December 17, 2024 • 25 mins
In this episode, Janson Hews is joined by Stacy Thomas, Senior Manager Media & Communications, who cares for her son with a rare genetic condition.
Stacy explains the importance of teaching her son to advocate for himself through self-expression, asking questions and having an inquiring mind. Stacy and Janson also discuss what makes someone a good carer and the intersectionality of work, friends and caring.
Stacy shares powerful insights on:
- The importance of teaching her son self-advocacy through self-expression and curiosity
- How caregiving intersects with work, friendships, and daily life
- The delicate balancing act of juggling caregiving responsibilities
“I think it's like juggling. All the balls are in the air and at some point, you know, you may drop one here or there. I guess it's, you know, being forgiving of yourself, of the situation, knowing it's not permanent.”
This episode is a must-listen for anyone navigating caregiving, work-life balance, and personal growth.
“You give but little of yourself when you give of your possessions. It is when you give of yourself, that you truly give.”
The Care for Carers podcast is produced by the Carers Inclusion & Diversity Group at the Parliament of NSW. The Carers group aims to celebrate, educate and highlight the complex responsibilities that come with caring for someone with a mental illness, disability or for an older person.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
The Parliament of New South
Wales stands on the traditional landsof the Gadigal people.
We pay our respects to their elders, pastand present.
We proudly acknowledge all the Aboriginalpeoples of New South Wales
and honour their enduring connectionto the lands, waters and sky of the state.
The representatives of the people of NewSouth Wales gather from various
(00:21):
Aboriginal lands across the stateto meet in this Parliament.
May the decisions made within these wallsreflect our commitment
to fostering a spirit of reconciliationand respect. And.
(00:44):
Welcome Stacy to New South WalesParliament.
Can you tell us a little bitabout yourself and share some of your,
experiences around some of the peoplewho care for in your life?
Yeah, sure.
I guess, for me, first point of,
providingcare to anyone really kind of came
about when I had my first son, Jude,who's now ten.
(01:04):
When he was born, you know, the doctors
sort of saying, oh, look, therecould be some some things going on here.
Need to do some investigation, I guess,because he was only little at the time.
You know, they don't do a whole lotwhen they're babies.
So it took a little whilefor some of the symptoms to present
and for us to, I guess, really realise thefull scope of what we were dealing with.
So it wasn't until, Jude was about two,two and a half that we got genetic testing
(01:28):
back to confirm that he has a connectivetissue called Marfan syndrome at the time.
All we really knew that, you know,what was wrong with Jude or not
wrong with Jude or different about Jude,was that he needed to wear glasses.
So I guess over time,we've come to realise
and understand the different waysin which he needs support.
Some of those things becauseof his condition, they develop over time.
(01:52):
So it's not until you kind of
get to that hurdle that you realise thatit's a thing to deal with.
So he has, you know, regular medicationthat he has to take,
you know, a lot of interventions.
So physio, chiropractor,you know, over the years
he's had lots of other differentallied health support him.
And then he has, you know,had to do a bit of a list the other day.
(02:13):
I was curiousto see how many specialists we see.
So we have 13or 14 on the books at the moment. Wow.
Which is a lot, trying to sort of juggle
those independent appointments,Very different fields.
Yeah, yeah.
So, yeah, everything from a geneticistwho kind of looks at,
Jude and his condition as a wholeand the ways in which he is beginning
(02:35):
to present or develop with his, conditionup to, you know, multiple
orthopedic surgeons, because they allspecialise in different parts of the body.
So, yeah, it'sit's it's a wide range cardiologist.
Yeah. Endocrinologist. Audiologists.
And do you, do you have a role amongstthat, you and your partner?
Or maybe it's youthat brings all that information together.
(02:57):
Is this someone that's kind of doingthe patient management or is it my brain.
Right. Okay. Yeah.Yeah. Generally it is me.
I'm pretty good at retaining informationand being able to kind of piece together
how one system of the bodymight interact with another,
or the implicationsof one type of surgery with,
you know, another part of the body thatmight be a little bit more compromised?
(03:17):
I think that's, you know,
I spent years as a journalist working onhealth education and medical research.
So I think that kind of put mein good stead and be prepared me
a little bit for Jude'sarrival into the world.
Yeah.
It's interesting
that you've got that background in that,that ability to find information.
Like you said, a journalist.
And having worked in the health sector,
(03:38):
was there any preparationyou sort of mentioned?
It was only about two years old when yourealised you'd had had some challenges.
Say what resources or what knowledgewas available to you at that time.
It's pretty limited, I guess.
You know, when he was first born,the doctor said, oh,
it could be this condition.
I said, Marfan syndromeand actually labeled it.
And, I guess my take away from that was,you know, watch and wait.
(04:00):
See what develops? See how it happens.
I did a little bit of researchto start with, to understand,
you know, what is Marfan syndrome?
You know, it's
connective tissue disorder that impactsevery part of the body, pretty much.
And just to look at, the different waysin which it could present in a person,
you know, when it's picked up,
when someone's quite young, it developsquite rapidly and, and intensely.
(04:20):
So it's in a lot of ways easierto see those things show up.
There are a lot of people in the worldthat have this particular condition
that, you know, they don't realiseuntil they're in adulthood.
So I feel, you know, in some ways it'schallenging to be faced with a diagnosis.
It's been also a blessing
to know early, because we've been ableto put in a lot of early intervention.
(04:44):
A lot of that was proactive, as parents,
not as parents, but as parents, too,showing up and wanting to,
you know, give and allow our kidto be the best they can be.
That's a really good point in termsof, the parent role, how does your role
as, Jude's mum versus his carer work?
Yeah, there was, it's an interesting
(05:07):
position to find yourself in.
