EP 43 | How Running Helped a Couple Carry Their Daughter's Memory

Can running help carry the memory of a child?

When Dan and Alicia welcomed their first daughter, Eva, into the world, they were told she had an incredibly rare genetic condition and was unlikely to live beyond childhood.

For the next seven years they navigated specialist appointments, uncertainty, and unimaginable heartbreak.

Throughout it all, they kept running... including Eva and their second child Ivy as part of their routine. The role the running community has played throughout their journey is truly remarkable.

This is a conversation about grief, resilience, community, and the remarkable little girl who continues to shape their lives long after her passing. 

In this episode:

• Eva's Cockayne Syndrome diagnosis just weeks after birth
• Navigating seven years of uncertainty and hope
• The role running played during the hardest years
• Keeping Eva's memory alive
• What moving forward really looks like after loss

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About Runbelievable

Runbelievable is the podcast for every runner. From your first parkrun to your 100th marathon, from walk-run intervals to dabbling in trail running, every runner has a story worth telling. Through honest conversations with runners from all walks of life, Runbelievable explores the challenges, achievements, setbacks, and experiences that connect us through running and shape who we become.

Transcript

Learning to Carry Love Forward

Joshie 0:00

When I first met Alicia and Dan, I knew them as runners that occasionally turned up to training. I had no idea that behind every session was a beautiful little girl with a life limiting condition. Sitting down to capture their journey, I was particularly keen to explore how they managed to keep running despite their circumstances. I'm going to be brutally honest, my perception could not have been any further away from reality. They wouldn't have had it any other way. They gave Eva the fullest of life, and the running community were there all the way. On reflection, their story isn't about grief. Rather, learning to carry love forward in a new way. Being able to capture their journey face to face was truly an honour.

Dan 0:45

I don't think anyone else would have done anything differently than what we did. I don't think we're necessarily special or superstars because people just step up and do what needs to be done.

Joshie 1:00

Hello everybody and welcome back to Run Believable. I'm your host, Josh Richard, and each week we chat with runners from all walks of life to explore how running has shaped who they've become. Today we're doing something a little bit different. For the very first time on Run Believable, I'm joined by a couple. Now, running teaches us that progress usually comes one step at a time, but life isn't always like that. Sometimes we're faced with challenges that no amount of training can prepare us for. Today's conversation explores what moving forward can look like after unimaginable loss and the role that love, family, and community can play in helping us find our way. Alicia, Dan, welcome to Runbelievable. Thanks, Josh. Good to be here. Before we dive into your story, I'd love to share just a very quick moment from our Run Believable community. This week's Run Believable moment comes from Jordan. Now diagnosed with an autoimmune condition and just two years ago facing the prospect of having his colon removed, this guy did the unthinkable. He ran the Gold Coast Marathon. Now, along the way, he battled chin splints, cramps, sunburn. I think he even fell behind the tailwalker at one point as well. But because that wasn't enough, he doubled down with having exploding maple syrup gels in his pockets. I think at 30Ks. And he ultimately crossed the finish line just two minutes before the cutoff. What an absolute legend. Now, look, his post-race videos truly speak of authenticity and capture their unbelievable spirit in no way I've seen before. And Jordan, if you happen to be listening, please do get in touch. I think you would make the perfect guest. Now, Dan, Alicia, I'd love to start our conversation before running. Can you tell me how the two of you first met?

How Alicia and Dan Met

Dan 2:48

Uh, we met, Alicia and I met playing hockey. Okay. Um, and we played at the same club. We saw each other around the club and um eventually started playing social hockey together, and then nothing eventuated, but we had uh shared friends and we were at a party together and uh here we are.

Alicia 3:11

Doctors and nurses party, in fact, where I was dressed up as a nurse and Dan was dressed up as a doctor. Really.

Joshie 3:18

Are these photos? Yes, definitely photos.

Alicia 3:20

And I think it's probably one of the only parties that Dan's ever been at sober. Yeah, obviously. So I don't know what would have I don't know what would have happened if uh truly don't know.

Joshie 3:30

So what year was that?

Alicia 3:31

Uh 2010.

Joshie 3:32

2010. Okay, awesome. And so how long after that did you get married?

Alicia 3:36

Uh 2014 we got married. So awesome. Yeah.

Joshie 3:40

So can you tell me? So you met through hockey. Can you tell me what role being active in exercise has played in your relationship?

Alicia 3:48

I think it's probably what's um kept us strong for all these years, given um I yeah, I guess what we've been through, which we'll talk about later. But I think um we're both adventurers. So we love hiking, we love going to the beach, we love running together, obviously. Um, we love playing, both playing hockey. Um, but we also just like getting outdoors and and like, you know, enjoying life. Enjoying life, yeah. So we'll go bowling, we'll go, you know, play putt-putt. We just love doing active things. So I think that's one of the reasons we've you know had a strong relationship is because we love doing those types of things together.

