Podcast: Kate on parenting with CF

Transcript

Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice. And you should always follow the advice of your clinic team regarding your health.

Kirby: Hello, my name is Kirby. And in this episode of the CF strong podcast, we’re talking with Kate about CF and parenting. Thanks so much for joining us, Kate, can you start by telling us a little bit about yourself?

Kate: Hey, Kirby. Um, so as you said, my name is Kate. And I’m 52. And I’ve got CF and I live with my husband and my son. I’ve got a 15 year old son. And I work part time very part time as a social worker.

Kirby: So you’re a mum?

Kate: Yes.

Kirby: Did you always want to be a mum?

Kate: Good question. Look, yes, I did. But when I met my husband, I was 32 I think. So I decided from a CF perspective, I’d missed the boat. So the poor man, we went on our first date. And we actually met a person, well intentioned friends. Anyway, we went on our first date, and I just thought, Oh, this is ridiculous. I’m not going to start a relationship with someone who wants kids if I can’t have them. So, you know, towards the end of our first date, I’m going look, what are your thoughts on having kids? And he’s going yeah, great. Great. And I’m going right, so this has to be pretty much a last date. Because I’m too old to have kids from a CF perspective. Anyway. And then he was going well, it’s a first date, let’s just wait and see how we go. But here I was being really, I guess black and white and thinking, I don’t want him to get attached like, I don’t want to get attached to him, if it’s gonna, if kids and my ability not to have them is going to be a deal breaker later. So he’s just going well, let’s just see you know how second date goes. And we can go from there. But yeah, so I did want kids, but I had decided that at 32, I had sort of missed the boat. Yeah.

Kirby: And then what happens next? Because obviously, we all we know now that you have a teenage son, so what happened next?

Kate: So what happened next? So we dated for a while and and then we started talking some more about kids. And he was going well, I don’t see why. You know, you’re saying you can’t have kids, but you’re so healthy. And also going well, you know, average life expectancy with CF is 37 and you’re being 32. You know, that’s not an ideal situation of kids. But obviously, I was thinking, I mean, I was really well. And I was thinking that 37 wouldn’t apply to me. But I was still, you know, keeping an open mind. So then we started to do research, we were actually, we’re both from a science background. So even though I’m a social worker, I did science at uni before I did social work. And he’s just he’s sciency background. So we really, it’s so unromantic. But we actually were doing internet searches of the published medical published medical research about CF and pregnancy. And there wasn’t actually a huge amount out there for people my age like it was, there was some research about younger people having CF or people with worse lung function having having children, but not not a huge amount about 32 year olds with good lung function having kids. So we spoke to my doctor, my specialist at the time and going, you know, what’s the story? What do you think? And he was, he was the most beautiful doctor, and he was just going well, you know, there’s probably no reason why we couldn’t. And so, you know, and I was saying, I want, if I had a kid, as much as you could ever do it, I wanted to guarantee that I’d be alive for the first 20 years. So you know, at the age of 32, is it possible that I would be living to 52, right, like, could I guarantee I’d be alive for the first 20 years of their life? And yeah, and my docter is going well, if you look after yourself, like probably there’s, you know, there’s a really good chance. So we then started to go down the track of trying to get pregnant ourselves. We didn’t have much luck, but also because I was old, from the CF perspective, we didn’t try ourselves that long. And then we did IUI so he got my partner, my husband now but at the time partner, got we went and did genetic testing for him. We tried naturally for ourselves for I think only about six months. And then we jumped straight into IUI and that didn’t work and so then we did IVF and I hated IVF it was a nightmare. As far as injecting hormones turn the until fruit loop and I decided that it was I was from an IVF perspective, I was good for one go only. But luckily, we had first go, we had a good egg that became my beautiful son. So I actually, I guess from, from when we actually started seriously talking about it to when we got pregnant, I didn’t have my son until I was 37. And now he’s 15. A joyful teenager, she says.

