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Alex on parenting and CF

This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. Dive into the second chapter to “It Takes a Village” with Alex and Dr Benda Button. Alex once again shares with sensational vulnerability, courage and honesty her journey being a mum. Alex has amazing insight, and she has learnt over time, and with reflection the importance of prioritising her oxygen first when parenting.

You can't compare yourself to other parents who don't live with a chronic illness because it's such a different experience.

—Alex
Alex and her child, facing each other and holding hands. Alex is connected to a medical device.

I absolutely love being a mother, but I really need to have that balance of being both. I feel happiest when I am a parent, but I'm also working.

—Alex
Transcript

Jen Hauser: Hello, and welcome to the CFPhysio.com and CFStrong collaboration podcast series. My name is Jen Hauser. I’m a physiotherapist with almost 20 years’ experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CFStrong, we have joined forces to bring to the CF community real life insights and personal experiences on all things physiotherapy and CF. 

CFPhysio.com is a not-for-profit organisation striving to deliver evidence-based education in CF physiotherapy management to healthcare workers and individuals impacted by CF. CFStrong is a website designed to inform, educate, and empower adults impacted by CF through the sharing of individual’s personal journeys of living with CF. We hope you find some value from listening to the podcasts we bring to you in this series. Please remember the content is not intended to replace your usual healthcare. Please discuss any concerns or questions you may have with your healthcare team.  

It is my great pleasure to have Alex and Brenda back in the studio today. Alex shared with us earlier in the year her journey with family planning and pregnancy and CF and how this impacted or changed her physiotherapy regime for her. And today she’s chatting with Dr. Brenda Button, esteemed specialist physiotherapist, who has worked across the lifespan in CF. And they’ll continue to talk with Alex about the journey through to kindergarten and life with Ruby. So, Brenda and Alex, it’s fantastic to have you back again today and I’ll hand over to you guys. 

Brenda Button: Thank you, Alex, for coming along and let’s start off talking about the newborn period. If you want to tell us all the details around how that was for you. 

Alex: Yeah, sure. So, as I mentioned in the last podcast, I had a really fantastic pregnancy and I thought that I was very prepared for the newborn stage and it was very shocking, I think, to say the least. So obviously, I was so delighted to have a healthy baby and I had a really good labour, but I think I wasn’t prepared firstly, to be, I guess, a patient while also becoming a mother.  

Obviously, we know that that happens after labour that you’re not just going to remarkably bounce back and be fine, but I really struggled with just the physicality of birth. I guess like the pain of it and then the shock of then having to look after somebody else and having to sort of manage the needs of my CF and then also the changes of my body from birth and then also on top of that, look after another human being. And I think, I don’t know whether any amount of listening or reading can ever prepare you for that until you actually go through it.  

But yes, I definitely found the newborn stage very, very challenging. And I think sometimes when I look back at that time now, maybe in some ways I experienced a bit of postnatal depression and I really found the hormonal changes quite extreme.  

I actually remember sitting in the hospital—so, I only was in the hospital for three or four nights. And I remember having quite an identity loss or sense of loss of identity. And because a lot of my life had revolved around building a career and making something of my life, and I guess not being beaten by CF.  

And then, all of a sudden I felt like I wasn’t going to be able to work or I wasn’t all of those things that I used to be. And I remember writing a list in the hospital about all the reasons why I’m still myself and I had it on like a piece of scrap paper. And I remember like saying to Mike, like, “You know what? I’m still myself. I’m still Alex, like I still know how to take photos. I still have like all my friends and I still have my house and I still have you.” And it seemed really extreme at the time. And I think it was difficult for Mike to understand, but I think it was a combination of the hormones, the massive changes, the changes that I was feeling physically and emotionally.  

And so, at the time I felt like I was being dramatic, but now when I look back on it, I think, “Oh no, actually that is something that lots of people experience and everyone just experiences it on different levels.” And so, I wish I kind of had of known that. Again, I’m not sure if someone could have really made me understood that before, but yeah, I found it really, really challenging. 

Brenda: That’s very articulate because I don’t think many women would be able to put that into words. So, I think that’s amazing that you’ve actually been able to look at it in such a objective way. 

