Latest / Two Doting Dads with Matty J & Ash / #238 Jackson Wray: The Dad Every Parent Can Learn From

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#238 Jackson Wray: The Dad Every Parent Can Learn From · Two Doting Dads with Matty J & Ash

• 0:15
  Speaker 1: Hash.
• 0:16
  Speaker 2: This may surprise you.
• 0:17
  Speaker 3: Nothing surprises me.
• 0:18
  Speaker 2: But I scroll on social media quite a bit.
• 0:22
  Speaker 3: I can hear that thumb clicking.
• 0:24
  Speaker 2: Do you know what I clocked up? Guse how many
• 0:25
  Speaker 2: hours I had listen ready. There was one night recently
• 0:29
  Speaker 2: I was scrolling as I often do as I unwind
• 0:32
  Speaker 2: after the kids are gone to bed and I've had
• 0:34
  Speaker 2: my dinner in the kitchen is clean for the record,
• 0:36
  Speaker 2: and I came across a video where I was like,
• 0:39
  Speaker 2: holy shit, it brought me to tears.
• 0:42
  Speaker 3: Unexpectedly those ones don't.
• 0:43
  Speaker 2: I Like, one second I was watching someone mow the
• 0:45
  Speaker 2: lawn as before and after, and the next thing, I
• 0:49
  Speaker 2: was watching the most beautiful moment of a dad, Jackson Ray,
• 0:52
  Speaker 2: who was just waking up his daughter who was getting
• 0:55
  Speaker 2: up from a nap, and she was just so ecstatic
• 0:59
  Speaker 2: that herd was in the room. And what made it
• 1:02
  Speaker 2: even more special is the fact that their daughter, Frankie,
• 1:05
  Speaker 2: has a number of health issues, including cerebral palsy, she
• 1:08
  Speaker 2: is blind, and she also has epilepsy.
• 1:10
  Speaker 3: Yes, Matt, it's a lot to take on.
• 1:12
  Speaker 4: But her dad, Jackson, who is our guest today, he
• 1:14
  Speaker 4: uses positivity about their situation.
• 1:17
  Speaker 2: For me, it's so important sometimes to hear other parents'
• 1:22
  Speaker 2: situations because it's so important for me to have perspective
• 1:25
  Speaker 2: on my parenting journey. There are so many little minor
• 1:28
  Speaker 2: frustrations that I have each day that I'm like, oh,
• 1:31
  Speaker 2: this is so hard. But when you talk to Jackson
• 1:34
  Speaker 2: and you start to understand what parenting looks like for
• 1:37
  Speaker 2: himself and his wife Alex, it is so inspiring to
• 1:40
  Speaker 2: look at how they tackle parenting and their outlook on
• 1:43
  Speaker 2: it as well.
• 1:43
  Speaker 4: You can't help a smile, Matt when you see those
• 1:45
  Speaker 4: videos pop up and having Jackson in here. He is
• 1:47
  Speaker 4: such a legend. So please enjoy this episode.
• 1:50
  Speaker 2: And look, it does get a little bit emotional at time,
• 1:52
  Speaker 2: so my advice is that you have some tissues on hand,
• 1:55
  Speaker 2: let's get into it. Welcome back to three Doting Dads.
• 1:59
  Speaker 2: I am Mattie Ja, I'm Ash, and I'm Jackson Ray
• 2:01
  Speaker 2: and this is a podcast all about parenting. It is
• 2:04
  Speaker 2: the good, it is the bad and the relatable. And
• 2:07
  Speaker 2: of course we have to say no advice will be
• 2:09
  Speaker 2: given by Ash and myself Jackson. However, loophole you can.
• 2:13
  Speaker 2: You are allowed to give advice. Thank you.
• 2:15
  Speaker 1: I'm glad I got your blessing.
• 2:16
  Speaker 4: We usually start this episode to figure out a little
• 2:18
  Speaker 4: bit about the man.
• 2:19
  Speaker 3: And do you recall the most trouble you got in
• 2:22
  Speaker 3: as a child.
• 2:23
  Speaker 1: I was probably quite a pretty good boy for the
• 2:26
  Speaker 1: majority of my time, but one I don't believe it.
• 2:28
  Speaker 1: I would a single mum good boy. But one time
• 2:32
  Speaker 1: I was on a football tour in New Zealand and
• 2:35
  Speaker 1: I was under age as well.
• 2:36
  Speaker 2: And can I just ask quickly with AFL league or
• 2:39
  Speaker 2: union the union boy Union boys that they love rugby union.
• 2:46
  Speaker 1: Before Johnny Wilkinson kicked those field goals, it was a
• 2:48
  Speaker 1: bit of yeah, it was a bit more fun. But yeah,
• 2:50
  Speaker 1: I was in New Zealand and obviously on a football
• 2:53
  Speaker 1: tour and bought some booze age and a couple of
• 2:57
  Speaker 1: the young fellas took off from the cops.
• 3:00
  Speaker 2: Oh sugar. Yes.
• 3:01
  Speaker 1: So I don't know what I'm meant to be saying
• 3:03
  Speaker 1: this and whether something I'm knocking on the door solicitors,
• 3:06
  Speaker 1: but yeah, it was certainly an experience in a time.
• 3:10
  Speaker 2: Did you have a fake idea or how did you buy?
• 3:13
  Speaker 1: No, I did not have a fake id.
• 3:14
  Speaker 2: Yep, you just looked very old.
• 3:17
  Speaker 1: I just looked old. That type of thing. I kind
• 3:19
  Speaker 1: of look like I do now, because what's your background?
• 3:22
  Speaker 1: My mother's side from Cyprus, in my father's side the
• 3:24
  Speaker 1: strain English.
• 3:25
  Speaker 2: So you've got like a little bit older. I don't
• 3:28
  Speaker 2: want to say it.
• 3:30
  Speaker 3: What are you saying?
• 3:32
  Speaker 1: Wow?
• 3:32
  Speaker 2: You look great for your age is what I'm trying.
• 3:34
  Speaker 3: Wow do I look twenty?
• 3:37
  Speaker 2: Charm, I don't believe anything.
• 3:40
  Speaker 3: What is the legal age in New Zealand it's twelve?
• 3:43
  Speaker 1: I thought, so yeah. Yeah. They were like, you don't
• 3:46
  Speaker 1: need IDA, what are you running cal My memory says
• 3:50
  Speaker 1: I didn't even ask for ID from memory, No you
• 3:52
  Speaker 1: would memory. My recollection is I didn't even get asked.
• 3:54
  Speaker 1: I think that I had one, but I definitely didn't
• 3:56
  Speaker 1: get asked.
• 3:57
  Speaker 2: And then did you get in trouble? Did you run?
• 3:58
  Speaker 2: You stay?
• 3:59
  Speaker 1: I didn't get the run. I bought back off of
• 4:01
  Speaker 1: others and then I went somewhere else and they got
• 4:04
  Speaker 1: caught drinking in the park and they did the run
• 4:06
  Speaker 1: off of the.
• 4:09
  Speaker 2: Also, when you're young, it's one of those things that
• 4:13
  Speaker 2: like if you just stay put and pretend like you're
• 4:15
  Speaker 2: not doing anything naughty, the cops will just walk past
• 4:18
  Speaker 2: or drive by.
• 4:18
  Speaker 3: Most of the time, or they'll just keep it out.
• 4:20
  Speaker 2: But when you run the cops like, well, now we've
• 4:22
  Speaker 2: got to chase.
• 4:22
  Speaker 1: It, it's like you've got a bolt. Yeah, I guess
• 4:26
  Speaker 1: flight or flight, right, So so those boys took off
• 4:28
  Speaker 1: and I got into.
• 4:29
  Speaker 3: A lot of trouble okay from.
• 4:31
  Speaker 1: Mum, dad, who school, school, Luckily not the police. Was
• 4:36
  Speaker 1: they kind of You're on a football tour and obviously
• 4:38
  Speaker 1: someone they're not real cops. You listen, you say what
• 4:40
  Speaker 1: you need to say. Conversation.
• 4:43
  Speaker 3: I wait for that to come back.
• 4:45
  Speaker 1: You're a bit of strife. But so school got me
• 4:48
  Speaker 1: in a bit of strife. Mum got me a bit
• 4:49
  Speaker 1: of strife. But yeah, I think from a I don't
• 4:51
  Speaker 1: know what happened legally from anything about it and little
• 4:54
  Speaker 1: kids at that point. So that was probably the one
• 4:56
  Speaker 1: and only time that I ever really flirted with the law.
• 4:59
  Speaker 1: Let's caught that.
• 5:00
  Speaker 2: Wow, single mom as well, Jackson. What were you doing?
• 5:04
  Speaker 3: Bad? Bad time?
• 5:05
  Speaker 2: Sorry?
• 5:07
  Speaker 1: Mom My mom was there too to probably protect me afterwards,
• 5:09
  Speaker 1: So I think I was all right.
• 5:11
  Speaker 2: How did she pun a shot?
• 5:12
  Speaker 1: I've got a very stern.
• 5:13
  Speaker 3: Talking to that's pretty good. I go heap with a spoon.
• 5:16
  Speaker 1: I had a stepfather who did those types of things.
• 5:18
  Speaker 1: But my mother was very stern to me, but not
• 5:21
  Speaker 1: in a very loving way.
• 5:22
  Speaker 3: Rather than a was she like very stern?
• 5:26
  Speaker 1: Do you think No, I just didn't want to disappoint
• 5:28
  Speaker 1: I think what it was it was more disappointing her,
• 5:30
  Speaker 1: given everything she'd done for me and given to me.
• 5:33
  Speaker 1: So it was more about disappointing her rather than a
• 5:36
  Speaker 1: fear of I guess violence, maybe like a spoon or
• 5:39
  Speaker 1: whatever it may be. So it was a little bit
• 5:41
  Speaker 1: more of that rather than yeah, like you're going to
• 5:43
  Speaker 1: get whacked for that. It was more like, fuck, I've
• 5:45
  Speaker 1: really fucked up and I've my mom's disappointed. And that
• 5:48
  Speaker 1: was probably where I was like, all right, a strife.
• 5:52
  Speaker 2: I always think, how can I get to the point
• 5:55
  Speaker 2: where my kids respect me enough to not want to
• 5:57
  Speaker 2: disappoint me? I said that.
• 5:59
  Speaker 3: Now he's laughing me. I'm like, I'm not angry. It
• 6:03
  Speaker 3: works better. It works better if you are we don't
• 6:06
  Speaker 3: respect you.
• 6:07
  Speaker 1: The disappointed piece is obviously a lot scarier than the
• 6:10
  Speaker 1: than the smack run. I think, yeah, I think so,
• 6:12
  Speaker 1: And I think my mum probably gave me freedom and
• 6:15
  Speaker 1: said like I trust you, and if you fuck the trust,
• 6:17
  Speaker 1: and that's when you're in trouble, rather than going you
• 6:20
  Speaker 1: can't do this, or you must do this, or like
• 6:21
  Speaker 1: a control perspective, and I think that's probably that was instilled.
• 6:26
  Speaker 1: It was like, all right, well I've got the rope
• 6:28
  Speaker 1: and I've dropped myself with the rope to an extent,
• 6:31
  Speaker 1: and that was when I knew. I was like, Ah'm
• 6:32
  Speaker 1: in strife. But I think it's that it's that you
• 6:35
  Speaker 1: give the kid the leeway. I'm here, I'm giving advice
• 6:36
  Speaker 1: already with but it was like, yeah, I think it's given.
• 6:42
  Speaker 1: My mum was always like, I trust you, tell me
• 6:44
  Speaker 1: what you're doing. I'd rather know what's going on, and
• 6:46
  Speaker 1: I'd rather know everything and I won't be as angry
• 6:48
  Speaker 1: as if I find out from someone else. Well, that's
• 6:50
  Speaker 1: when the trust is broken. I think trust is probably
• 6:53
  Speaker 1: the thing that I had with my mum growing up.
• 6:55
  Speaker 3: Yeah, that's good.
• 6:55
  Speaker 2: I'm like locking this in mentally because it sounds so
• 6:58
  Speaker 2: counterintuitive to be like, I will give you the freedom.
• 7:00
  Speaker 3: My kids had fucking exploit that.
• 7:03
  Speaker 1: I think obviously that was as you grow older, right
• 7:05
  Speaker 1: of getting that teenagers. As a little kid, it was
• 7:07
  Speaker 1: probably a little bit different, But my recollections more of
• 7:10
  Speaker 1: my mum as I got into my teenage years and
• 7:12
  Speaker 1: making sure that I didn't disappoint her.
• 7:14
  Speaker 2: Do you remember when, at what point you realize I
• 7:17
  Speaker 2: really want to be a dad have a family.
• 7:19
  Speaker 3: It's a good question.
• 7:20
  Speaker 1: I think I always knew I wanted to be a dad.
• 7:23
  Speaker 1: I just wasn't sure when I was ever going to
• 7:24
  Speaker 1: be ready to be a dad. Growing up, I was
• 7:26
  Speaker 1: always the one of my friend's like, you'd be the
• 7:27
  Speaker 1: best dad, Like that was kind of what I was
• 7:29
  Speaker 1: pumping my way for a little bit, pump away as
• 7:32
  Speaker 1: you're buying alcohol, rub my eg and off we go.
• 7:41
  Speaker 1: But yeah, I think as a kid growing up, you
• 7:43
  Speaker 1: kind of you always that was like the next step
• 7:46
  Speaker 1: in life, and that was a phase in life that
• 7:47
  Speaker 1: you wanted to get to. But I don't think there
• 7:48
  Speaker 1: was ever a moment where I went alright, it's time.
• 7:51
  Speaker 1: I think it was more it just kind of I
• 7:53
  Speaker 1: always knew that that was a path that i'd like
• 7:55
  Speaker 1: to have to have gone down. And then, yeah, obviously
• 7:57
  Speaker 1: it came along like about four and a half fod
• 7:59
  Speaker 1: years ago when with the birth Frankie.
• 8:01
  Speaker 4: Can we just quick step back if you don't mind
• 8:03
  Speaker 4: me asking, Alex your partner.
• 8:04
  Speaker 3: Yeah, where did you guys meet?
