September 11, 2024 • 21 mins
In this episode, Wes and Kady Shell talk about how they kept their marriage strong and remained close while their daughter Hattie went through an extended ICU stay. Wes and Cady discuss how they learned to let go, meet their spouse where they were, and check in often. One is an early riser and one of them is a night owl. This fact that used to irritate them became key in taking shifts in the ICU. Their differences became their strengths.
A special thank you to our moderator, Clay Culp, social worker at St. Jude, and our parent caregivers, Wesley and Kady Shell.
Learn more about Hattie’s diagnosis of anaplastic large cell lymphoma on Together by St. Jude™.
This episode was recorded on 04/04/2024.
A special thank you to our moderator, Clay Culp, social worker at St. Jude, and our parent caregivers, Wesley and Kady Shell.
Learn more about Hattie’s diagnosis of anaplastic large cell lymphoma on Together by St. Jude™.
This episode was recorded on 04/04/2024.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
A child's diagnosis of cancer or another serious disease is difficult.
(00:05):
Families, guardians, and loved ones experience a range of emotions and often need support
related to their child's diagnosis and treatment.
St. Jude Children's Research Hospital brings you Caregivers SHARE,
a St. Jude podcast.
SHARE stands for support, honor, advise, reflect, encourage.
In this series, you'll hear stories and insights directly from the experiences of St.
(00:29):
Jude families and care providers.
Clay (00:31):
Your relationship with your partner can be more stressful than usual when you have a child
who is sick.
I'm Clay Culp, a social worker at St. Jude Children's Research Hospital.
In this episode of Caregivers SHARE, a St. Jude podcast, I'm talking with caregivers
Wesley and Kady Shell about how they kept their relationship strong while their daughter
(00:55):
was going through serious illness.
Wesley and Kady, can you introduce yourselves and tell us a little bit about your journey?
Kady (01:02):
I'm Kady Shell, our daughter is Hattie Lucille.
In the fall of 2021, she was diagnosed with anaplastic large cell lymphoma leukemia with
central nervous system involvement, which also triggered an even more rare disease called
hemophagocytic lymphohistiocystosis.
(01:24):
With that diagnosis, she was on a ventilator for an extended period of time, and we lived
in the ICU for a little over 11 weeks, and then were in treatment for another eight months
after that.
So, we have quite a bit of experience living in the hospital as well as living the outpatient
(01:48):
life.
And thankfully, today, Hattie Lu is officially 616 days into complete remission, so we are
very grateful to be where we are today.
Wesley (02:03):
I'm Wesley Shell, Hattie's daddy and Kady's husband, and Kady and I were able to go through
this journey side by side the entire time.
Clay (02:17):
Relationships can be challenging when no stressors are present.
When a child is diagnosed with a serious illness, it can add to and worsen strains that might
have already been present.
What were some of the biggest stressors placed on your relationship while parenting a child
with serious illness?
Kady (02:33):
Being concerned for our older daughter, Hazel.
Hazel was home, and there were a lot of hospital protocols, and just the criticality of her
sister's illness where we couldn't be with her, and she could not come up to the hospital.
So missing her was really, really difficult.
(02:55):
And then on top of that, just trying to make sure that everything at home was taken care
of. Were there, you know, the things that you think of when you're just at home, how many
things do you need to do in a day that aren't, you know, your paying job?
We needed to make sure that those things could continue to be taken care of.
(03:15):
And that just, I mean, it was all hard, honestly.
Clay (03:18):
Yes, there's so many competing demands, and at the same time, you're anxious, you're tired,
but like you said, you have each other and you're figuring out, how are we going to talk
to each other about this?
And for some people, the stressors may be exactly what you said.
Other people may have different stressors, especially if they're separated by distance or have
(03:42):
any number of other situations, but at the end of the day, there's some things that are
probably common to all parents, all caregivers going through this.
And I think one of those things is just how understandably difficult it can be for couples
to focus on each other while their child is ill.
How did you all experience this in your marriage?
Wesley (04:06):
It was really being in agreement on what our priority was.
And we always kept sight on Hattie and what's going to be best for her.
