Episode 2 | Riding rollercoasters and harbouring hope | Joe Darcy’s story

Episode 2  | Riding rollercoasters and harbouring hope | Joe Darcy's story
Posted on Wed 15 Sep 2021

In the first hours and days of baby Eve’s life, her parents Joe and Hiam heard the toughest news and words every new parent dreads: complications, NICU, brain damage... Through all the ups and downs of those rollercoaster days, Joe never gave up hope and baby Eve is now a skateboarding six year old who’s defied all the medical odds.

In the first hours and days of baby Eve’s life, her parents Joe and Hiam heard the toughest news and words every new parent dreads: complications, NICU, brain damage... Through all the ups and downs of those rollercoaster days, Joe never gave up hope and baby Eve is now a skateboarding six year old who’s defied all the medical odds. Joe shares his memories of Eve’s first days, how he kept hope alive, and how trusting your gut can make a truly life-changing difference.

Find out more about the incredible work by CPA’s research team

Sign the Window of Opportunity petition for national screening of CP

Watch Joe’s video story about Eve 

Find out about Dr Hayley Smithers-Sheedy and her team’s work on preventing CMV in pregnancy

Find out about Dr Cathy Morgan and her team’s work on early detection of CP

 

Episode Transcript

Ben McAlary: Hello and welcome to Cerebral Conversations. My name is Ben McAlary,

Andy McLean: and I'm Andy McLean, and in this episode, you're going to hear the story of Eve Darcy and the amazing work that's being done regarding the early detection of cerebral palsy.

Ben McAlary: Last week, you heard from Professor Nadia Badawi, who is mentioned in today's episode. So you'll hear how the link happens between what Nadia has done and the many years of research that she's done regarding early intervention. And then how that is actually played out in a practical sense, through the remarkable story of Eve Darcy.

Andy McLean: Yeah, it's mind blowing stuff. So we're going to talk to Eve's dad Joe. Now, Eve was born six weeks via emergency C-section and was later and quite quickly diagnosed with mild cerebral palsy.

Ben McAlary: But it was almost the journey to get there, which is possibly the most astounding birth story I've ever heard in my life. As dads, Andy, I could really empathise with the roller coaster of emotions that Joe went through in those early days.

Andy McLean: Oh, my gosh. Yeah. And Ben and I, as the producers of the podcast, have had the privilege of editing this episode, which means we've heard it several times over. And I have to say hand on heart, Ben, every single time I hear Joe talking about this, I get the hairs on the back of my neck standing up, and the United States in the eyes start to well up. It's just it's just mind blowing, isn't it?

Ben McAlary: It is. It's an extraordinary story. And we're really happy to share it with you today. Get out the Kleenex handy, because I think we're going to need it. We hope you enjoyed this episode. Joe, wonderful to catch up with you today. Thanks for coming in.

Joe Darcy: Hey, how you doing, guys? How are you?

Ben McAlary: Very, very well. Joe, I want to take you back seven years. And I want you to talk us through those first couple of hours of Eve's life.