• 8:06
  Speaker 1: We worked at Red Bull about twelve thirteen years ago,
• 8:10
  Speaker 1: probably something along a line. We formed a really fast
• 8:12
  Speaker 1: quick friendship, like we were both in part in relationships
• 8:15
  Speaker 1: outside of each other's beforehand, and then we were best
• 8:19
  Speaker 1: of friends for a long time before anything kind of transpired,
• 8:22
  Speaker 1: which I think, given our story, is probably really fitting.
• 8:25
  Speaker 1: The friendship is probably the foundation for what we have today,
• 8:29
  Speaker 1: given the trials that we've been kind of put under
• 8:32
  Speaker 1: with our life, which I'm sure we'll talk about in
• 8:33
  Speaker 1: a little while.
• 8:34
  Speaker 2: Do you remember who raised it first, the prospect of
• 8:37
  Speaker 2: having kids.
• 8:38
  Speaker 1: I can't recall. I think we probably both knew it
• 8:40
  Speaker 1: was a path to go down. I think Alex wanted
• 8:44
  Speaker 1: them a little bit sooner than I did, because body
• 8:47
  Speaker 1: clock women that type of thing. And I was kind
• 8:50
  Speaker 1: of in a position where I'd come out of a job,
• 8:52
  Speaker 1: moved to the US for a little while, came back,
• 8:54
  Speaker 1: started a new career, and so I wasn't in a
• 8:56
  Speaker 1: position financially to go, all right, let's have kids and
• 8:59
  Speaker 1: let's go. I think it was more once I found
• 9:01
  Speaker 1: myself in a little bit of a more stable position,
• 9:03
  Speaker 1: That's when I was like, all right now, it's time.
• 9:06
  Speaker 1: Now I can do it, and now I know that
• 9:07
  Speaker 1: when I'm bringing someone in this world, I can give
• 9:09
  Speaker 1: back as much as they take from me.
• 9:11
  Speaker 2: Yeah. Do you remember how she told you she was pregnant?
• 9:14
  Speaker 1: No, so, yeah, sorry, yes I do. But we tried
• 9:16
  Speaker 1: for a little while to fell pregnant and it didn't happen.
• 9:18
  Speaker 3: I can.
• 9:19
  Speaker 1: We ended up with cats because she was feeling a void,
• 9:21
  Speaker 1: and then we got rid of the cats and that
• 9:23
  Speaker 1: kind of that. I don't want to know how you
• 9:24
  Speaker 1: got rid of the cats.
• 9:25
  Speaker 3: I don't want to know how.
• 9:27
  Speaker 1: I think they're still alive there and there's somebody, some
• 9:29
  Speaker 1: of a very lovely woman took the two cats that
• 9:31
  Speaker 1: we had while we're living apartment living during COVID. But yeah,
• 9:34
  Speaker 1: so we tried for a baby, didn't have it, and
• 9:37
  Speaker 1: then Alex went and had an endometrisis like a laproscopies operation,
• 9:41
  Speaker 1: and then she fell pregnant with the chemical pregnancy that
• 9:46
  Speaker 1: first month after, which was like exciting for a minute,
• 9:48
  Speaker 1: and then obviously that you ride that wave up and down,
• 9:51
  Speaker 1: and then that happened, and then the following month we
• 9:53
  Speaker 1: tried again and she felt pregnant, which was pretty exciting.
• 9:56
  Speaker 2: How did you feel ready?
• 9:57
  Speaker 1: Then, yeah, I certainly felt ready. I think we knew
• 9:59
  Speaker 1: because we had a few attempts that didn't happen, Like obviously,
• 10:03
  Speaker 1: month to month you try and try, no nothing happened,
• 10:05
  Speaker 1: and then we had that month where it happened but
• 10:08
  Speaker 1: didn't happen after the operation and then when she felt pergant.
• 10:11
  Speaker 1: I think we were certainly ready for the baby at
• 10:13
  Speaker 1: that point.
• 10:13
  Speaker 2: And during the journey of Alex being pregnant, all your
• 10:17
  Speaker 2: scans and tests, everything was showing up that things were
• 10:20
  Speaker 2: good or was so no.
• 10:21
  Speaker 1: So good question. We did everything we possibly could, like
• 10:24
  Speaker 1: they give you the test, they asked you if you
• 10:25
  Speaker 1: want to do genetic screening, and all those types of things,
• 10:27
  Speaker 1: and we thought everything went really really well until Alex's
• 10:30
  Speaker 1: waters broke it thirty weeks.
• 10:32
  Speaker 3: That's real early. Yeah.
• 10:34
  Speaker 1: Yeah, so waters broke at thirty weeks, which was pretty
• 10:36
  Speaker 1: scary obviously because it was ten weeks to go. We
• 10:38
  Speaker 1: just finished our birthday class. Alex like perfect, I'm ready
• 10:40
  Speaker 1: to have a baby, and literally that night the water's broke,
• 10:43
  Speaker 1: which was not planned. And then they the doctors wanted
• 10:48
  Speaker 1: to keep the baby or I kept saying the baby,
• 10:50
  Speaker 1: but wanted to keep franking in. So basically Alex was
• 10:53
  Speaker 1: kept in hospital for five days when they basically injected
• 10:56
  Speaker 1: her with steroids for the child to kind of get
• 10:59
  Speaker 1: the lungs to go, because the lungs aren't developed at
• 11:00
  Speaker 1: thirty weeks, and a few other bits and pieces.
• 11:03
  Speaker 2: So were they giving you a time frame of like,
• 11:05
  Speaker 2: we want to try and keep you in here.
• 11:06
  Speaker 1: As long as possible, right, really? But it was really
• 11:09
  Speaker 1: it's a very surreal experience. And I think before I
• 11:11
  Speaker 1: came to see you guys, I was talking to Alex
• 11:13
  Speaker 1: and kind of looking back at like everything that's happened
• 11:16
  Speaker 1: and trying to remember a lot of it because you
• 11:18
  Speaker 1: kind of start to compartmentalize it and go, fuck, I
• 11:21
  Speaker 1: just deal with it later. I'll deal with that later,
• 11:23
  Speaker 1: which I think most people do do.
• 11:25
  Speaker 2: But sometimes with Marley, I'll be talking to someone and
• 11:29
  Speaker 2: with my wife Laura, and she'll say part to the
• 11:32
  Speaker 2: birth that I'm like, did that happen?
• 11:34
  Speaker 1: And she's like, yeah, I remember, you just forget. So
• 11:39
  Speaker 1: we spent three or four days from memory in hospital
• 11:42
  Speaker 1: trying to keet the baby in because her waters were broken,
• 11:44
  Speaker 1: and apparently because as long as Alex was still producing
• 11:46
  Speaker 1: fluid the baby could stay in. And then at I
• 11:49
  Speaker 1: think day five or day six, they sent after the
• 11:52
  Speaker 1: water's broke, they sent us home like you're okay, everything's
• 11:55
  Speaker 1: going to be all right, just stay relaxed and whatever else.
• 11:58
  Speaker 1: And then that night Alex is like, don't feel very good.
• 12:00
  Speaker 1: I think I'm going to go to sleep, And I
• 12:01
  Speaker 1: was like, are you sure you think you might be
• 12:03
  Speaker 1: in labor and she's like no, no, no, I'm okay, I'm okay.
• 12:06
  Speaker 1: So it's probably like eight o'clock and night I was like, no,
• 12:08
  Speaker 1: we're going to go to the hospital. So we get
• 12:10
  Speaker 1: to the hospital and they're like, yeah, you're you're in labor.
• 12:14
  Speaker 1: And we were at We're meant to be delivered at
• 12:16
  Speaker 1: Prince of Well's Hospital, and halfway through labor, they said, oh,
• 12:19
  Speaker 1: your baby's too small. We're going to have to send
• 12:21
  Speaker 1: you to RPA. So in the middle of labor, they
• 12:24
  Speaker 1: put Alex and Frankie, who was obviously still in the stomach,
• 12:28
  Speaker 1: into an ambulance and took off and I had to
• 12:30
  Speaker 1: drive myself to RPA. That like probably like eleven or
• 12:34
  Speaker 1: eleventh thirty at night.
• 12:35
  Speaker 3: Was this in the middle of COVID too.
• 12:36
  Speaker 1: It was. It was April, so kind of COVID had finished,
• 12:39
  Speaker 1: but it was like at the end of that, like
• 12:41
  Speaker 1: everyone was still wearing masks. There was still social distancing.
• 12:44
  Speaker 1: It wasn't full lockdown. But when we got to the hospital,
• 12:47
  Speaker 1: had to do swab tests all that type of stuff.
• 12:49
  Speaker 2: And how are you feeling? Driving separately?
• 12:53
  Speaker 1: Fucking lost ass. I was really like, what the fuck
• 12:56
  Speaker 1: is going on? Like quind of surreal, and some little
• 12:59
  Speaker 1: fuck is on the way to the hospital too, Yeah,
• 13:02
  Speaker 1: these little f anyways, that's that's neither in nor there,
• 13:06
  Speaker 1: but it was just kind of yeah, fucking days really.
• 13:11
  Speaker 1: So we drive, so we get to RPA. Everything's kind
• 13:14
  Speaker 1: of okay, ours dilating and things seem to be going
• 13:19
  Speaker 1: I guess to plan other than the fact that Frankie's
• 13:21
  Speaker 1: are going to be a premium and we kind of
• 13:23
  Speaker 1: accepted that. And then so that night kind of rolls
• 13:26
  Speaker 1: through till about three o'clock in the morning, and at
• 13:30
  Speaker 1: that point I was lying there getting ready. She's dilated
• 13:34
  Speaker 1: and the on call OB hadn't arrived yet. But what
• 13:38
  Speaker 1: happened was she ended up having a card prolapse from
• 13:40
  Speaker 1: what we know, which means effectively that the umbilical cord
• 13:43
  Speaker 1: comes out before Frankie's head. So the umbilical cord obviously
• 13:47
  Speaker 1: is the oxygen supply, and the umbilical cord pushes the
• 13:50
  Speaker 1: head pushed on the oxygen supply, and so we had
• 13:53
  Speaker 1: to have like an like an emergency emergency cesarian. She
• 13:57
  Speaker 1: basically means, and I think I listened to your pod
• 13:58
  Speaker 1: the other day where an emergency if I'm not mistaken
• 14:01
  Speaker 1: from a breach. We didn't even get a minute. Basically,
• 14:04
  Speaker 1: button on the wall, yeah, everyone in.
• 14:07
  Speaker 4: They come out of nowhere too, about of fucking nowhere,
• 14:09
  Speaker 4: but everyone.
• 14:10
  Speaker 2: Like the nurse presses them like.
• 14:13
  Speaker 1: So the ob wasn't there because our ab couldn't deliver
• 14:16
  Speaker 1: because rob wasn't registered at RPA on Coob wasn't there
• 14:19
  Speaker 1: at the time either because they hadn't got there yet.
• 14:21
  Speaker 1: And so there was a registrar on the registrar who
• 14:24
  Speaker 1: was there. The REGISTI doctor was feeling around and then
• 14:26
  Speaker 1: the nurse checked as well, and they caught the nurse's nightmare.
• 14:29
  Speaker 1: So effectively, what happened was the nurse said, pressed the button.
• 14:32
  Speaker 1: They pressed the green button on the wall or the
• 14:34
  Speaker 1: red button or whatever color it is. Everyone rushed in,
• 14:36
  Speaker 1: the nurse pretty much pushed her hand up Alex's vagina,
• 14:40
  Speaker 1: pushed the baby's head back up to get the pressure
• 14:43
  Speaker 1: off the umbilical cord, and then yeah, they're all everyone's
• 14:47
  Speaker 1: in the nurse case ships out. Look at me, Look
• 14:49
  Speaker 1: at me, Look at me. I'm standing like a fucking ghost.
• 14:51
  Speaker 3: I'm going, what.
• 14:52
  Speaker 1: The fuck is going on? Someone tell me what's going on?
• 14:55
  Speaker 1: And then she gets rushed out on all fours, nurse
• 14:59
  Speaker 1: obviously doing what she's doing, and I'm standing in this
• 15:01
  Speaker 1: white room. No one's around, and it's just dead silence,
• 15:04
  Speaker 1: and I'm like, what the fuck is going on?
• 15:06
  Speaker 2: Like where the fuck?
• 15:08
  Speaker 4: They're like a pit crewe they come out of nowhere.
• 15:10
  Speaker 4: And then all of a sudden, I'm like that you're up, you're.
• 15:13
  Speaker 1: Out, and they're all gone.
• 15:14
  Speaker 2: And I think, from what I know, obviously in that moment,
• 15:19
  Speaker 2: Alex is a priority. Yeah, But does anyone tap you
• 15:22
  Speaker 2: on the shoulder and say, hey, just so you know,
• 15:24
  Speaker 2: this is no?
• 15:25
  Speaker 1: And I think because we had that birth in class
• 15:27
  Speaker 1: that morning and they were talking about forcep deliveries and
• 15:30
  Speaker 1: vacuums and all these types of things, and I was like, Oh,
• 15:32
  Speaker 1: they're using forceps and the lady's like, no, honey, and
• 15:35
  Speaker 1: then they just took off, and I was standing in
• 15:36
  Speaker 1: this room by myself, and I'm going like like nobody's around,
• 15:40
  Speaker 1: Like I'm literally in a room probably the same size
• 15:42
  Speaker 1: as this white walls, just standing there going what the
• 15:46
  Speaker 1: fuck haven't slept as we all know, like your delirious.
• 15:50
  Speaker 1: And then yeah, some lady probably about seven or eight
• 15:52
  Speaker 1: minutes later comes back and goes, congratulations you've had a
• 15:54
  Speaker 1: little kid.
• 15:55
  Speaker 3: Wow.
• 15:56
  Speaker 2: So fuck.
• 16:00
  Speaker 3: No, it's okay.
• 16:01
  Speaker 1: John to cry.
• 16:04
  Speaker 2: I'm a fucking cry. So like, if there's a place
• 16:06
  Speaker 2: that you can cry, it's here. Yeah, if you if
• 16:10
  Speaker 2: you want any time at.
