“Mom, I think you’ll have to go into the hospital after your trip this fall.” I glanced over at my 10-year-old who was casually eating French fries as we drove home from CF clinic. She likes to attend clinic with me whenever she has the chance. She’s been enthralled with all things related to my health and medical care since she was a toddler.
“Why do you say that?” I asked, already knowing what the answer would be. She’s too smart for her own good sometimes.
“Because your lung function is down. You always feel sick after traveling, and you usually get really sick in the fall or winter anyway. So, during your trip in October, you’ll probably get super sick and need to stay in the hospital.”
See what I mean about being smart?
“It’s a possibility,” I said and forced a smile, “but we’ll hope for the best.”
“Okay,” she said nonchalantly as she dipped another fry in ketchup and placed it in her mouth.
This isn’t what I pictured when I dreamed of being a mom. I imagined being an active participant in my child’s life: chasing her in the front yard, teaching her how to bake, volunteering in the classroom, family dinners, bike rides, and so much more. I thought I’d be the fun mom, the cool mom.
What I didn’t foresee were the difficulties of parenting while also trying to manage the demands of living with CF. I never imagined being too short of breath to carry my baby from the car to the entrance of the grocery store without stopping to catch my breath. I didn’t picture a confused toddler asking me, “Do all mommies live at the hospital sometimes?” I never envisioned being unable to volunteer in her classroom because the risk of exposing myself to germs and viruses was too high. I never would have guessed that by the age of six, my daughter would look me in the eyes and ask, “Mom, can you die from cystic fibrosis?” I didn’t expect to be the “sick” mom, the perpetually tired mom, the too-worn-out-to-cook-tonight mom.
I also never pictured us having such casual conversations about my lung function and potential hospitalizations as we drove home from clinic together. She’s integrated CF into her life in a way that simultaneously breaks my heart and makes me so incredibly proud. Some people think she knows too much and that she’ll be traumatized by the information I share with her about CF. Others commend me for my openness and honesty with her. I know parents who are battling CF and don’t want their child to know any of the details. They want to shield them from the harsh realities of this disease for as long as possible. Others, like me, choose to be upfront and direct, answering all their children’s questions in honest (age appropriate) ways.
To be honest, I don’t think there’s a “right” way to approach these situations. There aren’t any manuals and there’s no such thing as a one-size-fits-all plan for this. I believe that each parent intuitively knows what’s best for their child and how much information their little ones can process. CF has influenced my parenting in numerous ways, but not all of them are negative.
Because of CF, I am acutely aware of the miracle that each new day is.
Because of the weight and magnitude that CF carries, I choose to let go of the little things and focus on the things that really matter. My daughter got too much screen time today? No biggie. We also spent a ton of time snuggling and laughing together.
Because of the toll CF takes on my body, I can’t physically keep up with society’s go-go-go mentality. This means that we spend more time at home together, creating our own fun and enjoying the simple moments.
Because my daughter has consistently seen me make my health and well-being a priority, she has learned the importance of self-care.
Being raised by a parent with chronic illness has instilled the values of empathy and compassion in my daughter. She understands that people can be experiencing pain or trials that we can’t see, so she is quick to help those who are struggling or lend an ear to someone who needs to talk.
Embracing the positives and providing a safe place for her to discuss her worries and fears has helped us cope with this disease together. It’s possible to build and maintain a sense of stability, joy, and balance in the midst of chaos and uncertainty. While I would never say that CF has made me a better parent or that it has improved our lives, I do think that navigating the rough waters of life with CF has brought my daughter and I closer together.
Parenthood doesn’t look like what I once envisioned, and I’m not the picture-perfect mom I hoped to be. Sometimes we’ll eat cereal for dinner because it’s easier than cooking. Sometimes we’ll stay at home and read instead of going to the pool. I may never meet my own expectations of what an ideal mom should be, but I have never failed to meet my daughter’s needs.
Inevitably, I’ll be hospitalized again. I’ll continue to face CF related complications. My daughter will get older and at some point, I’ll be thrown into the world of parenting a teenager: dating, friend drama, getting a driver’s license, and more (which will probably be more terrifying than anything I’ve faced regarding my health). Life will continue to throw curve balls and ruin my plans, but I’ve learned that it’s okay. We’ll adapt. CF isn’t the only, or maybe even the most significant challenge we’ll face together, but because of the lessons it has taught us, I don’t believe any challenge is insurmountable.
CF may not make me a better parent, but perhaps it does make me a stronger one.
About the Author: Jenny Livingston lives in Utah with her daughter, fiancé, two dogs, a horse, and a hedgehog. Since both of her older sisters also had CF, Jenny was immediately tested and diagnosed at birth. She is passionate about raising funds and awareness for cystic fibrosis. Jenny was chosen as a recipient of the Vertex All in For CF Scholarship twice and recently graduated with a bachelor’s degree in psychology. She writes about motherhood, living with cystic fibrosis, mental health, and more on her blog Lungs N’ Roses and she can be found on Instagram @jenny_livingston.