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Episode 23: Parenting Through Diagnosis: Tiara on Raising Alaska with Strength and Love
109 Plays20 days ago
In this deeply honest and powerful episode, Jacqui speaks with Tiara, a mother navigating the early days of her daughter Alaska’s recent Type 1 diabetes diagnosis. At just 11 years old, Alaska's diagnosis came after months of confusing symptoms, misdiagnoses, and even a moment of collapse — all just days before starting high school.
Tiara shares how she trusted her gut despite dismissals from medical professionals, and how the diagnosis reshaped every part of their family’s world overnight. From managing Alaska’s medical anxiety and sensory sensitivities to advocating for her at school and learning a whole new medical language, Tiara’s story is one of fierce love, resilience, and the invisible weight parents carry.
This episode is for every parent who's ever felt overwhelmed, every child trying to be brave, and every family finding their way through a new diagnosis.
💬 What We Cover:
- The long path to diagnosis and how fainting during a board game led to hospital
- Alaska’s medical anxiety and why a pump made all the difference
- Navigating two new high schools in two weeks after diagnosis
- The emotional toll on parents — and how Tiara is coping
- Dyscalculia, tech, and double-checking insulin math
- Finding a diabetes educator who changed everything
- Tiara’s advice for other families just starting out on this journey
- Why the Type 1 community matter so much
📲 Follow Alaska and Tiara:
Instagram: @alaska_and_mila
Alaska is proudly rocking her pump and sensor and sharing her story with the world.
Further Resources:
Type 1 Foundation Website
Follow us on Instagram
Join the Facebook Group
If you'd like to share your story with our podcast listeners, please email: podcast@type1foundation.com.au
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Transcript
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
00:00:14
Speaker
Reliance on any information provided by this podcast is solely at your own risk.
Welcome and Introduction
00:00:23
Speaker
Welcome to the Type 1 Club. Welcome 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers, and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion, and support, no one should ever feel alone in managing type 1 diabetes.
00:00:54
Speaker
Welcome to the Type 1 Club.
00:00:59
Speaker
Hey everybody and welcome to the Type 1 Club. I'm your host, Jackie Kidman. I am a mum to Harvey who is, well he's just about to have his 10th birthday actually in a couple of weeks and he was diagnosed with Type 1 diabetes in June 2022.
00:01:16
Speaker
I'm excited to have a guest today. We put a little call out to parents on the Type 1 Foundation, I think it was Instagram or something like
Listener Story: Tiara's Experience
00:01:24
Speaker
that. And we said, if anyone has a story that would like to share, i would like to come onto the podcast, then would you reach out?
00:01:31
Speaker
And we have Tiara that has reached out to us and she is wanting to share her story of her daughter's diagnosis. This is a very, very current diagnosis story.
00:01:44
Speaker
So at time of recording, we're probably looking at around three months. So If you can see Tiara, she actually looks amazing. I'm like feeling I should have put more effort into myself.
00:01:56
Speaker
But I know that those early days were quite difficult um for me. So i'm I'm impressed about that as it is. But um Tiara, I would love to welcome you to the podcast and thank you so much for your time.
00:02:09
Speaker
Thank you for having me. um Before we begin, I did want to extend a very sincere thank you to the Type 1 Foundation and also the Type 1 Podcast. um As we have been navigating you know these very early days of diagnosis, you know we received the new diagnosis backpack with all the thoughtful goodies in it.
00:02:27
Speaker
And we've learned a lot um in the podcast and it's really made the world of difference and helped us not feel alone on this journey. So just wanted to start by saying a big thank you to you all. And it's a real pleasure to be here.
00:02:37
Speaker
um That is so good to hear because really that's just that the underlying like kind of reason of having a podcast. And um obviously the the foundation is, you know, amazing and everything they do. But I guess part of my reasoning for starting the podcast was just another platform for people to share to learn and to to feel like they're kind of not alone and heard. So I love getting that feedback. i don't i I always say to people, please, like, you know, tell me your feedback and all that sort of stuff, and I don't i don't feel like I get a lot.
00:03:08
Speaker
So I'm really, really grateful that that you are enjoying listening to the podcast and getting a lot out of it. that was That's the goal, so we'll keep going.
Diagnosis Journey
00:03:19
Speaker
So, Tiara, can you start by telling us, well, you ought to go back to when your daughter, Alaska, was was diagnosed with type 1?
00:03:30
Speaker
Sure. So i have two daughters and we're talking about my eldest daughter, Alaska. So she was 11 when she was diagnosed. She was diagnosed on the 19th of January this year, so 2025. So We are very early in our journey.
00:03:44
Speaker
So I might talk a little bit about, you know, what led to that diagnosis and some of the symptoms we saw. as I said, she was 11, soon turning 12. And so we did see some weight loss. But again, like a lot of the other stories I've heard on this podcast, we kind of associated that to a bit of a growth spurt. We didn't really think much of it.
