This week in the Caregiver Chronicles we share the story of Lynn, who has two children living with cystic fibrosis. Lynn and her husband Josh have managed to balance the demands of a double treatment schedule with everything else that comes along with raising two elementary school-aged kids. Hearing their story has helped the Folia team to put things in perspective, and I hope you will find yourself as uplifted as we have by the hope and spirit that Lynn shares with us here.

N: Thanks so much for making the time to do this interview, Lynn. With this blog, we’re hoping to give some airtime to the caregiver story, to help other people who care for their loved ones realize that they’re not alone in their experience. I’m looking forward to hearing about your journey – please start wherever you’d like!

WORKING THROUGH THE FIRST DIAGNOSIS

L: Well, let’s see. I have two children with cystic fibrosis - Carter is 10 and Emma is 7. Carter had some illnesses during his first year of life – pneumonia and a chronic persistent cough. We treated him for the pneumonia, of course, and then he saw a lot of doctors over his first year. The cough kept going, and we tried treatments for asthma, allergies, and whatnot…finally, after 16 weeks of no progress with the cough, we were referred to the CF clinic at Maine Med, and he was shortly thereafter diagnosed with CF. He was 13 months old, and this was prior to the start of newborn screening. As you can imagine, it was extremely devastating – we didn’t know anything about cystic fibrosis. We didn’t have any family history of it, and we honestly had barely heard about the disease.

I remember getting the phone call from Dr. Mellow (a fitting name!) – I was at work, and I took the call outside of course. I remember him telling me the diagnosis, and it was kind of like I was in shock. I didn’t have a lot of emotion at that point. I just sat and listened to him, and he just spoke, telling me that we’re going to get through this. At that point in time, he was the perfect person to get the diagnosis from.

“I just sat and listened to him, and he just spoke, telling me that we’re going to get through this.”

Dr. Mellow said that he didn’t recommend researching it, but if you’re going to, look at CFF.org. By the time we had our next visit for Carter – it was about a week later – we hadn’t done much research. Over that week, we did a lot of talking, and a lot of hanging out with our family, and a lot of crying and playing with our baby.

Once we placed Carter on a medical regimen, we were quickly able to get him healthy again. He had his first admission due to an infection when he was 20 months old, and we were in the hospital for 10 days. What’s really cool about the Barbara Bush Children’s Hospital is that there are still nurses there today from Carter’s first admission 9 years ago. It’s a good place to be if you have to be at any hospital – the nurses are very special there.

BABY #2 AND A SPECIAL SIBLING BOND

So we as a family had to make the decision to have more kids - it was something that we had talked about beforehand. We discussed our options, we talked to a genetic counselor, we talked to the CF clinic, we considered doing IVF for genetic testing, and ultimately decided that we were just going to go the old-fashioned route and have a second kid. We knew what our chances were for Emma to have CF – it’s a 25% chance per pregnancy. At the time that I was pregnant with her, I was given the option to have the prenatal testing done. I think that being the parent of a child with CF already, I knew the struggles and stresses, and I decided that I didn’t want to bring any of that into my pregnancy. So I decided not to have the prenatal testing – it wasn’t going to change my decision about my pregnancy. I waited for the newborn screening. Emma was diagnosed when she was 8 days old.

The diagnosis doesn’t change very much the second time around – you’re a bit more knowledgeable about CF, but that’s about it…and it’s now times two. Everything becomes so busy, and you just juggle and make the best of it.

N: I can only imagine how difficult that is to manage on a daily basis.

L: Well, kids know that they’re special and that they have CF and other kids don’t, but it’s their life, it’s their normal – it’s all they’ve ever known. They don’t like it – they have treatments that they do multiple times a day, and there are many hospital stays. There was one point when Emma was in the hospital every six months, starting when she was 11 months old. She was just sick. We had to make the tough decision to have a feeding tube placed for her when she was 20 months old. She wasn’t gaining weight – and weight and BMI have directly correlate with lung function. Emma was at 1% of weight for kids her age, so we made that decision that she needed help eating and sustaining – she was the size of a 12-month old at 20 months old. The two of them have been in the hospital 10 and 12 times over the last 9 years. It’s tough – but they’re professionals, and live their lives like normal kids most days.

N: I would guess that they have a pretty special bond because of their shared diagnosis.

L: We talk about it all the time – it’s a blessing in disguise. Siblings have a pretty amazing bond no matter what, but I always wondered whether one of my children might be resentful of the other one if they didn’t have CF, or if there would be jealousy because of the extra attention – it’s not something we have to deal with. Instead, they understand each other like nobody else ever will. My husband and I live this life with them every day, but we’ll never fully understand what they’re experiencing. When I go to the gym and I’m huffing and puffing, sometimes I stop and think that this must be what my kids are going through every day. I can’t fully get it, but it’s normal for them. They just live their lives.

“...they understand each other like nobody else ever will.”

N: That’s pretty amazing. What do they like to do?

L: They like to fight – they’re normal siblings. <Laughs.> Emma’s into gymnastics and singing and makeup, and drawing and writing – everything that a normal little girl likes to do. She’s full of it and a spitfire, and she keeps things interesting that’s for sure…she’s non-stop! Because of that, at bedtime she tends to just drop and not move again until the next morning.