I tend to, you know,see it in that grey area, I suppose, of,
you know, I feel like I'mboth at once at the same time.
But definitely as a carer,I find myself being more
inquisitive with him, asking questionsrather than telling as a parent.
So, you know, it's his body.
He has to provide consent
(05:27):
for the care that he receives,whether that's medication or treatment or,
you know, even allied health services, youknow, he has to want to do those things.
So as a carer, I find myself saying,do you want do you think you want?
How do you feel about, you know,and as a parent,
you know, I feel like I give him
what my impression is or my,my thoughts are.
(05:48):
So I tend to in a lot of ways, take, youknow, the hat off and put the other hat on
so that he can differentiate, you know,even though we don't label it and say that
I'm being your carer
now or I'm being your parent now,I think that's allowed him to develop
and make decisions for himself as well,and feel empowered to do so.
I've been fortunate enough to meet Jude.
(06:09):
He's he's a wonderful, wonderfulyoung man.
And having seen him come into Parliamentand support some of the programing we do,
he's got a lot of autonomy
and independence and and I can see thatin what you're describing today.
How how have you goneabout facilitating that?
And how important is that, that senseof agency, to instill in him as a carer?
(06:30):
Yeah, I think it started really young,you know, when they're any little, they,
they understand situations, but,you know, unable to contextualise
or find the words or even,you know, truly understand that.
I think from a young agehe was able to advocate for himself.
He used to dress up.
So every time we had a doctor'sappointment
or medical specialist appointment,he would be in a different outfit.
(06:51):
It would be everything from superheroes.
But there were always,you know, the police officer.
Oh, he was never the bad guy.
He was always the one dictating the rulesor or, you know, saving the world.
He would always dress up in those outfits.
And that for him was his,I guess, connection point in the room.
So, you know, even at 2 or 3,
we would have the specialiststalking to us as parents and saying,
(07:12):
you know, this is happeningand do you have any questions?
And while we would have questions,we always would turn to Jude
in his outfit, dressed up and say,do you have any questions?
And you know, he'll tell you nowhe's a man of science.
He has a equally inquiring mind, as I do,to try and understand what's going on
with his body so you know he’s best placedto be able to ask those questions.
(07:33):
And yeah,
we still havethose talks with specialists today
where they talk to you as the parent.
And I have to flip it and say, well, Jude’sright here in the room.
Yeah. You know.
Then you've obviously fosteredthat, fostered. That's it.
And it's probably changing that dynamicwith health professionals.
Yeah.
And the, the, the enabling that as well.
Yeah definitely.
I know like from a legal standpointyou know going to a GP
(07:55):
you have to be 14 before they can see youon your own without your parent.
I feel I have every confidence in Judethat he could go today and advocate
for himself, ask the questionshe needs to get the information he needs.
But yeah.
And the dynamic.
So you've got a younger son, Floyd.
And how does thathow does the relationship there work?
And the level of kind of care you provide.
(08:17):
There is a is what's the dynamic there.
Yeah it's very different.So Jude was my first.
So I didn't really have a barometer.
I didn't have a comparison.
I didn't really know what it wasto have a child and raise them and know
what was my role as a parent versus,you know, now what my role is as a carer.
Having Floyd, he'sthree and a half, he's rambunctious,
Um full of beans and he's everywherebut nowhere all the time.
(08:41):
So I do, I guess, have that bit of a gauge
now to kind of go, well, yeah, with Judeit is a lot more hands on.
It is a lot more intensive.
There's a lot more to considerwith him as well.
With Floyd, I can you know,he probably trashed the house
if I left him for a little while.
But yeah, I know that he would be safe.
He wouldn't hurt himself if he fell down.
(09:01):
He could get back up.
You know, it's a lot of things that I justhave every faith that he would be okay.
And with Jude,there's a lot more things that we'd like.
I said we need to consider with him,you know?
Yeah, yeah.
So if we're going out as a familyto a new location somewhere,
if we've not been before,
I do a lot more research to find out,you know, what is the space like?
What are the what's the accessibilityin terms of walking stairs?
(09:25):
All that sort of stuff.
And that's something, you know,I think he'll always have to
think about on on his own as he grows up.
Yeah.
Making things as easy as possible for him.
Even things like food and lighting,you know, just.
Yeah.
What are the
considerations thinkingabout the sort of built environment.
And I'm thinking about,you know, what we're doing at Parliament.
(09:46):
But more broadly in the built environment,
what are some considerations you think a,a useful for people to understand.
Yeah, definitely. I know with Judehe is very confident.
He'll come across very confidentin meeting the first time.
He'll he'll definitely present that way.
But put him in a very busy roomwith lots of people
and that it can becomesquite overwhelming.
With his his visionsimpacted as part of his condition.
(10:07):
And he does have a cane that he uses,but it's something
he tends to use in a busy locationor somewhere that he's not familiar with.
Maybe that might be a little bit uneven,generally so that he can
receive that space that he needs.
So the cane, you know,comes up to about his armpit.
He's not your standard ten year old size.
(10:27):
He's 168cm tall.
So his cane is about 150cm tall.
So that's about the length that he hasfrom, you know, around his hips
in front of him and slightly
off to the sides with his caneto kind of glide side to side.
So he finds that comforting.
I think in a built environment.
(10:49):
Yeah. He sees the worlda lot differently to you.
And I still remember as a young agewhen he was only really little, he,
his vision has changedbecause he's had a number of surgeries.
And he, for the first timeat two and a half, saw
the moon, saw a rainbowsaw a plane in the sky.
And it's really changed his world.
(11:10):
Before that, he was very insular. Really?
Yeah. Yeah.
So he had, his lens removed from his eyeswhen he was a toddler
because they were blocking his vision and,
yeah, that,
in essence, you know, switched his visionso he was able to see.
