There are moments when I look at my family, realize I’m middle aged, and remember all too well that my lungs have tried to kill me on more than one occasion. I’m a mom first, but living with cystic fibrosis is my other full-time job; it has shaped who I am and how my husband, Mike, and I parent. I am 46 and have had two double-lung transplants in the last six years. I know what it’s like to have to prepare my children for the worst while encouraging them to hope for the best. And yet, somehow, in typical CF-warrior fashion, I’ve pulled through — because here I am. I’m still parenting my 12- and 16-year-olds. I’m still breathing.
I was born in 1979 and diagnosed with cystic fibrosis a year later. Any adult with CF will understand what it is like to surpass your life expectancy more than once. Somehow, even as a young child, I was able to put the statistics aside and assume that I would have a “normal” life. I knew I would leave my small hometown and go to college. I also knew in my heart that I would someday be a mom. I am grateful that these dreams have come true, but it hasn’t been without a healthy dose of love, support, and that CF grit. I guess you could say I didn’t become a mom despite CF; I became a mom with CF. Here is a little of what I’ve learned over my 16 years of parenting with a chronic illness.
Through the help of fertility treatment, I had my first-born daughter, Josie, in 2009. When I think of that first year of her life, I picture it in my mind as being shrouded in a warm, golden glow. Everything about Josie was perfect, and in turn, I wanted to be perfect for her. I read all the books, made her homemade baby food, swaddled her just right for a cozy night’s rest. I felt I was doing it; I had it handled. As she got older, everything got busier. Suddenly, my docile baby was in dance and gymnastics. She was running around — which meant I was running around.
In 2012, we had our son, Oliver, and everything got even busier. I now had this toddler with toddler demands and an infant with infant demands. It was typical young-family stuff, except I was doing it with 50% lung function. So what did all this mean? It meant real choices and sacrifices had to be made. My career got put on hold — because how could I do it all? Parenting is a full-time job. CF is too. How could I fit in another full-time job? This was a difficult decision for me. I had gone to college and gotten a master’s degree. So much of my identity was wrapped up in academic achievement and being this strong, educated woman. It wasn’t easy to set that aside and become a stay-at-home mom and CF patient. This was my first lesson: figuring out my identity sans career. And that meant embracing the fact that I am, indeed, not “normal” — a truth I had been denying my entire life.
In 2018, my kids were 9 and 6, and it was clear that my lungs were deteriorating. Suddenly, I found myself on oxygen when I exercised, and then overnight, and then around the clock. At that point, I got evaluated for transplant and put on the list. As soon as I was approved for transplant, I took a minute to cry, and then my thoughts immediately went to my husband and children. They had all witnessed my numerous exacerbations and hospitalizations throughout the years, but that was nothing compared to this. My CF exacerbations were so predictable: Mom gets sick, Mom goes to the hospital for a few days until her antibiotic levels are just right, Mom gets discharged and finishes IVs at home — life goes on. This, however, was no exacerbation. Transplant tapped into my deepest fears and anxieties, and likewise, my family’s.
This provoked deep discussions between Mike and me about how we were going to approach this with Josie and Oliver. It was so much to hold. We really had to figure out a way to balance our own anxiety with theirs. How do we keep things light and hopeful and full of grace and gratitude, while also holding space for real worry? How do we validate their feelings while acknowledging and being true to our own?
This was my second lesson: honesty is the best policy. When the kids asked questions, we answered them on their level with pure honesty. Trying to hide what was going on wasn’t going to work. I was going everywhere with an oxygen concentrator on my back and a tube on my face. There was nothing to hide, and I’ve learned that kids do best when you can talk to them like real people and truly validate their feelings, especially around the hard stuff. It’s easy to tell a child to “stay positive” and “don’t let it affect you,” when clearly, the thought of your mother going through a 12-hour lung transplant procedure is terrifying.
So, I adopted a mantra. When the kids felt scared, I’d rub their backs and say, “Mom is here now, and everything is okay.” It helped to stay in the present so they didn’t catastrophize about the future. And it helped me stay grounded so I could be strong for them. I think as parents we always want things to be happy and fun. We want all the times to be good times, and we want to shield our kids from the hard stuff. But as we all know, life doesn’t work that way.