Carter is like a little sponge – he wants to know everything about cystic fibrosis. He’s very logical and smart, and he just likes to understand things. He says that he wants to be a Youtuber someday – he’s big into video games and YouTube – but he also likes ice skating, and he just recently started playing the saxophone about a month and a half ago. He’s very good at it – it’s pretty impressive, and it’s also extra chest PT!

N: That’s awesome! It’s funny that being a YouTuber is a career that kids can dream of these days. It seems like your family is doing great, despite all of the things that you have to deal with. How do you make that work?

DAILY LIFE AND MAKING ADJUSTMENTS

L: Well, I haven’t really experienced being a mom without being the mom of a child with special needs. Basically, we’re busy – our family is busy, and we work so well together. This experience has made us communicate better and be more flexible.

We have a very strict routine, we try to make everything work, but it doesn’t always work. We’ve learned that it can’t always be perfect - but that’s hard for me, because my personality is that I want everything to be perfect and just-so. I’ve had to let go of doing laundry every day!

I’ve had to learn to let things go because my kids need time with me. They’re required to do so many treatments, so much homework – everything is jam-packed into a small timeframe, so every little bit of time that we can spend with them makes all of the extra stuff a little bit less difficult. To make things easier for them, we have to reel ourselves back in every once in a while – we have to focus on keeping the kids happy - because it’s not just a physical disease, it has its mental health challenges too.

Most recently the kids have become honorary members of the UMA Moose basketball team – so that’s taking up a lot of our time recently, which is a great thing! We’re going to events, practices, and games, so that’s a lot of fun. Mostly, when we have the time, we try to spend as much time together as a family as possible – whether it’s going out to dinner, or going out to play at the playground, or spending time with our extended family. It’s usually very casual, just because the downtime is few and far between. We also love to play with our dogs, and spend time with friends (including our extended family!).

It's also been very important to have the help of our family and friends when we need someone to take responsibility for caring for the kids - while Josh and I have a date night, when the kids go to a play date or sleepover, or even for several days at a time when we are caring for the other child in the hospital.

RAISING AWARENESS

N: I know you’re active in your community – can you talk a bit about what it’s like to share your CF experience with the people around you?

L: Well we’re very open about the disease and what they go through on a daily basis, because we think it’s important that people understand why Carter and Emma might have to have an inhaler, or why they might not be at school. At school, the teachers and principal and nurse and staff are all amazing. Someone from the CF clinic attends an annual staff meeting at the school, where she presents information and answers questions about CF. The school is very supportive and accommodating - they’ve been great to deal with.

The CF community is just amazing to be a part of. No one else has been through it, or can understand everything that we’re dealing with as well. That having been said, the rest of the community is still very compassionate. The city of Augusta gives us a location to use for a Zumba event that we do every year. I think that when you sit down and actually talk to people about it, it at least gets the word out and makes us feel like we’re doing our part for the CF community.

My father has been in politics for many years, and he’s actually good friends with Senator Susan Collins, so he got us in to meet with her in her office in DC in June. We were able to tell her our concerns about healthcare, and how healthcare reform could impact the CF community and ultimately our children, negatively. Because he worked for BIW and was part of the union there for many years, he was also part of the Western Maine Labor Counsel, so we’ve had the chance to do some speaking there about our family and CF…just to get the word out. They’ve been hugely supportive.

LOOKING FORWARD

N: What are you looking forward to in your family’s life together?

L: I’m excited for the kids to take responsibility for their own treatments! (laughs) It’s actually really exciting to see how they’re evolving and learning about their medications – I know it’s not our entire life, but it’s cool to see how they take on that role to eventually become their own caregiver. They’re still young, but Carter is really working toward that role, and I see it in the next few years. We try to encourage him to be more of a participant in his own care.

I’m also just looking forward to watching them grow as healthy children – finding new things, trying new things, learning what they are passionate about – whether it’s Carter continuing to play the saxophone and maybe taking up hockey, or Emma becoming a famous gymnast someday, or becoming a cosmetologist because she’s so big into cosmetics and hair – I’m looking forward to watching where their personalities bring them.

They’ve just been so healthy over the past two years, I’m really anxious to see how that continues. They’re on some really great new medication, and I’m super excited about that – hopefully that will keep them as healthy as possible so they can enjoy all these things.

WHAT WE HAVE LEARNED

N: I hope so, too. Looking back, what have you learned from this experience that you would share with someone who is just starting out?

L: I don’t think there’s anything that I wish I had known at the beginning, really – I think we learned as much as we needed to as we went.

But I would say, in my opinion, it’s beneficial to be open, share your story. The first couple of years we felt like we didn’t want to hear about others’ stories – I didn’t want to go to events. I was scared. But I think you should be open to learning as much as you can or want to. Talk to your kids, and just talk to the people around you. It’s important to share your story for fundraising purposes, yes, but it can do more than that. When we shared our story with Senator Collins, I like to think that we encouraged her to fight so hard for healthcare. The more you talk to people, the more people you meet, the more impact it will have – don’t be scared. Your voice is important and powerful. Even though it’s not the most comfortable thing to do sometimes – it is what it is, just do it!

I also want to add that although I do a lot of the talking, we would not be successful as a family without my husband. He’s my rock, the fun-loving cool dad, and he does the dishes and the laundry…none of this would be possible without him. I can’t stress enough how much of a team we really are as a family – so even though his face and voice aren’t there as much as mine, it’s only possible because he’s here keeping the kids under control. Don’t shut each other out, you need to be a team – and then you will make it through anything.

Lynn, on managing CF as a team