00:04:00
Speaker
she We had the summer holidays over the November, December period. And so she was drinking more, then going to the toilet more frequently. And again, i kind of put that down to You know, she's drinking more water. She's staying up later. You know, there's nothing really alarming going on here. and And realistically, it's only in hindsight that I'm looking at those things now going, okay, yeah, the symptoms were there.
00:04:20
Speaker
Some of the things that did raise alarm bells for me, though, ah were her lethargy, so sleeping a lot more. um She got a lot of headaches, and often those headaches would result in bouts of vomiting, and she was quite unwell. So we did take her to the doctor on four separate occasions, mostly about the headaches, just saying, look,
00:04:39
Speaker
you know, is there something going on? What can we do? Is there a preventative? It was almost migraines, right? So it's like, is there something we could be doing? Because she was getting quite a lot of time off school. So we were kind of going down the avenue of trying to fix these headaches and migraines.
00:04:53
Speaker
They did an MRI um and and checked and and saw that there was nothing wrong there. ah um And they kind of just put it down to, you know, she needs more sleep. She needs to drink more water. She's probably just stressed because she's starting high school soon.
00:05:06
Speaker
And so it was kind of dismissed as we can't find a reason for this. So it's probably just related to anxiety and stress. We went on a cruise then in um mid-December and it was a six-day cruise. And she would frequently ask to nap on this cruise. So it's a very cool cruise. You know, there's lots of activities and she just didn't want to borrow it. She just kept asking to go back to the room and have a nap.
00:05:26
Speaker
In hindsight, she had a soft drink drinks package, which means she was having a lot of soft drink and and we could see she'd get quite unwell afterwards and kind of get headaches and and talk about tummy pain.
00:05:37
Speaker
She also described palpitations, which like a heart racing, but our daughter is actually also diagnosed with medical anxiety. So she... She does tend to um have kind of a persistent worry about being ill and tend to slightly, i guess, worry or exaggerate. So a lot of these things, we also kind of like, it's okay, Alaska, like you're fine.
00:05:58
Speaker
And it wasn't until we got home that I was like, look, just, you know, mother's intuition. And I've heard you guys talk about this and in earlier episodes. And it really is that it was just something's not right here. And so it was actually four days before her diagnosis. I took her to another GP and they were like, okay, let's just do like a full blood count.
00:06:16
Speaker
see what it comes back with. So that was on like a Thursday um and we hadn't got to the pathology yet. And it was a Saturday morning when this journey started. So we were just sitting down playing Monopoly as a family.
00:06:29
Speaker
And she I remember getting a little cross with her in the game because she just wasn't present. Like it'd be her turn and she wouldn't notice or She wouldn't pick up both dice when she was rolling the dice, just little things that kind of looked like a disinterested preteen. And I was like, come on, Alaska, like play the game with the family. And then she suddenly was like, mum, really just don't feel well.
00:06:48
Speaker
I think I'm going to be sick. And she stood up to go to the bathroom. And as she stood up to go to the bathroom, she faints. So obviously an 11-year-old fainting is terrifying. um ah managed to catch her.
00:07:00
Speaker
um She kind of came to and we decided to take her to the hospital at that point. Between... our house in the hospital. It's about a 20, 25 minute drive. And on that drive, she kind of appeared to fully recover um as kids do, you know, when you quickly rush them off to the GP and suddenly they're all bubbly again.
00:07:19
Speaker
um That's kind of what happened. And so when we got to the emergency department, they were quite dismissive. um They asked if she was my only child, thinking I might've been a bit of an overprotective parent of one.
00:07:32
Speaker
And they kind of just looked at her and was like, she looks pretty well. You know, we'll keep her for some obs for your sake, basically. um And we'll just see how we go. And so weren't too worried at that point.
00:07:46
Speaker
they She hadn't eaten that day yet. And it was quite hot. It was December in, I'm sorry, January in Queensland. um And so they were like, look, she hasn't eaten this morning. She's probably just needed to eat and it's warm. It was only due to one of the nurses in ED who went, oh, let's just do a finger prick. Let's just Check that.
00:08:04
Speaker
And the first finger prick was wasn't too high. It was 13. And so they put that down to her body's response to fainting. They weren't really worried about it. The next finger prick they did was 18.
00:08:14
Speaker
eighteen And they were like, oh, maybe, maybe there's something going on there. But they still hadn't said the word diabetes at this point. So i didn't know what it meant. I was just like, oh, okay. And then they said, look, you might want to pack a bag. She's probably going to be here for OBs.
00:08:30
Speaker
um So my partner stayed at the hospital and I went to pack a bag. And between my drive from the hospital to home, I get a call saying they've done a finger prick again. Her levels are 25. They're administering insulin.
