#238 Jackson Wray: The Dad Every Parent Can Learn From

Episode Transcript
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Speaker 1 (00:15):
Hash.

Speaker 2 (00:16):
This may surprise you.

Speaker 3 (00:17):
Nothing surprises me.

Speaker 2 (00:18):
But I scroll on social media quite a bit.

Speaker 3 (00:22):
I can hear that thumb clicking.

Speaker 2 (00:24):
Do you know what I clocked up? Guse how many
hours I had listen ready. There was one night recently
I was scrolling as I often do as I unwind
after the kids are gone to bed and I've had
my dinner in the kitchen is clean for the record,
and I came across a video where I was like,
holy shit, it brought me to tears.

Speaker 3 (00:42):
Unexpectedly those ones don't.

Speaker 2 (00:43):
I Like, one second I was watching someone mow the
lawn as before and after, and the next thing, I
was watching the most beautiful moment of a dad, Jackson Ray,
who was just waking up his daughter who was getting
up from a nap, and she was just so ecstatic
that herd was in the room. And what made it
even more special is the fact that their daughter, Frankie,

(01:05):
has a number of health issues, including cerebral palsy, she
is blind, and she also has epilepsy.

Speaker 3 (01:10):
Yes, Matt, it's a lot to take on.

Speaker 4 (01:12):
But her dad, Jackson, who is our guest today, he
uses positivity about their situation.

Speaker 2 (01:17):
For me, it's so important sometimes to hear other parents'
situations because it's so important for me to have perspective
on my parenting journey. There are so many little minor
frustrations that I have each day that I'm like, oh,
this is so hard. But when you talk to Jackson
and you start to understand what parenting looks like for
himself and his wife Alex, it is so inspiring to

(01:40):
look at how they tackle parenting and their outlook on
it as well.

Speaker 4 (01:43):
You can't help a smile, Matt when you see those
videos pop up and having Jackson in here. He is
such a legend. So please enjoy this episode.

Speaker 2 (01:50):
And look, it does get a little bit emotional at time,
so my advice is that you have some tissues on hand,
let's get into it. Welcome back to three Doting Dads.
I am Mattie Ja, I'm Ash, and I'm Jackson Ray
and this is a podcast all about parenting. It is
the good, it is the bad and the relatable. And
of course we have to say no advice will be
given by Ash and myself Jackson. However, loophole you can.

(02:13):
You are allowed to give advice. Thank you.

Speaker 1 (02:15):
I'm glad I got your blessing.

Speaker 4 (02:16):
We usually start this episode to figure out a little
bit about the man.

Speaker 3 (02:19):
And do you recall the most trouble you got in
as a child.

Speaker 1 (02:23):
I was probably quite a pretty good boy for the
majority of my time, but one I don't believe it.
I would a single mum good boy. But one time
I was on a football tour in New Zealand and
I was under age as well.

Speaker 2 (02:36):
And can I just ask quickly with AFL league or
union the union boy Union boys that they love rugby union.

Speaker 1 (02:46):
Before Johnny Wilkinson kicked those field goals, it was a
bit of yeah, it was a bit more fun. But yeah,
I was in New Zealand and obviously on a football
tour and bought some booze age and a couple of
the young fellas took off from the cops.

Speaker 2 (03:00):
Oh sugar. Yes.

Speaker 1 (03:01):
So I don't know what I'm meant to be saying
this and whether something I'm knocking on the door solicitors,
but yeah, it was certainly an experience in a time.

Speaker 2 (03:10):
Did you have a fake idea or how did you buy?

Speaker 1 (03:13):
No, I did not have a fake id.

Speaker 2 (03:14):
Yep, you just looked very old.

Speaker 1 (03:17):
I just looked old. That type of thing. I kind
of look like I do now, because what's your background?
My mother's side from Cyprus, in my father's side the
strain English.

Speaker 2 (03:25):
So you've got like a little bit older. I don't
want to say it.

Speaker 3 (03:30):
What are you saying?

Speaker 1 (03:32):
Wow?

Speaker 2 (03:32):
You look great for your age is what I'm trying.

Speaker 3 (03:34):
Wow do I look twenty?

Speaker 2 (03:37):
Charm, I don't believe anything.

Speaker 3 (03:40):
What is the legal age in New Zealand it's twelve?

Speaker 1 (03:43):
I thought, so yeah. Yeah. They were like, you don't
need IDA, what are you running cal My memory says
I didn't even ask for ID from memory, No you
would memory. My recollection is I didn't even get asked.
I think that I had one, but I definitely didn't
get asked.

Speaker 2 (03:57):
And then did you get in trouble? Did you run?
You stay?

Speaker 1 (03:59):
I didn't get the run. I bought back off of
others and then I went somewhere else and they got
caught drinking in the park and they did the run
off of the.

Speaker 2 (04:09):
Also, when you're young, it's one of those things that
like if you just stay put and pretend like you're
not doing anything naughty, the cops will just walk past
or drive by.

Speaker 3 (04:18):
Most of the time, or they'll just keep it out.

Speaker 2 (04:20):
But when you run the cops like, well, now we've
got to chase.

Speaker 1 (04:22):
It, it's like you've got a bolt. Yeah, I guess
flight or flight, right, So so those boys took off
and I got into.

Speaker 3 (04:29):
A lot of trouble okay from.

Speaker 1 (04:31):
Mum, dad, who school, school, Luckily not the police. Was
they kind of You're on a football tour and obviously
someone they're not real cops. You listen, you say what
you need to say. Conversation.

Speaker 3 (04:43):
I wait for that to come back.

Speaker 1 (04:45):
You're a bit of strife. But so school got me
in a bit of strife. Mum got me a bit
of strife. But yeah, I think from a I don't
know what happened legally from anything about it and little
kids at that point. So that was probably the one
and only time that I ever really flirted with the law.
Let's caught that.

Speaker 2 (05:00):
Wow, single mom as well, Jackson. What were you doing?

Speaker 3 (05:04):
Bad? Bad time?

Speaker 2 (05:05):
Sorry?

Speaker 1 (05:07):
Mom My mom was there too to probably protect me afterwards,
So I think I was all right.

Speaker 2 (05:11):
How did she pun a shot?

Speaker 1 (05:12):
I've got a very stern.

Speaker 3 (05:13):
Talking to that's pretty good. I go heap with a spoon.

Speaker 1 (05:16):
I had a stepfather who did those types of things.
But my mother was very stern to me, but not
in a very loving way.

Speaker 3 (05:22):
Rather than a was she like very stern?

Speaker 1 (05:26):
Do you think No, I just didn't want to disappoint
I think what it was it was more disappointing her,
given everything she'd done for me and given to me.
So it was more about disappointing her rather than a
fear of I guess violence, maybe like a spoon or
whatever it may be. So it was a little bit
more of that rather than yeah, like you're going to
get whacked for that. It was more like, fuck, I've
really fucked up and I've my mom's disappointed. And that

(05:48):
was probably where I was like, all right, a strife.

Speaker 2 (05:52):
I always think, how can I get to the point
where my kids respect me enough to not want to
disappoint me? I said that.

Speaker 3 (05:59):
Now he's laughing me. I'm like, I'm not angry. It
works better. It works better if you are we don't
respect you.

Speaker 1 (06:07):
The disappointed piece is obviously a lot scarier than the
than the smack run. I think, yeah, I think so,
And I think my mum probably gave me freedom and
said like I trust you, and if you fuck the trust,
and that's when you're in trouble, rather than going you
can't do this, or you must do this, or like
a control perspective, and I think that's probably that was instilled.
It was like, all right, well I've got the rope

(06:28):
and I've dropped myself with the rope to an extent,
and that was when I knew. I was like, Ah'm
in strife. But I think it's that it's that you
give the kid the leeway. I'm here, I'm giving advice
already with but it was like, yeah, I think it's given.
My mum was always like, I trust you, tell me
what you're doing. I'd rather know what's going on, and
I'd rather know everything and I won't be as angry
as if I find out from someone else. Well, that's

(06:50):
when the trust is broken. I think trust is probably
the thing that I had with my mum growing up.

Speaker 3 (06:55):
Yeah, that's good.

Speaker 2 (06:55):
I'm like locking this in mentally because it sounds so
counterintuitive to be like, I will give you the freedom.

Speaker 3 (07:00):
My kids had fucking exploit that.

Speaker 1 (07:03):
I think obviously that was as you grow older, right
of getting that teenagers. As a little kid, it was
probably a little bit different, But my recollections more of
my mum as I got into my teenage years and
making sure that I didn't disappoint her.

Speaker 2 (07:14):
Do you remember when, at what point you realize I
really want to be a dad have a family.

Speaker 3 (07:19):
It's a good question.

Speaker 1 (07:20):
I think I always knew I wanted to be a dad.
I just wasn't sure when I was ever going to
be ready to be a dad. Growing up, I was
always the one of my friend's like, you'd be the
best dad, Like that was kind of what I was
pumping my way for a little bit, pump away as
you're buying alcohol, rub my eg and off we go.

