The Caregivers Podcast

In this episode of The Caregivers Podcast, host Dr. Mark sits down with Cynthia Neilson to discuss the emotional and practical realities of raising a child with a rare heart-lung condition.

Cynthia shares her journey from the initial shock of a complex diagnosis at SickKids to the "stress tests" of everyday parenting—navigating medical equipment at bedtime, setting boundaries with school, and eventually empowering her daughter, Clare, to become her own advocate. It is a story of resilience, finding peace in the face of uncertainty, and the vital importance of caregiver communities.

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What is The Caregivers Podcast?

The cost & courage of caring - stories that spark resilience.

Welcome to the Caregivers Podcast.

I'm your host, Dr.

Mark Ropeleski.

You can call me Dr.

Mark.

Many caregiving stories don't

begin with conviction.

They begin with a quiet sense

that something isn't right.

Today's guest, Cynthia Nielsen,

learned that her daughter,

Claire, was living with a rare and

serious heart-lung condition, one

that came with a

timeline no parent is ever

prepared to hear.

This conversation isn't about

diagnosis.

Today's conversation is about what

happens after, what you're told,

what you're not told,

and how you raise a child honestly

without stealing their childhood.

Cynthia, welcome to the

podcast.

Cynthia Nielsen, welcome to the

Caregivers Podcast.

Thanks, Mark.

Cynthia, do you remember

the exact moment when you realized

that this wasn't going to be a

small or temporary issue with your

daughter?

I did.

I can remember it so clearly like

it was yesterday.

It was, I'm trying to think back,

it was 13 years ago, so quite a

while ago.

My daughter had an earache, so she

was around two at

the time.

I took her to the hospital.

They were, you know, looking in

her ears.

She had an ear

infection, pretty standard for a

two-year-old.

But a med student came in and

asked like, oh, can I just do

like a routine checkup on like to

practice like in the pediatric

space?

I said, sure, no problem.

And

she started listening and she

said, oh, her heart just doesn't

sound quite right.

I think I'm going to

refer you to a cardiologist.

I thought it was maybe overkill

because, I don't know, she was a

student and

I'd never really, there had been

no other issues with Claire.

And so we were referred to have an

ultrasound done.

And I think that was when the

moment I knew things were going to

forever be

different.

The ultrasound technician started

doing the ultrasound and she said,

well, obviously, you

know, Claire has a very large hole

in her heart.

And at that moment, we were

unaware of that.

And my

heart sort of sank.

And I looked at her and I think

she looked at me and we had this

moment of, I think

she was a little stressed that she

had relayed this information.

And I was stressed hearing this

information.

And I knew from then things would

be potentially different forever.

So moving forward a little bit

then, so what was Claire's

diagnosis eventually?

And how was it explained

to you in the room?

So Claire is a bit of a

complicated diagnosis.

So the moment I just described,

she was diagnosed with a large

ventricular septal defect, which

they eventually repaired

surgically.

So we were sort of immediately

sent to sick kids.

So that's a hole between the two

main chambers of the heart, the

two ventricles.

Correct.

Yes.

Okay.

Yeah.

So we were referred to sick kids.

We saw them, I think the next day.

They did some exploratory

testing.

Yes, she did have quite a large

hole.

With that, testing also revealed

that she had

pulmonary arterial hypertension,

which is called group one

pulmonary hypertension.

It's basically

when there's high pressures in the

blood vessels going from the heart

to the lungs.

It's a chronic

disease.

It's a rare disease.

There's about 2,000 to 5,000

Canadians who have it.

That's the group

one.

There is five groups.

And so her diagnosis was, I guess,

those two things.

The plan was to

surgically repair the hole with

the hopes that the pulmonary

hypertension would resolve itself.

In terms of how it was

communicated to us, we obviously

were already aware of the hole.

It was nice to have like a bit

more of an explanation.

It was, they assumed she was born

that way.

The pulmonary hypertension was

idiopathic, so they didn't know

what caused it.

I would say they didn't...

It wasn't caused by the hole.

They don't know.

They kind of described it as like

a chicken and the egg.

Did the hole create the

pulmonary hypertension or did the

pulmonary hypertension create the

hole?

Like, I think they just,

it's unknown.

They did a really good job of

explaining in sort of like

layman's terms what was happening

and

what the diagnosis was.

We were also immediately assigned

a child life specialist.

They have a team

at SickKids who work with children

and explain things in very

simplistic terms and then support

your child in various tests

throughout.

And they entered the room as well.

And I mean, it's great

for kids to understand things in

an easy way, but we also needed it

as well.

I needed to hear it a few times.

But it was good.

I felt really well-informed, which

was reassuring.

I think I'm like a

knowledge-hungry type person.

So knowledge was power to me at

the moment.

Especially with your daughter

there.

Yeah.

And that was at SickKids Hospital

in Toronto.

Yeah.

So our listeners understand when

we talk about pulmonary

hypertension, the right side of

our

heart part pumps blood to the

lungs.

And when there's high pressures in

the vessels of the lungs,

the heart has to work a lot harder

to get the blood there.

And it has effects on the heart.

At some point in that early

conversation, timelines must have

entered as a topic.

What were you told

even then?

Or could you be told anything to

assuage all the racing thoughts

about how long Claire might

live?

And what was the scariest part of

that conversation as a young

parent?

Yeah.

That was my very first question

is, is she going to survive this?

We, I would say medical

professionals tread cautiously

when giving timeframes.

I kept hearing

the phrase, we don't have a

crystal ball, which, you know, I

guess is reassuring, but

frustrating as

a parent.

I think you just want the answers.

And it wasn't that simple.

They had told us that

they wanted to go in and close the

hole.

And that if we did not pursue

medical intervention and do that,

her lifespan would be around 12

years.

