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Friends, we're all back together for the next episode of the Juice Box Podcast. Welcome.
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Well hi Scott. My name is Agatha. I live in Australia on the east coast in a place called the Gold coast and I'm the mum to ava who has type 1.
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Check out my Algorithm Pumping series to help you make sense of automated insulin delivery systems like Omnipod 5 Loop, Medtronic 780G Twist, Tandem Control IQ and much more. Each episode will dive into the setup, features and real world usage tips that can transform your daily type 1 diabetes management. We cut through the jargon, share personal experiences and show you how these algorithms can simplify and streamline your care. If you're curious about automated insulin pumping, go find the Algorithm Pumping series in the Juice Box Podcast. Easiest way juice box podcast.com and go up into the menu. Click on series and it'll be right there. Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. This episode is sponsored by Cozy Earth. You can use my offer code juicebox at checkout to save 20% off of your entire order@cozyearth.com everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available@cozyearth.com just use the offer code juicebox at checkout. Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the mini med 780G system and their new sensor options which include the Instinct sensor made by Abbott. Would you like to unleash the full potential of the MiniMed 780G system? You can do that at my link medtronicdiabetes.com Juicebox the podcast is also sponsored today by the Contour Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you@contour next.com juicebox well hi Scott, my name is Agatha.
B
I live in Australia on the east coast in a place called the Gold coast and I'm the mom to Ava who has Type one.
A
I really appreciate you doing this. Thank you. We do have to tell people what time it is for you.
B
I thought we could avoid this. It's early. It's 3:35 in the morning.
A
Why did you want to avoid? You don't want people to think you're crazy.
B
Yeah, kind of. Even I think that this is a bit early. I'M I'm an early riser, so I'm not the type of person that would want to talk to you at midnight my time, but 4:30 would have been slightly better.
A
I hate to say it, but we could have done it later if you wanted to.
B
Oh, God, don't.
A
Sorry.
B
I don't want to hear that. Okay.
A
Okay. This was the only time I had available. There. Does that make you feel better? Yeah, yeah, yeah, yeah. You have how many kids?
B
I've got two daughters.
A
Oh, awesome. How old are they?
B
So Ava, she's five. She's my. My daughter with type one. And then I have another daughter, Ayla, who is three.
A
Oh, pretty names. Very nice.
B
Thank you.
A
Well, of course, when people hear Gold coast, they immediately, if they're not from there, start asking you about sharks and things like that. I'm not going to do that. I just want to know if that's what happens.
B
I think when people hear that you're Australian, you get asked about sharks and scary insects and spiders and things, things like that. But the Gold coast is beautiful. It's kind of our, I guess, version of Miami. Lots of beaches and warm and people come here for vacation. So a lovely part of the country.
A
Very nice. It's awesome. Okay, so these two little girls of yours, when was you said Ava has type one?
B
Yes.
A
How old was she when she was diagnosed?
B
She was two, nearly three. So April 2023. So we'll be coming up onto three years soon.
A
Okay. How did you find out? Did someone tell you or did you figure it out?
B
I figured it out. I'm pretty proud of that part. We had that day been at a birthday party. One of Ava's friends, we'd just been at a park, and it was one of those places where there were no restrooms about, and she just kept needing to use the bathroom. And so we kept finding a tree that she could go and do a wee behind. And it just struck me as really unusual that we were there for two hours and she just kept needing to go to the bathroom. So we came home from that and I immediately jumped onto Google and started asking questions and put in there that she'd been drinking more water and using the bathroom more and it popped up with Taiwan.
A
Wow. That. So one day, just one day's events got you right to Google. Was it just that one event? Like, did you literally figure it out from one day peeing on trees? Or was there stuff before that that culminated?
B
I think that's kind of when it all crystallized for me. She wasn't terribly like, I listened to your podcast, listen to stories. She wasn't like, obviously unwell in any other way. You know, I think I had noticed that she'd been drinking him or water. She just started daycare. You know, it's one of those things where you rationalize behavior. Lots of kids are drinking more water, she's drinking more water. There wasn't a huge amount that I can point to that kind of felt like there was something wrong. It was really just that day. I just thought, okay, I gotta sort this out. Like, whatever's happening here, let's work it out. And so took her to the doctor and the doctor looked at her and said. I said, you know, I hope this isn't type one, but, you know, I just wanted to get her checked out. The doctor said that if she had type one, she would be much sicker. Didn't want to finger prick her or do anything like. And sort of gave me the choice as to whether we do that. And I said, well, we're here, let's do it. Now when I think about it, it feels odd, but she finger pricked her heel even though she was. I don't know. Anyway, I just now think about it and just think. I'm not sure if she had many people come in with this, but, you know, checked her blood glucose and it was high. And then, yeah, that was. It sent us to the AR and emergency room and. And it kind of all unraveled from there.
A
Is there like more to that part of the story? The doctor didn't want to do it, but left it up to you. I always find that interesting when they say, like, well, I wouldn't do it. I don't think it's right, but if you want me to. Okay. Like, what is that all about? You know what I mean?
B
Yeah, I don't know. I mean, she'd done a, like a test. Like we had some of her, like we in a cup and she tested it and I don't know why it didn't show up with sugar or why she couldn't get an answer from that. And then didn't want to do the finger prick, but okay. I don't know. I mean, she really didn't look unwell and I think we caught it quite early. I can't remember what her A1C was on diagnosis, but you know, that was kind of one of the things that was hard about the whole situation is she seemed pretty okay. Like I went from having a kid that was at a birthday party that was healthy and well, to having a kid, you know, who wasn't like pretty quickly and not with like a lot of significant physical symptoms that showed me that something was wrong.
A
How did that impact you and her actually, I mean, she's not even like complaining about anything. She just peed a couple of times at a party. So, yeah. Was that difficult to. I mean, she was younger, but was it difficult for you to accept?
B
I mean, I think it was, yeah, I think so. I'm grateful we didn't have the trauma of, you know, dka and I mean, all this that I hear, yeah, that can go wrong and how far down it can go. But it was a real. Yeah, it was difficult. It was definitely difficult to just get my head around. Everything is different now and we have to adjust to doing all these things we didn't have to do before and think about all these things and just kind of complicate life a little bit more. And my other daughter at the time was I think 10 months old. So I was still kind of in that haze of looking after a newborn and trying to work out how to adjust. Adjust to life with two small children. So then kind of throwing that in felt like a lot of the time.
A
Yeah. Do you work full time, part time or not at all?
B
I do work. At the time I was on maternity leave with my, my second, but I'm a lawyer, so usually I work and since having both girls and going back to work, I just work part time.
A
Okay. Okay. So you had been, you had the baby and you were still. How long do they give you in Australia after you have a baby?
B
We're pretty lucky here. I mean, I took a year off with her, but I think I can't remember exactly how much you get paid. You can either get paid by the government or you can get paid by your own employer. And the employer might give you a better amount, but I think I had like three or six months paid off and then the rest was just self funded time off with the baby.
A
They were happy for that. Like, is that. I know it's not what you're here for, but do you feel any weirdness when you come back? You're like, hey, look who's back after a year. Awesome. Or they not treat you that way?
B
No, it's really very normal. Like most people take a year. Some, I mean, I took with my first. With Ava, I took nearly two years off and. And then with Isla, I ended up taking 18 months off. So I had a bit of a gap between stopping work and then going back to work and I think it depends where you work and who you work for. But I'm lucky that I've got a good. I work at a good place, and they value me and other people that work there, and they're happy for you to go and work, sort out that part of your life, and then come back when you're ready.
A
So it's nice here. We say that, but then treat you very poorly for doing it.
B
Yeah. Yeah. No, no. I mean, I don't know if it's like that for everyone, but that was my experience, and very nice. Yeah, it's. Yeah, it was. It was. It was good to have that time and ended up having some time to kind of work out how to look after Ava as well. Like, pulled her out of daycare, you know, tried to work out how we do the insulin thing and how it all works, and it kind of gave us six months before she sort of went into. Back into care.
A
When you said that everything's different now, did you mean just, you know, the nuts and bolts of diabetes is in your life, or did you mean that it's fundamentally changed other parts, too?