Yeah. Things opened. Further afield.
It did as a result impacthis close vision.
(11:30):
Yeah.
But as a parent, as a careras anybody, as a loved one
standing by and seeing someonesee something for the first time for.
Yeah it's incredible. Yeah.
And you're probably reminded of itin different ways
as his life has progressedand his health condition has changed.
Yeah. Yeah.
Look I think he's, you know,surprised himself over the years.
And it's lovelyhaving been a journalist for so long.
(11:52):
I did have the opportunityto write about him.
You know, seeing Christmas lotsfor the first time,
I did a little video montagethat still lives on, on the internet,
you know, so he,you know, him having that little piece of,
you know, who he is at that point in time,I think is really powerful to see,
you know, how far is come,how far he still has to go.
(12:12):
Yeah.
And on that sort of point on onhow far to go, what do you think
are some of the challengesthat that you face as a carer?
Yeah, I guess that'swhy we've spent so much time,
so that he can be his best advocate.
Because I won't always be here.
Yeah.
You know,
whether that's him not wanting meto be in medical appointments with me
or, you know, himwanting to do things on his own,
(12:32):
that's a definitely a real, real thingthat will happen.
So I think that some of the challengeshe'll probably be faced with,
can he get a driver's license?
And the implications of thatin terms of work, like,
he loves the idea of being a rule makerand a lawmaker and,
you know, whether that saysa police officer or as something else
(12:53):
I've tried to working here at Parliament,I think I've been able to open his mind
up to the world of democracy and the waysin which he could be a lawmaker here.
So I think he seesthat as a real opportunity for him to
do and be something.
And he's
it sounds from when we were chattingpreviously, he's got powerful imagination.
So he likes gaming and he likes all thethe world that that provides.
(13:13):
Yeah, definitely.
He's very much into tech and
he's pretty selfless.
Like as much as he has his own thingsgoing on in the world, he is still
far more interestedin making sure other people are okay
and that they have everything they need.
So, you know, he, the number of surgeriesthat he's had over the years,
(13:34):
the first thing he'll say is, well,when I'm Prime Minister or when I'm
the premier, I'm going to make surethere's more comfortable
chairs in the hospitals for everyone.
You know, he'snot just thinking about himself.
So he's always kind of thinkingabout the yeah, flow on effects.
Yeah. That's interesting.
And a lot of the carers I've spoken to,there's a there's a feeling
of huge empathy amongstthe people that are being cared for.
(13:55):
I feel that that that's a significant.
Yeah trend there.
Yeah. Yeah definitely.
Yeah.
Looking you know well I've providedcare to Jude for the last ten years.
I, you know,
both myparents have found myself in situations
where I've had to be their carersas well, often at the same time
as both of them, as well as for Jude.
So yeah, I guess, yeah.
(14:16):
People as carersnaturally care for others.
So a more empathetic can see situations
potentially or you know,might have the right words to say
to someone in their time of needthat allows them to play that role.
So yeah, that'sthat's an interesting challenge.
If you're caring for for your son,you've got all the parents
that you're worrying about.
(14:36):
How do you find time for youas a caring balance
those responsibilities and keepkeeping that sort of energy that you can?
Yeah, it's a hard one, I think.
And I most I think most people would agreethat it's I don't know
whether I've got the balance rightjust yet.
But I think that I'm doing a good jobas a carer.
I don't think I'm doing a good jobof looking
after what my needs are,but that's the role of a carer, is to put
(15:00):
aside your needs and do something that'sbigger than what you need when you are.
Yeah.
And what do you think makes, a good carer?
Listening.
Active listening? Yeah.
So not just listening to have an answer,
actually listening to understandhow someone might feel.
You don't need to be solutionsfocused all the time, you know.
(15:22):
Yeah, I think that's the hard partbecause, you know, someone
with the disabilityor caring needs often, talking
with lots of specialists or doctorsabout how to fix things, how to do things.
So just having that active listening earI think is really important.
I think, yeah, yeah.
And I think maybe being able to readbetween the lines a little bit.
So sometimes people aren't as forthrightabout what they want or need
(15:46):
because it's a lot.
It's, you know, it's hard to be honestand upfront about something really raw.
So I think it takes time just being ableto build that relationship.
And it sounded like for youthe the role of a carer was
was at once gradual.
But then it became quite sudden.
What advicewould you have people for people who,
who are finding themselves in that roleand will invariably have that,
(16:08):
whether it be with our children orrelative or friend or our elderly parents.
Yeah. You can't do everything.
You just cannot.
It's impossible, I think start smalland work your way up, you know,
focus on what the needs are of the personat the time, in the moment, and
constantly seek their
(16:28):
advice and thoughts about what they needrather than assuming.
Yeah, gotcha.
And for any managers, I'mthinking about the role that we have here
at New South Wales Parliament.
For any managers or leaders,what advice do you have for their staff
who who have a carers responsibilitythat they might have articulated or not?
Yeah. Don't be afraid to ask questions.
(16:49):
I think the morethe more we can not normalize
but understand the role that it playsor how it, you know, the
the layers in which it makes a personthe better.
I think it's, you know,the intersectionality is a lot of things,
whether it's at workor as a friend, as a family member,
you know, there's a lot therethat could be understood.
(17:09):
And I think it just startswith a question,
a genuine questionand desire to want to understand.
Yeah, that's that's a good point.
What's one thing that you'd lovefor people to understand about carers?
That is just part of who they are.
It's not like I don't,I don't like I said, I don't see
who I am as a mum and a carer and a friendand as a partner.
(17:33):
I don't feel like they're segregated.
I feel like they all sort of cross over.
And the rolethat I play as a carer for is,
you know, the same way I would treata friend or family member as well.
Yeah. Yeah.
Yeah. Okay.
