Jen Cogliano shares her experience parenting while living with cystic fibrosis (CF), from managing daily treatments and hospital stays to talking openly with her daughter about life with a chronic lung disease. She reflects on age-appropriate honesty and the strength found in showing up with presence, resilience, and love.
Transcript
My name is Jen Cogliano. I live with cystic fibrosis. I am 54 years old and I live in Pennsylvania, about an hour west of Philadelphia. While my daughter was growing up, balancing my health needs with also parenthood and being a mother, I got really good at multitasking. But I was also out in the open with my daughter.
With my breathing treatments or my chest PT, or exercising or doing all of them at once. And I would talk to her pretty much just age appropriate. And if she would come to me and ask a question, maybe what my breathing machine was doing, what does this help you do? And I would say, “It makes Mommy cough less, you know, helps me not cough so much.” And that’s where I would stop the answer.
Just try to meet her where she was at in her question, at whatever age level she was. And it seemed to just satisfy, you know, the curiosity of the moment and then move on. It wasn’t really until she was getting older than middle school, high school that it started to click with her like, oh, I’m seeing other friends’ parents now. And, you know, sleepovers. And no one else is doing this.
You know, our discussions would become a little more in-depth. But still, I chose to kind of go the route that my mom had chose with me and not put out, you know, that it’s a fatal disease because it really — you really don’t know what’s going to happen. Every case is different. And I didn’t want mentally for us to get stuck in the trauma of what could happen.
And we would face it when it happened. But if it wasn’t happening in that moment, I wasn’t going to bring it up and talk about it and put fears into her mind. The thing that we ended up doing as a mother and daughter was with CF, I told her, “I will tell you when to worry, and it’s not right now.” Like, this is just living with CF. I have to do these things, these treatments. Or I might need more rest. Or maybe I go into the hospital, You know, for a few days or a week and then come home on IVs. Like, this is what CF is.
And it seemed to be the thing that, you know, got her through all of her school years and, and even to this day we still use that. So as the decline happened, my hospitalizations were getting more or home IVs were getting more frequent. You know, my breathing was getting more labored and short of breath.
And eventually, in my 40s, to get on oxygen was really the turning point of having a deeper discussion of, you know, things are happening. But, you know, we did. And when she got older as probably high school into college, that, you know, I missed her college graduation for a bachelor’s degree. I was in the ICU for 30 days. You know, when we really started to have tougher discussions.
Advice that I’d give anyone else with CF that wants to become a parent is really, that it can be done. I would say, it’s vital to take the best care of yourself that you can. Although cystic fibrosis is a difficult disease, you know, and it does affect your children. The main thing is that they just want you there.
If I’m doing a nebulizer, it doesn’t matter, you know, if I’m even doing home IVs, it’s OK. Through all these things. It’s just taking care of yourself as best you can. To just be there in whatever capacity that is, is the most important thing.
But otherwise, I will say it’s probably been the most motivational thing for me to take care of myself is, to have a child and a dependent and be a role model and show her, you know, no matter what, adversity, you know, in life that you could try to meet it and exceed any expectations.