Kirby: This conversations today is, is we’re really keen to chat about what it is to be a parent when you have CF. So this is something that you’ve done for 15 years now. So tell me a little bit about how you manage being a mum and having CF?

Kate: Oh, gosh, look, I try. You know, that’s a massive question. I guess also, thinking about the difference between being an mum literally being a mum to a teenager, I guess as much as possible, I always try and give my son a smooth path. So I try and make sure that that he doesn’t get unnecessarily worried about me and CF. And I guess like obviously, he is going to be worried about me and, but I guess, since he was very little, I’ve tried to give him age appropriate information. So when he was little, it was quite easy, because you don’t have access to the internet yourself to go on to Google searches. But as he’s gotten older, I’ve always sort of said to him, you know, any questions about CF, ask me, like, there’s so many different ways CF impacts on people. And, you know, I, you know, I made a promise to him that I would always answer his questions really honestly about myself how CF impacts on me. And so I think, luckily, we’ve all you know, he’s he’s asked different questions at different times. And I’ve given those answers. For me, it’s always important to, I guess, be optimistic. So I, it’s been a lucky time in lots of respects with parenting, because we’ve had Orkambi and then Symdeko and Trikafta, it’s always been, I just need to stay well as I am now. Because this great treatment’s coming. And so now obviously, Chuck have just come. And, you know, that’s been fabulous. So it’s been sort of almost like an easy time a good a good news time. Because, you know, even when I have been sick, or I’ve had to go into hospital, it’s, it’s just like, I just need, you know, I’m just focusing on staying well, and doing my best I can because we’ve got these good treatments coming in, then things are gonna be, you know, maybe a bit easier.

Kirby: And speaking of treatments, how do you sort of manage what you need to do to keep yourself well with what you might need to do as a month?

Kate: So that’s always, yeah, it’s always been a juggle, I guess when, now as he’s a teenager, it’s easy. But when he was little, I really focussed massively on my health as well as parenting, you know, like, so, you know, you look at people that have gotten multiple kids, child, three or four just fits in, right. So that’s sort of the approach I took with my health and CF. So almost, you know, bizarrely, almost like my first child is CF, and my second child is my son. So he just had to fit in around it, which sounds really ruthless. But you know, without my health as a parent, it’s all of you, all the wheels are gonna fall off. So I’ve got to keep as many wheels as I can, on myself, and so I can do the job as well as I can. I included him in some of the stuff which was helpful, so it sounds really tragic, but I would let him puff my puffer for me. So he when he, this is when he’s little, obviously now as a 15 year old would be ridiculous. But when he was like, I don’t know, four, I’d let him puff my puffer and I breathe in my puffer sometimes I let him squeezed a little nebules into my nebulizer. So he was allowed to be an assistant like that. I actually, you know, like, I guess it’s, I gave him his own tablets when he was little. So he had vita gummies. And I think there’s a lot of debate about whether vita gummies are effective or not, but you know, for a little kid, it was great because I had my tablets and he never actually had any interest in having my tablets because he always got his own by the gummies. I thought like, if at the very worst, he’s having a lolly each morning at the very best, maybe he’s getting some extra vitamins. Yeah, I guess I’m thinking about parenting though. One of the things that does jump to mind as being the hardest is time, is when he’s been sick as a little kid. And so, it’s always been very much about me trying not to get sick. And you know, when kids are little, it’s, it’s when they’re tiny, it’s sort of easy, easier. But as soon as they start to go to childcare, daycare, or primary school, then they become these massive germ vectors. And you catch so much. So that’s always been the hardest thing is, you know, being a mum and cuddling your sick baby or your sick kid, at the same time, desperately trying not to get sick as well. We’ve just had that recently, actually, because he got COVID, probably about six weeks ago. And that was like, Oh, my goodness, how, you know, obviously, he’s 15 doesn’t want cuddles. But, you know, how do you care for him as a loving mum, without catching COVID? Fortunately, we managed it. But um, it was it was one of those challenges that I guess CF adds an element of like, I desperately don’t want to catch this bug.