Joshie 4:23

And that's really cool. So I didn't realise that you actually met through exercise, through uh hockey. So I guess you it's not as if activity, recreational activity has galvanized your relationship, was already a feature of your relationship when you met. Absolutely. That's really cool. Um, now look, it's uh no secret that uh we know each other. Um, in fact, we've become really good friends in recent years. And uh I don't know, Dan, if you remember this. So my very first memory of you, I think it was mid-2022, you'd come along to training. I can't remember Leash, if you were there. And I was like, oh, this guy's really cool. Like I had a really good chat to you. It was awesome. I remember afterwards I said to you, Oh, so when do you reckon you'll be back next? And you went, Oh, six months. I'm like, what? I was really gutted because I had uh, yeah, don't know if you felt the same way about me, but I was really gutted because I was like, Yeah, man, I wish this guy was here every week. But I think you used back then running was used as like an off season activity.

Dan 5:23

Yeah, well, I was training on for hockey on the same nights that um the run club was on.

Alicia 5:31

So and obviously we had two kids at the time, and so it was hard for us both to go to run club. So I think it was an occasion. We had um Eva Scarer looking after um Eva and Ivy for once when you started coming to training? Yeah. So we were able to go together, which was nice.

Joshie 5:45

Did you find it tough during those years when I mean Eva was unwell for most of her life, but in terms of your relationship, did it take much of a hit not being able to pursue exercise and recreational activities together? Was it something that you missed, or were you just so knee deep in caring that you didn't even notice?

Alicia 6:06

Really let it impact that to be honest. We knew that um for our own mental health that doing those things was really important for us both. So we were very supportive of the other one, continuing to play hockey. The only time I stopped playing hockey was when I was pregnant. It wasn't when we had um the the girls. Okay. So yeah, we always kept doing those things actually. And it became it actually became more important after we had the kids.

Joshie 6:30

Yeah.

Life With Eva

Joshie 6:31

You know, when I initially got to know you guys and Dan, I remember that first night that you were at training, there was nothing about your demeanor and even Leash when I met you. There was nothing that suggested that things were pretty tough at home. And I don't know whether or not running was just that outlet, just somewhere where you went, you know what, I can have this as something for me. Home life was very tough. Um, but can you I guess take a few moments to explain to us what day-to-day life looked like during that time?

Dan 7:03

Um well, to not answer your question, but to say something else first. Um like people say, Oh, how do you do it? How did you get through that? Like, there isn't really any decision or like there's yeah, there's no option. It is just what life is like. And so it to us was tough at times, but it was also just life.

Alicia 7:27

And and we didn't we loved Eva. Yeah, and no one else loves their child, so you just do what you have to do, you know.

Dan 7:34

Yeah, necessarily tough because of Eva. It was just tough because you know, she was happening, but no different to any other family, in my view. Um, and I don't think anyone else would have done anything differently than what we did. I don't think we're necessarily special or superstars because people just step up and do what needs to be done.

Alicia 7:58

You know, when we got Eva's diagnosis, the first thing that we did was write a letter to all of our family and friends about it. And I think we were really worried that it would change the way that people interacted with us. We were very social. We had a really wide friend group, and I think we were concerned about how that would impact as in as in that they'd withdraw or something. They'd feel uncomfortable, like having a child with a life-limiting condition, like that they had to, you know, interact with. And so in that letter, we said, we don't want you to treat us any differently, we don't want our lives to change, like you know, she's just part of that life now.

Dan 8:33

We don't one of the things you wrote, um Nug was that we don't want you to feel uncomfortable, we want you to ask if you have questions. Yeah, and we really opened the door for people to talk about it.

Joshie 8:44

So,

Understanding Eva's Diagnosis

Joshie 8:45

how early on in Eva's life did you know that she had a condition that would impact her longevity? Two weeks. Two weeks, okay. So it wasn't in utero.

Alicia 8:53

That's a very, very short version way of saying it. So Eva was um well, when she was when I was pregnant, she we I think I went for a scan maybe around 24 weeks or something. And at that point they were like, oh, like her gross has basically stopped or slowed down very dramatically. And at that point we went started going and seeing um a specialist, and we were getting scans kind of probably every two weeks. And they diagnos uh diagnosed me, I suppose, with um IEGR, which stands for in uterine growth restriction. Um so basically it's just like we don't know why that this child isn't growing, but it's not growing as we would expect. Um, and they kind of put it down to probably like a placenta issue.

Dan 9:41

And the placenta was an issue, but yeah, as it turns out, it was so was it is it her um a hereditable trait?

Joshie 9:50

Yes genetically.

Alicia 9:51

So um yeah, so to continue down that path, we um ended up having an elective cesarean at 36 weeks because she'd basically stopped growing and they were like, she's not gonna grow anymore inside you, she's better off coming out. Right. We can um, you know, help her grow basically.

Joshie 10:08

Oh, okay.