00:08:42
Speaker
So I still didn't know what this meant. um So um pack the bag, come back. And then there's a lot of people in this room. There's a pediatrician, a few other people. And diabetes still wasn't mentioned. They were actually thinking she had a tumour on her pituitary gland.
00:08:59
Speaker
And the reason they thought that in hindsight, now I know, it was because they were saying she was presenting too well for someone with diabetes. She didn't look unwell. She was quite chipper.
00:09:10
Speaker
um So they just kind of didn't think that that was a possibility at the time.
Managing Diabetes Post-Diagnosis
00:09:15
Speaker
So they were asking us lots of questions about that were directed more towards the diagnosis of a tumour. And it wasn't until we were admitted to our ward that I walked in to see all these resources about type 1 diabetes. And i was like, hang on.
00:09:28
Speaker
Like, what what is, like, I didn't know much about diabetes and it hadn't actually been really vocalised at that point. it It was such a focus on this potential of a tumour. So, yes, we didn't really fully have a good understanding of what we were in for at that point.
00:09:45
Speaker
And it it wasn't until they ruled that out, which took about a day and a half or so, that they were like, okay, yeah, she's got type 1 diabetes. um And from there, it's been quite a blur. But, yes, that is our diagnosis story in a nutshell.
00:09:59
Speaker
Wow. I got, I don't know if anyone else listening, but I actually got emotional, like with you telling that because I can put myself back into that scenario where you're, you know, like here you're in the hospital and you're sort of, they're doing these fingerprints and you're sort of like, what does this mean? Like that confusion and, you know, you're sort of getting little bits of information but you and you want the answer, but you also don't want them to tell you things that aren't potentially the right thing.
00:10:24
Speaker
And then for them to say about the tumour, oh, God. It's almost like, oh, well, thank God she doesn't have the tumour. But then it's also like, oh, i okay, but, she you know, like it's not, there is something, you know, like and and it's like, I don't know, it's like ah it's sort of like a bittersweet kind of, well, it's great she doesn't have the tumour, but she does have type 1 diabetes and that's, yeah, wow, that is that is so full on.
00:10:49
Speaker
Like how was she in that, like, moment? Was she sort of emotional, like with her anxiety and with things like that? Like what what was she like?
00:11:00
Speaker
Yeah. so she, when I took her to the hospital, she was kind of telling me I was overreacting, um but she was also trying to avoid any medical intervention because she does have quite significant medical anxiety. So the idea of even being in a hospital already had her, you know, quite heightened anyway.
00:11:17
Speaker
and the fact they did have to deliver her first insulin when I wasn't there. Cause I was still traveling back without overnight bags. So that was hard too, but she, like me, we were just confused. Like there wasn't much communication for the first couple days as to what this was, or even when they said, Oh yeah, she's got type one diabetes. We didn't know what that meant. Like I just like very naively thought it was, Oh, they have, need to have needles. Maybe it's a needle a day. Like I didn't understand the like the gravity of that.
00:11:44
Speaker
Um, And so it wasn't until probably day two or three where, you know, all the education pieces start with the dietician and the endocrinologist. and And there were very long, overwhelming days that it started to really set in for both of us. And I remember day three was particularly hard. Like um she would just, that you know, the people talking to us and she would just be sitting there crying and I would then sit there and cry.
00:12:08
Speaker
And it was just, you know, this insurmountable, amount of information in such a small time. That hospital did welcome me back to give feedback, which I did do, which which was wonderful. um They did, you know, they were amazing, but there were certain things that definitely could have been better. um and And a big part of that was just the overwhelm of, you know, trying to understand what this means and what this looks like.
00:12:31
Speaker
Yeah, because you're, and we've talked about this before as well, because you're basically going through this trauma process of, you know, having to be in hospital, having to get this diagnosis, but then it's like, okay, now you need to learn all this new information. And this is, this is, this is going to be your new life.
00:12:48
Speaker
And this, you know, if you get it wrong, it's potentially life threatening. And if you, you know, like, you know, like, it's like, okay, right. How do i you know, and you've heard me before, like, you know, I've done, you know, saying to myself, just pull your shit together. Like,
00:13:02
Speaker
you know, but it's so like when it's your child, it's just so emotional and you're trying to hold it together for them. But you're also like, I can't believe this is going to be, this is where we're at, you know, and this is, this is our new life.
00:13:16
Speaker
Yeah. And having that, um I guess that expectation that, as you said, like as mothers or as parents that we put on ourselves to show up and do our best and you know, depending on the day, you'd have a nurse come in going, okay, what's her carbs for breakfast? Have you delivered her insulin? And I'm like, I haven't even learned about carbs yet.
00:13:33
Speaker
Like, what are you talking about? um no Yes. So trying to, yeah, it was a tough ride, that's for sure. Yeah, yeah. So you're in hospital for a what, four five days?
00:13:46
Speaker
About five or six days, yeah, um before we were released. yes was she she didn't She wasn't in ICU, was she? No, she wasn't in ICU. She didn't have to go into ICU. No, okay thankfully. But she was released a week before she was due to start high school.