Allowing the worry and fear to be expressed brought it out into the open for us and became something we could talk about and work with. It’s sort of like being afraid of a shadow on the wall, only to turn the lights on and see it’s nothing but a tree.
If I’m being honest, my first transplant was pretty straightforward. The surgery went well, I was home in 12 days, and my lung function reached 115%! After 40 years with junky CF lungs (bless those lungs), my new lungs felt like a medical miracle. I got three years out of those perfect lungs until my immune system turned on them, and I found myself back on oxygen.
Three years later, in 2022, I went into organ rejection and was put on the list for a second transplant. My second transplant, however, was not as straightforward. In May 2022, I was admitted through the emergency department and told that I would not be going home until I got new lungs. This was going to be a waiting game, and each day felt harder than the day before. I was eventually put on ECMO and then put into a medically induced coma for two months while we waited.
Believe it or not, when I woke up, I didn’t know what month it was, but I had new lungs! I stayed in that hospital for a full six months, moving from unit to unit. I went from the very high-risk ICU to the ICU to a regular pulmonary unit, then back to the ICU for various reasons. I had a tracheotomy and was put on a ventilator. Despite all of this, the only thing I thought about beyond my own survival was my family. At this point, Josie and Oliver were 13 and 10, and all of a sudden, I was no longer in control.
This is when I learned lesson number three: it’s okay to ask for help. Here is where those wedding vows got put to the test. Mike suddenly found himself taking on the roles of both mom and dad. He worked full-time, drove the kids to school each day, helped with homework, and figured out how to cook actual meals. And when our amazing community set up a meal train for our family, Mike said yes, even when everything in him probably wanted to say, “I’ve got this.” But here’s the thing people don’t always see: the mental load he carried was staggering. There’s a quiet kind of heroism in that — the strength it takes to hold a family together during prolonged crisis without falling apart yourself. He didn’t have the luxury of falling apart. He had to wake up every day and do it all again, no matter how scared or tired he was.
When I ask him about how he got through it, he’ll joke that he compartmentalized it all like a man. But there’s a truth in that. As parents, we can’t always wallow in the hardship. We have to find some levity. When the kids would come to visit me in the hospital, I’d let them draw on my whiteboard and glass bathroom doors. They’d ride the bed up and down and drink the extra Cokes I’d order for them from the kitchen. We splurged on a laundry service just so Mike could have one less chore. Am I a little particular about how I wash my clothes? Yes. Are they just clothes? Yes. Releasing control and finding balance became the new norm, and truthfully not much has changed.
When I look back over the last 16 years, I might not have been the mom who made the cupcakes or put my kids in travel sports. I didn’t join the PTA. I had a nanny for a few years when my health was declining. This isn’t what I envisioned for myself as a mother, but it was what was needed so I could show up for Josie and Oliver as my best self and with love, which was most important.
During my time in Boston I had two amazing doctors who each gave me a nugget of advice I still hold in my heart. One said to me, “Jane, it’s hard to be perfect in an imperfect world.” Facts. When I had Josie, I remember my other doctor telling me, “Jane, it’s okay. In the end they kind of raise themselves.” His wife was also a doctor, and he admitted that he’d paid for a car service to get his kids to their after-school activities. He laughed when he told me that for the first half hour after school, he didn’t exactly know where his kids were, and he just had to “give it up to God.” I still laugh thinking about that, because isn’t that the truth?
Josie and Oliver have grown up with a front-row seat to resilience, vulnerability, and unconditional love. They’ve seen tubes and oxygen tanks, but they’ve also seen strength and laughter and honesty.
I used to worry about what I couldn’t give them — the cupcakes, the carpools, the perfectly curated childhood. But now I see clearly what they did get: a mother who shows up with her whole heart, even when her body can’t.
They’ve learned compassion, flexibility, independence, and how to find joy in the messiness of life.
If parenting is about preparing your children to navigate the world with empathy and courage, then I think I’ve done okay. CF may shape how I parent, but it will never limit how deeply I love. And at the end of the day, that’s what they’ll remember most.
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