Rhiannon: A Mom Fighting to Protect Her Immunocompromised Daughter
Photography by Maddie McGarvey for SaverLife
A family faces an impossible choice: maintain their income or risk the health of their immunocompromised daughter.
In January 2020, Rhiannon’s daughter was diagnosed with an autoimmune disease that made her high-risk for COVID-19.
In March, Rhiannon’s husband took a partially unpaid leave of absence from work to care for their children.
With decreased income and increased expenses from everyone being home all day, Rhiannon used credit cards to make ends meet.
A sudden illness
In January 2020, Rhiannon was playing with her kids, enjoying the weekend, when everything changed. Her 5-year-old daughter, Kynslee, fell to the ground sobbing about pain in her legs. “I can’t walk,” she cried.
Rhiannon was shocked. Kynslee’s legs were swollen and covered in angry red spots. Her husband, Matthew, ran a hot bath, but Kynslee couldn’t even stand.
Rhiannon whisked her to a Cleveland-area urgent care while Matthew looked after their younger son. The medical staff didn’t know what to make of her symptoms, and the two had to go to the emergency room for a diagnosis that Rhiannon had never heard of: Henoch-Schönlein Purpura vasculitis—a rare autoimmune disorder causing blood vessels to leak in the skin, intestines, kidneys, and joints.
HSP symptoms generally pass after four to six weeks, but it has the potential for serious lasting complications. Doctors put Kynslee on multiple rounds of steroids. Rhiannon meanwhile learned everything she could about the disease, feeding her daughter an anti-inflammatory diet and fish oil supplements to relieve pain in her joints. By March, things seemed headed back to normal. Then the pandemic hit.
An impossible choice
With Kynslee’s immune system still suppressed by steroid treatments and with concerns about the effects of the disease, Rhiannon and her husband grew vigilant about protecting her from exposure to COVID. Fortunately, as an after-school program coordinator at a community nonprofit, Rhiannon could work remotely. But Matthew’s job as a factory plant manager required him to come in, and that began to feel risky, especially as the company had yet to implement COVID-protection protocols.
Women are 61% more likely to say that caring for children impacts their ability to earn money if their kids are completing remote schooling.
They decided Matthew would apply for 12 weeks off under the Family Medical and Leave Act. He would receive no pay for two weeks and two-thirds pay for the remaining 10.
“It was a tough decision, but at the time, him going to work wasn’t an option,” Rhiannon said. “We were terrified.”
The good news was that the leave allowed Matthew to care for their kids while Rhiannon focused on working from home. It had been difficult for her to get work done without Matthew’s help.
Rhiannon was lucky to have Matthew’s help. Women are 61% more likely to say that caring for children impacts their ability to earn money if their kids are completing remote schooling.
The family was safe and healthy at home, but Rhiannon had other concerns. Their bills were increasing.
Making ends meet
With everyone at home, the family felt safe, but it came at a steep cost. While their earnings dipped, their expenses soared. The children normally each ate two meals a day at daycare and preschool. With everyone at home, groceries and utilities increased up to to $800 a month.
They also continued to pay for the portions of Kynslee’s medical treatment not covered by insurance.
“We cannot afford not to work.”
In response, Rhiannon canceled discretionary expenses—Netflix, Spotify, and her gym membership. She used $2,000 from their emergency fund to pay for essentials, leaving only $500 in the account. After their stimulus payment ran out, Rhiannon was forced to ignore her normal frugality and use credit cards to keep the family afloat.
In June, COVID cases were again on the rise in Ohio, but they made the difficult decision for Matthew to go back to the factory. “We cannot afford not to work,” Rhiannon said.
A new normal
After Matthew returned to work, the children headed to daycare and preschool. By fall, Rhiannon too was back working in-person at her after-school program. Now back at full income, Rhiannon is focused on paying off the credit card debt they incurred during Matthew’s leave and rebuilding their savings. For now, they can only pay the minimum, but they’re hoping to use their tax refund to cover the balance.
Life remains more uncertain than it was before the pandemic. In November, a manager at Rhiannon’s work contracted COVID-19 and they had to shut down her after-school program for two weeks. Rhiannon worked at home during that time.
Kynslee has had more minor medical misadventures, fracturing her leg, but there hasn’t been another flare-up of vasculitis. In fact, both she and her brother are the healthiest they’ve ever been, Rhiannon says.
Rhiannon’s biggest fear is daycare and preschool closing again, forcing either her or her husband to stay home. Working remotely isn’t easy for her, and Rhiannon doesn’t know how the family would make it through another season with reduced income and increased costs. Her parents struggled with debt for decades. “I don’t want to have to follow in the footsteps of being in debt that I have to take 15 to 20 years to pay off.”
Rhiannon is appalled that America does not have better provisions for families in need. “The system is failing families when it comes to supporting them for maternity [and] paternity leaves,” Rhiannon said. “I cannot go back in time and change my experience, but I hope that in the near future things are different, and no one else has to struggle to make decisions on whether to take care of their family’s financial needs or health/mental needs. We should be able to provide for our families financially AND physically without having to choose.”