Alex: Yeah. And I think that realisation came over a long period of time of reflecting on that time. I think at the time I didn’t really understand what was happening. I just thought, why am I not enjoying this? And why am I not instantly feeling like, “Yes, I am meant to be a mother or I know what to do.” And I was, I guess, I was searching for what is wrong with me? And now I realise like, “Oh, there was nothing wrong with me.” There was just like a compounding extreme things that all happened to you. And it’s okay to not feel okay during that time because everyone experiences it differently. So, it definitely taken me three or four years to come to that sort of realisation and understanding of the situation. 

Brenda: Tell us about the infant nutrition side of it all. How did you feed Ruby? 

Alex: Yeah. So, I did lots of breastfeeding courses and seminars and things like that when I was pregnant, because I was like, “Yes, I’m definitely going to breastfeed.” That’s the best way to connect with my baby. It’s the best way to feed my baby. I was very like, “I’m going to breastfeed.” And I had obviously been given the information of just do whatever works best. If you can’t breastfeed, that’s fine. But I think in my own head I was like, “No, no, I have to breastfeed no matter what.” And that was probably one of my biggest downfalls I think. 

So, I found breastfeeding really, really tricky. I didn’t feel like it came naturally. I guess we battled for the first week or so. And then, I did overcome those challenges. And I saw lactation consultant and had lots of help and I had my mum and lots of support there. I feel like I got a handle on it.  

And then, at six weeks old, Ruby six weeks old, my chest had started to become really congested and my lung function was dropping and I could see like, “Okay, I probably need to do something.” So I decided, okay, I need to have a tune-up. So, that meant intravenous antibiotics and lots of things that were going into my body. And I thought, “Oh, I don’t know.” I did seek advice about breastfeeding and being on intravenous antibiotics. And the advice was that it would be safe. But again, in my head I just decided, no, I don’t think I want to breastfeed and have all these medications going. 

So, I won’t breastfeed during this period. So, I decided that I would stop breastfeeding and I would pump and throw it away and I would feed her formula and then I’ll go back to breastfeeding. That was a fantasy that was never going to work. So, I did my tune-up and that was exactly what I needed to do for my health. And that was the right thing to do. Ruby moved onto the bottle perfectly. She was happy with the formula.  

And then, after my tune-up, I was like, “Right. Yep. I’m going back to breastfeeding.” And it was just the biggest mistake I’ve ever done. She just wouldn’t go back to breastfeeding after being on a bottle. It was so much more work for her having to try and get the milk. And every time I tried to breastfeed her, she would just scream and I’d be in public and she wasn’t feeding and that was making me cry and then were all crying. I think probably after trying to go back to the breastfeeding for a week. I remember mum saying like, “Just go back to the bottle. Like it’s absolutely fine to go back to the bottle.”  

And I did, and that was probably the best thing that I did. And then, after going through that whole experience, I realised, “Why didn’t I just do the bottle from the start?” Because the sleep deprivation that comes with the breastfeeding and the demands on your body and the fact that really you’re the only one that could do the providing for the baby was exhausting for me. And I really probably should have had a plan at the start that, okay, I need to still do all this stuff for my health, and I need to have sleep in order to be able to do the exercise to keep my lungs going and all the things that require with CF. 

I kind of wish that I went in with a plan of, “I’m just not going to breastfeed. We’re going to split the load. This is how I’m going to look after myself, and this will relieve me from having so much pressure on myself.” I think I was very determined to just be like any other mother and in a way, I am, but I should have realised really that there was sort of some major changes and some considerations that I needed to take into account for the newborn stage. And so, probably my advice would be that fed is best, not breast is best.  

So, I think that if I had have just gone for formula and the bottle and then anyone could feed her and I could still do all of the things that a mother requires, but it wouldn’t be so the physical demands would be much less than breastfeeding because it’s so… It’s just so much on you. You just have to wake up and be there all the time. 

Brenda: Absolutely. Really interesting.  

 

Music Break 

 

Brenda: Which leads us then to who looked after Ruby while you were in hospital, having your tune-up and you know, just all that support around you that you needed in those early days. 

