For better or for worse, in sickness and in our child’s health
How this couple keeps their marriage strong while parenting a child with CF
The day my husband and I recited our vows at our wedding, I pictured our perfect future together, just as I had many times before: two kids, ideally a boy and a girl, and a house, maybe even with a white picket fence.
Ah, to go back to the days of naiveté. We knew getting married would mean putting in hard work. We were ready. But what would happen if life threw us a curveball and our marriage was challenged in unforeseen ways?
That’s exactly what happened when our daughter was born with cystic fibrosis (CF).
When Claire was in the neonatal intensive care unit, the only CF parents I knew were going through a divorce. With the added strain of an ill child on our marriage, I was terrified that would soon be our fate. Surprisingly, though, the divorce rate among parents of children with cystic fibrosis is consistent with the general divorce rate in the U.S. Still, the unique challenges that come with raising a child with CF inevitably affect a marriage.
Fundamental care goals
At times my husband and I have differing approaches to our daughter’s care. As CF parents, we have to analyze situations more intricately than typical parents — which can lead to more complicated disagreements. Usually they involve consulting with our daughter’s CF team and having exhaustive discussions.
What we never waver on is that we’re a team, united for our daughter’s health. Sometimes we have to strip it down to that fundamental goal to see past our conflicts. Fortunately for us, most times we do agree on the course of our daughter’s care, but we always make a plan to resolve our disputes when we come to an impasse.
Daily stressors
Daily responsibilities are a whole different ballgame. Even if you agree on the fundamentals, there’s still a list of demands placed on us alongside our normal parenting, working, and living gigs. Which parent will sanitize the nebulizer cups? Who will take the day off work to attend doctor appointments?
There are times when one parent has to assume more duties than the other, which can lead to resentment. All couples go through that juggling act, but our responsibilities directly affect our child’s health. That’s a lot of pressure. Pressure plus resentment doesn’t usually result in the best outcome for a relationship.
As a couple, we try to strike a balance. We definitely have a divide-and-conquer approach, sometimes even resorting to making lists and delegating on paper. Four years in, we’re a well-oiled CF parenting machine. We know that when one of us needs to slack on caregiving duties, whether it be for work obligations or self-care, the other’s turn is coming. It isn’t perfect, but it works for now.
Gratitude and intentionality
Something I’m proud of us for maintaining during those ebbs and flows is thanking each other. It sounds so basic, but sometimes simply saying “thank you” and acknowledging to your partner that you see the hard work they’re putting in as a caregiver helps when they have to carry the heavy load. After all, the truth is that having a child with a chronic disease is hard. You need all the support you can get, so you have to be able to lean on each other more than anyone else.
But prioritizing your marital bond while caring for a child with CF can prove challenging. Spare time and energy can seem sparse. Though it’s difficult, we’re doing well by carving out time to do things we love as a couple. We have to be intentional with the alone time we do get. I love to plan, and actively building quality time into our schedule helps us maintain our connection.
Parenting a child with CF has made us both recognize what’s important in life. Our marriage is at the top of that list. Our experience has helped us grow over time, as individuals and as a couple. CF has taught us that things don’t have to be perfect, wrapped up in a bow or a white picket fence. Our marriage didn’t turn out as picture-perfect as I’d imagined. In a lot of ways, it’s better.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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