UNspecial LLC: Something no one tells you about motherhood with Dravet. ⁓ I mean, you never rest again. or you honestly, you and your partner will merge into one person because caring for your child is a 24 seven job. The thing about Dravet syndrome is it's a genetic mutation. So it's because she basically has a spelling error in one of her genes, it's in her DNA. So part of her brain being removed is not gonna fix it. At the moment, the like the myoclonic seizures she has which are like maybe 10 to 15 seconds she's having like 50 to 100 a day and the thing is everybody will say let me know if you need anything but only a few people will know that you will never ask. Hi welcome to the Unspecial podcast today I'm talking with Bianca Coughlin. Coughlin? Coughlin. Coughlin. And she's from Australia, as you probably figured that out. She is a mom, an advocate, and a fierce believer in showing up for herself while raising her daughter Skylar, who we'll talk about, who lives with Dravet syndrome. Bianca's story is raw, real, and full of lessons about strength, love, and resilience. And we're diving into the highs. the heartbreaks and the way she's learned to care for herself while caring for Skylar. So get ready for a conversation that's going to be honest, inspiring and unforgettable. Bianca, welcome. Thank you. Thanks for having me, Zach. It's sad to be here. Yeah. So before we get into it, I want to know, I want to hear your High Rocks experience. And for the listeners, High Rocks is big in the UK. It's, ⁓ well, how does he describe it? It's like strength meets cardio or like CrossFit makes meets functional fitness. It's a running race. It is a running race. Yeah. it the hardest part? In between a very short and sweet, and then you're running again. I think I would struggle. I mean, the gym I go to is very high rocks focused and all the movements. I enjoy, but the running I despise. So I would struggle. Yeah. You have to enjoy running because it's an AK of solid running and it's continuous running. There's no rest. So yeah, you are running and then you're in for your station and then you just pick your heart rate even more. And then you're running again. What was your average heart rate? Probably like over 180. Like my max would be 195. And yeah, I was probably over 180 the whole time. you're in zone five. my gosh. The whole time? Yeah, by station three, after those sled pushes, you're in zone five. I was actually pretty sick when I did it. So I couldn't even breathe through my nose. And my partner was really fit. She's so fast. So she's just gone for a stroll on these runs with me and just trying to keep me going as I'm just, yeah, really struggling. But it was good fun. Will you do it again? ⁓ I don't think I'm interested in doing it solo, but I would be interested in doing a partner again. The partner was fun, but I'd like to train more for it if I was going to do it. I just don't know if I have the time to train for a high rocks properly. I've got the time to run. just everything in between is gotta be good at everything. That's right. And it's eight movements ski. What is ski, sled, push, sled, pull, lunges, burpee, broad jumps, wall balls. ⁓ carry, roer, roer. And then in between each movements, a kilometer. Yeah, it is a kilometer, but it did feel like it was a bit shorter. I think every course is slightly different and they try to average it out. So it's the one. ⁓ but then I think the thing that gets you is. The running is you're running under stress. your legs are toast. After the sleds, you're pretty done. Sounds awesome. farmer's carry, because you come into the farmer's carry, it takes like a minute and then you're out running again. So you don't get any rest. There's no rest. At what heart rate is it bad for you? And for the listeners, Bianca owns ⁓ Strong Milder. Mildura? Yeah, we got strong colliders from Mildura. I've got background in strength and conditioning in the last 15 years. Okay. So at what point is your heart rate too high? Like how high can it go? Everyone has their own personal max heart rate. I think regardless, everybody's going to end up pretty close to their max heart rate in a high rocks because it's not a stroll. It's a race. It's a race. You're not cruising in a race. No, Well, all right, so let's get into it. I'm gonna rapid fire one, two, five questions. And you got 30 seconds to answer them. Because we like high rocks, everything's timed, right? All right, first one, your morning routine, chaos or calm? I prefer calm, but it's more chaos. What's the chaos? life. Tugging, just nappies, trying to get them fed, medication, yeah, everything. That's a big one. ⁓ One word to describe Skylar. Resilient. Resilient. One word to describe your husband. This is a bonus question. Calm. Calm, all right. And you have another kid, correct? Child? Yep, I have Brady. He's nearly two. Yeah, he'd be two years old by How old is Skylar? She's five. Okay, Skylar's first. ⁓ One word to describe your other child. Busy. Busy. So that's where the chaos comes from. Favorite way to recharge when life feels overwhelming? Run or sleep? There's kind of like two opposites. I know, it depends on what my body needs more of. I need to run to just have nobody talk to me or touch me or need me. And then sleep is a fight. I can't, it's the one thing I can't do when my kids are awake. So I'll choose sleep if I need it. Sleep. And of late, your sleep has been a challenge? My sleep? Yeah. It's been okay. Oh, it's hit and miss. Kids just, you know, it might be tough to get to bed or they wake up in the night. If Scarlet wakes up in the night, it's very hard to get her back to sleep. So, hit and miss. I lost it for a second. ⁓ something no one tells you