Alex: Yeah. So, I was really lucky to have mum come down and stay. And then, also my mother-in-law who we were living with at the time, also Mike. So, it was just a team of people that would continuously look after her. Actually, on the same day that I actually went into hospital to have a tune-up, I found out that Ruby had hip dysplasia. So, she had to go into one of those little froggy braces.  

And so, that was quite emotional for me because she was in this brace and then I was away from her, but I mean, children are so resilient and she didn’t even care. And she ended up wearing the brace for 17 weeks and was just—it helped fix her and she was completely fine. So yeah, Mike looked after her, mum looked after her, Wendy looked after her, so it was definitely a huge help. And then, I think I only did three or four nights in the hospital and then did hospital in the home. So, that worked really nicely. 

Brenda: And then, you alluded to what you thought might have been some postnatal depression and all the emotional changes. Do you want to elaborate on that at all? 

Alex: Yeah. The loss of identity I think was a huge factor and the hormonal changes were such a massive factor. I didn’t really heard about talking about the three day blues or the day three blues. And that really affected me. I remember taking Ruby home and giving her a bath for the first time and because we were living with my in-laws because we were still renovating our house. I remember we were in the bathroom and there was me, Mike and then Mike’s parents and then Mike’s sister and her husband, they’re all in there, like so excited to see Ruby have a bath and I’m just crying, I’m balling, I’m crying and they’re all like, “Are you okay?” Like I was really, I don’t know what’s going on with me.  

And then, the challenges in terms of the breastfeeding challenges that I had, the sleep deprivation, wanting to be sort of this perfect mum that could do it all, that all really impacted my mood. And I think it wasn’t until maybe 12 weeks that I really started to feel like, “Oh, okay, I’m recovered from the birth. I’m getting a hang of this. The sleep is getting more into a pattern. I’m feeling more like myself.” I think around five or six months, I went back to work and did another photo shoot. So, that was a really big step for me in my mental state, I think to feel that happiness and it’s not been really until again, that reflection on that time. I absolutely love being a mother, but I really need to have that balance of being both. I feel happiest when I am a parent, but I’m also working.  

And so, as she’s grown older and I’ve been able to find that balance, I think I’ve found much more happiness in that state and just naturally having a newborn, you can’t have that balance because they demand so much of your attention and that’s just part of it but—and I definitely think the emotional experience that I went through when she was a newborn has definitely influenced maybe not having another child because I did find it really difficult. And I don’t feel like that’s really something that I need to go through again. I’ve done that. And there was some really wonderful times with it, but I much prefer having an older child. 

Brenda: What about all the physical recovery? You are getting your abdominal muscles, getting slim and trim as you are and getting your pelvic floor back in shape. How did you manage all of that aspect? 

Alex: Yeah. So, I definitely think, the pelvic floor thing continues to be a problem. Also, another influencing factor of maybe not having another child because I already had pelvic floor problems before having a baby from just the coughing, the impact of coughing every day and then having a baby, it just gets so much worse and I have seen specialists and it definitely goes through stages where it’s stronger, but it’s definitely a lifelong sort of commitment to try and keep that strong and keep that part working in terms of getting stronger. I went back to the gym, I think maybe when she was around 12 or, or 14 weeks and just worked on—I think it was really important to me to always have cardio in my life for my lungs.  

So, I guess making sure I had cardio that was not impacting my pelvic floor too much, but able to clear my lungs. I actually found—So, because I didn’t really like running as much after birth because of the pelvic floor. Then I started doing sort of rowing machines and stuff. And then, that actually caused really bad reflux because my body was getting crunched. So, I was scrunching my abdominal area and was actually exacerbating like the reflux that I was having at night.  

So, I thought, “Oh yeah, I’m doing this cardio. This should be making me better.” But then, I was actually coughing really badly at night and I worked out, it was actually the mechanics of that maneuver was causing me to have reflux. So, that wasn’t really a solution in the end.  

I didn’t really go back to swimming as much in that newborn stage as I probably would’ve liked to now in hindsight. I mean, I did a lot of swimming in pregnancy, but afterwards I think I couldn’t get to the pool in terms of like, it was just so much more time consuming by the time you go to the pool than you swim than you have a shower and that kind of thing, so.  