• 16:11
  Speaker 1: All, it's good. It's it's kind of nice. I shouldn't
• 16:14
  Speaker 1: say it's nicecause it's stainly not nice, but it's good
• 16:16
  Speaker 1: to voice. And obviously said it out there right because
• 16:19
  Speaker 1: he's no compartmentalizer. So, like I said, from the time
• 16:23
  Speaker 1: they pressed the button to delivery was from what I understand,
• 16:25
  Speaker 1: like eight ten minutes something like that. They put Alex
• 16:28
  Speaker 1: straight under like like straight to sleep, cut her open,
• 16:30
  Speaker 1: pulled the baby out, and then it's probably about an
• 16:32
  Speaker 1: hour an hour and a half until I could see
• 16:34
  Speaker 1: Frankie and the first time I ever saw her, she
• 16:39
  Speaker 1: was in a little like incubate.
• 16:43
  Speaker 2: You can take a second if you Jack, that's good.
• 16:45
  Speaker 3: It's good.
• 16:46
  Speaker 1: She's a little incubator. She wouldn't have been much bigger
• 16:49
  Speaker 1: than this, and she had probably half a dozen to
• 16:53
  Speaker 1: a dozen wires hanging off her and she had a
• 16:55
  Speaker 1: sea pat machine. So she was obviously being a help.
• 17:00
  Speaker 1: Her breathing to be helped, and that was pretty difficult.
• 17:03
  Speaker 1: And then Alex. The first time Alex got to meet
• 17:06
  Speaker 1: Frankie was on FaceTime, So I think as a family
• 17:08
  Speaker 1: were quite robbed of that particular experience of like what
• 17:12
  Speaker 1: you asked him before about being a father and how
• 17:15
  Speaker 1: like when did you know and all those types of things.
• 17:16
  Speaker 1: And obviously that's probably such a crescendo point in being
• 17:19
  Speaker 1: a dad's being there, cutting the cord, having the sharing
• 17:23
  Speaker 1: that moment with your wife and your child.
• 17:26
  Speaker 2: It's what you imagine it to be like in movies.
• 17:29
  Speaker 1: You see what you see in movies, and listen, don't
• 17:30
  Speaker 1: get me wrong, there's a lot of people that don't
• 17:32
  Speaker 1: get that, but they get some level of that. We've
• 17:34
  Speaker 1: got none of that. Yeah, So that was that's Frankie's
• 17:37
  Speaker 1: first kind of story. And from that point we spent
• 17:41
  Speaker 1: probably eight eight or nine weeks in Nyiku in terms
• 17:45
  Speaker 1: of and we started at RPA and then we're transferred
• 17:48
  Speaker 1: to Prince of Wales and then Prince of Wales Private,
• 17:51
  Speaker 1: and that was a pretty tough, like eight weeks, because
• 17:54
  Speaker 1: you have the child, and then the baby doesn't get
• 17:57
  Speaker 1: to come home with you, like even if your wife's
• 17:58
  Speaker 1: kind of in a room and where the way that
• 18:00
  Speaker 1: nicle worked at APA, and I hope that none of
• 18:02
  Speaker 1: you ever really have to truly spend some time there.
• 18:05
  Speaker 1: But the wards are upstairs and the babies are downstairs,
• 18:07
  Speaker 1: so you're not really with your child either. You get
• 18:10
  Speaker 1: to go and visit them and whatever else, but you're
• 18:13
  Speaker 1: not with the baby. They're being taken care of amazingly
• 18:16
  Speaker 1: by the nurses and the like, but you're you're not there.
• 18:20
  Speaker 1: It's not yours and you're not sleeping next to it.
• 18:22
  Speaker 2: Do you think there's Maybe there's not, but do you
• 18:24
  Speaker 2: think there's any just mentally knowing that you're not even
• 18:27
  Speaker 2: on the same floor, that the separation is in height,
• 18:31
  Speaker 2: and more so I think looking back.
• 18:32
  Speaker 1: At it, it probably is. At the time, you're just
• 18:34
  Speaker 1: in survival mode. You're just going, fuck, I've had this kid,
• 18:38
  Speaker 1: what the fuck's going on? The world is not I mean,
• 18:41
  Speaker 1: you've never prepared for a child, I would think, But
• 18:44
  Speaker 1: when nothing goes the way that it's meant to, I
• 18:47
  Speaker 1: think you just kind of just go I've just got
• 18:49
  Speaker 1: to survive. I've just got to survive. I've just got
• 18:51
  Speaker 1: to get through this.
• 18:52
  Speaker 4: It's such a unique place and time to be and
• 18:55
  Speaker 4: right because even for like myself with Oscar was an emergency,
• 18:58
  Speaker 4: but same thing, I didn't have all the information. And
• 19:01
  Speaker 4: you're in that headspace any delirious, like you were saying before.
• 19:05
  Speaker 4: Then all of a sudden you're separated. And then the
• 19:07
  Speaker 4: thing that really weighs on my mind there where you
• 19:10
  Speaker 4: say we've got to they don't get to come home
• 19:12
  Speaker 4: with you, which I know Vickers spoken about before.
• 19:15
  Speaker 3: It must be just so heartbreaking.
• 19:17
  Speaker 1: I think it is. But at that point in time,
• 19:20
  Speaker 1: we were probably just going, fuck, ut lest she survived.
• 19:23
  Speaker 1: I think that was probably where our headspace was. It
• 19:26
  Speaker 1: was like she was PREMI we didn't really know what
• 19:30
  Speaker 1: her probability of survival of being such a small baby
• 19:33
  Speaker 1: was in the first instance, but I think it was
• 19:35
  Speaker 1: like we've had a kid, it's not gone the way
• 19:37
  Speaker 1: we wanted to, but nothing in life goes the way
• 19:39
  Speaker 1: you truly want it to. And it was more like her, Right,
• 19:41
  Speaker 1: we've got her. She's not with us, but she's here.
• 19:45
  Speaker 1: We'll get through this moment in time, and then we'll
• 19:49
  Speaker 1: start our lives in inverted commas.
• 19:51
  Speaker 2: Right. So, at this point, knowing that she's PREMI, she
• 19:55
  Speaker 2: potentially has had some time with a lack of oxygen,
• 19:59
  Speaker 2: has anyone given you any type of information on what
• 20:02
  Speaker 2: impact that could have?
• 20:03
  Speaker 1: No, so, not necessarily. I think they said that her
• 20:07
  Speaker 1: all of the the app guards and the oxygens and
• 20:09
  Speaker 1: all those things seem to have been okay. And I
• 20:12
  Speaker 1: think there's a we'll touch on this in some time,
• 20:14
  Speaker 1: but if she's under thirty weeks, they would have given
• 20:17
  Speaker 1: her an MRI to check her brain, and she was
• 20:19
  Speaker 1: just past that time apparently, And whether that's like I said,
• 20:23
  Speaker 1: we've learned as we have gone on, but the MRI
• 20:26
  Speaker 1: itself will probably would have shown a lack of white metal.
• 20:31
  Speaker 1: But yeah, so at that point we didn't know that
• 20:33
  Speaker 1: there was anything wrong. We just thought she was a PREMI.
• 20:35
  Speaker 1: Everyone said that things were like kunky Dory, she just
• 20:37
  Speaker 1: had to stay nicer until she grew keep her monitored
• 20:40
  Speaker 1: and then in eight ten weeks we'll get a home
• 20:43
  Speaker 1: and start again.
• 20:43
  Speaker 4: How is mum recovering after it, because we talk about
• 20:46
  Speaker 4: the baby and stuff like that, but also Mum's gone
• 20:48
  Speaker 4: through this too.
• 20:49
  Speaker 1: Yeah, so she was. She's stoic moa sue. Alex is superhuman, right,
• 20:54
  Speaker 1: So she was just pumped that she had a kid.
• 20:56
  Speaker 1: Obviously she'd had a cesarean, which we know is not
• 20:59
  Speaker 1: the greatest of things, and a recovery time is long time.
• 21:01
  Speaker 1: It's a long time. But yeah, she, like a lot
• 21:05
  Speaker 1: of things, she takes it, just takes it in astride
• 21:07
  Speaker 1: and gets on with it because we've kind of has
• 21:09
  Speaker 1: time's gone on, we've had to but yeah, she at
• 21:12
  Speaker 1: that point in time, she was happy that she had
• 21:14
  Speaker 1: a kid. Didn't go the way we wanted to, but
• 21:15
  Speaker 1: we had a little girl, Frankie, and yeah, she was
• 21:17
  Speaker 1: in a pretty good headspace all things consider it.
• 21:21
  Speaker 2: And then at what point in the weeks following did
• 21:24
  Speaker 2: a test notify you guys that something wasn't what it
• 21:28
  Speaker 2: had to do?
• 21:28
  Speaker 1: So we took Frankie home, probably eight weeks after her birth,
• 21:32
  Speaker 1: so like in April and then I'm a stubborn walk
• 21:35
  Speaker 1: and I haven't kind of traditioned around. Well, I wanted
• 21:37
  Speaker 1: to create a tradition around. My grandfather came from a
• 21:39
  Speaker 1: small village in Cypress and he was christening this in
• 21:43
  Speaker 1: a church in his village in the sat in a vat.
• 21:44
  Speaker 1: I was christening in the same church and he was
• 21:48
  Speaker 1: still alive at that time, and I wanted to take
• 21:50
  Speaker 1: Frankie to Cypress to do that whilst the whole family
• 21:52
  Speaker 1: was still together, because like I said, I'm stubborn and
• 21:55
  Speaker 1: my way the highway sometimes and I forced everybody there.
• 21:58
  Speaker 1: But so we took the trip, and she was probably
• 22:00
  Speaker 1: two and a half or three months old at that point,
• 22:02
  Speaker 1: which I think, in hindsight probably wasn't the right thing
• 22:04
  Speaker 1: to do, but we didn't know any better.
• 22:06
  Speaker 2: Can I just say I took Marley on a trip
• 22:10
  Speaker 2: overseas when she was three months going to Europe as well,
• 22:14
  Speaker 2: go and say it's nice, thank you.
• 22:20
  Speaker 1: So we did this little holiday, but Frankie was so
• 22:23
  Speaker 1: temperamental and difficult and wouldn't sleep and wouldn't be on
• 22:27
  Speaker 1: the boob, and we went while we're over there, so
• 22:30
  Speaker 1: it wasn't really a holiday obviously, with the intention was
• 22:32
  Speaker 1: that it was going to be a holiday, but as
• 22:34
  Speaker 1: things went on, she kind of got worse and was
• 22:37
  Speaker 1: crying and just called restless, would not sleep, wouldn't boob,
• 22:40
  Speaker 1: wouldn't feed. Took her to the hospital in Cyrpus, took
• 22:43
  Speaker 1: her to the doctor, everyone saying, it's colleague, it's this,
• 22:46
  Speaker 1: it's that, whatever else. We weren't seeing any seizure activity,
• 22:50
  Speaker 1: or at least we didn't know what a sege looked
• 22:52
  Speaker 1: like at that point in time, so wee. So we
• 22:54
  Speaker 1: did that trip, came home. We're like, fuck, she's just
• 22:57
  Speaker 1: a difficult kid. Everyone's kind of going sugar out of it,
• 23:00
  Speaker 1: sugar out of it. We took it at the er
• 23:02
  Speaker 1: a couple of times and then Alex noticed which and
• 23:06
  Speaker 1: again everyone was saying, colleague purple, crying, all these other
• 23:09
  Speaker 1: kind of things. And then Alex noticed her starting to
• 23:11
  Speaker 1: do like these kind of like small little twitches or tweaks.
• 23:15
  Speaker 1: And then our film that, like I said, our GP
• 23:18
  Speaker 1: kind of said, hey, like it's nothing to worry about.
• 23:21
  Speaker 1: The said the doctors at the hospital said nothing to
• 23:23
  Speaker 1: worry about. And then Alex filmed it, and then we
• 23:25
  Speaker 1: went back to er and said, hey, this is what
• 23:27
  Speaker 1: she's doing because it wasn't constant. It was kind of
• 23:30
  Speaker 1: like in and out spring and.
• 23:31
  Speaker 2: It's so important to get it on camera.
• 23:33
  Speaker 1: Do you have to get it on camera? Because like
• 23:35
  Speaker 1: I said, we were knocked back and she probably was
• 23:37
  Speaker 1: doing that a little bit. The siege is a little
• 23:39
  Speaker 1: bit before when we last couple of times went too
• 23:41
  Speaker 1: r but we didn't have it on film and she
• 23:43
  Speaker 1: wasn't doing it. When we're then they're like dismissive. You
• 23:46
  Speaker 1: just overly cautious parents, whatever it may be.
• 23:47
  Speaker 3: You can't get to do it on demand as well.
• 23:49
  Speaker 1: Yeah, but it's hard to see.
• 23:51
  Speaker 2: So when they're that young, they're not in control of
• 23:54
  Speaker 2: their body, and it's such a fine line between it's
• 23:57
  Speaker 2: just them moving about to having like, yeah.
• 24:01
  Speaker 1: She was like she was pretty much jackknifing. So effectively,
• 24:04
  Speaker 1: what she was doing was she'd be like a normal
• 24:06
  Speaker 1: baby paying around and then she'd lock her arms in,
• 24:09
  Speaker 1: turn her head and then kick her legs up and
• 24:13
  Speaker 1: so it was just like a full blown like tick.
• 24:15
  Speaker 1: And so when we took her back to er and
• 24:18
  Speaker 1: we showed in the video and like you know when
• 24:20
  Speaker 1: people say, oh fuck, I hate sitting around in the er.
• 24:22
  Speaker 1: If you're sitting around waiting in an ar it means
• 24:24
  Speaker 1: you've got nothing wrong with you. Yeah, we showed on
• 24:26
  Speaker 1: this video and they were like, you asked, let's go.
• 24:29
  Speaker 1: So that was at about four months old, and then
• 24:31
  Speaker 1: we probably didn't leave the hospital for a good two
• 24:35
  Speaker 1: or three months again.
• 24:35
  Speaker 2: After that, whoa, yeah, were diagnosed. This we given.
• 24:39
  Speaker 1: So what happened effectively was they took us up to
• 24:42
  Speaker 1: the neurology ward. They scanned her body with a blue light.