about motherhood with Dravet. ⁓ I mean, you never rest again. or you honestly, you and your partner will merge into one person because caring for your child is a 24 seven job. We'll dive into that here shortly. Your personal mantra right now. One day at a time. that's good. One day at a time. All right. So Dravet syndrome. Can you break it down for us? I think it's misunderstood and also not understood. Like I don't think many people know too much about it. I think the thing with Drabe syndrome, so it was a French specialist who discovered it, that's hence the Drabe name. ⁓ It's a rare epilepsy. It's not super rare, but I think what I want people to know when they come to learn of Dravet syndrome is it's a genetic mutation. Because it's, I guess I'm tired of people sending me stuff of these miraculous brain surgeries where the epilepsy is in the brain and there is a chance for surgery to improve it. The thing about Dravet syndrome is it's a genetic mutation. So it's because she basically has a spelling error in one of her genes, it's in her DNA. ⁓ Part of her brain being removed is not going to fix it. Hmm. So did you know, let's go back to the early days. Did you know that she had that before birth or no? Sorry. Even if you want to try and get it tested, it's a pretty invasive procedure and it's really difficult to test. They'd never test it unless it, unless you were a gene carrier and you knew there was a risk. ⁓ even when she was born completely healthy. Ticked all the boxes even though she already had it. Hmm. So how was the, when did you find out? First seizure. Sorry. ⁓ man. How old was she? She was three months old. Usually brought on by their first illness, which she caught a cold at three months old. So that was her first seizure at three months old. From then on, she's rarely ever gone more than seven days without a seizure that just flipped a switch. And that was it. She's had seizures. quite volatile ever since. And from three months old, she got diagnosed at six months old. So it was a very fast process. Her neurologist was sort of really good once we got into it and it sort of got sped up the priority list once she kept presenting to hospital. And there were a few things that, I mean, when it comes to awareness, like you just said, it's probably more doctors and nurses hearing about it and the awareness and the triggers. So they can be the ones to take charge to say, is ringing a bell. We're going to do this genetic testing for this type of ⁓ range of epilepsy to see if it is one of these early on. ⁓ how was I can't, I'm just like trying to imagine a picture. I saw, I taught special ed for seven years. ⁓ handful of my students had seizures. but nothing like what you're describing. just the constant, I had one in particular. It was high school and he had to be watched at all times. And if he did seize, you know, we had our protocols and what we had to do to take care of it, but it was super stressful. Just the nonstop like monitoring and watching and everybody like, where, you know, what's he doing? Why is he doing this? How do you like... function with all of that stress. It's, I don't think people, I still don't think people understand that it is 24-7. Like it's, you're a supervisor to a degree because you want to give her some independence, but you still have to be watching her at all times to be incredibly vigilant. There have been times where I have taken my eyes off her for a couple of minutes and I've found her seizing face down on the floor. ⁓ Very rare because it's very rare that we're not watching her, but for instance, you're just going to get the laundry or something. And then you just beat yourself up so much that you weren't there. But yeah, I think that's just one thing that people just truly don't understand. A lot of my discussions with educators and teachers all start out with me telling them like, yes, you need to understand that somebody has to be tagged to Skylarp. You have to have eyes on her the whole time. And it's not until they fully see it and experience it and witness those seizures and how volatile they can be and the procedure that needs to be followed that they're like, okay, now we understand. ⁓ And then when you experienced one, kind of like wakes you up a little bit. How many seizures does she have multiple a day? At the moment, the myoclonic seizures, she has, which are like maybe 10 to 15 seconds, she's having like 50 to 100 a day. They are just a catch her and a ride it out and make sure she doesn't hurt herself. The other ones, her focals, her tonic clinics, those more aggressive ones. She requires the rescue medication, midazolam, all families will be familiar with that probably. They are ramping up. So, I mean, she probably averages like 12 or more a month. Wow. So you said you can't even go to the other room to get laundry without... So she's with you at all times? Pretty much. very much. She's, we still don't have a support worker as yet. So in her whole lifetime, it's being myself or Daniel that have been with her. So like say if we were ever to go to a wedding, one of us will stay home until she's asleep and then try and go. No one's ever put her to bed. We don't, unless she's asleep. So we just don't go anywhere. We just don't do anything. Will she have seizures while sleeping? Don't jinx me, Zach. Sorry. Bad question. Move it on. It is common to have nocturnal seizures where she's she's woken up and had them, but she hasn't had them in her sleep. She's only had them when she's woken up during sleep. Yeah, because the student I had, if he were to fall asleep. which he was always tired. So it was always like a chore to keep him awake to get through the school day. But his seizures would happen