(07:41):
But yeah, I think as a kid growing up, you
kind of you always that was like the next step
in life, and that was a phase in life that
you wanted to get to. But I don't think there
was ever a moment where I went alright, it's time.
I think it was more it just kind of I
always knew that that was a path that i'd like
to have to have gone down. And then, yeah, obviously
it came along like about four and a half fod
years ago when with the birth Frankie.

Speaker 4 (08:01):
Can we just quick step back if you don't mind
me asking, Alex your partner.

Speaker 3 (08:04):
Yeah, where did you guys meet?

Speaker 1 (08:06):
We worked at Red Bull about twelve thirteen years ago,
probably something along a line. We formed a really fast
quick friendship, like we were both in part in relationships
outside of each other's beforehand, and then we were best
of friends for a long time before anything kind of transpired,
which I think, given our story, is probably really fitting.
The friendship is probably the foundation for what we have today,

(08:29):
given the trials that we've been kind of put under
with our life, which I'm sure we'll talk about in
a little while.

Speaker 2 (08:34):
Do you remember who raised it first, the prospect of
having kids.

Speaker 1 (08:38):
I can't recall. I think we probably both knew it
was a path to go down. I think Alex wanted
them a little bit sooner than I did, because body
clock women that type of thing. And I was kind
of in a position where I'd come out of a job,
moved to the US for a little while, came back,
started a new career, and so I wasn't in a
position financially to go, all right, let's have kids and

(08:59):
let's go. I think it was more once I found
myself in a little bit of a more stable position,
That's when I was like, all right now, it's time.
Now I can do it, and now I know that
when I'm bringing someone in this world, I can give
back as much as they take from me.

Speaker 2 (09:11):
Yeah. Do you remember how she told you she was pregnant?

Speaker 1 (09:14):
No, so, yeah, sorry, yes I do. But we tried
for a little while to fell pregnant and it didn't happen.

Speaker 3 (09:18):
I can.

Speaker 1 (09:19):
We ended up with cats because she was feeling a void,
and then we got rid of the cats and that
kind of that. I don't want to know how you
got rid of the cats.

Speaker 3 (09:25):
I don't want to know how.

Speaker 1 (09:27):
I think they're still alive there and there's somebody, some
of a very lovely woman took the two cats that
we had while we're living apartment living during COVID. But yeah,
so we tried for a baby, didn't have it, and
then Alex went and had an endometrisis like a laproscopies operation,
and then she fell pregnant with the chemical pregnancy that
first month after, which was like exciting for a minute,

(09:48):
and then obviously that you ride that wave up and down,
and then that happened, and then the following month we
tried again and she felt pregnant, which was pretty exciting.

Speaker 2 (09:56):
How did you feel ready?

Speaker 1 (09:57):
Then, yeah, I certainly felt ready. I think we knew
because we had a few attempts that didn't happen, Like obviously,
month to month you try and try, no nothing happened,
and then we had that month where it happened but
didn't happen after the operation and then when she felt pergant.
I think we were certainly ready for the baby at
that point.

Speaker 2 (10:13):
And during the journey of Alex being pregnant, all your
scans and tests, everything was showing up that things were
good or was so no.

Speaker 1 (10:21):
So good question. We did everything we possibly could, like
they give you the test, they asked you if you
want to do genetic screening, and all those types of things,
and we thought everything went really really well until Alex's
waters broke it thirty weeks.

Speaker 3 (10:32):
That's real early. Yeah.

Speaker 1 (10:34):
Yeah, so waters broke at thirty weeks, which was pretty
scary obviously because it was ten weeks to go. We
just finished our birthday class. Alex like perfect, I'm ready
to have a baby, and literally that night the water's broke,
which was not planned. And then they the doctors wanted
to keep the baby or I kept saying the baby,
but wanted to keep franking in. So basically Alex was
kept in hospital for five days when they basically injected

(10:56):
her with steroids for the child to kind of get
the lungs to go, because the lungs aren't developed at
thirty weeks, and a few other bits and pieces.

Speaker 2 (11:03):
So were they giving you a time frame of like,
we want to try and keep you in here.

Speaker 1 (11:06):
As long as possible, right, really? But it was really
it's a very surreal experience. And I think before I
came to see you guys, I was talking to Alex
and kind of looking back at like everything that's happened
and trying to remember a lot of it because you
kind of start to compartmentalize it and go, fuck, I
just deal with it later. I'll deal with that later,
which I think most people do do.

Speaker 2 (11:25):
But sometimes with Marley, I'll be talking to someone and
with my wife Laura, and she'll say part to the
birth that I'm like, did that happen?

Speaker 1 (11:34):
And she's like, yeah, I remember, you just forget. So
we spent three or four days from memory in hospital
trying to keet the baby in because her waters were broken,
and apparently because as long as Alex was still producing
fluid the baby could stay in. And then at I
think day five or day six, they sent after the
water's broke, they sent us home like you're okay, everything's

(11:55):
going to be all right, just stay relaxed and whatever else.
And then that night Alex is like, don't feel very good.
I think I'm going to go to sleep, And I
was like, are you sure you think you might be
in labor and she's like no, no, no, I'm okay, I'm okay.
So it's probably like eight o'clock and night I was like, no,
we're going to go to the hospital. So we get
to the hospital and they're like, yeah, you're you're in labor.
And we were at We're meant to be delivered at

(12:16):
Prince of Well's Hospital, and halfway through labor, they said, oh,
your baby's too small. We're going to have to send
you to RPA. So in the middle of labor, they
put Alex and Frankie, who was obviously still in the stomach,
into an ambulance and took off and I had to
drive myself to RPA. That like probably like eleven or
eleventh thirty at night.

Speaker 3 (12:35):
Was this in the middle of COVID too.

Speaker 1 (12:36):
It was. It was April, so kind of COVID had finished,
but it was like at the end of that, like
everyone was still wearing masks. There was still social distancing.
It wasn't full lockdown. But when we got to the hospital,
had to do swab tests all that type of stuff.

Speaker 2 (12:49):
And how are you feeling? Driving separately?

Speaker 1 (12:53):
Fucking lost ass. I was really like, what the fuck
is going on? Like quind of surreal, and some little
fuck is on the way to the hospital too, Yeah,
these little f anyways, that's that's neither in nor there,
but it was just kind of yeah, fucking days really.
So we drive, so we get to RPA. Everything's kind

(13:14):
of okay, ours dilating and things seem to be going
I guess to plan other than the fact that Frankie's
are going to be a premium and we kind of
accepted that. And then so that night kind of rolls
through till about three o'clock in the morning, and at
that point I was lying there getting ready. She's dilated

(13:34):
and the on call OB hadn't arrived yet. But what
happened was she ended up having a card prolapse from
what we know, which means effectively that the umbilical cord
comes out before Frankie's head. So the umbilical cord obviously
is the oxygen supply, and the umbilical cord pushes the
head pushed on the oxygen supply, and so we had
to have like an like an emergency emergency cesarian. She

(13:57):
basically means, and I think I listened to your pod
the other day where an emergency if I'm not mistaken
from a breach. We didn't even get a minute. Basically,
button on the wall, yeah, everyone in.

Speaker 4 (14:07):
They come out of nowhere too, about of fucking nowhere,
but everyone.

Speaker 2 (14:10):
Like the nurse presses them like.

Speaker 1 (14:13):
So the ob wasn't there because our ab couldn't deliver
because rob wasn't registered at RPA on Coob wasn't there
at the time either because they hadn't got there yet.
And so there was a registrar on the registrar who
was there. The REGISTI doctor was feeling around and then
the nurse checked as well, and they caught the nurse's nightmare.
So effectively, what happened was the nurse said, pressed the button.
They pressed the green button on the wall or the

(14:34):
red button or whatever color it is. Everyone rushed in,
the nurse pretty much pushed her hand up Alex's vagina,
pushed the baby's head back up to get the pressure
off the umbilical cord, and then yeah, they're all everyone's
in the nurse case ships out. Look at me, Look
at me, Look at me. I'm standing like a fucking ghost.

Speaker 3 (14:51):
I'm going, what.

Speaker 1 (14:52):
The fuck is going on? Someone tell me what's going on?
And then she gets rushed out on all fours, nurse
obviously doing what she's doing, and I'm standing in this
white room. No one's around, and it's just dead silence,
and I'm like, what the fuck is going on?

Speaker 2 (15:06):
Like where the fuck?

Speaker 4 (15:08):
They're like a pit crewe they come out of nowhere.
And then all of a sudden, I'm like that you're up, you're.

Speaker 1 (15:13):
Out, and they're all gone.

Speaker 2 (15:14):
And I think, from what I know, obviously in that moment,
Alex is a priority. Yeah, But does anyone tap you
on the shoulder and say, hey, just so you know,
this is no?