When the doctors would give that information, you know, we would have to digest it together.
We would have to talk about it and what their recommendations were, what their next thoughts
(04:30):
were.
But we never put ourselves in front of whatever was best for her.
And we knew that we were going to be able to have our time together.
But this was the time that we needed to focus on Hattie, and both of us never lost sight of
that.
Kady (04:50):
And I think throughout the whole thing, yes, our focus was on Hattie, but we were also
very deliberate about checking in with one another and asking, how do you feel about today
or how do you feel about that message that was just sent, whether it was something from
(05:11):
home talking about Hazel or it was information that the doctors and nurses came in to give
us.
As we went through it, I just remember thinking that I was so glad I wasn't in it by
myself because when this is happening, there's nobody that even comes close to being able to
(05:37):
relate to how you feel besides the person in the room with you or not in the room with
you.
Maybe it's just the person, it's the person who loves your child as much as you do.
And even though that looks different for moms and dads or grandparents, knowing that there
was somebody there that could relate to you that understood how awful it was, that understands
(06:03):
how tired you are or how confusing or scary the whole thing is, is really something that
kind of bonds you together. Under no circumstances
could I or did I want to face this -- regardless of the outcome -- by myself.
Clay (06:27):
Thank you both for sharing that.
The togetherness that you all cultivated when you went through this really, really stands
out.
So given your experience, what suggestions would you make to other caregivers about prioritizing
their relationships?
Kady (06:47):
I think one of the, I don't want to say most important because everything is important.
So something that I know was very helpful for us is that that checking in, like I said,
but also understanding that, that Wes was attempting to process the same information that I was
(07:15):
and that although the way that he processed it may look different than the way I did, we
had to give each other grace to get through it in our own way because if I'm sad,
or, you know, anxious, maybe he's mad or lost in that moment and that was okay. It's that
(07:41):
when you're that tired, when you're that afraid honestly, when all of those things are happening
and you're, you know, barely hanging on, you're not at 100%, it's not fair to expect
the other person in the room to be 100% to fill whatever gaps you have or are feeling
at that moment.
So I think yes, it was communicating, letting each other know how we felt but at the same
(08:06):
time, understanding that we're both operating at the bare minimum right now.
So if it gives Wes a few minutes of relief or sanity or the opportunity to, you know, clear
(08:28):
his head and that means he needs to step out of the room and -- I used to call it "taking laps" --
he would just go walk around the ICU floor with a cup of coffee, I have to let him do that
because that's how he is processing.
That is honestly, that's something he does at home.
If he's had a really hard day at work and he'll come home, he'll go, "Hey, I'm going to
(08:48):
go take a walk." And it's just around our yard.
But to realize that he's still him, he's still trying to process everything that's happening
in the only ways that he knows how.
So if that moment of normalcy helps him, even though I'm someone who I want you to sit
(09:11):
next to me, I want to say how I'm feeling out loud because I need to hear the words out loud
so that they're not bouncing around in my head.
That's not Wes at all.
So I think it was very important for us to understand that as much as we needed to be
this type of like weird medical/parent/advocate robot team, we were still the same people from
(09:38):
before
Hattie was sick.
Clay (09:41):
Wesley, I'm curious, do you have any thoughts on this idea of maybe grace, acceptance for
each other or any other things you want to share about ways couples can navigate this together?
Wesley (09:55):
It's important to have regular check-ins, and we would already do that outside of this
kind of setting, but in this setting where we're on a roller coaster every day, the check-ins
are more frequently to find out where she's at today with the latest news that we've heard.
(10:20):
You know, you're trying to approach the relationships with anybody from where they're at and we're
never at the same place.
So I can't expect her to be someplace, and that check-in helps me to understand where she is
at that moment and have that open dialogue.
Clay (10:40):
Sounds like as tiring and exhausting as that experience was, you all really were intentional
about tuning into each other and what was going on for the other person so that you could
truly support each other, not so much in the sense of being romantic but just surviving
(11:01):
day to day and helping each other to do that.
So that brings me to my next question about coping.
We know that coping styles can be different in relationships.
Some people prefer to talk about their stressors, while others may process internally instead
of externally.