And are thereany sort of negative stereotypes
that you'd love to see go I guesschallenged.
(17:53):
Yeah. Particularly in the workplace.
I mean, I've worked in other placesin the past
where it's not really understoodor realized
is something that it is quite significantin someone's life. So
I think
it being acknowledged for what it is,is, is a good thing.
I think that would be the starting pointfor being able to improve.
(18:15):
Yeah, yeah. And awareness.
Yeah. Yeah, definitely.
And and what what excites Jude about like
do you think himunderstanding his situation and his health
condition is, is part of that dynamicthat you have with him?
Yeah. Yeah. Look, itdefinitely empowers him.
He has confidence.
And you know, for someonewith a genetic condition,
(18:35):
being able to to talk about who they are,what their needs, you know,
they're all the thingswe're talking about today, you know,
that are really important to, to know.
So him having confidencein being able to do that is a huge step.
Yeah. Yeah.
And just hey,is he aware of information or materials
that he can go to outside of thethe support that you provide him.
(18:57):
So yeah we have a yeah there'sa lot of resources that he has access to.
And whether they be,
you know, family, friends or loved ones,he's got a great support network
to help him, whether he wants to askquestions of his parents or other people.
Yeah, he's pretty,savvy at finding things online as well,
you know, to be ableto learn and understand.
(19:18):
Yeah. Yeah, yeah.
He's he's very switchedon, Cuz he's, he's.
Yeah, yeah. He's an interesting young man.
I look forward to seeing how who he isshapes what he does.
Yeah definitely. Yeah.
Yeah that's and it would be very powerfulto see to see that sort of play out.
How has being a carer impacted
(19:39):
on your career, whether it be in this role
that you're in or previous roles, hasit had an impact or maybe not at all?
Yeah, I guess, you know, because I,
I tend to be a little bitI wrap it all up into parenting.
I don't want to make too much of a fussabout the things that I do
or the things that he might need, thatI need to do to help him, whether that be
medical appointmentsor, you know, crisis medical appointments.
(20:03):
Like last week.Yep, yep. Rushing off to the hospital.
Yeah.
I tend not to be out at work.
I've always kind of tried to.
Yeah, just be protective of thatand try and do what I need to do.
But I guess theredefinitely have been times in my career
where it has felt dismissedor not understood, perhaps.
(20:26):
And yeah, I just chalk that upto a lack of understanding, I guess,
and that that's more on a personal level.
That's not an organizational structuralthing.
That's more of a, you know, who youmanager is at the time.
You know, having that empathy
or understanding or listeningear to, to even pick up on the nuances.
Yeah.
Because I know we had the ironyis we rescheduled our session today,
last week for that
(20:46):
very reason that you had to to tendto some important medical support there.
And, and I think some for me, like havingthat awareness is, is really important.
But we're only sort of got tothat after we we sort of spoke at length.
It's not somethingI immediately knew about you.
So how important do you think it isfor carers to kind of be able
be comfortable,
to be able to talk about, which might besome challenging situations?
(21:10):
Yeah.
I think what we're doing heretoday, the storytelling, the
it opens the door,it allows people to feel safe,
whether they approach you
or approach me or someone elsethat might be on this podcast
just to have that conduitor that connection.
Yeah, yeah,I think that's really important.
That's great.
And can you think of any significant,
(21:31):
movies or books or moments that, that
you've gotten, kind of motivation
from or that you've identified with that,that relate to your carers?
Well. Not really, I,
I don't have a lot of time to watchTV, read books or watch movies.
I feel that.
And I think that that would existeven if I didn't have Jude, you know,
(21:52):
with his medical condition.
I think just as a, you know,living in the city, busy, busy living.
Yeah, yeah, I tend to put that stuffat the tail end of the day or weekend.
Yeah.
So there's nothing that kind of springsto mind
specifically around that. Yeah.
And how do you manage that balance like,I mean, you do so amazingly here at work
(22:12):
and knowing you've got all of that goingon, I've had moments in my life where I've
had carer roles where you sort of jugglethose things and you get by what's what's
the secret for you around what successlooks like as a carer and managing that?
Yeah, I think it's like jugglingall the balls are in the air
and at some point, you know,you drop one here or there.
(22:32):
I guess it's, you know, being forgivingof yourself, of the situation,
knowing it's not permanent.
Big things for me.
I, you know, I can do everything and beeverything, but just not all at once.
Yeah, yeah.
Yeah.
Something invariably something'sgoing to have to go.
Yeah.
And it is. It's just about being agile,being able to pivot.
You know, I don't knowif it's all the years in the newsroom,
(22:54):
or if it's the type of personthat I am as well.
I definitely am very goodat compartmentalising.
So, you know,
back in the day in the newsroom,I'd cover some sort of horrific incident.
I was very good at being ableto put it in a box
and feel like I'd addressed it,so not leave any kind of lingering
feelings or emotions.
And I still feel like I do that.
(23:15):
You know, when I'm at work, I'm at work,I show up, you know, I'm here.
I'm here for work.
And, you know, as as parents, wewe share that role equally.
We, you know, this
when I'm in the office, generally it'sit's my turn to shine in the workplace.
And then when I'm working from home, it'sgreat having that flexibility.
I am able to be that person,
that the parent that shows upif the kids need it, if anything happens.
(23:37):
Yeah. It's fantastic. Yeah.
You sort of talked about like what I seeis a career superpower for you.
It's being able to compartmentalise.
Yeah. And manage that really effectively.
I think that's it's an a it'sit's easy for you.
It might not necessarily countas easily for others.
Yeah.
That's a good bit of an awarenessand advice.
Definitely. Okay.
(23:58):
Is there anything elsethat you'd like to add? Or.
