Our first featured caregiver of 2018 is Jenna, Maine-based mom to Kate, a three (almost four!)-year-old living with cystic fibrosis. Jenna and her husband, Cort, have already become fixtures in the Maine CF community. The Folia team met Jenna through the Maine CF parent group, and we've been truly amazed by her energy and persistence in advocating, fundraising, and raising awareness for CF. Check out Jenna's facebook page, Kate's Kommados, to learn more about what Kate and her family are doing to advance research in CF.
N: Jenna, thanks for making the time for this interview! I’m excited to share your story with the caregiver community. To start things off, I know everyone around you is so impressed by the amount that you know about CF. How did you go about learning everything that you know now?
J: Well, we knew when we were pregnant that we had a chance of CF, so I started to look online a little bit…but then I was totally overwhelmed, so I stopped searching completely.
Early on after Kate was born, she had her first day at clinic. It was a very quiet and stormy day. One at a time, the cf team members came in and told us who they were and what they did – we were probably there for 3 hours! When we left we had tons of information. They also gave us a big fat book and a DVD that I never looked at – to be honest, we learned so much from the clinic staff, reading more was overwhelming. Then, I talked to my family and filled them in.
The next step was thinking about what I would tell Kate about CF. I ended up writing my own little kid story about CF that I never did anything with, but it helped me to reprocess everything. Clinic was also awesome at holding our hands through the first year, the relationship we have with them is so important. It gives us confidence that we are competent parents, and trust that between all of us we will figure out what needs to be done.
N: That’s great. How about the more technical aspects of the disease? Did you have a science background?
J: No, I don’t! The science stuff I appreciate more now – especially with the new gene modifier medications coming down the pipeline, it’s a really exciting time, because as a parent you want to learn about what’s going to apply to your kid. With Kate, we learned that none of it was going to apply to her – so that’s why I really started digging into the science to figure out what might be coming up. To understand when something might be able to help her. My brother Justin is in the science field, so he will interpret the info when it goes over my head.
And a lot of the rest of it just comes from talking with other families. Clinic’s recommendations always trumps others with regards to the way that we’ll decide to change Kate’s meds and treatments, but just understanding experiences, sharing and brainstorming ways to deal with different behaviors – that all comes out of connecting with other families. When Kate was little, the clinic had a dinner for parents of kids under two. Four of us showed up, and we still all know each other. We have a core group, we chat and get lunch sometimes. No one else understands the milestone of swallowing an enzyme whole, or growing a new bug for the first time…having someone to commiserate and celebrate with makes a big difference.
Our recent trip to the NACFC [the North American Cystic Fibrosis Conference] was a huge information boost – and it was overwhelming. I sat in and listened to so much, but I’m really hoping that the clinic staff soaked in what I couldn’t! [Laughs.]
I also use the CF website to make sure that my facts are correct for reference, before I put them out there. But honestly, I spent very little time researching – I just learn as I go and ask a ton of questions.
N: We’ve already started to talk about this a little bit, but CF has an incredibly strong community built around it. What has been the most valuable part of this community for you?
J: There’s so much – the online support is very real. There are moments – like last summer, when we went camping to my parents’ house, 2.5 hours away, and when we got there I realized that I didn’t have the hypertonic saline solution. Cort was going to drive back and get it (because we were in a rural place, and it was Friday night of Memorial Day weekend). First though, I went online, and I found one connection that I knew was closer to us, and she was like – my son has some extra, I can bring you some! She was about an hour away, and she offered to meet me halfway that night! It was like 11pm at night, and she met me, and we spent about half an hour standing in a dark parking lot that night with her, just swapping stories. We’d never met before, but were instantly connected.
CF can be isolating, but with the online community nowadays, you’re never alone – there are people out there. We’re such a unique community. We just appreciate the little things so much more – we know how important that stuff is, so we’re willing to help other people out as we can. This past Christmastime, Kate had her eye on this specific toy – a Barbie camper, she’s talked about it for pretty much the past year– it was like a $100 thing, and I had my email on the manufacturer’s website for notification of discounts. I got an email that there was one for $12, but it was in Leominster, MA. I called them, and the store manager said that she could honor the price, but only if she was there (and she worked between 5pm and 2am). I asked around on the forum – could anyone pick it up, if I reimbursed and paid shipping? It took less than 5 minutes for someone to say, 'my in-laws live right there, and they’d love to do this for you.'
N: Wow, that’s amazing.
J: It really was, and meant so much to us. It goes both ways – We try to be helpful and supportive too. I have things that I’ve learned with Kate or tried, and I’m happy to share what I know. I have a friend who just moved here with her boyfriend who has CF they were looking for info on adult cf care in the state – and I realized that I knew 5-6 adult CF patients who had first hand experience, that I just didn’t have, so I helped them make those connections. And we all know that information is power. This is just what you do – it’s kinda how it goes!
N: Switching gears a little bit here - how do you talk to Kate about her condition and her treatments? I know she’s still little – do you talk about it at all yet?
J: I’m someone who tends to shy away from uncomfortable conversations, and the whole medical world was very uncomfortable for me before Kate. I knew that I needed her to be confident and comfortable in these situations, because this is our lives. I have to check myself and make sure that if something about CF comes up in conversation with her, I don’t hesitate and try to run with it. It comes natural now, but it didn’t at first.
