By the time Brittany Jencik, 49, got the call confirming that she had tested positive for COVID-19, the sickness had already spread to her 63-year-old husband, Barry and their children – all 18 of those living at home. By late March, their home outside Rochester, New York, had transformed from a lively hubbub, full of family, friends and special-needs therapists, into a self-contained sick house even their closest family couldn’t enter.
In the weeks and months that followed, the Jenciks faced challenges on a scale few people can imagine. Their 14 adopted children, ages 2 to 15, have a wide range of developmental disabilities and medically complex conditions. Two have Down syndrome, two have hearing deficits, two use wheelchairs, four use gastric tubes and several are nonverbal.
And the family knew intimately how even a routine ailment could devastate a child with medical complexities. Just a few years ago, their toddler son Tanner, born with a rare syndrome that affects development, died suddenly after contracting a common illness. Ever since, no family portrait has been complete without one of the kids holding his framed photo. Faced with an unknown virus slicing a brutal path around the globe, the Jenciks had no idea how their kids would fare – and they themselves were soon sicker than they’d ever been.
“There wasn’t much we could do at that point besides weather it out,” said Brittany Jencik, whose own fever had quickly spiked to 105 degrees. “I was absolutely terrified for my kids.”
As soon as Jencik shared her diagnosis, the family’s pediatrician immediately delivered as much medical equipment as she could find, including nebulizers, oxygen tanks and two types of breathing machines. For weeks, no one outside the immediate family entered the home.
“We had every medication, every piece of equipment short of intubation, and we used it all,” Jencik said.
The kids’ wide range of reactions underscored how unpredictably the novel disease affects each person. Of the 18, half were moderately ill for four to five days, as with other other bad viruses they’d had in the past. Five luckier ones developed only mild fevers and cold symptoms, even though some had underlying medical issues. But four kids – “the middles,” at ages 6, 7, 8 and 9 – were “absolutely walloped,” said Jencik, with symptoms continuing for weeks and weeks.
Research on how vulnerable children are to the coronavirus is mixed. While most children who are infected have mild or no symptoms, some do become seriously ill. Across the country, COVID-19 has claimed the lives of 72 children younger than 15 as well as 380 young people ages 15 to 24, according to the Centers for Disease Control and Prevention. The virus has also been linked to a rare but severe multisystem inflammatory syndrome that can occur a few weeks after a coronavirus infection and cause fever, vomiting, diarrhea, rash, difficulty breathing and heart dysfunction. Nearly 300 children have been hospitalized with the condition, and at least seven have died.
The Jenciks’ 8-year-old son emerged as the sickest child. Born extremely premature, he had epilepsy that they had brought under control with medication. But as his temperature skyrocketed, he suffered 27 seizures in less than two months. Like several of his siblings, he also developed an itchy “COVID rash.”
Even in the moment her family needed her the most, Jencik also had to confront her own vulnerability. A hardcore athlete whose day wasn’t complete without a 10-mile run or a 30-mile bike ride, she suddenly found she needed supplemental oxygen just to sleep at night.
“I felt like I was drowning in my own lungs,” she said. “Every time I laid back, it felt like an elephant was on my chest.”
The Jencik family started off like many others. When they met, Brittany and Barry had three children between them from previous marriages, and they had four more together. In 2002, their second-youngest child was born prematurely, and unlike his siblings, he didn’t like to be held, talked to or fed. When he received an autism spectrum diagnosis, the Jenciks threw themselves into understanding his needs and finding special services to help him thrive.
Having expanded their “parenting skill set” and excited to welcome more children, the couple began looking into special-needs adoption. In 2005, they became parents to their first adopted daughter, Talia, who has Down syndrome. And nearly every year since, they’ve gotten a call from an adoption agency about a child with a disability searching for a family who can meet their unique needs. The Jenciks keep in touch with the kids’ birth families, who sometimes visit, Brittany Jencik said.
Most of the children in the blended family require specialized therapies and time-consuming treatments to meet their unique needs, but they also benefit from having so many siblings to interact with, according to Joanne LaMonica, teacher of the deaf and hard of hearing who has worked for years with many of the younger Jencik children. Often when she leads a music circle, for example, the older kids – her former students – join in too.
“It absolutely helps that they have built-in best friends and playmates,” she said. “It’s so stimulating and nurturing and enriching – these kids are all doing better than anyone could have imagined.”
Making it Work
As the family has grown, the Jenciks have scaled up their home to fit their family. They have a 17-passenger van, two dishwashers and extra-large laundry machines. They recently added an in-law suite to their house, where the couple plan to move when they reach their senior years; they’ve committed to keeping the house so the kids can live there together into adulthood.