Joe Darcy: Yeah. Seven years ago, it's a long time to remember trying to remember some stuff, but when the first the first few hours, I do have vivid memories of stuff that happened when my wife was nearly at full term to to have the baby, and she just didn't feel right. On the morning she woke up and we decided to go get a scan. And on the basis of that scan, they sent us straight to the hospital to say, look, there's something not right with the baby and we went in for emergency C-section. And yeah, we got to the hospital and the crew are waiting outside with the bed and all the nurses. And we just put her on the table and wheeled her into to operate. And and the surgeon said, look, I'll have the baby at about 10, 12 minutes. We'll have the baby out. Don't worry, everything's going to be fine. And then. I was put in a little room on my own, and then I could see there's a clock on the wall and I said, look. Ten minutes came and went and 15 minutes came and went and there was nothing. Couldn't hear her cry or anything so. So something's not right. And I only probably just thought of that. And somebody came in and said, yeah, look, we we we've lost. We've lost her. And I actually thought it was my wife at the time thinking something happened to her because we didn't know it was a, we didn't know it was a girl. And they said no. Yeah. Your daughter's had complications. And there was another nurse came in to kind of comfort me and that particular doctor had left. But then I think about 10 or 15 minutes later, she came back in and said, look, we have a heartbeat. We're going to keep trying and keep keep pumping her full of blood and adrenaline to to keep her going. And I remember that we that we got out of the room some at some point. It was it was only maybe six or seven hours later that I have a memory that I remember going down to see my daughter Eve and wired all up to the machines and stuff. I'm ready for I think they're going to transport her down to Canberra because there was no beds in Sydney. And yeah, we got to see her anyway. And my wife was rolled in in her bed. And then we waited for our son to come from home to to have a look, because, as I said, they were going to transport her down to Canberra. And within that timeframe of waiting that half extra half an hour, a bed became free in the hospital. And then that journey started and being put into the NICU, the intensive care ward and  that's the first few hours are really this. I don't remember much being honest with you. I don't that that's the base of the story until I woke up the next day. And then I could see her in the ward, and the machines and keeping her alive and stuff.

Andy McLean: Just to set the scene there then so the pregnancy had been straightforward all the way up until the day of the birth.

Joe Darcy: Perfect. Everything was fine up to about thirty six weeks and textbook pregnancy as far as the doctors were concerned. And. My wife just didn't feel right that morning when she woke up, she said, there's something I don't feel good, I feel drained, I feel something. I said, well, when do you want to book a scan, just a local one, because she was due to see the doctor next day anyway. And just fortunate we were able to get one. And at that time and then. Yeah, and then we were there was no news, actually. We didn't know anything until we got to the hospital. They just said, you got to get to the hospital now. Doctor rang us on the way and said, look, we're going to have to do an emergency section because something's not right. But don't worry, you know. And so, yeah, other than that everything was perfect. I think up to that point. And if we hadn't of if we got a scan like a half an hour later or earlier, you wouldn't have known the doctor who did all the research. You'd never have known. It was just our timing that for whatever reason, just came came good, because a half an hour later, we would have she would'nt have been born at all or she would have been stillborn and probably half an hour before that process hadn't started. Of where the blood had flowed out into mum you know.

Andy McLean: So you've talked us through the first few hours of his life there, and you woke up the next morning. Tell us about the next few days and perhaps the next couple of weeks. Like what was that like? What happened next?

Joe Darcy: Yeah, the next the next morning we got to we got to see her and in the main ICU unit, and that was where we stayed for those three, three weeks anyway. So every day was nearly the same after that. But the first few hours, obviously, of seeing her, the specialist came down and told us, you know, what was what had happened and what they didn't exactly know 100 percent of what had happened, but that she was very sick. She had no blood left in her system, lack of oxygen to the brain for 20 minutes. So all these statistics came out very kind of rigid statistics, you know, numbers and stats. And all they can do is we wait and see. We're going to get an MRI and a couple of days, we've cooled the brain down. They were doing brain cooling at the time.

Andy McLean: And in those moments, sometimes you have to some very confronting conversations and medical professionals do, too.

Joe Darcy: That's right. Time-frame, I don't know when that happened, would have been after her first MRI when it showed a global brain damage. So possibly just after that, when the results came in, we got into a room with 10 or 12 other doctors and nurses and specialists, and each of them went around the scan about the MRI, about to eat the EKG's and all that sort of stuff that they had done before. And yeah, they said, look, it's unfortunately not good, because the brain it's global brain damage and that the the one percent chance that she has of survival would be the quality of life just wouldn't be there. And they kind of gave us a a choice whether to just keep on the road we 're going to leave her on life support. And that just would kind of see what happens. So, yeah, it was it was a horrible few minutes, a horrible half an hour for maybe an hour. We just we just went away and had a look at what these things that's going to happen. And we were devastated, absolutely devastated. I mean, just got to a point where we were walking outside the hospital on the grounds, and I said, I can turn off the machine. I just can't do it. I really my wife said we could do this and we can do this. And I said, I can't I just my mind. I won't be able to do it. And but what what happens if we have this, the worst case scenario. And I said , well, look, she's my little girl. I'm just going to have to look after. I'm going to that's my job and I'm going to make sure I'll do the best for her. And we got back in the room and kind of they're all waiting there and waiting for that answer. And I said, look, I can't, I can't turn off the machine. Right now, we need more time. And I know the outcome may never change. But I'm going to do the very best as a dad to look after her, you know, and and care for her. And my wife, actually couldn't say a word. She was absolutely devastated. But I knew that doctors had to hear some words. And that's that was the words that I that I could say to them and say, look, that that's it. And they were happy with the decision. They said, that's yours. And let's let's let's move forward with whatever treatment we can and keep her comfortable. And X, Y, Z, you know.