B
I mean, yeah, it's changed a lot. And, like, I don't know if that's a bad thing to admit, but it's changed the simplicity of doing things, you know, with the family, going to a birthday party is really different now to how it was back then. All those. All those little changes. And it's. I don't want to say this, but it also kind of changes your relationship with your child in a way, and not always in a positive way. And that's hard, I think, to adjust to as well. Looking after her and sometimes having her do things she doesn't want to do, that she needs to do to look after herself or make sure that she's. Well, it does feel like a completely
A
different life changes your relationship with her because you are in more of a. Like a. I don't. I'm gonna use the wrong word here, but like a totalitarian, like, you know, regime change kind of thing, like, where you're like, you're telling her what to do now, and it's not something you're happy about or something she's happy about. Are you saying, like, how you see her or interact with her or even feel or. What was it you were getting at? The Contour Next Gen Blood glucose meter is sponsoring this episode of the Juice Box podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link contour next.com juicebox you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through MyLink for the contour Next Gen and Contour Next test strips in cash. What am I saying? MyLink may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now. I can't say that. But what I can say for sure is that the Contour Next Gen meter is accurate, it is reliable, and it is the meter that we've been using for years. Contour next.com juicebox and if you already have a contour meter and you're buying test strips, doing so through the Juicebox podcast link will help to support the show. Friends, I just placed my order@cozy earth.com they're today's sponsor and I'm here to tell you about them. Use my offer code juicebox at checkout when you buy and and you'll save 20% off of your entire order. That's everything in your cart@cozyearth.com save 20% with the offer code Juicebox now why am I excited? Well, I just ordered the Cozy Earth blanket. It's the viscose bamboo blanket. I'm super excited about it. It looks comfy as can be and it's going to go so well with the sheets that we already have from Cozy Earth now. Yeah, I'm a bit of a Cozy Earth convert, I guess. I'm sitting here in my joggers. I used my towels coming out of the shower this morning. I slep on my sheets last night. Slept like a baby. By the way, cozyearth.com they pretty much have everything you want. Use the offer code juicebox to save 20% at checkout on skin care, women's and men's clothing, bath and sleeping accessories. And don't forget, Valentine's Day is coming up quickly. Get those pajamas. Cozyearth.com use the offer code juicebox at checkout to save 20% off of your entire order.
B
I mean, I think kind of both, to be honest. It's definitely the okay, you need to come off the playground or you need to, you know, I need to change this site. It's not working. I'm going to pop in and and do that and then you can go back to the thing you're doing. And, you know, there's resistance to that. But, like, she's. I think, like, all these kids, I hear people use the word resilient, but they just put up with it. They accept, at this age, at least, that, you know, you're the parent and you're telling them what to do, and they do it, and they might protest to it, but then. Yet, I think it's also changed the relationship with her because, you know, when I'm reading her bedtime story, I'm also just having a look at her numbers and kind of thinking, should I be bolusing now? Because when she falls asleep, she's going to start to rise. So I need to get something going now, or should I wait a bit longer? Or did she. Did she nap today? So is she going to fall asleep? Like, it just sort of is in the back of my head all the time. And it does, I think, impact then how you are with your child, or at least it does for me. And that's something I'm trying to work on, because I don't want to put any of that on her or affect how she relates to me or relates to diabetes in a negative way as well.
A
Yeah. I'd like to share with you that I had that moment, too. It took me longer, maybe, to figure out than you did, but Arden came home from school one day, walked through the door, and I realized that I didn't even see her. I just saw diabetes and the things that I was gonna. And I. You know, I realized that every day she'd come home, and I'd say, what's your blood sugar? Because there was no. There's no sharing of CGM data. And so I had this, like, background fear that she had left school. That was the last time I knew what her blood sugar was. Cause she would text me before she got on the bus. Like, my blood sugar is this. I'm getting on the bus. And then, you know, it wasn't even that long. It was 20 minutes or so. And she got home, and that entire 20 minutes, I just thought, like, is she okay?
B
Yeah.
A
And then when she walked in, I want to make sure she's okay. And by the way, most days, she came home, she was fine, and it still didn't take the feeling away. But then I had that thought. One day, I'm like, oh, my God, I'm not even seeing her. I'm seeing diabetes. When she walks in the door, I got to stop that.
B
Yeah. And how do you stop that? Like, that's hard.
A
Yeah, I mean, I don't know. It's just time and being aware of it and putting effort into shifting your feeling. But I honestly think, moreover, it's about experience with the management and getting more comfortable that what you know is going to happen or what you hope is going to happen is actually happening. And then once you can feel comfortable that I made the decisions, I know how this works. I can close my eyes for 20 minutes and imagine where we are now. That was kind of how I, how I tempered myself with it as I started doing this thing where I thought, like, what do I think her blood sugar is right now? Based on everything I did. And the more I was correct about that when I looked, the more comfort it gave me that when I wasn't looking, what I expected was happening was happening. Does that make sense?
B
It does, yeah.
A
Yeah, it's tough. You know, it's funny because what you were describing, it's almost like if anybody's ever been in the hospital and the nurse comes in, you know, the nurse is working, they have like, things in their head they're doing and they're charting, they're testing things, and you start chit chatting with them, right? And you, when you look back, you realize you're not having a full conversation with that person. That's a person politely interacting with you while they're doing their job. And that's how it made me feel. Like you weren't really reading the book. You're politely reading a book with her while you're thinking about the diabetes. And that part makes you sad. And it should.
B
Yeah, yeah, you summarized it perfectly. That's exactly it.
A
This is my job. Be good at it. Yeah, I couldn't do that. This thing wouldn't be worth. I just want to tell you, you tell the story, I lay out the after school special feeling from it, and then we move forward. What kind of technology. Look at. People are like, oh, my God. That is. What kind of technology did you get at diagnosis? And has any of that changed? Unlike other systems that will wait until your blood sugar is 180 before delivering corrections, the MiniMed 780G system is the only system with meal detection technology that automatically detects rising sugar levels and delivers more insulin as needed to help keep your sugar levels in range, even if you're not a perfect carb counter. Today's episode of the Juicebox podcast is sponsored by Medtronic diabetes and their MiniMed 780G system, which gives you real choices. Because the MiniMed 780G system works with The Instinct sensor made by Abbott as well as the Simplera Sync and Guardian 4 sensors giving you options. The Instinct sensor is the longest wear Sensor yet lasting 15 days and designed exclusively for the MiniMed 780G. And don't forget Medtronic Diabetes makes technology accessible for you with comprehensive insurance support programs to help you with your out of pocket costs. We're switching from other pump and CGM systems. Learn more and get started today with my link medtronicdiabetes.com juicebox we left the
B
hospital with the pump. We have a Dexmont G6 and we have a YPSO pump which I don't think is available in America, but I know. Yeah, yep, people have it. Yeah, that's the one.
A
I know it, but I know.
B
Yes.
A
Yeah, right.
B
So we left with that. It's sort of interesting listening to you and you hear how lots of people have to be on shots for a period of time before they're allowed to graduate to a pump. We were never even really given the option to do shots. It was like, this is, this is the way to manage. And it was more, you know, here are the three pumps that we, you know, that we suggest you consider. And, and this was the one that was recommended to us as has the best algorithm and you know, is cutting edge and the best one available. So I mean it was a really uninformed decision because we didn't really know anything about what we were doing and just trusted the educator when she said pick this one. And I remember at the time being a little bit, I really hated the part of her being connected to like the tube. In my head. It took me a while for me to get over that because it feels really medical to have the tube. But it's been a good pump I think. I mean, I don't have anything to compare it to, so I don't, I don't really know what the alternative would be. But she's, she's fine with it. It doesn't bother her and I think it's helped us a lot. I think it's helped us kind of maybe overcome, get to where we are quicker, if that makes sense. I don't necessarily think where, where I would like us to be, but where we got there quicker and it helped. Although I feel like I've had to learn a lot about like what is it doing? You know, like how, how is this, what is this algorithm doing? How is it working out when to give more takeaway, work out more about how insulin works? Because I haven't really had to do the manual part.
A
Uh, because the. The pump's been doing it the whole time for you.