• 24:44
  Speaker 1: I'm not sure why they did that, and then they
• 24:46
  Speaker 1: booked us in that night or that day for a MRI.
• 24:50
  Speaker 1: And what happens then, obviously, is they put the baby
• 24:52
  Speaker 1: to sleep, they scanned her brain, they kind of wake up,
• 24:56
  Speaker 1: and then you wait for the results. So we're kind
• 24:57
  Speaker 1: of sitting around in this neurology ward, doctors kind of
• 25:00
  Speaker 1: in and out, in and out, in and out, and
• 25:01
  Speaker 1: then they said, oh, can you just come with us,
• 25:04
  Speaker 1: And so we got taken into like a white and again,
• 25:05
  Speaker 1: fucking white room seems to be the place to go
• 25:08
  Speaker 1: when something sucks up in the hospital. But we get
• 25:10
  Speaker 1: taken this white room and here we go cry again
• 25:15
  Speaker 1: it's okay, and it's me and Alex the neurologists, and
• 25:20
  Speaker 1: the neurologists is offsider and then a social worker and
• 25:24
  Speaker 1: they sit down and they say, like listen, sorry, so
• 25:31
  Speaker 1: hard to really good. They said, oh, she's got a
• 25:38
  Speaker 1: lack of white matter on the brain, and like, what
• 25:40
  Speaker 1: the fuck does that mean? And they said like, we
• 25:46
  Speaker 1: don't know what's caused it, so we can't tell you
• 25:48
  Speaker 1: that it's surreal palsy, but it is the equivalent of
• 25:51
  Speaker 1: what cerebral pauses, which is effectively a white matter loss,
• 25:53
  Speaker 1: whether that's from injury or something else on the brain.
• 25:56
  Speaker 1: And they weren't sure whether it was injury or a
• 25:58
  Speaker 1: genetic cause. And I just remember just the whole world
• 26:04
  Speaker 1: and yeah, that's a pretty fucking tough day. Alex and
• 26:09
  Speaker 1: I gathered our thoughts, and I remember that we were
• 26:11
  Speaker 1: sitting there and it was the first night and probably
• 26:14
  Speaker 1: similar there was still a little bit of that kind
• 26:16
  Speaker 1: of covidness around. But they wouldn't let Alex and I
• 26:19
  Speaker 1: stay at the hospital together that night, and they said, listen,
• 26:22
  Speaker 1: you two go home, go home. I had Alex. We
• 26:25
  Speaker 1: went to the hospital not thinking we had to pack
• 26:26
  Speaker 1: a bag. So I was like, let's go home and
• 26:28
  Speaker 1: I remember we get home after the fucking world has
• 26:31
  Speaker 1: just collapsed, and we both get in the shower together
• 26:33
  Speaker 1: and we just sit in the shower. We both sit
• 26:35
  Speaker 1: on the floor in the shower for an hour, just
• 26:37
  Speaker 1: in tears. And she said to me this, she said,
• 26:39
  Speaker 1: I remember you saying to me like what's going to
• 26:41
  Speaker 1: be is going to be and we will get through this.
• 26:45
  Speaker 1: And fuck, I think we're still together. We're still here,
• 26:48
  Speaker 1: so we're clearly getting through this. But yeah, that moment
• 26:52
  Speaker 1: in time was probably the worst experience I think I've
• 26:56
  Speaker 1: ever had. And I called my mum that day and
• 26:59
  Speaker 1: I and fuck, I'm going to.
• 27:04
  Speaker 2: Tell you, it's so brave of you to be able
• 27:08
  Speaker 2: to be this open, and can we tell your story.
• 27:10
  Speaker 1: I think it's more about making sure that others that
• 27:12
  Speaker 1: go through something like this have know that it's going
• 27:15
  Speaker 1: to be okay in some way. But I remember I'm
• 27:18
  Speaker 1: calling my mum and just going, I don't want to leave.
• 27:25
  Speaker 1: You know, It's like, if she's going to be what
• 27:27
  Speaker 1: the doctors are saying she's going to be, the world's
• 27:30
  Speaker 1: not fair enough till personally that and I don't want
• 27:32
  Speaker 1: her to have to experience a life like that. So
• 27:35
  Speaker 1: that was a fucking, very tough, tough time in our life.
• 27:38
  Speaker 1: And that was before we found out that she lost
• 27:41
  Speaker 1: a sight too, so it's another part of the story.
• 27:44
  Speaker 1: But yeah, it was not a very easy time for us.
• 27:48
  Speaker 1: And I think the time that, like I said before,
• 27:51
  Speaker 1: that Alex and I were friends before getting together, probably
• 27:55
  Speaker 1: really made us able to get through that moment a
• 27:59
  Speaker 1: little bit better, I would think, a little bit more
• 28:01
  Speaker 1: healthy because that friendship was the foundation for what we had.
• 28:04
  Speaker 1: And being in a situation like that where your fucking
• 28:07
  Speaker 1: word's upside down and you don't know what tomorrow is
• 28:09
  Speaker 1: going to bring, you need that person behind you or
• 28:12
  Speaker 1: next to you, holding your hand, supporting you, and you
• 28:14
  Speaker 1: need to support each other. And I, yeah, that time
• 28:16
  Speaker 1: in my life was certainly certainly the hardest and probably,
• 28:21
  Speaker 1: I hope is the hardest moment that I ever have
• 28:23
  Speaker 1: to have and I and I would never wish that
• 28:27
  Speaker 1: on my worst enemy.
• 28:28
  Speaker 2: When you're going through those tough times, is there anything
• 28:32
  Speaker 2: that helped you? You know, if you're going down, you're
• 28:36
  Speaker 2: spiraling about your circumstance, And I think the hardest thing
• 28:39
  Speaker 2: can be when the reality of life doesn't match up
• 28:42
  Speaker 2: to what your expectations were and when you think about
• 28:46
  Speaker 2: that and you're struggling, what would help you?
• 28:50
  Speaker 1: I always say this, like the Sun's going to come
• 28:52
  Speaker 1: up tomorrow, right like, and you know that there are
• 28:56
  Speaker 1: really beautiful moments in life that are really beautiful and
• 28:59
  Speaker 1: they will happen. And again, I think everybody has tough moments,
• 29:02
  Speaker 1: and everybody has peeks and troughs, and I think, yeah,
• 29:05
  Speaker 1: it's just simply that the son's going to come up,
• 29:08
  Speaker 1: and if it doesn't, we're all in trouble anyway. And
• 29:10
  Speaker 1: I've said I say that quite a bit. I think
• 29:11
  Speaker 1: it's that thing of tomorrow's a new day. Tomorrow might
• 29:16
  Speaker 1: be shitter than the day before, but at some point
• 29:19
  Speaker 1: something's going to turn. And you've got this little girl
• 29:22
  Speaker 1: that's super reliant on you, now like you can't she
• 29:24
  Speaker 1: doesn't come with a warranty. You can't give her back,
• 29:26
  Speaker 1: not that you would, but your reliant on her. I think, yeah,
• 29:33
  Speaker 1: if maybe if she didn't make it, then things would
• 29:35
  Speaker 1: be different. But certainly that having her there, knowing that
• 29:39
  Speaker 1: the only thing that she has is Alex and I
• 29:42
  Speaker 1: probably gave us the strength to just keep going because
• 29:44
  Speaker 1: you don't have an alternative there's no alternative solution, Like
• 29:47
  Speaker 1: what is your alternative?
• 29:48
  Speaker 4: It must be such a profound feeling to think, Okay, well,
• 29:51
  Speaker 4: like you said that, like Frankie has us and is
• 29:54
  Speaker 4: going to rely on us so much, and it's sort
• 29:56
  Speaker 4: of it gives you another purpose, right.
• 29:59
  Speaker 1: Give a complete purpose now in life.
• 30:01
  Speaker 4: And I just want to go back to that time
• 30:03
  Speaker 4: you went you went home, you sat in the shower,
• 30:06
  Speaker 4: you're trying to process that. Can you tell us a
• 30:09
  Speaker 4: little bit what happens next? I mean for Matt and
• 30:12
  Speaker 4: I who've never been through anything like this, let alone
• 30:14
  Speaker 4: been able to talk to someone in such depth, and
• 30:16
  Speaker 4: we do appreciate it, thank you for having us, But
• 30:18
  Speaker 4: like I'm interested to know what happens next.
• 30:20
  Speaker 1: Sure, so I took Alex back to the hospital and
• 30:25
  Speaker 1: then it just becomes doctors, tests, meetings, information, information dump.
• 30:32
  Speaker 1: And for us, there wasn't a like I said before,
• 30:35
  Speaker 1: there wasn't a finite like, all right, there's an injury
• 30:37
  Speaker 1: on the brain. This is what this is what it is.
• 30:40
  Speaker 3: It was like it.
• 30:41
  Speaker 1: Could be an injury or it could be genetic. So
• 30:44
  Speaker 1: then you spiral again because you're like, all right, well
• 30:46
  Speaker 1: if it could be this, or it could be that,
• 30:48
  Speaker 1: and I think for us it was more not having
• 30:51
  Speaker 1: an answer made it a little bit harder. But you
• 30:54
  Speaker 1: just try to information dump as quick as you can
• 30:57
  Speaker 1: and pull as much info out on everything that's kind
• 30:59
  Speaker 1: of been given, and you just have to learn to
• 31:02
  Speaker 1: adapt to what's been put in front of you. Like
• 31:05
  Speaker 1: I think that's what it comes down to, is you
• 31:07
  Speaker 1: just go, all right, well, the doctors start telling you
• 31:10
  Speaker 1: this information, so then you quick doctor Google or I
• 31:13
  Speaker 1: don't think, I mean AI was around, but no one
• 31:15
  Speaker 1: was really using it like I did lew today. But yeah,
• 31:18
  Speaker 1: so it was all about like doctor will say this
• 31:20
  Speaker 1: quick deep dive till the next meeting, what's that about?
• 31:22
  Speaker 1: And then like you're learning all these words and hearing
• 31:25
  Speaker 1: all these things that you wish you never had to
• 31:27
  Speaker 1: hear about.
• 31:27
  Speaker 3: Yeah, you must find yourself in a lot of information spirals.
• 31:31
  Speaker 1: You're doom scrolling info. Oh I couldn't, but you're not
• 31:35
  Speaker 1: doom scrolling images. You're doom scrolling info and just trying
• 31:38
  Speaker 1: to absorb as much info as you possibly can about
• 31:42
  Speaker 1: whatever that doctor or that person had just told you
• 31:44
  Speaker 1: about prior before the next person comes in. So, like
• 31:47
  Speaker 1: I said, there was a lot of tests. That poor
• 31:50
  Speaker 1: little thing was a pincush and blood test, you'reine test.
• 31:53
  Speaker 1: You had to catch piss all the time just to
• 31:55
  Speaker 1: make sure, like all those types of things.
• 31:58
  Speaker 2: I'm just trying to think of, like what it must
• 31:59
  Speaker 2: be like. And because sometimes and this is not an
• 32:02
  Speaker 2: attack on healthcare, like doctors.
• 32:04
  Speaker 1: But when they explain for you guys to strike, how
• 32:08
  Speaker 1: would R.
• 32:11
  Speaker 2: But the sploreed it out like like you and you're
• 32:15
  Speaker 2: like every second word, You're like, can you just say that?
• 32:17
  Speaker 2: Like how do you spell that? I don't know how
• 32:19
  Speaker 2: word per pvls.
• 32:21
  Speaker 1: And acronyms and all these things, and you just go,
• 32:23
  Speaker 1: like I.
• 32:24
  Speaker 2: Said, again, what does that mean? Running?
• 32:26
  Speaker 1: Per? I can't even say peri ventricular loucal Malaysia, which
• 32:29
  Speaker 1: is a wow, give us that one more time, ventricular
• 32:34
  Speaker 1: luca Malaysia. So like there's all these acronyms and words
• 32:37
  Speaker 1: that you just doctor google, But what's that mean? What's
• 32:40
  Speaker 1: that mean? What's that meaning? Before the use of AI
• 32:42
  Speaker 1: or the AI wasn't kind of there at that point
• 32:45
  Speaker 1: in time. That was what we were doing, was just
• 32:47
  Speaker 1: googling all these acronyms.
• 32:49
  Speaker 2: What information were they telling you about? Like long term impact?
• 32:53
  Speaker 1: They they didn't and they and I think they do
• 32:55
  Speaker 1: that selectively because they don't truly I mean, the more
• 32:58
  Speaker 1: you go on and I that we have a beautiful
• 33:00
  Speaker 1: health system, so please don't think this is this isn't
• 33:04
  Speaker 1: any indication of our belief. But I think it's more
• 33:07
  Speaker 1: they don't truly know when a baby's that size what
• 33:10
  Speaker 1: the outcome is going to be, because it's like a
• 33:13
  Speaker 1: spectrum of it's a gamut, right, Like there are people
• 33:16
  Speaker 1: out there that have no brain, with all due respect
• 33:19
  Speaker 1: that and literally when I mean like a physical no brain,
• 33:21
  Speaker 1: who have completely operational and functional with full brains that
• 33:24
  Speaker 1: are vegetables.
• 33:25
  Speaker 3: Right.
• 33:26
  Speaker 1: So I don't think they're going to say to you, hey,
• 33:29
  Speaker 1: your kid's going to be this, and this is the
• 33:30
  Speaker 1: life expectancy in this what is because it's just not
• 33:34
  Speaker 1: it's just not how medicine I think works.
• 33:36
  Speaker 3: Yeah, everyone's going to be different.
• 33:39
  Speaker 1: And so for us it was, like I said, the
• 33:42
  Speaker 1: doctors were going, oh, it's it could be this or
• 33:44
  Speaker 1: it could be that, Like this is that this is
• 33:46
  Speaker 1: the spectrum of what the outcome is, the likelihood of
• 33:49
  Speaker 1: the outcome is, and maybe they kind of play it
• 33:52
  Speaker 1: down a little bit so that they don't just dump
• 33:54
  Speaker 1: you with the reality of what your life's going to be,
• 33:57
  Speaker 1: rather than going get your kids fucked politely and this
• 34:00
  Speaker 1: is your life and good luck and it's over. I
• 34:02
  Speaker 1: think that they slowly drip feed you what you need
• 34:06
  Speaker 1: to so you can process at least a little.
