December 31, 2024 • 27 mins
The bond between sisters is a unique mix of fierce loyalty and the ability to argue over just about anything. But when someone you love is in danger, that bond becomes unwavering.
In this episode of Little Love Stories, we explore the extraordinary bond between sisters Grace and Lil O'Connell. When Lil fell critically ill with meningococcal disease on Christmas Day 2017, her life was on the line. After weeks in the ICU, she pulled through, only to face kidney failure. In a twist of fate, her perfect donor match—and her greatest support—was her sister Grace.
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CREDITS:
Host & Producer: Grace Rouvray
Guest: Grace O'Connell
Audio Producer: Lu Hill
Mamamia acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander cultures.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:21):
You're listening to a Mother Mia podcast. Mamma Mia acknowledges
the traditional owners of the land. We have recorded this
podcast on the Gatagul people of the Eor nation. We
pay our respects to their elders past and present and
extend that respect to all Aboriginal and Torus s right
islander cultures.
Speaker 2 (00:41):
Hi. It's Grace from This Glorious Mess introducing hot Pod Summer.
It's one hundred hours of curated listening across the Muma
Mea network just for you to escape the chaos and
enjoy with the kids at home and the weather warming up.
We're going to share some episodes of Little Love Stories.
Little Love Stories is an open hearted conversation with someone
(01:01):
who has love to share that love can be anything,
a time in someone's life, a person, or even an object.
It's all about discovering the magic everywhere you look. So
I hope you enjoy this episode of Little Love Stories.
Speaker 3 (01:16):
I love you, How can you live with you?
Speaker 2 (01:22):
From Mamma Mia and This Glorious Mess. Welcome to Little
Love Stories. I'm Grace Roofray. When you have a sister,
there is a bond like no other with a sister. Myself,
it's something I can only describe as aggressive loyalty. And
today's guest also called Grace, but Grace O'Connell, she knows
this bond all too well. Just a few years older
(01:46):
than her sister Lil, they went through the typical sibling
ups and downs, the fights, the disagreements and everything in between,
but they have always felt like they were soulmates, the
perfect match for each other. On Christmas Day in twenty seventeen,
Lil got sick. What seemed like a simple cold or
flu quickly escalated into something far worse.
Speaker 4 (02:08):
My mum had always done this when we were little.
She'd set alarms when we were sick to wake up
in the night and just check on us. And if
she hadn't have done that, there's a very high chance
Little wouldn't be with us.
Speaker 2 (02:20):
To Grace, her mum and Lil were rushed into the
emergency room and Lil was diagnosed with me Ninja cockle
disease and was quickly placed on a ventilator. Grace and
her mum spent weeks in the ICU, watching in disbelief
as Lil fought for her life. All of it a
surreal nightmare. How were they just days before celebrating Christmas,
and now they were caught in this horrible whirlwind of
(02:43):
uncertainty and fear.
Speaker 4 (02:44):
So we were there, and it was at night time
that it really only kicked in for Mum and I
because we wouldn't leave unless we were forced.
Speaker 2 (02:51):
Out of that room. It's always been the three of us.
We're a unit. You cannot separate us. Thankfully, Lil turned
a corner, no longer in imminent danger of life and death,
but the ordeal was far from over. Further tests revealed
that her kidneys were failing, with less than ten percent
function remaining. She was put on dialysis, and the family
(03:13):
began searching for a donor. When her parents went a match,
Grace immediately volunteered. Initially, she was told no that Grace
persisted pushing until she was finally tested, and as fate
would have it, she wasn't match.
Speaker 4 (03:28):
He said, the operation actually took longer than a normal
donation operation because we didn't realize how big and healthy
your kidney was. She's so healthy and she's so good now,
and I'm living a normal life, except for occasionally when
I'm doing stretches at the gym, I'll feel a little
bit of a Oh that's a little bit off. But
she apart from the medication and the check ins and
the testing that she still has to do, she's a
(03:51):
healthy young woman.
Speaker 2 (03:54):
Today's little love story is about family. It's about sisterly bond,
and it's about Grace's Kidney's new job. But before we
get there, we went on the street and we asked,
how do you show love to your loved ones.
Speaker 1 (04:07):
My love language is words affirmation, and I know everyone
around me is not, and so I never feel like
I'm doing a good job at it. I think I
figured out that my partner's is acts of service, but like,
I don't.
Speaker 2 (04:17):
Want to do that. I'm feminism, you know what I mean.
Speaker 1 (04:20):
I don't want do extra cooking your cleaning for you, sir.
Speaker 3 (04:22):
I think mine would be reaching out to people when
it's been a while and sort of checking in, Like
I've got a close circle of friends, and I make sure,
oh it's been a few weeks. I must check in
with them, remembering things that they're up too and asking
them about it, because I just know it's these little
things that actually make people feel like seen, Okay.
Speaker 2 (04:41):
I show love to the people I love with acts
of service. But very specific acts of service.
Speaker 1 (04:48):
So it will be something like I will pay your
bill for you because I know that you don't want
to have to deal with the mental load of going.
Speaker 2 (04:54):
Through bepay because f B pay.
Speaker 1 (04:57):
But also I'll cook you something, and I'll cook you
the thing that is your favorite meal.
Speaker 5 (05:01):
Probably the way I show love to the people I
know is just by spending quality time. I'm not a
big fan of like buying or gift giving or anything
like that, but just you know, spending a good one
on one time with a deeper, meaningful is probably the
best way.
Speaker 2 (05:16):
Grace O'Connell, thank you so much for coming on Little
Love Stories. You've written the most beautiful story about you
and your sister, Lil or Lily. How would you like
to refer to her? I say, Lil Lil? And how
many years between you and Lil are there? It's two years.
She's my younger sister, so I feel like the two
years difference up until you became adults complete trauma. But
(05:38):
then we became adults and now inseparable. So I have
a sister and it's two and a half years between us,
and there is this thing of I would call it
like aggressive loyalty.
Speaker 4 (05:48):
Yes, absolutely, passionate, aggressive loyalty. I would do anything for you,
but also, don't touch my stuff.
