Growing up with cystic fibrosis, I was no stranger to the balancing act of juggling the many responsibilities that come with living with a chronic illness. As soon as I stepped into the season of motherhood, I knew that prioritizing my physical and mental health would prove to be more important than ever. But between diaper changes and late-night feedings, how could I take practical steps to ensure my own needs were met while also taking care of my precious family? Rather than treating my health as a luxury that can only be prioritized on days when the baby naps, I’ve come to view it as a daily commitment to myself and my family. Little by little, daily choices add up to a lifetime of health and happiness, and it all starts in the messy in-between.
My daughters have had front-row seats to my illness from day one. Whenever I would cough, I’d feel the familiar pregnancy flutters as they stretched and kicked against my growing belly in response. As newborns, they both learned to sleep peacefully in my arms while my breathing treatments vibrated and hummed a comforting lullaby. Now as toddlers, my daughters have gracefully and willingly accepted the role of mommy’s little helpers. Little hands regularly place new stickers on my nebulizer machine, and sweet little voices remind me to take my medicine. My yoga mat holds space for three pairs of feet.
I’ve realized the secret of my success has always been to invite my daughters into my space and let them be fully present with me in the moments I’m at my most vulnerable. Our world doesn’t stop when I need to take care of my physical health.
I homeschool and play with my girls while doing my treatments. On days when I’m particularly sick, we all cuddle up. We watch a lot of movies, eat a lot of snacks, and enjoy one another’s company. They bring out their toy doctor kits and check my temperature, listen to my heart, scribble notes, and prescribe rest and snuggles.
When my days seem to revolve around seemingly endless pills, treatments, appointments, phone calls, and bills, it’s no surprise when the weight of it all starts to feel too heavy to carry. Cystic fibrosis is a very real part of me, but it doesn’t have to completely define my identity. Having passions apart from the world of chronic illness helps lighten my load and serves as an example for my daughters. While watching me, a tiny seed is planted in their hearts that they, too, can pursue their dreams despite what hurdles may come.
I enjoy writing, reading, photography, and nature study among so many other things. I love finding ways to turn every day into an adventure. Getting outdoors with my family has done wonders for both my physical and mental health. There’s no medicine quite like the sound of my daughters playing, the warmth of fresh sunshine, and the colors of a painted sunset sky. I breathe in the fresh air as deep as I possibly can. I carry my youngest little girl on my back and hold hands with my oldest as we hike, camp, and explore the beautiful world we live in. It doesn’t take much -- even just a walk in my backyard has a way of rooting me back down to what truly matters. Stepping away from mindless scrolling and the need to constantly hustle has allowed me to fall in love with my own life. I’m able to put the blinders on and be fully present with the people right in front of me. When I start intentionally investing in my own life, my body and mind both reap the benefits.
When I first became a mother, the guilt of not parenting like a “normal” parent set in quickly. Living with a chronic illness certainly isn’t glamorous. My life isn’t “Pinterest-worthy” -- my house isn’t a page out of a magazine, and there are days when all the best I can do is sit on the sidelines. On those days, I have to remind myself that it’s OK to rest. It’s OK to carve extra time out of my day to prioritize my health. It’s OK if our days look different from the little squares on social media. I’m learning to celebrate the little victories along the way and let go of the comparison trap. What matters is that my girls are well taken care of and they’re happy. My girls cuddling up with me, smiling and content -- that’s where my worth as a parent lies.
To fight for my mental health, I have emphasized an overwhelming sense of gratitude for my life. There is no better way to declare victory over fear and discouragement.
As a professional patient, I’ve come to truly appreciate the magic in the little moments of life. I’ve learned to cherish things that are overlooked as being ordinary and mundane by most people, because I know what it feels like to live without them.
When I’m sick, I don’t miss the big moments as much as I miss all the little moments -- my little girl’s face lighting up as she holds her first sparkler, my youngest girl singing her heart out in her car seat, holding hands at the dinner table with my husband, or watching the glowing embers of a backyard campfire. These are the moments I want to bottle up and pour out on days when life is difficult. Each night after I’ve read just one more story and tucked my girls into bed, I make a list of what I want to remember from that day. Even on my darkest days, I’ve always been able to find a spark of light to record and treasure.
Cystic fibrosis is woven not only into the tapestry of my life but the lives of my daughters as well. When I commit to prioritizing my physical and mental health, it creates a beautiful ripple effect through each of us. Every time I finish a breathing treatment, they’re learning a valuable lesson in endurance, obedience, and self-worth. Every time they see me struggling and decide to offer a helping hand, they’re practicing empathy. Every time cystic fibrosis doesn’t get the final say, they’re developing the blueprint of how to overcome their own hurdles. I’ve learned to sew a picture of grace, strength, and resilience with the thread of chronic illness with the help of my little girls. Seeing my illness through their eyes has shown me how to embrace the beauty in my struggles and find the hope in each day.
In the thick of motherhood, I’m learning how to go with the ebb and flow. Every day is different and comes with a new set of distractions and challenges. But when I value my physical and mental health, I’m essentially putting on my own oxygen mask to ensure I can – in turn – be the best mother I can be to my little girls. I’m reminded that time is the ultimate currency – more time to snuggle in for story time, more time to hear, “I love you, mama,” and more time to watch them one day walk down the aisle.
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