• 34:08
  Speaker 2: Frank is that how old is she now?
• 34:09
  Speaker 1: Four? Four in April, and so she's obviously premier.
• 34:12
  Speaker 2: At like the three year market. They're giving you any
• 34:16
  Speaker 2: expectation of what her ability will be.
• 34:18
  Speaker 1: It's funny they don't say that, but when we go
• 34:20
  Speaker 1: and catch up with the neurologists or the doctors or
• 34:22
  Speaker 1: whoever we're the specialsts that we're catching up with, they
• 34:24
  Speaker 1: will say, she's doing more than we thought. So that's
• 34:27
  Speaker 1: quite that's quite reassuring or comforting. It means that obviously
• 34:31
  Speaker 1: they had, like I said, they were holding information back.
• 34:33
  Speaker 1: I think as you. But she's doing things that they
• 34:36
  Speaker 1: didn't expect her to be doing.
• 34:40
  Speaker 2: I saw the video where she was speaking for the
• 34:43
  Speaker 2: first time. Was that something that you were expecting or
• 34:47
  Speaker 2: were you always hoping for?
• 34:48
  Speaker 1: I think you always hope for. You hope for normalcy, right,
• 34:51
  Speaker 1: you hope to have a child that's going to run
• 34:52
  Speaker 1: home run up to you when you get home from
• 34:54
  Speaker 1: the from the office, from the office, or from work,
• 34:56
  Speaker 1: or whoever it may be. So you want that, And yeah,
• 35:00
  Speaker 1: I think having an expectation of a child like Frankie
• 35:03
  Speaker 1: will only make you feel really bad, like it'll bring
• 35:06
  Speaker 1: you down. So we have no expectations on her. It's
• 35:09
  Speaker 1: not a fair pressure to put on her. We try
• 35:11
  Speaker 1: our best to give her every opportunity to excel and
• 35:15
  Speaker 1: do the most normal thing she possibly can, and that's
• 35:18
  Speaker 1: talk and feed herself. We bought her a walking machine,
• 35:22
  Speaker 1: which is like a robotic gate walker, to try and
• 35:24
  Speaker 1: get her body moving. Whether she lever walk unassisted, who knows,
• 35:28
  Speaker 1: but I think medicine's going the right way and with
• 35:31
  Speaker 1: AI and technology, Like the other day we saw a
• 35:33
  Speaker 1: robot that's effectively a walker with a gyroscope that will
• 35:36
  Speaker 1: keep a child like Frankie stable so she can walk
• 35:40
  Speaker 1: by herself. Yeah, so from your question about like her talking,
• 35:45
  Speaker 1: we don't have an expectation on her. That's not fair
• 35:47
  Speaker 1: to do that to her. We want it, We yearn
• 35:49
  Speaker 1: for it, because that's what you want as a parent.
• 35:51
  Speaker 1: You want to see your child do everything they possibly can.
• 35:53
  Speaker 1: But when she does things. We're fucking through the roof.
• 35:56
  Speaker 1: We're so excited about the simplest things and the inch
• 36:01
  Speaker 1: stones rather than the milestones or the miller stones or
• 36:04
  Speaker 1: whatever it may be. Like, any tiny little improvement for
• 36:07
  Speaker 1: us is fucking massive.
• 36:08
  Speaker 2: What are those improvements? What are they like?
• 36:11
  Speaker 1: Just like, for example, she like she can now she'll
• 36:13
  Speaker 1: bring a water bottle to herself, she can feed her self,
• 36:15
  Speaker 1: feed a little bit, she can army crawl saying mom
• 36:20
  Speaker 1: and dad, and there's a few more words coming into
• 36:23
  Speaker 1: a vocabulary, like if she wants more food, she'll say more.
• 36:27
  Speaker 4: Like.
• 36:27
  Speaker 1: Those are the types of things that we're starting to
• 36:30
  Speaker 1: see now, and it's taken a fucking lot of work,
• 36:33
  Speaker 1: like a fuck a lot of work. But the poor
• 36:35
  Speaker 1: little thing she she doesn't like praise. So like when
• 36:38
  Speaker 1: you when you like she does something and you like
• 36:41
  Speaker 1: Alex and I jump for joy, she just like she
• 36:43
  Speaker 1: shuts She shuts down a little bit and like starts
• 36:45
  Speaker 1: to cry. I think I don't know whether she thinks
• 36:46
  Speaker 1: she's in trouble or she doesn't like being put on show.
• 36:49
  Speaker 1: But we're so ecstatic, but we have to kind of
• 36:52
  Speaker 1: have to control that emotion a little bit. We're just
• 36:54
  Speaker 1: like the corner of it, Like it's like baby sleeping.
• 37:00
  Speaker 2: You like could just like wave your hand, no noise.
• 37:04
  Speaker 1: That's exactly what it's like. And so every moment where
• 37:08
  Speaker 1: she does something that we're not expecting is a brilliant
• 37:11
  Speaker 1: moment and it's probably, I would assume, because again we
• 37:14
  Speaker 1: haven't lived it. When your child takes the first step,
• 37:17
  Speaker 1: how excited you are, or your child says their first
• 37:19
  Speaker 1: Now I can say a child says their first word.
• 37:21
  Speaker 1: It's like a really fulfilling moment in time. And that's
• 37:24
  Speaker 1: probably part the part of parenthood that most people have
• 37:27
  Speaker 1: kids for is to bring someone up, take care of them,
• 37:30
  Speaker 1: look after them, and make them try and excel in
• 37:32
  Speaker 1: the world as best that they possibly can.
• 37:34
  Speaker 4: It's funny those moments like I don't know we hit
• 37:37
  Speaker 4: you right, especially, I mean for you guys that I
• 37:39
  Speaker 4: was going through all that and then celebrating those wins.
• 37:43
  Speaker 4: It must be amazing to hear her same mom and dad.
• 37:48
  Speaker 1: Mom, my dad, And what.
• 38:02
  Speaker 4: Is you want?
• 38:06
  Speaker 2: Yeah, Like I think you talk about you know what
• 38:08
  Speaker 2: your expectations are, and you're trying not to have certain
• 38:12
  Speaker 2: benchmarks in mind. But I remember when when my girls,
• 38:16
  Speaker 2: you know, that first time, like, I'm a pretty needy
• 38:19
  Speaker 2: parent and that.
• 38:20
  Speaker 1: Give me what I want.
• 38:24
  Speaker 2: It's funny, and I guess we have a lot of
• 38:25
  Speaker 2: non parents also listened to the podcast, and you know,
• 38:29
  Speaker 2: what is it like for yourself not having expectations on
• 38:33
  Speaker 2: what milestones she will be able to hit, to then
• 38:35
  Speaker 2: be surprised and hear the words dad come out of
• 38:38
  Speaker 2: Frankie's mouth.
• 38:38
  Speaker 1: Well, it was mama first, which.
• 38:41
  Speaker 2: Apparently is easy to say.
• 38:43
  Speaker 1: It's who's the favorite mama? So there was a little
• 38:49
  Speaker 1: bit of jealousy and envy. Let's let's call, which is
• 38:52
  Speaker 1: probably normal, it's a normal experience, but we're in the
• 38:54
  Speaker 1: same boat. When she said that that dad, it was
• 38:59
  Speaker 1: a really heartfelt, warm and fulfilling moment. I think you
• 39:02
  Speaker 1: definitely as parents, like I said, you get these moments
• 39:05
  Speaker 1: in time where you have a child or your your
• 39:08
  Speaker 1: you think this is the way that your life's going
• 39:09
  Speaker 1: to go. So to get like a normal moment was
• 39:12
  Speaker 1: really beautiful. I remember looking at Alex and I teared
• 39:15
  Speaker 1: up a little bit about that particular moment, and she
• 39:18
  Speaker 1: was so smug about it too, because Alex was like, yes,
• 39:20
  Speaker 1: she's saying it both and I, yeah, it's it filled
• 39:24
  Speaker 1: me with a lot of a lot of warmth. And yeah,
• 39:27
  Speaker 1: it's a moment that I'll cherish for the rest of
• 39:28
  Speaker 1: my life.
• 39:29
  Speaker 2: It's funny when you say, like it gives you just
• 39:31
  Speaker 2: a bit of normality, which I think is so easy
• 39:35
  Speaker 2: to underestimate what you what you want yearn for.
• 39:38
  Speaker 1: Of course, we yearn for the normal, the normalcy. We
• 39:40
  Speaker 1: don't have the normalcy. And like I said before, we're
• 39:43
  Speaker 1: not we're not here to compare to anybody else. But
• 39:45
  Speaker 1: you have a child because what you want to be
• 39:47
  Speaker 1: a parent because you want those normal things and you
• 39:49
  Speaker 1: want that normal trajectory in pathway. And so yeah, we
• 39:53
  Speaker 1: really get these little glimpses of what the traditional let's
• 39:57
  Speaker 1: call it parenting experiences like, and they feel us with
• 40:00
  Speaker 1: so much joy. And I think because we don't get
• 40:02
  Speaker 1: it as much, we probably don't take it for granted
• 40:04
  Speaker 1: as much, I would think. And so when it happens,
• 40:07
  Speaker 1: it's a real Cameras come out, Frankie shuts down, and
• 40:11
  Speaker 1: then we film it and then we send to the
• 40:12
  Speaker 1: family and go, look, gotcha that. But yeah, those moments
• 40:15
  Speaker 1: are you cherish, and I think we will cherish a
• 40:18
  Speaker 1: lot more because we're not sure when the next one's coming.
• 40:22
  Speaker 2: How do you find other adults react to you, guys,
• 40:26
  Speaker 2: when you're in public, when you're with.
• 40:27
  Speaker 1: That That's a really good question, and you certainly get
• 40:31
  Speaker 1: a mix of reactions. I like to think that I'm
• 40:33
  Speaker 1: quite oblivious to others, and whether that's a good thing
• 40:37
  Speaker 1: or a bad thing, I don't know. But I know
• 40:39
  Speaker 1: that Alex really notices the world around her from that perspective.
• 40:45
  Speaker 1: And we've had really brilliant experiences where Alec, either ourselves
• 40:50
  Speaker 1: or Frankie's got a couple of caros who do a
• 40:52
  Speaker 1: couple of hours a day and they're the most brilliant, brilliant,
• 40:55
  Speaker 1: brilliant girls. We'll take it to the park and a
• 40:58
  Speaker 1: grandmother and a little kid will come up and player
• 41:00
  Speaker 1: with Frankie or hold a hand or or be really inquisitive.
• 41:03
  Speaker 1: And that's the really beautiful side of it. But then
• 41:07
  Speaker 1: you see others that just fucking stare right, and they're
• 41:10
  Speaker 1: just like, they're just looking and they don't like and
• 41:13
  Speaker 1: staring's okay because obviously, yes, sure she's a little bit
• 41:15
  Speaker 1: different and she's got little things on her legs to
• 41:17
  Speaker 1: kind of keep her ankle straight and the like. But stare,
• 41:22
  Speaker 1: look at the parents, smile, acknowledge, and then stare back
• 41:24
  Speaker 1: like that's okay. But to look at just to fucking
• 41:27
  Speaker 1: stare at a kid like it's creepy. You know. Sure,
• 41:30
  Speaker 1: yes she's different and that's okay, but everybody's a little
• 41:32
  Speaker 1: bit different. But yeah, we sir, Alex particularly, it's it's
• 41:36
  Speaker 1: a trigger point when people just.
• 41:38
  Speaker 4: Like, yeah, I think as an adult, like we know,
• 41:42
  Speaker 4: like we both have toddlers and kids, and they they
• 41:45
  Speaker 4: don't know any better, and they're gonna stare and sometimes
• 41:47
  Speaker 4: they'll be very inquisitive.
• 41:49
  Speaker 1: Kids are okay, they.
• 41:50
  Speaker 4: Want to know as well because it's probably the first
• 41:52
  Speaker 4: time they've seen something like that. But as a fully
• 41:54
  Speaker 4: grown adult staring at a child for any reason whatsoever,
• 41:57
  Speaker 4: it's just fucking weird, and stop doing it.
• 42:01
  Speaker 1: I couldn't couldn't agree more. I think back to your
• 42:04
  Speaker 1: point about having kid toddlers that are inquisitive fucking come
• 42:07
  Speaker 1: up to hello, hi, like normalize that rather than making
• 42:12
  Speaker 1: the kid go, oh, that's a fucking weird, because then
• 42:14
  Speaker 1: the kid's going to go, oh, I don't want to
• 42:15
  Speaker 1: go near that, or that's a bit old, or what
• 42:16
  Speaker 1: the like. So Alex is trying with everything that she's
• 42:21
  Speaker 1: doing now is just trying to kind of like normalize
• 42:23
  Speaker 1: it a little bit more. And we're never going to
• 42:26
  Speaker 1: be the first one, we won't be the last. But
• 42:27
  Speaker 1: I think getting people to appreciate Frankie's who Frankie is,
• 42:32
  Speaker 1: but she's just a normal girl that wants to live
• 42:34
  Speaker 1: the same experience as that everybody else does is probably
• 42:37
  Speaker 1: the message that's that's come out of what Alex has
• 42:40
  Speaker 1: started to try and do. Originally, she was doing it
• 42:44
  Speaker 1: as a third person looking on our on our experience
• 42:48
  Speaker 1: so far, so our kind of used to put little
• 42:50
  Speaker 1: videos together of like our holiday. So she quite likes
• 42:52
  Speaker 1: that creative, so that's kind of what she does. And
• 42:55
  Speaker 1: when Frankie and all the stuff happened with Frank's we
• 42:57
  Speaker 1: kind of she pulled back a lot. And then and
• 43:00
  Speaker 1: then to kind of process and start the grief process,
• 43:03
  Speaker 1: she built herself a little video of looking back at
• 43:06
  Speaker 1: us from a third party.
• 43:08
  Speaker 2: That's how I found you, Yes, So she did that
• 43:13
  Speaker 2: to kind of help her grief process.