And then, I did work on doing more strength things as well, just for my muscles, which I hadn’t really done a whole lot of before pregnancy. But yeah, I’ve always kept, done a lot of exercise in my lifestyle anyway. 

Brenda: And then, your airway clearance, how did you manage to fit that in, around all the newborn and early months stage? 

Alex: Yeah, so I tried to form quite a strict routine in terms of feeding and sleeping for Ruby. And so that was the same with my physio. So, it was pretty much I would feed her or do whatever I need to do, and then it was straight away I had to do physiotherapy before I would have breakfast or anything like that. And that, it’s still the same as that.  

So, Ruby knows when we wake up in the morning, she just has her cartoon time and that’s my physio time. We basically don’t start our day until I’ve done my physio, because that’s the most important thing. Because I can’t, if I leave it and I don’t do it, first thing it doesn’t get done and then it gets missed. So, I’ve definitely been very strict with doing my airway clearance. It’s the very first thing that I do and then everything else has to fit around that. 

Brenda: And then what about childcare, when you were starting your shoots and resuming your career, how did you manage with Ruby then? 

Alex: Yeah, so that’s a really interesting question because a lot of people, when re-entering the workforce think, “Okay, well what are we going to do with childcare? Where are we going to send them?” My question was, well, I’m very worried about childcare and the illnesses that young children pick up from going to childcare and I didn’t want to be exposed to that. So, I’m very lucky to have my mother-in-law who doesn’t work and is very flexible with her time and very generous with her time. So, she definitely helped.  

And really actually Mike and I were looking just at our history over the last five years with Ruby and he’s really only worked two to three days since Ruby was born. So, we actually realized like even though in the normal dynamics of maybe a husband and wife that you think, “Oh yeah, the father’s the carer and goes off a lot.” But actually we realised, “Oh, I said, actually you are actually only worked part-time since she was born.” Because he’d often have different days off so that I could shoot. So, really I’ve been the primary income earner and he’s had to drop down and only do two to three days a week. So, I don’t think that I would’ve been able to work as much if Mike wasn’t that flexible because I just didn’t want to do the childcare thing and be exposed to all those germs.  

And as Ruby got older, I’ve been really lucky to have a nanny. She’s just a young girl that lives down the road that I just I pay her $25 an hour. But sometimes she only comes two to three hours a week. And that might just be just so I can fit in doing some like treadmill or going for a run, doing a bit of extra physio or going to my hospital appointments and things like that so that I can share the load between my mother-in-law, Mike. And then if I need extra time, I’ve always got Abby that helps me too. So, it’s definitely a village of people that help me with the childcare side of things. 

 

Music break 

 

Brenda: So, do you want to talk a little bit about the psychological challenges of Ruby going through different stages and heading off to care as she has, and then now to kinder. Do you want to give us an idea of how you’ve gone through that psychologically? 

Alex: Yeah. So, I think naturally Ruby’s a very adaptable child. She’s been cared for by a lot of different people. She’s quite easy going, I’m very lucky in that sense. And maybe that’s because she has spent time away from me from a very early stage, even talking at six weeks when I had the tune-up. She’s just had to be around other people, rather, some families have the very nuclear family and really the mother is there all of the time. And so, that really hasn’t been like that since Ruby was born. So, she’s been very happy to go and stay or be looked after by anyone really, which I’m really lucky.  

It’s definitely been challenging as she’s got older, her understanding of my health and the experiences that she’s experienced with me. So, I have noticed that as she’s got older, she’s very reluctant to show anyone if she is struggling or she hurts herself that she is not okay. So, if she falls over and say cuts her knee or whatever, she’ll be like, “I’m okay. I’m okay.” And all of a sudden I’ve realised that this has sort of come from me because often I’ll be having a coughing fit and I’ll be like, “I’m okay. I’m okay.” And it’s like, “Clearly you are not okay on the outside. But she has sort of learnt from my experience of what I’ve been through. Like you don’t, you just push through. And that can be a good thing and a bad thing. So, sometimes I’m finding myself when she’s hurt herself. I say, “Oh, you can cry, just cry, let the cry out.” And that’s, it’s kind of like a reverse of what most people say like, “You’re okay. You’re okay. Don’t cry.”  