Speaker 1 (15:25):
And I think because we had that birth in class
that morning and they were talking about forcep deliveries and
vacuums and all these types of things, and I was like, Oh,
they're using forceps and the lady's like, no, honey, and
then they just took off, and I was standing in
this room by myself, and I'm going like like nobody's around,
Like I'm literally in a room probably the same size
as this white walls, just standing there going what the

(15:46):
fuck haven't slept as we all know, like your delirious.
And then yeah, some lady probably about seven or eight
minutes later comes back and goes, congratulations you've had a
little kid.

Speaker 3 (15:55):
Wow.

Speaker 2 (15:56):
So fuck.

Speaker 3 (16:00):
No, it's okay.

Speaker 1 (16:01):
John to cry.

Speaker 2 (16:04):
I'm a fucking cry. So like, if there's a place
that you can cry, it's here. Yeah, if you if
you want any time at.

Speaker 1 (16:11):
All, it's good. It's it's kind of nice. I shouldn't
say it's nicecause it's stainly not nice, but it's good
to voice. And obviously said it out there right because
he's no compartmentalizer. So, like I said, from the time
they pressed the button to delivery was from what I understand,
like eight ten minutes something like that. They put Alex
straight under like like straight to sleep, cut her open,
pulled the baby out, and then it's probably about an

(16:32):
hour an hour and a half until I could see
Frankie and the first time I ever saw her, she
was in a little like incubate.

Speaker 2 (16:43):
You can take a second if you Jack, that's good.

Speaker 3 (16:45):
It's good.

Speaker 1 (16:46):
She's a little incubator. She wouldn't have been much bigger
than this, and she had probably half a dozen to
a dozen wires hanging off her and she had a
sea pat machine. So she was obviously being a help.
Her breathing to be helped, and that was pretty difficult.
And then Alex. The first time Alex got to meet
Frankie was on FaceTime, So I think as a family

(17:08):
were quite robbed of that particular experience of like what
you asked him before about being a father and how
like when did you know and all those types of things.
And obviously that's probably such a crescendo point in being
a dad's being there, cutting the cord, having the sharing
that moment with your wife and your child.

Speaker 2 (17:26):
It's what you imagine it to be like in movies.

Speaker 1 (17:29):
You see what you see in movies, and listen, don't
get me wrong, there's a lot of people that don't
get that, but they get some level of that. We've
got none of that. Yeah, So that was that's Frankie's
first kind of story. And from that point we spent
probably eight eight or nine weeks in Nyiku in terms
of and we started at RPA and then we're transferred
to Prince of Wales and then Prince of Wales Private,

(17:51):
and that was a pretty tough, like eight weeks, because
you have the child, and then the baby doesn't get
to come home with you, like even if your wife's
kind of in a room and where the way that
nicle worked at APA, and I hope that none of
you ever really have to truly spend some time there.
But the wards are upstairs and the babies are downstairs,
so you're not really with your child either. You get
to go and visit them and whatever else, but you're

(18:13):
not with the baby. They're being taken care of amazingly
by the nurses and the like, but you're you're not there.
It's not yours and you're not sleeping next to it.

Speaker 2 (18:22):
Do you think there's Maybe there's not, but do you
think there's any just mentally knowing that you're not even
on the same floor, that the separation is in height,
and more so I think looking back.

Speaker 1 (18:32):
At it, it probably is. At the time, you're just
in survival mode. You're just going, fuck, I've had this kid,
what the fuck's going on? The world is not I mean,
you've never prepared for a child, I would think, But
when nothing goes the way that it's meant to, I
think you just kind of just go I've just got
to survive. I've just got to survive. I've just got
to get through this.

Speaker 4 (18:52):
It's such a unique place and time to be and
right because even for like myself with Oscar was an emergency,
but same thing, I didn't have all the information. And
you're in that headspace any delirious, like you were saying before.
Then all of a sudden you're separated. And then the
thing that really weighs on my mind there where you
say we've got to they don't get to come home

(19:12):
with you, which I know Vickers spoken about before.

Speaker 3 (19:15):
It must be just so heartbreaking.

Speaker 1 (19:17):
I think it is. But at that point in time,
we were probably just going, fuck, ut lest she survived.
I think that was probably where our headspace was. It
was like she was PREMI we didn't really know what
her probability of survival of being such a small baby
was in the first instance, but I think it was
like we've had a kid, it's not gone the way

(19:37):
we wanted to, but nothing in life goes the way
you truly want it to. And it was more like her, Right,
we've got her. She's not with us, but she's here.
We'll get through this moment in time, and then we'll
start our lives in inverted commas.

Speaker 2 (19:51):
Right. So, at this point, knowing that she's PREMI, she
potentially has had some time with a lack of oxygen,
has anyone given you any type of information on what
impact that could have?

Speaker 1 (20:03):
No, so, not necessarily. I think they said that her
all of the the app guards and the oxygens and
all those things seem to have been okay. And I
think there's a we'll touch on this in some time,
but if she's under thirty weeks, they would have given
her an MRI to check her brain, and she was
just past that time apparently, And whether that's like I said,

(20:23):
we've learned as we have gone on, but the MRI
itself will probably would have shown a lack of white metal.
But yeah, so at that point we didn't know that
there was anything wrong. We just thought she was a PREMI.
Everyone said that things were like kunky Dory, she just
had to stay nicer until she grew keep her monitored
and then in eight ten weeks we'll get a home
and start again.

Speaker 4 (20:43):
How is mum recovering after it, because we talk about
the baby and stuff like that, but also Mum's gone
through this too.

Speaker 1 (20:49):
Yeah, so she was. She's stoic moa sue. Alex is superhuman, right,
So she was just pumped that she had a kid.
Obviously she'd had a cesarean, which we know is not
the greatest of things, and a recovery time is long time.
It's a long time. But yeah, she, like a lot
of things, she takes it, just takes it in astride
and gets on with it because we've kind of has

(21:09):
time's gone on, we've had to but yeah, she at
that point in time, she was happy that she had
a kid. Didn't go the way we wanted to, but
we had a little girl, Frankie, and yeah, she was
in a pretty good headspace all things consider it.

Speaker 2 (21:21):
And then at what point in the weeks following did
a test notify you guys that something wasn't what it
had to do?

Speaker 1 (21:28):
So we took Frankie home, probably eight weeks after her birth,
so like in April and then I'm a stubborn walk
and I haven't kind of traditioned around. Well, I wanted
to create a tradition around. My grandfather came from a
small village in Cypress and he was christening this in
a church in his village in the sat in a vat.
I was christening in the same church and he was
still alive at that time, and I wanted to take

(21:50):
Frankie to Cypress to do that whilst the whole family
was still together, because like I said, I'm stubborn and
my way the highway sometimes and I forced everybody there.
But so we took the trip, and she was probably
two and a half or three months old at that point,
which I think, in hindsight probably wasn't the right thing
to do, but we didn't know any better.

Speaker 2 (22:06):
Can I just say I took Marley on a trip
overseas when she was three months going to Europe as well,
go and say it's nice, thank you.

Speaker 1 (22:20):
So we did this little holiday, but Frankie was so
temperamental and difficult and wouldn't sleep and wouldn't be on
the boob, and we went while we're over there, so
it wasn't really a holiday obviously, with the intention was
that it was going to be a holiday, but as
things went on, she kind of got worse and was
crying and just called restless, would not sleep, wouldn't boob,

(22:40):
wouldn't feed. Took her to the hospital in Cyrpus, took
her to the doctor, everyone saying, it's colleague, it's this,
it's that, whatever else. We weren't seeing any seizure activity,
or at least we didn't know what a sege looked
like at that point in time, so wee. So we
did that trip, came home. We're like, fuck, she's just
a difficult kid. Everyone's kind of going sugar out of it,
sugar out of it. We took it at the er

(23:02):
a couple of times and then Alex noticed which and
again everyone was saying, colleague purple, crying, all these other
kind of things. And then Alex noticed her starting to
do like these kind of like small little twitches or tweaks.
And then our film that, like I said, our GP
kind of said, hey, like it's nothing to worry about.
The said the doctors at the hospital said nothing to

(23:23):
worry about. And then Alex filmed it, and then we
went back to er and said, hey, this is what
she's doing because it wasn't constant. It was kind of
like in and out spring and.

Speaker 2 (23:31):
It's so important to get it on camera.

Speaker 1 (23:33):
Do you have to get it on camera? Because like
I said, we were knocked back and she probably was
doing that a little bit. The siege is a little
bit before when we last couple of times went too
r but we didn't have it on film and she
wasn't doing it. When we're then they're like dismissive. You
just overly cautious parents, whatever it may be.

Speaker 3 (23:47):
You can't get to do it on demand as well.

Speaker 1 (23:49):
Yeah, but it's hard to see.