Kirby: Talk talking about that, you know that that idea of you know, sick kids coming home from school. When you are sending your son to school, is there anything sort of, in your experience any conversations that you have with the school about, hey, this is the situation, this is what I need you to know. Like, was that ever something that you had to think about?

Kate: Yeah, yeah. So I am. Sorry, I’m a social worker. I’m a planner. I like to plan things so. So the preschool that he went to, I chose one that had really inverted commas difficult hours. So people weren’t using it for childcare. They were using it for early childhood education. So that I chose that deliberately, because that then meant it was more likely if kids were sick, they weren’t going to be sent there. Because the parents didn’t they had other childcare options as well. And they weren’t using that as their only option. site. We did that for when some sometimes with teachers, I’ve told them I’ve had CF, sometimes I haven’t. I’ve always if I’ve been going in for treatment, I’ve always made sure that his teachers knew just so that they could, you know, just make it a slightly easier path. So if he didn’t do homework, or he was, I don’t know, misbehaved in some way at school. The teachers would give him some slack. Having said that, he’s been pretty good. So the way that not the worst thing, the biggest challenge is some bizarrely, in one year at school in primary school, he came home and said, Mum, there’s a boy in my class with CF. It’s like, Oh, my goodness, okay, we have across this bridge. And it was really sweet because this this boy, at the beginning of each year talks about having CF when they were in primary school they did. And my son was going Ah, yeah, my mom’s got CF too. And this boy went home and said to their mom, there’s some new kid in my year that reckons he’s, he’s got his mom’s got CF. And I think the parents that, we’re going, you know, this kids obviously gotten confused. And maybe when you say you cough, maybe this kid thinks my mum coughs and that’s the same thing. Anyway, a couple of weeks later, actually worked out a way through the school to ring this other mum, and go Hi. Anyway that was was something I never thought I would come across. Yes. So but it worked out well, we just the family’s absolutely gorgeous. And we worked out ways to make sure that that if there was there was only one year, they’re in the same class together. But from that year onwards, they weren’t in the same class. And for school events, we always made sure we weren’t in the same room at the same time, and that sort of thing. But that was an interesting discovery.

Kirby: Yeah, probably not something that you necessarily expected to come across.

Kate: No, and it was sort of nice, because I used to say, not now that my son’s in high school, but when my son was in primary school, every now and then I’d see this, this kid with CF, so like checking me out and just and I think the fact that I looked like such a boring mum, as opposed to anything else was was maybe a little bit reassuring to this kid.

Kirby: You mentioned a little bit before about you know, having those conversations with your son about CF. How do you sort of approach it when perhaps they do see, or hear things about CF that might upset them or scare them? How do you approach having those conversations?

Kate: Look, it’s hard. Like I’ve said to my son CF is really serious, you know, and people do get sick and people do die. However, you know, I’m doing everything I can to stay as well as I can. And like I mentioned before, because we’ve got these fabulous drugs on the horizon, I’d always say I need to stay as well as I can. Because we’ve got Trikafta to come in, that’s going to be this fabulous drug. But before that, it was a different coming. Um, Trikafta has come on. I’ve been on Trikafta now for about five weeks. And I’ve noticed incredible difference. So I keep saying to my son, can you listen, like can you hear me like listen to my chest? Like, listen to her breathe, listen to her cough now? How good is it? How different is? So I think now he’s like, yeah, okay. Obviously, everything I said before was sort of true, because, you know, we’re lucky enough to have the drug, but I continue to try and reassure him when he was younger, about the fact that it’s my you don’t like, it’s my CF. So how CF impacts on me is different from how it impacts on someone else, you know, and I’m doing everything I can to stay as well as I can. So and he does a bit of a team effort, like, as far as you know, I, I work very part time. So that so that I can look after my health. I do lots of exercise, try and do exercise every day. I always do. I’m a dinosaur, I still get chest percussion. So, um, because that works better for me. And, you know, he knows that the my physio is important. So I’ve just very much focused on the fact that, you know, I’m doing everything I can to stay as well as I can.