There was a quote that I wrote downthat I just thought was really lovely
to kind of capture,
carers
the, the caring role that people provide,whether that's formally or informally.
So it goes like this.
You give but littlewhen you give of your possessions.
It is when you give of yourselfthat you truly give
(24:22):
that simple but just.
Yeah, so powerful.
I like that,I like that, and it's it's often
we know how important it isto provide that
and how how empowering it is for usas individuals to connect.
And I think often like your situation,you're
sort of thrust into thatand like we all find ourselves,
I think that's a really powerful quote.
Yeah, definitely. Yeah.
(24:43):
That's great.Thanks for your time, Stacy.
No worries.
Any time.
The Parliament of New South
Wales stands on the traditional landsof the Gadigal people.
We pay our respects to their elders, pastand present.
We proudly acknowledge all the Aboriginalpeoples of New South Wales
and honour their enduring connectionto the lands, waters and sky of the state.
The representatives of the people of NewSouth Wales gather from various
(00:21):
Aboriginal lands across the stateto meet in this Parliament.
May the decisions made within these wallsreflect our commitment
to fostering a spirit of reconciliationand respect. And.
(00:44):
Welcome Stacy to New South WalesParliament.
Can you tell us a little bitabout yourself and share some of your,
experiences around some of the peoplewho care for in your life?
Yeah, sure.
I guess, for me, first point of,
providingcare to anyone really kind of came
about when I had my first son, Jude,who's now ten.
(01:04):
When he was born, you know, the doctors
sort of saying, oh, look, therecould be some some things going on here.
Need to do some investigation, I guess,because he was only little at the time.
You know, they don't do a whole lotwhen they're babies.
So it took a little whilefor some of the symptoms to present
and for us to, I guess, really realise thefull scope of what we were dealing with.
So it wasn't until, Jude was about two,two and a half that we got genetic testing
(01:28):
back to confirm that he has a connectivetissue called Marfan syndrome at the time.
All we really knew that, you know,what was wrong with Jude or not
wrong with Jude or different about Jude,was that he needed to wear glasses.
So I guess over time,we've come to realise
and understand the different waysin which he needs support.
Some of those things becauseof his condition, they develop over time.
(01:52):
So it's not until you kind of
get to that hurdle that you realise thatit's a thing to deal with.
So he has, you know, regular medicationthat he has to take,
you know, a lot of interventions.
So physio, chiropractor,you know, over the years
he's had lots of other differentallied health support him.
And then he has, you know,had to do a bit of a list the other day.
(02:13):
I was curiousto see how many specialists we see.
So we have 13or 14 on the books at the moment. Wow.
Which is a lot, trying to sort of juggle
those independent appointments,Very different fields.
Yeah, yeah.
So, yeah, everything from a geneticistwho kind of looks at,
Jude and his condition as a wholeand the ways in which he is beginning
(02:35):
to present or develop with his, conditionup to, you know, multiple
orthopedic surgeons, because they allspecialise in different parts of the body.
So, yeah, it'sit's it's a wide range cardiologist.
Yeah. Endocrinologist. Audiologists.
And do you, do you have a role amongstthat, you and your partner?
Or maybe it's youthat brings all that information together.
(02:57):
Is this someone that's kind of doingthe patient management or is it my brain.
Right. Okay. Yeah.Yeah. Generally it is me.
I'm pretty good at retaining informationand being able to kind of piece together
how one system of the bodymight interact with another,
or the implicationsof one type of surgery with,
you know, another part of the body thatmight be a little bit more compromised?
(03:17):
I think that's, you know,
I spent years as a journalist working onhealth education and medical research.
So I think that kind of put mein good stead and be prepared me
a little bit for Jude'sarrival into the world.
Yeah.
It's interesting
that you've got that background in that,that ability to find information.
Like you said, a journalist.
And having worked in the health sector,
(03:38):
was there any preparationyou sort of mentioned?
It was only about two years old when yourealised you'd had had some challenges.
Say what resources or what knowledgewas available to you at that time.
It's pretty limited, I guess.
You know, when he was first born,the doctor said, oh,
it could be this condition.
I said, Marfan syndromeand actually labeled it.
And, I guess my take away from that was,you know, watch and wait.
(04:00):
See what develops? See how it happens.
I did a little bit of researchto start with, to understand,
you know, what is Marfan syndrome?
You know, it's
connective tissue disorder that impactsevery part of the body, pretty much.
And just to look at, the different waysin which it could present in a person,
you know, when it's picked up,
when someone's quite young, it developsquite rapidly and, and intensely.
(04:20):
So it's in a lot of ways easierto see those things show up.
There are a lot of people in the worldthat have this particular condition
that, you know, they don't realiseuntil they're in adulthood.
So I feel, you know, in some ways it'schallenging to be faced with a diagnosis.
It's been also a blessing
to know early, because we've been ableto put in a lot of early intervention.
(04:44):
A lot of that was proactive, as parents,
not as parents, but as parents, too,showing up and wanting to,
you know, give and allow our kidto be the best they can be.
That's a really good point in termsof, the parent role, how does your role
as, Jude's mum versus his carer work?
Yeah, there was, it's an interesting
(05:07):
position to find yourself in.
I tend to, you know,see it in that grey area, I suppose, of,
you know, I feel like I'mboth at once at the same time.
But definitely as a carer,I find myself being more
inquisitive with him, asking questionsrather than telling as a parent.
So, you know, it's his body.
He has to provide consent
(05:27):
for the care that he receives,whether that's medication or treatment or,
you know, even allied health services, youknow, he has to want to do those things.
So as a carer, I find myself saying,do you want do you think you want?
How do you feel about, you know,and as a parent,
you know, I feel like I give him
what my impression is or my,my thoughts are.