B
Yeah.
A
Yeah, I. Yeah, I imagine they're. They're showing you three pumps, and you're busy clicking your heels together, trying to go back to the birthday party, so. Yeah, right. Like, I don't. I can't hear. I don't remember a damn thing that happened in that hospital.
B
Yeah.
A
Except for one moment where they tried to teach me how to count carbs and I cried. That was pretty much all I can remember. It's like, my wife is like, why don't you come back in a bit? And I was like, thank you. So the pump's helping, but. So you're an interesting test case because, first of all, congratulations to Australia for just saying, look, take the pump. Does the government pay for it? How does that work there?
B
Oh, well, we have private health insurance, so I think that that helps us get the pump. Okay, so we didn't pay for it, as far as I'm aware. And. Yeah, so that. That was easy. That part was easy. I do know that if. If we had gone to a different hospital, we. We would have had a different experience. It's just that we happen to go to one that has this particular educator, and this is the way she operates.
A
That's how she does it. Okay. We all aspire to be. Agatha, when she said I didn't pay for it, I don't think.
B
Oh, I know. As I said that, I was aware of how that sounded.
A
You're like, I don't know. The money comes in, it goes out. Scott. I don't really pay attention.
B
I know, I know. I look, I've looked at how much these things are, and they're expensive. And I'm. Yeah, I'm grateful that we've got one, but honestly, I remember just filling forms out during that time. You know, she would send me a form, I'd fill it out, and we send it back, and then we somehow got the stuff we got, so it's all a bit of a blur.
A
I hope you're not apologizing for going to school, becoming a lawyer, and putting a couple of dollars in the bank. I think that's pretty nice.
B
Yeah.
A
So. Okay, so. So here's the rest of the question around getting the pump on, like, day one. If I just, like, came into the house all Grinch style tonight and snatched up all that pump and left, would you have the first foggy idea about what to do tomorrow?
B
I would panic. I have pens. I would probably YouTube it, and work out how to do it. Yeah, it's such a good point because I feel like if you're going to give the pump, you do need to still educate on how to do it without it. And while I have given a shot to my daughter at an appointment with our diabetes educator, like one time, like, I can't remember now, but I have a good friend who's. Who has a daughter as well, who has type one and she did that for a long time and they're now on Omnipod, but I would probably be calling her, I would be on the phone to her and saying, how do. What do I do? But, yeah, I've got the leather mirror in the fridge and I'd work it out, I guess, you know, and that's. I think this whole thing, a lot of it is like, you just sometimes have to work it out, not get caught up in the panic of, what do I do in this situation? You just have to sort it.
A
Yeah. And if we did that right now, do you know how much basil she gets a day? About.
B
So she goes through roughly in total between, I want to say, 15 and 18 units a day. Basil. Maybe, maybe seven or eight. I'd have to check. I'd have to have a look at her statistics, like, not off the top of my head.
A
But you just worked it out. You really did. So you'd shoot. But seven, probably because you'd want to be careful of a slow acting, you know, background basal insulin. And then, you know her carb ratio.
B
Yes. I mean, she's got different ones for different times of the day. Okay, cool.
A
No, I'm not asking you to. No, I'm not asking you to, like, recite them. But you know them like.
B
Yeah, yeah, yeah, they're in the phone. I would pull them out. I do know them. Yes.
A
Right. In this Australian Grinch scenario, you'd be. You'd be okay. Yeah, yeah. So the panic would come from what, like, because it's not. Is it mostly about giving the injections, do you think?
B
I don't even think so, no. I've. I've dosed. I've given, you know, the mini glucagon before. Like, if I need to do it, I can do it.
A
Yeah.
B
What's the panic? I mean, I would hope I wouldn't panic, but I'm probably. And you might have gathered this because you talk to lots of people, but I'm probably a bit of a warrior and a little bit more sort of anxious and want to get things right. And so it would just be you know, not stuffing it up and, you know, I don't know, priming it or doing whatever I have to do, and I haven't missed a step. And I've. And I've given the thing, and I've given the right amount, and it's just that kind of. I haven't done this before, and have I ticked the boxes, and it's happened the way it's meant to happen.
A
I just. I have to tell you, Agatha, when you told me you had kids and you had a female name, I knew you were a warrior then. I didn't really need to talk to you after that. I swear, I don't know how people feel, what I say, but I don't know what happens to you ladies when those babies come out. But, my goodness.
B
Yeah.
A
Keeping those kids alive and safe. But it's also. Sometimes I'm like, I. What is happening?
B
Yeah. No, I think that's right, Agatha.
A
My son on a business trip this week. He's just about 26 years old. My wife says to me, have you heard from Cole? And I'm like, no. Why? And she goes, I don't know. You think he's all right? I'm like, why would he not be all right? And she's like, do you think it's going well? And I'm like, the business trip? And I'm like, he's good at his job and he's smart. I think so. And I looked at her, I went, oh, my God. Are you worried about him? And she's like, yeah. And I was like, oh, that sounds horrible. I'm so sorry for you. He left. I forgot he was gone. And she's sitting in the corner like this poor kid. I hope he's okay. Comes back, had a great time. Everything went well. He felt real good about the whole thing. Anyway. Yeah. I don't know. Apparently, it's not going to stop, so good luck. Yeah, I'm sorry.
B
I think that's right.
A
So. But, no, I. Listen, I just think it's because something's different, right? Like you. But. But the concern is, like, if you. If you talk about how people talk about it here, a lot of the times, oh, they got to do shots for a year so they understand. Meanwhile, I don't think you need to do anything for a year to understand. If you need to do something for a year to understand it, it's possible. You're never going to understand it. I get the idea of having the experience. I don't understand why it has to be so long, but I always contended that, like, you know what to do. It's just the delivery systems different. And, yes, the pump's doing the math, but you can look at the pump and see what the math is. And just. I think that it's just the change that would be frightening and that. That immediate. Yeah. Also, I don't keep Basil and so on here. If Arden woke up and just did not have a pump tomorrow, I'd have to call a doctor's office and say, send a script to the, you know, somewhere and get me a basal insulin, because. Okay, you know, but my wife is still bad that I don't keep it. She constantly tells me, why do you not have Basil insulin here? I said, well, you've been asking me for, you know, like, 18 years. I said, I haven't done it yet, and it hasn't been a problem yet. I was like, are you expecting it to be a problem soon? She goes, you never know. And I'm like, I feel like I do know. It's been, like, a long time. Haven't needed it anyway. Are you the main caregiver for the diabetes?
B
I would say so, yes. My husband works full time, so I've got the two days with the girls and then, well, with my youngest and then my neighbors at school. So she's in more kindergarten. She starts school this year. So our school year starts in a few weeks. I'm the one that will go to the school if something's happening, and I'm the one that communicates with the teachers, looking after her, answers their questions, or ask them to do things if they need to do things. So, yeah, it's. It's mostly me. And then. And then my husband, though, obviously very capable of looking after Ava if I'm doing something or I'm away, which happens occasionally, so. But mostly it does sit with me.
A
Yeah, I wouldn't imagine an incapable guy is bagging a lawyer, so I'm good. I figured. I figured he was okay. I didn't think you were just giving that away for free, so. You know what I mean. We don't know each other well enough. Yeah, but you understand what I'm saying? And you're Australian, and I've interviewed so many Australians, I just assume you're being very reserved for some reason, but you guys are awesome. Everyone I've ever spoken to from there has, like, a kicker, crazy side to them that is really delightful. So in your note, you talk about, like, challenges of raising a young child, navigating, in your words, school and friendships. Has that Been a thing that you were worried about or a thing that was actually going wrong and difficult.
B
It's been difficult, but I think it's probably was always going to be difficult on some level. And when I say that, I mean they're not in then, you know, she's not with me, she's with someone else. And the way that they want to manage at school is having as little involvement with type 1 as possible so that they can focus on the teaching and the. And the schooling part. Whereas when she's with me, there's a lot more happening. And it's kind of finding that balance when I'm not with her that she's still looked after and she's having good results because she could have bad results and not be with me. But that's not what I'm aiming for.
A
Yeah.