Alicia 10:09

She was only 1.8 kilos when she was born, and then um she was in special care for three weeks. And to get to the answer to your question, during that three weeks, about for the first two weeks, we got told she's perfectly fine, she's just small, like there's nothing to see here, basically. Um except for all of the symptoms and then about two weeks in, we they were basically like, Oh, it's weird her head's not growing. Um, and then they did her hearing test and she didn't pass the hearing test. And then they were looking into her eyes and they found cataracts. So at that point, it was quite clear that she had some sort of genetic syndrome, all of those um symptoms were only present in certain syndromes.

Dan 10:50

But it's Alicia did some Google searching and had the diagnosis, took it to the pediatrician, and the pediatrician said, Oh, she wouldn't have that, it's too rare.

Alicia 11:01

Yeah. So that was at six weeks, and then it took us another um yeah, probably nine or ten months to get a clinical a proper diagnosis. Yeah.

Joshie 11:10

So can you tell me what it was like those early months, sort of trying to navigate such a blur.

Alicia 11:18

Like I remember it. I think um we we were in this, like it's it's a weird space. So you're kind of constantly googling all these symptoms because you're like, there's obviously something wrong, but you're also so in love with your with your child anyway that it doesn't really matter. And then there's a lot of hope that it it's not what they think it is, and it will just kind of get better. But it it probably became pretty evident within the six-week mark that that wasn't going to be the case. And then unfortunately, when I figured out what I thought her diagnosis was, um, I mean, they didn't believe me for a long time, but I I figured it out pretty early on and we knew at that point that it wasn't it was gonna be a life-limiting condition and there wasn't a good outcome. Um and so then I guess it was a period of acceptance. But you know, we just got on with it, didn't we?

Dan 12:07

Like I remember some specialist appointments and yeah.

Alicia 12:10

I remember some nights though waking up and like you were still watching TV or something, and I'd be gone to bed and like crying, like running out to you crying because like it just hit me all of a sudden. So I think it just came in ways. Like a lot of the time you just got on with it, but there were certainly periods where it hit you more than others.

Dan 12:28

Was Eva aware of her condition? I don't know. That's a really interesting thing to think about though. Not sure, like, was she?

Alicia 12:36

I didn't think so. I think Eva was just happy. She was just she was one of the happiest children I've still ever met to this day. For for I mean, obviously there were periods where she was unwell and um very uncomfortable and a lot of pain. But for a child who um went through what she went through, she was a very happy child.

Joshie 12:56

What was it like then? Um, because you've since obviously um had Ivy as well. Was that in the back of your mind at all, sort of going through that process of pregnancy and delivery that you know, if this was a I guess a genetic condition that there was a potential um it's actually quite a high percentage chance as well of us creating another uh person with the syndrome?

Dan 13:19

So it's 25% chance. Really? That high? Yeah, because we're both um carriers, carriers not presenting the thing. So there's a 50-50 chance from each of us, so 25% chance of us creating another person with the full syndrome.

Joshie 13:36

And did you only find that out after Eva had been born? Yeah.

Alicia 13:39

Uh yep. That we were carriers? Well, because it's not something so obvious, of course, there's lots of testing and things that you can do um prior to pregnancy and in pregnancy, but they don't test for rare conditions because there are so many rare conditions. So unless you um go and get the genetic testing kind of up front and do all of that family history, which is really expensive, then you wouldn't be able to bought 15 hundred bucks or something.

Dan 14:01

But I think they actually do more of that now. I've no I've read I'm pretty sure they do more of that. Yeah. Okay. Um but yeah, so we actually to answer your question, we actually had IV tested in utero. Uh the outcome.

Alicia 14:13

But but don't forget, we went through three runs of IVF before we got to that point.

Dan 14:17

Did you really?

Alicia 14:18

Yeah.

Dan 14:18

So all the embryos that we produced had.

Alicia 14:22

We were just telling Josh's story before we got onto this podcast about how we got um we won the knock of cash in 2018. And friends organized one of our really good friends, Lisa, organized um that for us. And part of the reason that she did that was because we knew we had to go through IBF. Um, that we we wanted to go through IBF so that we could test our embryos to make sure that they didn't have cocaine syndrome before we um went through with the pregnancy.

Joshie 14:48

Okay.

Alicia 14:48

So I went through three rounds of IBF between 2018 and 2019, um, which was really, really awful. Um, and any embryos that we did get, or I think we only ended up with two, but they both had cocaine syndrome.

Dan 15:04

Um But I mean, it's not that you we ended up with two, they have to be the perfect embryo in order to test them. Yeah, really small. Yeah. They take a number of cells, and that's a significant portion of the embryo's mass at the time. And so they have to be absolutely perfect embryos. Whereas to um create a good, healthy baby, you don't need that perfect embryo.

Joshie 15:28

But in the end, it sounds like Ivy was conceived naturally.

Alicia 15:31

Yeah, except for the third round.

Joshie 15:33

Wow.