Speaker 2 (05:57):
With my sister, it was that, don't touch my staff.
She'd rent her clothes to me, like literally, make me
pay money if I wanted to borrow them. Are you joking?
That's crazy? This is an audio medium, and I just
want everyone to know that Grace's eyes are white. Like
just why you're like, what a good idea as the
older sister, because I'm the younger sister, you're thinking that's
a great idea. I can't believe. I didn't think that.
Speaker 4 (06:17):
I mean, it wasn't my sister, but it was definitely
my mum who did that. Exchange clothes for chores and
you know, compensation at certain stages.
Speaker 2 (06:27):
But yeah, you do start your letter by talking about
you and Lil as children, and there's a beautiful sense
of mischief that you seem to talk about. Can you
describe your relationship as you said before the adult mode
kicked in, Well, it's kind of crazy because we have
very different personalities. When we were little, so she was
(06:49):
very much this kind of soft spoken party animal, like
she would always instigate a situation. She would instigate a fight.
She'd be the one to instigate anything, and I'd be
the one who would kind of follow that up and
really push that through. But as adults, and you know,
when we started becoming individual people and finding ourselves away
(07:09):
from each other, when we moved out of home, that's
when the kind of oh, God, I really miss you
and I didn't realize how much I love you and
how important you are to me really clicked in because
we weren't seeing each other every day, and she started
pursuing her own stuff, and I was like, God, that's
so interesting. You've just blossomed it into this multifaceted person
(07:31):
that I totally took for granted, as we all do
when we're kids. And obviously because of what happened with us,
that's just made our bond so much stronger. We never
used to vocally tell each other we love each other,
and now it's just every day, and it's without blinking.
And it was in twenty seventeen that Lil first got sick.
Could you read out that part of your letter?
Speaker 4 (07:54):
And then you fell sick, and like your foot missing
the final step in the dark, everything stopped. The laughter
was replaced with fear. And the joy with grief. I
couldn't fathom a life without you, my other half. I
fell asleep every night asking the same question, over and over,
(08:16):
why you?
Speaker 2 (08:17):
Why not me? It haunted me, It still does. Could
you take me back to Christmas Day twenty seventeen.
Speaker 4 (08:26):
We were going to a family Christmas lunch and Lil
had been feeling sick for a couple of days prior
to that, but nothing out of the ordinary in terms
of cold or flu symptoms. So she had a sore throat,
had a runnie nose, etcetera, etc. And then we went
(08:47):
to this lunch and her symptoms just gradually progressed and
progressed and progressed, and she started throwing up and we
had to put her into bed at our family's house.
When we brought her home, Mum was really concerned, because
she's hyper concerned for both of us if we register
any symptom of anything. We brought her home, Mum said
(09:09):
to us, you know, we're only around the corner from
the hospital, but it's Christmas Day. It would be ridiculous
to take her to the hospital. We'll just give her
some medication and put her in bed.
Speaker 2 (09:19):
We put her in bed and.
Speaker 4 (09:22):
My mum had always done this when we were little.
She'd set alarms when we were sick to wake up
in the night and just check on us. And if
she hadn't have done that, there's a very high chance
Little wouldn't be with us today. She set an alarm
for three am, and I remember she walked into Lil's
room and her body was completely covered in purple blood clots.
(09:43):
It was a terrifying vision that I still can't get
out of my mind. I'll never be able to get
it out of my mind. Then she woke me up
quickly and we luckily were ten minutes away from Saint
Vincent's and we rushed to the hospital. Walked into the hospital,
the nurses took one look at her. They thought she
was having an allergic reaction or she was potentially on something.
(10:07):
She sat down with the nurse and the nurse looked
at her again and immediately pushed my mum and my
sister off her. They locked her into a room and
she was immediately taken into er put on intense antibiotics.
And that's when we found out that she had mininja cockle.
Speaker 2 (10:25):
And that moment of being thrust away was that because
they were concerned of it's infectious, or it was the
pace in which she needed medical treatment, like.
Speaker 4 (10:35):
It is extremely infectious. So they pushed us off her
because we'd already had too much contact with her. You
can catch minage cockle through saliva through contact with other people,
just like you'd catch cold, really, so them pushing us
off her was their immediate reaction of you need to
get away from her right now because you could very
well catch this. And it was also the immediacy, as
(10:56):
you said, of needing to get her in start her
on antibiotics, and she became unconscious. They started her on
the antibiotics, and we had a social worker mom, and
I couldn't go near her. So the next person we
had contact with was the doctor who told us she
had managed cockle, and then the next person who came
up to us was a social worker. I refused to
(11:16):
talk to the social worker.
Speaker 2 (11:17):
My mom did, and she told me that Grace, it's
very likely that LITL isn't going to make it really
nice because with me ninjacockle, you have severe blood clotting
and then you get sepsis. So yeah, that's why didn't
you want to talk to the social work. Is it
because you wanted the facts rather than feeling like you
were being led into a place of she's going to
(11:38):
die and they were setting you up to deal with that.
Speaker 4 (11:41):
Yes, absolutely, I just refused to accept that she was
going to die. It all happened so quickly. Everything, every
stage of what happened, from her having the mildest symptom
to her being in that hospital bed in the ear
and then having to pretty much clear out the ear
for her happened within forty eight hours, you know. So
(12:01):
she went from being my sister and being the love
of my life and totally fine, and the next second
I had someone coming up to me saying, you have
to figure out how to live without her, And so
I just couldn't even fathom that.
Speaker 2 (12:24):
How long were you all in that acute, this is
life or death situation. How long until her prognosis and
her being on dialysis? How long until that happened? Well,
she was in the er overnight and then she was
moved to ICU, and she was in ICU for three
(12:45):
to four weeks, and so it was kind of still
within that first week in the ICU, Mom and I
just set up camp in her room. By that stage.
Speaker 4 (12:54):
We'd been vaccinated for the strain that she got, so
we were okay to be around her, and so we
just locked ourselves in her room. We couldn't have anyone
else come in. I just remember viscerallym brushing her hair
in the bed, doing all these more comforting things that
through her comforted me as well because it felt like
(13:14):
a sense of normality. She was in ICU for three
to four weeks. Within that first week or two, they
were still telling us that if she needs to go
on a VENTI later, then it's not looking good. She
may still not make it. After the first week, I
believe they started telling us to no, she's on the up.