B
And I guess because she's so little, you know, I can't text her and ask her to do things. I have to text the teachers. And we did have an in, you know, a couple instances last year. So she, she, she was in. In their care five days a week. She did school hours, kind of. It's the year before they start school, but they're in the uniform. They have a, you know, a kind of a proper schedule to the day that kind of follows what they would do if they were at school. And we had a couple instances where they were like, only text us in an emergency. I found that hard because I'm like, well, it's not an emergency now, but it will be an emergency in 15 minutes, potentially and more. So I just don't want her day to be interrupted and she has to sit down and not participate in gym class because she has to wait out a hypo rather than you just getting ahead of it now with something small and letting her continue with her day as normal. So it's that kind of balance between having them look after her, but also, you know, not just doing the bare minimum. So that's been a bit of a challenge. And I think we do. I mean, we do better when she's home than when she's at school.
A
Because you're more proactive.
B
Yeah, yeah, I engage with it more and I'm, you know, there's more, you know, Mike, you know, a small bolus here or picking up a drop, that kind of thing. I don't know if it's the technology or if it's what it is, but, like, we can't go a day where I'm not having to catch a low at some Point. I don't know what a typical experience is. Like, I think in an ideal world, Ebola's for the food. They eat it, the basils. Right. You know, it's mostly okay, but it's just not that simple. We, if we, if we want to have numbers that are mostly in range, then it almost feels like we have to be in that situation where we're catching lows a little bit. And, and that's annoying. At school.
A
Is that around activities? Do you think she's more active at school than she is at home?
B
We always have a drop off the back of breakfast, which, you know, I know, I know that. I'm sure that other people have similar experiences too, but it just feels like if I, if I don't bolus enough, she goes high. The algorithm kicks in. It pushes a ton of basil on her, it drops her low. If I bolus too much, it's the same effect in that, you know, basil is not bringing her down, but the bolus eventually brings her down. She goes low. So we always seem to have a low in and around when she's about to have morning tea at school. And we've had a year at school this year, and I haven't been able to fix it. Some days it's okay, other days it's not. It's that kind of thing. And then more generally, I mean, maybe it's activity, I don't know.
A
No, I, I take your point, though. You're being, being aggressive to keep a spike away at breakfast. But the insulin's lasting longer than the food is.
B
Yeah.
A
And she gets. And does it happen every day?
B
It happens most days, yeah.
A
Okay. Is there a way to add a small snack after breakfast to stop to almost pre bolusing the drop with food?
B
I think it's, it's like timing, right? Like you say, it's timing an amount. Like if I give her something to eat at the wrong time, it's just pushing it up. Like, it's just pushing her up before it starts to drop. And the drop and the sort of the curve and then the drop. She's not with me at that time.
A
Okay.
B
And that's really when she needs the small snack. But she's. It would be great if the teacher would give it to her. But like she's at school and it's not, it's. That's not, you know, the way it works. Right.
A
So I don't know how many people could hear through Agatha's accent where she was like, it'd be nice if these motherfuckers would just listen to me.
B
Yeah, totally.
A
You're bolusing, but then the algorithm, then she's getting a little high. Then the algorithm is pushing again. And you think the push is where the low comes from?
B
I think so. I think mostly when she's been home, like over these holidays, I might do a stronger bolus for breakfast and then that's sort of a pre bolus, kind of for the snack, if that makes sense.
A
Well, that's what I was going to ask. I was going to say, why don't you be more aggressive with the food? But you can do it at home. You have trouble doing it and sending her away.
B
Yeah, well, I have trouble sending her away. And I like. It doesn't fit in their day necessarily to be eating at the time when she needs to have that. That little snack. So then we end up being high and then low, rather than that food being at the right time to kind of stop that low but also be aggressive enough to address that initial high.
A
I misunderstood for a second. I thought you could make a heavier bolus that would keep the food down, which would stop the algorithm from running again. But what you were saying is you can do that, but then you have to feed it before the drop.
B
Yeah. Yes.
A
Gotcha. Yeah. I mean, that sucks.
B
How much does she weigh wearing kilos here? So she's 19 kilos.
A
I don't know. Either she's £40 or £8. I have no idea which.
B
I sound like they'd be quite different.
A
Is she like four bags of flour or. I don't know, how many kilos was it? I feel like an idiot, but 19. I know people are like, there's a very simple, you know, formula you can do to figure this out. But yeah, 41, she's five pounds of. She's four bags of flour. I was right. Don't laugh at me, you bastards. I hear you out there. Does your flour come in five kilo bags? Oh, no, she's eight bags of flour that I buy. No, she's eight bags of flour. I'm sorry, Never mind. This is why we couldn't do trade with Australia. This is what happened. Have you ever seen an AKI monitor out in the world?
B
I know what it is, but I don't know if I've seen one.
A
I've never seen one. Okay, all right. That's fine. That was my only question about Australia. Did you hear when I interviewed the CEO of Medtronic of Minimed, and she's from Australia?
B
Oh, I didn't know.
A
Yeah. And at the very end of the interview, I teased her. I was like, I wish we had more time. I'd ask you about if you have any. If you have any reptiles. And she goes, I do have a bearded dragon. And she's like, but it's. It's a. I forget what she called it. Like, there's a smaller version of them. This might be outside of you. And. And I was like, oh, my gosh. I wish I would have known that earlier. I wouldn't have asked you about all this insulin pump stuff.
B
We would have talked about this.
A
Yeah, Yeah, I think she was. Actually, the way she explained it is she was part of that kind of her words, like boat people that got, like, waylaid and landed in, like, Australia, New Zealand or something like that in that area. And then she grew up there, and it was really interesting. So anyway, that's got nothing to do with you. It's. Sorry. So my question about how much does she weigh? Was I was thinking, like, maybe this will be easier as she gains weight.
B
Oh, that would be great. Can we make that happen? Yes.
A
And I was gonna lead into. Do you think she has any kind of a honeymoon going on still?
B
I don't think so. I don't think so. I mean, we did diluted insulin at the beginning, and. And it almost feels like it was easy. It all felt like it was easier. When I think she was in honeymoon, like everything felt a bit easier. I know people seem to have trouble with it, but it seemed easier. And then one day it just felt harder. And, you know, we were getting more spikes, and so. I don't think so. I don't think that's happening, but. Okay. I don't know. I'm still new at it, so.
A
No, Yeah. I mean, so what you're really. If I'm hearing this through. Through your stories, what you're really waiting for is for her to get old enough where you can converse with her directly and start managing things between the two of you. Right?
B
I think so. Yeah. And I'm thinking about this stuff because we're. We're due to have a meeting about how everything's going to look this year. And it'd just be so much easier if I could just tell her, you know, which is what I do when she's with her grandparents or. Or even with my husband. You know, sometimes I'll message and be like, can you do this? And it's just much easier to just do it that way. Rather than have this document that says, treat at this number, do this at this number. Here are the carbs. Okay, bye. Like, it just seems so light. Touch for what it needs. Really?
A
And tell me why that bothers you. I don't disagree with you, but I want to hear in your words, like, because she's coming home alive, obviously. Right? So, like, yeah, it's not, it's not the worst thing. And you can. And I think I hear in your voice you understand their perspective too. So. But tell me. I don't care about their perspective. Tell me about yours. Like, why, why do you dislike this, this method?
B
Mostly it comes down to the fact that she's more likely to run higher and the highs are not addressed as, as quickly. And, and I get nervous when I see the drops and, and I'm not there. And it just feels like we're doing too little too late on both ends. And it just makes it more stressful. Like the day is much smoother when there is a little intervention here or there versus waiting for, you know, something, you know, quote unquote, bad to happen or we're in a bad situation and then trying to address it.
A
You're a winner, aren't you? In life, I mean, well, you're a go getter, right? Like, you get out in front of things. You don't cross that bridge. Yeah. That's all I hear, by the way. That's all I hear when I, when I'm. Or what? I mean, when I talk about like a little bit of effort now saves a lot of trouble later. And. Yeah, but they don't. This is my perspective after sending my kid through school. She's out of it now, but this wasn't about her health from their perspective. This was about not having a kid pass out at school. That's. That's really was their only goal. Like, if your kid doesn't pass out or have a seizure, then we call this a win. And we are not measuring health outcomes or happiness or anything else. Like, that's. That wasn't there, that. But that's your. Pretty much your only concern. And you've figured out a way to like, take care of it. And they, and so they're not interested because they said to you, please, only in emergencies. Do you think now here's where I'll ask you to be like a little introspective for a second. If you put yourself in their position, were you being a pain in the ass from their perspective?