(05:48):
So I tend to in a lot of ways, take, youknow, the hat off and put the other hat on
so that he can differentiate, you know,even though we don't label it and say that
I'm being your carer
now or I'm being your parent now,I think that's allowed him to develop
and make decisions for himself as well,and feel empowered to do so.
I've been fortunate enough to meet Jude.
(06:09):
He's he's a wonderful, wonderfulyoung man.
And having seen him come into Parliamentand support some of the programing we do,
he's got a lot of autonomy
and independence and and I can see thatin what you're describing today.
How how have you goneabout facilitating that?
And how important is that, that senseof agency, to instill in him as a carer?
(06:30):
Yeah, I think it started really young,you know, when they're any little, they,
they understand situations, but,you know, unable to contextualise
or find the words or even,you know, truly understand that.
I think from a young agehe was able to advocate for himself.
He used to dress up.
So every time we had a doctor'sappointment
or medical specialist appointment,he would be in a different outfit.
(06:51):
It would be everything from superheroes.
But there were always,you know, the police officer.
Oh, he was never the bad guy.
He was always the one dictating the rulesor or, you know, saving the world.
He would always dress up in those outfits.
And that for him was his,I guess, connection point in the room.
So, you know, even at 2 or 3,
we would have the specialiststalking to us as parents and saying,
(07:12):
you know, this is happeningand do you have any questions?
And while we would have questions,we always would turn to Jude
in his outfit, dressed up and say,do you have any questions?
And you know, he'll tell you nowhe's a man of science.
He has a equally inquiring mind, as I do,to try and understand what's going on
with his body so you know he’s best placedto be able to ask those questions.
(07:33):
And yeah,
we still havethose talks with specialists today
where they talk to you as the parent.
And I have to flip it and say, well, Jude’sright here in the room.
Yeah. You know.
Then you've obviously fosteredthat, fostered. That's it.
And it's probably changing that dynamicwith health professionals.
Yeah.
And the, the, the enabling that as well.
Yeah definitely.
I know like from a legal standpointyou know going to a GP
(07:55):
you have to be 14 before they can see youon your own without your parent.
I feel I have every confidence in Judethat he could go today and advocate
for himself, ask the questionshe needs to get the information he needs.
But yeah.
And the dynamic.
So you've got a younger son, Floyd.
And how does thathow does the relationship there work?
And the level of kind of care you provide.
(08:17):
There is a is what's the dynamic there.
Yeah it's very different.So Jude was my first.
So I didn't really have a barometer.
I didn't have a comparison.
I didn't really know what it wasto have a child and raise them and know
what was my role as a parent versus,you know, now what my role is as a carer.
Having Floyd, he'sthree and a half, he's rambunctious,
Um full of beans and he's everywherebut nowhere all the time.
(08:41):
So I do, I guess, have that bit of a gauge
now to kind of go, well, yeah, with Judeit is a lot more hands on.
It is a lot more intensive.
There's a lot more to considerwith him as well.
With Floyd, I can you know,he probably trashed the house
if I left him for a little while.
But yeah, I know that he would be safe.
He wouldn't hurt himself if he fell down.
(09:01):
He could get back up.
You know, it's a lot of things that I justhave every faith that he would be okay.
And with Jude,there's a lot more things that we'd like.
I said we need to consider with him,you know?
Yeah, yeah.
So if we're going out as a familyto a new location somewhere,
if we've not been before,
I do a lot more research to find out,you know, what is the space like?
What are the what's the accessibilityin terms of walking stairs?
(09:25):
All that sort of stuff.
And that's something, you know,I think he'll always have to
think about on on his own as he grows up.
Yeah.
Making things as easy as possible for him.
Even things like food and lighting,you know, just.
Yeah.
What are the
considerations thinkingabout the sort of built environment.
And I'm thinking about,you know, what we're doing at Parliament.
(09:46):
But more broadly in the built environment,
what are some considerations you think a,a useful for people to understand.
Yeah, definitely. I know with Judehe is very confident.
He'll come across very confidentin meeting the first time.
He'll he'll definitely present that way.
But put him in a very busy roomwith lots of people
and that it can becomesquite overwhelming.
With his his visionsimpacted as part of his condition.
(10:07):
And he does have a cane that he uses,but it's something
he tends to use in a busy locationor somewhere that he's not familiar with.
Maybe that might be a little bit uneven,generally so that he can
receive that space that he needs.
So the cane, you know,comes up to about his armpit.
He's not your standard ten year old size.
(10:27):
He's 168cm tall.
So his cane is about 150cm tall.
So that's about the length that he hasfrom, you know, around his hips
in front of him and slightly
off to the sides with his caneto kind of glide side to side.
So he finds that comforting.
I think in a built environment.
(10:49):
Yeah. He sees the worlda lot differently to you.
And I still remember as a young agewhen he was only really little, he,
his vision has changedbecause he's had a number of surgeries.
And he, for the first timeat two and a half, saw
the moon, saw a rainbowsaw a plane in the sky.
And it's really changed his world.
(11:10):
Before that, he was very insular. Really?
Yeah. Yeah.
So he had, his lens removed from his eyeswhen he was a toddler
because they were blocking his vision and,
yeah, that,
in essence, you know, switched his visionso he was able to see.
Yeah. Things opened. Further afield.
It did as a result impacthis close vision.
(11:30):
Yeah.
But as a parent, as a careras anybody, as a loved one
standing by and seeing someonesee something for the first time for.
Yeah it's incredible. Yeah.
And you're probably reminded of itin different ways
as his life has progressedand his health condition has changed.
Yeah. Yeah.
Look I think he's, you know,surprised himself over the years.
And it's lovelyhaving been a journalist for so long.
(11:52):
I did have the opportunityto write about him.