Ben McAlary: Paint the picture now that you've gone in, you've made the decision, you've made the decision to not, you know, turn off the machines. Can you can you remember and I understand that, you know, days blur into weeks, weeks into months. But how what what was the next sort of step there?

Joe Darcy: We, I think we asked for a couple more tests maybe and a second or third, maybe MRI just to see, because they were just a snapshot of the brain at that particular time. And I'm hoping, you know, something might have changed. So I think we got three. And I think on the third one, we got two or we got three. But on whatever one it was, we we it was no different to the one that had been before. So we said, OK, well, then we are on that pathway now where we will have to turn off the machine in a few days, you know. And that's what the doctors had said at the time, look. But in your own time and I said, look, my my my parents want to come out from Ireland to for the funeral. Would that be OK? You know, can we hold out those two or three days as it takes a long time to get here? And they said no problem. They put us into a room on our own, a separate room and decorated with Frozen. The movie Frozen was out or something. And Anna and Elsa were everywhere and all over the room. And they made it as beautiful, with music and the nurses were amazing just to give us that and support and love from them. You could feel it as soon as you walked into the room. It was like a baby's room, nearly more so than in a hospital room. It was like as if as if Even had gone home. So I think we had met possibly a week to go or maybe four or five days. And my parents were on the way. And then they said, look, we're going to do it at this particular time. Three o'clock, I think it was on the third, I think. I'm sorry. My dates are all wrong. But anyway, we had a set time to to to say goodbye. They sent a beautiful woman in called Alex. She came in and took the last photos of us, last photos of Eve, and little heartfelt photography company, or something that she volunteers for. And she came in and I took the last few photos and pictures of Eve in the crib and then and then eventually they turned off the machine and they handed Eve over to us . And me and my wife sat together and our son was there. And this lovely woman, Alex, was just taken the last few photos of her. And that's what kind of she does for the stillborn babies. And she loves that sort of connection with families. But anyway, she left the room and we had decided it was time to say goodbye. And the funeral was plan of parents were on the way. And there was nothing really else to do but to kind of enjoy her with out the pipes and the cables and all these sort of things. We had all the all the everything was was put away. And we just held her as know as you would if it was a baby. You know, just born and having that little, you know, this little thing in your arms and we all got to hold her and it's heartbreaking, as devastating as as as, you know, what the outcome is going to be, because this is what they've predicted. You know, it's very. Yes, very hard, hard to to comprehend that, you know, you're not leaving and you're not going outside the door in a little pram to take your home, you know?

Andy McLean: So, Joe, the family's all together. You know, you've got Eve in your arms. What happened next?