Alicia 15:34

Yeah. We because we didn't have fertility issues per se. Like we got pregnant naturally both times. So for us, we just expected IBF to work. We didn't expect it to be so challenging. Um, but it was really hard for us to create embryos, and then the embryos we did create um yeah, had cocaine syndrome. Um, so in the end, like I I've always wanted to be mum, so it was not negotiable for me that I would have another child. So we just made the decision that we were just going to try naturally. Um, and then at about, I think we had to wait until um Ivy was 16 weeks, you know, before we could um get the tests done.

Joshie 16:11

You know,

Finding Support Through Running

Joshie 16:12

I remember in when Ivy was quite young. I remember that Dan and yourself Alicia as well, you um would turn up at Parkrun with a dub with a dual pram as well, like you still wanted to include them both in exercise and sell, you know, continue to celebrate Eva's Eva's life, which I think's fantastic. Um what can you tell me about I guess the the role of the running community when um uh uh during those final years of Eva's life?

Dan 16:41

Well, I think running was so important to both of us because we love being active, we love having fitness and health in our life. Um we really wanted to make sure that that never stopped. And Parkrun is a beautiful community. Um, lots of people that you see ri regularly that you barely say more than you know a few words to, but they're kind of much more than just strangers. Yeah. It's weird because uh yeah, it feels really tight at Chermside Park during that time.

Alicia 17:12

Um I think for me it probably it wasn't just the last few years of Eva's life, it was the whole time it was such a major component. Like I I got put on bed rest for the last weeks of being pregnant with Eva because obviously she was small and they didn't know why, so they're doing what they could. So I could have quite a long time. But um, in that period of time, Termside Parkrun had opened um while I wasn't running.

Joshie 17:34

Okay.

Alicia 17:35

My really good friends, um Jess and Mora, who I run with a lot, had started running Parkrun there. And so it took us a while, but eventually we started going there and we met that community. But at the same time, I also joined the in-training community um in 2016, which is the year we had Ava, in the same year I joined that in-training community. So it felt like that was my opportunity every week to like get out of the house and go and do something like with the community, and like that was really it was good for myself, but it was also on the social side of it. And so I think like the running community has been there from the very beginning, really, hasn't it? I think church, I don't know exactly when churmside park runs.

Joshie 18:15

2014. Oh, was it? I think. Well, hang on, they just had they had their 10-year anniversary last year, I think it was, and it was shut down for a while. Yeah, but coach during COVID, they weren't able to run them. So I think it was 2014.

Alicia 18:28

Okay. Yes, switched, because we were doing Mitchelton for a while, and then maybe they switched to Chermside during that period where I wasn't. Yeah.

Joshie 18:36

And both the kids really seemed to love Parkrun, like they seem to really enjoy being out there and well I hope so.

Alicia 18:44

We made them do it anyway.

Joshie 18:46

What can you tell me about the bond that Eva and Ivy formed?

Dan 18:49

Oh, I

The Special Bond Between Eva and Ivy

Dan 18:50

was really, really special, uh, really quickly. Immediately, actually. So um Ivy was born a day before Eva's birthday in COVID in the middle of a lockdown. Wow. And we got special permission for my mum and dad to bring Ivy into the hosp sorry, Eva into the hospital the day after on Eva's birthday, uh, to meet Ivy. And so it was a very, very special. Yeah. And um Eva was just oh how to describe it. She was like she hugged Ivy's face.

Joshie 19:27

Yes. Oh my gosh. She was just immediately that's beautiful. Stunning.

Alicia 19:33

Yeah, yeah, it was amazing actually. And then there's lots of photos, like obviously we had the double pram when they were little, and we used to push that a lot of them just like Ivy would grab Eva's hand and they would just hold hands in the double pram when we were running. It was yeah, it was beautiful.

Joshie 19:47

And

Saying Goodbye to Eva

Joshie 19:48

so was it uh Eva passed, was it 9th of July 2023? Yeah, yeah. Um, did you feel comfortable talking about, I guess, those final days with her?

Dan 19:58

Yeah, sort of.

Alicia 20:01

Um, so we always knew that oh, I think about a year earlier, so we had this amazing um geneticist actually. Um, well, he was a metabolicist, but um, Dr. David Cohen, who we saw at the um Children's Hospital, and he told us about a year before, um, he was the only kind of expert, not expert, but yeah, he was the only one that knew cocaine syndrome in in Brisbane. And he told us about a year before Eva died that look, you probably only have a year left with her because her life expectancy was five to seven and she died at seven.

Joshie 20:33

Yeah.

Alicia 20:34

Um, and so he kind of we kind of knew that the next time she got seriously ill, like with a flu or a something, that that could be the end. Um and we kept Ivy in um in home child care for most of her life up to that point. But it got to a point where she was kind of at that age where we needed to send her to proper child care and we were really worried about that, weren't we? Because we were worried that she might get sick and bring it home and but also it wasn't it was not preventable. It was going to happen so.