You know, seeing Christmas lotsfor the first time,
I did a little video montagethat still lives on, on the internet,
you know, so he,you know, him having that little piece of,
you know, who he is at that point in time,I think is really powerful to see,
you know, how far is come,how far he still has to go.
(12:12):
Yeah.
And on that sort of point on onhow far to go, what do you think
are some of the challengesthat that you face as a carer?
Yeah, I guess that'swhy we've spent so much time,
so that he can be his best advocate.
Because I won't always be here.
Yeah.
You know,
whether that's him not wanting meto be in medical appointments with me
or, you know, himwanting to do things on his own,
(12:32):
that's a definitely a real, real thingthat will happen.
So I think that some of the challengeshe'll probably be faced with,
can he get a driver's license?
And the implications of thatin terms of work, like,
he loves the idea of being a rule makerand a lawmaker and,
you know, whether that saysa police officer or as something else
(12:53):
I've tried to working here at Parliament,I think I've been able to open his mind
up to the world of democracy and the waysin which he could be a lawmaker here.
So I think he seesthat as a real opportunity for him to
do and be something.
And he's
it sounds from when we were chattingpreviously, he's got powerful imagination.
So he likes gaming and he likes all thethe world that that provides.
(13:13):
Yeah, definitely.
He's very much into tech and
he's pretty selfless.
Like as much as he has his own thingsgoing on in the world, he is still
far more interestedin making sure other people are okay
and that they have everything they need.
So, you know, he, the number of surgeriesthat he's had over the years,
(13:34):
the first thing he'll say is, well,when I'm Prime Minister or when I'm
the premier, I'm going to make surethere's more comfortable
chairs in the hospitals for everyone.
You know, he'snot just thinking about himself.
So he's always kind of thinkingabout the yeah, flow on effects.
Yeah. That's interesting.
And a lot of the carers I've spoken to,there's a there's a feeling
of huge empathy amongstthe people that are being cared for.
(13:55):
I feel that that that's a significant.
Yeah trend there.
Yeah. Yeah definitely.
Yeah.
Looking you know well I've providedcare to Jude for the last ten years.
I, you know,
both myparents have found myself in situations
where I've had to be their carersas well, often at the same time
as both of them, as well as for Jude.
So yeah, I guess, yeah.
(14:16):
People as carersnaturally care for others.
So a more empathetic can see situations
potentially or you know,might have the right words to say
to someone in their time of needthat allows them to play that role.
So yeah, that'sthat's an interesting challenge.
If you're caring for for your son,you've got all the parents
that you're worrying about.
(14:36):
How do you find time for youas a caring balance
those responsibilities and keepkeeping that sort of energy that you can?
Yeah, it's a hard one, I think.
And I most I think most people would agreethat it's I don't know
whether I've got the balance rightjust yet.
But I think that I'm doing a good jobas a carer.
I don't think I'm doing a good jobof looking
after what my needs are,but that's the role of a carer, is to put
(15:00):
aside your needs and do something that'sbigger than what you need when you are.
Yeah.
And what do you think makes, a good carer?
Listening.
Active listening? Yeah.
So not just listening to have an answer,
actually listening to understandhow someone might feel.
You don't need to be solutionsfocused all the time, you know.
(15:22):
Yeah, I think that's the hard partbecause, you know, someone
with the disabilityor caring needs often, talking
with lots of specialists or doctorsabout how to fix things, how to do things.
So just having that active listening earI think is really important.
I think, yeah, yeah.
And I think maybe being able to readbetween the lines a little bit.
So sometimes people aren't as forthrightabout what they want or need
(15:46):
because it's a lot.
It's, you know, it's hard to be honestand upfront about something really raw.
So I think it takes time just being ableto build that relationship.
And it sounded like for youthe the role of a carer was
was at once gradual.
But then it became quite sudden.
What advicewould you have people for people who,
who are finding themselves in that roleand will invariably have that,
(16:08):
whether it be with our children orrelative or friend or our elderly parents.
Yeah. You can't do everything.
You just cannot.
It's impossible, I think start smalland work your way up, you know,
focus on what the needs are of the personat the time, in the moment, and
constantly seek their
(16:28):
advice and thoughts about what they needrather than assuming.
Yeah, gotcha.
And for any managers, I'mthinking about the role that we have here
at New South Wales Parliament.
For any managers or leaders,what advice do you have for their staff
who who have a carers responsibilitythat they might have articulated or not?
Yeah. Don't be afraid to ask questions.
(16:49):
I think the morethe more we can not normalize
but understand the role that it playsor how it, you know, the
the layers in which it makes a personthe better.
I think it's, you know,the intersectionality is a lot of things,
whether it's at workor as a friend, as a family member,
you know, there's a lot therethat could be understood.
(17:09):
And I think it just startswith a question,
a genuine questionand desire to want to understand.
Yeah, that's that's a good point.
What's one thing that you'd lovefor people to understand about carers?
That is just part of who they are.
It's not like I don't,I don't like I said, I don't see
who I am as a mum and a carer and a friendand as a partner.
(17:33):
I don't feel like they're segregated.
I feel like they all sort of cross over.
And the rolethat I play as a carer for is,
you know, the same way I would treata friend or family member as well.
Yeah. Yeah.
Yeah. Okay.
And are thereany sort of negative stereotypes
that you'd love to see go I guesschallenged.
(17:53):
Yeah. Particularly in the workplace.
I mean, I've worked in other placesin the past
where it's not really understoodor realized
is something that it is quite significantin someone's life. So
I think
it being acknowledged for what it is,is, is a good thing.
I think that would be the starting pointfor being able to improve.
(18:15):
Yeah, yeah. And awareness.
Yeah. Yeah, definitely.
And and what what excites Jude about like
do you think himunderstanding his situation and his health
condition is, is part of that dynamicthat you have with him?
