Traveling Heavy with Cf

We’ve got traveling on our minds. Among other exciting trips our family has planned this year, Av herself soon embarks on an adventure to the Netherlands over spring break with her granddad (aka Opa) and cousin. While she’s a seasoned traveler, this is her first time going away anywhere for any length of time without me coming along. And there’s only one way she can pack: heavy. I’ll try the translation in Dutch: dat is zwaar. You see, with cf, I know of no humanly possible way to travel light.

We are destined to pack large. Our dog weighs 70 pounds and growing. Lou still needs a booster seat. Phil usually wants to bring along a canoe or a chainsaw or something. Since Av is a cellist, we’ve figured out precisely how to wedge the cello case into the back of our small sportwagon without crushing the bridge, which leaves room for…not much of anything else. On our big road trips, I’m typically the one in charge of packing up the whole cf show. Having over a decade of practice, and given an uninterrupted hour or two or half a day, I can expertly compress every element Av needs for her cf care into just three pieces: a 66-quart storage bin, a 15-pound roller duffel, and a cooler. These vessels take up merely three-quarters of the rear cargo hold. Who cares about clothes anyway?

In truth, the heaviest baggage when traveling with cf is not so much the luggage as the forethought and fortitude required. The dream would be to send my gal off to bike along the canals of Holland carefree. Visiting her Dutch relatives with nothing more than a sketchbook in hand and a passport in her pocket. The reality is, traveling and cf aren’t that compatible. If she ever wants to go to away, whether on a sleepover, to a sleepaway camp, or to college for that matter, the predicament is how to depart from the regular home routine of cf therapies. Seems like we always scramble for pills and a modified treatment schedule because, as well prepared as we try to be, spontaneity and cf still conflict. The central problem boils down to: cf never stays home.

Last time in Amsterdam

Of course, cf also never takes vacation. And so, off it must go as Av’s constant companion. If you’re curious about how much daily responsibility she’s going to have over the course of her Netherlands stay, check out the “quick” care tracker she and I drafted together. It may be a hassle for her to fit in so much therapy while traveling, but at least it will come second nature.

Av’s first solo voyage is bound to be not only her own rite of passage, but ours. Can you hear the echoes of “time to let go, let go, let go…?” Indeed, we’ve no choice but to trust in her abilities to care for herself. We trust she’ll return home to us in good, if not good enough, health. Should cf so happen to prevail and she gets sick, well, I’m sure we’ve got extra treatments for that. What’s most important at this juncture is her embracing an awesome adventure she can cherish for a lifetime. The world beckons to our intrepid young traveler. We are wishing her not only a goede reis, but blessings on her journey.

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