My shameful spiral began in silence. My daughter was juggling high school, softball, a part-time job, and cystic fibrosis. A typical teenager, she kept a vampire’s hours, awake long after my husband and I went to bed. One night I woke up shortly after falling asleep and realized I hadn’t heard my daughter’s nebulizer and airway clearance vest that night. Now everything was quiet.
I crept into the hall. The house was dark, her bedroom door closed. Was it possible I slept through her respiratory therapy or had she skipped it? She knew how important it was. I should have gone back to bed. Instead, fear pushed rationality aside and said, Hold my beer.
I tiptoed downstairs by the light of my phone. The nebulizer and vest we kept in the den were cool to the touch and positioned where I’d left them that morning. This was a new level of micromanagement, even for me.
The next morning, I confronted my daughter. Did I acknowledge how hard it must be to keep up with such a relentless routine? Nope. I overreacted and accused her of being cavalier with her life. She was rightfully furious that I spied on her. I felt awful, yet my hypervigilance only escalated from there. Once I knew she was capable of ditching therapy, I was on full alert for evidence she had.
Years before, my husband and I had attended a Family Education Day hosted by our CF Care Center. In one breakout session, parents shared stories about their teenagers’ rebellious phase, when they skipped therapy and missed medications. I had listened with the clueless arrogance of a parent whose only child was still young and obedient. That will never be my kid, I thought.
The social worker told our group compliance wasn’t easy.
“Think about every habit you should be doing for your health. Exercising. Getting eight hours of sleep. Eating your vegetables. Taking vitamins. Drinking water. Are you consistent with everything, every day? We ask these kids to be perfect, and it’s good to remember how difficult that is,” she said.
I tried to keep that in mind, but my anxiety outweighed my intellect. I was still feeling the loss of a close friend’s daughter who died from CF at 22.
Life as a parent of a child with CF is not a linear progression from novice to pro. It’s an ever-changing road with a map that is sketchy at best. For every victory along my own journey — learning to navigate insurance, teaching my daughter to swallow enzymes as a toddler (actually, kudos go to her), there were firsts that set me back emotionally. Her first tune-up. The first time she cultured for Pseudomonas. Her first heavy course of prednisone. Each was a reminder that I could only control so much.
Still, as rough as the road could get, I was at the wheel. Now I was expected to hand the keys to my newly licensed child, just when the road was snaking its way up a mountain with a steep drop-off along one side.
We adjusted to college and dorm life, our initial sadness quickly morphing into vicarious excitement for her new adventure. My daughter assured me she would take her pills, check her blood sugar, do her treatments.
I thought back to another CF Family Education Day when a couple talked about their son’s first year at college.
“What’s it like not managing his daily care?” I remember asking.
They looked at each other and grinned. “Like being on vacation.”
With my daughter living on campus, the relief of no longer organizing pills, setting up treatments, or sterilizing nebulizer parts was admittedly nice. Nevertheless, the emotional weight of being a parent to a child with CF remained. On weekend visits, I’d hear her cough and feel each one in my body. I was no longer used to it and couldn’t tune it out as I had before. Tension between us mounted as I texted my daughter too often with reminders about her health.
“Mom, I know how important it is to take care of myself, but I’m not perfect and your expectations are too high. I love you, but if you want a relationship with me, you need to back off,” she said.
I finally heard her and did what I should have years earlier. I found a therapist and booked an appointment. For me.
With the support of my therapist, I focused on my mental health and allowed my daughter the space to manage CF her way. I learned to bite my tongue and not ask about her checkups. If she mentioned going out with friends, I didn’t ask if she did respiratory therapy first. Gradually, it got easier.
A funny thing happens when you learn to let go. Eventually your kid takes over. Her care team had already been treating her as the young adult she had become. They looked at her numbers, asked her questions, and worked with her to form a realistic care plan. When offered a spot in the clinical trial for Trikafta®, my daughter jumped at it. Though it meant carving out additional time for appointments, she recognized the importance to her own health and to CF research.
Between the clinical trial and the COVID-19 pandemic, her CF care center allowed her to stay under their care past college graduation. She’s now working with her team to transition to an adult clinic, which means saying goodbye to the pulmonologist who has cared for her since her diagnosis.
A few years ago, this handoff would have left me reeling, but my daughter isn’t the only one who has grown. I trust her to navigate this next phase of her life. While I’m here to support her should she need it, she clearly has the wheel.
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