What the recommendation was, was

to go and

put her on a course of medication

for approximately a year.

Because at the time of diagnosis,

the

pressures were too high in her

heart to actually safely do open

heart surgery.

So the idea of waiting

a year to wait and see how things

were going to be and if surgery

was going to be possible was

extremely frustrating.

It was anxiety provoking.

It was like an emotional roller

coaster.

They did say, and then I obviously

asked the question of, you know,

if we do the surgery and things go

well, like what will her lifespan

or quality of life look like then?

And at that point, they couldn't

really

provide an answer.

They said like, it's

unpredictable.

It depends on how the surgery

goes.

There's a lot of

factors.

She's young.

Things will change with growth.

So that unknown, I think, was

probably

for me the, the, the worst, the

worst part of it.

So that year of waiting on

medication with the medication,

hopefully reducing the pressures

and

the strain on the heart.

Uh, there were so many

conversations, but in the days

that followed after

some of these conversations,

especially early on, what was the

first memory you have of ordinary

moments that suddenly didn't feel

ordinary anymore when thinking

about your child and your family

life?

Yeah.

I can remember a couple of days

after we'd come home from the

hospital, after, you know,

quite a few days of tests and I

was pregnant at the time.

Um, and I was exhausted and, um,

I remember putting Claire to bed

and bedtime was always like a

very,

you know, fun and like joyful

time.

My husband and I both work full

time.

So, you know, she was in

daycare at the time.

That window of when you return

home and when they go to bed is

very small at that age.

Um, so it was usually, yeah.

So it was usually filled with

like, you know, uh, negotiations

about

dinner, bath, book, all those

things.

Bedtimes looked extremely

different in those early days.

So Claire had been, um, she was

using oxygen at night.

So we had to explain to her like

what this

machine was.

She was, you know, tethered to

this machine that she couldn't get

herself to the bathroom.

We had, um, they tape, like sort

of use medical tape on small

children so they don't pull it

off.

So there was like all this

equipment on her.

Um, there was an entire routine

around medication.

Um, it just, it felt like the

hospital had like invaded my

personal space.

Like bedtime felt like

a medical event.

Um, and it just really, um, I, I

kept having thoughts about how

many more

day-to-day activities are going to

look like this and how can we, as

parents, my husband and I make

things feel as normal as possible

for a two-year-old who really has

no comprehension of what's going

on.

And those conversations were, were

kind of meaningless at that time

to her and with her.

You know, before Claire's

diagnosis, you've said before that

you had a gut feeling that

something wasn't right.

Looking back now, what were you

noticing that you just didn't have

language for to describe it at the

time?

Yeah, I've done a lot of like

reflecting on this.

I think

I was a first-time parent with

Claire.

Um, I think when I, when she was

born, I tried breastfeeding.

I was unable to breastfeed.

Um, we spent a lot of time at,

with a lactation consultant at the

hospital

and they kept saying like, we're

not sure what's going on.

She just doesn't seem to want to

like,

she seems like not strong enough

or like she's just not trusted in

eating.

I thought, okay,

I guess maybe some kids just,

that's just how it goes.

I, I didn't know what I didn't

know.

Um,

so I felt like this seems strange.

Um, but that's fine.

Um, she also was like not hitting

developmental

milestones like other children.

So she never really crawled.

Um, she did walk, but it was a bit

delayed.

I would say she, um, she slept all

the time.

So I remember I had, you know,

other moms who had

children the same age and I was

hearing all the horror stories

about like sleepless nights and

colic

and they were exhausted.

And I was like, I don't know,

Claire just sleeps all the time,

like 24 hours

a day.

Like I have to wake her to feed

her.

And they're like, oh, that's,

you're so lucky.

Um, but

I mean, in looking back, like I

was not so lucky, like she was

just so weak.

Um, and then I think that

was the determination around

breastfeeding.

It just takes a lot more, um,

strength from a baby

to breastfeed than bottle feed.

Um, and so she just didn't really

have the stamina at one

point.

I just felt like, I don't know,

she just doesn't seem quite right.

And of course I

talked to our pediatrician and he

said, oh, no, no, you're just a

first time mom.

You're just

worrying.

And I thought, okay, yeah, no, I'm

paranoid.

Um, I'm sure everything's fine and

let

it go.

And then, you know, things just

kind of carried on.

I mean, I wish I knew what I knew

then, but, um, I would say like

medical intervention was still

pretty timely for us.

Um, however,

if we had known what we knew, they

probably would have repaired the,

the VSD, um, in utero.

So we may

have had better outcomes with the

pulmonary hypertension, but we, we

might not have.

Um,

it's so hard to know, but, um,

yeah, I just felt like something

wasn't quite right, but it's hard

as a first time parent.

Um, you're so exhausted already.

You're second guessing yourself.

You're tired.

Am I overreacting?

Yeah.

I was pregnant.

So I thought, oh my goodness, the

hormones and

all the other things, like it's

just in my mind.

Cynthia, what happens inside a

parent?

We think now between years two and

three,

what happens inside a parent when

the future you had been quietly

imagining

for you, your family, for Claire

suddenly collapses?

I think there was like a whole

host of emotions and I think every

day brought on an unpredictable

feeling.

So I think it, you know, it

started as, you know, shock and

numbness, um, to,

I have a very sort of like type A

personality.

I was like on the path to like

getting the answers and

putting all the things in place

sort of on that autopilot and very

effective at compartmentalizing.

I think for me to, to survive that

year, it couldn't be front and

center in my whole world.

Um,

I had a lot of doubt and blame

about, did I cause this?

Is there something genetic in my

body or my

husband's that, you know, has

created this?

Um, there was fear, um, guilt, uh,

anger, like why me?

I'm a healthy parent.

You know, I, I don't smoke, I

don't do drugs.

I drink relatively little.

exercise every day.