when he would fall asleep. And we would be like, you know, that it happened two times in class. And now those were two phone calls I wish I never had to make. Because then, you know, the mom immediately was like, why, why was he sleeping? And then it was like, It was hard. It's hard. ⁓ So what's her day look like? ⁓ She's not like she maybe sleeps until 6am at the moment, which is nice because once upon a time it was 5am. So given she sleeps all night, that's nice. Not all the time. Medicine is up first really, but she doesn't really eat much. But we've got to try and get it in with food. So that's always a struggle. But usually, honestly, Zach, by the time I get her out of bed. take her into the bathroom to get ready. I don't ever get out of the bathroom without her having seizures. my, honestly, my goal at the moment is to just get her up and out of the bathroom before she has her first seizure because I can't even walk her out that door without her basically going into one. Wow. So she's five. Is she, what grade is she? Is she in school? No. She just started school. Okay. This year. How's that going? Not great. Yeah, I can imagine. Yeah, that's It's okay. At the moment, the school isn't trained. So I still sit on site because they can't give her medication and the medication has to be given on set of the seizure. So it's challenging because wherever she is, a parent needs to be And then the other parent is with our like Brady, our other son. So now we have two parents out of action and not able to work either. ⁓ so that's like another challenge that, you know, everyday families don't have to face. Yeah, no, I don't think, ⁓ I think people can, ⁓ kind of put two and two together and see what, see what it's like, but I don't think most people realize. And then when you. Another big thing people don't realize is when you drop your kid at school, like you don't ever separate. Like she's still in your mind and it's hard to like, ⁓ she's at school. Like I can go on with my stuff, but obviously you can't do that. Even when they're like, and I won't be able to stay on site anymore, I'm honestly probably just going to sit in my car or just be down the road somewhere because yeah. It's, she's, when she has a seizure, if she stops before I get there, she's going to be pretty upset. ⁓ yeah. Yeah. I just want to be there when she comes out of it or wakes up. So she's, is she pretty active? She's very active. She's got a mind of her own and legs that work and she will just run wherever she wants to go. That makes things a little more interesting. Tell me about it. Recently, well maybe not recently, but I see that you guys are getting into painting. ⁓ my God. Yeah. The thing with Skylar is she gets obsessed with a particular thing and routines. So as soon as you do something a few times, it becomes part of her day. Like, for instance, like eggs. All of a sudden she's become obsessed with like the eggs, like climbing the fridge to get the carton out and cracking them. And she has to do it. And then we have to cook them a certain way. But now we're just cooking the eggs and wasting them. But it's just because it's fun. It's part of her day. yeah, so I've started this art thing and the worst thing I did was start with her letting her use her feet to get, you know, feel the paint, bit of sensory. And ⁓ my God, she just wants to always get her feet. in the paint now and that's the struggle. Like I wish I just used a paintbrush first. Yeah. ⁓ man. And then your two year old, how's their, ⁓ what's their dynamic? He's pretty patient, but he's also at the stage where he wants attention too, you know, but he's very gentle and empathetic that he knows what's going on. Like since he's been born, the paramedics have been coming to our house weekly. You know, he sees the ambulance, he's seeing his daughter, like his sister get carried out on a stretcher. To the point that now she has a seizure, he's aware of that. Like he goes over to the oxygen and gets the nasal prongs and he's like, Skylar. And like, you know, she's on the ground and we're giving her the meds and he's got the syringe and he's trying to put it in the meds and like draw it up. And he's like, puts his hand on her and he's like, Skylar, okay? He's not even two. He's just, yeah. He's gonna be tough He's the only one that she tolerates as well. I think they're just each other all the time. She just adores him and they're very sweet. They have a very sweet relationship. Yeah, so does Skylar have Friends or like is there community? I think this is something I battle with in my brain because like when I sent her to kindergarten it was short and sweet it was only Six months now. I think that's called preschool for you guys. It's the before prep Like she was in there with just a class of maybe 30 kids and there were, I guess, your normal kids in there. And, you know, a few little girls would sort of run up to her and they knew her name and they were excited to see her, which is really nice to see. And then, but I know that she's not going to thrive in a mainstream school because she requires that supervision. And, you know, she also has the autism and the cognitive intellectual disability. So we decided that there's only one other school, like there's a special school that she could probably go to where it might be safer for her. But the hard thing with that is they're all, I guess in a way, in their own world, she's in her own little world. So there's no one coming up to her that knows how to make a friend. She doesn't know how to make a friend. ⁓ So no, and that's, know what, that's just the one thing I've always wanted for her is just for her to have a friend. but she doesn't have that yet. Maybe it'll