that my infant had a lethal genetic illness waned. Life felt good again and my husband and I vowed to do everything we could to give Eli, now 2, a happy, healthy childhood, along with our daughter Laila, 5, who doesn't have CF.
Happiness has become sacred to us, a major focus. Few things make us happier than traveling together.
That's why we set our sights on a family road trip from Oklahoma to Sarasota, Fl. During the trip I learned a thing or two (or 10) about traveling with little people -- not to mention a little person with CF.
Double down on preparedness.
One thing we did right, thank goodness, was to begin taking stock of medicines and equipment a few weeks before the trip. Refills and parts affiliated with CF often have to be ordered from specialty medical suppliers and pharmacies. I used an old-school train case (kind of like the original Caboodle -- remember those? Ha!) to sort Eli's medicines. We had to remember to keep ice in the cooler for a 20-plus hour car ride, too. Gotta keep that Pulmozyme refrigerated, after all!
Is it really so very important to get there early?
My husband had big plans for us that entailed hitting the road at 4 a.m. In *theory* it sounded like a great plan. In reality, we slept in. We slept in because we needed sleep, and that was more important than sticking to a plan. We ended up messing up our car rental reservation and didn't hit the road until 11 a.m. We all took it in stride, though. That's because:
You've got to be flexible
Traveling with young children (and in general), if you are not flexible, you will lose your mind!
Yes, it may require heroic effort to stick to your treatments.
With so much to do and see, not to mention hours spent on the road, keeping up our care routine became a major challenge in the 10 days we spent on a journey to and from Florida.
If I said we were perfect at it, I'd be lying. I'd give us a 'B' for a first effort, as Eli missed three vest sessions in ten days, including forty hours of driving. My takeaway, though, is that we tried, and the reality of a cranky, over-tired toddler won out over perfection. I would also recommend that camping families pack a single-range to boil nebulizer parts! We had to borrow a relative's.
Live a little.
We worked hard to save for our trip to Florida. After a tumultuous couple of years for my family, it felt good to splurge a little. I bought new movies from Target to play on the way down -- those saved us on the looong days driving. We explored a new type of traveling by joining RV culture for the week. Eli and Laila played in the toddler pool. Mom and Dad looked on with margaritas in hand. We hosted a barbecue at our little campground for our relatives, attended a low country boil with some nice folks we'd just met and spent a lot of time splashing in the ocean and making sand castles.
I felt it necessary to perform “I got you Babe” as a solo on karaoke night at the RV park. I gained at least one superfan, though it's possible the heights of his admiration were linked to his bar tab.
Karaoke aside, in the end, the weeks of pre-vacation prep and lugging around Eli's vest were totally worth it. I can't wait for our next trip.