Routines are the backbone of the family, said Jencik, a born planner who’s never needed more than four hours of sleep. Every night, she lays out clothes for each child and plans the next day’s meals; the family doesn’t have any paid help aside from the kids’ therapists. In the morning, Barry typically mans the bathroom, where he ensures that each child bathes and assists those with limited mobility, while Brittany serves breakfast. And the kids are expected to help with daily tasks like cooking and cleaning, depending on their individual abilities.
Most people outside the family can’t imagine themselves caring for so many children, particularly ones who have special needs. Raising a child requires not only financial and logistical resources, but also emotional energy, according to Chaitra Wirta-Leiker, a Denver-based psychologist specializing in adoptees and adoptive families, who does not know the Jenciks.
When considering whether a family may be able to add another child, Wirta-Leiker assesses a number of attributes: “What is their internal emotional capacity? What do their resilience and coping skills look like? How effectively are they handling the children they’re currently caring for? If they’re overwhelmed, will they reach out for support?”
Her priority is making sure parents have enough time and energy to connect with children individually and meet their unique needs, like fitting therapy sessions into the family’s schedule. For this reason, she believes adoptees generally do better in families with just a few children, especially for children with higher needs – though she notes there are exceptions, particularly when there is a stay-at-home parent.
“I wouldn’t say that 14 children is not allowed, but there are definitely concerns or red flags when there is a family with that many children,” she said. “There have to be some very special circumstances in place that would allow them to support every child’s needs to the best of their ability.”
On the other hand, when adopted children have done well with a family in the past, social workers may feel more secure placing children with them again in the future, said Mary Boo, executive director of the North American Council on Adoptable Children, who over the years has been in touch with a handful of larger adoptive families. That can lead to more and more children joining a family over time.
“In general, the motivation should always be about what’s best for this child,” she said. “The families that we know of see there’s a need, and they know they’ve done it and can do it.”
Sick House, School House
The sudden descent of coronavirus on the Jencik home tested their support system – and their own abilities – unlike anything they had faced before. Family and friends wanted to help, but they could only leave supplies and mountains of food outside on the porch, blowing kisses through the window.
The kids needed a lot more rest. At their sickest, a few were sleeping close to 20 hours a day; Jencik would lay them down on the couch so she could keep an eye on them while doing housework or cooking. Others were exhausted but too uncomfortable to sleep well.
On the other hand, Brittany Jencik never felt she needed more than her usual four hours of sleep, enabling her to keep up with most of the daily housework, with extra help from Barry. They did “cut a few corners” to reduce their load, using paper plates to avoid running both dishwashers after every meal, and occasionally allowing the kids to sleep in their daytime sweatpants and T-shirts to minimize laundry.
Still, Jencik was determined to keep the kids on a routine and stimulate their development. She created a schedule for virtual school, which ran from every day from 9 a.m. to 4 p.m. Because of limits on internet bandwidth – once, the family was scheduled for 77 Zoom calls in a single day – and the kids’ shorter attention spans, they weren’t able to keep up with all the special services they typically receive in person.
“It was me against 18 kids, so I couldn’t really do one-to-one Zoom therapy and leave the other 17 fending for themselves for an hour,” Jencik said. “We’ve had to pick and choose, which is a shame, but it’s the reality of the situation.”
Instead, she led the kids in group activities, like outdoor scavenger hunts and cooking lessons, incorporating ways for each child to work on the target skills outlined in their individualized education plans.
“We knew we needed a routine from day one,” she said. “Looking back, there were days where we made crafts as my head was just laying on the counter.”
The parents also looked for ways to help their children understand the disease that was taking such a toll on their family and keeping them out of school.
“We started doing a word of the week to give them a little bit of understanding into what was going on in the world right now – we did pandemic, we did quarantine, we did isolation, compassion, patience,” Jencik said.
As the weeks passed, by mid-April, the family began recovering one by one – but again, the new disease was full of unpleasant surprises.
“The healing was really strange – it wasn’t like you were progressively getting better, it was like one good day, another good day, and then a terrible day,” Jencik said. Four months after she fell ill, she still needed oxygen to sleep comfortably, and her scarred lungs made exercising difficult.
Her 8-year-old son, too, wasn’t yet back to his baseline, and she wasn’t sure if or when that might happen. His doctor had doubled the dosage of his anti-seizure medication. Noticing that he was now nearly glued to her hip, Jencik worried about the emotional toll the disease had taken on her kids.
Once the worst had passed, she asked her children what had been their favorite moments of their time at home together, thinking of the new crafts and projects they’d finally had the time for. Her 9-year-old daughter, who has an intellectual disability, replied that the best moment was when she realized that everyone in her family was going to survive. Jencik was pained by the fear in her daughter’s words – a fear she knew well, but had hoped to spare her children.
“The best advice I can give,” she said, “is don’t underestimate this.”
Megan Conn can be reached at [email protected]