come. It'll come. There's be some time. then what, ⁓ she's on a handful of medications. What's like the trajectory or what's the future look like? for medication or for her? Yeah, both. Like, is there anything that can help alleviate some of her stuff or? The medications are band-aids and they're only band-aids to try and reduce the seizures, maybe control, but in her case, no. She's got a, she's at the very severe end of drave. And again, it's genetic, right? So realistically, the only treatment to help the root cause is gene therapy. And there are trials for that that are going on at the moment. But then you sort of have to come to terms with that age group that this is going to be available for whenever it does become available. Because, you know, by the time these gene therapies go through the trials and it deems safe enough, it's gonna be 10 years from now. Yeah, yeah, Man, I gotta breathe, I'm holding my breath. So how, your husband's name's Daniel? Yep. And you said... it really makes you one having a daughter with Dravet syndrome. How like, how do you guys make sense of it all? Like, how do you sit in the space of like, hope, but then like reality. I mean, I asked this because currently a lot of our listeners know my wife's been battling cancer for the last two years. And so sitting in that space even for me of like hoping for the what's to come, but then also like realizing like she has cancer and you know, it's like how do you wrestle through some of that. Yeah, that's really tough. I'm sorry to hear that you're going through that. I did see you touch on that a bit and that's, God, that's a wicked journey in itself, cancer. Yeah. It's, yeah, it's terrible. How's she doing? Uh, it's kind of, you know, it's not getting better. I'll put it that way. ⁓ it's been two years, so it's been a lot of ups and downs. And I think a lot of people, with, you know, a lot of people want to help and they, they think healing is like linear. You know, it's like, ⁓ do this, this and this, and then you'll have this outcome, but it's so up and down and sideways. Like it's so unpredictable. ⁓ so we're kind of in that unpredictable moment. We've had some pretty good, good months. ⁓ but yeah, at the moment it's like, we're trying to figure out what to do next. ⁓ she's been, we've been in and out of Mexico for like a year. getting treatment and yeah, there's some treatment in Mexico and Mexico is, they're good at, ⁓ healing. but not so much at emergencies. And it's kind of like, it's a long game. So, yeah. Yeah, cancer is different to like what we're talking about. It's cancer is just a wicked diagnosis and that's really tough to deal with as well. Especially because you see Everybody has such a different journey. You know, you're seeing people that come out the other side of it and are cancer free. And then you're seeing, you know, the other end of the scale of that, which is tragedy. And I guess, mean, with our situation, like you said about the hope and the reality, it's a bit like living in a constant state of grief and gratitude. at the same time. Because we're not necessarily facing something that we're fighting. We're fighting it daily to give her a longer life and a better quality of life. But the reality is she has a shortened life expectancy and anything could change for her at any moment, any day. ⁓ And just, I guess. Yeah, having that gratitude for all those little milestones and just every moment that you do get. But bringing back to one of your initial questions is still where does where do you fit into that yourself? Like, how do you still find time for yourself and not feel guilty about it when you're faced with like this constant state of grief and gratitude as well? Right. Which is a hard place because. Yes, it's easy to like feel guilty for taking care of yourself. But it's like, if you don't, then you can't show up for your kid or anybody because you're just run into the ground. ⁓ That's a good point, though. Grief and gratitude. It's now we're getting real. It's hard to be in that space because it's like even in the gratitude space. You I like to think that I see things more as they're happening for me and not to me. ⁓ But then it's like when those gratitude moments do come, like, yeah, you celebrate them and they mean a lot more to you than anybody. ⁓ But then it's still like in the back of your mind, like, when is this going to stop? Or like, when is this good moment? going to end because the next thing is going to come and then it's an emergent situation. And then like on your end, like another seizure comes and then it's like hard to just like stay all happy or positive all the time, you know? Yeah. And I think they're always going to coexist when you're going through something like any diagnosis, disease, whether fighting it or living with it constantly. grief and gratitude is always going to So then how did you like wrestle through, know, obviously you probably thought your life was going to look a little different. ⁓ How do you, how do you like wrestle through now it looks this way and this is what you're dealing with. I think that early stages, like as soon as you got a diagnosis at like six months old, I went through like all the stages of grief. And I think it's important that you do. And there are still moments where I return to those certain stages, but I think I've come out the other side just trying to make the most of her life. And I think why I did start posting online was to just try and find people. who were in similar situations that I could connect with because everybody I had in my life I couldn't connect with anymore. Just, it was very different for what was hard in our lives, you know, to be relatable. And as soon as Skylar