@ Karen K. Wenzel

First published in the December 2017 Equiery

by Jo Meszoly

“I know who you are! You’re Brynn’s dad!”
The star-struck comment was directed to my husband at a party last summer. His name is Martin, but among these horsey guests, his affiliation to the infectious 7-year old was sufficient.

Like other one-name celebrities (Cher, Oprah, Madonna), our youngest child, Brynn, has become something of a micro-celebrity among equestrians in upper-Montgomery County, especially among the members of the Potomac Hunt Club – just by the force of her personality, famous for just being Brynn.
Had Brynn gravitated toward horse shows, she’d be just another cute kid in the ring. But at age five, she latched onto fox hunting. Within a few outings, she’d shunned the lead line, keeping up with the second field. That first season, she hunted 15 times, arriving late to kindergarten in mud-splattered jodhpurs and boots. A fox-crazy and brazen young rider, with presence and personality to spare, Brynn quickly developed a devoted following of fans. Her father and I merely the supporting cast in “The Brynn Show.” That is the Brynn that most people know.

The Brynn they don’t know straps on a vest every morning, which inflates with air and pounds her chest and back for a half-hour. She wears a nebulizer mask which delivers aerosolized medications and swallows a fistful of pills with every meal. And that’s on a good day, when she’s healthy. If she’s sick with a respiratory infection, things are far worse.

Brynn was born with Cystic Fibrosis, a genetic, life-threatening illness that affects her lungs, pancreas and other organs due to a defective gene that causes abnormally-thick mucus. CF is debilitating and patients generally become progressively worse. Decades ago, CF patients rarely survived beyond elementary school age. By maintaining lung health as long as possible, it is possible to at least slow the progress of the disease. At present, thanks to medical and therapy advancements, the average life expectancy is age 38, though many with CF live far longer. In reality, life span is largely dependent on how severely an individual is affected. With Brynn, that remains a question mark.

Raising Brynn
At equestrian events or public outings, people often remark that Brynn is cute, sweet and outgoing. But our family and friends know that she has an alter-ego that ranges from stubborn to explosive. Years ago, we nicknamed her “Brynnzilla,” based on the tyrannical movie-star monster who devastates Tokyo. Over time, it’s been shorted to “Zilla,” which leads to awkward explanations about her unusual name.

Like other parents, Martin and I grapple with resistance concerning chores, homework and cleaning up, but we also battle Brynn over her therapy, which she’s supposed to undergo twice daily, every day. Possibly every day forever. She hates wearing her vest, and the experience is time consuming and uncomfortable.
The few occasions when she was hospitalized were stressful and unsettling, but the daily struggle over her therapy is relentless. I shiver to contemplate high school, because she’s already mastered so many teenage skills. She deflects the various approaches we employ, wielding her temper, moodiness and unwavering resistance. There are days when I’d like to leave her curbside, beside the recycling bins.

While there’s an active CF community, the illness is inherently alienating. We consult other parents for advice, but our children will never commiserate or swap stories at summer camp or a special event. Patients with CF shouldn’t meet in person, because they may inadvertently infect one another with certain bacteria that lead to serious infections.

Kicking On
If the medical community had their way, we would focus on therapy seven days a week. But we try to strike a balance. In addition to hunting, showing and sidesaddle, Brynn is on swim and soccer teams – and we do chores, muck stalls and have dinner. Her medical team theorizes that her unusually high activity level makes up for her missed therapy sessions.

Horses & Horse People
If horses are part of Brynn’s therapy, then the equestrian community is our support group. When we go hunting, we are just members in the field. Only Brynn’s not. Brynn is something special. And not because of CF.

Brynn is just being Brynn. Independent and forward, she rides her own line. She barks orders, such as “Staff, please!” warning riders to yield for passing whips, and admonishes members who stray from the edge, and tread on a planted field. She banters with adults in a cheeky fashion. Hunting boosts Brynn’s spirits – but it also instills good manners, which keeps her truculent teenage side at bay (for which her father and I are grateful).

Meanwhile, as her parents, in order to fight our feelings of helplessness, we do what we can. Martin is an avid hiker and five years ago, he channeled his energy into founding “Xtreme Hike,” a fundraising event for the DC Metro Chapter of the Cystic Fibrosis Foundation. Held annually in late September, participants tackle a 25-mile, mountainous hike, in a single day. As a participant myself, I reached out to friends and family for donations before our most recent hike, held at Wintergreen Resort. Brynn’s friends and fans in our equestrian community contributed over $13,000 of the nearly $16,000 that I raised. Potomac Hunt members were responsible for the bulk, but there are always several horse people whom I’ve never met, but who have somehow, somewhere crossed Brynn’s path. And the kindness of the equestrian community keeps me going when I’m feeling low.

“Am I going to have to wear my vest for the rest of my life?”
Compliance is always a struggle with Brynn.

“Yes, Brynn, you’ll have to do thumping. Even as an adult.”
What I really want to say is: “I hope not. I hope that someday you’ll be free from this cumbersome machine, from your nebulizer, from the hospital visits and antibiotics. I look forward to the day when you cough, and my heart doesn’t sink with dread because I know that you are sick again.”

A Christmas Wish
Maybe, with the progress made in medical research because of the Cystic Fibrosis Foundation, just maybe there will be a day when I will be able to say, “You’re free, Brynn. You are free.”