Joshie 21:01

She was getting sick at home.

Alicia 21:03

Yeah, she's gonna happen one way or another. But yeah, that's what happened basically. Eva ended up with um RSB and influenza B, I think, um, at the same time. And she'd just come off the bat of hand, foot, and mouth disease, so her um immunity was really low. And then she got both of those illnesses at the same time. And I think it was a Wednesday we took her to, she wasn't breathing very well. She was kind of like taking really shallow breaths, and we took her to Prince Charles Hospital. Um, and then I think that same evening they ended up transferring us to children's hospital. Um, and it was this the following Sunday that she passed away. So it wasn't, it was probably only a day or two after we went to hospital that they told us they didn't think she was going to make it. But as parents, funny, like you just we just held on hope, I feel like, to the very last minute. Like I think on that final day, we'd been in the hospital for so long, we took Ivy out for a little walk around.

Dan 22:00

On South Bank and we came back, and um we'd seen some like improvements in the hours before that, I feel like I think it wasn't necessarily improvements, I think it was more plateauing in the decline.

Alicia 22:12

Yeah, yeah, maybe. Yeah, and we were still holding out hope, but um, yeah, I mean it yeah. She she basically waited for us to come back from that walk to die, we think, because um as soon as we got back, we were holding her in our arms and sorry, um she started to the yeah, we could the machine started to kind of um indicate that she was going to take her last breath, but I it it definitely felt like she waited for us to be there. And I think that's just so eva. Like she just loved being with us, didn't she? Like she her absolute favourite thing in the world was be just being cuddled by the people that she loved and she hadn't bonds with a lot of people, um including both of our parents, but I think um yeah, there was something special about our bond with her.

Joshie 23:02

Um you know, it's it just I'm curious about what it was like for you uh immediately after Eva passed, I guess, as a parent, even though you knew that Eva didn't have a long life expectancy, I imagine that nothing can truly prepare you for her.

Alicia 23:20

True. It but it's it it's also different, I think, because um I've read a lot about grief since and I think there's anticipator anticipatory grief. So I think we actually grieved for seven years before she died.

Joshie 23:35

Yeah.

Alicia 23:35

Because you know that that and you you picture it, you imagine it, because you know that day's gonna come, and so you're almost well, I don't know about you, but you kind of you you think about that what that's going to be like, and so you you're almost preparing yourself and your brain for that. Whereas I think if you lost a child very suddenly without expecting it, it it would be a very different type of grief.

Joshie 23:56

Everyone's different, and every parent, I imagine, has a different way of um sort of coping and navigating grief. Um you both seem to really want to celebrate Eva's life and honour her legacy. Um, I remember there was a park run that I think it was a a week or two, it was pretty soon after.

Alicia 24:16

It was

How the Running Community Showed Up

Alicia 24:17

um six days up.

Joshie 24:18

Six, yeah. Um, and I thought that was just a lovely touch, the way that the running community really responded to help celebrate Eva's life. I mean, do you do you remember much about that time? It was a blur.

Alicia 24:29

Like we uh had we gone home from Hummingbird House at that time. Oh, it was still at Hummingbird House, which is across the road. Yeah, we stayed at Hummingbird House for a week after Eva died so that we could stay with her until the funeral. Um so it was all it's all a bit of a blur. But yeah, we um some of our friends organized for there to be a bit of a celebration. So everybody dressed up in really bright colours. Hummingbirds came down um and we did some fundraising for them, I believe, at that event as well. Um and it was amazing. Like I think the way that everybody showed up for that, it was really special. It was so hard because when you're grieving, it's like it's a it's a weird feeling. Um but I'm really glad that we did that. And I think one thing I reflect on, and obviously Eva's anniversary was only a couple of weeks ago, and a memory popped up of that parkrun. And I noticed that all of these people had commented on the GM Side Park Run post about that event that we'd never spoken to or um had met, but they all knew either. Oh, I think that just really brought home for me what an impact she had on people's lives that we didn't even know. So because she looked a bit different, I suppose people probably noticed and they um, you know, saw us there every week and they probably asked questions and like so it was just actually really amazing thinking that like she her impact went further than we even realized. Yeah, I remember at that time.

Dan 25:50

Yeah, and and there was a lot of uh message of support as well.

Alicia 25:54

Yeah.

Joshie 25:54

Um you mentioned Hummingbird House. Uh you're happy to talk to me about their role throughout Eva's life.

Alicia 26:02

Yeah, so they're the only um children's hospice in Queensland. Well, they were, I believe they still are. And so they obviously look after um babies and children with life limiting conditions um before death and after death. So it's a very special service. So we did stay there quite a few times with Eva when she was alive, and it's just really like a way to get some reprieve from the day-to-day caring responsibilities. Eva was tube fed, and obviously she was in Nabies a whole life and all of those types of things. So it's like a full-time caring role. So it was for us to kind of still be with her, but have that extra support from other, you know, qualified nurses and things to help you care for her and get some particularly catch up on sleep because there were certainly I don't know, it's it's hard to imagine now, but back then we've slept very little, particularly Dan. He was very alert to Eva, um Eva's cries and things during the night. So the sleep was a massive issue back then. So we went there a lot to catch up on sleep.