Speaker 2 (23:51):
So when they're that young, they're not in control of
their body, and it's such a fine line between it's
just them moving about to having like, yeah.

Speaker 1 (24:01):
She was like she was pretty much jackknifing. So effectively,
what she was doing was she'd be like a normal
baby paying around and then she'd lock her arms in,
turn her head and then kick her legs up and
so it was just like a full blown like tick.
And so when we took her back to er and
we showed in the video and like you know when
people say, oh fuck, I hate sitting around in the er.

(24:22):
If you're sitting around waiting in an ar it means
you've got nothing wrong with you. Yeah, we showed on
this video and they were like, you asked, let's go.
So that was at about four months old, and then
we probably didn't leave the hospital for a good two
or three months again.

Speaker 2 (24:35):
After that, whoa, yeah, were diagnosed. This we given.

Speaker 1 (24:39):
So what happened effectively was they took us up to
the neurology ward. They scanned her body with a blue light.
I'm not sure why they did that, and then they
booked us in that night or that day for a MRI.
And what happens then, obviously, is they put the baby
to sleep, they scanned her brain, they kind of wake up,
and then you wait for the results. So we're kind
of sitting around in this neurology ward, doctors kind of

(25:00):
in and out, in and out, in and out, and
then they said, oh, can you just come with us,
And so we got taken into like a white and again,
fucking white room seems to be the place to go
when something sucks up in the hospital. But we get
taken this white room and here we go cry again
it's okay, and it's me and Alex the neurologists, and

(25:20):
the neurologists is offsider and then a social worker and
they sit down and they say, like listen, sorry, so
hard to really good. They said, oh, she's got a
lack of white matter on the brain, and like, what
the fuck does that mean? And they said like, we

(25:46):
don't know what's caused it, so we can't tell you
that it's surreal palsy, but it is the equivalent of
what cerebral pauses, which is effectively a white matter loss,
whether that's from injury or something else on the brain.
And they weren't sure whether it was injury or a
genetic cause. And I just remember just the whole world
and yeah, that's a pretty fucking tough day. Alex and

(26:09):
I gathered our thoughts, and I remember that we were
sitting there and it was the first night and probably
similar there was still a little bit of that kind
of covidness around. But they wouldn't let Alex and I
stay at the hospital together that night, and they said, listen,
you two go home, go home. I had Alex. We
went to the hospital not thinking we had to pack
a bag. So I was like, let's go home and
I remember we get home after the fucking world has

(26:31):
just collapsed, and we both get in the shower together
and we just sit in the shower. We both sit
on the floor in the shower for an hour, just
in tears. And she said to me this, she said,
I remember you saying to me like what's going to
be is going to be and we will get through this.
And fuck, I think we're still together. We're still here,
so we're clearly getting through this. But yeah, that moment

(26:52):
in time was probably the worst experience I think I've
ever had. And I called my mum that day and
I and fuck, I'm going to.

Speaker 2 (27:04):
Tell you, it's so brave of you to be able
to be this open, and can we tell your story.

Speaker 1 (27:10):
I think it's more about making sure that others that
go through something like this have know that it's going
to be okay in some way. But I remember I'm
calling my mum and just going, I don't want to leave.
You know, It's like, if she's going to be what
the doctors are saying she's going to be, the world's
not fair enough till personally that and I don't want

(27:32):
her to have to experience a life like that. So
that was a fucking, very tough, tough time in our life.
And that was before we found out that she lost
a sight too, so it's another part of the story.
But yeah, it was not a very easy time for us.
And I think the time that, like I said before,
that Alex and I were friends before getting together, probably

(27:55):
really made us able to get through that moment a
little bit better, I would think, a little bit more
healthy because that friendship was the foundation for what we had.
And being in a situation like that where your fucking
word's upside down and you don't know what tomorrow is
going to bring, you need that person behind you or
next to you, holding your hand, supporting you, and you
need to support each other. And I, yeah, that time

(28:16):
in my life was certainly certainly the hardest and probably,
I hope is the hardest moment that I ever have
to have and I and I would never wish that
on my worst enemy.

Speaker 2 (28:28):
When you're going through those tough times, is there anything
that helped you? You know, if you're going down, you're
spiraling about your circumstance, And I think the hardest thing
can be when the reality of life doesn't match up
to what your expectations were and when you think about
that and you're struggling, what would help you?

Speaker 1 (28:50):
I always say this, like the Sun's going to come
up tomorrow, right like, and you know that there are
really beautiful moments in life that are really beautiful and
they will happen. And again, I think everybody has tough moments,
and everybody has peeks and troughs, and I think, yeah,
it's just simply that the son's going to come up,
and if it doesn't, we're all in trouble anyway. And
I've said I say that quite a bit. I think

(29:11):
it's that thing of tomorrow's a new day. Tomorrow might
be shitter than the day before, but at some point
something's going to turn. And you've got this little girl
that's super reliant on you, now like you can't she
doesn't come with a warranty. You can't give her back,
not that you would, but your reliant on her. I think, yeah,

(29:33):
if maybe if she didn't make it, then things would
be different. But certainly that having her there, knowing that
the only thing that she has is Alex and I
probably gave us the strength to just keep going because
you don't have an alternative there's no alternative solution, Like
what is your alternative?

Speaker 4 (29:48):
It must be such a profound feeling to think, Okay, well,
like you said that, like Frankie has us and is
going to rely on us so much, and it's sort
of it gives you another purpose, right.

Speaker 1 (29:59):
Give a complete purpose now in life.

Speaker 4 (30:01):
And I just want to go back to that time
you went you went home, you sat in the shower,
you're trying to process that. Can you tell us a
little bit what happens next? I mean for Matt and
I who've never been through anything like this, let alone
been able to talk to someone in such depth, and
we do appreciate it, thank you for having us, But
like I'm interested to know what happens next.

Speaker 1 (30:20):
Sure, so I took Alex back to the hospital and
then it just becomes doctors, tests, meetings, information, information dump.
And for us, there wasn't a like I said before,
there wasn't a finite like, all right, there's an injury
on the brain. This is what this is what it is.

Speaker 3 (30:40):
It was like it.

Speaker 1 (30:41):
Could be an injury or it could be genetic. So
then you spiral again because you're like, all right, well
if it could be this, or it could be that,
and I think for us it was more not having
an answer made it a little bit harder. But you
just try to information dump as quick as you can
and pull as much info out on everything that's kind
of been given, and you just have to learn to

(31:02):
adapt to what's been put in front of you. Like
I think that's what it comes down to, is you
just go, all right, well, the doctors start telling you
this information, so then you quick doctor Google or I
don't think, I mean AI was around, but no one
was really using it like I did lew today. But yeah,
so it was all about like doctor will say this
quick deep dive till the next meeting, what's that about?

(31:22):
And then like you're learning all these words and hearing
all these things that you wish you never had to
hear about.

Speaker 3 (31:27):
Yeah, you must find yourself in a lot of information spirals.

Speaker 1 (31:31):
You're doom scrolling info. Oh I couldn't, but you're not
doom scrolling images. You're doom scrolling info and just trying
to absorb as much info as you possibly can about
whatever that doctor or that person had just told you
about prior before the next person comes in. So, like
I said, there was a lot of tests. That poor
little thing was a pincush and blood test, you'reine test.

(31:53):
You had to catch piss all the time just to
make sure, like all those types of things.

Speaker 2 (31:58):
I'm just trying to think of, like what it must
be like. And because sometimes and this is not an
attack on healthcare, like doctors.

Speaker 1 (32:04):
But when they explain for you guys to strike, how
would R.

Speaker 2 (32:11):
But the sploreed it out like like you and you're
like every second word, You're like, can you just say that?
Like how do you spell that? I don't know how
word per pvls.

Speaker 1 (32:21):
And acronyms and all these things, and you just go,
like I.

Speaker 2 (32:24):
Said, again, what does that mean? Running?

Speaker 1 (32:26):
Per? I can't even say peri ventricular loucal Malaysia, which
is a wow, give us that one more time, ventricular
luca Malaysia. So like there's all these acronyms and words
that you just doctor google, But what's that mean? What's
that mean? What's that meaning? Before the use of AI
or the AI wasn't kind of there at that point
in time. That was what we were doing, was just

(32:47):
googling all these acronyms.

Speaker 2 (32:49):
What information were they telling you about? Like long term impact?

Speaker 1 (32:53):
They they didn't and they and I think they do
that selectively because they don't truly I mean, the more
you go on and I that we have a beautiful
health system, so please don't think this is this isn't
any indication of our belief. But I think it's more
they don't truly know when a baby's that size what
the outcome is going to be, because it's like a

(33:13):
spectrum of it's a gamut, right, Like there are people
out there that have no brain, with all due respect
that and literally when I mean like a physical no brain,
who have completely operational and functional with full brains that
are vegetables.

Speaker 3 (33:25):
Right.