I eat healthy.

Um, I try to balance work stress.

Like I felt like I've done

everything I could do to produce a

healthy child yet this has

happened.

So I think it was, I was

frustrated.

Um, and I think to cope in that

year, like I said, I, I did a lot,

a lot of compartmentalizing.

I was still working full-time as

well as my husband.

I was pregnant.

Um, and I, I think I,

I started seeing a therapist, um,

and that really helped.

I'm fortunate that I had really

good social

support.

So I was really in it with my

husband.

Um, at the time we had both had

living parents.

Um,

none of our family lives in

Toronto, but quite close, just a

couple of hours away in Ontario.

Um, so we had that network.

Um, I had like a, an excellent

community of friends.

Um, and so I think

I just really tried to learn to

lean on people when I, when I

needed to.

And, um, it was every day brought

a bit of a different experience,

but I think a part of you just, I

don't know, it, uh, it's a worry

that

will sit in my head all of the

time and just trying to manage

that, um, day to day is like

something that I just have to work

on and get through.

Although 12 years out, um, looking

back now, what do you wish you

could say to yourself

in those days back then?

You had to give yourself advice.

Yeah.

I think I would tell myself to

give myself a bit of grace.

Um, I think I probably didn't take

the time I needed, like I didn't,

um, I didn't take time off work.

I mean, I took obviously days

here and here and there, but like,

I probably needed to just step

away a bit from life and reflect

and,

and get away and regroup.

But instead I sort of like pushed

through and, you know, made the

to-do

lists and went on autopilot and

compartmentalized and did all of

those things.

And I wish I could have

just maybe been less numb and, and

felt a bit more.

Um, and I would have these

triggering moments

where you would, I would go into

the hospital or I would, you know,

see a kid playing or a healthy

child or I'd see a, there was this

one thing and I always come back

to this.

I remember watching a

commercial and people watch

commercials and I don't remember

who put it out.

I think it was,

it was a mental health

organization and it was a woman in

an elevator and she kind of gets

in and

she's like taking up a lot of

space.

And the other woman is looking at

her kind of like growly

thinking like, Oh, you know, she's

taking up all this space and like,

what, you know, can she be

more respected, respectful?

And then it shows like what's

actually happening in her life.

Like this

sort of woman that gets in and,

um, and it shows like, you know,

her, her dad was sick.

Uh, you know,

her mom had health issues.

She had just lost a child.

And the, the caption was like, you

never really

know what's going on in other

people's lives.

And I felt like in that moment, I

was that woman.

I was

pretty private about what was

going on.

And you know, my colleagues didn't

work or sorry, didn't, um,

weren't aware of sort of all of

the details, but I felt kind of

trapped in my body.

Like I had all this

information on all these feelings,

but I didn't want to like, I don't

know, burden people.

And I think

that really has, has still sits

with me today.

Um, I think over the 12 years, and

I'm sure we'll talk

about sort of how things have

evolved.

I've found different ways and

different outlets to sort of

cope in a, probably a more

productive way than in the early

days.

And I, I wish I would have had

this

same kind of insight, but I think

hindsight's 2020 and I was just so

in it at the time.

You know, hearing so many stories

and reflecting even on my own

life, uh, it's amazing how

self-directed

kindness, self-directed

compassion, uh, grace towards

oneself is one of the biggest

challenges

when we strive to just keep it all

together.

Yeah.

Claire was young.

She was very young.

At the beginning in those days,

um, as she started becoming

more aware, how did you go about

deciding what you were going to

tell her and not tell her

as she became more aware?

This was really tricky for us.

I didn't really know how to, um,

speak to her

in like an age appropriate way and

like what stages, what was

appropriate.

I would say, um,

we really leaned on the child life

specialist that we were, uh, we

worked with at SickKids and they

have kind of like, um, a resource

that shows like at this age, you

should be talking about this.

And at

this age, you can start talking

about this.

And I took a lot of honestly

accused from them.

We're also

lucky, um, in the, the cardiac

department that we, um, that

Claire is a patient.

Um, her nurse practitioner

has been with her since the very

beginning.

So since the point of diagnosis

and until today, um, we're still

with the same nurse practitioner

and she's fantastic.

Claire and her are so close.

Actually, they actually

went to a national conference, um,

a couple of months ago and, um,

presented together.

It's, it's a definitely

a powerful relationship.

Um, but I took a lot of cues from

her too, because I think she could

be a little

bit more, um, objective and, you

know, does this every day.

So I think we tried to just like

get good

advice, um, from people.

And I also took my cues from

Claire.

Like I think at the beginning, we

told

her very little other than like,

you know, we had to explain why

she was wearing oxygen.

And I had this

moment and I, this is another

moment that I'll never forget.

Um, Claire was maybe, I don't

know,

seven or eight and she went to

want to sleep over to friend's

house.

And we said, yes, um, you know,

she could bring her oxygen.

We knew the family very well.

And Claire got into this

girlfriend's room

and she said, oh, where's your

oxygen machine.

And it was at that moment that it

struck us that

Claire actually thought every

child slept with oxygen.

Like that was the norm for her.

Um, so,

I mean, that was a bit of an eye

opening moment in that, like,

okay, you know what, maybe these

age appropriate conversations

haven't stayed where they needed

to.

Um, Claire is a very, um, curious

child.

Um, she's quite extroverted and,

um, isn't afraid to, to ask

questions.

Um, so our cues a lot

came from her.

So she'd say, why do I still have

to take this medication?

Didn't they like sew up my

heart?

Like, this is still a lot of stuff

to take, or I have to go to the

hospital and get blood every

month.

Like, why is that?

What are they looking for inside

of me?

And so I think that was a good cue

for us to be able to respond.

Um, but it's been tricky.