Joshie 27:00

Okay.

Alicia 27:00

And when Ibe was born, I think she was only two weeks old, and we went and stayed there for about a maybe a week or a few days or something. Two weeks. And to get some help um from them as well. So then they were a huge impact. And then, of course, after she died, we basically drove ER after she died from the hospital to Hummingbird House. Um, they have some pole rooms there. We basically you can I don't know if this is too much for the audience, but where you can keep the um body um so it doesn't have to go to a morgue. Oh, okay.

Joshie 27:38

Yeah.

Alicia 27:38

Yeah. And we stayed with her so that we could go and visit her. And um, we got during that time we got fingerprints done and like there's some footprints over there that we got done, and that was all after she had passed. Um, so they do some really amazing things during that period.

Joshie 27:53

We'll talk in a moment about what you've sort of done to honour her legacy. There's some beautiful touches that I know you guys have both incorporated into your lives, which I think is awesome. One thing I'm curious to explore, um, and at the risk of sounding like this is too genderized, um uh when parents lose a child and in just in general, men and women grieve very differently. Has that ever been an issue for you guys and your relationship? I don't think so.

Alicia 28:20

I think we probably have grieved differently, but we've been very um accepting of the way the other person grieves, I think. I think probably after Eva died, I wanted to like take some time off work to like reflect and just kind of be in my feelings. Like I wanted to feel my feelings. Whereas Dan wanted to go back to work straight away and just like get on with it and not have to think about it every second of every day. So that was just difference.

Joshie 28:48

But and do I recall correctly? I think at least you wanted to travel for a period of time.

Alicia 28:54

Yeah, I I think we talked a lot about maybe going on like a three or six month holiday after she passed to um just be with each other. Um, but yeah, it just never really worked out that way. But I still took a couple of months off work and Okay.

Joshie 29:08

Did you feel well supported um in those immediate months after her passing? I think so. Yeah, I I felt I felt supported.

Alicia 29:18

Yeah, yeah, yeah. I think a lot of people don't know don't what to do or how to help, which is completely understandable. Um, but we people were there when we needed them. Yes, there, which was um yeah, really nice. Yeah.

Keeping Eva's Memory Alive

Joshie 29:32

I I know that's um one thing that uh you and I have spoken about previously is that over time you've noticed that people don't really check in that much anymore. Um, but you really want people to speak about Eva. You love speaking about her and you want to continue to keep her memory alive. Um I guess if people are listening to this, um how what would you want, how would you want Eva to be remembered and how would you like the community to, I guess, br respond?

Alicia 30:06

Both of it. Terry here. Um I think I think I mean, yeah, Eva obviously had up and down moments, and there were times when she was really sick, but um overwhelmingly she was a very happy um child, and I think she had very good intuition, didn't she? Like she knew she knew people like were good and bad. I know that sounds so really funny, but like there were per certain people that she just connected with overwhelmingly. Um just like she gave all of her kind of love and soul to. Um, so I think just that she, even though she has you know a difficult illness and she obviously wasn't verbal, she still communicated in her own way. She was happy, um, she yeah, I don't know what else to Going through what you have, there must be a huge amount of people that have supported you throughout.

Joshie 31:01

It's not going to be possible to thank everyone, but is there anyone in particular that you'd like to give a shout out to? Very well thinking about it. Um, yeah, we've got the very close friends. You might need to think of them.

Dan 31:19

Um yeah, so uh a lot of very, very close friends were extremely supportive. Um uh w two people in particular, that um Fiona and Patrick, good friends. They came to the hospital every single day when we were in the hospital while Eva's dying.

Alicia 31:38

And um And pretty much came to our house for the next two weeks, almost every second day as well. Drove across town just to kind of make sure that they knew we were there, they were there for us. Yeah.

Dan 31:49

It was really special.

Joshie 31:52

But it sounds like you want people to continue to check in with you and ask how you're you know, how are you both doing? I should have asked it at the start.

Alicia 32:00

The irony of this of like we're actually really, really yeah, we're okay. We um we recently went to New Zealand on a bit of a family holiday, and on the last few days over her three-year um pass anniversary of her passing, we went to um Lake Tekapo, which is um somewhere we went with her on um a holiday in 2019 when she was at her best health course. One of our favorite holidays, we just like followed um a trailer in the South Island going to all of the hot springs.

Joshie 32:29

Okay.

Alicia 32:30

So at Lake Tekapo, one is about one of our favorite places. So we went back there just last week um Ivy and showed her that and like shared a lot of shared a lot of memories um around that time. And I so I think that's what it's all about. Like we just we never want to let her memory fade away. And um, I think even though Ivy was only three when she passed away, she talks about her all the time, and she might not have really solid memories, but I think because we talk about her all the time, she remembers those things as well. So I think that's one of the reasons it's so important to us that we were so young.