got her diagnosis at six months old, the first thing I did was like go to Instagram and search for Dravet syndrome. And I couldn't find anything. I could barely find anything. I barely find kids. I just wanted to find a kid that like said a word, you know, everything is doom and gloom that neurologists had just told me all about. And I was like, But she's so normal right now. Like, what do mean she's gonna face all these challenges and have this intellectual disability and everything? So I guess that's why I have done what I've done and shared her story and tried to share the positive, like the positive moments in her life and her milestones. And even I say, I'm like, I will share when she speaks and does things because that's all I was looking for. Like, I just wanted to say that there was hope, you know? So I think I've gone on a bit of a tangent there. I've forgotten your original question. I did too. So did have you found anybody yet? Yeah, yeah. So I've got a few moms that I'm really close with and our kids are all similar ages, like give or take one year. There's a couple of Facebook groups to drive, but they can be a bit overwhelming sometimes. And the grief just hits you really hard in those groups that you have to limit. what you see, but it is nice to have some other moms, even just to talk about things, challenges your kids facing or what you do here or what you do for school or your OT or, you know, the stroll upgrade, the car seats, all these things that we have to do. Like we're going to have to a vehicle modification soon. Just to have some more insight of what they're going through as well. Yeah. I had a buddy ask me recently, he's like, Hey, I was, I was looking into like the grief cycle. Have you gone through that? I'm like, bro, I like, sometimes I go through all stages in one day. Like, that's a dumb question. Yeah. But you know, it's, I try to give everybody the benefit of the doubt that they don't know what they don't know. And they don't know what to ask either. Totally. They have no idea or the best question. How are you doing? It's like, what do want me to say? The one that gets me is that let me know if you need anything. I'm like, I don't have any more mental capacity to even think of what I need. And the thing is, everybody will say, let me know if you need anything, but only a few people will know that you will never ask. Yep. Yep. I just put a post out about that, about how like, ⁓ how to actually help somebody when times are tough. And it's, for me, it's, it's presence. Like just being, just knowing that you're there, even if I don't ask you for anything, cause that question is like, let me know what you, when you need something like I'm never going to ask you a and B half the time, I don't even know what to, what I need. But If you're just there and then, you know, maybe I'll ask you like, yo, let's go get some coffee or something. But yeah, that question kills me because it's like, yeah, it all goes back on on me. And then I'm going to be like, what? How about you just do something? This person said, let them know if they need anything. And if it's really not a family member or somebody you're incredibly close, incredibly close to you and you're not going to ask them for. Right. It's like, just show up and like, mean, we have some some friends. They'll just show up and like start cleaning the house. I'm like, that's incredible. Like, I never I didn't ask you. just figure like. If I was in your shoes, I wouldn't want to clean the house, so I'm just going to come over and clean the house. Yeah, like, that's great. That's what I need. And it's just little things like that. suppose if anybody's listening in that situation, like think about just tasks that you can do every day and weekly and things that help you function in your everyday life, because the probability is that the person who's going through this grief and these challenges probably doesn't have the capacity to do those things or nor have the energy to give to those things. And that's just like every day, you know, things that can be decluttered. and help us feel a little bit better. And it's even some of the littlest, easiest tasks and you just like can't get yourself to do them. Or like I own a construction business and I'm removed. It's in Idaho, it's in another state. But even some of the times like going and sending an invoice, it takes literally 10 minutes. But sometimes it was just like, I can't even like muster up. And I'm going to make money off of it. like, I don't even have enough energy to send this invoice in 10 minutes. I think mine's emails. I really have to finish a to-do list. Like I have to check things off. And at the moment I just feel like more is getting added than I'm able to tick off. And that load is just weighing on me. I'm like, just need to finish a task. Just to have a sense of accomplishment. Which sometimes too, it's interesting returning phone calls and you just know like what conversations are going to drain you and which ones are going to charge you. And those ones that I, I mean, I've lost friends. It's just like, you don't, you just don't have, you don't have it. And I don't know. So then how, how, yeah. ⁓ no, it's just, yeah, it's hard. Like, like I said, like you want to give them the benefit of the doubt, but I think that does just come a time in your life where you move through different phases and that gap between your realities and the ability to relate. The wider that gets, the less you're going to. be able to remain friends or have connections. Because really friendships are just a series of like me too moments. Like, you know what I mean? It's, you've to have stuff in common. If that gap gets too broad, then I