And, and I will say those like

adolescent

years, like 10 to now, um, have

probably been the hardest, more

difficult conversations, um, more

questions that, um, are come out

of the blue and kind of throw us

off.

And it's, it's become more

challenging actually to like

evolve with her than I was

expecting.

You mentioned the word we often,

and I surmise that's you and your

husband who are making those

decisions and those early little

steps and journeys together.

But how did you accomplish that?

Especially

if you may have found yourselves

with different coping mechanisms

emerging?

Mm-hmm.

Yeah, it, um, unfortunately for

us, um, Claire's sort of course of

treatment and action

was very, um, derived from the

medical team.

And so we didn't have a ton of

flexibility in

medical decision-making.

So the two of us didn't really

have to compromise on that.

It was kind

of like, this is the option that

we're recommending.

And we both agreed that to take

medical advice

sort of as a team.

I think some of the negotiations

at home, um, I think we were

pretty aligned.

We had like, I, again, like if we

couldn't agree on something, like

I'm a little bit more, um,

out of a worrier or a bit more

risk adverse maybe than my

husband, but, um, I would say,

okay, let's just ask the NP or

let's ask the child life

specialist what they think.

Um, so we often did

rely on sort of like an outside

source to, to sort of help check

that.

But I think it was just a lot of

like open communication,

negotiating and getting Claire

involved in the conversation.

Like it,

it really was a team effort.

I can't imagine what it would have

been like doing this on my own.

Um,

and there was moments where he

needed to step away and I needed

to step away.

And having that break was

like, I don't know, a godsend.

Like, I think there was just times

that your mind does go in

to dark places and you want to

show up for your child in a way

that's not so scary for them.

And

being able to balance that between

the two of us and, or friends,

like we may call someone and say,

the two of us need a night out.

Like, can you just come over and

spend some time with, with the

kids?

Um, and we just really, we needed

to be able to ask for help outside

of, you know,

the relationship between the two

of us.

So important to ask for help and

often help is at you there and

waiting, but we never ask.

Mm-hmm.

Was there a moment where you

realized that the story you'd been

telling Claire needed to sort of

shift,

frame shift as she started getting

older?

Was there an evolution?

Yeah, I think so.

I think that the evolution was a

lot of the time tethered to like,

I don't know what I say is like

milestone moments or like bigger

events.

So a good example is like

the transition from school to

daycare.

And so we knew when she entered

school, we were going to have

to have some of these

conversations with her.

So you take medication at lunch,

but most of your friends

won't.

Um, you know, your bedtime is a

lot earlier than other kids'

bedtime because you need more

sleep.

I mean, she, cause at school you

start talking about, Oh, did you

watch the show or what time do

you go to bed?

Or, um, and so some of those, like

when she became more of like a, I

mean, she's always

been social, but able to like, you

know, in engage with friends

independently, we had to have some

those conversations more.

Um, another great example is

COVID.

Um, so Claire was in grade four,

um,

when COVID happened, it was a

scary time for us.

Um, and when people started like,

okay, well,

we'll just like increase our

bubble a little bit, or we'll

like, we'll take this calculated

risk or we

won't do this and we won't do

that.

Like we had to always be stringent

on the strict side.

And Claire

was like, it's not fair.

Like my two friends are at the

park together and like, why can't

I be there?

And I think like those triggered

conversations that revealed or

provided more depth into like

the seriousness of, of Claire's

disease.

I would say the most recent one,

and this was something that,

um, I had anxiety about maybe

since the point of diagnosis is at

what point is Claire going to

realize her life trajectory is not

the same as her friends.

And I became involved with, um,

like the pulmonary hypertension

community a couple of years ago.

I just wanted to seek out people

who

are going through the same thing

as me.

It took me a very long time to get

to that point.

I was very

reluctant to enter that space and

I kept Claire so firmly away from

it.

Um, I was, I can vividly

remember the first, um, family

conference I attended and I looked

around and everyone looked

sick.

They were on oxygen.

They were in wheelchairs.

Um, they had all the classic, more

advanced symptoms

of pulmonary hypertension that for

Claire, if you just looked at her,

you actually, her disease is

fairly visible and sorry,

invisible at this point.

And I thought, oh my God, if

Claire was with me,

she'd look around and this is her,

her future.

This is what her future is going

to hold.

And I just

couldn't face that until just the,

in the last few years, um, I

realized I joined, I became, um,

a director, um, for the board for

the pulmonary hypertension

association of Canada, which is a

national, uh, not-for-profit

organization that supports

patients and families.

Um, and, um, I got

really involved in that community

and it was through that that I

realized Claire actually needs to

make

the decision on her own about how

much she wants to know and engage

with people who have the same

disease as her.

And that has triggered a whole

other host of conversations.

So I think it's been

these sort of like pivotal moments

or milestones where conversation

and openness has shifted.

So how do you decide then how much

truth a child can carry at these

different ages and stages without

overwhelming them?

I think it's trial and error.

Like, I think you're going to say

too much.

Yep.

You're going to take the leap.

You take the leap and you're going

to say too much and they're

upset and you deal with it and

cope with it.

Um, you know, Claire regularly,

um, sees a therapist

and they can process it.

And then there's times you don't

say enough and then they learn it

on their

own anyways.

Um, I think as, you know, as

Claire gets older, I mean, she has

information at her

fingertips.

Um, it's just a different

generation.

And the concern is if she goes off

exploring on her own

versus hearing it in a sort of a

controlled environment with good

advice, taking the leap and

getting ahead of it from, at least

that is the way we have handled

it, um, has, I think been helpful.

Um, but sometimes I do worry like,

oh, maybe she doesn't need to know

this yet.

And it's tricky.

think it depends on like the

maturity of your child and what

they're asking.

Again, I've just tried to

continue to take my cues from her.