Joshie 33:09

At the time you're both living in Brisbane. I mean, we now sit here in the um the beautiful Sunshine Coast Hinterland, it's absolutely gorgeous. Um, but can you tell me what was it like having to um pack up Eva's room before you moved here? That was it was hard.

Alicia 33:24

Yeah, it was really hard. Um we've still got most of the things on the top of the cover, to be honest, because um it's hard to throw them away. I remember having a moment um when we were packing up her room and I kept smelling everything because I was trying to get sent back, but it just I couldn't find it, and that was really upsetting. And like knowing that we were leaving that room where she'd slept her whole life um was really difficult. And so I was just trying to find something that we could like take with us that memory, but and washing machine did its job it was tough, but also Eva doesn't live in that house, she lives with us, so it doesn't really matter where we are, she's with us. Yeah.

Joshie 34:09

Something I'm genuinely interested in exploring is um, you know, with with Ivy, I mean, growing up now without a big sister, how do you go about keeping her um Eva's memory alive? I mean, do you wait for Ivy to um talk about Eva or do you take to like set out set aside time every so often to talk about her?

Alicia 34:33

A little bit of both. We don't set about time, but we bring her up when when an opportunity arises and Ivy does too. Ivy does too. Yeah, just the other yesterday, I think she was getting ready for school and she was like, Oh mummy, Ivy's tickling my uh Eva's tickling my feet. Because we see, you know, we sometimes say, Oh well, that must be Eva doing that to you, or you know, we just we talk about it. So then Ivy started doing the same thing, which I think's important because it means that she talks I think it's important she talks about it with her, you know, friends as well. So then Ivy has a big sister that's not here anymore. So yeah.

Joshie 35:08

Now, I don't know if the cameras can see this, but you both have tattoos bearing Eva's name. What can you tell me about about the meaning of those tattoos and where you where you got them done?

Alicia 35:20

Um we got them done at Tiny Tats um in Marichador. Shout out to them. And the reason we chose them was we reached out to quite a few different places because the experience was just as important to us as the tattoo itself. Um because it we got them done on the first birthday after Eva passed away, which was her eighth birthday. Um and um so we got, you'll see, a little wave because she loved water. We got um a like a star because she loved lights. She couldn't see very well, but when you had bright lights, she just like lit up because she could see them really well. So we always used to have like parties with glow sticks and things like that to um what that musical instrument because she loved music. We did music for quite a number of years through Hummingbird House and she absolutely loved it. Um and just a heart because I guess like eagle was eagle was all about her heart. She just she did everything with her heart, didn't she? So yes, so that was really special actually. Um yeah.

Dan 36:23

And we had them had them touched up uh a year later as well on her ninth birthday. Uh which was uh again, we were in Brisbane at the time, so we drove up to Mritchidor. And uh but yeah, it was just a lovely experience. The first time we met, I can't remember her name.

Alicia 36:39

Shine.

Dan 36:40

Sinee. The first time we met her, she literally opened the door and just gave us a big hug.

Alicia 36:45

Yeah.

Dan 36:45

It was just amazing.

Alicia 36:47

Yeah, and she helped us design them when we told her about Eva, and she was just like she she was honoured and grateful to do this for us given what we were going through, and that meant something like that she recognized that it was a big thing was like so yeah, beautiful.

Joshie 37:02

Yeah,

Running With Eva Beside Them

Joshie 37:03

correct me if I'm wrong, but there's a particular run, there was an event that you I think can only attribute to Eva's presence having got you, I think her PB, was it a 10k PB?

Alicia 37:15

Yeah, well, I guess um so Eva passed away in July 2023. Two weeks later I ran the Jetty to Jetty, which wasn't the PB. But it was very hard for me to to go and do that, but I didn't. And um, I think I I had probably what I would say was a mini panic attack during it because um I say to people is the feeling of grief is really similar to the feeling of like running, like when you're when you're out of your breath, out of breath.

Dan 37:41

Yeah. Right.

Alicia 37:42

So I remember like being towards the end of that run and feeling that and then not being able to kind of separate that from the grief. So that happened. And then a year later, I went back to Jetty to Jetty and ran that run again. I'd had some injuries leading up to that. Um, and I'd and I'd kind of just went, oh, I'm not gonna get what I wanted, but I'm just gonna go out and do it. And it was one of those runs where you just feel amazing from the very first step all the way up to the very end. Um and I, yeah, I got a PB which I'd set 10 years earlier. Wow. Yeah. So I must have been yeah, 37 at time and I'd set my PB at 27. So that's really um and I just felt amazing the whole time. And I just and I just feel like Eva must have been there helping me along that day. Um, you know, given it was yeah, where I'd been just after she passed away. It just felt it just felt like she must have been there helping me along because I don't know how I would have done it otherwise. I remember running past John, um our training coach in the last like 500 metres, going, I've got a bitch. And everyone was just laughing at me, but it was so good, even in that last 500 metres.

