Finding balance and identity as a cystic fibrosis mom

Even though I already had one child when my daughter, Claire, was born, her birth was a pivotal moment in my life. I wasn’t just a mom anymore; I was a cystic fibrosis (CF) mom. With that title comes a lot of responsibility and weight. For me, it also brought a lot of change. My perspective and priorities shifted in an instant.

Two eras of motherhood

I think of my motherhood journey in two parts: before Claire and after. We had our son about two years before her arrival. During those two years, my husband and I didn’t change much about our lives besides having a tiny plus-one attached to our hips and plans. Both of us still worked full-time, high-stress jobs. We were apt to visit breweries, travel abroad, and see friends regularly. We had our own interests and hobbies and the time to enjoy them.

All of that changed when Claire arrived. After a rough stay in the neonatal intensive care unit, our world became a lot smaller and I entered a different era of motherhood.

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I threw myself into learning as much as I could about her disease and how to care for her. The learning curve was steep and it completely consumed me. Work, friends, family, and even my marriage took a second seat to my new role. Being a cystic fibrosis mom became the biggest and most important piece of my identity, because Claire’s survival depended on it — or, at least, that’s what I thought.

I didn’t start coming out of that intense fog of learning and processing the diagnosis until Claire was about 1 year old. This coincided with starting to write about my journey and becoming active on social media. Soon, I was surrounded by new information and relationships. I fell in love with connecting with people who understood our journey. It brought me comfort during a time when I really needed it.

Am I more than a cystic fibrosis mom?

I’ve spent much of the last five years advocating, fundraising, and caregiving. There weren’t many days when I didn’t consider ways to get more involved, informed, and inspired. I think it’s natural to gravitate toward these things when your child is born with a rare disease. You start forming connections and shaping your identity in hopes that those things will carry you through an arduous path. And that is great. Having a sense of community is imperative to a caregiver’s survival.

But I am always working on making my life more balanced, and being that involved was shifting the equilibrium of my days. Another CF mom once shared with me how important it is for your life to not revolve around the disease. Because of that, I want to stay connected, but I also want to make more space for things that don’t relate to cystic fibrosis. That’s not so easy to do in reality, but I’m noticing a natural progression away from CF being center stage in our family.

As Claire gets older and remains relatively healthy, I find her disease to be less pervasive in a way. That’s partly because we have grown accustomed to our routine and CF’s demands. Her care is just another part of our day now, like brushing teeth. Multiple-hour doctor visits are our norm. I don’t dread these as much as I did in the earlier days. Because cystic fibrosis takes up less space in my brain, I am able to have more time for work, interests, and relationships.

Another piece is that our world is naturally getting bigger. Claire goes to school full time now. I have more opportunities for relationships with other parents of typical children her age. Yet, I purposefully don’t lead with telling them that my child has cystic fibrosis. It’s important for others to get to know us as a family before introducing them to that detail of our lives. And that’s what cystic fibrosis feels like: a small piece of who we are as a family and who I am as a person.

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.