can't sit down and have coffee for you when, you know, something you've had about their day or something. Like it's just my level of bad is just so far away from something like that. Right. I can't, I just can't. It's interesting. Has it like your journey made you more like, I know in San Diego we say salty. It's more just like, you know, you're just a little bit more on edge or you're just kind of like some of those like little things that people do complain about. You're just like, no, stop. Or you got like, kind of have a chip on your shoulder. You're just like, you know. It's... look. Everybody's level of hard is different. You know, and there are people out there that have a much harder level of hard than me. And I don't know what that feels like yet because I'm at my level of hard. So... It's just trying to approach everything with understanding. I've... Yeah. I think... The thing that probably ruffles my feathers the most at the moment... is just how many children and people, I guess, are coming out with like the ADHD and autism, which if you look into it, it just seems like it's a little bit more easier to get a diagnosis for. guess perhaps for us in Australia, what we have for our health scheme is like the NDIS here. And a lot of the people with these rare severe medical conditions the funding is being severely reduced and I don't know much about it be completely honest but it just feels like a lot more people are getting on to it and that's why the funds are getting reduced. ⁓ It's just, I don't know, I just see it left, right and centre and... It's, I think people are very confused with autism because you know, there's movies about it and glorify it that it can be honed in intelligence and they're completely missing the point of what profound, profound, profound severe autism is actually like to live with and not for the person, for the carers of them. I think there's a bit more... what's the word I'm looking for. glorification being one of them, compared to the reality of some parents and carers really live with every day. 100%. I was like, over here, autism is a superpower over here. It's like, no, no, it's not. And I taught, you know, non-speaking violent classes of autism. And that was kind of my That's what I know from teaching. And I would get some of my staff complaining about the day, how hard it was and blah, blah, blah. And early on, I'm like, you guys, we have no idea. We're here for six hours and we go home. These parents live a life that we have no idea what it's like. And that was a lot of the motivation for me to start this podcast, because I would see... all this glorification going on. And my reality of teaching severe or profound severe can be an offensive word, ⁓ profound autism. I mean, any word nowadays is offensive, right? But I was just like, we need to get these parents stories out there because what I'm hearing is nowhere close to what is actually going on. Yeah, like unless your child needs that 24-7 where their actions are unsafe to themselves. Yeah, it's not horrified. It's not. We've got so many locks on our doors and we've got to organ locks at the top and just, you know, she can reach the kettle. She can, every, everything needs to be triple checked. Yeah. And in the States when President Trump said, ⁓ autism is a horror show. ⁓ man. The social media blew up. And was like, how dare you say that? And when I heard it, I was like, ⁓ I know way too many parents who would say exactly that. And so I heard that, but that is. Yeah. And if people don't understand that line, that statement, they haven't seen it yet. They haven't lived with it. They haven't lived with it long enough to feel the impacts of what it does to parents and carers. Even siblings. Right. Yeah, the siblings is like the forgotten ⁓ person in a journey like this. the siblings. I mean, I've had a couple of siblings on the podcast and it's like hearing their reality of growing up with with a brother with, you know, non-speaking, violent autism, like they're always on on eggshells and they can't, you know, one one family. the daughter would lock herself in the room because she, if she was unsafe. And for a kid to grow up that way, like that sounds like a horror show. Yeah. that is the reality of it. how, so you own a Pilates studio. how, where do you have energy to do all that? on a business. I don't, but we, I do own it. I just don't have the energy. we have had like, we had our strength and conditioning gym and we opened Strong Pilates as like a second, cause it was very different to what we were doing in Mujirah, which is sort of like a regional town here. ⁓ it's challenging mostly to find staff and find good stuff being staff being in a regional town. So it is, it's difficult. don't feel like I've been able to give it my full potential to see where I could really get the business through. Because like I sort of said, we've morphed into one person that, you know, I can't work the hours that you need to work to make a business run like a full-time job. Even if we did a full-time job, that means it's split hours and that's a shared role between Daniel and I anyway. So it is hard to give it your full attention. ⁓ But I have recently found some really good staff that have come on board to help us manage that, which is good because it's really difficult to wake up at 4 a.m. and go and teach all morning and then not or even to just not be home at those peak times for your kids, which is the mornings and the bedtimes like that afternoon, which in our we call it here. And then all, know, if we are getting up and doing that in the morning, then that means the day is a bit of a write off and. we then don't get to do any exercise ourselves and being people