Tell me a little bit about the differences in how each of you coped with your daughter's
(11:24):
illness and treatment.
How did you find ways to come together to support each other despite differences in coping
styles?
Kady (11:34):
So it's funny to be asked how I was coping because when I look back on the entire experience,
as a whole, I don't know if ... I don't think in that moment I ever considered what I was
doing to be coping.
(11:55):
I genuinely believed I was just surviving day to day.
I think looking back now, I see that some of the things I did that I didn't realize were
coping strategies,
maybe that's what they were in retrospect.
So, Wes and I have a large family. He is from Wisconsin.
(12:15):
We live here in Tennessee, and we just kind of have family all over, and things were changing
minute to minute with Hattie and everyone wanted updates.
Everyone was concerned and praying and
all of those things and so just in order to make it a little bit easier on us, I would post
on Facebook once a day.
(12:36):
I told our entire family and church family and the school that, hey, I will do my very
best to keep up with what's happening and then I will send one summary at the end of
the day and I'll post it on Facebook so that everybody can see it.
And honestly, it started as just to make one thing a little bit easier for me and not
having to repeat the terrible news a thousand times.
Clay (12:58):
Wesley, I'm curious about your perspective on acceptance and grace for how your partner
may be coping with this differently.
Wesley (13:06):
This all comes back around to being very deliberate about checking in, and so every time I would
approach the whatever is happening where we are at that moment through this journey,
I never expected Kady to be ... I never had an expectation of where she should be at.
(13:27):
So it was always accepting her for where she is right now through this journey and sometimes
it's one and it's usually driven completely off of whatever news we just received.
News of where we're at right now can change just by the next person walking through the
door.
Clay (13:45):
Thank you all for sharing that, both the challenges and the strengths that you all have in
yourselves and each other. And for those listening, your challenges and strengths may be
different, but at the same time coming back to that point of wherever you're at -- that
(14:06):
peace of acceptance can be so important in any relationship.
But we also know that there's this emotional side we've been talking about, but the practical
side is so important to this.
When a child is ill, dynamics and roles in a family or relationships often change. What
(14:26):
role changes did you all experience, and how did you adapt or delegate tasks when needed?
Wesley (14:33):
As we started spending time in the ICU, we started questioning about all of the things.
So another stress that came up with me is all of these external factors, things that we
couldn't have any control over while we were in an ICU room.
The number of people who stepped forward to support us in our community, in our school,
(15:00):
in our families, it was really overwhelming.
So there were a lot of things that we would do outside of the ICU that other people picked
up on our behalf.
It's very encouraging, very heartwarming.
So all of the roles were filled somehow, they were all filled.
Kady (15:25):
And I think what is important to point out about that is one of the hardest things to do,
at least for me, maybe not everybody --
I think for Wes, too -- is to ask for help.
And when your child is so ill and people are offering help, take it, take the help.
(15:47):
You do not, like, these people don't want you to have to do this all alone. Granted,
they have no concept of how hard it is.
And if we're all being honest, none of us want anybody else to know how hard this is because
it's awful.
But when people offer help, take it and allow them to fill the roles that you can't get to,
(16:11):
because it does help your family.
It does help your marriage or partnership or whatever relationship you're in with your
caregiver.
Having people on the outside support is so important.
That outside support system is invaluable.
But then there's a caveat.
That outside support system has to be people who are not only supportive of your child,
(16:35):
but they are supportive of your relationship because it is not helpful to be stuck in a
hospital with your partner and maybe you're irritated, maybe you're tired, maybe you're
sad, and to have an outside party make a negative comment about the person that you are literally
(16:57):
in the thick of it with.
You don't need that.
You already have enough.
They need to be supportive of both of you and of the two of you working together through
the experience, whatever that looks like.
Clay (17:10):
Yeah, something that strikes me about this is that this didn't just happen automatically,
you all getting through this together.
And it wasn't just one big thing either.
It was a lot of little things.
A lot of little things that you all were deliberate and intentional about, like communicating, taking
turns, talking things through, finding the differences and the strengths within that.
(17:37):
I just really appreciate that.