B
I think in the beginning a little bit, yes. And as soon as they pull me up on it, I took the feedback and was like, right like in the spectrum of things I could be asking them to do, what, what is, you know, an emergency or closer to an emergency. So I think I, yeah, I was a little bit at the beginning and less so after that. Having said that, it is interesting of the two people looking after her, one of the teachers and all the schools here do it differently. But at my daughter's age, there's two teachers in the room, one's the assistant, one's the main teach. The main teacher was very, we don't want to hear from you. But the assistant who actually did a lot of the stuff, did a lot of the bolusing, did a lot of the, you know, hypo stuff, she would say to me separately, I actually really appreciate you texting me. I like that you're looking at it and that you see what's happening. And so I think there is an element of who is the person you get, what's their personality like and are they more willing to come on the journey with you? And, you know, we're going to face this every year. The way our school does it is every year you get a new batch of people and you have to train them up and you start again. I have a friend, her daughter, they have one sort of assistant that just looks after the kids with Type one and will go out and bolus and do the hypos and stays with them as they move in to the different year levels. And that feels like a really good, good system because it's continuity. It's one person knows them. You're not teaching people from the beginning. And I just feel the way we're going to be doing it is there's going to be that learning curve and there's going to be mistakes and then there's me learning how they are. Some people are better at this than other people. Some people are better with tech, Some people are not as good. But I think it, you know, it's, it's, it's probably just part and parcel of being a parent with, with Type one, you have to sort out how you're going to deal with it at school. But they're there a lot. They're there a lot, right. It's like a third of her life is at school. So it's important to get it right.
A
No, for sure. Does it give you any comfort that you have the whole thing figured out already? Because you're right, like, that's all what's going to happen. You're going to get good ones and bad ones and some that are interested and some that aren't and some that can't grasp it. Even this example here, the person who's hands on between you and your daughter sees the bigger picture because they're involved. And the person still in the room but slightly removed from it is like, oh, why is this happening? It almost feels like if you put. Put that person on the other end of the phone for a week and they could watch a problem stopped in its tracks before it can happen, that kind of thing, that they would maybe have more perspective or. And maybe it still wouldn't matter to them. Maybe the personality wise, they just don't care.
B
Yeah.
A
You never know who you're getting. And the problem is, from my perspective, is that every year everyone smiles and looks you right in the eyes and goes, don't worry, it's gonna be fine.
B
Yeah. Oh, I know. I hate that. I had one teacher say to me, doesn't it make you feel good that we've all done the diabetes training? And I was like, no, no, it
A
doesn't make me feel good when I'm taking care of her. And I care a lot. I always go back to the principal of my first child's elementary school, and I realized after a while that if the building was on fire, she'd say, don't worry, we got it. She was a politician. She wasn't even a teacher. At that point. You could not have said anything to her that she would not have answered back with, oh, yeah, yeah, don't worry, we got it. I was like, I know you don't. I know you don't. I don't got it. And. And I love her. You're just contractually obligated to take care of her.
B
Yeah, exactly. Exactly.
A
Well, it. Listen.
B
Yeah.
A
Episode four of the podcast is called Texting Diabetes.
B
Yeah, I've listened.
A
Not by mistake. Boy, that was one of the first things that I thought was just transformational and how Arden's health was while she was out of the house and at school.
B
So, yeah, Yeah. I mean, it's just baby steps, right, until we. We get to that and she's a bit older and, you know, she's. This year, she'll have her phone on her. Not all the time, but when she's out in the yard. And that's not something that we've done before. It's always been a teacher holding her phone. And, you know, she's. We've been practicing her carrying it on her in a bag. And, you know, it's just one of the various little things we'll do is we keep moving towards it. Her taking on more and more.
A
Yeah. You start texting her, like from other rooms of the house or when she's outside watching a mongoose in a cobra fight or whatever happens outside. I don't know exactly. You know what I mean? And then one day you'll just realize, like, oh, we have a little system here. It works. She's good at it and I can trust it. And, you know, it'll open up everything for you.
B
Yeah, it's nice.
A
It's a thoughtful conversation you're having. I appreciate how, how granularly you're talking about and thinking about just this one aspect of it.
B
Yeah. I mean, it's sort of. Yeah. It consumes a lot of my day because I'm trying to work or look after my other daughter and then also do this and there's just an easy way to make it not stressful for us and for them.
A
Yeah. Do you think. I don't want to make you upset, but, like, do you think that your younger daughter is getting a bit of short shrift because of the diabetes? Are there things not happening for her that you think would have happened otherwise?
B
I don't. That doesn't make me upset. And it is something I've thought about because, you know, it's easy to just focus on the child that has type one, I think, I don't think so. I think she, she, I mean, she's only three, so, you know, she's, she's aware but also just like living life as a three year old and easily distracted by things. So she did make a comment to me the other day though. I said something about, you know, Ava has type one, we need to take care of her. And she said, and she's three. And she said, well, I have a peanut allergy and you have to take care of me too. And I said, of course I'll take care of you and I take care of Ava and we all look after each other. So she. I don't know if there's something in that, like, you know, don't just take care of her. Take me, take care of me as well. But I try to be very mindful about that. And like, to be honest, day to day, like if we're out doing things, it's holidays now we're off doing various things. Like this does not. Like I'm not focusing on Ava, like, you know, so heavily in the course of the day, like, I'm looking at my phone, I'm making decisions, I'm doing things but, like, I'm there with both girls, and we're. We're all together having a good time doing it, whatever it is we're doing. And it's not a thing that I feel like I'm not paying attention to one in order to address something for the other.
A
Can I give you a great piece of advice that you'll ignore?
B
Hmm?
A
It's not gonna matter.
B
It's not. Oh, yeah, I hear you say this. Like, they're gonna. One day, Isla will say you spent more time focusing on.
A
Yeah, 100. Do the right thing. Because it's the right thing. But don't think that it's going to completely stop the human side of the whole thing, you know, where somebody's just gonna feel like. I remember when we stopped to do a blood sugar, and I stood there for 20 minutes thinking, like, I don't want to be doing this. And, you know, and then, you know, again, having hearing my son say, we were always involved with Arden's blood sugar and her diabetes and thinking about, like, contextually, how much time and effort we put into him, I was like, oh, that was defeating. But then to look across the room and watch Arden go, what? We were always with Cole. I was like, you've got to be kidding me.
B
But is that a bit validating because. Because you were putting an effort into both equally.
A
Yeah. And neither of them thinks they were getting any effort, by the way. But look, here it is. They're not using meth, and they haven't shot anybody. So I figure, like, we're done. Like, we did a good job, you know? Yeah. And people just want to. Like, I think that you're always going to feel that way. You know, I was telling somebody the other day, it's a weird setup for the thing, but I'm a really good dad. I'm a pretty damn good husband. Like, I'm a good provider. Like, the whole thing. I'm very focused on other people. And I have no desire for somebody to say thank you to me about it. But no one ever says thank you to me about it. Like, and I wonder. Yeah, Like, I would, like. And so every once in a while, someone will. And it's kind of like under their breath or, you know, like, that kind of thing. And you just like. You're like, oh, they do appreciate it. And I already knew that. And I really, like, intellectually, like, consciously, I have no desire for anybody. I consciously have no desire for anyone to come up to me and be like, hey, I appreciate that. When I open the refrigerator there's food in there or whatever, you know. But when I stop and think about it quietly and I. And I talk about it, like, emotionally with somebody on the podcast, I'm like, why does no one ever say thank you? And I realize, like, I'm. That's just who I am. Like, I run or I thank people all the time, or, like, what's today, the 8th? Every human being I bump into for the last eight days, and I'm usually to the end of January person, I'm going to say happy New Year to them, and I don't even know why exactly. And no one says it to me, and I don't see anybody saying it to each other in any great number. And I don't mind. It's just the thing I enjoy. But when it comes to this, like, my goodness, like, just every once in a while, I wish someone would go, like, you know, I got a friend whose dad is cheating on my mom, his mom with 13 different women. And my. This guy's over here sitting with me at the table, talking about life and doing stuff. And. And then, you know, I don't know. I don't know why people's minds work that way, but I guarantee you, those two girls are going to think you paid more attention to the other one when this is all over. Have you. Do you have brothers and sisters?