And so, it’s really, I guess I’m very in tune with that kind of thing, and I’m always looking at like how is my health or our situation maybe affecting her. Maybe I overthink things sometimes. But I have definitely noticed that through a lot of my health things she has started to pick up on, on just the way that I deal with things.  

But she definitely understands that my lungs don’t work properly and that I cough often and often when I’m coughing, she’ll go and get me a glass of water or she bangs me on the back, like how Mike does. And I’ve heard her sometimes saying, if I’m coughing and there’s like other kids or something, she’ll say, “Oh my mum’s not sick. She just coughs all the time.” So, she’s sort of getting those understanding, but I definitely think I’m prepared for lots of questions and lots of conversation when she gets older, because yeah, it does affect her, I think in the way she’s brought up, 

Brenda: Do you want to talk about how your lung function and your general health has gone in these three years or so? Three, four years since you’ve had Ruby? 

Alex: Yeah. So, it’s definitely been a roller coaster and, I guess, the biggest challenge of having a child is that you’ve got two people to look after. You’ve got yourself to look after and then another child. And then, Mike and I almost talk about our health as our second child. It’s our first child and Ruby’s our second child. It’s been a lot of work. And as I mentioned in our previous podcast, it’s definitely a juggle and I call it sort of a tilt. So, sometimes I spend a lot of time on my health and then other times I spend more time parenting and other times I spend more time on my work.  

And so, it’s definitely a juggle. I’ve probably over the last couple of years probably had more tune-ups than I had previously. And I guess that’s times of just maybe struggling with that juggle and not spending enough time on my health. So yeah, there’s definitely been times where I’ve been in hospital for a week and then hospital in the home for a week. I’ve had some exacerbations in terms of hemoptysis, which has caused a little bit of problems. I also had, it’s not really cystic fibrosis related, but a bit of a heart problem as well.  

So, there’s been lots of trips to hospital. My lung function is around 65%. I would like it to be higher, but I just can’t seem to get it up any higher than it really has. And it’s probably stayed stable like that for the last three or four years. I do notice the impacts of that. If sometimes I do struggle physically to keep up with Ruby, she’s obviously very active, wants to jump on the trampoline, wants to go for bike rides, go for walks. And I try my hardest to keep up, but I do notice sometimes like I just physically am out of breath and can’t do some of those things. And I’m really lucky that Mike is very much the active outdoors parent. So, he’ll probably do more of that side of the parenting. And I’m happy to sit inside with her and do craft and things like that.  

So, we try and balance our parenting in that way. But I do often think like, “Oh I can’t run with her and I can’t keep up.” And that’s probably because of my, my lung function. And sometimes she does get annoyed, wants me to play in the mornings, and I can’t because I’ve got to do physio and I’ve got to be quite strict on that. And I find that a bit challenging as well. So yeah, all in all my health is stable, but it definitely, I have to constantly keep a check on myself to make sure that I am spending enough time to look after myself. And maybe, I just said to Brenda, before we started today, maybe I need to start saying no to a couple of work jobs that are coming in because the balance is slightly tilting out the wrong way. So, it’s constantly having those conversations with myself, am I doing enough? Should I say no? It’s different week to week. It’s definitely not the same every week. 

Brenda: Yes. You were just saying before that you had just done a big shoot all of yesterday. So, you’ve come in this morning sort of having just recovered from that. 

Alex: Yes. 

Brenda: You do an amazing job and it’s really remarkable to hear how your family has adapted to all of this that I’m sure can be really helpful to lot of other people to hear your story. 

Alex: Yes. 

Brenda: If you were to summarise, to meet a new mom in the park who says, “Oh, I have CF and I want to have a baby. What would be your advice? 

Alex: Oh yes. There’s a good question. I think if you were thinking about having a child, I would think about, I guess, not just the pregnancy and not just having a baby, but the longevity of having a child, because I think probably prior to having accessing Ivacaftor which I’ve been on for 11 years, becoming a parent, wasn’t really part of my future plans.  