00:13:58
Speaker
So the poor little mite. So, yeah, she it was a completely different school, so her primary school didn't extend to high school, so it was a new school. um And actually, when I was in hospital, the nurse said, oh, you better ring her school and let them know. And that just wasn't on my radar at the time.
00:14:14
Speaker
And so it was like, oh, yeah, I better do that. And when I called, like they have borders at that school. um And when I called and said, look, this is what's happening. I'll send you through her plan, um her diabetes management plan. And they they were kind of like very cavalier about it. They were like, okay.
00:14:27
Speaker
And so I was like, oh, they must know what they're doing. So I didn't really think much of it. um Like, obviously, I was stressed, but I was still in hospital and very much focused on, you know, learning and caring for her at that point.
00:14:39
Speaker
So when we did start high school, unfortunately, that was really hard. The school didn't have what I now know is as level one and level two training, at least in Queensland. i't I don't know about other states um for diabetes.
00:14:51
Speaker
And no one had been trained um in diabetes care. So A day before she was due to start school, I actually called and said, look, I haven't really heard anything since setting the plan. Like, should I come in?
00:15:01
Speaker
And at this point, she had a pump as well. So I can talk a bit about that in a second. But and so we came in and they were like, oh. And I said, you know, before I start talking to you, like, what what knowledge do you have of diabetes? and they're like, oh, we Googled it.
00:15:12
Speaker
Like, it doesn't seem that bad. And i was like, okay. I guess long story short, only lasted about two weeks at that school because there was some mismanagement of her diabetes that happened um and it was just a very stressful time. So unfortunately for Alaska, my daughter, you know, she had how her ah she had just been diagnosed with type 1 diabetes.
00:15:36
Speaker
She had just started a new high school and then subsequently had to start a second new high school. So you had to, within her first two weeks, you were already searching. You already had this feeling that like this is not not working.
00:15:48
Speaker
And then when you were searching for the new school, were you asking those questions? You you know, my child's type 1 diabetic. Do you have any knowledge other than Google? Like, is that is that what you're asking, these schools?
00:16:01
Speaker
Yeah, yeah. So you're exactly right. So my first question was, do you have level 1 or level 2 diabetes training? Do you have other students with type 1 diabetes? Um, and it, you know, it was like a breath of fresh air when I did get the school she's currently at and they were like, yeah, is she on a pump or, you know, uh, pens is issue on this issue on that. And it was just like, oh, he's speaking my language.
00:16:21
Speaker
Um, and it was such a relief. Yeah. Wow. That that's crazy. And yes, it is like when people start asking those questions, you're like, oh, okay. So what do you, you like, you actually do know something like, you know, particularly when they talk about pens and pumps and you know, all that sort of stuff.
00:16:35
Speaker
And then so you transition out of that, the school pretty quickly into the new school. Yeah, under two weeks. Yeah. Oh, my goodness. Wow. You're already learning another language yourself, like but been having to teach the school about it. Like, you know, it's crazy.
00:16:52
Speaker
So how did how did your daughter cope with with that? Not well um because she she does have you know diagnosed medical anxiety prior to this diagnosis. She also has dyscalculia, which is ah learning difficulty that makes it hard for someone to understand numbers and math. So it means they struggle with i basic math. They can mix up their numbers. So instead of writing 62, they might write 26, which means for a pump, when you're entering carbs, we have to be really careful to make sure she does she's not inversing her numbers.
School and Anxiety Challenges
00:17:24
Speaker
And
00:17:25
Speaker
and so It was hard because the first school that we went to, they were kind of putting a lot of the responsibility on her to manage her diabetes. And we were at week three of being newly diagnosed. We had only had the pump for, I think, three or four days at that point.
00:17:39
Speaker
So it was all very new for us. And there was a lot of responsibility put on her too to manage herself. And so there was a lot of fears about going to the second school. of how They're going to make me do that again. you know, I'm really worried they're going to get it wrong. I'm worried I'm going to get it wrong.
00:17:53
Speaker
um And so, yeah, it was it was very difficult to get her to go to a second school. And it was hard for us to trust.
00:18:03
Speaker
Don't ignore the four. The four early warning signs of type 1 diabetes. Excessive thirst, frequent urination, unexplained weight loss and extreme fatigue.
00:18:13
Speaker
If you or someone you know is experiencing these symptoms, don't wait. Get checked by a healthcare professional. Early detection and treatment are key to managing type 1 diabetes effectively.
00:18:27
Speaker
Yeah, absolutely. It's that trust. I was like, I don't know whether you'd be sitting out there. at the front for the day, just ah went on you when you know it's like lunchtimes and she's going to have to administer insulin and stuff, whether you'd just be like, I'll just be here just in case.