B
No, I don't. No. I'm an only child.
A
So you knew you were the favorite.
B
Everything about. Yeah, well, yeah. I mean, there was no one else to like, so they were stuck with
A
you one way or the other.
B
That's it? That's it.
A
Does your husband learn about the diabetes sort of through you, or did he have his own path to figuring it out?
B
He was in the hospital with me because we were juggling having the baby as well. He was often there, you know, learning how to fill a cartridge and, you know, do all that kind of stuff. Not that he remembered any of it. I laugh because I think about him watching the de. Talk him through it, and he's nodding and, like, I can see that he's not taking any of it in. He doesn't do a lot of that stuff at home. I do a lot of that stuff. But in terms of learning, you know, what she needs and when she needs it, I think, yeah, we've sort of done it together, and he's around enough that he can actually, like, learn it, like, and. And do it. And there are times when I'm away and he has to do it, and so he. He. He's Kind of, we've kind of done it together. But like, I think I've probably moved on faster than him just because I do it more often.
A
When you're away, is it like a pupper master situation or is he doing it like on his own autonomously? Are you helping and like filling in gaps?
B
No, he mostly does it on his own. Like, I don't, I don't tend to. He's pretty, he's pretty good like that. Like, he's like, you're, you're doing the thing, the work thing or the whatever thing. And, and I'm doing this, so it might not look the same as if I were doing it. He also doesn't necessarily, like, bowl this dinner every night and he doesn't know exactly the way I do it to get where we get to by the time she's going to bed, where we want to be, that kind of thing. So he sort of works it out himself, but he does a great job. He's hands on and takes it on and works it out and kind of goes with it. And he's, he's the calm one. Like, he's, he's, you know, he's like, okay, you know, well, this is happening. All right, that's fine. We'll, we'll address it this way. And he doesn't get too caught up in being worried or stressed or anxious about what might happen.
A
Kind of a guy's guy about it like that?
B
Yeah, I think so.
A
When he's managing it, outcomes are the same, but the pathway is different. Or is it that feeling like when she's at school and you're like, oh, listen, she's okay, but I don't love how we did this.
B
I'm conscious he's going to listen to this. So I'm thinking of how to respond.
A
Well, hold on. Before you respond, let me say this. I've never, I don't usually do this this way. You seem like a pretty smart person, so you're going to figure it out if you haven't already. I don't care about how your husband manages your kid. I'm trying to get you to decide whether or not what's happening at school is okay or not.
B
Ah, okay. I don't think outcomes are always as good when he does it as when I do it, but they're not far off, like, they're close enough. And also, I so rarely do go away and do do things where I need to be focusing on the other things solely that I just accept it in those instances like this Is his thing. He's got it now, if this is okay for two days.
A
So then my question. Is it a management issue? Not issue, but is it a question of management or is it a question of control? What a conversation to have at 4:30 in the morning.
B
I know you're really working my brain. See, like I can. I'm happy to relinquish control when he's, he's doing it because I trust, I trust him and I really trust these people at school.
A
Ah, okay. Is there a central person at school that we could make a trustworthy person, like an overseer on site?
B
It changes every year who she has.
A
What about a nurse though? Is there a nurse in the building?
B
So, I mean, we're still new to the school, but. And this sounds very different to what I think happens in the US But I don't think the nurse, I don't think the nurse looks after these kids like the nurse looks after all the boarders. Like, I've never met the nurse. I mean, we've been there two years, one year part time, one year full time before she's gone into sort of the junior school, so more in the kindergarten program. And I've never come across her. She's not been involved in anything. It's been the teachers.
A
That's odd, isn't it? I mean, it is to me it's odd. Yeah. Has she never.
B
I think it's odd too.
A
Yeah. Has she never been to the nurse's office?
B
No.
A
So if she gets, if anything's, if,
B
if anything happens to her, I go,
A
oh, how far are you from the building?
B
When I say anything, I don't mean anything like if, if she needs a site change, like she's pulled out her side or something. Like, I go figure, I go do that. Okay, Yeah, I go do that. Or if she's running. Well, if I just don't like the way something looks, I go, sorry, you were asking a question.
A
No, no, hold on. I'm sorry. I think I left my phone off of silent. Listen, you're not going to get me to judge you. I mean, you've probably heard this. I've run from the shower to this. Yeah, I ain't judging you, but I was wondering, like, could the nurse not be a go between? Like, could you not go to the nurse and say, look, here's what we're trying to accomplish. It's going really well. We just need some more touch points. The, you know, the teacher seems to feel like it's too much. I don't think it Is, you know, I'm trying to. I'm trying to have good health outcomes here, set up a standard for her so she feels well. You know, I'm not sure how much you understand about diabetes, but, you know, balancing blood sugar, high blood sugar, could change, you know, the way she, you know, interprets the world and how she learns and everything. Do you see a pathway here between this in the time when she and I can start texting directly and take the teacher out of the loop, you know, or is there a way maybe you could go to the teacher and explain that, like, what I'm doing is not insane unless the nurse looks at you and thinks it's insane, and then, you know, then you're stuck. But I also don't think it is either. I'm telling you right now that. That I believe that texting is the unsung part of the diabetes technology. For. For caregivers, that's very important, because the sooner you act, the fewer times you get low, the sooner you can bolus, the fewer times you get high. If you don't get high, you don't get low later. You know, there. There's just a ton of reason to be ahead of the game just a little bit. And that is a difficult thing to explain to a person who's just worried about you, like, falling over and not about the rest of. But I. I had an experience where when I explained the rest of it, I found some humanity, you know, And I said to people, like, look, I know you think this is about today and about her not getting dizzy or passing out or having a seizure, but what I'm telling you is this is about how she feels about herself, how her body works, and what her life's gonna be like in 10, 20, 30, 40 years. You can't just tell me I have a bunch of kids with diabetes running around the school, and they're all fine, except I know some of them, and a lot of them are running around with 9A 1Cs, and that's not okay. Can we be more holistic here? And I. I was able to eventually find somebody who was willing to think like that with me. And in the end, Agatha, in the end, what that meant was they just left me alone. They didn't really get involved. They weren't helping make it better. They just decided to stop breaking my balls, and they backed up. That's pretty much how it went. That makes sense. But I don't. I don't know if you have that ability to. To get involved in that or not.
B
There's Well, I mean, I think that broader picture of the implications beyond today, that conversation, like I can have that conversation when I meet with them in a couple of weeks. That's the teacher and maybe it's the sort of the head of the junior school I can ask about if the nurse gets involved. But yeah, I think I'm just pushing for this time when, you know, I can cut these other people out. It can just be me and her. I mean, we're nowhere near it right now, but it just feels like that will be a big game changer.
A
Oh, I happily agree with you. I. I mean, you're talking to a person who like, put their kid on the bus and was like, I don't know who that person is driving that bus. I'm not distrustful, but like, in normal, like life, I'm happy. Go lucky, live and let live. I'm not distrustful of anybody really. It's when it gets around my kids health or their safety, then I'm like, hey, I don't know where we're all coming from right now. And I don't think that's neurotic, by the way. I think that's fairly reasonable.
B
Well, yeah, and people don't really understand it until they actually look after someone with it or have it themselves. Like, it's just not something that you can explain. And then someone really has a grasp and they're good to go. Like, you know, I similarly don't trust anyone really with her. If she has an extracurricular activity after school, I'm not in the room with her, but I'm in the car. Like, I'm nearby. I, you know, I. These teachers, they hold her phone and they'll respond to a text that I send them to give her something, but I still don't necessarily fully trust.
A
Yeah, hey, listen, I'm with you.
