Before the food-splattered kitchen floors, overly enthusiastic smiles, and nursery rhymes; before babbling “dadas” or “mamas” filled our living spaces; and before the arrival of my blond-haired, blue-eyed baby-treasure, there was just me.
I am a college graduate sorority girl and an eternal optimist who is constantly sipping my glass-half-full cup of coffee. I enjoy learning about other people’s experiences and being a part of a community. I am also living with the reality of the pills, tubes, and breathing treatments — I have cystic fibrosis.
Once, there was just little old me.
That little old me was a prepubescent girl who realized that becoming “mom” while battling cystic fibrosis was a prospect that might wither away before I could reach out and snatch it. I was sitting in my childhood bedroom skimming through a medical book about CF from the hospital library when I stumbled upon a section detailing reproduction and family planning. The words echoed what I thought I already knew, that becoming a parent with CF was engulfed in the uncertainties of “ifs” and “buts” and “probably nevers.”
At that time, people with CF weren’t living long enough to become mothers, and if we were still alive in adulthood, failing health was inevitable. Besides, parenthood isn’t exactly a logical option when you have a progressive disease. While kids grow up over time, it’s the same span of time that allows a disease like mine to advance to the bad place.
I closed the book, feeling the weight of disappointment in my scrawny 13-year-old body.
Work, work, work
My story continued as I lived out the “first comes love, then comes marriage” classic school-age taunt (kids can be mean). Outwardly, I ascribed to the idea of enjoying “the now,” but secretly, I pursued “our future.” I clung to every percentage point and pound, desperate to stay healthy enough to be the potential of being a mom someday.
Even then, the highs and lows of cystic fibrosis wove themselves in and out of my story. There were difficult decisions and a season of grief as I mourned another piece of normalcy gone because of CF. What was I to do? How was I to ignite hope and practice patience? Positive self-talk and medical compliance toward the larger goal became my footpath in my fight toward motherhood.
I would say to myself:
“You’re not taking this from me. No, not this. You are going to work with me, and we will do this together. Not today, CF. This is my purpose.
“This breathing treatment is for you, future baby. This round of IVs is for you. One day, it will be worth it.”
That “one day” came and I got gloriously fat. Fat, and one step closer to motherhood because I was so very pregnant. (Yay!) We were expecting a little boy. Pregnancy suited me: I felt healthy, my lung function increased, and my CF-body was playing nice for once.
Pregnancy was an amazing experience that taught me so much about myself and my disease. My body was strong and willing to create and deliver a new life even when it could barely sustain itself. You can’t function worth a dime, little old me, but you can deliver a baby in less than four hours like a champion. Phew, talk about a transformation and a Hail Mary! Talk about the greatest gift I ever got.
My story is an honest and redeeming journey of living in the trenches of motherhood while attempting to keep myself (and my sanity) alive and well. I can’t promise perpetual perfect parenting or marvelous increasing lung function. I am still learning to merge my complex disease with relationships, marriage, and motherhood. It hasn’t been easy, and I suspect it won’t get any easier, but it has been joyful.
Welcome to my experience as a modern CF mama in my crazy yet beautiful world. I’m trying my best, hoping for success, and savoring my long-desired reality. I hope you decide to join and embrace the divine in the dirt along with me.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.