So these small improvements are starting to come through. The
(13:35):
blood clotting diminished, the antibiotics were kicking in, and luckily
with ninchaccle, it's very very common that you end up
losing limbs because of the blood clotting because of sepsis.
With that, because she hadn't lost any limbs in the
sepsis and the blood clotting started receding, they started looking
at other parts of her body and that's when we
found out pretty much completely lost kidney function. So she
(13:56):
ended up with three to five percent of kidney function.
We just spent the whole time when she was in
ICU for three to four weeks, just processing getting her well,
let alone processing what the next steps would be.
Speaker 2 (14:07):
When you're in that situation, sitting in a hospital bed,
looking around being like, how are we here? Yeah? This,
we're at Christmas and now yeah, I guess the whiplash
of that, and now we're talking about organ donation and yes,
I don't know if it's an out of body experience
or impost or just an alternate reality. Do you know
(14:28):
what's so crazy is that on that hospital ward in
the ICU, they had a Christmas tree and it looked
identical to the Christmas tree that my family had at
their house on Christmas Day. So we were there, and
it was at night time that it really only kicked
in for Mum and I because we wouldn't leave unless
we were forced out of that room.
Speaker 4 (14:47):
It's always been the three of us. We're a unit.
You cannot separate us. So we'd spend the nights there
and they'd turn the lights out and everyone would be
sleeping and we'd just look at that Christmas tree and
Mum and I would just look at each.
Speaker 2 (15:00):
Other and go, how did this happen? She's such a
healthy young woman.
Speaker 4 (15:05):
It just I still, to this day, I can't if
I put myself back in that situation, I still can't
understand how or why it was her, how or why
we were here. It was such a blur in that
ICU unit. I can't remember names or faces of nurses
and doctors because that's never something you imagine happening to anyone.
So we were just in absolute adrenaline fueled panic mode.
(15:28):
Really just held in this kind of limbo for that
entire time.
Speaker 2 (15:33):
And he did start looking for a donor, and they
do go to family first, but they didn't want to
go to you as an option. Why was that?
Speaker 4 (15:42):
They tested my mom and my dad first, and unfortunately
they were incompatible for different reasons. And I'd always since
the beginning kind of put my hands up, but I,
for some reason, always assumed that either mum or dad
would be compatible. Because as you're going, when we're in
the ICU, even when we're in ED and everything, it's
just this enormous amount of information and education that you
(16:02):
need to suddenly be aware of. And so even just
processing that, let alone, what the donation process looks like
was so much to take on. They didn't test me
initially because of my age, and because I'm a woman
and I can carry a child. If you have kidney,
it's much more difficult for you to carry a child.
(16:23):
It's not impossible. There's a lot of women who have
one kidney who have successfully carried through term, but it's
just a much higher risk. So they said to me,
you know, we don't want to test you because of
that reason. And I remember sitting down and this is
the most visceral memory I have, sitting down with my
nephrologist and he told me that, and I said, this
(16:47):
is my sister. What do you think I'm going to do?
I wouldn't think twice about making this decision. I was like,
how do you know if you don't at least test me,
I might be incompatible. This was when she was on dialysis,
So when she got out of the ICU, she went
to the ward and then they started her on dialysis.
And she was on dialysis for five hours a day,
three days a week, and every second day she was
(17:09):
having seizures. Every other day she was being tested. So
she had no quality of life, any sense of normality
had completely gone. So we were living together at the time,
and I had to come home to that every day
and see that this beautiful, strong woman, just all of
this outward strengths that she's trying to project to make
(17:29):
Mum and I feel better about this situation and make
everyone around us feel better about this situation and feel
more positive, was just completely wiped away. I said to
this doctor, I was like, if you don't test me,
she's going to go on the list and she's not
going to be able to live her life. So I said,
please just try it.
Speaker 2 (17:58):
You're a match. Could you please read that part of
your little love story? So I made a decision, the
easiest decision I have ever made in my life, to
give you back yours. When they tested me to be
your donor, they said what we had was rare, that
our organs were the most compatible match for each other,
(18:20):
As if we needed to be told. Once you were
told that you're a match, how quickly do you go
into surgery? How quickly does that process go? Very quickly?
I was told I was a match on the twenty
eighth of June, and then we went into surgery on
the twentieth of August. So today, six years ago is
the day we're recording. Our day of recording is the
(18:41):
twentieth of August, which is your anniversary. Yeah, which is
quite special that we're having this conversation today. I couldn't
think of doing anything better. And how did Lil bounce back?
How quickly did she bounce back. It was the most
beautiful part of this entire journey. Her energy immediately came back.
You know, there was the medical component of it, which
(19:02):
is when you lose an organ, obviously you have a
deficit and your body has to compensate. When you gain
an organ, your progression for that recovery is just so
much better. We're both in hospital for about a week.
I unfortunately had to stay longer because I contracted an
infection when I was in hospit, but they were going
(19:22):
to release me after like two days. Lil had to
stay in hospital for a week because they needed to
test her and make sure she wasn't going to reject
the kidney. Yeah, her bounce back was just incredible when
she went home. You know, I've got this beautiful video
of my mum bringing our dog to the hospital and
her sitting outside and seeing him for the first time.
I mean it was a slow kind of six to
eight weeks after that of us, you know, adjusting and everything.
(19:45):
But because we were living together and we could do
that together, it just made it so much more joyful.
It was just payoff that we deserved and we needed
after everything we've been through. I think there is a
little section in your Little Love Story where you talk
about our Titanic reference going in and going out. Can
you tell me what that is? Can you explain? It
(20:06):
was so silly. We used to love Titanic as kids,
and we'd always kind of take the piss out of
it a bit, which it was just that weird situation.
Speaker 4 (20:13):
We have a photo of us when we were five
years old and we're holding hands in like don't leave me, Jack,
don't let go Jack kind of situation. And so to
mark the transplant anniversary, my sister last year posted on
social media that photo side by side with a photo
of us just about to be rolled into the theater
with our hands reached out. When we were doing that,
(20:34):
just before we went in, we were just trying to
make light of the situation because its very depressing.