00:18:39
Speaker
Because, yeah, it's hard to put that trust into like somebody to support your daughter. So I've got a couple of things that are popping in my like my mind is just like, oh, wow.
00:18:50
Speaker
And it just it just goes to show the more that you share, the more you talk about that people just go, wow, you know, like there is so much that goes into this that you don't even realise. And with what you said about your daughter um and the and the counting, like, and the impact that that can have if she does get that wrong, you know, if it is meant to be 26 and she puts 62, you know, so how, you know, some of the strategies that you're going to have to put into place around that, have you managed to work out a couple of things around that or to safeguard it or do you, and what do you, what what do you actually do about that?
00:19:23
Speaker
Yeah, so we're on the Yipso pump, which has been amazing. So there is an ability to kind of set a limit on like the max amount of insulin it can deliver. um um So that's one kind of safeguard inbuilt. Of course, that's not foolproof um because I think it's it something like 10 units. So it's still quite high.
00:19:41
Speaker
it just really means we have to be really present. We've got to double check her numbers. We know her carb ratio. So sometimes she'll go, you know, I'm having this and it's 0.8 units. We'll go,
00:19:52
Speaker
do the math, do the math. Yep, that's right. From the other side of the room. And the school just double checks or she just asks a friend as well because she's in high school now. She'll just go, hey, it's meant to be 13. Can you just check I've written 13?
00:20:05
Speaker
And she knows, you know, the limitations. She knows the risks. And I guess... Her medical anxiety is a strength in this situation because she's never going to wing it. She's um overly cautious rather than under. So, yeah. i Okay. Yeah, I guess look i I would think it would be the other way around that she'd be like, she's just in denial about it. But she's obviously, yeah, that double double checking. and And that's so good that she can call on a peer to do that double checking. So then it's not necessarily putting it always on a teacher or, you know, that sort of stuff, even though, you know, it is their duty of care to keep these kids sort of safe.
00:20:38
Speaker
Yeah. With her peers, it's more just if she buys like a drink from the tuck shop and it's just like a one-off bolus, she'll get her friends for her larger bolus quantities. um we yeah Because she has her phone on her because of the pump, we just text her her numbers in the morning.
00:20:51
Speaker
um And then whatever class she's in prior to break, she goes, hey, this is the numbers my mum has sent. Can you cross-check my phone to my pump? And so, It works really well so far. um We've had a couple little hiccups with like minor boluses where she's kind of forgotten to check, but thankfully it was quite like low impact, um like 16 instead of 19 or vice versa. So, but yeah, so far so good. Touch wood.
00:21:14
Speaker
Yeah. So you must've got on the pump pretty quickly. We did. so tell us about that sort of, and the decision for that and and how, you know, yeah, why? Yeah.
00:21:25
Speaker
So there's a few reasons why. So um her medical anxiety proved quite challenging with the needles in particular. It was really tricky to to allow for her to allow anyone um to to administer the needles, including administering it to herself. That was something she had to do prior to us being discharged. She had to demonstrate that she was capable of doing that.
00:21:43
Speaker
um And that was really tricky. It was one of the criteria. And because of her medical anxiety, she was just forever heightened about, you know, what's going to happen if I get this wrong, what's going if I go too low or too high.
00:21:56
Speaker
And I guess the pump gives you a little bit more control or visibility over that. And so that's one reason. um the other reason is is that she is also autistic. So she doesn't, there's certain sensory or textures and things that bother her, which i was actually quite concerned about the pump because it is something kind of additional hanging off you. And I wasn't really sure how that was going to go. And I kind of questioned her logic around that. I was like, are you sure?
00:22:18
Speaker
that a pump's going to be preferable for you and and we did have to go searching for a pump belt so something that carries the pump on you that worked for her but it was something that I guess I think for her the the peace of mind that that gave and and the the reduction and the number of needles made that worth it so um we're really fortunate enough to have a really great uh diabetes educator she was quite far away she's two and a half hours away so at the coast um And the day after we were discharged, she said, you know, come up, let's just do it. How did you find how did you find that diabetes educator?
00:22:49
Speaker
Through the hospital. Yeah. So. Oh, okay. Okay. And we did ah video calls ah while we were in hospital to try and get like the pump forms done and. um a bit of like education pieces. And then, yeah, she said, I will get it organized. I'll try and get it here before school. That was another reason too.
00:23:05
Speaker
So come up. So, you know, the last thing we wanted to do was drive, you know, five, six hour round trip to the Gold Coast after being discharged from hospital, but it's what you do. um And so we went there and had our very long education piece. And it's just, and I don't say that like negatively, like it was great. It's what we needed, but it's just another thing, you know, like you've just learned this language about diabetes and bolus and all these things.