And if I see she's like, you know,

poking around online, looking at,

I don't know, like what's the life

expectancy of this, or I just try

to get ahead of it.

Yeah.

Was there a point when parenting

stopped actually feeling safe,

where you found yourself

constantly watching for something,

a sign that something might be

evolving towards going wrong

with Claire and her health?

Yeah, I think it was also tied to

these like developmental

milestones.

And like my husband

and I always agreed that we would

try to support Claire to live a

life that was as full as it could

be and provide her with all the

opportunities other kids have.

And just in a more creative

way, maybe.

So to give you an example, Claire

really wanted to go to overnight

camp.

Kids go

to overnight camp.

Her friends want, we kept hearing

about it.

I was like a bit reluctant.

I had like the

fear and like, what happens if,

you know, she gets into trouble?

And you know, a lot of the summer

camps

are, you know, in like Northern

communities or in areas that, you

know, healthcare isn't as like

readily available.

And so I was making decisions out

of fear.

And at one point, Claire, I

remember said to

me like, I know you're worried,

but I can do it.

And I know I can do it.

And so I said, okay, you know

what?

Like, let's just figure this out.

And I researched like, oh my

goodness, you don't even know,

like 20 camps.

I found one camp in Ontario that

was going to allow Claire to bring

oxygen.

This was

sort of the hiccup for us.

They had never had a child with

oxygen before, but they did have a

full-time

physician at camp.

They said, okay, we're comfortable

with going down this path.

And so we, we made it

happen.

But I think it was like in these

sorts of moments where my fear was

starting to stifle Claire

from being able to do things that

she really wanted to do.

And I was making decisions for her

that maybe in the early days I

needed to, I am the parent and she

is the child and she doesn't have

the knowledge to do that.

But as she gets older, I make

decisions and she says, she pushes

back and

says like, let's think about that.

Travel is another one.

So I was very worried about her

traveling.

So she

needs to bring oxygen online or

online, um, on the airplane.

Um, and then to the destination we

go to,

and it was sort of stifling

vacation.

Like I was worried about like, oh,

the flight.

And she said that

we can do this.

Lots of people travel with this

disease.

Like, and I think we, we, we

figured it out,

but I'm really glad that, um, she

pushes me, my husband pushes me

because I think we could live a

life

of just like feeling stuck and

being a little bit, um, unable to

like move forward and, and live.

Like, I think that is what I keep

coming back to.

Like, I think we need to take some

chances and just

like allow her to be able to try

to lead a life that she wants to

lead.

Like in two years, she will not

live in my home.

She will be out in the world.

And the thought of that is

terrifying, but we are trying

to do everything we can to set her

up for success, to be able to make

those decisions and have the

conversations and educate the

people around her in our absence.

And that has been like a real hard

thing for me to do.

What I'm hearing is that these

normal childhood milestones and

experiences and

family experiences suddenly become

like stress tests.

Oh yeah.

Did you find yourself in that

position

as a, as a mom where you were just

all eyes and ears open waiting for

something to go wrong?

Or as you

started and engaged in going

through some of these experiences,

aka stress tests, did you actually

feel

empowered?

Um, I'm not sure if I'm there yet.

I think I still am failing a lot

of stress tests.

Um, you know,

there's Clara's in high school

now, um, entering into high school

created a whole other host of

things I never thought about.

Um, you know, the conversations

around vaping and drinking and

parties and medical alert

bracelets and all the things.

Um, I think it was, it's really

about like

relinquishing control.

And I think the stress tests of

like, you know, staying up at

night until she gets

home and like walking around with

my phone.

And I don't know, I think, I don't

want to speak for

other parents, but I think

regardless of the health of your

child, every parent worries and

you'll worry

about your child forever.

Um, it just looks different.

Um, I think I do have this, like,

I think every

small little change or things

outside of my comfort zone do feel

like a stress test.

And it's,

it's a lot, it's, it's a lot to

carry.

It's, it's overwhelming.

It's emotional.

Um, it's trying

to be able to like, you know, talk

myself into like, it's going to be

okay.

And we've, but it's,

it's a lot and it is, I don't know

if it gets easier.

I'm not sure.

Tell me, tell me about how it

affects you emotionally on an

ordinary day, not one of those

stress test days,

but just an ordinary day.

Yeah.

An ordinary day.

I would say some days, I mean,

we're, we're in such

a routine on like, you know, take,

put the oxygen, take the, take the

pills, make sure the lunch is

packed, get the steps in.

Like, I think we're in like a good

groove and on a day-to-day basis,

I would

say the, the fears and the

feelings aren't front and center

for me.

Um, but there are days where there

is a, there is a trigger, whether

it's, um, you know, a medical

appointment.

Um, we see some sort

of deterioration in her health.

Um, she's, you know, I call her a

freak, we call her, we call her a

frequent flyer at SickKids.

And when we're there for like a

non-emergency routine thing, I

still have

like stepping into those four

walls of the hospital is like

anxiety provoking.

There is a lot of feelings

there.

And I think on an, an ordinary

day, I think things are, are okay.

Like I can manage it.

And,

um, like I said, just leaning on

social support, I would say

getting involved.

Like I mentioned before

in the PH community, when I have

those like ordinary days, it still

feel kind of like sad and rough.

I can

like reach out to the, I don't

know, Claire and I described them

as like her people, like the

people

that really get it, that live day

to day with the exact same thing.

And I think, um, having that

community really helps on the

ordinary days, I would say like in

the days of crisis, it's like

all hands on deck, you know,

bringing people in to help.

Um, recently my daughter had a

hospital stay

and it was a scary time.

It was like, we'd had a lot of

ordinary days, um, consistently.

And you almost

sort of, I mean, this is a great

thing.

And you, you sometimes forget, I

forget that she's sick.

And,

um, you know, I have an 11 year

old son and they interact and I

don't think about it.