Speaker 1 (33:26):
So I don't think they're going to say to you, hey,
your kid's going to be this, and this is the
life expectancy in this what is because it's just not
it's just not how medicine I think works.

Speaker 3 (33:36):
Yeah, everyone's going to be different.

Speaker 1 (33:39):
And so for us it was, like I said, the
doctors were going, oh, it's it could be this or
it could be that, Like this is that this is
the spectrum of what the outcome is, the likelihood of
the outcome is, and maybe they kind of play it
down a little bit so that they don't just dump
you with the reality of what your life's going to be,
rather than going get your kids fucked politely and this

(34:00):
is your life and good luck and it's over. I
think that they slowly drip feed you what you need
to so you can process at least a little.

Speaker 2 (34:08):
Frank is that how old is she now?

Speaker 1 (34:09):
Four? Four in April, and so she's obviously premier.

Speaker 2 (34:12):
At like the three year market. They're giving you any
expectation of what her ability will be.

Speaker 1 (34:18):
It's funny they don't say that, but when we go
and catch up with the neurologists or the doctors or
whoever we're the specialsts that we're catching up with, they
will say, she's doing more than we thought. So that's
quite that's quite reassuring or comforting. It means that obviously
they had, like I said, they were holding information back.
I think as you. But she's doing things that they
didn't expect her to be doing.

Speaker 2 (34:40):
I saw the video where she was speaking for the
first time. Was that something that you were expecting or
were you always hoping for?

Speaker 1 (34:48):
I think you always hope for. You hope for normalcy, right,
you hope to have a child that's going to run
home run up to you when you get home from
the from the office, from the office, or from work,
or whoever it may be. So you want that, And yeah,
I think having an expectation of a child like Frankie
will only make you feel really bad, like it'll bring
you down. So we have no expectations on her. It's

(35:09):
not a fair pressure to put on her. We try
our best to give her every opportunity to excel and
do the most normal thing she possibly can, and that's
talk and feed herself. We bought her a walking machine,
which is like a robotic gate walker, to try and
get her body moving. Whether she lever walk unassisted, who knows,
but I think medicine's going the right way and with

(35:31):
AI and technology, Like the other day we saw a
robot that's effectively a walker with a gyroscope that will
keep a child like Frankie stable so she can walk
by herself. Yeah, so from your question about like her talking,
we don't have an expectation on her. That's not fair
to do that to her. We want it, We yearn
for it, because that's what you want as a parent.

(35:51):
You want to see your child do everything they possibly can.
But when she does things. We're fucking through the roof.
We're so excited about the simplest things and the inch
stones rather than the milestones or the miller stones or
whatever it may be. Like, any tiny little improvement for
us is fucking massive.

Speaker 2 (36:08):
What are those improvements? What are they like?

Speaker 1 (36:11):
Just like, for example, she like she can now she'll
bring a water bottle to herself, she can feed her self,
feed a little bit, she can army crawl saying mom
and dad, and there's a few more words coming into
a vocabulary, like if she wants more food, she'll say more.

Speaker 4 (36:27):
Like.

Speaker 1 (36:27):
Those are the types of things that we're starting to
see now, and it's taken a fucking lot of work,
like a fuck a lot of work. But the poor
little thing she she doesn't like praise. So like when
you when you like she does something and you like
Alex and I jump for joy, she just like she
shuts She shuts down a little bit and like starts
to cry. I think I don't know whether she thinks
she's in trouble or she doesn't like being put on show.

(36:49):
But we're so ecstatic, but we have to kind of
have to control that emotion a little bit. We're just
like the corner of it, Like it's like baby sleeping.

Speaker 2 (37:00):
You like could just like wave your hand, no noise.

Speaker 1 (37:04):
That's exactly what it's like. And so every moment where
she does something that we're not expecting is a brilliant
moment and it's probably, I would assume, because again we
haven't lived it. When your child takes the first step,
how excited you are, or your child says their first
Now I can say a child says their first word.
It's like a really fulfilling moment in time. And that's

(37:24):
probably part the part of parenthood that most people have
kids for is to bring someone up, take care of them,
look after them, and make them try and excel in
the world as best that they possibly can.

Speaker 4 (37:34):
It's funny those moments like I don't know we hit
you right, especially, I mean for you guys that I
was going through all that and then celebrating those wins.
It must be amazing to hear her same mom and dad.

Speaker 1 (37:48):
Mom, my dad, And what.

Speaker 4 (38:02):
Is you want?

Speaker 2 (38:06):
Yeah, Like I think you talk about you know what
your expectations are, and you're trying not to have certain
benchmarks in mind. But I remember when when my girls,
you know, that first time, like, I'm a pretty needy
parent and that.

Speaker 1 (38:20):
Give me what I want.

Speaker 2 (38:24):
It's funny, and I guess we have a lot of
non parents also listened to the podcast, and you know,
what is it like for yourself not having expectations on
what milestones she will be able to hit, to then
be surprised and hear the words dad come out of
Frankie's mouth.

Speaker 1 (38:38):
Well, it was mama first, which.

Speaker 2 (38:41):
Apparently is easy to say.

Speaker 1 (38:43):
It's who's the favorite mama? So there was a little
bit of jealousy and envy. Let's let's call, which is
probably normal, it's a normal experience, but we're in the
same boat. When she said that that dad, it was
a really heartfelt, warm and fulfilling moment. I think you
definitely as parents, like I said, you get these moments

(39:05):
in time where you have a child or your your
you think this is the way that your life's going
to go. So to get like a normal moment was
really beautiful. I remember looking at Alex and I teared
up a little bit about that particular moment, and she
was so smug about it too, because Alex was like, yes,
she's saying it both and I, yeah, it's it filled
me with a lot of a lot of warmth. And yeah,

(39:27):
it's a moment that I'll cherish for the rest of
my life.

Speaker 2 (39:29):
It's funny when you say, like it gives you just
a bit of normality, which I think is so easy
to underestimate what you what you want yearn for.

Speaker 1 (39:38):
Of course, we yearn for the normal, the normalcy. We
don't have the normalcy. And like I said before, we're
not we're not here to compare to anybody else. But
you have a child because what you want to be
a parent because you want those normal things and you
want that normal trajectory in pathway. And so yeah, we
really get these little glimpses of what the traditional let's
call it parenting experiences like, and they feel us with

(40:00):
so much joy. And I think because we don't get
it as much, we probably don't take it for granted
as much, I would think. And so when it happens,
it's a real Cameras come out, Frankie shuts down, and
then we film it and then we send to the
family and go, look, gotcha that. But yeah, those moments
are you cherish, and I think we will cherish a
lot more because we're not sure when the next one's coming.

Speaker 2 (40:22):
How do you find other adults react to you, guys,
when you're in public, when you're with.

Speaker 1 (40:27):
That That's a really good question, and you certainly get
a mix of reactions. I like to think that I'm
quite oblivious to others, and whether that's a good thing
or a bad thing, I don't know. But I know
that Alex really notices the world around her from that perspective.
And we've had really brilliant experiences where Alec, either ourselves

(40:50):
or Frankie's got a couple of caros who do a
couple of hours a day and they're the most brilliant, brilliant,
brilliant girls. We'll take it to the park and a
grandmother and a little kid will come up and player
with Frankie or hold a hand or or be really inquisitive.
And that's the really beautiful side of it. But then
you see others that just fucking stare right, and they're
just like, they're just looking and they don't like and

(41:13):
staring's okay because obviously, yes, sure she's a little bit
different and she's got little things on her legs to
kind of keep her ankle straight and the like. But stare,
look at the parents, smile, acknowledge, and then stare back
like that's okay. But to look at just to fucking
stare at a kid like it's creepy. You know. Sure,
yes she's different and that's okay, but everybody's a little
bit different. But yeah, we sir, Alex particularly, it's it's

(41:36):
a trigger point when people just.

Speaker 4 (41:38):
Like, yeah, I think as an adult, like we know,
like we both have toddlers and kids, and they they
don't know any better, and they're gonna stare and sometimes
they'll be very inquisitive.

Speaker 1 (41:49):
Kids are okay, they.

Speaker 4 (41:50):
Want to know as well because it's probably the first
time they've seen something like that. But as a fully
grown adult staring at a child for any reason whatsoever,
it's just fucking weird, and stop doing it.

Speaker 1 (42:01):
I couldn't couldn't agree more. I think back to your
point about having kid toddlers that are inquisitive fucking come
up to hello, hi, like normalize that rather than making
the kid go, oh, that's a fucking weird, because then
the kid's going to go, oh, I don't want to
go near that, or that's a bit old, or what
the like. So Alex is trying with everything that she's
doing now is just trying to kind of like normalize

(42:23):
it a little bit more. And we're never going to
be the first one, we won't be the last. But
I think getting people to appreciate Frankie's who Frankie is,
but she's just a normal girl that wants to live
the same experience as that everybody else does is probably
the message that's that's come out of what Alex has
started to try and do. Originally, she was doing it

(42:44):
as a third person looking on our on our experience
so far, so our kind of used to put little
videos together of like our holiday. So she quite likes
that creative, so that's kind of what she does. And
when Frankie and all the stuff happened with Frank's we
kind of she pulled back a lot. And then and
then to kind of process and start the grief process,
she built herself a little video of looking back at

(43:06):
us from a third party.