00:23:28
Speaker
terminology that you're not familiar with and then there's pump language you know and I remember sitting there thinking like is this the right thing to do because I just felt so overwhelmed I felt so sad still I was still grieving um i hadn't found our groove yet and so I didn't feel confident in that decision yet like I was like I don't know I haven't had enough time and like this just all feels like it's too much and I think that's probably the takeaway of this is it still feels like too much you know three months in but I remember sitting there being like this because, you know, they have to have a cannula with a pump. And I was like, well, that's still a needle.
00:24:00
Speaker
Like, why? You know, I don't know if this is actually going to work. and And with the Yipso pump, you have like insulin reservoirs that you've got to like manually refill and stuff. And I was just, I remember just sitting there being like, I am so overwhelmed. I'm not going to retain any of this. i don't know if this is the right choice. Like, what are we doing here? And I was really questioning my decision making.
00:24:18
Speaker
But, you know, like you, I've heard you talk about, you know, giving Harvey choice and voice. and And I'm like, you know, this is what she wants. So if this is what she wants, we're going to give it a go. And I'm so grateful that I trusted her instincts because in that room, I wasn't convinced. I was pretty skeptical that this was the right choice for us. But since then, I can say the pump has been a game changer for us just with the stress levels of, you know, a cannula is only every two to three days, not you know, an injection multiple times a day. And it does, you know, the the pump has AI, so it tracks her levels and things like that. So we're able to keep it quite steady.
00:24:52
Speaker
And it just kind of alleviates some of that pressure and it minimizes her anxiety. So it's a bit of a win-win for us. But I remember being still, like I'm still overwhelmed, but in that room feeling like, oh gosh, I don't know.
00:25:04
Speaker
i'm I'm actually quite emotional hearing this. I'm not sure if you can see my face, but I'm trying to keep it together. I'm actually just thinking about because I've got a son that just started high school this year and let alone like having the choice of,
00:25:16
Speaker
school, like I remember thinking, have I done the right thing? You know, like where we're sending him, you know, like it wasn't where majority of his friends were going. And then, you know, kind of like he, but he doesn't have one type 1 diabetes, you know. So like I can imagine like just that it's your first child going to high school.
00:25:34
Speaker
It's your, you know, then you then you have to change high schools because it doesn't it doesn't work for her because the reason being because of the type 1 diabetes management. And then a new school but then having to have the pump, ah adjusting the you've just basically been hit by a semi-trailer and you are having to just get up every single day and and several times of the night and just keep going, you know, like, and it's a lot, like,
00:26:07
Speaker
How are you? We talk a lot about how Alaska is, but like, what are you doing for you Because you are, you know, we we take on so much, us mums, and I know that there are dads.
00:26:19
Speaker
I'm not going to exclude the dads, but I'm talking on because I'm mainly, you know, I'm a mum. And, you know, we as parents, we take on so much, but yet we also put so much onto these children to have to just put on a smile and just get on with it.
00:26:35
Speaker
How are you going? I'm okay. I'm okay. getting The metaphor of getting slammed by a semi-truck is great. I might steal that one more often. Look, I think I draw, and and this is going to sound, I guess, quite stereotypical cliche, but I do draw strength from her. Like, she's the one having to live with this. She's the one having to experience the feeling of a low. Like, I get the alarm and have to get up and have the worry, but she has the symptoms that comes along with that, you know, and she still wakes up and turns up for school every day. And And I think if she can do that and she's ah she's now 12, I can do this. And I think that's, you know, my motivation. And there's also gratitude there. Like it could have been worse. And I know type 1 diabetes is hard and I'm not minimizing that. It is bloody hard, it could have. I've still got her and she's amazing.
00:27:22
Speaker
um I also have a really good, like, great partner who's fantastic at math. Ironically, i thought i would be I thought I wanted to be a nurse and I chose not to because of math and yet here we are. But to he's great too.
00:27:35
Speaker
The one thing that does make it tricky, I guess, is self-care and I say this a fair amount is that it's almost like having a newborn again because you can't, like, saying, oh, can I go for sleep
Support and Lifestyle Adaptation
00:27:44
Speaker
over? It's like, sure, anymore. It's, oh, um...
00:27:47
Speaker
okay but you know we've got to figure out what this looks like and you have to then do the education piece again or you can't just leave the house you've got to make sure you've got all the stuff that you need in case you know something goes wrong um and so i do you know draw that parallel of it's like having a ah newborn again um with the sleep deprivation and the and the worry that you have you always have worry for your children but particularly when they're tiny tots and I feel like that elevated again. And so it's not as easy to go, you know what, a hand up, I need a break because you you probably could let go a little bit, but you don't want to. You're terrified, right? Like this is not something that is easy to relinquish control over.