Joshie 38:54

So we were able to actually enjoy the that moment.

Alicia 38:57

I think it was such an enjoyable run that you were also like running really hard in.

Joshie 39:01

Like it's that's almost unheard of. To be able to almost like to celebrate that achievement whilst almost unheard of. What about Dan for yourself? Like, um, I I know that I mean you you both still run, you both still love running events. Probably you're not quite as into the running at the moment.

Dan 39:20

At the moment, I'm not what you'd call a runner, but I do run occasionally.

Joshie 39:25

He runs a hockey every week, might you? And is like, do you ever consciously draw on Eva's presence for inspiration?

Dan 39:32

Yeah, I r I really do. Yeah. Um yeah, for for when I was training for the half marathon last year, um, when we got to the bigger runs, I was wearing my Shime for Eva shirt.

Alicia 39:44

Yeah, yeah.

Dan 39:45

Deliberately. That's right. Yeah. You ran incredibly well that day.

Joshie 39:49

Yeah, yeah, yeah. Yep, yeah. And you were underdone. Like physically, you you you know, I mean you you've done a little bit of training, but uh, I was training reasonably well for that one.

Alicia 39:59

You were still one run away.

Dan 40:02

Anyway, I was also doing two hockey trainings and a game each week as well. So there was a lot of running happening. Uh, but one long run. Yes. Uh and each, you know, it just kept expanding to get bigger and bigger.

Alicia 40:14

And he did amazing.

Dan 40:15

Yeah, it was a good run. It was I enjoyed that one. That was a really good one. Um, felt amazing uh the whole way through. Yeah, uh, definitely Drew and Eva the whole time. Yeah.

Joshie 40:26

So I'll ask this question to you each individually. Um, maybe start with yourself, Dan, given that you've got the microphone close. What's your favorite memory of Eva? Goodness. Sorry to put you on the spot. Um, okay. Um I reckon it's gonna be hard.

Dan 40:51

When Ivy was young, she was um crying on the bed and Eva roll rolled over and cuddled her and it was just beautiful.

Joshie 41:04

That's probably my favorite one. Sorry. I can't I can't choose just one, yeah.

Alicia 41:14

Honestly, like I just feel like um Yeah, I mean, I guess collectively, probably just that memory of us going to New Zealand on that road trip was probably for me because um obviously Eva's health was up and down, but there were two years basically when she was um two and three, where she was at her happiest and healthiest. Um she was, you know, being fed by Chew by then, which was life changing changing for us. Um and for her. And for her. And she was was well and she was just so happy the whole time. And she knew we were going on holidays, didn't she?

Dan 41:48

Like she Well, she had both of us the whole time.

Alicia 41:51

Yeah, but even when we were packing and like we were driving, and like she just you could tell, like her she her spirit just lifted straight away because she knew I've got mummy and daddy all to myself, I don't have to work for like two whole weeks. Like you could just tell that she could tell. Yeah, and then that holiday that um obviously the hot springs made her um feel good because she had tractures all through her body. So warm water was really, really um comforting and good for her. So um that's obviously why we went on that holiday. Um she was just happy and got these awesome photos of her, like you know, she's been in a hot spring, so her hair's all like sticking up out of her head and like funny photos. Um yeah, so that's probably my best kind of collective memories.

Dan 42:37

Uh that holiday was um gifted to us from a business here actually on South Shore Realty in just north of Merrichidor. Yeah. Did you know that they were that we didn't they were a friend of a family member?

Alicia 42:53

Yeah. Uh and um they they found out about our story and they um organized that. And then one of my work clients at the time, actually, she was a travel agent and she organized the whole holiday for us. So she found all of the um hotels that we stayed in and all the hot springs and like organized the whole thing for us too, which was amazing, wasn't it? We like honestly, it just demonstrates how much that we had over those years, and sometimes you can kind of forget about those things, but we yeah, we got a lot of help and support.

Joshie 43:24

Yeah. Yeah. Well Lucia and Dan, um, thank you so much for sharing your journey with me today, and thank you for trusting me with sharing Eva's journey and of course your life story. Um I know that you absolutely love talking about Eva's life, but I also know that having a conversation like this isn't always easy. So sincerely, thank you very much. Thanks, Josh. If today's conversation has resonated with you, or there's someone in your life who you think would appreciate hearing it, we'd love for you to share this episode with them. Next week on Run Believable, we explore what it feels like when the body is no longer able to take us any further up the mountain, and the only thing we have left in our control is our mindset.

Emma 44:08

Because I ran before I had kids and then wanted to run after having kids, your body's very different. It was a real challenge for me to claim it back in a positive way because it was caught up, I think, in what would others be thinking of me.

Dan 44:35

That'll be the end, that'll be the last little closing thing got your goodness.