Speaker 2 (43:08):
That's how I found you, Yes, So she did that
to kind of help her grief process.

Speaker 1 (43:15):
And then in saying that, she started getting messages from
other mothers or other dads that were saying, hey, like
you've put into words what we don't know how to do. Yeah,
and then so it's gone from her using that as
a grief piece to going well, actually, is there a
way that we can kind of normalize for us what
we're going through and also show others that are behind

(43:39):
us in the same journey that things can be okay?
So yeah, So, like I said, from that point of
like people an adult staring, what we're trying to do
is just normalize who Frankie is and other kids that
are like Frankie, that are, like I said, just want
to live a fucking normal life like we all do,
and that have just drawn a short straw in life.

Speaker 4 (43:58):
Because I can imagine during I mean thet like you're saying,
you're very open about you're learning this as well as
you go. I can imagine it can be really isolating
in moments, and there would be people and couples and
families that would be out there feeling isolated. But you're
giving them a bit of a voice here where it's
like you.

Speaker 1 (44:16):
Know, and there's certainly moments of isolation. We're pretty fortunate
about the support crew that we have around us, and
as just an individual family, not talking about it holistically,
but yeah, there are certainly moments of complete isolation, right
like and even to our friendship group, like they've got
their their lives are so much more normal than ours,

(44:37):
and so relatability becomes like part of the isolation. Like
their kids are going to school, their kids have got
first first year school photos, or they're going to sport
and we're like, all right, sweet, we're going back to physio,
you know all we're going Like our life with Frank's
is very different to everybody else, and there is certainly moments,
I mean, outside of seeing a hospital room for three

(44:58):
or four months, when you're back in the real world,
there are certainly moments of isolation where you're just like,
I have nothing in common with my friends from a
from a parenting perspective, either my friends are beautiful, our
friends are amazing, but when it comes to the parenting
side of things, like we have nobody to sense check with.
It's not like, hey, did your kid walk today? Did
your kid pick their nose? Like, it's not like we

(45:19):
don't have that benchmark or that ability to go my
kid's twelve and he did it, Like we don't have that.

Speaker 2 (45:25):
Then how do you how do you digest that? And
I'm not letting you know, eat you inside.

Speaker 1 (45:31):
I think you've got two choices. You either let it
consume me or you just say fuck it. We're on
a different path, and let's just write it and enjoy life.
Because I hate to say it, we're all going to
end up in the same place anyway, right, We're all
going to end up in a fucking box at some point.
So let's just make the most of what we've got,
because if you don't, like, you're just going to chew
yourself up and you're going to isolate. And the world's
a beautiful place, Like there is so much beauty in

(45:53):
the world that I'm sure there are moments where people
fucking stare, but like that happens to everybody. But yeah,
like I said, I I think it's more that compare
comparing ourselves. I mean, comparison in anything is the root
of evil, right, Like if you compare your life to
somebody else's and there they're chapter fifty to your chapter one,
we're going to steal nothing on. So if we do that,

(46:16):
it's a spiral. And I don't allow myself to do that. Now,
Alex is pretty much the same, Like we don't just
like I said, you have moments. Fuck why us? This sucks?
What the fuck's going on?

Speaker 3 (46:25):
And that'll reflect onto Frankie too.

Speaker 4 (46:27):
Frankie'll be and she grows up, she'll see that as well,
and that's the sort of thing that she'll instilled in
her beliefs as well. You know, like, like there's so
many beautiful parts about life.

Speaker 1 (46:38):
We try to give her the best life that we
possibly can. And I think it's I think for us
it's it's it's tough and we have to work really
fucking hard.

Speaker 2 (46:49):
And I just say, when you say working hard, like
I complain a lot about parenting, right, I mean, we
have a whole podcast, and I know you didn't come
on here to tell your story and try sympathy from
anyone saying a sympathy. I sitting here, I am like,
holy fuck, it is amazing. Thank you what you guys

(47:14):
your situation is a lot harder than my own. And
how you guys can get through that, I'm like, I
got to fucking applaud you because I think it's incredible.

Speaker 1 (47:23):
It's mostly my wife. I'm just a support character, to
be honest. She's she's the one that support plays a
big key. She's Batman, I'm Robin. But yeah, like I
said before, like we just we just do what we
can to ensure that we have the best life for
Frankie that we can. And to your point of saying,
like you camplain that, but that's okay, that's your life,

(47:44):
Like we're living our life. There's probably things in my
life that are really great too that you don't have. Like,
I don't know, but my premise is like you're only
walking your own fucking race, Like I'm not walking in
your shoes, You're not walking in mind. Comparison is the
root of the stealer of joy, right, it's the same premise, like,
don't feel sorry for us. We're doing the fucking best
that we can in our situation, and we probably have

(48:06):
some harder times than most, but for the majority, we're
a very happy, go lucky family and we do everything
that we possibly can to ensure that Frankie gets anything
and everything she possibly can as normalized as she possibly can.

Speaker 2 (48:23):
To someone who doesn't know Frankie, how would you describe her?

Speaker 1 (48:27):
I describe her as a four year old little red head,
and I don't know where the red hair comes from.
Who knows nothing but pure happiness, and I know that
that smile of hers and that squill is something that
really truly will melt the coldest of hearts. And as parents,
we try to instill that happiness in her, and we
managed to bring that out of her a lot. Sure

(48:48):
there are times where she's tested, and times and she's tired,
and times we're tested and tired as parents, But on
the whole, she is by far the happiest child that
I have ever come across, and even with my friends, like,
I've never seen a kid that's happy than Frankie. And
and that's a testament probably more to Alex and myself.
If I can rub myself on the back of a.

Speaker 2 (49:09):
Little bit, please let us rub it. Thank you please.

Speaker 1 (49:12):
But yeah, like I said, she's We work so hard
to ensure that she truly is the happiest little kid,
and we give her every possible experience that she deserves.
And that smile every morning, and that laugh at every
night and that kiss good night is something that I'll
truly cherish the rest of my life.

Speaker 2 (49:30):
I loved watching all the little milestones like this is
the video. The first one I saw of you guys
and your family was when it was on the baby monitor.
It sounds very voyeuristic, super boyrasic, but now it seems
to work. It was you coming into the room and
just how happy Frankie was knowing that you were there
in bed next to her. I was like, oh, this
is beautiful.

Speaker 1 (49:54):
Yeah, she senses us, and obviously, like I said, she
can't she can't see, and I think that's her. The
hard part about that is that the eyes are fine.

(50:15):
It's the injury or the brain that's not processing the imagery.
So all the hardway's fine. It's like the software's got
a glitch's effectively probably the easiest way to describe the eyesight.
But yeah, her touch, her touch and smell and sound
is is really warming and she knows, she knows who's
in the room. And it's funny I said before about
how how Frankie doesn't like being put on show. Like

(50:37):
Alex will like, we'll be doing something and Alex will
obviously hit a milestone whatever and pull the camera out
to film because that's what parents do, and Frankie will
just stop.

Speaker 3 (50:46):
She just stop, or she'll just like my kids.

Speaker 1 (50:48):
Do that the same premise. But she like the fact
that she can't see, but she.

Speaker 2 (50:56):
I don't know, she just knows.

Speaker 1 (50:58):
Camera will come out. Maybe it's Alex goes quite rather
than who knows what it is. But she does those
types of things where the camera will come out and
she will just stop. She'll just stop doing whatever it
is that she was doing. And like I said, we're
kind of quite for this part. But the camera, because
you want to record and share with the fan what
the camera down. We have a baby monitor that most

(51:21):
people do and I think probably the whole way through,
but for Frankie, because she can't see and she's nonverbal,
you don't know when she's awake, asleep, whatever it may be.
And only until probably two or three weeks ago, she
was co sleeping with Alex And it's only now in
the last three weeks that I've managed to be able
to put Frankie to bed. But that camera was always
there because she was having midday naps and we have

(51:43):
two white noise machines on in the house, which is
now I can't sleep with that white noise, but you
can't hear you can't hear her, So that was obviously
used just to kind of monitor her, which is the
point of them. But it's able to have captured a
couple of really beautiful moments between both myself and Frankie,
Alex and Frankie, and to be able to share that

(52:03):
and show that she has love and kind of show
her in a different light is a really nice thing.

Speaker 4 (52:09):
And you're also going to have those forever, right, And
that's I mean, one of the perks of modern day parenting.
Now I'm not rummaging through my NaN's house to phone
photos of me.