Speaker 2 (20:40):
It's very depressive, it's very heavy, but also when you've
had so much depressing, the sense of humor is a
bit dark. Yeah, it goes a bit.
Speaker 4 (20:49):
Dark, it really does. And we've always had a bit
of a dark sense of humor of the two of us,
and we relish in it. And we've got very funny parents,
so the trickle down effect is incredible.
Speaker 2 (20:59):
So when my mom and.
Speaker 4 (21:00):
Dad were watching us, we're just full of pride and fear.
You know, when we were about to go in, it
was Lil and I who was kind of keeping it
buoyant because we're just looking at the next steps. You know,
this was the beginning of Lill getting her life back.
This is the beginning of our family getting our life back.
This is the beginning of us being able to finally
deal with our trauma. So the don't let go Jack
(21:22):
situation was as much for them as it was for us.
And then we got out of the theater, and you know,
we were very groggy, and when we woke up again,
we couldn't actually be near each other because we had
different medical teams and they didn't want the medical teams
to get mixed up and give us the wrong information.
We were separated on the ward, but we'd call each
other and FaceTime each other. And it's the same thing
(21:43):
as the you know, I didn't let go and.
Speaker 2 (21:48):
Yeah, I love that. And what do you live with
now having only one kidney? Like you said, the recovery,
there is a deficit for you, whereas Lil gained something.
What was that your body getting used to that.
Speaker 4 (22:01):
This is why we can live donate kidneys, because if
you have one kidney, your kidney actually grows to compensate
for the loss of the other kidney. So I have
to check in every year with my neuprologist. And the
first year I went in, I was terrified because you
can actually function with seventy five to eighty five percent
kidney function or less. And he told me I had
(22:21):
ninety five percent kidney function, and my sister as well.
He said to me, it's the funniest thing, he said,
the operation actually took longer than a normal donation operation
because we didn't realize how.
Speaker 2 (22:32):
Big and healthy your kidney was. So giving it to her,
you know, she's so healthy and she's so good now,
and she's on immune suppressants and everything. I am not
on anything. I'm not technically immune suppressed, so I'm living
a normal life, except for occasionally when I'm doing stretchers
at the gym, I'll feel a little bit of a
(22:52):
oh that's a little bit off, but you know, a
lopsided I was slowly upsided. But she, apart from the
medication and the check ins and the testing that she
still has to do, she's a healthy young woman. She
makes me jealous every day with how much she goes
to the gym, and I don't right now. You know,
she's thriving, So that's all we possibly could have wanted.
(23:16):
This is a potentially a wanky question, but I want
to ask it. Has going through an experience like this.
I don't know whether it's the kidney donation or seeing
the love of your life in a position where they
might die, has it changed your day to day how
you look at the world. And maybe it's not every
single day, because we're still living life and getting up
and going work and doing annoying things. But are there's
(23:37):
small things in your everyday life that you can tell
are different because of this experience. How you're viewing them
is different. Oh definitely. I think. I mean not to
blow this situation up, but it's kind of changed everything.
Before you're in a situation like that, you don't realize
how volatile life is and how quickly you can lose someone.
(23:59):
And I came out of that situation. I mean, we're
still coping with the trauma from it. It will never
be something we can get over. I know Lil is
here and she's healthy today, and I'm so grateful for that.
That trauma was just horrific and it still is. So
I think what it changed about me is this sense
of just not wasting time, not wasting any day. This
(24:25):
is going to sound winking out, but not forgetting to
tell the people you love that you love them, spending
time with them. And it's just kind of shaped my
self importance as well, because you know, everyone talks to me,
I tell them the kidney story and they're like, you're
so amazing, that's so amazing, and I'm like, it is amazing,
but I don't see it in that way. What would
(24:45):
you have done? So I walk into life now and
I don't judge myself as much, you know, I try
to feel as confident as I possibly can because I
look at my sister and everything she's been through, and
she's such an inspiration in that sense. She's confident, she's strong,
she's so beautiful, and she loves so much more now
(25:08):
after what we've been through, and so do we. And
I think that's what we've gained from it. Our love
now for everything we do and everyone in our lives
is just so much bigger and stronger and louder. And
I think that's what I got out of it. So
we our sixties on today, on the day, could you
please read the final part of your letter.
Speaker 4 (25:30):
Today, we sit at the beach on a scorching hot
day and trace our scars with pride, our trauma and
our hardship, not defining who we are, but fueling our
desire to be whoever we want to be. So I
ask you, my little to take care of my precious gift.
Look after her as I have tasked her to look
(25:52):
after you, love her as I love you, and be
as proud of her and everything she represents as I
am of you.
Speaker 2 (26:03):
What I love about this is that you're right like
you've packed your kidney off to give it. It's a
new job, which I have, really, you know, I think
we made these jokes all the time. It's very funny
about It could be food, it could be music, things
that I like that she's started to like, I mean,
that's always happened with us, but we blame it on
(26:23):
the kidney. Now she's like, God, your kidney's being annoying today.
She's like, I really didn't want to have a milkshake today,
but your kidney is telling me to have a milkshake,
and you're welcome. That's it's scientific. I'm sure it is
absolutely scientific. We always end our little love stories by
asking what does love mean to you? So crazy? What
(26:45):
does love mean to you today? Love means, I think,
giving yourself completely to the people in your life. Love
means being completely unhindered. Love means not being afraid to
tell the people you love that you love them. Love
means having the courage to fight, I think for the
(27:07):
people you love and for yourself, And love is people.
Love is strength and courage to fight for not just
what you deserve, but what the people you love deserves. Well,
that's a perfect please to end. Thank you so much,
Thank you so much. You can read Grace's full little
love story essay, which will be dropped into our episode.
(27:28):
Show notes. If you have a story that you'd like
to share with us, we would absolutely love to hear it.
We're always on the lookout for great stories a new perspective.