Joe Darcy: Yeah, it was it was quite, quite difficult to kind of get your head around that your lying with this little this little baby here and waiting for her to slip away because they had said it'll take a bit of time for the lungs to saturate or something like that, that she would just stop breathing because the brainstem couldn't tell the lungs to work. That's what I was got in layman's terms , the information. But we kind of didn't recognise, I don't know how long we were there. It seemed like a probably an hour or two hours. I don't know. But. After a while, a doctor, doctors were coming in and out and oh. You can see in the look on their face like, oh, she's still here. You know, that type of thing. And then one particular doctor came in and he said he just came over and checked her. And then he put a glove on, on his hand and then just put his finger in her mouth and she started sucking on his finger. And he was OK. This just this isn't right. That shouldn't be happening. This, I don't know. And we've got to get her some food. I don't think the doctors knew that because they knew what was happening. You probably never saw that before, that you're on the end of end of life. And next of all, it's all she's doing w hat we were told couldn't be done. And so now the lungs are working and the brainstem is telling the lungs to work. Now we've to get her some food and and try and come out of this sort of this kind of fog that we're in of letting her go. Next of all, it's. Oh, well, she probably going to be all right. Oh. So that's an amazing rollercoaster to be on to tell her that. One minute you're saying your goodbyes, the next minute you're celebrating that she's she's still here. And then the next day and the next day, it's just it's just a blur. And after that, how it all came came from that, you know, that one little moment.

Ben McAlary: Can you remember when you finally took Eve home and what that was like?

Joe Darcy: Yeah, it was quite weird because we had that whole day of waiting to say goodbye and the whole build up of the last photographs, and I knew my parents were on the flight or just about to land, and we planned the funeral. We were going to have spread her ashes over Pittwater and the beautiful water water feature here in North Sydney. And so we had all these these these think this these are the next stages of what was going to happen the next day and the next day. And then you're told, OK, she's no, she's actually awake and she can breathe for herself. I think the next day they got a hearing test and a sight test and she could see and she could hear. And we were like, this is they were calling it a mircle , like whatever miracles are. But a living miracle is that this is what the nurses are calling her, Miracle Eve. And it was like, yeah, it was so, so crazy. You're having these dark, dark moments and next of all, well, she's going to be OK. And you think how do you how do you how do you come out of that? Four days later, we were home. Like, how do you come out like on a Monday and then on Thursday, your home and your own house in in and your mum and dad are now there. And they're you know, we've got balloons everywhere in the house. It was a very weird moment.

Ben McAlary: Such a traumatic experience for such a long time, Joe. I mean, you think about those early days and then days turned into weeks. Where does the strength come from? Where where what did you rely on most during those those sort of early days and weeks?

Joe Darcy: And initially, when they had come in and said, look, we had lost her, I had that 15 minutes to think about that and then I didn't. When they came back and said, oh, look, we're going to keep working, everything from that point on for me was a bonus that I didn't have to tell my wife when she woke up that we had a girl. First of all, her name would have been Eve and she didn't make it, you know, so when they said, look, she's alive, we have her on the machine. I you know, I could I could get through get through something with my wife to see her. And then and everything from it was a bonus. You know, even though the MRI came back negative and all your tests. But the fact that I got to hang out with her every day for as long as that was going to be time was very we knew time was going to be limited. That was that kind of kept me going because after about was coming up to my birthday. So she was born on the 4th and my birthday's on the 7th. So it was a few days later. And they were. For my birthday presents, the nurses allowed me to have her on my chest and this little kangaroo cuddles, I learned what they were called later on and they were able to get all the wires and all the pipes around me. And I was wrapped up in all this stuff. And she was, they were able to give me this little thing. I was able to just have her on my chest like like a normal. If you took your baby home from hospital, normally you would be able to do all that stuff. But so I got to hold her. I was the first one to hold her.My wife she is still upset with me because of that, it was my birthday. I'm allowed that, you know, Eve has taken over my birthday since then. My birthday is gone. It's always Eve's birthday week. But yeah, I think having having those little cuddles, I had her probably two or three hours on me and I knew that that was going to happen every day. So they said, look, we can do it again tomorrow. And if that if that's what you want. So I knew every day I was able to hold her and then my wife. So I'm talking five, six, seven hours. We were, I would just sing to her and talk to her and read to her. And she was just there on me the whole time. And then my wife would come in and she takes she'd be sitting in a different chair and she'd come over and we'd swap over. And I think that bond or love or strength from her, I think this poor little thing that I felt so helpless for was able to give me such love and joy that she didn't even realise at the time. You know, even if even though it was the worst case and worst case, you know, you were still able to find something of, if that's all I got, you know? Just just to hold there for the next day or the next day until we turn off the machine. He had the strength. You just find it. I think you just find it no matter what your when you're parents You know, whether it's the first time, you've got three or four kids, whatever you that that instinct just comes naturally, I think, to most people and to protective instinct to to to do whatever you can to help your children or help yourself or help your partner, whatever it is to to get through it.

