Coming of Age Stories

Uncommon Lungs: Beyond the Episode

Image of Tara, a cystic fibrosis patient Image of Tara, a cystic fibrosis patient

Growing up with cystic fibrosis (CF), each moment can feel like a blessing. Tara shares how she found support in her community throughout pivotal moments in her life, moved across an ocean for love, and built a life she never imagined possible.

Remember, everyone’s experience with CF is different. It’s important to work with your care team to navigate your specific needs throughout different stages of your life.

How did your family navigate your CF diagnosis early on?

I was diagnosed with cystic fibrosis when I was six months old. Obviously I don't ever remember a life without CF. It's been a part of who I am and for as long as I can remember. But when my parents were given that diagnosis they didn't really know what my future looked like or what they could predict. And at that point, my parents did one of two things: they firstly got involved with the CF community. They wanted not only to raise awareness and try to do whatever they could to help, but it also meant that they had other people they can lean on and talk to and share stories with.

 

And the other thing that they did which I'm forever grateful for, and I think has really determined how I've lived the rest of my life is that, although they accepted and obviously knew that the diagnosis was real and that CF was something I would face, they also decided that they wouldn't let it define me. That they would still encourage me to live a life as normal as possible, as I could, and that they would encourage me and champion me to do that throughout my entire life.

 

Did your sense of community have a big impact on you as you grew up?

I'm from a small town, and so I think everyone already knew that CF was a part of my life before I even had to say it verbally. Because my parents were so involved in the CF community, and then I was involved with the CF community. It was just kind of a part of who I was. And that helped me, I think, in a lot of ways, more than I probably realized early on. I think when you're younger…it's not something that you want to talk about and it's not something that you want to actually admit to. But because people knew that I had CF, especially my friends, my family, those closest to me, they were able to be a really pivotal and crucial support group for me.

 

Elementary, middle school, I was kind of your normal ordinary preteen, and then I got to high school and the complications of cystic fibrosis became very real. I had to have a liver and pancreas transplant due to the complications of CF. And because I had such a great, strong support group of friends and family beside me, they helped me get through that really challenging and hard time in my life.

Image of Tara, a cystic fibrosis patient

“I think when you're younger…it's not something that you want to talk about and it's not something that you want to actually admit to. But because people knew that I had CF, especially my friends, my family, those closest to me, they were able to be a really pivotal and crucial support group for me.”

– Tara, parent living with CF
Tell us about a time the stars aligned for you.

In 2010, I was about to graduate from college. My degree was public relations. I had made some great connections in and around our community, and I decided that, for a long time, I had been a part of other organizations and other groups to raise awareness and money for CF, but it was time…to do something myself. So I gathered my friends, like, gathered a committee, and we started a fundraising event.

I wanted to do something that was catered more to my generation. And so we did a fun event involving wine and music and food, and it was just a really great event. And unbeknownst to me, someone attended that event, and he attended because my aunt brought him along—and long story super short he's now my husband! So my husband attended my first ever fundraising event for CF and we have been married almost nine years now, and it's just one of those stories that, it's just so funny.

Was it difficult to make the decision to move to a different country to start your family?

To be completely honest, it was like baby steps after baby steps which led to then, ultimately me moving. In the very beginning, I said I was never moving to England and I was definitely never trading the sunshine of Florida for the rain of Manchester, but God had other plans (as He has does so many times throughout my life) and we decided that it would probably be best—that we wanted to be together and that it would make more sense for me to move to the UK than it would for him to move to America. Because he was working in his family's business, and it was something he was really passionate about. But one of the non-negotiables for us, for both of us really, was that we were never going to let my care suffer. So if that was going to be the case, and if I was going to…move to the UK, we had to make sure that my care was going to be the best that it could be.

 

Navigating that was a different story. Because things aren't always the same. I mean, our world feels so small now. So lots of the treatments and medications and regimens that I was on in the US were similar to that of the UK. But the doctors here were amazing. They invited me in, both of us in, they showed us around, they talked to me through all the processes and what they would decide treatment-wise for me, and it was very similar to the care that I had in the States. So because of that, we felt comfortable moving, but only because of that. Otherwise, we would have had to make other plans.

How do you manage your CF while raising twins?

I think it's about keeping perspective. Even on the hardest days. They are just something I never ever could have in my wildest dreams imagined. I think life expectancy for someone with CF has definitely moved and progressed and changed, but I still, if I'm honest with myself, probably never thought that I would be raising a family one day. Sure I'd hoped it. Sure I dreamed it and was working towards that, but I think just having that perspective that this is just such a blessing…But yes, there are definitely hard days. My health definitely has, at some points, suffered because of that, if I'm honest with you. In the very beginning, probably around the time when the boys were about eight months old, I was hospitalized because my lung function had declined. And I think, although sometimes we can never help that happening, I think one of the reasons was probably that I wasn't as diligent as I should be on my treatment, and at that point in time, I really realized and made a decision that I actually needed to prioritize my health in order to be the best that I could for them—for my husband, for our family. That I needed to continue to just really try to keep myself healthy because, if I wasn't healthy, then the rest of my family's not healthy.

 

And so, one of the things that I do, and again I know it's not for everybody, but I try to get up before my family even rises, so I set my alarm really early and I tried to get a good hour to hour and a half before my family gets up to get my breathing treatments in, to get some exercise in, and it truly sets me up for my day. Both mentally and physically, it helps me be a better person, a better mom, a better wife. More patient for sure if I get that hour to hour and a half in before my family even rises. And it's just continuing to remind myself that I've got to prioritize my health.

Image of Tara, a cystic fibrosis patient Image of Julia Rae
Make sure to listen to the full conversation between Tara and Uncommon Lungs podcast host, Julia Rae

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