• 43:15
  Speaker 1: And then in saying that, she started getting messages from
• 43:18
  Speaker 1: other mothers or other dads that were saying, hey, like
• 43:21
  Speaker 1: you've put into words what we don't know how to do. Yeah,
• 43:24
  Speaker 1: and then so it's gone from her using that as
• 43:27
  Speaker 1: a grief piece to going well, actually, is there a
• 43:29
  Speaker 1: way that we can kind of normalize for us what
• 43:34
  Speaker 1: we're going through and also show others that are behind
• 43:39
  Speaker 1: us in the same journey that things can be okay?
• 43:43
  Speaker 1: So yeah, So, like I said, from that point of
• 43:45
  Speaker 1: like people an adult staring, what we're trying to do
• 43:48
  Speaker 1: is just normalize who Frankie is and other kids that
• 43:51
  Speaker 1: are like Frankie, that are, like I said, just want
• 43:53
  Speaker 1: to live a fucking normal life like we all do,
• 43:55
  Speaker 1: and that have just drawn a short straw in life.
• 43:58
  Speaker 4: Because I can imagine during I mean thet like you're saying,
• 44:01
  Speaker 4: you're very open about you're learning this as well as
• 44:04
  Speaker 4: you go. I can imagine it can be really isolating
• 44:07
  Speaker 4: in moments, and there would be people and couples and
• 44:10
  Speaker 4: families that would be out there feeling isolated. But you're
• 44:14
  Speaker 4: giving them a bit of a voice here where it's
• 44:16
  Speaker 4: like you.
• 44:16
  Speaker 1: Know, and there's certainly moments of isolation. We're pretty fortunate
• 44:21
  Speaker 1: about the support crew that we have around us, and
• 44:24
  Speaker 1: as just an individual family, not talking about it holistically,
• 44:27
  Speaker 1: but yeah, there are certainly moments of complete isolation, right
• 44:31
  Speaker 1: like and even to our friendship group, like they've got
• 44:35
  Speaker 1: their their lives are so much more normal than ours,
• 44:37
  Speaker 1: and so relatability becomes like part of the isolation. Like
• 44:41
  Speaker 1: their kids are going to school, their kids have got
• 44:43
  Speaker 1: first first year school photos, or they're going to sport
• 44:46
  Speaker 1: and we're like, all right, sweet, we're going back to physio,
• 44:48
  Speaker 1: you know all we're going Like our life with Frank's
• 44:52
  Speaker 1: is very different to everybody else, and there is certainly moments,
• 44:56
  Speaker 1: I mean, outside of seeing a hospital room for three
• 44:58
  Speaker 1: or four months, when you're back in the real world,
• 45:01
  Speaker 1: there are certainly moments of isolation where you're just like,
• 45:04
  Speaker 1: I have nothing in common with my friends from a
• 45:07
  Speaker 1: from a parenting perspective, either my friends are beautiful, our
• 45:10
  Speaker 1: friends are amazing, but when it comes to the parenting
• 45:12
  Speaker 1: side of things, like we have nobody to sense check with.
• 45:15
  Speaker 1: It's not like, hey, did your kid walk today? Did
• 45:17
  Speaker 1: your kid pick their nose? Like, it's not like we
• 45:19
  Speaker 1: don't have that benchmark or that ability to go my
• 45:22
  Speaker 1: kid's twelve and he did it, Like we don't have that.
• 45:25
  Speaker 2: Then how do you how do you digest that? And
• 45:29
  Speaker 2: I'm not letting you know, eat you inside.
• 45:31
  Speaker 1: I think you've got two choices. You either let it
• 45:33
  Speaker 1: consume me or you just say fuck it. We're on
• 45:35
  Speaker 1: a different path, and let's just write it and enjoy life.
• 45:38
  Speaker 1: Because I hate to say it, we're all going to
• 45:39
  Speaker 1: end up in the same place anyway, right, We're all
• 45:41
  Speaker 1: going to end up in a fucking box at some point.
• 45:43
  Speaker 1: So let's just make the most of what we've got,
• 45:45
  Speaker 1: because if you don't, like, you're just going to chew
• 45:48
  Speaker 1: yourself up and you're going to isolate. And the world's
• 45:50
  Speaker 1: a beautiful place, Like there is so much beauty in
• 45:53
  Speaker 1: the world that I'm sure there are moments where people
• 45:56
  Speaker 1: fucking stare, but like that happens to everybody. But yeah,
• 45:59
  Speaker 1: like I said, I I think it's more that compare
• 46:03
  Speaker 1: comparing ourselves. I mean, comparison in anything is the root
• 46:07
  Speaker 1: of evil, right, Like if you compare your life to
• 46:08
  Speaker 1: somebody else's and there they're chapter fifty to your chapter one,
• 46:12
  Speaker 1: we're going to steal nothing on. So if we do that,
• 46:16
  Speaker 1: it's a spiral. And I don't allow myself to do that. Now,
• 46:19
  Speaker 1: Alex is pretty much the same, Like we don't just
• 46:22
  Speaker 1: like I said, you have moments. Fuck why us? This sucks?
• 46:24
  Speaker 1: What the fuck's going on?
• 46:25
  Speaker 3: And that'll reflect onto Frankie too.
• 46:27
  Speaker 4: Frankie'll be and she grows up, she'll see that as well,
• 46:30
  Speaker 4: and that's the sort of thing that she'll instilled in
• 46:32
  Speaker 4: her beliefs as well. You know, like, like there's so
• 46:36
  Speaker 4: many beautiful parts about life.
• 46:38
  Speaker 1: We try to give her the best life that we
• 46:40
  Speaker 1: possibly can. And I think it's I think for us
• 46:44
  Speaker 1: it's it's it's tough and we have to work really
• 46:48
  Speaker 1: fucking hard.
• 46:49
  Speaker 2: And I just say, when you say working hard, like
• 46:54
  Speaker 2: I complain a lot about parenting, right, I mean, we
• 46:57
  Speaker 2: have a whole podcast, and I know you didn't come
• 47:02
  Speaker 2: on here to tell your story and try sympathy from
• 47:04
  Speaker 2: anyone saying a sympathy. I sitting here, I am like,
• 47:08
  Speaker 2: holy fuck, it is amazing. Thank you what you guys
• 47:14
  Speaker 2: your situation is a lot harder than my own. And
• 47:17
  Speaker 2: how you guys can get through that, I'm like, I
• 47:20
  Speaker 2: got to fucking applaud you because I think it's incredible.
• 47:23
  Speaker 1: It's mostly my wife. I'm just a support character, to
• 47:25
  Speaker 1: be honest. She's she's the one that support plays a
• 47:27
  Speaker 1: big key. She's Batman, I'm Robin. But yeah, like I
• 47:33
  Speaker 1: said before, like we just we just do what we
• 47:35
  Speaker 1: can to ensure that we have the best life for
• 47:38
  Speaker 1: Frankie that we can. And to your point of saying,
• 47:41
  Speaker 1: like you camplain that, but that's okay, that's your life,
• 47:44
  Speaker 1: Like we're living our life. There's probably things in my
• 47:46
  Speaker 1: life that are really great too that you don't have. Like,
• 47:48
  Speaker 1: I don't know, but my premise is like you're only
• 47:51
  Speaker 1: walking your own fucking race, Like I'm not walking in
• 47:54
  Speaker 1: your shoes, You're not walking in mind. Comparison is the
• 47:56
  Speaker 1: root of the stealer of joy, right, it's the same premise, like,
• 48:00
  Speaker 1: don't feel sorry for us. We're doing the fucking best
• 48:03
  Speaker 1: that we can in our situation, and we probably have
• 48:06
  Speaker 1: some harder times than most, but for the majority, we're
• 48:11
  Speaker 1: a very happy, go lucky family and we do everything
• 48:15
  Speaker 1: that we possibly can to ensure that Frankie gets anything
• 48:19
  Speaker 1: and everything she possibly can as normalized as she possibly can.
• 48:23
  Speaker 2: To someone who doesn't know Frankie, how would you describe her?
• 48:27
  Speaker 1: I describe her as a four year old little red head,
• 48:29
  Speaker 1: and I don't know where the red hair comes from.
• 48:32
  Speaker 1: Who knows nothing but pure happiness, and I know that
• 48:36
  Speaker 1: that smile of hers and that squill is something that
• 48:39
  Speaker 1: really truly will melt the coldest of hearts. And as parents,
• 48:42
  Speaker 1: we try to instill that happiness in her, and we
• 48:46
  Speaker 1: managed to bring that out of her a lot. Sure
• 48:48
  Speaker 1: there are times where she's tested, and times and she's tired,
• 48:51
  Speaker 1: and times we're tested and tired as parents, But on
• 48:54
  Speaker 1: the whole, she is by far the happiest child that
• 48:58
  Speaker 1: I have ever come across, and even with my friends, like,
• 49:01
  Speaker 1: I've never seen a kid that's happy than Frankie. And
• 49:04
  Speaker 1: and that's a testament probably more to Alex and myself.
• 49:07
  Speaker 1: If I can rub myself on the back of a.
• 49:09
  Speaker 2: Little bit, please let us rub it. Thank you please.
• 49:12
  Speaker 1: But yeah, like I said, she's We work so hard
• 49:16
  Speaker 1: to ensure that she truly is the happiest little kid,
• 49:19
  Speaker 1: and we give her every possible experience that she deserves.
• 49:22
  Speaker 1: And that smile every morning, and that laugh at every
• 49:26
  Speaker 1: night and that kiss good night is something that I'll
• 49:29
  Speaker 1: truly cherish the rest of my life.
• 49:30
  Speaker 2: I loved watching all the little milestones like this is
• 49:33
  Speaker 2: the video. The first one I saw of you guys
• 49:35
  Speaker 2: and your family was when it was on the baby monitor.
• 49:37
  Speaker 2: It sounds very voyeuristic, super boyrasic, but now it seems
• 49:40
  Speaker 2: to work. It was you coming into the room and
• 49:44
  Speaker 2: just how happy Frankie was knowing that you were there
• 49:47
  Speaker 2: in bed next to her. I was like, oh, this
• 49:49
  Speaker 2: is beautiful.
• 49:54
  Speaker 1: Yeah, she senses us, and obviously, like I said, she
• 50:09
  Speaker 1: can't she can't see, and I think that's her. The
• 50:12
  Speaker 1: hard part about that is that the eyes are fine.
• 50:15
  Speaker 1: It's the injury or the brain that's not processing the imagery.
• 50:19
  Speaker 1: So all the hardway's fine. It's like the software's got
• 50:22
  Speaker 1: a glitch's effectively probably the easiest way to describe the eyesight.
• 50:25
  Speaker 1: But yeah, her touch, her touch and smell and sound
• 50:29
  Speaker 1: is is really warming and she knows, she knows who's
• 50:32
  Speaker 1: in the room. And it's funny I said before about
• 50:35
  Speaker 1: how how Frankie doesn't like being put on show. Like
• 50:37
  Speaker 1: Alex will like, we'll be doing something and Alex will
• 50:40
  Speaker 1: obviously hit a milestone whatever and pull the camera out
• 50:42
  Speaker 1: to film because that's what parents do, and Frankie will
• 50:45
  Speaker 1: just stop.
• 50:46
  Speaker 3: She just stop, or she'll just like my kids.
• 50:48
  Speaker 1: Do that the same premise. But she like the fact
• 50:55
  Speaker 1: that she can't see, but she.
• 50:56
  Speaker 2: I don't know, she just knows.
• 50:58
  Speaker 1: Camera will come out. Maybe it's Alex goes quite rather
• 51:00
  Speaker 1: than who knows what it is. But she does those
• 51:04
  Speaker 1: types of things where the camera will come out and
• 51:06
  Speaker 1: she will just stop. She'll just stop doing whatever it
• 51:08
  Speaker 1: is that she was doing. And like I said, we're
• 51:10
  Speaker 1: kind of quite for this part. But the camera, because
• 51:13
  Speaker 1: you want to record and share with the fan what
• 51:18
  Speaker 1: the camera down. We have a baby monitor that most
• 51:21
  Speaker 1: people do and I think probably the whole way through,
• 51:23
  Speaker 1: but for Frankie, because she can't see and she's nonverbal,
• 51:26
  Speaker 1: you don't know when she's awake, asleep, whatever it may be.
• 51:29
  Speaker 1: And only until probably two or three weeks ago, she
• 51:33
  Speaker 1: was co sleeping with Alex And it's only now in
• 51:36
  Speaker 1: the last three weeks that I've managed to be able
• 51:38
  Speaker 1: to put Frankie to bed. But that camera was always
• 51:40
  Speaker 1: there because she was having midday naps and we have
• 51:43
  Speaker 1: two white noise machines on in the house, which is
• 51:45
  Speaker 1: now I can't sleep with that white noise, but you
• 51:49
  Speaker 1: can't hear you can't hear her, So that was obviously
• 51:52
  Speaker 1: used just to kind of monitor her, which is the
• 51:54
  Speaker 1: point of them. But it's able to have captured a
• 51:57
  Speaker 1: couple of really beautiful moments between both myself and Frankie,
• 52:00
  Speaker 1: Alex and Frankie, and to be able to share that
• 52:03
  Speaker 1: and show that she has love and kind of show
• 52:06
  Speaker 1: her in a different light is a really nice thing.
• 52:09
  Speaker 4: And you're also going to have those forever, right, And
• 52:12
  Speaker 4: that's I mean, one of the perks of modern day parenting.
• 52:15
  Speaker 4: Now I'm not rummaging through my NaN's house to phone
• 52:18
  Speaker 4: photos of me.
• 52:19
  Speaker 3: I can't get away from all the shit. It's literally
• 52:23
  Speaker 3: I just lit up there and as a kid there,
• 52:25
  Speaker 3: So like that's the thing.
• 52:26
  Speaker 4: You're going to look back on that sort of stuff,
• 52:27
  Speaker 4: and same with Frankie is going to look back on
• 52:29
  Speaker 4: that sort of stuff and you guys will talk about.
• 52:31
  Speaker 3: It and be a core memory, which is amazing.