Andy McLean: I have to say, speaking as a father. As soon as you talked about those kangaroo cuddles , I was like, oh, yeah, like as soon as you said that, I just I was just like, yeah, of course. Whether you hadn't there wasn't a decision to make, was there, because as soon as you have that, like that's enough.

Ben McAlary: That is enough is just it is everything. Because my daughter was in NIC unit for a period of time, and yeah the memories just came flooding back as I held her before my wife did, you know, and yeah, just having that touch, I also changed the nappy before my wife did. So I got that going for me as well. So, Joe, it's wonderful that Eve survived, but you knew that it would be likely to be some challenges ahead because of the MRIs.

Joe Darcy: You after finding out that the well, having having this in our minds, that she was going to have something wrong with her because of the lack of oxygen to the brain, we obviously start doing research into all the difficulties that children have with brain damage. So and I might go back in time, if I can, for a second, because in that first few days, again, I just overlooked it in the first few days when we heard the word cerebral palsy. My wife had done some was doing the research on it. And she found a woman called Nadia Badawi, who was the head of research for the CPA, and reached out to her on an email and said, look, my daughter's just been born and gave her the whole story. And again, I can't hear the exact words, but basically Nadia was so supportive at that stage to come back and say, look, we hope everything's going to be fine and let us know how everything goes. And. And everything works out. Please get in touch and which and which we did when, you know, we were able to take Eve home, then when she when she woke up, when she got there, you know, in a hospital, we could take her home then. And then in the week, I think later we reached back out to this lovely woman called Nadia. And she was she said, look, we are just starting this research. I think there were only a few months into it where they were doing this early intervention type program. And would we want to be part of it. Do you mind if I come out to the house and have a chat with you guys? So herself and not a lovely lady, Iona Novak, she came out as well and went through what cerebral palsy is and explained it to us and the facilities we have and how amazing people can be, you know, with this injury. So a lot of positivity. There was a downside that if we went and got the, you know, the intervention and we found out very early on that you have a baby now with cerebral palsy, that you kind of lose that parenting, the joy of the joy of having a baby, because now you're in focus of therapies and focus on trying to get her better. So, yeah, I think at the time she was at 15 weeks, I had to take a video of a 15 minute video and then send it off and then wait for the results. Basically, let's see what happens after that. You know, and so when we I think a week or so went by or two weeks, it came back and said, yeah, look, Eve has cerebral palsy. We don't know how mild or how aggressive it's going to be, but we have these things in place. Let's let's get you let's get you on these programs.

Ben McAlary: What kind of cerebral palsy does Eve have?

Joe Darcy: Well, we're very fortunate with that, with the lack of, I think, like 20 minutes or 17 minutes of something, but no blood or no nothing to the brain. She's quite mild and in a sense of that severity and it mostly affects her, her left, the left leg left, left foot, and all our muscle muscles are all tight on that side. And she kind of walks, walks with it, with a kind of off gait, kind of angle. So it's quite,it is, when you look at the brain injury and you look at the whole package of the whole story and you say like, how is this little thing just come out that she's you know, she's she's not as severe as you thought initially. But I do believe yeah, I look, looking back now, seven years, seven years on, you see what she's able to do now. But back then, you put it down to all the therapies that were in place to get her to that point, you know. So, yes, she is mild in the in the legs and obviously the brain, she probably, you know, six to eight, maybe 10 months behind the normal seven year old in cognitive cognitive side. But it's still to us, it's still still mild. You know.

Ben McAlary: So, just going back to that early diagnosis that you received. So how did that make you feel? I know you said that it's almost like a double edged sword, but how important do you think it was for Eve to have that early diagnosis?

