Behind my excitement is the quiet fear that my grandchild will be a CF carrier

I turned 55 this month, and I am giddy about it. Not quietly pleased. Not gracefully accepting. Giddy, the way you’re supposed to be at 21 and rarely are, because you don’t yet know what a gift a birthday can be.

I know because I’ve spent almost six years breathing with someone else’s lungs, and every candle since then has felt like a marvelous miracle. I’ll take 55 standing up and shouting.

On top of that, I will become a grandmother this fall! I have dreamt of this moment for years, and now that it’s within reach, I feel something close to euphoria. I want to tell strangers at the grocery store and buy all the tiny shoes I see. This is pure joy, and I am letting myself have all of it, loudly and without apology.

But underneath the shouting, cystic fibrosis (CF) families hear a low background hum that can’t be fully quieted. Will this disease be passed on?

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I don’t let myself focus too much on that noise. After living with CF for half a century, hope is not a soft thing — it’s a muscle I’m afraid to overuse, in case it fails me. I’ve learned instead to plan around exacerbations, denied insurance claims, and the particular grief of feeling my own lungs turn against me. So even in the midst of all this celebrating, part of me holds the future carefully — the way you hold hope for an outdoor wedding, knowing the sky owes you nothing.

My daughter is a CF carrier, but her husband tested clear. Their child cannot have CF, so that fear is retired, and I’ve exhaled in relief more than once. What remains is smaller and quieter, especially as I have two rare mutations ineligible for modulators: the chance the baby, too, becomes a silent carrier, a keeper of a gene that may never speak but never leaves, either.

I have run those odds more times than I’d like to confess. But beneath the math lives a hope I’m only now brave enough to name aloud: that this baby is the place the river stops. That the disease my mother watched hollow out my body, that I watched hollow out my own, and that my daughter’s life has been shaped by, might have nowhere left to go. Not because we cured it or outsmarted it, but because just this once, the coin flip might come down kind.

My mother has spent more than 50 years afraid for me. She has been there through nights at the hospital, transplant waiting rooms, and bank statements that read like casualty reports, and still watched me build a life out of what was left. My daughter learned to pound my chest for airway clearance before she was old enough to spell the disease she was helping treat. We have all, in our own rooms, grown tired of the same thing.

So, yes, I hope this new baby carries none of it onward, and that my grandchild grows up never needing to know the terms “sweat test,” “FEV1,” or “prior authorization.” That the fear my family has lived with for three generations stops here and is not lifted onto a fourth pair of shoulders.

In my heart of hearts, I am OK being the only one who had to endure CF physically. My prayer is that none of my grandchildren or great-grandchildren will end up with this disease. I am strong enough to endure it if everyone else can be spared from having it.

If my prayer is answered, it won’t be luck alone carrying it. It will be decades of research, of trials endured by strangers, of scientists and advocates and CF families like mine who kept pushing long after pushing seemed reasonable. But I’ll call it luck anyway. After everything we’ve endured, I think we deserve that word.

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.