This is a guest post by Ali Brown, an advocate for both the CF community and (whole plant-based) food as medicine. She is sometimes a writer, always a wife and mother. She lives with her sweet little family in Maine.
It sounds corny but it’s true: I always wanted to be a mom. And it sounds dramatic, but it’s also true; I wasn’t sure I’d live long enough to become one.
I have cystic fibrosis (CF), a genetic and progressive disease that causes recurring lung infections and restricts the ability to breathe overtime. When I was born in 1988, the life expectancy was just shy of adulthood and the disease-causing gene hadn’t even been discovered yet, let alone most of the life-sustaining treatments I’m afforded today. Fortunately, things change, projected outcomes included.
This week, I turned 33. Five minutes ago, I put my 19-month-old toddler down for a much-needed nap after a busy morning running errands and playing in the yard on what I hope is the first of many beautiful Spring days here in Maine. Sometimes, between the blur of tantrums and toddler kisses, playdates and stuffies, I still can’t believe this is my life, my child, my motherhood.
When I sat down to write this post, I thought I was going to write about what chronic illness taught me about parenting: the importance of self-care, finding balance, asking for help, listening to your body, all that good stuff. But once I started writing I realized it’s the other way around. Becoming a mother has proven far more illuminating than any diagnosis could ever be.
It was a struggle to conceive. For a time I wondered if my infertility was a sign that my body was just too broken for motherhood, even though my heart told me otherwise. Then after a medicated IUI, I finally got that Big Fat Positive. The joy was supreme, but anxiety crept up fast behind it. CF can be relentless. On my best days I am worn out come dinnertime. On the worst days, I’m coughing up blood and struggling for air. For years, I’d been so concerned about not being able to get pregnant but now there I was living my dream come true and I was consumed with What Ifs:
- What if I get hospitalized when she’s just a baby?
- What if I have to go on IV antibiotics and need to stop breastfeeding?
- What if I don’t have time to get all my treatments in?
- What if things get bad and I die?
Heavy thoughts, for sure. While some of them can be chalked up to hormones, others were grounded in reality. It may no longer be a childhood disease, but the life expectancy for a person born with CF today in the US is just 46 years old. And half of the CF deaths reported in 2019 occurred before the age of 32. Lots to dwell on for this hormonal thirtysomething.
To add insult to injury, at 14 weeks I found out I had gestational diabetes. It’s common in women with CF, but known risks aside, it corroborated fears that my body was inadequate, incapable. I regret to say I spent too much of my pregnancy not just counting carbs but holding my breath, waiting for the other shoe to drop.
Then something amazing happened: Winnie was born. And everything changed forever, including my mindset.
All those what ifs, the nagging anxiety, the negative self-talk about my “defective” body, it was all displaced. The worry (and the guilt) didn’t disappear. I don’t know if they ever will. But they were overpowered by something much bigger: motherhood. And the realization that I am stronger than I ever knew.
Giving birth was a wakeup call to the innate and wholly feminine power within (forgive the woo-woo, but it’s true!). It was the first time in my life I felt like my body knew exactly what to do. It knew when to push, when to rest, when to birth. My body wasn’t broken! Lung functions and life expectancies didn’t matter in that moment. I was a mother first, CF patient a distant second.
And when they put that child (my child!) onto my chest, after a two-day pain meds–free induction, it was like I was reuniting with someone I’d known forever. I knew then I was capable of everything she needed from me, defective genetics be damned.
I’m not saying parenting with CF is easy. It’s not. There’s navigating the practical things, like finding time to sit down for two 30 minutes sessions of airway clearance treatments every day. Not a simple task with a busy (and clingy!) toddler in tow. After lots of trial and error, I’ve found getting up before she wakes in the morning and doing it once she’s gone down for the night is my best bet at getting a full treatment in. Less rest for me but if I skip it my lungs feel heavy and gunked up. You win some, you lose some.
Then there are the less tangible concerns. I hate that I have to explain cystic fibrosis to Winnie when she’s old enough to ask questions. I worry how our secure attachment bond would be harmed if I have to go in for a lengthy hospital stay. I feel guilty about long-term ramifications of growing up with a chronically ill parent. I wish my husband didn’t have to ever think about parenting without me.
I have yet to find the perfect balance between self-care and taking care of my family. And yeah, that’s hard. But the more moms I talk to, the more I realize it’s never easy. You don’t need to have cystic fibrosis for motherhood to be complicated. It’s always complicated. And you don’t need perfect genetics or neverending energy or healthy lungs to be a good mom.
I’ve yet to be hospitalized since Winnie’s birth, but I know chances are it’ll come. CF is progressive. I do what I can to stay on top of it with healthy lifestyle choices, but I can't control everything. I’ve been blindsided by lung infections and intestinal blockages before. The difference now is I know that whatever happens — sickness, health, most likely some combo of the two — we’ll find our rhythm as a family.
I’m a mom now; I’ve got this.