So my last question for you is, how has parenting a child through illness changed you or your
relationship with your partner?
In what ways have you grown together through this?
Kady (17:51):
I think being married is easier now because we've already done the hard stuff.
Our child almost died.
I mean, when I say almost died, we were literally told if she can survive minutes.
So to have gone through that ... I mean, I knew his character when I married him, but let's talk about putting
(18:21):
it to the test.
So somebody leaving the socks on the floor or dishes in the sink like, can we get real
here people?
Nobody cares.
Because those are all, when you're faced with the decisions like we were or the experience
we were faced with when Hattie was sick and we were away from Hazel and everything that
could go wrong felt like it did.
(18:43):
Something as simple as picking up in your house,
like, that's fixable.
And it's so easy to fix.
So even those little pet peeves just are so silly.
And then also there's an acceptance of, oh, well, guess what?
(19:04):
Nobody cares if I sleep late anymore.
Nobody cares if Wes goes to bed at 6 o'clock at night because, who cares?
It's just those things, you realize how trivial stuff you really let get under your skin is
when you've already, when you've been through it and then you get out of it.
(19:27):
You think you're going through the worst and you're never going to get out, but then you
get out.
Oh, yeah, no, no way.
This is so much easier than anything we had to do for the 367 days that she was sick and
in treatment, not that I was counting.
Clay (19:43):
This is an experience that I would not wish on anybody to have their child be critically
ill, but to see both of you sitting here today on the other side of it with this changed
perspective on life, on each other and feeling even closer.
(20:04):
I think it speaks to the fact that when you're going through it, it can be so, so hard.
But there really are opportunities here to find each other and find closeness with each
other as you go through this.
So I want to thank you all for sharing with us.
On behalf of the podcast, we appreciate Wesley and Kady, their time, intention and vulnerability
(20:31):
today.
Kady (20:32):
Thanks.
Wes (20:33):
Thank you.
Thank you for listening to Caregivers SHARE, a podcast lovingly brought to you by Patient
Family-Centered Care and Psychosocial Services at St. Jude Children's Research Hospital.
Please click like, leave a comment, or share this podcast with others who may benefit from
the support.
Visit stjude.org/caregivers-share for show notes and educational links related to each episode.
(20:59):
This podcast is for informational purposes only and does not render medical advice or professional
services.
This podcast does not establish a patient relationship between the listener and St. Jude Children's
Research Hospital.
If you have questions about individual health concerns, psychosocial needs, or specific
treatment options, please discuss with your child's medical team.
[MUSIC]
A child's diagnosis of cancer or another serious disease is difficult.
(00:05):
Families, guardians, and loved ones experience a range of emotions and often need support
related to their child's diagnosis and treatment.
St. Jude Children's Research Hospital brings you Caregivers SHARE,
a St. Jude podcast.
SHARE stands for support, honor, advise, reflect, encourage.
In this series, you'll hear stories and insights directly from the experiences of St.
(00:29):
Jude families and care providers.
Clay (00:31):
Your relationship with your partner can be more stressful than usual when you have a child
who is sick.
I'm Clay Culp, a social worker at St. Jude Children's Research Hospital.
In this episode of Caregivers SHARE, a St. Jude podcast, I'm talking with caregivers
Wesley and Kady Shell about how they kept their relationship strong while their daughter
(00:55):
was going through serious illness.
Wesley and Kady, can you introduce yourselves and tell us a little bit about your journey?
Kady (01:02):
I'm Kady Shell, our daughter is Hattie Lucille.
In the fall of 2021, she was diagnosed with anaplastic large cell lymphoma leukemia with
central nervous system involvement, which also triggered an even more rare disease called
hemophagocytic lymphohistiocystosis.
(01:24):
With that diagnosis, she was on a ventilator for an extended period of time, and we lived
in the ICU for a little over 11 weeks, and then were in treatment for another eight months
after that.
So, we have quite a bit of experience living in the hospital as well as living the outpatient
(01:48):
life.
And thankfully, today, Hattie Lu is officially 616 days into complete remission, so we are
very grateful to be where we are today.