I really didn’t feel like I would be healthy enough to look after a child for its entire life because the future just was so unknown and my health was so turbulent. And then I guess after getting Ivacaftor and seeing the stability that, that brought to my health, the conversation and the path forward did change and it wasn’t until I’d been on Ivacaftor for four or five years and saw the stability and felt a lot better that I started thinking, okay, I could be a parent and it definitely wasn’t, “Oh, I think I could just get through pregnancy and have a baby. It was, “Do I think I am able to see this child go to school and graduate from high school and have a job and potentially get married or see the child’s grandchildren?” 

And until I felt, I mean, obviously no one knows their future. Until I felt that I could answer that confidently and think like, “No, I, I really do think I’m going to have a long life, that I’m going to have a life as long as say, anybody else that I really thought, no, this would be fair to have a child. And I think that you really need to consider that. It’s a responsibility for 30, 40 years. It’s not just getting through pregnancy and surviving through that. And I think it then leads into the question of when you, lots of people now say to me like, “oh, you’re going to have another one. Are you going to have another one?” And I, that kind of conversation in my own head comes up again. Well, would that be fair to my child and to myself. And the answer is probably no.  

It’s probably not fair because I’d be spreading myself so thin and then maybe that would cut my life even shorter. And then, I might miss out on all those things because I’m having to look after two people and myself. And so, I would say, yeah, really think about, the future, and obviously that’s always unknown, but you’ve got to do everything in your own power to keep yourself well, and we are so lucky to have access to these new medications, but it also takes a big part on your end to keep up the physio, to keep up the exercise, to make sure you have a lot of people to support you, because you really aren’t going to be able to do it on your own. It’s very, you can’t compare yourself to other parents who don’t live with a chronic illness because it’s such a different experience. So, I think, yeah, that’s probably my best advice. It’s very long winded advice. 

Brenda: No, it’s a wonderfully encapsulated summary of it all. What do you think about the importance of having a partner with you? Do you think that has made a big difference? Having Mike been so supportive and not working full time? 

Alex: Oh, 100%. I think too, as I talked about my identity, my work was such a big part of my identity. And I thought that maybe when I was a parent that would make me whole, and it wasn’t. It wasn’t that it didn’t make me whole, it’s just that I needed lots of different parts and that meant working. And so, I’ve been so lucky to be able to find that happiness and that balance, but only because I’ve had Mike. If I didn’t have Mike to make those sacrifices, I think I would’ve struggled. Because I just don’t think that I would’ve been happy just at home all the time, just looking after myself and just being a parent.  

I love it so much, but I need to have that balance. And I guess it meant that I had to make harder choices in terms of, yes, putting her in childcare. Yes, being exposed to those illnesses. Yes, maybe being hospitalised more or not having as much time to look after myself. And I think it could have been a downward spiral quite quickly if I didn’t have that help. And yeah. I mean, I don’t want to say that you can’t do it on your own, but oh my gosh, it would be so hard to do it without the extreme amount of support. Living with chronic illness it’s a lot of work. 

Brenda: Thank you, Alex. You’ve just done such an amazing job, again, of being so generous with your inner feelings, your inner thoughts and your whole experience, and you’re an absolute inspiration to us to see how your family’s managed all of this. And who knows the future of gene modulators, may come into the play and make things even better in the future. We certainly hope that might be the case for everyone. Thank you so very much for sharing all these very intimate parts of your life with us. We really appreciate it. 

Alex: Thank you so much, Brenda. 

Jen: Alex and Brenda, and Alex, I have to just say yes, very, very open and honest and sharing with intimate thoughts, but I just, you are an incredibly insightful individual and so reflective of what you have been through, and you can see how clearly you use that moving forward to continue to grow and what an inspiration for Ruby. I know you expressed seeing Ruby fall over and sort of say, “I’m okay. I’m okay.” And all of us as parents sit here going, “Oh my God, we do that to our kids. We do.” We get them back up and we say, “You’re okay.”  

And living with CF, you have developed so much resilience yourself and have continued to strive to do what you want to achieve in life. And she’s seeing that every day and that is reflected when she falls over. And I hear what you say. There’s some positives and negatives to that, but I think the way that you just demonstrate how open you are with us that is obviously your relationship also with Ruby. And I just think she’s a very, very lucky girl to have you as her mum. 