Kirby: It seems like just from talking to you today that there’s they’re really open lines of communication. Yeah, that you really do, you are quite open with him and sort of bring him along as well.

Kate: Yeah, yeah. Yeah, no, I do. And, but having said that, I’ve always kept him away from the hospital. As far as I didn’t really take him to hospital appointments, when I was at all just clinic visits. Because I was trying to minimize his exposure just to the whole CF world, and mainly hospital acquired infections. You know, like, for little kids hospitals are a nightmare as far, like I thought as far as like, they touch everything and hands are in their mouth. And, you know, it’s just easier for him just to not be there. So as far as my medical appointments, I always try to make them during school term when he’s in during the race, in school or in preschool. So that’s the like the back end of the CF that I always try and keep out of the way. Luckily, I’ve done, most of the time, when I get sick, I do home IV. And so he’s always been around that side of the highway and seen, you know, injections and needles and whatever else. And when that happens, I’m sort of very honest and say look to so these drugs work as well as I can, I need to try and have as much rest as I can. But I’ve tried to stay out of hospital as much as I can. I have had a couple of times I’ve been in hospital, but even then I’ve because I’ve when I’m in hospital, often it’s been during school terms. So I’ve just tried to get him to still do his normal school stuff. Like he goes to school, and then he’s busy after school with doing different activities. So he, I’d get him to just keep doing his normal stuff he keeps to his routine. Which then means that actually he doesn’t see me in hospital, right? Like, it’s via FaceTime, I have an evening when he’s finished his, the way he’s going to do so try and keep to routine as well.

Kirby: What have been some of the challenges of being a parenting when you have CF?

Kate: Look, some of the challenges of when you feel exhausted with CF and just tired. Having that extra type of energy to deal with a kid that’s got their own things happening, right? And then, you know, sometimes they might be having their, I don’t know, a fight with a mate or whatever it might be. And if you’re just feeling really tired or you’re not feeling well being able to put that aside and still focus on them and there and have the you know, that sort of like motherly focus when really all you want to do is curl up in bed and go to sleep. Even though it’s like, what three o’clock afternoon. Yeah, so it’s just I guess being there for you’re being there for him. When you know when you’re sick and you’re having trouble even being there for yourself has been challenging. Love play as an opportunity times that there definitely has been times, I guess that’s when it helps to have other people around in your life that can pick up that slack as well. So luckily, my mum has is it’s got a really close relationship with my son. So she’s picked up the slack at times

Kirby: Do you think about the future? And what that looks like for you as a mum?

Kate: Yeah, do so, you know, like, I’d sort of say quite flippantly that when we were trying to have him, I wanted to live for the first 20 years of his life. Now that he’s 15, that’s only five more years. And it’s like, again, I’d like to have a few more than five more years. So, you know, it’s sort of, it’s a tricky thing, you know, like, I, selfishly I don’t want to miss out on parenting. Any of I don’t want to miss out on any of it. So, I mean, having him has been a great motivator to really focus on my health and stay as well as I can. But the original deal of trying to be alive for the first 20 years of his life. Now with five years left, that seems like not such a good idea. I’d like a lot longer. I think, you know, when he was a little a few years ago, before Orkambi, my lungs are getting ratty at a more rapid rate. And I was starting to think, if these drugs don’t come through, I’m not going to make it to when he’s 20. So that was pretty full on. Yeah, I, I made. I mean, once again, being having CF being a social worker being a planner. So I chose the school that he went to, were in a lucky position that you could choose, having only one child helps a little bit. So we sent him to a school that’s got really good pastoral care. So that was, once again, sounds very morbid, but that was so that, if I got really sick when he was in high school, he’s surrounded by good people that can look after him, I didn’t want him to fall through the cracks. If something happened to me, even if it’s not, if I got to spend lots of time in hospital, or if I need to have a transplant, or if I died, there would be people around him. So yeah, lots of bizarre planning that, you know, other friends of mine that have got kids in the similar age that don’t have CF, that don’t even go there. But you know, the other side is that I think, knowing that I was only ever going to have one child, because I was so like having my first and then also having CF, but his childhood has been so precious to me. So, you know, it’s very much about the quality, or the quantity, even though quantity of 20 years was important, you know, so, you know, making birthday cakes, you know, made a big effort to make birthday cakes, and make the effort and parties and taking photos, lots and lots of photos. And I think half of the reason I take so many photos of family events, and me and him is has always just been that well. It’s good to have evidence of how much he was loved just in case I wasn’t around when at some stage. Yeah. So.

