I have cystic fibrosis. I don't regret having children, but I'm parenting on borrowed time with a disease with no cure.

• I was diagnosed with cystic fibrosis when I was 5 years old.
• I became a mom for the first time at 27 and could feel a clock ticking in my head.

At age 27, my world of motherhood was set into orbit, accompanied by the scream of a tiny infant presented between my legs. He was angry and perfect, and I loved him instantly.

In the background of his furious life-affirming shrieks, the winding of a metaphysical clock could be heard by no one but me. Tick. Tick. Tick.

I had been diagnosed with cystic fibrosis at age 5 and had been living with it since.

There was no future with cystic fibrosis

When I was born in 1990, a year after the gene for cystic fibrosis — or CF — was discovered by geneticist Lap-Chee Tsui, life expectancy for my rare disease was only in the mid-20s. Most individuals with CF didn't go to college, have careers, or become parents. Tiptoeing beyond the threshold of childhood was considered a success.

Unfortunately, many failed.

CF is a disease that causes thick, sticky mucus to build up in the lungs and digestive tract, damaging the organs beyond repair. Hours of daily airway clearance, upwards of 50 pills a day, and weeks of strong IV antibiotics kept my body (barely) working. It wasn't until a major breakthrough in gene-altering medications a few years ago, that longevity and normalcy were possibilities.

At the news, I sobbed, holding my already 2-year-old.

I don't regret having children

Some might ask, "Why have kids at all with such a short life expectancy?" I get it. It's a valid question — one I have muddled over obsessively in my head. My only answer is to respond with a question in return, "What single force makes us humans act in all sorts of unimaginable ways?"

The answer: Love. A love not distorted by reason.

I had hope, and I had love — enough to steer me toward risking my life to share it with my ensuing children. Big risk equals bigger reward. And I don't regret it for one single second.

My son asks the hard questions

"Mommy, will you die from your cystic fibrosis if we don't pluck it out of you?" a freckled ocean-eyed boy asks in my direction. His comprehension of DNA is impressive.

"If Mommy takes her treatments and special pills, she will continue to be healthy. Eventually, everyone dies. Our bodies aren't meant to live forever," I say, catching my breath with forced conviction, pushing his 1-year-old brother up the street.

What my boys don't hear are the thoughts running through my head. I wasn't meant to live, but here I am. You weren't supposed to be possible, but here you are. Cystic fibrosis doesn't care about what I want, but I care about you.

I will craft a narrative to protect my sons

I don't want to scare the crap out of my 5-year-old riding his bike up our street. Like all parents, tonight I choose uninterrupted sleep without visits from monsters and sinister dark, especially existential crises.

Therefore, I give my sons a half-truth, praying it to be true. The one wrapped in hope, gratitude, and the assuming resilience they will gain from their lived experiences with me as their mom.

Deep and gnawing, the grief I feel during moments like this, I keep for myself tucked away, safe from their world. Intimately folded up, waiting for its next appearance, but resolute in the home in my heart. Tick. Tick. Tick.

Parenting between hope and reality

This is what it's like to parent on borrowed time. With no manual to follow, my heart is committed to being their mom to infinity, but my body lacks the necessary certitude.

I float between two fixed points. One is hopeful images most parents take for granted, such as their high school graduate stepping into their embrace. And the other, images so clouded by the haze of foggy stolen breath that I'm lost. I can't see the subject. I can't see them, and I can't see myself. However, I know I am terrified. Here, I am disoriented waiting for new innovations and treatments to be my guide.

As a parent with a rare incurable genetic disease, I have no choice but to remain hovering. Unable to settle on solid ground, all I have is the hope that love and science will eventually carry me through.