Brenda: Absolutely. 

Jen: And I think for people listening, for those of who are moms listening, that don’t have CF who all know how crazy busy life is, and we can’t even comprehend how you then put in managing a chronic health condition. And that juggle of knowing when to say no, but wanting to say yes all the time, but recognising how you have to look after yourself. And I’ll never forget the analogy that, that someone told me, when you’re on the plane and they say, before you, if you have a child with you put your oxygen on before you give it to the child. And before I had kids, I was like, “Oh, that seems a little bit nasty. Aren’t you meant to put it on your child first?” But if we don’t have enough oxygen as a parent, how can we do positive parenting? And you have just encapsulated that so beautifully of how to manage a chronic health condition, where you do have to prioritise your health. 

And so, if that means doing your physio first and foremost, so that then you can enjoy the rest of the day, but longevity, you can have good health. So, you can be there as the mom that you want to be. But also the amazing career that you are also forging forward with too. And as Ruby gets older, she’s going to love that she gets to watch cartoon.  

Brenda: We had a lovely chat on Friday afternoon about all of this, and I heard a whole of these insights, which just blew me away. I just went away thinking, “Oh my goodness. I always knew Alex was the most inspiring person, but takes it up another whole level.” And couple of times today, as you’ve been talking, my eyes have teared up just listening to your incredible story of your relationship with everybody and yourself and your insight and the way you’ve applied it all. Something that Jen and I will never forget. 

Alex: Well, thank you so much. 

Jen: Oh, no, no, this is definitely—both these sessions are imprinted for sure on my mind, Alex. And I think that insight, it’s really hard for some people and particularly you, you found it as well on that day three when you are in it. It’s hard. Often you can’t quite understand that until you have the opportunity to reflect. But I think the fact that you wrote down what you were feeling and so many people will have experienced similar things, but can’t necessarily articulate it.  

And so, being able to hear you articulate that almost can give them the confidence to reflect as well on some things they’ve gone through. And life is life, isn’t it? We’re making it up as we go, really? And no one ever gave us a rule book about how to be a mum and no one ever gave you a rule book of how to be a mum with a chronic health condition. But I think you are doing what you feel is right for you, taking on the advice when it’s there, but ultimately doing what feels okay for you and Ruby and Mike and all the while being insightful, watching, learning. And you can hear the immense gratitude that you have as well for everyone around you that is allowing you to have a wonderful life. And so, you should. That’s what we should be doing, shouldn’t we? 

Alex: Yes. 

Jen: Living our best version of our life. 

Alex: So true. So true. 

Jen: You are inspiring. So, I think even whether it’s more podcasts, we’ll have you, whenever you want to chat with us, but yeah. I wish you all the very best in your journey with Ruby and it’s just been wonderful to be able to be this little part of it and share and listen. So thank you, Alex. And Brenda, thank you for bringing to it that relationship and rapport that you very clearly have with Alex over the years of being her physio. 

Brenda: Yes. Well, I just feel incredibly privileged. I always have, since Alex was a little eight or nine year old, I’ve always thought what a privilege. 

Alex: Oh, thank you. Oh, thanks so much. 

Jen: Thanks so much guys for today. And please just remember to check out CFPhysio.com and CFStrong for more podcasts and we look forward to chatting another time I’m sure.  

We hope you’ve enjoyed listening to this podcast. This podcast series has been made possible through the support of Cystic Fibrosis Tasmania and a circle of care grant with Vertex Pharmaceuticals. Thank you to CFStrong for their support and collaboration on the series. We can find this podcast and more on CFPhysio.com, CFStrong or your favorite podcast platform. 

Hear more from Alex on pregnancy and parenthood

This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. Take a journey with Alex, as she shares her experience with Dr Brenda Button of planning, preparing and embarking on pregnancy with CF. Alex is a talented photographer, partner, mother, and strong advocate for her healthcare. This podcast provides insight on so many aspects of living with CF, with the key message: rally your team, create your village, and live the life you maybe never dreamed of.

CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more.

 

This podcast was published in May 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.