Yeah. Yeah. Look, itdefinitely empowers him.
He has confidence.
And you know, for someonewith a genetic condition,
(18:35):
being able to to talk about who they are,what their needs, you know,
they're all the thingswe're talking about today, you know,
that are really important to, to know.
So him having confidencein being able to do that is a huge step.
Yeah. Yeah.
And just hey,is he aware of information or materials
that he can go to outside of thethe support that you provide him.
(18:57):
So yeah we have a yeah there'sa lot of resources that he has access to.
And whether they be,
you know, family, friends or loved ones,he's got a great support network
to help him, whether he wants to askquestions of his parents or other people.
Yeah, he's pretty,savvy at finding things online as well,
you know, to be ableto learn and understand.
(19:18):
Yeah. Yeah, yeah.
He's he's very switchedon, Cuz he's, he's.
Yeah, yeah. He's an interesting young man.
I look forward to seeing how who he isshapes what he does.
Yeah definitely. Yeah.
Yeah that's and it would be very powerfulto see to see that sort of play out.
How has being a carer impacted
(19:39):
on your career, whether it be in this role
that you're in or previous roles, hasit had an impact or maybe not at all?
Yeah, I guess, you know, because I,
I tend to be a little bitI wrap it all up into parenting.
I don't want to make too much of a fussabout the things that I do
or the things that he might need, thatI need to do to help him, whether that be
medical appointmentsor, you know, crisis medical appointments.
(20:03):
Like last week.Yep, yep. Rushing off to the hospital.
Yeah.
I tend not to be out at work.
I've always kind of tried to.
Yeah, just be protective of thatand try and do what I need to do.
But I guess theredefinitely have been times in my career
where it has felt dismissedor not understood, perhaps.
(20:26):
And yeah, I just chalk that upto a lack of understanding, I guess,
and that that's more on a personal level.
That's not an organizational structuralthing.
That's more of a, you know, who youmanager is at the time.
You know, having that empathy
or understanding or listeningear to, to even pick up on the nuances.
Yeah.
Because I know we had the ironyis we rescheduled our session today,
last week for that
(20:46):
very reason that you had to to tendto some important medical support there.
And, and I think some for me, like havingthat awareness is, is really important.
But we're only sort of got tothat after we we sort of spoke at length.
It's not somethingI immediately knew about you.
So how important do you think it isfor carers to kind of be able
be comfortable,
to be able to talk about, which might besome challenging situations?
(21:10):
Yeah.
I think what we're doing heretoday, the storytelling, the
it opens the door,it allows people to feel safe,
whether they approach you
or approach me or someone elsethat might be on this podcast
just to have that conduitor that connection.
Yeah, yeah,I think that's really important.
That's great.
And can you think of any significant,
(21:31):
movies or books or moments that, that
you've gotten, kind of motivation
from or that you've identified with that,that relate to your carers?
Well. Not really, I,
I don't have a lot of time to watchTV, read books or watch movies.
I feel that.
And I think that that would existeven if I didn't have Jude, you know,
(21:52):
with his medical condition.
I think just as a, you know,living in the city, busy, busy living.
Yeah, yeah, I tend to put that stuffat the tail end of the day or weekend.
Yeah.
So there's nothing that kind of springsto mind
specifically around that. Yeah.
And how do you manage that balance like,I mean, you do so amazingly here at work
(22:12):
and knowing you've got all of that goingon, I've had moments in my life where I've
had carer roles where you sort of jugglethose things and you get by what's what's
the secret for you around what successlooks like as a carer and managing that?
Yeah, I think it's like jugglingall the balls are in the air
and at some point, you know,you drop one here or there.
(22:32):
I guess it's, you know, being forgivingof yourself, of the situation,
knowing it's not permanent.
Big things for me.
I, you know, I can do everything and beeverything, but just not all at once.
Yeah, yeah.
Yeah.
Something invariably something'sgoing to have to go.
Yeah.
And it is. It's just about being agile,being able to pivot.
You know, I don't knowif it's all the years in the newsroom,
(22:54):
or if it's the type of personthat I am as well.
I definitely am very goodat compartmentalising.
So, you know,
back in the day in the newsroom,I'd cover some sort of horrific incident.
I was very good at being ableto put it in a box
and feel like I'd addressed it,so not leave any kind of lingering
feelings or emotions.
And I still feel like I do that.
(23:15):
You know, when I'm at work, I'm at work,I show up, you know, I'm here.
I'm here for work.
And, you know, as as parents, wewe share that role equally.
We, you know, this
when I'm in the office, generally it'sit's my turn to shine in the workplace.
And then when I'm working from home, it'sgreat having that flexibility.
I am able to be that person,
that the parent that shows upif the kids need it, if anything happens.
(23:37):
Yeah. It's fantastic. Yeah.
You sort of talked about like what I seeis a career superpower for you.
It's being able to compartmentalise.
Yeah. And manage that really effectively.
I think that's it's an a it'sit's easy for you.
It might not necessarily countas easily for others.
Yeah.
That's a good bit of an awarenessand advice.
Definitely. Okay.
(23:58):
Is there anything elsethat you'd like to add? Or.
There was a quote that I wrote downthat I just thought was really lovely
to kind of capture,
carers
the, the caring role that people provide,whether that's formally or informally.
So it goes like this.
You give but littlewhen you give of your possessions.
It is when you give of yourselfthat you truly give
(24:22):
that simple but just.
Yeah, so powerful.
I like that,I like that, and it's it's often
we know how important it isto provide that
and how how empowering it is for usas individuals to connect.
And I think often like your situation,you're
sort of thrust into thatand like we all find ourselves,
I think that's a really powerful quote.
Yeah, definitely. Yeah.
(24:43):
That's great.Thanks for your time, Stacy.
No worries.
Any time.
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