Wesley (02:03):
I'm Wesley Shell, Hattie's daddy and Kady's husband, and Kady and I were able to go through
this journey side by side the entire time.
Clay (02:17):
Relationships can be challenging when no stressors are present.
When a child is diagnosed with a serious illness, it can add to and worsen strains that might
have already been present.
What were some of the biggest stressors placed on your relationship while parenting a child
with serious illness?
Kady (02:33):
Being concerned for our older daughter, Hazel.
Hazel was home, and there were a lot of hospital protocols, and just the criticality of her
sister's illness where we couldn't be with her, and she could not come up to the hospital.
So missing her was really, really difficult.
(02:55):
And then on top of that, just trying to make sure that everything at home was taken care
of. Were there, you know, the things that you think of when you're just at home, how many
things do you need to do in a day that aren't, you know, your paying job?
We needed to make sure that those things could continue to be taken care of.
(03:15):
And that just, I mean, it was all hard, honestly.
Clay (03:18):
Yes, there's so many competing demands, and at the same time, you're anxious, you're tired,
but like you said, you have each other and you're figuring out, how are we going to talk
to each other about this?
And for some people, the stressors may be exactly what you said.
Other people may have different stressors, especially if they're separated by distance or have
(03:42):
any number of other situations, but at the end of the day, there's some things that are
probably common to all parents, all caregivers going through this.
And I think one of those things is just how understandably difficult it can be for couples
to focus on each other while their child is ill.
How did you all experience this in your marriage?
Wesley (04:06):
It was really being in agreement on what our priority was.
And we always kept sight on Hattie and what's going to be best for her.
When the doctors would give that information, you know, we would have to digest it together.
We would have to talk about it and what their recommendations were, what their next thoughts
(04:30):
were.
But we never put ourselves in front of whatever was best for her.
And we knew that we were going to be able to have our time together.
But this was the time that we needed to focus on Hattie, and both of us never lost sight of
that.
Kady (04:50):
And I think throughout the whole thing, yes, our focus was on Hattie, but we were also
very deliberate about checking in with one another and asking, how do you feel about today
or how do you feel about that message that was just sent, whether it was something from
(05:11):
home talking about Hazel or it was information that the doctors and nurses came in to give
us.
As we went through it, I just remember thinking that I was so glad I wasn't in it by
myself because when this is happening, there's nobody that even comes close to being able to
(05:37):
relate to how you feel besides the person in the room with you or not in the room with
you.
Maybe it's just the person, it's the person who loves your child as much as you do.
And even though that looks different for moms and dads or grandparents, knowing that there
was somebody there that could relate to you that understood how awful it was, that understands
(06:03):
how tired you are or how confusing or scary the whole thing is, is really something that
kind of bonds you together. Under no circumstances
could I or did I want to face this -- regardless of the outcome -- by myself.
Clay (06:27):
Thank you both for sharing that.
The togetherness that you all cultivated when you went through this really, really stands
out.
So given your experience, what suggestions would you make to other caregivers about prioritizing
their relationships?
Kady (06:47):
I think one of the, I don't want to say most important because everything is important.
So something that I know was very helpful for us is that that checking in, like I said,
but also understanding that, that Wes was attempting to process the same information that I was
(07:15):
and that although the way that he processed it may look different than the way I did, we
had to give each other grace to get through it in our own way because if I'm sad,
or, you know, anxious, maybe he's mad or lost in that moment and that was okay. It's that
(07:41):
when you're that tired, when you're that afraid honestly, when all of those things are happening
and you're, you know, barely hanging on, you're not at 100%, it's not fair to expect
the other person in the room to be 100% to fill whatever gaps you have or are feeling
at that moment.
So I think yes, it was communicating, letting each other know how we felt but at the same
(08:06):
time, understanding that we're both operating at the bare minimum right now.
So if it gives Wes a few minutes of relief or sanity or the opportunity to, you know, clear
(08:28):
his head and that means he needs to step out of the room and -- I used to call it "taking laps" --
he would just go walk around the ICU floor with a cup of coffee, I have to let him do that
because that's how he is processing.
That is honestly, that's something he does at home.