• 52:34
  Speaker 1: And I think, like I said before, we're just here
• 52:37
  Speaker 1: to show others that there is hope, even when you
• 52:39
  Speaker 1: don't think that there is hope, Like we don't have
• 52:42
  Speaker 1: like I said, we don't have any expectations on her.
• 52:44
  Speaker 1: And there are families that we hear about that are
• 52:47
  Speaker 1: in really die straight and our little piece of happiness
• 52:52
  Speaker 1: shows them that there is potential and strength. And so
• 52:56
  Speaker 1: that's why we do what we do.
• 52:58
  Speaker 2: And we spoke about it really briefly before we started recording.
• 53:02
  Speaker 2: But what does falling pregnant again look like for you guys?
• 53:05
  Speaker 1: We were very fortunate to have fallen pregnant again in
• 53:10
  Speaker 1: September of last year, and we naturally conceived triplets, which
• 53:17
  Speaker 1: was probably a wild ride in itself. We found when
• 53:21
  Speaker 1: knew Alex was pregnant, but I'd had a trip book
• 53:23
  Speaker 1: with my cousin to go away and then I was
• 53:27
  Speaker 1: going to the obst atrician and found out we were
• 53:31
  Speaker 1: having triplets, which was fucking wilde So I'm on the
• 53:33
  Speaker 1: outside of the world on FaceTime finding out that we're
• 53:37
  Speaker 1: having triplets, which was super surreal and naturally conceived, not
• 53:40
  Speaker 1: ivfor their natural self. It was an identical pair and
• 53:43
  Speaker 1: let's call it a spare, I know, that's probably the
• 53:45
  Speaker 1: worst way to say. Effectively, it was an egg that
• 53:48
  Speaker 1: split and a single singleton, and given Alex's history of
• 53:53
  Speaker 1: birth and obviously cervical and continent in competence, the doctor's
• 53:59
  Speaker 1: highly suggested that we reduced from three children to one,
• 54:03
  Speaker 1: which was pretty heartbreaking in itself. Yeah, so we did that,
• 54:07
  Speaker 1: which was at about twelve weeks, which is a bit. Effectively,
• 54:09
  Speaker 1: we had to choose to terminate the twins at about
• 54:13
  Speaker 1: twelve or thirteen weeks, which was super tough in itself,
• 54:15
  Speaker 1: but given imagine, but given Alex's history, we didn't really
• 54:20
  Speaker 1: have a choice. It was like, you're either going to
• 54:22
  Speaker 1: go to twelve or fourteen weeks Alexi is servis gonna
• 54:25
  Speaker 1: give out and then you lose all of them, or
• 54:28
  Speaker 1: you give one a good fighting chance. Alex has a
• 54:31
  Speaker 1: shortened cervix because she had an operation when she was
• 54:33
  Speaker 1: a little bit younger, and what happened was they had
• 54:35
  Speaker 1: they had and I'm not she should be here explaining this,
• 54:38
  Speaker 1: but effectively the operation reduced the length of a cervix,
• 54:42
  Speaker 1: and that's kind of what's caused in the first instance,
• 54:45
  Speaker 1: the shortened cervix. But I think the way that Frankie
• 54:48
  Speaker 1: was delivered has caused the more incompetence of the cervix
• 54:51
  Speaker 1: going forward. I'm not a medical expert and they haven't
• 54:54
  Speaker 1: said that for sure, but that's just the way that
• 54:56
  Speaker 1: we think it's transpired. And so we got to about
• 55:00
  Speaker 1: eighteen weeks and the obstetrician said, we need to put
• 55:02
  Speaker 1: a cervical surclag in which is effectively they put it
• 55:04
  Speaker 1: asleep and they basically stitch the cervix closed in the
• 55:09
  Speaker 1: hope that the pressure of the baby will and the
• 55:11
  Speaker 1: stitch will keep the cervix closed. But that stitch failed
• 55:14
  Speaker 1: at twenty weeks and we had to birth, well I did.
• 55:19
  Speaker 1: Alex had to birth the third triplet at twenty weeks,
• 55:24
  Speaker 1: which was again probably super tough, and I think if
• 55:27
  Speaker 1: that was its standalone experience, we would have found that
• 55:30
  Speaker 1: a lot harder than everything else that had transpired. I
• 55:32
  Speaker 1: think that is its own incident. Is awfully tough and
• 55:36
  Speaker 1: awfully difficult, and pregnancy lost in any shape or form
• 55:39
  Speaker 1: where that's one week or at forty weeks, it's fucking awful.
• 55:43
  Speaker 1: But given our life and our circumstances, it became just
• 55:46
  Speaker 1: another part of the journey. But the hard part was
• 55:49
  Speaker 1: Alex literally birthed a little child, actually birthed a little baby,
• 55:53
  Speaker 1: which wouldn't have been much bigger than a bigger than
• 55:55
  Speaker 1: like a Barbie doll, nails, fingernails, like, everything fully formed,
• 56:01
  Speaker 1: which was super difficult. I mean I had to cut
• 56:03
  Speaker 1: the umbilical cord right like literally in the room birth,
• 56:06
  Speaker 1: which was tough, and the baby's due dates was today,
• 56:10
  Speaker 1: which was which is kind of I don't know whether
• 56:12
  Speaker 1: that's like good, bad, indifferent, but it's just kind of
• 56:15
  Speaker 1: funny that we've ended up here today talking about this
• 56:18
  Speaker 1: when this is the day that we were meant to
• 56:20
  Speaker 1: be bringing three more three more kids into the world.
• 56:23
  Speaker 4: And we appreciate so much you coming in and I think,
• 56:25
  Speaker 4: I mean a tough, tough day, and I'm trying to like,
• 56:31
  Speaker 4: like I said, this.
• 56:31
  Speaker 1: Is like a fictional story, right, and I doesn't even
• 56:34
  Speaker 1: feel like looking back at it now, it doesn't feel real.
• 56:37
  Speaker 2: Yeah, the level of grief that you guys as a
• 56:41
  Speaker 2: couple of had to go through. And so do you
• 56:43
  Speaker 2: think that you and Alex will still push your head
• 56:45
  Speaker 2: with trying to feel pregnant again.
• 56:47
  Speaker 1: So yeah, so we've we're doing a couple of things
• 56:50
  Speaker 1: at the moment. We were in Melbourne last week to
• 56:52
  Speaker 1: get a thing called an abdominal sur class, which what
• 56:55
  Speaker 1: that is is it's a keyhole procedure where they put
• 56:59
  Speaker 1: in a stitch kind of at the top of the
• 57:01
  Speaker 1: cervix rather than at the bottom, so not through the vaginal,
• 57:03
  Speaker 1: which is what happened the first time, so it's effectively
• 57:05
  Speaker 1: at the top of the or the bottom of the
• 57:06
  Speaker 1: uterus or the top of the cervix, and so that
• 57:09
  Speaker 1: seems to be like it has a very very very
• 57:12
  Speaker 1: high success rate, and that's something that a woman can
• 57:15
  Speaker 1: if they wish, keep in for life, so you can
• 57:18
  Speaker 1: fall pregnant with it, you can have it till the
• 57:20
  Speaker 1: day you die. If you obviously want it out, you
• 57:22
  Speaker 1: to do what you need to do. I'm not the
• 57:23
  Speaker 1: medical expert, but effectively, it's just in there. It's like
• 57:27
  Speaker 1: an insurance policy, so when you do fall pregnant, there
• 57:30
  Speaker 1: is something that's there that should hopefully catch the baby.
• 57:32
  Speaker 1: And from all accounts, it's quite successful in terms of
• 57:37
  Speaker 1: being able to hold women who have an incompetent cervix.
• 57:40
  Speaker 1: So yeah, so we're doing that and we're also doing
• 57:42
  Speaker 1: embryo retrieval. Like we said, we don't have an issue
• 57:45
  Speaker 1: falling pregnant. It's obviously alex is getting a little bit
• 57:48
  Speaker 1: older and the body clock is ticking for her, and
• 57:51
  Speaker 1: so we're just doing some embryos to be able to
• 57:55
  Speaker 1: be the one if we're fall pregnant again. Naturally in
• 57:59
  Speaker 1: the circlash holds if we choose to have another child,
• 58:01
  Speaker 1: at least there's eggs that are ready to go, or
• 58:03
  Speaker 1: sorry embreads that are ready to go, or if we're unfortunate,
• 58:06
  Speaker 1: then we'll probably look to go down the surrogacy path,
• 58:08
  Speaker 1: which is a whole nother fucking gamut to itself. And
• 58:11
  Speaker 1: I'm really hoping that the surclage is what holds, and
• 58:14
  Speaker 1: it's seeming like from all accounts it's the right trajectory
• 58:17
  Speaker 1: or the right path that we're going down. So so yeah,
• 58:19
  Speaker 1: that's probably our next step, and hopefully sometime in the
• 58:24
  Speaker 1: near future we are able to bring another baby home
• 58:26
  Speaker 1: in probably better circumstances than the last few, the last
• 58:31
  Speaker 1: four or five years that we've had.
• 58:32
  Speaker 2: So like, it's really easy for me to think, oh,
• 58:35
  Speaker 2: we're all on the same path, and everyone's parenting journey
• 58:37
  Speaker 2: is pretty much similar and yours is wildly different. And
• 58:41
  Speaker 2: I'm like, just the strength that you guys have had
• 58:44
  Speaker 2: to get to where you are now, knowing what you've
• 58:45
  Speaker 2: gone through, it's fucking amazing.
• 58:48
  Speaker 1: Thank you. But I like, I think anybody I would think,
• 58:52
  Speaker 1: or the majority of people I think would then would
• 58:54
  Speaker 1: do what we've had to do. You don't have an alternative,
• 58:56
  Speaker 1: Like you're a parent, you choose if you willingly become
• 58:59
  Speaker 1: a parent. It's like anything you you have, you've got
• 59:02
  Speaker 1: to see it through. I think that's you got to
• 59:04
  Speaker 1: fight for it. You've got one hundred percent, right like
• 59:06
  Speaker 1: And maybe I can harp on this like you obviously
• 59:08
  Speaker 1: your journey to sobriety, right like you, you've got to
• 59:11
  Speaker 1: fight for the things that you want. And obviously your
• 59:13
  Speaker 1: children are far more important than the outcol for you.
• 59:15
  Speaker 1: And I think that that's a super strong point because
• 59:17
  Speaker 1: I'm sure what you're going through is fucking not easy either,
• 59:19
  Speaker 1: and that's your journey, right like I'm saying, I've got
• 59:21
  Speaker 1: my child is my difficult part. Obviously you've got your
• 59:24
  Speaker 1: sobriety piece. Which hats off to you for thanks so
• 59:27
  Speaker 1: much for doing for doing what you're doing.
• 59:29
  Speaker 4: And it's a tessment to you, guys with how much
• 59:31
  Speaker 4: you know, how much you're putting in and how much
• 59:33
  Speaker 4: you're fighting and and like you're you're enjoying the moments
• 59:37
  Speaker 4: that you guys have on your journey where you can
• 59:39
  Speaker 4: and and like you said, like that she's exceeding, you know,
• 59:43
  Speaker 4: these milestones that doctors have said that she's exceeding.
• 59:46
  Speaker 3: And it just must feel your heart too to hear
• 59:48
  Speaker 3: that it does.
• 59:49
  Speaker 1: It certainly gives us. It gives us hope, We get
• 59:51
  Speaker 1: us hope for the future. But I think my personality
• 59:55
  Speaker 1: won't allow me if it's still, and my personality won't
• 59:57
  Speaker 1: allow her to be locked away kind of seems to
• 1:00:01
  Speaker 1: happen to some people in our space, which we hear
• 1:00:03
  Speaker 1: some pretty horrible stories. But yeah, I can't sit still
• 1:00:07
  Speaker 1: for a minute, and I'm surprised that I'm still sitting
• 1:00:09
  Speaker 1: here without bouncing around the walls. But yeah, like I
• 1:00:12
  Speaker 1: want to see the world and I want to experience
• 1:00:14
  Speaker 1: the world, and I have the ability, and we have
• 1:00:16
  Speaker 1: the ability to give Frankie that, and we're going to
• 1:00:19
  Speaker 1: do that for as fucking long as we can because
• 1:00:22
  Speaker 1: it's not, like I said, she just deserves as much
• 1:00:24
  Speaker 1: as everybody else, sure, and to be honest, maybe even more,
• 1:00:26
  Speaker 1: because she's drawing a fucking short straw, you know, like
• 1:00:29
  Speaker 1: her life's not not as fair as everybody else's, and
• 1:00:31
  Speaker 1: that poor little thing. She works her hard out to
• 1:00:34
  Speaker 1: ensure that she maximizes what she can get out of life,
• 1:00:37
  Speaker 1: and as parents, we push her. But yeah, our job
• 1:00:40
  Speaker 1: is to fill her fill her life with joy and
• 1:00:43
  Speaker 1: happiness as best that we possibly can and make sure
• 1:00:45
  Speaker 1: that she's surrounded by love, because at the end of
• 1:00:47
  Speaker 1: the day, like I said, we're all going to go
• 1:00:48
  Speaker 1: to the same place, so let's just fucking enjoy the
• 1:00:50
  Speaker 1: ride while we're here.
• 1:00:52
  Speaker 2: Yeah, I thought you nailed. I was talking about celebrating
• 1:00:55
  Speaker 2: the winds because if I'm being completely honest, knowing you
• 1:01:00
  Speaker 2: know what diagnosis you've had with Frankie, part of me
• 1:01:03
  Speaker 2: wants to really grieve for you, and then there is
• 1:01:07
  Speaker 2: that element, but at the same time, watching you guys
• 1:01:10
  Speaker 2: celebrate those wins is so important for me to understand
• 1:01:13
  Speaker 2: your situation more, of course.
• 1:01:14
  Speaker 1: And I think we will always grieve, but we will
• 1:01:17
  Speaker 1: grieve to an extent the life that you envisioned rather
• 1:01:20
  Speaker 1: than what other people have, I think is what it is.