And then you

have these moments where, you

know, she's in the hospital and my

husband was traveling for work.

And I thought, oh my goodness, I

have a really sick child.

And like, this is, it brings all

the

feelings back.

And those ordinary days following

the crisis days are tougher, but

you kind of just

settle back into a routine.

I think, uh, as a caregiver, you

just really need to come up with

ways to,

to cope and to like reflect and to

digest and like give yourself a

bit of grace when you have those

tough days.

It's, it's a lot.

Can you maybe share with our

listeners how you need to sort of

approach

processing the fear, the grief of

the moment so that it doesn't just

quietly take over your life?

Yeah.

I think I do it in a few ways.

I think, um, I was resistant, like

I said, I was resistant to

entering into that community and

hearing people's stories of others

who have the same disease as

Claire.

Um, and I think as I've, so part

of the way I've kind of coped is,

um, just learned more and

really understood like, what does

life look like in the longterm for

people with this disease?

And I think

that's been the, the pathways in

the stories vary a lot and we, we

don't have a crystal ball and I

don't know if she's going to be

like this person or this person or

this person or need none of these

people.

So I think that has been one way,

like really getting involved in

that community.

I would

say the community is very, um, I

really focused on the patients in

that community in the beginning.

And I think my, my shift in focus

has been to connect with the

caregivers in that community.

And so, um, with every patient in

that community, there is

caregivers surrounding them,

whether it's,

you know, medical caregivers or

family caregivers or partners, et

cetera.

And we've developed like a

community.

We're all going through the same

thing.

And I think, um, the, the power in

just

talking to people who know exactly

what you're going through has

really, really helped.

I think, um, you know, other

things that I've done is like, I'm

a firm believer in, you know,

physical activity and it is an

outlet for me.

Like I, it is, I need to exercise

every single day.

I need

to be outside every single day.

Um, I think some of those like

self care things, um, I know in

myself,

when I start becoming like angry

or like short with the kids or

frustrated, um, or I can't

concentrate at

work.

I know I need a bit of a, like, I

need to take a step back.

Like I need to, you know, have a

longer

conversation with my therapist or

I need to like take a vacation or

I need to just step away from home

life.

Um, whether that's a day or two or

like getting to the cottage for a

weekend and seeing my parents.

Like I just,

I think I've become really good at

reading my own personal cues and

taking what I need.

Um, but it's

taken me a long time to get here.

There's a, there's a huge moment

here.

And I just, I heard

you say it and it just sort of

resonated.

You said, I need to do these

things.

You didn't say I have to

do these things on the list

because that's, you know, that's

what that, those are the five

things I

need to do or that they say I need

to do or I should do.

But I heard in you, I need to,

because

those things are custom fit for

you and they work.

And I think that's a huge message

for

caregivers everywhere who are

listening, no matter what vocation

or whether you're parental,

whether you're looking after a

senior in your family, whether

you're a professional caregiver

doing shift work, but it's what I

need that's, I can choose and

that's going to work for me.

And

that's, I think that's a priceless

realization.

Uh, the other thing I'm hearing

from me, which is

really important and resonates as

community.

And I've spoken to many people now

and it's always the

same thing.

Find the community if you can, and

if it's geographically distanced,

use the tools that we

have now, uh, including, you know,

groups that gravitate towards each

other on social media to be able

provide that kind of community

support, even though they're

spread across long distances for

stories of

friends who've met in these media,

uh, in these communities who never

meet in real life,

but are very important in

providing support for each other

as caregivers dealing with their

different

journeys.

Yeah, absolutely.

I mean, like, as I mentioned

earlier on, um, Claire has a rare

disease.

So, I mean, 2000 Canadians have

what she has and that is across

the lifespan in the pediatric

population.

You can imagine it's even tinier.

Um, and so finding your people is

much harder.

Like I don't have people

in Toronto that I can regularly

see, but like you said, developing

that network, whether it's

virtually

has been really powerful.

And, you know, there is a national

conference that, um, PHA Canada

hosts

annually and it's the time that I

get to see these people in real

life.

And it is magical.

It is, um,

I, you know, I've, I've been to a

couple now and I brought Claire

for the first time this, this

fall.

Um, and seeing that experience

through her eyes was like nothing

I ever imagined.

So I'm, I'm glad in

that instance we, we took the leap

of faith.

You've taken many leaps of faith.

You've taken, you've set or gone

through milestones.

You've learned

how to live with fear, but over

time, what boundaries with other

people and other groups

or other thinkers did you have to

eventually set, even if it meant

saying things to people

that they didn't want to hear, but

all with the goal of sort of

protecting Claire?

Mm-hmm.

I haven't had to set a ton of

boundaries.

I would say, like, I think because

Claire was so

young when she was diagnosed, the

like boundaries that I set with

like, um, grandparents, like my

parents and my husband's parents,

because they, you know, would take

her for a week or two, um,

was pretty easy.

Like it was, we were all kind of

in it together from the beginning.

I would say

boundaries at school were

challenging, um, constantly be

feeling like you need to educate

the people that surround your

child on a day-to-day basis is

exhausting.

Um, and I think Claire, uh,

holds a lot of that burden now,

um, being, you know, 15, she can

certainly advocate for herself.

But I think, um, I think the

biggest boundaries has been

boundaries with Claire, um, and

trying to like,

you know, we establish these

boundaries and like, you know,

whatever these rules.

And

we always are saying like, we're,

we're doing this in the best

interest of you and for you.

And

you know, she's a teenager, like

they don't like boundaries.

They don't want to be told what to

do.

And that has been really

challenging.

She, you know, she pushes as she

should.

Um, and it's hard to know,

like, have I set a personal

boundary that's actually

unreasonable for her?