B
I would try, but you know, then it's just this balance. Like, it's just a lot. Right. Like working and doing that and having another child. Like, it's like a lot on the plate to kind of get through and juggle it all. And then also like, try to preserve Ava's mental health in all this and not push worry onto her and make
A
her and yours too. Yeah, yeah.
B
I mean, mine.
A
I mean, yeah, you're like, that's too late for that. You're fighting too many wars on too many fronts is what ends up happening. Yeah, you get stretched too thin and you can't do a good job at any of them and you don't know who you're gonna bump into when you explain this whole thing. Like I said, you might get somebody who's like, oh, I get it. Yeah. Right on. Let's do it. And you might get somebody that looks at you and waits for you to walk out of the room and goes, this one's out of her mind. And also, it occurs to me that you have another concern that it didn't occur to me right away, but you also run the risk of leaving the room and having somebody go, oh, lady lawyer's pushing us around. Do you worry about that, too? Like, the idea of, like. Because when I'm pushy, it's assertive, and when women are pushy, it's bitchy.
B
Yeah. Or bossy.
A
Yeah, right. Or bossy. Or whatever. Right. And then. And on top of that, you're an attorney, so people already don't like you. I don't know if you're aware of that or not.
B
No, I'm aware. Yeah.
A
Okay. All right. But, like, seriously, I, I, I don't know if I've just unlocked a new concern or if that was something you consider day to day when you're talking to people.
B
You know, I don't, I don't even really know if the teachers that I'm dealing with, like, in that context or all the, the dance teacher or the, whoever even knows that about me, to be honest. Like, I'm not, it's not a thing I open with or a thing that I drop into the conversation. Like, I'm just Ava's mum and probably annoying.
A
I wouldn't tell anybody if I was you. I keep it to myself, make a
B
habit of it, really. So I don't know. I think, I think, I mean, mums in general, I think, like, the same way we worry. And we can also be pushy and be pushing whatever it is we want to push in relation to our kids. So I probably just fall into the same bucket as any other mum who's wanting a particular outcome for their child and persistent about getting that outcome. So, yeah, I'm not sure if it's worked against me. Maybe it's helped a little bit when I'm having a, shall we call it, discussion about things. But on the whole, I'll use what I can to help me, but I'm not sure, I'm not sure if all that much is helpful sometimes in these conversations. Yeah.
A
The more conversations I have like this over the years, the more I'm certain the thing that helped me the most is crazy to say, but they missed something. And Arden Got really low on the playground when she was young. Like, I think in, like, second grade.
B
I remember this story.
A
I think that bought me the latitude I needed to put everything else into place. And without that, I probably would have been stuck in this argument forever because, you know, I mean, fair to say I was fairly ahead of the curve on how people thought about type 1 diabetes, you know, 15, 20 years ago. And so, you know, they really were. The entire answer I would get was, hey, we have a bunch of kids in this school with diabetes, and a lot of them have come and gone. They're all fine. I'm like, do you know any of them anymore? And they're like, no. I'm like, how do you know they're fine? You just mean they didn't die that day, right? Like, is that what you mean? Because, you know, I know another person in this building, and the kids. A1C is high, and I'm not okay with that. And, you know.
B
Yeah.
A
And that they didn't care about that. It was the day that they. That the system they put in place failed, that I was able to raise a hand and go, I told you. Now, now we're going to do it my way.
B
We've had a bit of that. We have had a couple instances where something like the wrong amount's been bolus, like, double the amount that's meant to be bolus for something like. And. But I've not made a huge fuss about it, but it has helped me get leverage with the teacher that's maybe been involved in that particular thing. And then they're them. Them. I think that's helped them. Then listen to me and kind of go, okay, you know, I'm listening to you like, I'm glad you're watching this. I'm glad you're involved. But maybe it's a thought about whether it's something to escalate. Like, it's. It's. It's all. You know, there's, like, politics in this, too. You. You don't want to put people offside. I don't want people to be like, oh, God, here comes this, like, this woman who's difficult and painful, but equally, I want people to do what I say. So where do you. Where do you. You know, where do you find that balance?
A
I mean, Agatha, I do it the way I do everything else is the realization that everything is power and a negotiation, a long negotiation. I mean, I'm in a. I'm in a long, protracted, slow chess game with somebody. That probably sounds so cynical. Do I just think that, you know, whether you're considering your relationship between you and your kid's teacher or how you feel about global politics or anything in between, everything's pretty much power. It's power and it's who puts things in, in position to work for them. And you can't rush it. It has to go slowly. There's a give and a take. And you can't out yourself as a lunatic while any of it's happening. So it's, it's just slow and steady and try to stay, stay a little ahead and a little on top. And if you don't think that's how the world works, then you and I don't see the world the same way.
B
But no, I.
A
You agree?
B
No, I agree.
A
Yeah. Yeah.
B
Yes. No, I do agree. Yes.
A
Every relationship you're having, people listening, whether it's between you and your mailman or you and your husband or anywhere in between, this is going on in micro ways that you might not even, or you may be completely aware of. So, I mean, my wife beat me years ago. She got ahead and I was like, oh, hell, I lost the high ground, I guess. I'm the grocery. Okay, I'll go get the grocery. I said no. I thought I was just being nice. I didn't realize she was setting a standard. Damn it. Anyway, I like how reserved but in the. I feel like if you and I weren't being recorded, you'd be a completely different person.
B
I do think so too. It's hard.
A
Yeah, it's okay. You're doing a great job of laying this. I like, you know, I like free flowing conversations, but I also like, really, I like granular conversations about, about specifics too. So is there anything that we missed or kept out of here before you go back to sleep?
B
Well, I'm not going to go back to sleep. It's now the start of the day. No, I don't think so. I mean, I just wanted to also mention, because I love how you do all those series on all the different pumps and things like that. And I guess because the one that Ava's on isn't as represented in the US we don't hear as much about it. But I just wanted to, you know, mention that one as well, the, the ipsumed pump and, and ask if you'd ever think about, you know, putting anything together about, you know, how to use that and how to set that up. I don't know if that's possible, but.
A
Well, it's not. Not possible. I would just have to Reach somebody at the company. I actually just got done recording with Tandem about one of their device. Well, their device and because more about their algorithm, really. But hold on, I'll. I'll see if I can find somebody because, I mean, the podcast is. I sound like I'm. I sound like I'm blowing my own horn here, but it's a pretty global event, this podcast. All right, let me see if I can reach out and find somebody that's willing to come on and talk about it. All right.
B
Yeah, it'd be great, like, just to learn a bit more about how the algorithm works. And I mean, you know, I'm on Facebook and there's groups and people share things, but it is such good information that you put out there around how the different technology works and how you can optimize it and think about things that would be. It would be brilliant for this one as well.
A
Looks like it's a company out of Switzerland.
B
Like, I know there's huge uptake of it in Europe in the uk and it's pretty popular here in Australia, but I think that's right. I think it's somewhere in Europe.
A
Okay, well, I'm on their media page. I'll find an email address and reach out to somebody. Let's see. Let's see how far this. This thing works. Fine. Like, take it out for a ride and see what I got. Well, first of all, listen, you're very thoughtful. I really appreciate the conversation. I cannot tell you enough. Like, what did you do, go to bed at like, 9 o' clock and then get up at like 3 or something? What'd you do?
B
Yeah, I did. I think I went to bed at like 9:30 or 10. And then, yeah, I was up at 3.
A
I can't thank you enough for doing that.
B
No, thank you. I'm. I'm so pleased that I got the chance to speak to you, seriously.
A
Oh, you didn't gush about me at all. I couldn't tell with your accent. So you're.
B
Well, no, I'm. I'm a big fan. I've been listening since probably maybe a couple months after Ava was diagnosed. I put out a question on. There was a. It doesn't exist anymore, but there was a Facebook page of like, mum's little lawyers. And I thought, these women, they're educated. They'll know, you know, can anyone recommend a good podcast? And yours came up and. And I've. I've just been listening since then, and I've probably emailed you a couple times in. In the last Couple years as well, saying thank you. So if you want to find something where I'm gushing, there'll be somewhere in your inbox. But it's been hugely helpful to us and really like supplemented what we've learned with our educators here who I think are good. Like, I think compared to what I hear of being people being told in the US sometimes about how things work. You know, we left the hospital knowing we had to pre bolus. Like it was never a question, even a little two year old, right. We were pre bolusing that kind of thing, but really learning about how insulin works, how food work, how food hits, how it all interacts with like how to work out what my algorithm is doing. Like, I got that from, from your podcast.