If he's had a really hard day at work and he'll come home, he'll go, "Hey, I'm going to
(08:48):
go take a walk." And it's just around our yard.
But to realize that he's still him, he's still trying to process everything that's happening
in the only ways that he knows how.
So if that moment of normalcy helps him, even though I'm someone who I want you to sit
(09:11):
next to me, I want to say how I'm feeling out loud because I need to hear the words out loud
so that they're not bouncing around in my head.
That's not Wes at all.
So I think it was very important for us to understand that as much as we needed to be
this type of like weird medical/parent/advocate robot team, we were still the same people from
(09:38):
before
Hattie was sick.
Clay (09:41):
Wesley, I'm curious, do you have any thoughts on this idea of maybe grace, acceptance for
each other or any other things you want to share about ways couples can navigate this together?
Wesley (09:55):
It's important to have regular check-ins, and we would already do that outside of this
kind of setting, but in this setting where we're on a roller coaster every day, the check-ins
are more frequently to find out where she's at today with the latest news that we've heard.
(10:20):
You know, you're trying to approach the relationships with anybody from where they're at and we're
never at the same place.
So I can't expect her to be someplace, and that check-in helps me to understand where she is
at that moment and have that open dialogue.
Clay (10:40):
Sounds like as tiring and exhausting as that experience was, you all really were intentional
about tuning into each other and what was going on for the other person so that you could
truly support each other, not so much in the sense of being romantic but just surviving
(11:01):
day to day and helping each other to do that.
So that brings me to my next question about coping.
We know that coping styles can be different in relationships.
Some people prefer to talk about their stressors, while others may process internally instead
of externally.
Tell me a little bit about the differences in how each of you coped with your daughter's
(11:24):
illness and treatment.
How did you find ways to come together to support each other despite differences in coping
styles?
Kady (11:34):
So it's funny to be asked how I was coping because when I look back on the entire experience,
as a whole, I don't know if ... I don't think in that moment I ever considered what I was
doing to be coping.
(11:55):
I genuinely believed I was just surviving day to day.
I think looking back now, I see that some of the things I did that I didn't realize were
coping strategies,
maybe that's what they were in retrospect.
So, Wes and I have a large family. He is from Wisconsin.
(12:15):
We live here in Tennessee, and we just kind of have family all over, and things were changing
minute to minute with Hattie and everyone wanted updates.
Everyone was concerned and praying and
all of those things and so just in order to make it a little bit easier on us, I would post
on Facebook once a day.
(12:36):
I told our entire family and church family and the school that, hey, I will do my very
best to keep up with what's happening and then I will send one summary at the end of
the day and I'll post it on Facebook so that everybody can see it.
And honestly, it started as just to make one thing a little bit easier for me and not
having to repeat the terrible news a thousand times.
Clay (12:58):
Wesley, I'm curious about your perspective on acceptance and grace for how your partner
may be coping with this differently.
Wesley (13:06):
This all comes back around to being very deliberate about checking in, and so every time I would
approach the whatever is happening where we are at that moment through this journey,
I never expected Kady to be ... I never had an expectation of where she should be at.
(13:27):
So it was always accepting her for where she is right now through this journey and sometimes
it's one and it's usually driven completely off of whatever news we just received.
News of where we're at right now can change just by the next person walking through the
door.
Clay (13:45):
Thank you all for sharing that, both the challenges and the strengths that you all have in
yourselves and each other. And for those listening, your challenges and strengths may be
different, but at the same time coming back to that point of wherever you're at -- that
(14:06):
peace of acceptance can be so important in any relationship.
But we also know that there's this emotional side we've been talking about, but the practical
side is so important to this.
When a child is ill, dynamics and roles in a family or relationships often change. What
(14:26):
role changes did you all experience, and how did you adapt or delegate tasks when needed?
Wesley (14:33):
As we started spending time in the ICU, we started questioning about all of the things.
So another stress that came up with me is all of these external factors, things that we
couldn't have any control over while we were in an ICU room.
The number of people who stepped forward to support us in our community, in our school,
(15:00):
in our families, it was really overwhelming.