who need that physical outlet, it is challenging because we both wanna work, we both wanna exercise, both wanna be home with the kids. It's just, yeah, trying to divide that attention. So you're still looking after yourselves. It's not easy. No, no, not at all. So how do you balance? like you and Daniel, like how do you, how do you do marriage? Well, we have shared family calendar and if you want to do something, put it in the calendar. If it's not in the calendar, it doesn't get done. So, and then otherwise it's just sort of priority of who needs to do what or just if a kid's napping or something, you know, somebody go do some exercise or go do some work or. Okay. Yeah. So it's very clear and structured. That's a very good practical hack. It's got to be in the calendar or is that happening? Oh yeah, it has to be in the calendar. So then do you schedule your workouts? I should, but I died. No one's doing anything in the morning. You don't want to do anything. Can I go for a run? Okay. If I can go for a run, that's Okay. Yeah. Yeah. Yeah. How, how is this like, how has it changed you as a person? ⁓ I don't know how to put into words how it's changed me. Like in a way I sort of had to grow up overnight. Like, you know, I never had to go to hospital and never been around hospitals really my whole life. I was used to be just quite a spontaneous carefree person. And then, yeah, with Skylar's diagnosis and the responsibility of learning everything about that being our first child. was just confronting in a journey in itself and like yeah, the things we've gone through with her and the decisions we've had to make along the way. Yeah, I guess I'm just a bit more. of a realist in my days and a bit more conservative, a bit more careful where I spend my energy and don't really do anything spontaneous or crazy, know, at end of the day, just need, it's a hard thing to put into words, but I know she has a shorter life expectancy and... I can't imagine my life without her, but I hate to imagine her life without me. Yeah, that's intense. It made me think another question that's funny that I always that I'll get or whatever, know, a buddy calls and we're like, hey, we're to go do this in like four hours. You want to come? like, can I get like two weeks notice, please? It's like I need three weeks notice or you know what? Sometimes three hours notice. I mean, I need all the time in the world to get organized. or you might message me and it's like, maybe I actually can do that. Like, yeah, was, no, It's like in the moment. No, not at all. What's something you wish someone had told you early on that, that nobody did? I don't know if this is something I wish people told me, but early on I wish the neurologist and the doctors stopped pushing to just increase her drug, like the dosage every single time she had a seizure because she was never going to stop having seizures. And then she ended up on five AEDs daily and quite relying on one of them is a Benzo now and it's like, you've almost reached max capacity and it's such a process to get her off and the side effects and everything. Like I just wish we took more time and I had a bit more education around that area to just not let them increase, increase, increase, increase, add, add, add. That's just one thing I wish I knew earlier on. Is it possible? I don't know how to phrase this. Like when you see so many like intense and you live in so many intense moments, do you like, do you feel it makes you stronger or for the next ones to come? Or is it like, you just kind of like have your game face on and you're kind of like numb to it? I don't know if that's the right word. I we're kind of numb to it. Yeah. Yeah, like we this conversation where like, I mean, Imagine if you put our first triple zero call against our current triple zero calls, which, you know, in your country it's nine one one. Like the conversations we had in that first year and versus the conversations now on the phone are quite calm. But having said that, we also have all the equipment now that we need to, you know, keep her breathing per se ⁓ until the current medics get there. And the paramedics know her well, so they get there very fast too. So they're fantastic. But what was your question again? No, was just like, if you like you, I mean, you answered it like you kind of get numb to it. Yeah. Yeah. I think, I think it's you just you ticking boxes of everything that needs to be done because you know what needs to be done in what order. Right. Right. So then how do you keep your nervous system like regulated? when you live in such a stressful reality. don't acknowledge it. just... Yeah. Courtesan levels are just always raised. I mean, like, yeah, I was trying to have like a business call the other day and I was like, I gotta go, Scarlet's having a seizure. It's just our life at the moment and just having to be close by that you are on call 24 seven. it's. Yeah, Daniel and I don't ever call each other. Or if we do call each other, the first thing we say is she's OK. If you genuinely need to call the other person, because when when I see his name and just it's it's not good. So we know that we don't like to see each other's names come up on our phones. That says enough. That is like the reality in one sentence. Yeah, it's like, don't. Unless it's an emergency, just don't call me or yeah. Or greeted with everything is okay. Oh man. So you have been going at this for five years. You run and own a business. And now you're giving back with your nonprofit. Can you tell us a little bit about Little Sky Eyes Foundation and how that came about? Well, the name came about because her name is Skyla and she has blue eyes. So that's why we call it Little Sky Eyes. And