A
Oh, that's lovely. I, I can't tell you how warm that makes me feel to just know that it's been helpful for you. I'm actually, when I get off with you, like I've been talking about on the podcast, but I've been going back and forth about telling people where they can find a calculator on my website that literally just takes your weight and breaks down what you're starting settings might be and then another calculator there that could take those settings and you know, with a little bit of carb information, protein, fat, give you a reasonable pathway on how to bolus. And it's all there. And I just, I keep going back and forth about whether I want to, you know, how do I present it, put it out. Like I, you know, I've written disclaimers around that. I'm not worried about that. It's, I mean, they're similar calculators you can find anywhere online, but it still gives me pause. And then I saw a woman today online asking like, she's like desperately, like, I've got to reset my kids settings and I don't know what to do. And I thought I'm gonna, gonna let her see that thing and see if it helps her. So at this point, I don't even know how I see myself exactly, but I just feel like I'm drawing the conversations in and you guys are the ones helping everybody. I'm just sort of the, I don't know, I've just got the, the bullhorn at this point, you know, so it's
B
pretty cool, the experience. Yeah. Of talking to all these people too, you know, to bring it into the other conversations you have. It's, it's been really useful, I think. And I think a lot of people get a lot of value out of it. And hopefully you keep making these for a long time, because I know this conversation you and I have had is one that you had very early on in your podcast. Like, I was listening from the beginning. And, you know, people who are going through what we're going through now are thinking about these issues now. And hopefully, I mean, I'm not sure there's necessarily anything useful in this, but, you know, it's. Everyone's kind of cycling through these same issues just at different points in their lives with their kids, with their teenagers, with, you know, as adults. And it continues to move. And it's useful to hear these fresh conversations about how people are thinking about it all the time.
A
Yeah, a million percent don't. Don't think twice about that because a couple of different things. So even if I've had this conversation two years ago, I've also had 600 since then. And I might interact with you differently, see a different side of it. You might say something differently, bring up a different perspective. And most of the people that heard the one two years ago aren't going to hear it. Yeah, those people are either gone and there's new people here and they're, they're never going to hear it. Like, that's the, you know, it's not a, you know, the podcast isn't a brain download. Right. So, like, you have to be an active listener when it. Things pop up. Except for the. Some of the stuff like pro tips and bold beginnings and stuff like that like that people go find, but no one's going to find even a conversation from like, you know what? Here's how I'll end you brought something up earlier. The one thing I didn't think to bring up today that I really appreciate and I agree with. You said everybody calls the kids resilient, but you don't like that. I have the same feeling. And I think of it too when people say, oh, you're so brave. Like, I don't think anybody wants to be brave. I think bravery is a thing you're thrust into when you do or you die. So you act brave. But that's not a decision, you know, that in these scenarios people make not wantingly most of the time. And so telling people, oh my God, kids are so resilient. I think it's a weird message. To me, it falls on the same lines of, you know, God gave your kid diabetes because they knew you could handle like, oh, awesome, thanks. It got. I hope that's not true. But at the same time, I understand the value in telling people, kids are brave, kids are resilient, people are resilient. I think you're right. But I think it ignores the idea that you're being put through something that you would never in a million years choose to do. And if you had any way out of it, you certainly would get out of it. I don't know if it just rings hollow when people say it sometimes, or if it's just the thing that maybe you say to make yourself feel better about what you're witnessing another person go through. But. Point being is, we did a series about resilience, me and Erica, and how it's maybe not what you think it is. And, you know, the people who heard it when it came out, loved it, and now it's still there. And, you know, maybe 50 or 100 people a day download it, but it's not. It's not seen on in any great numbers. And it makes me feel like when I realize that I think that about the whole podcast, like, it's impossible for me to just come out every day into the world and go, oh, my God, here's all the stuff you should be listening to. Like, I can't do that. Yeah, the only answer is fresh conversations. It's the only answer. It's what makes the whole thing going. So when you see someone online, go, don't ask that question. It's been asked already. I'm like, whoa. You do not fundamentally understand what makes this group valuable or the podcast. You want to continue to say this stuff, it's never going to be out of style. So anyway, I appreciate that you like it. Thank you.
B
Thank you.
A
It's my pleasure.
B
Thank you.
A
No, please. You are so measured in this conversation. Even if you gushed, I wouldn't even know. I can't wait to hear. Stop. And I think you're gonna, like, curse for 10 minutes and tell me, like, some crazy story. But thank you very much for doing this. I really do appreciate it.
B
Thanks, God.
A
Yep. I'd like to remind you again about the mini Med 780G automated insulin delivery system, which, of course anticipates, adjusts and corrects every 5 minutes, 24 7. It works around the clock so you can focus on what matters. The Juicebox community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, Visit my link medtronicdiabetes.com Juice Box. I'd like to thank the blood glucose meter that my daughter carries the contour next gen blood glucose meter. Learn more and get started today@contornext.com juicebox and don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the Contour next gen in cash. There are links in the show notes of the audio app you're listening in right now and links@juicebox podcast.com to contour and all of the sponsors. A huge thank you to Cozy Earth, a longtime sponsor. Cozyearth.com use the offer code Juicebox at checkout. You will save 20% off of your entire order when you use that code. Don't let me down kids. Head over there now. Get yourself some joggers, some towels, some sheets. Save yourself some money. Support the podcast. Make your life beautiful and comfortable all at the same time. Cozyearth.com use the offer code juicebox at checkout. If you're looking for community around type 1 diabetes, check out the Juice Box Podcast Private Facebook Group juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice Box podcast type 1 diabetes on Facebook. How would you like to share a type 1 diabetes getaway like no other? Join me on Juice Cruise 2026. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type 1 diabetes. It's not just a vacation, it's a chance to relax, connect and feel understood in a way that is hard to find elsewhere. We're going to sail out of Miami and the cruise includes stops in Cococay, San Juan, St. Kitts and Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility and exceptional amenities. You're going to enjoy a welcoming environment surrounded by others who get life with type 1 diabetes. I'm going to host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining and modern amenities all throughout the Celebrity Beyond. Your kids can be supervised and there's teen programs so everyone gets time to recharge, not just the kids going on vacation. But maybe you get to kick back a little bit too. There's going to be zero judgment, real connections and a whole lot of sun and fun on Juice Cruise 2026. Please come with me. You're going to have a terrific time. You can learn more or set up your deposit@juiceboxpodcast.com juicecruise get a hold of Suzanne at Cruiseplanners. She will take care of everything. Links in the show Notes links@juiceboxpodcast.com have a podcast? Want it to sound fantastic? Wrongwayrecording.com.
Episode #1790 – Gold Coast
Host: Scott Benner
Guest: Agatha, mother to Ava (Type 1), Gold Coast, Australia
Aired: March 5, 2026
This episode features a heartfelt and candid conversation between host Scott Benner and Agatha, an Australian mother living on the Gold Coast whose five-year-old daughter, Ava, was diagnosed with Type 1 diabetes (T1D) at age two. The discussion dives deep into the practical, emotional, and social challenges Agatha has navigated in the years since diagnosis—from identifying early symptoms to mastering diabetes management technology, advocating at school, balancing family needs, and wrestling with the realities of parenting a young child with T1D. The episode is especially valuable for parents and caregivers seeking not just tips, but also solidarity and honest reflection.
This episode offers an in-depth, realistic portrayal of the family and systemic complexities involved in raising a young child with T1D. Through honest storytelling and wit, Agatha and Scott show that effective care is about both technical knowledge and the art of advocating for your child—often in the face of inertia, misunderstanding, or well-meaning indifference. It’s a must-listen for any parent, caregiver, or educator working with young children with T1D.
For support, head to Juicebox Podcast Private Facebook Group and explore more resources at JuiceboxPodcast.com.