So if you've got some love, some gratitude for either
a person, a place, an object, a thing, a time
in your life, please get in touch. All the details
in our show notes. Little Love Stories is produced by
me Grace Ruverey, with audio production by Lou Hill. If
(27:52):
you're looking for something else to listen to, Mumma Me
Who's presenting one hundred hours of summer listens from meaningful conversations,
incredible stories, fashion, beauty and a bit of silliness. There's
a link to more things to listen to in the
show notes
You're listening to a Mother Mia podcast. Mamma Mia acknowledges
the traditional owners of the land. We have recorded this
podcast on the Gatagul people of the Eor nation. We
pay our respects to their elders past and present and
extend that respect to all Aboriginal and Torus s right
islander cultures.
Speaker 2 (00:41):
Hi. It's Grace from This Glorious Mess introducing hot Pod Summer.
It's one hundred hours of curated listening across the Muma
Mea network just for you to escape the chaos and
enjoy with the kids at home and the weather warming up.
We're going to share some episodes of Little Love Stories.
Little Love Stories is an open hearted conversation with someone
(01:01):
who has love to share that love can be anything,
a time in someone's life, a person, or even an object.
It's all about discovering the magic everywhere you look. So
I hope you enjoy this episode of Little Love Stories.
Speaker 3 (01:16):
I love you, How can you live with you?
Speaker 2 (01:22):
From Mamma Mia and This Glorious Mess. Welcome to Little
Love Stories. I'm Grace Roofray. When you have a sister,
there is a bond like no other with a sister. Myself,
it's something I can only describe as aggressive loyalty. And
today's guest also called Grace, but Grace O'Connell, she knows
this bond all too well. Just a few years older
(01:46):
than her sister Lil, they went through the typical sibling
ups and downs, the fights, the disagreements and everything in between,
but they have always felt like they were soulmates, the
perfect match for each other. On Christmas Day in twenty seventeen,
Lil got sick. What seemed like a simple cold or
flu quickly escalated into something far worse.
Speaker 4 (02:08):
My mum had always done this when we were little.
She'd set alarms when we were sick to wake up
in the night and just check on us. And if
she hadn't have done that, there's a very high chance
Little wouldn't be with us.
Speaker 2 (02:20):
To Grace, her mum and Lil were rushed into the
emergency room and Lil was diagnosed with me Ninja cockle
disease and was quickly placed on a ventilator. Grace and
her mum spent weeks in the ICU, watching in disbelief
as Lil fought for her life. All of it a
surreal nightmare. How were they just days before celebrating Christmas,
and now they were caught in this horrible whirlwind of
(02:43):
uncertainty and fear.
Speaker 4 (02:44):
So we were there, and it was at night time
that it really only kicked in for Mum and I
because we wouldn't leave unless we were forced.
Speaker 2 (02:51):
Out of that room. It's always been the three of us.
We're a unit. You cannot separate us. Thankfully, Lil turned
a corner, no longer in imminent danger of life and death,
but the ordeal was far from over. Further tests revealed
that her kidneys were failing, with less than ten percent
function remaining. She was put on dialysis, and the family
(03:13):
began searching for a donor. When her parents went a match,
Grace immediately volunteered. Initially, she was told no that Grace
persisted pushing until she was finally tested, and as fate
would have it, she wasn't match.
Speaker 4 (03:28):
He said, the operation actually took longer than a normal
donation operation because we didn't realize how big and healthy
your kidney was. She's so healthy and she's so good now,
and I'm living a normal life, except for occasionally when
I'm doing stretches at the gym, I'll feel a little
bit of a Oh that's a little bit off. But
she apart from the medication and the check ins and
the testing that she still has to do, she's a
(03:51):
healthy young woman.
Speaker 2 (03:54):
Today's little love story is about family. It's about sisterly bond,
and it's about Grace's Kidney's new job. But before we
get there, we went on the street and we asked,
how do you show love to your loved ones.
Speaker 1 (04:07):
My love language is words affirmation, and I know everyone
around me is not, and so I never feel like
I'm doing a good job at it. I think I
figured out that my partner's is acts of service, but like,
I don't.
Speaker 2 (04:17):
Want to do that. I'm feminism, you know what I mean.
Speaker 1 (04:20):
I don't want do extra cooking your cleaning for you, sir.
Speaker 3 (04:22):
I think mine would be reaching out to people when
it's been a while and sort of checking in, Like
I've got a close circle of friends, and I make sure,
oh it's been a few weeks. I must check in
with them, remembering things that they're up too and asking
them about it, because I just know it's these little
things that actually make people feel like seen, Okay.
Speaker 2 (04:41):
I show love to the people I love with acts
of service. But very specific acts of service.
Speaker 1 (04:48):
So it will be something like I will pay your
bill for you because I know that you don't want
to have to deal with the mental load of going.
Speaker 2 (04:54):
Through bepay because f B pay.
Speaker 1 (04:57):
But also I'll cook you something, and I'll cook you
the thing that is your favorite meal.
Speaker 5 (05:01):
Probably the way I show love to the people I
know is just by spending quality time. I'm not a
big fan of like buying or gift giving or anything
like that, but just you know, spending a good one
on one time with a deeper, meaningful is probably the
best way.
Speaker 2 (05:16):
Grace O'Connell, thank you so much for coming on Little
Love Stories. You've written the most beautiful story about you
and your sister, Lil or Lily. How would you like
to refer to her? I say, Lil Lil? And how
many years between you and Lil are there? It's two years.
She's my younger sister, so I feel like the two
years difference up until you became adults complete trauma. But
(05:38):
then we became adults and now inseparable. So I have
a sister and it's two and a half years between us,
and there is this thing of I would call it
like aggressive loyalty.
Speaker 4 (05:48):
Yes, absolutely, passionate, aggressive loyalty. I would do anything for you,
but also, don't touch my stuff.
Speaker 2 (05:57):
With my sister, it was that, don't touch my staff.
She'd rent her clothes to me, like literally, make me
pay money if I wanted to borrow them. Are you joking?
That's crazy? This is an audio medium, and I just
want everyone to know that Grace's eyes are white. Like
just why you're like, what a good idea as the
older sister, because I'm the younger sister, you're thinking that's
a great idea. I can't believe. I didn't think that.