Joe Darcy: Yeah, we always go back to we always think back to if if that wasn't there, if we didn't get that early diagnosis what what would she be like now, but what would have happened if it was a year later or I think at the time we were told that most children who might have cerebral palsy or have had injuries at birth, they don't usually find out for a year, maybe 14, 15 months, maybe up to two years of age. They haven't reached milestones. Normal kids are reaching. So we were quite shocked at that. And to have have this system in place where you had an idea of. Yes, she has it, but we're going to work on it. We're going to keep this is what we're going to do. It was an absolute gift. It was just an absolute gift we were able to focus on on the needs where she was at that particular time. So 20 weeks in, OK, we couldn't really do much, but hydrotherapy was there. And the music we did some music therapy and an early intervention that way. And then that led to, well, she's getting stronger and then physio's need ed now. And then she was oh, she's saying a few words and then speech and then occupational therapy. And then there was massage therapy. And it was so there was six or seven things every week on that stage to to keep her going. I don't, sorry. I do believe that there's no way I look at her doing all her stuff that she does now every week, that if if we didn't have that early diagnosis, you didn't have the intervention or even the planning or in your for as a dad, even as you're planning it, is it's an unknown journey. And you've someone there are a team of people we had for four or five people around us. This is what we're going to do. This is the plan. This is where she is now in six months, eight months, ten months, all the way through to two, three, four. We had a plan and having all those strategies and help and the knowledge. There's no way Eve would be where she is today. Absolutely. Without them. Without that, that starts the amazing start in life she got.

Andy McLean: Eve's now seven years old, is that right?

Joe Darcy: That's right. She's, it's the total opposite of where we had come from. It's a total opposite of four weeks later. We're walking out of the hospital with this little baby heading home to my to my dad who's in a black suit for the whole week thinking he's going to a funeral. And and he has all the balloons and ribbons all over the house as we get in. And my mum had my favorite shepherd's pie made for me. And so the contrast of that particular day, getting home to seven years later and in her basic, her average week, she's got her nippers on, which is the life saving thing on a Saturday. She's got swimming on a Sunday. She's also got soccer on a Saturday. She does karate on a Thursday, tennis on a Tuesday. She plays drums every day with dad , music mad, you know, on a skateboard in the skate park, on her bike, in the skate park, scooter, netball and basketball. So I've got to bring all these things in the van. And she's just all over these sports. Every day she wakes up and there's no word of a lie . Two things happen every morning. She wakes up the first one, or second one, it depends, is there sports today? That's every day, she asks that is sports on today in school. And where's mom? So I'm the dad. And I've been caring for her for seven years, seven days a week. She still asks where mom is, and she would go to mom every morning as if she hadn't seen mom for years. Exactly the same, hugs, kisses, doesn't come near me on my side of the bed. Goes straight over to mom and just it's the total opposite of me. She doesn't want to know me, even though she knows I'm with her every day. Most of the days anyway. So the contrast is amazing. If you look at there's days and this is the absolute truth. I'm at the skate park and as I said, I have to bring the net ball, the basketball, the bike, the scooter and the skateboard. She will not leave the house until all those things are in the van. And then we go out and she's skipping from one to the next, and she just does a whole circuit thing. I'm looking at her there. And you would look at her and you would never know if you didn't know know her. You'd never know she had cerebral palsy. You would just think she's a normal child in a normal playground, doing normal things with with everyone else. You look closely and you see her legs and the way she's kind of moving. If you look really closely, you'll see that. Yeah, she's not something not right. But so those moments are just magic to me. And I've never taken anything for granted.

Ben McAlary: There's obviously no doubting that Eve is where she is because of how proactive you guys were, particularly in the early days, seeking out, you know, expert advice from Doctor Nadia.

Andy McLean: I'm glad to say that we're going to do a follow up episode with Nadia where we get to hear her side of the story on that. So so listen out for that soon.

Ben McAlary: Other than being really proactive in your communication and wanting to find more information, what other advice would you have for for parents who may be going through something similar?