the reason we did it. So it's been nearly two years now, but we've been fundraising for say perhaps four years now, I think by her. one-year-old birthday we started. ⁓ So much money was getting raised and it was going to the Drava syndrome foundation which is perfectly fine. I think they're in the US or even a bit of the UK which is amazing they support research they support so much stuff but the Australian families who needed grants to help with challenges that kids were facing for medical equipment that you needed now just to give your child now a better quality of life and care and keep them safe. There was a bit of a gap there. Those those grants weren't able to be provided. So that's why we decided to do this one at the moment. Yes, it is just an Australian charity. So it's for Australian families, ⁓ children and their families who have Drave syndrome or a genetic epilepsy. So basically any rare epilepsy or genetic mutation epilepsy as well. So you've had it for four years and what do you hope to accomplish with it? I just want every child to sleep safely and for their parents to also feel like their child has a safe place to sleep because like safety surround beds, they cost around $22,000 and our NDISC does not fund them. So you have to get a grant or pay for it yourself. Wow. Man. I say, yeah, on the other side of it is like the financial burden. ⁓ burden is probably a bad word. The financial reality stress. I think burden is the right word because it is a financial burden that we all face that other families don't. Like the amount of money we've had to spend on equipment or other safety pieces to just ensure. that her oximeter and her oxygen and her seizure monitor work and have all those things in place. Like, they're expenses that you don't need if your child is. You know, you're typical. Right, right. What keeps you going? on like a rough day and you're like kind of maxed out. How do you push through it? I just think the love for your child just makes you stronger. You don't get a choice. You don't get a choice. People say, I don't know, I couldn't do what you do, but you would. You would if it was you because you don't have a choice. You love your child. Right. I know. That's the exact response I give. like, what are you going to do? There's no other option other than keep going. One day at a time. it is. We'll close it out with a couple more. If Skylar could one day hear this episode. What would you want her to know about the way you've been ⁓ showing up for her as mom? If I'm being a realist, Scarlett isn't going to understand any of this episode of the conversation that we've had. But if she heard it, she would probably just say, mommy. And do you know what? I would just want her to have my voice to give her comfort. Yeah, that's my realism. Come in. Well, that's good. That's good. You know. So what advice would you give to others on a similar journey or just on a journey of heart? Go through the seven stages of grief and feel it all and know that grief and gratitude can coexist. But more importantly, just know that every journey is different. So somebody else's journey doesn't mean that's going to be yours either. So try to look for the good and don't get too overwhelmed by the bad. Right. Take it one day at a time. One day. And that's why I always think like, ⁓ today was hard. Tomorrow might be, but it might not be. Let's just let's just err on them. It might not be. And then when you do get those good days, it's like, ⁓ that was great. But then always in the back of your head, it's like, when is the bad day coming? But that's just a mental battle. All right. Well, where can people find you on Instagram? Is that the main? Yeah, mostly on Instagram just at Bianca.Coglin or Little Skies Foundation. That's my main one. Okay. And then ⁓ there's a Little Skies Foundation on Instagram as well. Yeah, there is. Not super active, but it's on there. So got me Australian listeners. Yeah, yeah. I've had a few Australian podcasts. I have another one coming up. ⁓ don't know where she's at. One of them was in Tasmania. Yeah. Is that close to you? It is this state below us, but we're separated by the ocean. Right. Yeah. Cool. Well, Bianca, thank you so much for being on. That was a blast. We got a... We got into some, I don't know, intense moments. ⁓ But it was helpful for me. So thanks for all you do. And it's inspiring to see how you keep showing up, really. That's what I came across your account. I kind of had ideas on what a life, what your day to day looked like, just from my experience with kids with epilepsy. And I remember just like, it was so stressful. Like the medical side of it, know, like teaching autism, it's like one thing, but when you bring in the medical side, it's a whole different level. And so I see you showing up and you have a event coming up. Yeah. For little skies. Yeah. The main event coming up is the purple ball. So the gala ball, that's how big is fundraiser for the year. ⁓ nice, what do you do at the bar? Dance? We do like silent auction, live auction, so in the process of getting valuable items that can be auctioned off and perhaps raffles, whatever we do on the night, entertainment, just things like that. Things you do at bars. Yeah, the main purpose is to raise funds, so. Yeah, get donations, get sponsors and sell the auction items. So cool. So make sure make sure you find Bianca and try and get involved in Little Skies. I'm going to I'm going to check it out. So I appreciate appreciate this hour and taking time out of your day. I know you're probably half of your mind was in your life. I gave you my full attention Zach. My phone's here already if it was needed but it wasn't needed so that's good. No that's great. ⁓