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Marrying Our Different Parenting Styles as We Raise a Child With Cystic Fibrosis

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Some of my worst moments are when I accuse my husband of not caring. Of treating our daughter’s chronic disease like a cold – something to be vaguely acknowledged but not overly worrisome. I do this not because it’s the truth. My husband is one of the most informed fathers I know, especially when it comes to our little girl’s cystic fibrosis. I do this because his approach differs from mine.

It has from the beginning.

The day the pediatrician called with the news that our daughter had tested positive for one mutation for cystic fibrosis, my husband was out of town. “Don’t worry,” he comforted from afar.

While I cried my eyes out alone, my husband set to work reading the medical literature and dusting off the old Punnett squares. Remember those from high school? The presence of one mutation confirmed my daughter’s status as a carrier; she needed a second mutation to have the disease. The odds of that were low.

Four weeks later, we got the phone call. It was official. Our daughter had cystic fibrosis.

I spent that first evening in bed, reading what I could stomach. My husband fielded phone calls from friends and family. “Was I ready to talk?” they wondered. I wasn’t.

At our first appointment in the cystic fibrosis clinic, I held back tears and cursed my forgotten nursing bra. My husband peppered the team with questions that were matter-of-fact, researched, measured. I’d done my homework, too. But I couldn’t get past the elephant in the room. When did I need to quit my job so I could spend as much time as possible with my daughter?

When my husband left to use the restroom, the pulmonologist commented on our different responses to the news. My husband had already progressed into “What do we need to do?” territory. I was still stuck at “What the hell is happening here?”

Seven years later, our daughter is doing well. Her lungs are strong, and she does all the things. School, sports, you name it. My husband is now the king of the prescription refill. He can recite every medication from every distributor at every refilling frequency. He works with countless care team members and countless companies to make sure my daughter’s therapies never miss a beat. He can tell you when we will hit our out-of-pocket max every year — within plus or minus 30 days.

I’m the “Did you wash your hands?” asker. The pill doler-outer. The respiratory therapy negotiator. The fever checker and blood draw holder-downer and doctor’s office advocate.

Some days, my daughter won’t do her therapy. I follow her for hours and get nowhere. Those days, my mind spins. What if her lungs suffer? What if she’s hospitalized for a pulmonary exacerbation in the heart of COVID season?

Occasionally, my husband will tell me to “chill out.” There is no more irritating phrase in the English language, especially when uttered from the couch. I usually respond with a surge in blood pressure and the fleeting thought that my husband doesn’t care. If I’m feeling a bit more charitable, I’ll admit to myself that he cares; he just doesn’t get it. Not like I do.

Of course he gets it. Of course he cares. We both have our daughter’s best interests at heart; we are just wired differently.

He sleeps soundly knowing that the odds of imminent catastrophe are low. I welcome a parade of “what ifs” into my bed. He is comforted by statistics. I am comforted by the eventual realization that we are doing the best we can. He is enthused by the intricacies of science and medicine. I want to know the top line and what it means for our daughter. He gets frustrated when I don’t want to talk through things logically or comprehensively. I get frustrated when I feel like he’s discounting my emotions.

Sometimes, this makes for a disconnect in our conversations. Other times, it makes for battle.

But we are human beings who have chosen to embark on this journey together. He’s got the map, and I’m trying to see the forest for the trees, and one way or another, we’ll get there. We may lose some breadcrumbs along the way. We may even pelt them at each other. But we’ll get there.

In the end, there’s no one else I’d rather have beside me.

Originally published: May 4, 2021
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