Parenting on Borrowed Time: A Tale of Love, Hope, and Fashion

I have cystic fibrosis, a chronic and incurable disease. Despite the challenges it brings, I have no regrets about becoming a parent. However, I am acutely aware that I am parenting with a sense of urgency, acknowledging the limited time I have given the nature of my condition.

Living with cystic fibrosis, I cherish my role as a parent despite the constant reminder of my limited time.

Image: Mom holding two boys
Courtesy of the author

At age 27, my journey into motherhood began with the indignant cries of my newborn son. He was a tiny bundle of anger and perfection, and in that instant, I knew I loved him with all my heart. But amidst his wails, a different sound resonated within me – the ticking of a metaphysical clock. Tick. Tick. Tick.

You see, I had been diagnosed with cystic fibrosis at the tender age of 5. Back in 1990, when I was born, life expectancy for this rare disease was only in the mid-20s. Career aspirations, higher education, and parenthood were distant dreams for most with CF. Merely entering adulthood was cause for celebration. Unfortunately, many succumbed to the relentless grasp of this condition.

Cystic fibrosis wreaks havoc on the body, filling the lungs and digestive tract with thick, sticky mucus. Daily routines included hours of airway clearance, swallowing upwards of 50 pills, and enduring weeks of intense IV antibiotics. It felt like my body was barely hanging on, until a breakthrough in gene-altering medications offered the promise of longevity and normalcy.

I remember the day I heard the news, holding my already two-year-old son in my arms as tears streamed down my face. It was a moment of triumph, knowing that the future might be kinder to me than I had ever imagined.

Now, you might wonder, why would anyone choose to have children when faced with such a short life expectancy? It’s a valid question, one that has consumed my thoughts time and again. But my answer is simple – love. Love has a way of blurring logic and guiding us towards unfathomable acts of bravery.

And so, armed with hope and love, I took the leap of faith to share my life with my children. The risks were great, but the rewards even greater. Not a single second of regret has crossed my mind.

Yet, reality often takes a toll. My son, with his freckled face and inquisitive ocean eyes, poses me the toughest of questions. “Mommy, will you die from your cystic fibrosis if we don’t pluck it out of you?” His understanding of DNA is remarkable for a young boy.

I catch my breath and reply, “If Mommy takes her treatments and special pills, she will stay healthy. But remember, everyone eventually passes away. Our bodies are not meant to live forever.” Holding back my fears, I push his younger brother in the stroller.

What my boys cannot comprehend are the thoughts that race through my mind. I wasn’t meant to live, and yet, here I am. You weren’t supposed to exist, and yet, here you are. Cystic fibrosis cares little for my desires, but I care deeply for you.

As a mother, I strive to shield my children from the harsh realities that lay before us. I don’t want to fill my 5-year-old’s mind with fears as he rides his bike through the neighborhood. Like any parent, I long for undisturbed sleep, free from visits by monsters or existential crises.

So, I offer my sons a half-truth, praying for its truthfulness. It is a truth wrapped in hope, gratitude, and the resilient spirit they will gain from their experiences with me as their mom.

Deep within me, the grief remains tucked away, hidden from their world. It lurks in the corners of my heart, waiting for its next appearance. Tick. Tick. Tick.

This is the reality of parenting on borrowed time. There’s no instruction manual to follow, no certainty to rely on. I exist in a realm between hope and uncertainty, oscillating between the dreams of witnessing my child’s graduation and the hazy fog of stolen breaths. It is a disorienting place where I struggle to see the future, myself, and even my children. Yet, within this disarray, terror lurks.

I hover, unable to find solid ground, placing my faith in love and scientific progress. It is the hope that love, intertwined with fashion and the latest breakthroughs, will carry me through.

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