And because I have lived,

you know, a decade of boundary

setting and fear, or can I just

like relinquish a little bit and

take

my lead from her?

So I would say boundary setting

with her has actually been

probably the toughest,

but in my surroundings, it hasn't

been that bad.

Um, I would say I have like my, my

friends, um,

and my social support group are

very respectful of boundaries.

I think they know when to check in

and ask me if I need help.

And, um, I think my friends say to

me, I, I think I can be a little

bit,

uh, robotic or stoic in these

moments of crisis as, as we talked

about.

And they, they, I have heard many

times from many of them to say,

it's okay to just be upset.

Like you can just be mad.

If you want me to

come over and you want to just cry

the whole time and you not be good

company, that's okay.

And I think

just understanding the boundaries

and having friends that can

respect that sort of emotional

connection that sometimes you need

is really important.

And I think if I had friends that,

you know, couldn't respect some of

those boundaries around like

mental health and being

emotionally

intelligent, I think what we

probably wouldn't, I wouldn't have

stayed friends with them.

My friends

would have had to have changed

based on my boundaries, but I'm

fortunate that my social

circle is so supportive.

It sounds like they help keep you

visible and they prevent you from

going

numb.

Yes.

And like accountable to say like,

look, this is, you know, as, as I

mentioned, my,

my daughter was in the hospital

last week and just even hearing

them say like, this is scary.

Like,

it's okay to be scared.

And you know, I'm reorganizing my

life of like, I've got to get

my son here and this, the here and

this there.

And they're just like, none of

these things are

important.

Just like be with your daughter

and we'll figure it out.

Like things, if the garbage

doesn't go

out on Wednesday, it's not the end

of the world.

And sometimes I just need to hear

that, that reality

check of like, you need that.

I think that is as a caregiver,

you, your to-do list is constant.

It is, you're adding to it and

you're just on autopilot just to

get through all the tasks.

I think there's like an additional

load with the caregiver.

You have your everyday life of

your work and your family and your

other children and your, and then

you have this like huge other

piece that like just sort of sits

on your shoulder and that's like,

you know, filling prescriptions,

attending medical appointments,

negotiating with teachers,

negotiating with her, you know,

trying to think about the longterm

and the present.

And there is this like mental, uh,

rat race in your head and like

keeping that race quiet day to day

is work.

It takes practice.

And

for new caregivers, it is the

hardest thing I think that I

experienced.

You go, it's such a huge challenge

when you're going from a

protective

mindset to preparing your child to

actually have a voice and to be

able to speak

for herself.

With the experience you've been

through so far, what advice would

you give

parent caregivers out there

navigating this journey?

This has been a hard one for me, I

will admit.

Um, so I'm lucky.

So when Claire goes to medical

appointments, you know, it starts

with, she is playing in the corner

and is not even a part of the

conversation for, you know, age

appropriate reasons.

And then it was no, Claire's now

going to sit and

she's going to listen and, and

we're going to do that.

Then it evolved to Claire is going

to sit and

listen.

And, um, my goal with Claire is to

say, during the conversation with

the medical team,

you're going to ask a couple of

questions.

And it started with things like, I

can vividly remember

the first question she ever asked

was, what are you going to have

for dinner tonight?

To our cardiologist.

Totally unrelated to the

conversation.

She also at one point asked if he

had a dog,

what his favorite color was, but

she was still like developing a

relationship and that was all part

it.

And then it evolved to like, okay,

now we're going to transition to

like medically relevant

questions.

So she might say, sometimes in the

morning, I feel like a little bit

of extra, I feel

extra tired when my oxygen isn't

on at night.

Like, why do I feel that way?

And we started just like

evolving.

And then it was, I'm going to sit

in the back and Claire is going to

participate and

speak in the meetings.

Now it's, I come in and the NP and

the cardiologist say like, get out

of here,

mom.

Like Claire is going to, and of

course there's always some like

follow-up questions, but, um,

that like, if, if forcing,

twisting my arm to evolve has been

the best thing and the hardest

thing for me.

Recently, when we were at the

hospital last week, we went and

saw a different specialist.

Claire also

has, um, von Willebrand disease,

um, which is a disease that, um,

causes it.

It's challenging for

her blood to clot.

It's like hemophilia, but a bit

different.

Um, and so we were, we were

talking to

those, that team.

And of course I'm on autopilot.

They asked me a question.

I'm sleep deprived or they

ask us a question and I'm talking

and Claire looks at me and she

says, excuse me, I think I can

answer

these questions about myself.

And so it's in that moment that I

was like, yep.

Okay.

No, I got it.

I got

it.

And I'm like that moment.

I'm really mad at her.

Um, because I think I can answer

better, but then

I'm also like, I've, I've done my

job.

I have accomplished exactly what

we have been working on for 12

years.

Like she wants to advocate for

herself.

Does she do it perfectly every

time?

Absolutely not.

She's

15 years old, but we'll get there.

And I think as a caregiver, it's

like, you need to

really think about what your role

as a caregiver and what is the

role of the patient in having a

voice.

And I think like, you know, my

advice would be that those two

voices are extremely distinct and

not one

more important or more powerful

than the other.

There's a time and a place for

both.

And tethering

between those has been, is, is

challenging, um, as, as a

caregiver of a child.

Um, yeah, so it's...

What did, uh, what did it feel

like the first time you heard,

mom, we need you to step out?

Or mom,

can you, can you go into how we

need to speak to Claire alone?

Oh, I was mad.

I was not happy.

And I

was like, what?

She doesn't have all the

information.

Like I know the answers.

I've been on this journey.

I do this and I, and it was, I

made it about myself and it has

nothing to do with me.

It is about her and it is

about empowering her.

They have her best interests.

The like very, you know, rational

part of my brain

understands all of this, but the

emotional part, I was just like,

but I, I know I am the caregiver.