• 1:01:22
  Speaker 1: Like you said when one of the earlier questions was
• 1:01:24
  Speaker 1: around growing up, when did you know you wanted to
• 1:01:27
  Speaker 1: be a parent? I think, like I said, you always
• 1:01:28
  Speaker 1: wanted to be a parent. You always wanted to be
• 1:01:29
  Speaker 1: standing on the sideline cheering your kid on and yelling
• 1:01:32
  Speaker 1: and letting up them for doing something wrong and having
• 1:01:34
  Speaker 1: those moments, so that grief will be constant. And I
• 1:01:38
  Speaker 1: think as time goes on, and the more we kind
• 1:01:42
  Speaker 1: of realize where Frankie's at and her limitations and whatever
• 1:01:45
  Speaker 1: else comes, we know that there's more grief ahead, which
• 1:01:48
  Speaker 1: is probably the harder bit. It's like, when's the fucking
• 1:01:51
  Speaker 1: next problem going to happen? You know, Like when is
• 1:01:53
  Speaker 1: she going to relapse and have another seizure? Like we
• 1:01:56
  Speaker 1: don't know her life span, Like is she going to
• 1:01:57
  Speaker 1: outlive us or we're going to outlive her? Like we
• 1:01:59
  Speaker 1: don't know those types of things, and so like, you can't.
• 1:02:03
  Speaker 1: No one can have a future plans. You can walk
• 1:02:04
  Speaker 1: out of here and get hit by a bus and
• 1:02:06
  Speaker 1: it's probably a little bit more. But and there's a
• 1:02:07
  Speaker 1: bit of morbidity in what we're talking about, But you
• 1:02:10
  Speaker 1: can't future plan, all right, my kid's going to go
• 1:02:12
  Speaker 1: to school. There's no like traditional timeline of what you
• 1:02:16
  Speaker 1: expected as a parent, like I'm going to grow up
• 1:02:18
  Speaker 1: and I'm going to have a kid. They're going to
• 1:02:19
  Speaker 1: go to school at five and so on and so forth,
• 1:02:21
  Speaker 1: and that traditional lineal line that most families go through
• 1:02:26
  Speaker 1: with trial and tribulation. We don't have a lineal line.
• 1:02:29
  Speaker 1: We don't fucking know what tomorrow is going to bring us,
• 1:02:32
  Speaker 1: And so We tried a plan as best we can.
• 1:02:35
  Speaker 1: But yeah, like I said, we're just not on a
• 1:02:36
  Speaker 1: linear line, like everybody not on a lineal line. But
• 1:02:40
  Speaker 1: you know, most people have a traditional line that they've
• 1:02:42
  Speaker 1: got traditory that's probably a better word. So we don't
• 1:02:45
  Speaker 1: have that, and so yeah, we're trying to kind of
• 1:02:47
  Speaker 1: come to terms with that, which is probably the grief
• 1:02:50
  Speaker 1: bit that still sits behind at all times. Yeah, it's
• 1:02:55
  Speaker 1: not a comparison of others. It's a why didn't we
• 1:02:59
  Speaker 1: get what we thought we were going to get right?
• 1:03:02
  Speaker 1: And how do we fulfill that? But we just want
• 1:03:05
  Speaker 1: to show that Frankie is so loved at Frankie, that
• 1:03:07
  Speaker 1: there is so much love in this world that people
• 1:03:09
  Speaker 1: are really happy to be involved in her life. People
• 1:03:13
  Speaker 1: behind us are coming through and seeing that there is
• 1:03:15
  Speaker 1: hope and opportunity for them and their children. And the
• 1:03:19
  Speaker 1: questions like we have all this assistive technology that we
• 1:03:22
  Speaker 1: didn't know about before we started deep diving, and now
• 1:03:25
  Speaker 1: there are parents asking us, hey, where did you get that?
• 1:03:27
  Speaker 1: Where did you get this? And so it's kind of
• 1:03:29
  Speaker 1: become an information.
• 1:03:30
  Speaker 2: We would like to think it's a community.
• 1:03:31
  Speaker 1: Correct, it's a community, and we'd like to think that
• 1:03:34
  Speaker 1: what we're doing is we're helping some other parents who
• 1:03:37
  Speaker 1: are on the behind us on the journey come through
• 1:03:40
  Speaker 1: and really know that there is hope and that they
• 1:03:43
  Speaker 1: can love their child and things will be okay. And
• 1:03:46
  Speaker 1: we really want to spread joy, love and happiness and
• 1:03:49
  Speaker 1: normalize what's happening with Frankie.
• 1:03:50
  Speaker 4: Yeah, from all this shit on the internet, like guys
• 1:03:53
  Speaker 4: putting tails on the head and pretending to be their wives,
• 1:03:55
  Speaker 4: there are small there are small pockets that are very inspired,
• 1:03:59
  Speaker 4: very inspiring, and also like, yeah, it builds this community
• 1:04:04
  Speaker 4: that It's funny when you go onto videos like yours
• 1:04:07
  Speaker 4: and other accounts that pop up, and you go into
• 1:04:09
  Speaker 4: the comments and you're like, Okay, what am I going
• 1:04:11
  Speaker 4: to expect here? And it's a lot of people getting
• 1:04:13
  Speaker 4: little tips from each other.
• 1:04:15
  Speaker 3: It's amazing. And then also being like this is right.
• 1:04:18
  Speaker 3: I'm on the right here.
• 1:04:25
  Speaker 2: At the moment. You're not working, Alex, your wife's not working.
• 1:04:29
  Speaker 2: I'm wearying some Frankie merch. You're wearing the Frankie hat.
• 1:04:32
  Speaker 3: Yeah, I've got one.
• 1:04:33
  Speaker 2: With the money raised from the selling of the merch,
• 1:04:35
  Speaker 2: where does that go?
• 1:04:36
  Speaker 1: So every year or not every year, probably every other
• 1:04:39
  Speaker 1: year we've done a drop, so we've done a hat,
• 1:04:41
  Speaker 1: a set of hats. We've done these jumpers now with
• 1:04:43
  Speaker 1: the help of a friend of ours and we're doing
• 1:04:46
  Speaker 1: another one now. And what we did the first time
• 1:04:49
  Speaker 1: we just kind of donate to somebody who has some
• 1:04:52
  Speaker 1: sort of relationship to Frankie. So the first year we
• 1:04:55
  Speaker 1: did the hats, we donated all all the proceeds to
• 1:04:58
  Speaker 1: Epilepsy Action Australia. They were really good to us when
• 1:05:02
  Speaker 1: everything kind of happened with the with the siezures and
• 1:05:04
  Speaker 1: they really exceptional to us as a family and really
• 1:05:07
  Speaker 1: took care and brought us in, so we donated the
• 1:05:09
  Speaker 1: money to that. And then last year when we did
• 1:05:12
  Speaker 1: the jumpers, we did a donation to a company called Watability.
• 1:05:16
  Speaker 1: They basically like community at community outreach program. A friend
• 1:05:19
  Speaker 1: of our, Steve Dresl, that's his business.
• 1:05:21
  Speaker 4: The cafe that we go to near my place that
• 1:05:23
  Speaker 4: we also met vic. They have a lunch like once
• 1:05:26
  Speaker 4: a week with the Whatability guys in there, so.
• 1:05:28
  Speaker 3: I seem all the time they're doing really good stuff.
• 1:05:30
  Speaker 1: So they've got what Ability, good job they've got, they've
• 1:05:33
  Speaker 1: got a foundation outside of the actual operational business which
• 1:05:36
  Speaker 1: is to kind of like com committity outreach. And so
• 1:05:38
  Speaker 1: last time we donated to that and then yeah, we're
• 1:05:40
  Speaker 1: going to probably do another one this year. And I
• 1:05:43
  Speaker 1: think we don't know, we hadn't really even talking about
• 1:05:46
  Speaker 1: talked about between Alex and I where we're going to
• 1:05:49
  Speaker 1: donate the money. But yeah, like us, any money that
• 1:05:51
  Speaker 1: we make goes straight to whatever that charity.
• 1:05:54
  Speaker 2: This is a little presumptuous, but if you need any models.
• 1:05:57
  Speaker 1: Oh there'll be a few samples sent through. Thank you.
• 1:06:00
  Speaker 2: You let any way that we can support you. We
• 1:06:08
  Speaker 2: would love to help out you do, then.
• 1:06:11
  Speaker 3: Bring the calendars. Would you be happy to be in
• 1:06:14
  Speaker 3: budget smugglers.
• 1:06:16
  Speaker 1: I might need a sock, but you can borrow. Thank you.
• 1:06:20
  Speaker 2: We'll also put any links in the show notes as
• 1:06:22
  Speaker 2: well for where people can donate to help out, because
• 1:06:24
  Speaker 2: I think it's such a great cause. Thank you.
• 1:06:25
  Speaker 1: Like I said, yeah, we certainly we're not here to
• 1:06:28
  Speaker 1: make money from Frankie, that's not our job. Where our
• 1:06:30
  Speaker 1: job is to make sure that others can get looked
• 1:06:32
  Speaker 1: after that are on the same journey, and it's it's
• 1:06:35
  Speaker 1: certainly been a very challenging four and a half years,
• 1:06:37
  Speaker 1: and I think our path is probably only at the beginning.
• 1:06:40
  Speaker 1: I don't think it's going to get easier. I certainly
• 1:06:42
  Speaker 1: think it's going to get a fuck load harder as
• 1:06:45
  Speaker 1: she gets bigger and larger and grows into a full
• 1:06:48
  Speaker 1: adult human. And if she doesn't get mobile, which is
• 1:06:52
  Speaker 1: she's proved me wrong before, if she doesn't get mobile enough,
• 1:06:54
  Speaker 1: then I think we're in for a really tough, tough
• 1:06:58
  Speaker 1: life from that perspective, But like I said, where we
• 1:07:00
  Speaker 1: will do everything we can to ensure that she lives
• 1:07:05
  Speaker 1: the fullest, happiest and healthiest life and that she's known,
• 1:07:07
  Speaker 1: that she's been loved by everybody, and that we've tried
• 1:07:10
  Speaker 1: to normalize her situation so that we don't have those
• 1:07:14
  Speaker 1: types of people the stairs and the young kids going
• 1:07:16
  Speaker 1: what's that mummy like? And that's no slight on children,
• 1:07:20
  Speaker 1: because children are inquisitive and they go. But it's the
• 1:07:22
  Speaker 1: parents that can educate the kids on what that looks
• 1:07:26
  Speaker 1: like and to normalize something that is a little unnormal.
• 1:07:30
  Speaker 3: For sure, I.
• 1:07:31
  Speaker 2: Think Frankie is so incredibly lucky to have such amazing
• 1:07:34
  Speaker 2: parents like yourself and Alex, Thank you and that dude.
• 1:07:37
  Speaker 2: It really is so inspiring. I don't know if you
• 1:07:40
  Speaker 2: know what you do for other parents just by telling
• 1:07:43
  Speaker 2: a story. But it's incredible, and the fact that it's
• 1:07:47
  Speaker 2: your first podcast as well, I just want to say
• 1:07:49
  Speaker 2: thank you so much.
• 1:07:50
  Speaker 1: Thank you.
• 1:07:51
  Speaker 4: Yeah, I appreciate you coming in and tell us your story.
• 1:07:53
  Speaker 4: And we know that our community and whoever listens to us,
• 1:07:56
  Speaker 4: they're going to love this and.
• 1:07:58
  Speaker 2: The dots will rally behind you.
• 1:07:59
  Speaker 3: You do nothing but good thing, So keep it up
• 1:08:01
  Speaker 3: and we'll be watching.
• 1:08:02
  Speaker 4: We can't wait to see all the updates on Instagram
• 1:08:05
  Speaker 4: and everything.
• 1:08:05
  Speaker 3: And what's the hand? What's the hand? Do you have?
• 1:08:07
  Speaker 3: The handle? Off?
• 1:08:08
  Speaker 1: My heart? I actually don't know what it is because
• 1:08:09
  Speaker 1: I don't have I don't have it.
• 1:08:11
  Speaker 2: Come on, do you have it?
• 1:08:15
  Speaker 1: As I'm like, I think it's Alex Ray Underscore, but
• 1:08:19
  Speaker 1: it's w r A Y.
• 1:08:21
  Speaker 4: We'll pup it in the show notes anyway. But again,
• 1:08:24
  Speaker 4: thank you so much.
• 1:08:25
  Speaker 1: Thank you guys.
• 1:08:26
  Speaker 4: I think what gets me about Jackson is how positive
• 1:08:29
  Speaker 4: here is about their family situation and the message that
• 1:08:31
  Speaker 4: they want to put across to everyone else.
• 1:08:33
  Speaker 2: They are a family that has dealt with more trauma
• 1:08:36
  Speaker 2: than anyone deserves, but it is so inspiring. Their outlook
• 1:08:41
  Speaker 2: to Jackson to Alex and to Frankie, you guys are
• 1:08:43
  Speaker 2: doing such an incredible job.
• 1:08:44
  Speaker 3: Yeah, thank you Jackson for jumping on and spending some
• 1:08:46
  Speaker 3: time with us.
• 1:08:47
  Speaker 4: And if you've enjoyed this episode, please leave a review, subscribe,
• 1:08:50
  Speaker 4: or you can join us wear Matt.
• 1:08:51
  Speaker 2: On social media Two Doting Dads on Instagram, TikTok. There
• 1:08:55
  Speaker 2: is also the Facebook group and a little reminder as
• 1:08:58
  Speaker 2: well that we are now we have given producer Vic
• 1:09:01
  Speaker 2: a lot more work and we are doing long form
• 1:09:04
  Speaker 2: full episodes on YouTube. But if you are going to
• 1:09:07
  Speaker 2: watch that, you have to also listen to it, have
• 1:09:09
  Speaker 2: to also give us a comment and follow us as well.
• 1:09:12
  Speaker 2: You have a lot of homework to do, get to.
• 1:09:13
  Speaker 5: It right now and until next time, goodbye, bye guys.
• 1:09:34
  Speaker 2: Two Doting Dads podcast acknowledges the traditional custodians of country
• 1:09:38
  Speaker 2: throughout Australia and the connections to land, see and community.
• 1:09:42
  Speaker 4: We pay our respects to their elders past and present
• 1:09:44
  Speaker 4: and extend that respect to all Aboriginal and torrestraight onland.
• 1:09:47
  Speaker 3: The people's today. This episode was recorded on Gadigal Land