At the ripe age of ten, my great uncle Arlie was the first truly funny person I knew. Even back then, I understood he was part of a generation of jokesters and storytellers that was quickly disappearing. Uncle Arlie had walked straight out of the landscape of the Depression-era Ohio coal country with Homeric tales of adventure and survival. His theater was four tables pushed together in the food court at the Tucson Mall, a short walk from his double wide. Arlie traded jokes with other old timers and retold tall tales that never seemed to tarnish. His twinkling eyes would find me in the complex desert of adult conversation and pull me in with a wink. Chewing a toothpick, he’d pat his knee and pull me over. “Did I ever tell you the story…”
The last few months, I’ve been thinking about one story in particular. It goes something like this:
Arlie and my grandpa Glenn grew up in Portsmouth, Ohio. They would tell you they grew up dirt poor but didn’t know enough to know better. In a family with six boys and two girls, they were left to make their own fun. Arlie and Glenn were the youngest boys and a perfect set of puppets for their older brothers. Glenn was quiet, fastidious, and cautious, Arlie, the exact opposite. They were an inseparable duo.
So one summer day, as the heat slowed the clock to a crawl and dried up all adventure, Arlie’s older brothers hollered out to him, “Arlie, go on and pick yourself up two good rocks and get over here!”
Now in the history of boys, young and old, a call to collect rocks for a task big or small has never not been answered. Rock selection is the great art that spans generations.
Arlie hurried and shoved two river smooth stones in his one good pocket and loped over to the shady oak under which his brothers had gathered.
“Up there. Do you see it? A big old bees’ nest.”
The nest was at least twenty feet up. The brothers stood in a ring below, each palming a rock. One rock zipped past the nest, then another. Finally, Arlie wound up and heaved his stone. The branch snapped, the nest crashed onto the ground, and an army of bees spilled out, ready for war.
The brothers scattered, whooping and hollering as the ran around the house swatting away bees. Their mother, Mary, burst through the back door to see a carousel of puffy faces running for their lives.
And there, in the middle of it all, was Arlie, all stung up but grinning from ear to ear. He looked at his mom and said, “Ain’t we having fun?”
Those words have come to define our days. The past four months have been hard. We’ve had to pull a few stingers out and ice a couple swollen eyes, but the honey has been sweet.
So in the spirit of my great Uncle Arlie, I want to tell you one more story. A second act, if you will. Far from a tall tale, it’s a true story. Largely unremarkable but painfully accurate in capturing the highs and lows of life with Francie.
This past Sunday, we piled Wilder, Shiloh, and Francie into the minivan to wind our way up to Bates Nut Farm near Valley Center for a morning full of pumpkin picking and hayrides. If you were to look up Bates Nut Farm on a map you would quickly notice that it’s nestled next to Hellhole Canyon County Preserve. I’m no writer, but that strikes me as an all-too-convenient, if not heavy-handed, literary device.
Longer trips with Francie require more planning. She’s still feeds by a pump and takes three medications multiple times a day. All of this is delivered through her NG tube. We pack bottles for multiple feeds and bring her 2p.m. meds, on the off chance we are still out.
Anticipating frequent family photo opportunities, we stuffed our children into carefully curated autumn attire. Pants and a long sleeve rugby shirt with a fall sweater for Wilder and a flannel dress for Shiloh. We were driving north, after all. I was sure we’d find some crispy fall weather.
As we pulled off the road into a packed dirt parking lot, the temperature gauge read eighty-five degrees. Hundreds of people milled around. Lines queued up in front of food trucks and hayrides. Wilder and Shiloh ran towards a city of giant inflatable slides and bounce houses. After tumbling, jumping, and sliding through the morning, we gathered up our sweaty kids and headed out into the pumpkin patch to find a spot for family photos.
Hot clothes and red cheeks dragged their little feet past giant pumpkins. We found a patch of shade next to a stack of haybales. I pulled Wilder and Shiloh together while Laura turned to pick up Francie.
“It’s out!”, Laura exclaimed.
“What do you mean?”
“It’s out. It’s all the way out!”
The “it,” of course, was Francie’s NG tube.
Puking or pulling out her NG tube had become a favorite pastime for Francie. And she had mastered the art of comedic timing.
When the NG tube was first placed, the team informed us that we would need to come in once every four weeks to change it out. Three months later, we have yet to make a scheduled replacement. Instead, I make an unplanned biweekly trip to the emergency room, typically after midnight, to see the familiar faces of Francie’s friends: the night shift nurses. I’ve become an expert at guessing ER wait times. A quiet waiting room means I might get out in three hours. A line out the door, six hours minimum.
Francie had decided that if we were going to take family photos, her NG tube didn’t fit with her autumn look. Francie’s MRI was the next day, and her final dose of all important medications was approaching.
We were an hour away from the ER. Laura and I looked at each other, caught our breath, and put on big smiles for an abbreviated day at the pumpkin patch.
While our perfect fall adventure was cut short, we still had a memorable day we can laugh about. There were lots of little smiles. And we got family photos with a fresh-faced Francie. We’ve learned to be flexible. To enjoy what we are given. To take the bees with the honey.
As Laura and I pushed a wagon full of kids back to the car, she looked at me and exclaimed, “Ain’t we having fun?”
I’m sitting under the familiar glow of the Rady’s Children’s Hospital fluorescent lights. This morning, we carried Francie into a vast surgical suite where she would have her first MRI. With her heart condition, sedation is a tricky proposition. ECMO (life support) is on standby in the event that her heart struggles and she needs help.
Yesterday’s pumpkin patch feels a million miles away, but we are closer than ever to getting answers. To having a plan. To climbing out of Hellhole Canyon and finding carefree summer days where selecting the perfect rock is life’s biggest challenge.