Joe Darcy: The advice would be yes, to to look and to look for the help and ask questions and reach out to those people who are the specialists in the field to to get the best help or the best map anyway of where you might want to be in a few years time. Yeah, seek out the advice, seek out the help. But at the same time, like, yeah, understand that it is a massive emotional journey, not just a physical from, from a cerebral palsy point of view where it can be a physical journey. You just need to listen to yourself and. Not so much having faith, but it's like to believe that things can change. You can you can have the worst, absolute worst case scenario and things can work out and have amazing outcomes.

Ben McAlary: So other than the Paralympics in 2034, what's next for Eve? What's next for Eve? What's your dreams and hopes for Eve?

Joe Darcy: Wow. School, school at the moment is probably the biggest challenge we're having at the school. She's in a mainstream school, which is fantastic. She has an amazing group of friends and she's so looked after and spoiled in the classroom from teachers and assistant teachers and all that to help we get from the school. So the main focus of the moment is actually funny enough, not a physical, physical side, which is where it all began to the physicality might not be there to to do what a normal child does in in their in their life. But yeah, getting her more motivated in school and. Is the main challenge at the moment and the main focus of what we're doing now, because down yeah, down the road, OK, I want I'd love her to go to to go to High School and, you know, go to university and or whatever, like the the I think everybody wants that for the kids. You know, you both are dads, you know, you want the best for them. And you can see this journey that they are going to go on and hopefully not make the same mistakes you guys are. We all make at some point of roadways, but pathways to take. But yeah, I. Apart from the Paralympics, I mean, I think she's still going to go the sport, I mean, she's just going to be sport mad. You know, I would. Yeah. One of my proudest moments, I think would be. And it's very personal, because I have a mountain bike, as you know, is to go mountain biking with her someday, you know. I've got to get our training wheels off the bike for us at the moment. She screams all the time when I take one off, you know. But she she gets there. She'll get there eventually. So I think down the road to be to come down a mountain with her on a on a bike, that's kind of my biggest, selfishly, selfish goal. But, you know, that's what I'm going to be aiming for when she's actually a little older, you know. My mom always said, God rest her. You know, my mom said that few weeks they stayed around for five weeks, you know, to to help us out with Eve and that initial initial just the start of the journey. And I remember am. Oh, yeah, she's she's going to be made she's she's destined for great things. She's she's you know, my granddaughter, you know, of course, she's very proud. And even though she's got about 20 granddaughters and grandchildren at home, it was Eve, you know, and this is the Australian grandchild, you know. Anyway, she said, well, what what where's the name come from? So that that's er twenty years ago, since I met my wife, that Eve was always going to be the name of of of a baby if it's going to be a girl. Oh, no. But where does it come from? I said, I think it's Adam and Eve or the Bible or something like that. Oh, no. Let me check on my new phone that my favorite son had just bought her because I'm the favourite one. Not really. But she she looks it up on the phone. She goes, Oh, Eve it means life or living. And I just burst and balled. I absolutely buckled. I couldn't believe a name of all the things she'd been through from the start. And this name meant life or living. I was like, it blew me away. And I still think about that when I see her running around on the beach or nippers trying to dive into the surf or on our bodyboard and the beach. And she started to life or live. You know, she's she's full of that. She's absolutely full of life. And I'm so, so happy. You know, we've come to this point in our life, you know.

Ben McAlary: So, Joe, from two dads to another, I just want to honour you for your courage, commitment and just love for your family. It's, it's been a real pleasure to talk to you today.

Joe Darcy: Thank you. Very nice to say. Thanks very much. Thank you. Thanks, guys. Thanks very much.

Ben McAlary: You've been listening to Cerebrally Conversations, a podcast produced by Cerebral Palsy Alliance.

Andy McLean: To learn more, check out the show notes to this episode over at Cerebral Palsy dot org, a new forward slash cerebral conversations.

Ben McAlary: And if you enjoyed the show, please rate or review on your favorite podcast platform.

Andy McLean: And to join the conversation, follow us on Facebook and Instagram.

Ben McAlary: Thanks again for listening.

 The music for this podcast was kindly supplied by Ocean Alley. Check out the band's music on Bandcamp or visit OceanAlley.com. au.

 

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