Speaker 4 (06:17):
I mean, it wasn't my sister, but it was definitely
my mum who did that. Exchange clothes for chores and
you know, compensation at certain stages.
Speaker 2 (06:27):
But yeah, you do start your letter by talking about
you and Lil as children, and there's a beautiful sense
of mischief that you seem to talk about. Can you
describe your relationship as you said before the adult mode
kicked in, Well, it's kind of crazy because we have
very different personalities. When we were little, so she was
(06:49):
very much this kind of soft spoken party animal, like
she would always instigate a situation. She would instigate a fight.
She'd be the one to instigate anything, and I'd be
the one who would kind of follow that up and
really push that through. But as adults, and you know,
when we started becoming individual people and finding ourselves away
(07:09):
from each other, when we moved out of home, that's
when the kind of oh, God, I really miss you
and I didn't realize how much I love you and
how important you are to me really clicked in because
we weren't seeing each other every day, and she started
pursuing her own stuff, and I was like, God, that's
so interesting. You've just blossomed it into this multifaceted person
(07:31):
that I totally took for granted, as we all do
when we're kids. And obviously because of what happened with us,
that's just made our bond so much stronger. We never
used to vocally tell each other we love each other,
and now it's just every day, and it's without blinking.
And it was in twenty seventeen that Lil first got sick.
Could you read out that part of your letter?
Speaker 4 (07:54):
And then you fell sick, and like your foot missing
the final step in the dark, everything stopped. The laughter
was replaced with fear. And the joy with grief. I
couldn't fathom a life without you, my other half. I
fell asleep every night asking the same question, over and over,
(08:16):
why you?
Speaker 2 (08:17):
Why not me? It haunted me, It still does. Could
you take me back to Christmas Day twenty seventeen.
Speaker 4 (08:26):
We were going to a family Christmas lunch and Lil
had been feeling sick for a couple of days prior
to that, but nothing out of the ordinary in terms
of cold or flu symptoms. So she had a sore throat,
had a runnie nose, etcetera, etc. And then we went
(08:47):
to this lunch and her symptoms just gradually progressed and
progressed and progressed, and she started throwing up and we
had to put her into bed at our family's house.
When we brought her home, Mum was really concerned, because
she's hyper concerned for both of us if we register
any symptom of anything. We brought her home, Mum said
(09:09):
to us, you know, we're only around the corner from
the hospital, but it's Christmas Day. It would be ridiculous
to take her to the hospital. We'll just give her
some medication and put her in bed.
Speaker 2 (09:19):
We put her in bed and.
Speaker 4 (09:22):
My mum had always done this when we were little.
She'd set alarms when we were sick to wake up
in the night and just check on us. And if
she hadn't have done that, there's a very high chance
Little wouldn't be with us today. She set an alarm
for three am, and I remember she walked into Lil's
room and her body was completely covered in purple blood clots.
(09:43):
It was a terrifying vision that I still can't get
out of my mind. I'll never be able to get
it out of my mind. Then she woke me up
quickly and we luckily were ten minutes away from Saint
Vincent's and we rushed to the hospital. Walked into the hospital,
the nurses took one look at her. They thought she
was having an allergic reaction or she was potentially on something.
(10:07):
She sat down with the nurse and the nurse looked
at her again and immediately pushed my mum and my
sister off her. They locked her into a room and
she was immediately taken into er put on intense antibiotics.
And that's when we found out that she had mininja cockle.
Speaker 2 (10:25):
And that moment of being thrust away was that because
they were concerned of it's infectious, or it was the
pace in which she needed medical treatment, like.
Speaker 4 (10:35):
It is extremely infectious. So they pushed us off her
because we'd already had too much contact with her. You
can catch minage cockle through saliva through contact with other people,
just like you'd catch cold, really, so them pushing us
off her was their immediate reaction of you need to
get away from her right now because you could very
well catch this. And it was also the immediacy, as
(10:56):
you said, of needing to get her in start her
on antibiotics, and she became unconscious. They started her on
the antibiotics, and we had a social worker mom, and
I couldn't go near her. So the next person we
had contact with was the doctor who told us she
had managed cockle, and then the next person who came
up to us was a social worker. I refused to
(11:16):
talk to the social worker.
Speaker 2 (11:17):
My mom did, and she told me that Grace, it's
very likely that LITL isn't going to make it really
nice because with me ninjacockle, you have severe blood clotting
and then you get sepsis. So yeah, that's why didn't
you want to talk to the social work. Is it
because you wanted the facts rather than feeling like you
were being led into a place of she's going to
(11:38):
die and they were setting you up to deal with that.
Speaker 4 (11:41):
Yes, absolutely, I just refused to accept that she was
going to die. It all happened so quickly. Everything, every
stage of what happened, from her having the mildest symptom
to her being in that hospital bed in the ear
and then having to pretty much clear out the ear
for her happened within forty eight hours, you know. So
(12:01):
she went from being my sister and being the love
of my life and totally fine, and the next second
I had someone coming up to me saying, you have
to figure out how to live without her, And so
I just couldn't even fathom that.
Speaker 2 (12:24):
How long were you all in that acute, this is
life or death situation. How long until her prognosis and
her being on dialysis? How long until that happened? Well,
she was in the er overnight and then she was
moved to ICU, and she was in ICU for three
(12:45):
to four weeks, and so it was kind of still
within that first week in the ICU, Mom and I
just set up camp in her room. By that stage.
Speaker 4 (12:54):
We'd been vaccinated for the strain that she got, so
we were okay to be around her, and so we
just locked ourselves in her room. We couldn't have anyone
else come in. I just remember viscerallym brushing her hair
in the bed, doing all these more comforting things that
through her comforted me as well because it felt like
(13:14):
a sense of normality. She was in ICU for three
to four weeks. Within that first week or two, they
were still telling us that if she needs to go
on a VENTI later, then it's not looking good. She
may still not make it. After the first week, I
believe they started telling us to no, she's on the up.
So these small improvements are starting to come through. The
(13:35):
blood clotting diminished, the antibiotics were kicking in, and luckily
with ninchaccle, it's very very common that you end up
losing limbs because of the blood clotting because of sepsis.
