It was December 2002, Christmas break. My son, Nathan, was 7, and the lights blinking across the living room haloed his skinny frame. Stomping in, he planted his fists on his hips, nailed his feet into the floor, and asked, “Mommy, how come you’re the only one in this family who’s never on vacation?” 

His question hung thick in the air — piercing, suffocating almost. My son, a powerful communicator since age 2, had named what I had been experiencing but never spoken. He was right. One-hundred percent right. 

The Early Years 

From birth to age 3, Nathan’s body was a battlefield. His lungs were fertile soil for infection, repeatedly ravaged by relentless respiratory illnesses. The doctor’s office was our second home. His lullabies were the sounds of taking the caps off antibiotic bottles and albuterol, the hum of the nebulizer, and me pummeling his back and chest with self-taught percussion therapy. 

Food betrayed him, too. Even breast milk heaved from his body. Per the pediatrician’s orders, I stripped my diet down to yogurt, fruit, and salads without dressing to make better, more tolerable milk for my underweight baby. But “colic” clung to him like a dark shadow. 

I remember one day the cupboards were bare. Nathan, not yet 3, asked for juice and I answered, broken and ashamed, "No love. We do not have any." “What do you have?” he asked softly. “Milk, water, and crackers” I said. 

That day, with Nathan in tow, I sold my one materialistic possession — a gold and amethyst ring — for $17. He needed more nourishment than milk (which only made him sicker), water, and crackers. In moments like those, isolation pressed in as heavily as hunger. 

Before this, I had quit my banking job to care for Nathan, and in reluctant desperation, I applied for food stamps. Despite all the paperwork I presented, denial came as swiftly as a guillotine slice. “You do not qualify. Your husband’s earnings exceed the cutoff by one dollar.”

For nearly two decades, Nathan and his brother, Caleb, lived with classic cystic fibrosis symptoms that doctors dismissed as “just asthma,” “just allergies,” and “just in your head.” My sons’ coughs cried, their lungs labored, their bodies broke, and their spirits struggled, but the system looked away. 

Finally, in 2014, just months before their 19th and 15th birthdays, they were finally diagnosed with cystic fibrosis. 

Breakthroughs Withheld 

In 2019, both of my sons qualified for and obtained Trikafta. As of October 2025, Nathan has gone without it for 13 months, and Caleb for two months. Insurance denials, bureaucratic tangles, and the cruel calculus of coverage have stolen their access to drugs that are priced out of reach. 

How many moments should they lose to tight chests and low oxygen? How many moments should be lost to pain, labored breathing, and the terrifying sight of blood when hemoptysis sets in? How many to pancreatic insufficiency’s constant pain and malnutrition? How many to hospital stays that last weeks at a time? Should their life expectancies be lower than anyone else’s? 

As their mom, I rejoice for the breakthroughs — the modulators that can improve lives for 94% of CF patients in the U.S. — even as I grieve the wicked withholding of it to those who need them. 

Even as breakthroughs arrived, I remained the one never on vacation — still carrying, still fighting. 

The Weight of Caregiving 

No parent should ever bear these struggles. 

I emptied my retirement accounts to move my boys near the salty ocean air and a CF center just a nine-minute drive away, in a new state, only to find myself continuing to fight financial challenges. And, for 30 years now, I have been on duty (not on call), caring for my sons while working, studying, cooking, cleaning, nursing, fighting, and reworking my budget when it collapses due to mounting bills. 

Nathan’s childhood declaration echoes still. I was never on vacation. Because caregiving for a chronically ill child is not a 9-to-5 job, not a role you clock out of. Rather, it is a constant battle against perpetually rising tides and raging tsunamis. It is a life lived in tireless sacrifice, in vigilance, in love. 

Nathan asked me recently, “So, do you regret having us?” 

“No, love. You’re my greatest gifts. I could never regret having you. I only regret not being able to relieve you both of this relentless suffering.”

Our story is not about medicine. It is about justice. 

Should two young men watch others have the dream of normal lifespans while they suffocate in a system that diagnosed them too late, then stripped their care away? Should parents empty their savings to give their children a better chance of breathing, only to have both bank and breath wash away?  Should anybody endure these injustices? 

Holding On to Peace While Fighting for Justice 

Growing older with cystic fibrosis should not be a luxury item. Yet here we are, watching my sons fight for access to care that exists, but remains locked behind the gates of insurance and inequity. 

Nathan and Caleb are not the only ones.

Progress means nothing if it does not reach everyone. Treatment that reaches some is not treatment. Access granted to some is not access.

After recently reuniting with Nathan and Caleb’s original CF care team at the North American CF Conference in Seattle and meeting numerous CF doctors, researchers, and advocates, my sons’ insurance denials have found a new voice and gained renewed support. Together with Compass, Caleb’s care team, and others who have offered provide care without insurance, we can once again see a pathway to access.

Still, on behalf of every cystic fibrosis patient and every family denied the fullness of life, I ask: Will our government and those with the power to enact justice help us close the gaps and give a breath of fresh air to all?

When we have modulators that can extend the lives of our loved ones and choose not to give access to those who need them, we fracture our shared humanity.

And yet, even as I fight for justice, I hold onto the peace of knowing my sons are my greatest gifts. Nathan’s childhood declaration — that I was never on vacation — still echoes, but so does my answer to his recent question: “You’re my greatest gifts. I could never regret having you. I only regret not being able to relieve you both of this relentless suffering.”

This is the miracle and the weight of breathing, the reckoning of caregiving, the still fragile peace I hold, and the demand we must all carry — that no family should be denied decades of life when the medicine exists, and that justice must open the gates so every person with CF can inhale and exhale the fullness of life and grow old.

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