00:28:23
Speaker
So I think that makes it tricky to take care of yourself. But um yeah, I give credit to her and and my amazing partner and um obviously friends and family. But i don't know if there's anything that makes this easier um other than community and having people around you that understand Yeah, yeah, yeah, absolutely. And, you know, like you're so, articulate this so well that I, like, to be honest, I couldn't articulate that for the first 12 months, you know, and I remember writing
00:28:54
Speaker
like I remember thinking i need to write down like Harvey's diagnosis story because that that felt really therapeutic for me and I remember sitting and just writing it and just crying and crying and crying and you know I couldn't I couldn't even like I would see people at the school pick up and they'd be like how are you and I would just be like I couldn't talk I just turn around and like go to my car and cry you know like and um And it took me a long time, you know, probably that first 12 months, I really struggled to, you know, feel like like I could move past this diagnosis.
00:29:29
Speaker
and um And yes, Harvey's amazing and, you know, all that sort of stuff, but it was still this adjustment and still this grieving of We talk a lot about that, that it's like this grieving of, you know, like, yeah, like those's those those sleepovers aren't that easy anymore.
00:29:43
Speaker
You know, like those just things aren't that easy anymore. You're like, oh, yeah, i remember when we used to just be able to be spontaneous and, you know, do that sort of stuff, which now we are anyway because we just have like a bum bag that's filled with, you know, with Skittles and snakes and that's what we grab when we, you know, go out the door. The car's got stuff in it that, you know, everywhere.
00:30:02
Speaker
Friends always say to me, oh, I've still got a packet of Skittles in my pockets. for Harvey, you know, like, you know, like at the footy club and, you know, that sort of stuff. So you start to build this, like you said, like this community around you that you just know that, yeah, look, if we did walk out the door and we did forget something, you know, we can can always turn around and we can, you know, make that decision if it's really needed.
00:30:24
Speaker
and Several times we've left and forgotten Harvey's phone and had to, we're actually in Port Douglas just recently and ah we got like this this community bus that would pick us up when we'd take us into because we were staying a bit far out of town.
00:30:38
Speaker
And one of the days he left his phone in the bus and we were like, oh, this is interesting. like um And luckily I could see where it was and I was managed to get it back. Like ah I tracked it basically and said I can see that it's in the bus and that bus is in that street like when I called them.
00:30:54
Speaker
But, you know, there are those things that you kind of go like, well, shit, what would I do if we didn't if we did if he does lose his phone? Because there's the potential as he gets older or, you know, that they just get a little bit more vague. I've definitely got that with that teenager.
00:31:06
Speaker
um you know and But, you know, you're kind of like, you know what, you can't constantly think of what ifs, what ifs, what ifs. You just put provisions in, don't you, to kind of go, well, if that happens, we we pivot.
00:31:19
Speaker
We left turn. Yeah. Yeah. Even the phone is something as a parent you've got to then figure out. Like, you know, you've got to have they've got to have their phone within a certain range of them at all times, six metres, I think.
00:31:31
Speaker
And it's like, jeez. So, you know, we've also had to cross that bridge of like, well, we're seeing an increase in her phone use and we don't want that, but we also can't take it off her. So there's lots of, I guess, unseen challenges with diabetes um as well. Like it's not just the diabetes, it's, you know, access to technology, it's potential for being ostracised at school because you're allowed your phone but no one else is.
00:31:51
Speaker
And so just when I think I've got a a bit of a handle, i'll never but I don't think I'll ever fully have a handle, but a bit of a handle, there's some other obstacle that's kind of thrown in there. ah Absolutely, absolutely. And then you're going to move into that, pube like the puberty stuff, then you know, the teenage attitude, you know, like so there's a whole other thing you know, kind of like the hormonal, like it's constantly evolving. And then because we're the same, like we're moving in with like the physical activity stuff, like because he's doing so much like sort of, you know, other sport that then it's kind of like adjusting. And then in three weeks time, he'll go onto a pump. So when then we move into that. Like it's constantly evolving.
00:32:28
Speaker
And, you know, the the good thing is that we can see that there are other people that are doing the same thing. And maybe it's ah eight each journey and each person's type 1 diabetes story is so individualised that I don't think that you can, I think we've moved away from kind of comparing. Well, I have anyway. I've moved away from going, well, they can compare.
00:32:50
Speaker
They can do that and why can't, why am I struggling? Like, and that's what I think initially I did find was, you know, with the early stages was like, you know, I'm actually struggling just to get through the day, you know, without like crying or just even just to have shower and get myself dressed after this. Like, what's wrong with me? But that was just my way of processing that grief and everybody's different, you know.
00:33:13
Speaker
um And, yes, I talk about heart giving Harvey choice and, you know, and all the great things, but it doesn't it also comes with, you know, a lot of resistance and, you know, and challenge sometimes and, you know, particularly late at night when he wants to sort of have a very philosophical conversation with you about why why me, you know. Why me? Yeah, i was just about to say, it does ebb and flow and I think for the impacts on the person living with type 1 but also, you know, the carers as well, like,
00:33:42
Speaker
there's weeks where I'm like, this isn't so bad. Like, I've got this and it's fine. And I'm filled with gratitude and resilience. And then there's other weeks, you know, you would know when you've had a few nights of hypos or, you know, failures of insulin or administrating or whatever's happened.
