A knock. Then my daughter’s pulmonologist walked into our exam room. Behind him was our nurse practitioner, uncharacteristically somber and avoiding eye contact. A brick landed in my stomach.
Guest column by Abby Alten Schwartz
The doctor said Sammie’s lower airways sounded “coarse” and he “heard crackles in her lungs.” He also saw a shadow on her chest X-ray. These symptoms, along with her recent drop in weight and pulmonary function, all pointed to a lung infection.
“I want her on IV antibiotics for two weeks. Go home, pack, and bring her to admissions tomorrow morning,” he said.
The rest of our visit was a blur of instructions and note taking. In the hallway, I broke away from my husband and Sammie.
“Be right back,” I said, ducking around a corner before I lost my composure.
I pulled out my phone and called my lifeline.
“Tell me,” Val answered.
Cystic fibrosis is a genetic disease that causes a buildup of sticky mucus in the airways, pancreas and other organs. It’s a life-shortening illness that eventually destroys the lungs. Val, another CF mom, is my person, my anchor. My safe place to vent frustrations, unpack my worries and, occasionally, fall apart.
The safety of a shared bond
Within our friendship bubble, we can parade our neuroses and relieve our stress with gallows humor — unfiltered, unashamed. What we provide each other is as vital as breath.
Sammie’s cystic fibrosis diagnosis didn’t just change her life; it drop-kicked me onto a wholly unfamiliar path. From that point forward, CF would redefine the rhythms of my daily life and inform nearly every decision I’d make — parental and personal.
My emotions spun wildly, alternating between heartache, rage and mind-numbing fear. I had my husband, but he was reeling, too.
Erica Greene, a clinical social worker in Los Angeles, said people in couples dealing with a medical crisis often don’t have the bandwidth to manage their partner’s grief while navigating their own.
Friends and family were supportive, but their well-meaning platitudes revealed how little they understood. They didn’t know that a common cold could lead to a lung infection. That Sammie needed pancreatic enzymes before every meal just to digest her food. That the future we’d taken for granted was now uncertain.
I seesawed between steely independence and a longing to lean on others — to stop pretending I was coping when I was ready to break. But I didn’t want pity and was afraid my relationships couldn’t bear the weight of my dark thoughts or ugly, heaving sobs.
I steered clear of CF chatrooms, back then less a forum for support than a virtual buffet of horror stories, and I hadn’t yet connected with the CF community. I felt alone and unmoored.
Then a friend told me about Valerie Franklin, a local mom whose 4-year-old daughter was diagnosed with CF the same summer as Sammie. Our first phone call lasted for hours. She gets it, I thought. We met in person the next day and cried when we hugged hello.
The isolation of illness
Greene said it can be isolating when your child is diagnosed at a young age and you’re watching your friends with kids have a very different experience. Knowing another person, or group of people, in a similar situation to yours can feel more normalizing and inclusive.
“They can understand the need for having to shape plans and expectations around the person that you’re caregiving,” Greene said.
Laura Koehly, a senior investigator at the National Human Genome Research Institute who studies the impact of social relationships on caregivers, said that in addition to emotional support, friends with shared experiences can offer logistical support in terms of information and expertise — even if their children don’t have the same diagnosis.
They still get it, she said. “They don’t have to spend a lot of time explaining things that are difficult to explain.”
Val understood the exhaustion of clinic days, the anxiety of medical tests, and the endless tasks of dispensing meds and sterilizing nebulizer parts. Together, we learned to navigate health insurance, school policies and social conundrums — such as deciding whether a classmate’s sore throat warranted canceling a sleepover (yes).
Val knows the challenge of raising a child with as much normalcy as possible, while demanding adherence to a treatment regimen most adults would find overwhelming. She has also felt in her bones the dread that hovers like storm clouds.
Our daughters were teenagers when two other moms we knew lost kids to CF, each in their 20s. At their funerals, shellshocked, we exchanged looks that silently screamed our anguish, guilt and terror.
Years later, when the Food and Drug Administration approved a new cystic fibrosis drug that would prove life-changing for both our daughters, we cried — two old war buddies who’d survived the unthinkable.
Both Koehly and Greene pointed out that peer support in a group setting can give you access to a broader range of perspectives. Talking with other parents at CF family education events helped prepare me for stages we hadn’t yet reached, such as the teen years and leaving for college. Still, it wasn’t the same as turning to Val.
A benefit to one-on-one support, Greene said, is having “somebody who really is invested personally in your journey.”
Koehly said the caregivers she has interviewed appreciated sharing their stories because often “everything is focused on how their child is doing” and few people ask how they’re holding up.
Val and I came together because of our daughters, but we stuck around for each other.
Though Val moved away, our connection hasn’t diminished. Recently, we supported each other through our mothers’ descents into dementia — Val’s from Alzheimer’s disease, mine from Parkinson’s.
“Hey, we can be roommates one day when we’re both in memory care,” she joked.
“It’s a deal,” I said.