Kirby: Has there been any sort of supports or resources that you’ve accessed that have been really helpful useful for you?

Kate: Look, probably the biggest thing has been just the informal supportive family and friends. But the big one is, is my mum has been helpful. Formal supports. Not so much. No, I mean, I think I was lucky enough to get NDIS funding to get my airway clearance, my chest percussion. And that for me. Like I said, I’m a bit of a dinosaur when it comes to airway clearance. But for me 52, with my lungs, and you know, like that’s what I think has helped me stay as well as as I have. So getting the NDIS funding to be able to get my airway clearance has been massive. And I’m certainly grateful for that. I mean, I used to get it through the state government through homecare, but obviously when the interest happened, it all changed and so yeah, yes, you have to go down the different channel to get it.

Kirby: What advice would you give for other parents, other mums and dads with CF? What advice would you give them for being the best parent that you can be?

Kate: Um, look after yourself first. So it sounds bad. But you know, like from a CF perspective, like I said before, if the wheels fall off the CF bandwagon, then everything else falls apart. You know, so your health is. Yeah, is is your first priority. So I guess, for me, like I said before, thinking about almost CF as my first child, and then my first child being almost like a second child, so he has to fit in around CF a bit. That’s probably one. Probably another one is similar to I’ve seen before, just cherish the moments, you know, like, all the little moments, I guess that was for me was, you know, I didn’t think I’d ever have a son. Didn’t ever think I’d have a child. Wanted one, but I wasn’t sure that I, I thought I’d missed the boat there. So I just, I’m so grateful that I get to be a parent. And I cherish every moment. Even his his some of his lovely teenage moments, I still cherish those because, you know, like, I’m still around to be to, you know, to get to be a parent of a teenager. And so yeah, it’s just putting everything in perspective perspective. You know, I got here. So I’m super grateful. And I also are you just making the memories as you go? Take lots of photos.

Kirby: What’s your favorite thing about being a mum Kate?

Kate: Look, I think, um, it’s just brilliant. Like it just, I adore him to pieces. It’s quite lovely. Seeing bits of you and bits of your husband and bits of relatives, sort of come through in your child. And then also just seeing the person that they grow into. You know, I love seeing. I love talking to him. He’s a great person. He’s a really impressive young man, when he’s not in his teenage moments. But yeah, it’s it’s watching, traveling with him as his life develops and seeing the person that he is unfolding into. His is just so joyous, he is lovely. That’s probably my favorite bit is just getting to be along you know, going along on the ride and seeing, seeing what happens and where he goes.

Voiceover: Thanks for listening to this episode of the CFStrong podcast, make sure you subscribe on your favorite podcast listening platform so you don’t miss the next episode. And if you enjoyed this podcast, we’d really appreciate if you could leave us a review. It helps other people find safe, strong, or shares with your friends. Also, a quick reminder that the views expressed in the safe strong podcast may not be reflective of cystic fibrosis community cares viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible thanks to support provided by the Australian Government and was produced by CF Community Care and CF Western Australia. Our theme music is spark of inspiration by Shane Ivers from Silverman Sound. Thanks for listening, and we’ll talk to you next time.

This podcast was published in September 2022. If you would like to share your story, please contact us at admin@cfcc.org.au. We’d love to hear from you and so would our listeners.