Speaker 3 (52:19):
I can't get away from all the shit. It's literally
I just lit up there and as a kid there,
So like that's the thing.

Speaker 4 (52:26):
You're going to look back on that sort of stuff,
and same with Frankie is going to look back on
that sort of stuff and you guys will talk about.

Speaker 3 (52:31):
It and be a core memory, which is amazing.

Speaker 1 (52:34):
And I think, like I said before, we're just here
to show others that there is hope, even when you
don't think that there is hope, Like we don't have
like I said, we don't have any expectations on her.
And there are families that we hear about that are
in really die straight and our little piece of happiness
shows them that there is potential and strength. And so

(52:56):
that's why we do what we do.

Speaker 2 (52:58):
And we spoke about it really briefly before we started recording.
But what does falling pregnant again look like for you guys?

Speaker 1 (53:05):
We were very fortunate to have fallen pregnant again in
September of last year, and we naturally conceived triplets, which
was probably a wild ride in itself. We found when
knew Alex was pregnant, but I'd had a trip book
with my cousin to go away and then I was

(53:27):
going to the obst atrician and found out we were
having triplets, which was fucking wilde So I'm on the
outside of the world on FaceTime finding out that we're
having triplets, which was super surreal and naturally conceived, not
ivfor their natural self. It was an identical pair and
let's call it a spare, I know, that's probably the
worst way to say. Effectively, it was an egg that

(53:48):
split and a single singleton, and given Alex's history of
birth and obviously cervical and continent in competence, the doctor's
highly suggested that we reduced from three children to one,
which was pretty heartbreaking in itself. Yeah, so we did that,
which was at about twelve weeks, which is a bit. Effectively,

(54:09):
we had to choose to terminate the twins at about
twelve or thirteen weeks, which was super tough in itself,
but given imagine, but given Alex's history, we didn't really
have a choice. It was like, you're either going to
go to twelve or fourteen weeks Alexi is servis gonna
give out and then you lose all of them, or
you give one a good fighting chance. Alex has a

(54:31):
shortened cervix because she had an operation when she was
a little bit younger, and what happened was they had
they had and I'm not she should be here explaining this,
but effectively the operation reduced the length of a cervix,
and that's kind of what's caused in the first instance,
the shortened cervix. But I think the way that Frankie
was delivered has caused the more incompetence of the cervix

(54:51):
going forward. I'm not a medical expert and they haven't
said that for sure, but that's just the way that
we think it's transpired. And so we got to about
eighteen weeks and the obstetrician said, we need to put
a cervical surclag in which is effectively they put it
asleep and they basically stitch the cervix closed in the
hope that the pressure of the baby will and the

(55:11):
stitch will keep the cervix closed. But that stitch failed
at twenty weeks and we had to birth, well I did.
Alex had to birth the third triplet at twenty weeks,
which was again probably super tough, and I think if
that was its standalone experience, we would have found that
a lot harder than everything else that had transpired. I

(55:32):
think that is its own incident. Is awfully tough and
awfully difficult, and pregnancy lost in any shape or form
where that's one week or at forty weeks, it's fucking awful.
But given our life and our circumstances, it became just
another part of the journey. But the hard part was
Alex literally birthed a little child, actually birthed a little baby,

(55:53):
which wouldn't have been much bigger than a bigger than
like a Barbie doll, nails, fingernails, like, everything fully formed,
which was super difficult. I mean I had to cut
the umbilical cord right like literally in the room birth,
which was tough, and the baby's due dates was today,
which was which is kind of I don't know whether
that's like good, bad, indifferent, but it's just kind of

(56:15):
funny that we've ended up here today talking about this
when this is the day that we were meant to
be bringing three more three more kids into the world.

Speaker 4 (56:23):
And we appreciate so much you coming in and I think,
I mean a tough, tough day, and I'm trying to like,
like I said, this.

Speaker 1 (56:31):
Is like a fictional story, right, and I doesn't even
feel like looking back at it now, it doesn't feel real.

Speaker 2 (56:37):
Yeah, the level of grief that you guys as a
couple of had to go through. And so do you
think that you and Alex will still push your head
with trying to feel pregnant again.

Speaker 1 (56:47):
So yeah, so we've we're doing a couple of things
at the moment. We were in Melbourne last week to
get a thing called an abdominal sur class, which what
that is is it's a keyhole procedure where they put
in a stitch kind of at the top of the
cervix rather than at the bottom, so not through the vaginal,
which is what happened the first time, so it's effectively
at the top of the or the bottom of the
uterus or the top of the cervix, and so that

(57:09):
seems to be like it has a very very very
high success rate, and that's something that a woman can
if they wish, keep in for life, so you can
fall pregnant with it, you can have it till the
day you die. If you obviously want it out, you
to do what you need to do. I'm not the
medical expert, but effectively, it's just in there. It's like
an insurance policy, so when you do fall pregnant, there

(57:30):
is something that's there that should hopefully catch the baby.
And from all accounts, it's quite successful in terms of
being able to hold women who have an incompetent cervix.
So yeah, so we're doing that and we're also doing
embryo retrieval. Like we said, we don't have an issue
falling pregnant. It's obviously alex is getting a little bit
older and the body clock is ticking for her, and

(57:51):
so we're just doing some embryos to be able to
be the one if we're fall pregnant again. Naturally in
the circlash holds if we choose to have another child,
at least there's eggs that are ready to go, or
sorry embreads that are ready to go, or if we're unfortunate,
then we'll probably look to go down the surrogacy path,
which is a whole nother fucking gamut to itself. And
I'm really hoping that the surclage is what holds, and

(58:14):
it's seeming like from all accounts it's the right trajectory
or the right path that we're going down. So so yeah,
that's probably our next step, and hopefully sometime in the
near future we are able to bring another baby home
in probably better circumstances than the last few, the last
four or five years that we've had.

Speaker 2 (58:32):
So like, it's really easy for me to think, oh,
we're all on the same path, and everyone's parenting journey
is pretty much similar and yours is wildly different. And
I'm like, just the strength that you guys have had
to get to where you are now, knowing what you've
gone through, it's fucking amazing.

Speaker 1 (58:48):
Thank you. But I like, I think anybody I would think,
or the majority of people I think would then would
do what we've had to do. You don't have an alternative,
Like you're a parent, you choose if you willingly become
a parent. It's like anything you you have, you've got
to see it through. I think that's you got to
fight for it. You've got one hundred percent, right like
And maybe I can harp on this like you obviously

(59:08):
your journey to sobriety, right like you, you've got to
fight for the things that you want. And obviously your
children are far more important than the outcol for you.
And I think that that's a super strong point because
I'm sure what you're going through is fucking not easy either,
and that's your journey, right like I'm saying, I've got
my child is my difficult part. Obviously you've got your
sobriety piece. Which hats off to you for thanks so
much for doing for doing what you're doing.

Speaker 4 (59:29):
And it's a tessment to you, guys with how much
you know, how much you're putting in and how much
you're fighting and and like you're you're enjoying the moments
that you guys have on your journey where you can
and and like you said, like that she's exceeding, you know,
these milestones that doctors have said that she's exceeding.

Speaker 3 (59:46):
And it just must feel your heart too to hear
that it does.

Speaker 1 (59:49):
It certainly gives us. It gives us hope, We get
us hope for the future. But I think my personality
won't allow me if it's still, and my personality won't
allow her to be locked away kind of seems to
happen to some people in our space, which we hear
some pretty horrible stories. But yeah, I can't sit still
for a minute, and I'm surprised that I'm still sitting
here without bouncing around the walls. But yeah, like I

(01:00:12):
want to see the world and I want to experience
the world, and I have the ability, and we have
the ability to give Frankie that, and we're going to
do that for as fucking long as we can because
it's not, like I said, she just deserves as much
as everybody else, sure, and to be honest, maybe even more,
because she's drawing a fucking short straw, you know, like
her life's not not as fair as everybody else's, and
that poor little thing. She works her hard out to

(01:00:34):
ensure that she maximizes what she can get out of life,
and as parents, we push her. But yeah, our job
is to fill her fill her life with joy and
happiness as best that we possibly can and make sure
that she's surrounded by love, because at the end of
the day, like I said, we're all going to go
to the same place, so let's just fucking enjoy the
ride while we're here.

Speaker 2 (01:00:52):
Yeah, I thought you nailed. I was talking about celebrating
the winds because if I'm being completely honest, knowing you
know what diagnosis you've had with Frankie, part of me
wants to really grieve for you, and then there is
that element, but at the same time, watching you guys
celebrate those wins is so important for me to understand

(01:01:13):
your situation more, of course.