With that, because she hadn't lost any limbs in the
sepsis and the blood clotting started receding, they started looking
at other parts of her body and that's when we
found out pretty much completely lost kidney function. So she
(13:56):
ended up with three to five percent of kidney function.
We just spent the whole time when she was in
ICU for three to four weeks, just processing getting her well,
let alone processing what the next steps would be.
Speaker 2 (14:07):
When you're in that situation, sitting in a hospital bed,
looking around being like, how are we here? Yeah? This,
we're at Christmas and now yeah, I guess the whiplash
of that, and now we're talking about organ donation and yes,
I don't know if it's an out of body experience
or impost or just an alternate reality. Do you know
(14:28):
what's so crazy is that on that hospital ward in
the ICU, they had a Christmas tree and it looked
identical to the Christmas tree that my family had at
their house on Christmas Day. So we were there, and
it was at night time that it really only kicked
in for Mum and I because we wouldn't leave unless
we were forced out of that room.
Speaker 4 (14:47):
It's always been the three of us. We're a unit.
You cannot separate us. So we'd spend the nights there
and they'd turn the lights out and everyone would be
sleeping and we'd just look at that Christmas tree and
Mum and I would just look at each.
Speaker 2 (15:00):
Other and go, how did this happen? She's such a
healthy young woman.
Speaker 4 (15:05):
It just I still, to this day, I can't if
I put myself back in that situation, I still can't
understand how or why it was her, how or why
we were here. It was such a blur in that
ICU unit. I can't remember names or faces of nurses
and doctors because that's never something you imagine happening to anyone.
So we were just in absolute adrenaline fueled panic mode.
(15:28):
Really just held in this kind of limbo for that
entire time.
Speaker 2 (15:33):
And he did start looking for a donor, and they
do go to family first, but they didn't want to
go to you as an option. Why was that?
Speaker 4 (15:42):
They tested my mom and my dad first, and unfortunately
they were incompatible for different reasons. And I'd always since
the beginning kind of put my hands up, but I,
for some reason, always assumed that either mum or dad
would be compatible. Because as you're going, when we're in
the ICU, even when we're in ED and everything, it's
just this enormous amount of information and education that you
(16:02):
need to suddenly be aware of. And so even just
processing that, let alone, what the donation process looks like
was so much to take on. They didn't test me
initially because of my age, and because I'm a woman
and I can carry a child. If you have kidney,
it's much more difficult for you to carry a child.
(16:23):
It's not impossible. There's a lot of women who have
one kidney who have successfully carried through term, but it's
just a much higher risk. So they said to me,
you know, we don't want to test you because of
that reason. And I remember sitting down and this is
the most visceral memory I have, sitting down with my
nephrologist and he told me that, and I said, this
(16:47):
is my sister. What do you think I'm going to do?
I wouldn't think twice about making this decision. I was like,
how do you know if you don't at least test me,
I might be incompatible. This was when she was on dialysis,
So when she got out of the ICU, she went
to the ward and then they started her on dialysis.
And she was on dialysis for five hours a day,
three days a week, and every second day she was
(17:09):
having seizures. Every other day she was being tested. So
she had no quality of life, any sense of normality
had completely gone. So we were living together at the time,
and I had to come home to that every day
and see that this beautiful, strong woman, just all of
this outward strengths that she's trying to project to make
(17:29):
Mum and I feel better about this situation and make
everyone around us feel better about this situation and feel
more positive, was just completely wiped away. I said to
this doctor, I was like, if you don't test me,
she's going to go on the list and she's not
going to be able to live her life. So I said,
please just try it.
Speaker 2 (17:58):
You're a match. Could you please read that part of
your little love story? So I made a decision, the
easiest decision I have ever made in my life, to
give you back yours. When they tested me to be
your donor, they said what we had was rare, that
our organs were the most compatible match for each other,
(18:20):
As if we needed to be told. Once you were
told that you're a match, how quickly do you go
into surgery? How quickly does that process go? Very quickly?
I was told I was a match on the twenty
eighth of June, and then we went into surgery on
the twentieth of August. So today, six years ago is
the day we're recording. Our day of recording is the
(18:41):
twentieth of August, which is your anniversary. Yeah, which is
quite special that we're having this conversation today. I couldn't
think of doing anything better. And how did Lil bounce back?
How quickly did she bounce back. It was the most
beautiful part of this entire journey. Her energy immediately came back.
You know, there was the medical component of it, which
(19:02):
is when you lose an organ, obviously you have a
deficit and your body has to compensate. When you gain
an organ, your progression for that recovery is just so
much better. We're both in hospital for about a week.
I unfortunately had to stay longer because I contracted an
infection when I was in hospit, but they were going
(19:22):
to release me after like two days. Lil had to
stay in hospital for a week because they needed to
test her and make sure she wasn't going to reject
the kidney. Yeah, her bounce back was just incredible when
she went home. You know, I've got this beautiful video
of my mum bringing our dog to the hospital and
her sitting outside and seeing him for the first time.
I mean it was a slow kind of six to
eight weeks after that of us, you know, adjusting and everything.
(19:45):
But because we were living together and we could do
that together, it just made it so much more joyful.
It was just payoff that we deserved and we needed
after everything we've been through. I think there is a
little section in your Little Love Story where you talk
about our Titanic reference going in and going out. Can
you tell me what that is? Can you explain? It
(20:06):
was so silly. We used to love Titanic as kids,
and we'd always kind of take the piss out of
it a bit, which it was just that weird situation.
Speaker 4 (20:13):
We have a photo of us when we were five
years old and we're holding hands in like don't leave me, Jack,
don't let go Jack kind of situation. And so to
mark the transplant anniversary, my sister last year posted on
social media that photo side by side with a photo
of us just about to be rolled into the theater
with our hands reached out. When we were doing that,
(20:34):
just before we went in, we were just trying to
make light of the situation because its very depressing.
Speaker 2 (20:40):
It's very depressive, it's very heavy, but also when you've
had so much depressing, the sense of humor is a
bit dark. Yeah, it goes a bit.
