When my son, Evan, was diagnosed with cystic fibrosis more than six years ago, we were immediately immersed with love, support, and understanding from our friends, family, and neighbors. Somewhere among the pile of cards and well wishes, we were given Emily Perl Kingsley's poem titled, “Welcome to Holland,” in which she compares raising a child with an illness to planning a fabulous trip to the fast-paced, exciting country of Italy, only to discover mid-flight that you are actually destined for Holland.
“The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ... and you begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts.”
I've never forgotten this poem and have often paused and reflected on the words, “Find the windmills,” along this unexpected yet beautiful journey of raising my son, especially as of late.
It took a world pandemic, but -- for a moment -- it felt nice to have the whole of the world living in our reality, worrying our worries and talking our talk.
But, I can't help but feel as I did all those years ago. How quickly the world moved on and, once again, I find myself in Holland asking, “Where are the windmills?”
We live in a beautiful place.
Although we may not have been born avid outdoorsmen, we are quickly headed in that direction. Our once jammed-packed-with-sports evenings and weekends have been replaced with Camelbaks® and quality time exploring the beautiful Wasatch Mountains we call home. We've picked up kayaking, ventured out horseback riding, taken the unbeaten path on four-wheelers, and have even tried our hand at fishing. We have yet to catch a fish, but we have a renewed appreciation for nature, our bodies, and the peace that exists between the two.
There's no place like home.
When you've nowhere to go and no one to see, it brings it all back home in a hurry. Don't get me wrong -- there are some days I'd give just about anything to go wander Target, but I'm grateful for the slower paced days we now call our norm. Summer evenings spent together in the backyard. Dad trying his hand at the latest Traeger Grills®recipe that may or may not be done at the right time. Mom working away in the already meticulous flower bed, picking at anything that even resembles a weed. And two brothers, caught in an exciting game of PIG that will inevitably end in an argument.
But, somewhere in-between the flexible dinner time, endless weed pulling, and brotherly rivalry is the stuff memories are made of.
Connecting through technology.
My once color-coded paper planner has quickly been replaced with Zoom links and Google hangouts. Although I've got a long way to go until I resemble a person even close to tech-savvy, I'm grateful for the technology that keeps my family connected to the outside world. CF Foundation updates, telehealth appointments, the Marco Polo stay-in-touch app, social media -- all tools that have allowed us to stay informed and connected to our friends and support system.
Give us all the hope.
More than ever, we find ourselves relying on hope. Hope for peace during this unsettling time where lines are being drawn and people are being forced to pick a side. Hope that the oh-so-important, life-saving work in the world of CF continues. Hope that Trikafta® is coming soon to my son's age group. Hope for a vaccine so that we can once again feel the warm embrace of those we love most, enjoy a nice dinner out -- but mostly -- not have to homeschool anymore. Hope that someday this ends and that years from now, my kids won't remember this time as, “the time mom almost lost it,” but rather as the crazy time we spent together at home and went on lots of adventures together.
“If you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”
We are in this together, friends. I hope that you too can find your windmills among your storms.
Interested in sharing your story? The CF Community Blog wants to hear from you.