Speaker 1 (01:01:14):
And I think we will always grieve, but we will
grieve to an extent the life that you envisioned rather
than what other people have, I think is what it is.
Like you said when one of the earlier questions was
around growing up, when did you know you wanted to
be a parent? I think, like I said, you always
wanted to be a parent. You always wanted to be
standing on the sideline cheering your kid on and yelling
and letting up them for doing something wrong and having
those moments, so that grief will be constant. And I

(01:01:38):
think as time goes on, and the more we kind
of realize where Frankie's at and her limitations and whatever
else comes, we know that there's more grief ahead, which
is probably the harder bit. It's like, when's the fucking
next problem going to happen? You know, Like when is
she going to relapse and have another seizure? Like we
don't know her life span, Like is she going to
outlive us or we're going to outlive her? Like we

(01:01:59):
don't know those types of things, and so like, you can't.
No one can have a future plans. You can walk
out of here and get hit by a bus and
it's probably a little bit more. But and there's a
bit of morbidity in what we're talking about, But you
can't future plan, all right, my kid's going to go
to school. There's no like traditional timeline of what you
expected as a parent, like I'm going to grow up
and I'm going to have a kid. They're going to
go to school at five and so on and so forth,

(01:02:21):
and that traditional lineal line that most families go through
with trial and tribulation. We don't have a lineal line.
We don't fucking know what tomorrow is going to bring us,
And so We tried a plan as best we can.
But yeah, like I said, we're just not on a
linear line, like everybody not on a lineal line. But
you know, most people have a traditional line that they've

(01:02:42):
got traditory that's probably a better word. So we don't
have that, and so yeah, we're trying to kind of
come to terms with that, which is probably the grief
bit that still sits behind at all times. Yeah, it's
not a comparison of others. It's a why didn't we
get what we thought we were going to get right?
And how do we fulfill that? But we just want

(01:03:05):
to show that Frankie is so loved at Frankie, that
there is so much love in this world that people
are really happy to be involved in her life. People
behind us are coming through and seeing that there is
hope and opportunity for them and their children. And the
questions like we have all this assistive technology that we
didn't know about before we started deep diving, and now
there are parents asking us, hey, where did you get that?

(01:03:27):
Where did you get this? And so it's kind of
become an information.

Speaker 2 (01:03:30):
We would like to think it's a community.

Speaker 1 (01:03:31):
Correct, it's a community, and we'd like to think that
what we're doing is we're helping some other parents who
are on the behind us on the journey come through
and really know that there is hope and that they
can love their child and things will be okay. And
we really want to spread joy, love and happiness and
normalize what's happening with Frankie.

Speaker 4 (01:03:50):
Yeah, from all this shit on the internet, like guys
putting tails on the head and pretending to be their wives,
there are small there are small pockets that are very inspired,
very inspiring, and also like, yeah, it builds this community
that It's funny when you go onto videos like yours
and other accounts that pop up, and you go into
the comments and you're like, Okay, what am I going

(01:04:11):
to expect here? And it's a lot of people getting
little tips from each other.

Speaker 3 (01:04:15):
It's amazing. And then also being like this is right.
I'm on the right here.

Speaker 2 (01:04:25):
At the moment. You're not working, Alex, your wife's not working.
I'm wearying some Frankie merch. You're wearing the Frankie hat.

Speaker 3 (01:04:32):
Yeah, I've got one.

Speaker 2 (01:04:33):
With the money raised from the selling of the merch,
where does that go?

Speaker 1 (01:04:36):
So every year or not every year, probably every other
year we've done a drop, so we've done a hat,
a set of hats. We've done these jumpers now with
the help of a friend of ours and we're doing
another one now. And what we did the first time
we just kind of donate to somebody who has some
sort of relationship to Frankie. So the first year we
did the hats, we donated all all the proceeds to

(01:04:58):
Epilepsy Action Australia. They were really good to us when
everything kind of happened with the with the siezures and
they really exceptional to us as a family and really
took care and brought us in, so we donated the
money to that. And then last year when we did
the jumpers, we did a donation to a company called Watability.
They basically like community at community outreach program. A friend

(01:05:19):
of our, Steve Dresl, that's his business.

Speaker 4 (01:05:21):
The cafe that we go to near my place that
we also met vic. They have a lunch like once
a week with the Whatability guys in there, so.

Speaker 3 (01:05:28):
I seem all the time they're doing really good stuff.

Speaker 1 (01:05:30):
So they've got what Ability, good job they've got, they've
got a foundation outside of the actual operational business which
is to kind of like com committity outreach. And so
last time we donated to that and then yeah, we're
going to probably do another one this year. And I
think we don't know, we hadn't really even talking about
talked about between Alex and I where we're going to
donate the money. But yeah, like us, any money that

(01:05:51):
we make goes straight to whatever that charity.

Speaker 2 (01:05:54):
This is a little presumptuous, but if you need any models.

Speaker 1 (01:05:57):
Oh there'll be a few samples sent through. Thank you.

Speaker 2 (01:06:00):
You let any way that we can support you. We
would love to help out you do, then.

Speaker 3 (01:06:11):
Bring the calendars. Would you be happy to be in
budget smugglers.

Speaker 1 (01:06:16):
I might need a sock, but you can borrow. Thank you.

Speaker 2 (01:06:20):
We'll also put any links in the show notes as
well for where people can donate to help out, because
I think it's such a great cause. Thank you.

Speaker 1 (01:06:25):
Like I said, yeah, we certainly we're not here to
make money from Frankie, that's not our job. Where our
job is to make sure that others can get looked
after that are on the same journey, and it's it's
certainly been a very challenging four and a half years,
and I think our path is probably only at the beginning.
I don't think it's going to get easier. I certainly
think it's going to get a fuck load harder as
she gets bigger and larger and grows into a full

(01:06:48):
adult human. And if she doesn't get mobile, which is
she's proved me wrong before, if she doesn't get mobile enough,
then I think we're in for a really tough, tough
life from that perspective, But like I said, where we
will do everything we can to ensure that she lives
the fullest, happiest and healthiest life and that she's known,
that she's been loved by everybody, and that we've tried

(01:07:10):
to normalize her situation so that we don't have those
types of people the stairs and the young kids going
what's that mummy like? And that's no slight on children,
because children are inquisitive and they go. But it's the
parents that can educate the kids on what that looks
like and to normalize something that is a little unnormal.

Speaker 3 (01:07:30):
For sure, I.

Speaker 2 (01:07:31):
Think Frankie is so incredibly lucky to have such amazing
parents like yourself and Alex, Thank you and that dude.
It really is so inspiring. I don't know if you
know what you do for other parents just by telling
a story. But it's incredible, and the fact that it's
your first podcast as well, I just want to say
thank you so much.

Speaker 1 (01:07:50):
Thank you.

Speaker 4 (01:07:51):
Yeah, I appreciate you coming in and tell us your story.
And we know that our community and whoever listens to us,
they're going to love this and.

Speaker 2 (01:07:58):
The dots will rally behind you.

Speaker 3 (01:07:59):
You do nothing but good thing, So keep it up
and we'll be watching.

Speaker 4 (01:08:02):
We can't wait to see all the updates on Instagram
and everything.

Speaker 3 (01:08:05):
And what's the hand? What's the hand? Do you have?
The handle? Off?

Speaker 1 (01:08:08):
My heart? I actually don't know what it is because
I don't have I don't have it.

Speaker 2 (01:08:11):
Come on, do you have it?

Speaker 1 (01:08:15):
As I'm like, I think it's Alex Ray Underscore, but
it's w r A Y.

Speaker 4 (01:08:21):
We'll pup it in the show notes anyway. But again,
thank you so much.

Speaker 1 (01:08:25):
Thank you guys.

Speaker 4 (01:08:26):
I think what gets me about Jackson is how positive
here is about their family situation and the message that
they want to put across to everyone else.

Speaker 2 (01:08:33):
They are a family that has dealt with more trauma
than anyone deserves, but it is so inspiring. Their outlook
to Jackson to Alex and to Frankie, you guys are
doing such an incredible job.

Speaker 3 (01:08:44):
Yeah, thank you Jackson for jumping on and spending some
time with us.

Speaker 4 (01:08:47):
And if you've enjoyed this episode, please leave a review, subscribe,
or you can join us wear Matt.

Speaker 2 (01:08:51):
On social media Two Doting Dads on Instagram, TikTok. There
is also the Facebook group and a little reminder as
well that we are now we have given producer Vic
a lot more work and we are doing long form
full episodes on YouTube. But if you are going to
watch that, you have to also listen to it, have
to also give us a comment and follow us as well.

(01:09:12):
You have a lot of homework to do, get to.

Speaker 5 (01:09:13):
It right now and until next time, goodbye, bye guys.

Speaker 2 (01:09:34):
Two Doting Dads podcast acknowledges the traditional custodians of country
throughout Australia and the connections to land, see and community.

Speaker 4 (01:09:42):
We pay our respects to their elders past and present
and extend that respect to all Aboriginal and torrestraight onland.

Speaker 3 (01:09:47):
The people's today. This episode was recorded on Gadigal Land

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#238 Jackson Wray: The Dad Every Parent Can Learn From

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