Speaker 4 (20:49):
Dark, it really does. And we've always had a bit
of a dark sense of humor of the two of us,
and we relish in it. And we've got very funny parents,
so the trickle down effect is incredible.
Speaker 2 (20:59):
So when my mom and.
Speaker 4 (21:00):
Dad were watching us, we're just full of pride and fear.
You know, when we were about to go in, it
was Lil and I who was kind of keeping it
buoyant because we're just looking at the next steps. You know,
this was the beginning of Lill getting her life back.
This is the beginning of our family getting our life back.
This is the beginning of us being able to finally
deal with our trauma. So the don't let go Jack
(21:22):
situation was as much for them as it was for us.
And then we got out of the theater, and you know,
we were very groggy, and when we woke up again,
we couldn't actually be near each other because we had
different medical teams and they didn't want the medical teams
to get mixed up and give us the wrong information.
We were separated on the ward, but we'd call each
other and FaceTime each other. And it's the same thing
(21:43):
as the you know, I didn't let go and.
Speaker 2 (21:48):
Yeah, I love that. And what do you live with
now having only one kidney? Like you said, the recovery,
there is a deficit for you, whereas Lil gained something.
What was that your body getting used to that.
Speaker 4 (22:01):
This is why we can live donate kidneys, because if
you have one kidney, your kidney actually grows to compensate
for the loss of the other kidney. So I have
to check in every year with my neuprologist. And the
first year I went in, I was terrified because you
can actually function with seventy five to eighty five percent
kidney function or less. And he told me I had
(22:21):
ninety five percent kidney function, and my sister as well.
He said to me, it's the funniest thing, he said,
the operation actually took longer than a normal donation operation
because we didn't realize how.
Speaker 2 (22:32):
Big and healthy your kidney was. So giving it to her,
you know, she's so healthy and she's so good now,
and she's on immune suppressants and everything. I am not
on anything. I'm not technically immune suppressed, so I'm living
a normal life, except for occasionally when I'm doing stretchers
at the gym, I'll feel a little bit of a
(22:52):
oh that's a little bit off, but you know, a
lopsided I was slowly upsided. But she, apart from the
medication and the check ins and the testing that she
still has to do, she's a healthy young woman. She
makes me jealous every day with how much she goes
to the gym, and I don't right now. You know,
she's thriving, So that's all we possibly could have wanted.
(23:16):
This is a potentially a wanky question, but I want
to ask it. Has going through an experience like this.
I don't know whether it's the kidney donation or seeing
the love of your life in a position where they
might die, has it changed your day to day how
you look at the world. And maybe it's not every
single day, because we're still living life and getting up
and going work and doing annoying things. But are there's
(23:37):
small things in your everyday life that you can tell
are different because of this experience. How you're viewing them
is different. Oh definitely. I think. I mean not to
blow this situation up, but it's kind of changed everything.
Before you're in a situation like that, you don't realize
how volatile life is and how quickly you can lose someone.
(23:59):
And I came out of that situation. I mean, we're
still coping with the trauma from it. It will never
be something we can get over. I know Lil is
here and she's healthy today, and I'm so grateful for that.
That trauma was just horrific and it still is. So
I think what it changed about me is this sense
of just not wasting time, not wasting any day. This
(24:25):
is going to sound winking out, but not forgetting to
tell the people you love that you love them, spending
time with them. And it's just kind of shaped my
self importance as well, because you know, everyone talks to me,
I tell them the kidney story and they're like, you're
so amazing, that's so amazing, and I'm like, it is amazing,
but I don't see it in that way. What would
(24:45):
you have done? So I walk into life now and
I don't judge myself as much, you know, I try
to feel as confident as I possibly can because I
look at my sister and everything she's been through, and
she's such an inspiration in that sense. She's confident, she's strong,
she's so beautiful, and she loves so much more now
(25:08):
after what we've been through, and so do we. And
I think that's what we've gained from it. Our love
now for everything we do and everyone in our lives
is just so much bigger and stronger and louder. And
I think that's what I got out of it. So
we our sixties on today, on the day, could you
please read the final part of your letter.
Speaker 4 (25:30):
Today, we sit at the beach on a scorching hot
day and trace our scars with pride, our trauma and
our hardship, not defining who we are, but fueling our
desire to be whoever we want to be. So I
ask you, my little to take care of my precious gift.
Look after her as I have tasked her to look
(25:52):
after you, love her as I love you, and be
as proud of her and everything she represents as I
am of you.
Speaker 2 (26:03):
What I love about this is that you're right like
you've packed your kidney off to give it. It's a
new job, which I have, really, you know, I think
we made these jokes all the time. It's very funny
about It could be food, it could be music, things
that I like that she's started to like, I mean,
that's always happened with us, but we blame it on
(26:23):
the kidney. Now she's like, God, your kidney's being annoying today.
She's like, I really didn't want to have a milkshake today,
but your kidney is telling me to have a milkshake,
and you're welcome. That's it's scientific. I'm sure it is
absolutely scientific. We always end our little love stories by
asking what does love mean to you? So crazy? What
(26:45):
does love mean to you today? Love means, I think,
giving yourself completely to the people in your life. Love
means being completely unhindered. Love means not being afraid to
tell the people you love that you love them. Love
means having the courage to fight, I think for the
(27:07):
people you love and for yourself, And love is people.
Love is strength and courage to fight for not just
what you deserve, but what the people you love deserves. Well,
that's a perfect please to end. Thank you so much,
Thank you so much. You can read Grace's full little
love story essay, which will be dropped into our episode.
(27:28):
Show notes. If you have a story that you'd like
to share with us, we would absolutely love to hear it.
We're always on the lookout for great stories a new perspective.
So if you've got some love, some gratitude for either
a person, a place, an object, a thing, a time
in your life, please get in touch. All the details
in our show notes. Little Love Stories is produced by
me Grace Ruverey, with audio production by Lou Hill. If
(27:52):
you're looking for something else to listen to, Mumma Me
Who's presenting one hundred hours of summer listens from meaningful conversations,
incredible stories, fashion, beauty and a bit of silliness. There's
a link to more things to listen to in the
show notes
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