When she was really young, we would often just stick with, “this isn’t a choice” when she was resistant to treatment. Sometimes we would read books about CF and talk about what each medicine or treatment does.
We also make checklists before clinic so she knows who is going to do a culture versus who is just going to need to talk to you, so you don’t need to start crying.
It used to be that CF only came up when it had to, but now she brings it up. If you ask her she can tell you why she does all her meds too, for the most part. I never wanted her to feel shame or shy about her CF, so I made a point to just talk about it like it was normal. I never let myself shy away from a conversation because it was uncomfortable, because at this point she is so impressionable, she doesn’t know to be uncomfortable like I tend to be. If I treat it like it’s normal, so does she! That is what I want for her…I think it gives us both more confidence.
Again, knowledge is power – we want her to understand why she’s doing everything.
She shows us how much she understands sometimes in such unexpected ways. One time she was stalling vest and telling me she was not Kate…she was Doc McStuffins! I suggested that Doc do vest. Kate came back with “Moommm! Doc doesn’t do vest, she doesn’t have CF!” So you can tell that she knows not everyone has it.
Another day we were talking about kids getting ready for school and riding the bus, and Cort said something about how kids need to get up extra early to do vest first. She piped up something like “Daddd, those kids don’t have CF, only I have CF”. That being said, though, we make sure she knows she isn’t alone. We share pics and videos with our CF friends, and seeing other kids of all ages doing the same treatments really connects with her.
In general, it’s definitely something that she knows about, but she doesn’t shy away from it and it’s not a bad thing – it’s just part of our life, it’s part of what we do, and we just go with it.
N: Can you talk a bit about what you’ve learned about yourself and your family in the time since Kate’s diagnosis?
J: It’s really hard to separate just learning parenthood from CF, because they happened at the same time for us. She was born on a Monday, and we found out on a Friday. By three weeks old she was taking enzymes.
I’ve learned that I could adapt more than I realized – I’ve always been more of a type B person, and I really hate routines and repetition and having to be the same all the time. I had to learn how to embrace a more type A lifestyle. We do the same exact thing in the morning and in the evening, and having a routine makes it easier to stay on top of a clean house that’s disinfected. That being said, there’s currently a sticker that’s stuck on the floor. But it’s clean! It’s disinfected! So I don’t have to sit down and scrape it off right now – it doesn’t have to be perfect – just clean. I can give myself that type B moment, and scrape it off sometime later when I feel like it. [Laughs.]
You have to learn that something is going to give no matter what – learning what to let go of is the most important thing. Finding a balance between having a clean home and having a happy life, avoiding risks and still living to the most. Whatever is going to be the best balance that can let me sleep at night, that’s the best plan. If it’s bothering me that I need to vacuum her bedroom floor, I’ve learned that I should just go vacuum – if that’s what it takes to sleep, don’t worry about it!
Our priorities have also changed a lot in terms of how we spend our time. It used to be working extra and getting ahead financially was good. We give a lot more value to our time now. For instance, we have always done our own wood for winter fuel. Now we think about is it worth the time that it takes to chop the tree, haul the brush, cut and split and stack the wood and etc, when we could be doing something else together? That time is more valuable now because of Kate. In terms of experiences, we realized that we would have a better experience for vacations using a camper instead of a tent, because it’s easy to keep it clean, and we could have more quality time to spend together. We spend less time worrying about the dirt and germs, It’s important to make the most of the moments we have.
N: That’s pretty amazing. I know that so many people wish they could have that perspective on a daily basis – because time is limited for everyone.
J: I think it really does take something like this. We watch other people have different priorities, but this is really working for us, and we have no regrets.
That’s the other piece with CF – you don’t know at what point things are going to get worse, but you know that at some point, something’s coming. So you want to be able to look back and enjoy every moment, without wishing you had done something better. You want to make the most of those situations. It’s different for everyone, and for us that’s where we’re at.
N: What are you most excited for in this new year of 2018?
J: For us, we’re really excited to spend more time as a family. We love to do things like fishing and camping. Last year was our first year using a camper, and so we had to figure out how far we are comfortable going, the logistics of packing and unpacking, what you really need and what you don’t. This year we’re excited to do more of it. Kate’s turning 4 – not looking forward to the four-nager that comes after the three-nager! She’s getting old enough to do more things and more group activities, although we’re still cautious about those.
I’m excited to see her grow into the little person that she is. She’s learning so much so fast these days. For her enzymes, for instance, we’ve always opened the capsules and poured them into the applesauce. We just recently decided to use up some of our older smaller dose capsules. That means we need to use more pills for the same dose, and I got a little bit tired of opening them all up to pour into the applesauce. So one day, I dropped a whole pill in the applesauce and just gave it to her without saying a word. Kate swallowed it down, and then another. She kinda looked at me funny, and then she did it again, and finally noticed, she got it! We had talked about how she would be able to do this when she was a big girl – and this weekend she did it with every pill. So she’s a big girl!
Sometimes she’s growing up beyond her age, like in those moments, and other times you remember she’s just 4, like when she has a melt down over her imaginary friends...that’s okay though, we’re not in a rush. 😊