So there were a lot of things that we would do outside of the ICU that other people picked
up on our behalf.
It's very encouraging, very heartwarming.
So all of the roles were filled somehow, they were all filled.
Kady (15:25):
And I think what is important to point out about that is one of the hardest things to do,
at least for me, maybe not everybody --
I think for Wes, too -- is to ask for help.
And when your child is so ill and people are offering help, take it, take the help.
(15:47):
You do not, like, these people don't want you to have to do this all alone. Granted,
they have no concept of how hard it is.
And if we're all being honest, none of us want anybody else to know how hard this is because
it's awful.
But when people offer help, take it and allow them to fill the roles that you can't get to,
(16:11):
because it does help your family.
It does help your marriage or partnership or whatever relationship you're in with your
caregiver.
Having people on the outside support is so important.
That outside support system is invaluable.
But then there's a caveat.
That outside support system has to be people who are not only supportive of your child,
(16:35):
but they are supportive of your relationship because it is not helpful to be stuck in a
hospital with your partner and maybe you're irritated, maybe you're tired, maybe you're
sad, and to have an outside party make a negative comment about the person that you are literally
(16:57):
in the thick of it with.
You don't need that.
You already have enough.
They need to be supportive of both of you and of the two of you working together through
the experience, whatever that looks like.
Clay (17:10):
Yeah, something that strikes me about this is that this didn't just happen automatically,
you all getting through this together.
And it wasn't just one big thing either.
It was a lot of little things.
A lot of little things that you all were deliberate and intentional about, like communicating, taking
turns, talking things through, finding the differences and the strengths within that.
(17:37):
I just really appreciate that.
So my last question for you is, how has parenting a child through illness changed you or your
relationship with your partner?
In what ways have you grown together through this?
Kady (17:51):
I think being married is easier now because we've already done the hard stuff.
Our child almost died.
I mean, when I say almost died, we were literally told if she can survive minutes.
So to have gone through that ... I mean, I knew his character when I married him, but let's talk about putting
(18:21):
it to the test.
So somebody leaving the socks on the floor or dishes in the sink like, can we get real
here people?
Nobody cares.
Because those are all, when you're faced with the decisions like we were or the experience
we were faced with when Hattie was sick and we were away from Hazel and everything that
could go wrong felt like it did.
(18:43):
Something as simple as picking up in your house,
like, that's fixable.
And it's so easy to fix.
So even those little pet peeves just are so silly.
And then also there's an acceptance of, oh, well, guess what?
(19:04):
Nobody cares if I sleep late anymore.
Nobody cares if Wes goes to bed at 6 o'clock at night because, who cares?
It's just those things, you realize how trivial stuff you really let get under your skin is
when you've already, when you've been through it and then you get out of it.
(19:27):
You think you're going through the worst and you're never going to get out, but then you
get out.
Oh, yeah, no, no way.
This is so much easier than anything we had to do for the 367 days that she was sick and
in treatment, not that I was counting.
Clay (19:43):
This is an experience that I would not wish on anybody to have their child be critically
ill, but to see both of you sitting here today on the other side of it with this changed
perspective on life, on each other and feeling even closer.
(20:04):
I think it speaks to the fact that when you're going through it, it can be so, so hard.
But there really are opportunities here to find each other and find closeness with each
other as you go through this.
So I want to thank you all for sharing with us.
On behalf of the podcast, we appreciate Wesley and Kady, their time, intention and vulnerability
(20:31):
today.
Kady (20:32):
Thanks.
Wes (20:33):
Thank you.
Thank you for listening to Caregivers SHARE, a podcast lovingly brought to you by Patient
Family-Centered Care and Psychosocial Services at St. Jude Children's Research Hospital.
Please click like, leave a comment, or share this podcast with others who may benefit from
the support.
Visit stjude.org/caregivers-share for show notes and educational links related to each episode.
(20:59):
This podcast is for informational purposes only and does not render medical advice or professional
services.
This podcast does not establish a patient relationship between the listener and St. Jude Children's
Research Hospital.
If you have questions about individual health concerns, psychosocial needs, or specific
treatment options, please discuss with your child's medical team.
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