00:33:55
Speaker
And it's just like, damn, I hate diabetes. you have yeah You have your times where, you know, it feels too heavy and then other times it's not. And I think, you know, Alaska has certainly, I've seen that pattern of, you know, the ups and downs of someday she's like, you know, I've got this and you know, she's just started rocking her sensor and her pump and not hiding it anymore, which is so beautiful to see.
00:34:16
Speaker
um And then, you know, she had a really bad day at school yesterday where she was having multiple highs and things. And, you know she's quite teary on the phone saying, why me? And I think with that, I think I've matched that our patterns complement each other when I'm feeling quite in control and I feel like I've got a handle on this and i'm feeling quite positive she's low and vice versa. I think that kind of carries us along. But I do think awareness, awareness which is why i love you guys is I think awareness is key like ah you know now my people around me are really supportive and wonderful but I will admit like when we came home people were like oh diabetes isn't that bad like isn't it just you know just don't feed us sweets
00:34:51
Speaker
so you know, at least there's something like that can fix
Raising Awareness through the Podcast
00:34:54
Speaker
it. And it's like, oh, it's not really fixable. um And so yeah it was, you know, I think Ange was saying like that loneliness attached to the the diagnosis is huge. And I think you guys are doing an amazing job at trying to remove that.
00:35:08
Speaker
So yeah, gratitude again. Oh, amazing. Well, yes, I mean, look, I think that there are so many great people within the type one. I've never known a community like it, to be honest with you.
00:35:21
Speaker
um You know, and and I know that you feel the same. You know, there's not many people that you can just say, hey, you want to jump on a call and have ah and record your story and you tell us all your, you know, the details and um share that with and people being like, yeah, sure, I'll give up, at you know, an hour of my time. Like it's a I don't know.
00:35:39
Speaker
I just find it. Yeah. I just find that's just, it's just so amazing. And I've gotten so much out of doing this myself. Like, you know, I've, I do say it's for the community, but I kind of like, you know, really it is also for me.
00:35:51
Speaker
So, um you know, I'm really grateful for that too. And but the type one just give me kind of creative license. So they don't, they don't care if I swear or if I, you know, kind of say stupid things or,
00:36:02
Speaker
ah mispronounce things, they're like, whatever, just go for it, Jackie. So I'm really grateful for Ant giving me a creative license on that. So i've I know that we could continue to talk for ages and we do and try and keep these sort of within a 30 minute timeframe, which we're already over.
00:36:18
Speaker
So just to summarize or just to do my last final question, can you if you've listened to a few episodes, do you know what my last question is going to be? What is her hypo treatment? Oh, my God.
00:36:30
Speaker
I love that. So, yes, her hypo treatment is these gluco chews. Her particular favorite is the raspberry flavor. I'm trying to convince her to try some of the others, but she's pretty set in her ways. Once she's got something she likes, that's it for her. So, yes.
00:36:47
Speaker
And look, I was happy with that because they're quite easy to carry around. actually tried one the other day. I was like, I haven't even eaten one myself and they kind of taste like sherbet lollipops. I'm a bit of a fan. Do they? Okay. Yeah, I actually haven't tried either.
00:36:59
Speaker
Harvey wasn't a fan initially and now he's gone back to them, but he just likes the lime ones, which I'm really surprised. I thought he would have liked the raspberry as well. And the orange doesn't doesn't like either of those. He just likes the lime. So yeah.
00:37:10
Speaker
Oh, very good. And it's a good choice. I mean, we we mix ours up, but. that's what we kind of tend to go to as well. So, oh, Tiara, thank you so much for um for your time and for your sharing your story with the Type 1 Club community. I've really valued it and and I'm sure that we will continue to connect with each other.
00:37:29
Speaker
Do you have an Instagram page where you share any of this or do you do you do anything like that? Are you up to that part? A lot of Type 1 mums do. so Yeah, um it's alaska__and__mila, but I'll send you the thing. It's my daughter's page, we're doing a lot of um Type 1 advocacy work on there now. As I said, she started to rock her gears. We had a bit of a photo shoot recently with a sensor and a pump, so she's really keen to share those. so um Amazing.
00:37:53
Speaker
Thank you so much. And thank you everybody again for coming back for another week of the Type One Club podcast. Please get in touch if you would also like to be on the podcast yourself and share your your child's or your story.
00:38:06
Speaker
And we look forward to bringing you another episode very, very soon.
00:38:12
Speaker
Thank you for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms so you never miss an episode.
00:38:26
Speaker
We also appreciate it if you could leave us rating and review. It really helps us to reach more listeners just like yourselves. For more updates, behind-the-scenes content and to join the conversation further, follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website, type1foundation.com.au.
00:38:47
Speaker
Thanks again for listening and we will see you next time on the Type 1 Club.