I am the, um,

so it was frustrating.

It was like a bit of a like hit to

the ego.

I'm not going to lie, but, um,

it's good.

Like I, I, we need to get there.

Um, and you know, she's going to

transition to adult care, um, at

18,

which feels like it's far away,

but it's not.

Um, we've already started doing,

um, there is a

transitions program between, um,

SickKids and Toronto General

Hospital for, um, patients like

Claire.

And

we're already starting to build up

to milestones to make that

transition because when she's 18,

I will

not be in the room.

So I am mentally getting my head

around that, uh, in, in

preparation for this.

So it's,

uh, yeah, it's, it's tough, but

you, you get there, I think as a

parent.

Sounds to me like she's already

starting to take steps towards

ownership of her own journey and

her

illness.

And which is such a huge thing.

We do see lots of transition, uh,

transitioning in chronic

inflammatory bowel disease, where

we spend a lot of time speaking

about how you're in charge of you

now, or you're learning to be in

charge of you and we count on you

to be in charge of you.

And

it's, it is, uh, I can only

imagine in Claire's case, a

process that does need to start

three years

before, because there's so many

steps involved.

So she's 15.

Yep.

Driving lessons next year.

Oh God, don't remind me.

I told my husband I want nothing

to do with those.

Well, so with so much independence

though, I mean, there's potential

independence, at least there's,

there's a risk of real medical

risk.

How do you avoid protecting your

child, Claire, so much

so that you don't actually make

things shrink in her life?

Yeah.

I mean, I think that's been like,

uh, our lifetime goal and biggest

struggle is to like,

and I think I had said this in the

beginning, like we wanted her to

live a life that was as

full as she could live within like

the, you know, medical boundaries

that she has.

And so I think

we've become very good and she's

become very good at like looking

for alternatives in her life to

still

feel fulfilled and doing things

like her friends, but maybe it

doesn't look like her friends

exactly.

So, you know, a good example is,

you know, my, my son is very, um,

athletic.

He loves sports.

He's,

you know, in, you know, plays very

competitive sports.

And my daughter's really never

been able

to play organized sport.

Um, she just doesn't have like the

cardiovascular stamina to do that.

Um, so we explored like, what does

like fun feel like in your body?

What does it look like?

What do you

like to do?

And, um, she got really interested

in art.

So, you know, she started drawing

and painting

and doing art lessons and, you

know, she's a fantastic artist.

And I think we just tried to

like really normalize that like

everyone's journey and interests

and life path are going to look

different, whether you have a

chronic disease or just different

interests or whatever, however it

may

look.

So I think that's what we've

really done to not sort of shrink

her life down and try to like

be really, you know, realistic,

um, with what she can do and not

do.

And, you know, just have some of

those frank conversations.

I think, like, I think even, um,

you know, if her, her friends are

like,

you know, going out for a couple

nights in a row and I'm seeing

that she's getting really like

worn down.

Like, I really don't want to, you

know, stifle her ability to be

social and

have a teenage life.

But like to, to your point, like

there is a part, a point in which

we need to

sort of medically intervene to

say, like, you're going to start

seeing some pretty nasty effects

you don't rest and eat properly

and get some exercise, et cetera.

And so we tried to trade

lightly and try to keep that

balance and just find alternatives

to be able to, to prevent that

sort of

like shrinkage of life.

In the face of that though, what's

it been like to have to slowly

hand over that responsibility

for explaining her condition

herself from you to now to her and

then to her peer group?

I would say that, um, it's been,

it's been okay in that we, again,

like through that transition of

explaining brought Claire in, in

like an age appropriate way.

So, you know, I would have the

conversation with the teacher and

Claire would obviously be absent.

And then we would graduate

to like, when I sat down with her

classroom teacher that year,

Claire would sit in and she

would hear what I was saying to

the teacher.

And then I was like, okay, the

next year I said,

we're going to meet with the phys

ed teacher.

You're going to tell her or him

why, what is going

on and what they need to, to watch

out for.

So Claire would say, um, when,

when we do laps

around the gym, sometimes I need

to stop and you need to not yell

at me and tell me to keep

running because I feel really

tired.

And like, and I would say to

Claire, I need to prompt her a

little bit to say like, what does

that look like?

And she would say, my lips go blue

and my heart beats

really fast and I feel dizzy.

And that's when I know I need to

sit down.

So we sort of did it like

incrementally.

Um, so she, we, we tried to sort

of model, um, that how to have

those conversations.

And then she sort of slowly

stepped in to have them herself.

And now she's in high school.

I don't call

her high school teachers and

educate them on her disease.

Um, she does that herself, but

there is

moments like, you know, she took

phys ed last year where, you know,

the teacher was like doing some

things that I wasn't thrilled

about and she was trying to

advocate for herself, but there is

moments

where I, you know, we do get

involved.

Um, but, um, yeah, I think it's

like, she's been able to really

explain, um, her, how she feels

and what she needs on her, in her

own terms.

Um, the other thing we did,

as I mentioned, um, we attended

conference, um, together in

September, which was the first

time

that she, she calls them her

people.

She met her people and, um, she

spoke on a, on a panel, um,

as the keynote.

And I was like pretty worried

about this.

I was worried, like, what's she

going to say?

What kind of questions are we

going to get?

We did it as a team.

Um, there was a couple of

caregivers

actually, and patients, and it was

really interesting.

And, um, I was like, wow, she can,

she gets this.

She can really articulate, like,

what is going on with her.

And I remember someone

asked a question and I, of course,

my inclination was to answer and

Clara, like, kind of did hit me

and

she answered it.

And so I think she's like gotten

better words to be able to

articulate what she has

to others as she hears people like

her explain what's happening.

So I think she's just like,

she's just getting the, the words

and the vocabulary as she gets

older and just has that

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