June 24, 2025 • 61 mins
When Rachel Shapiro’s daughter suffered a severe stroke just before her second birthday, Rachel and her husband were told their child might not survive. Despite the devastating prognosis, they refused to give up, navigating a complex medical journey that transformed their family's life. Their daughter now lives with significant medical needs, requiring a tracheostomy and ventilator support, which initially seemed overwhelming to Rachel.
What makes Rachel's story remarkable is her determination to maintain a full, vibrant life despite the intense caregiving responsibilities. Working full-time in marketing while managing her daughter's complex medical care, she and her husband have intentionally preserved their family's sense of normalcy. They continue to be active in their community, host events, and ensure their other children feel supported and engaged. Rachel's approach is characterized by a deep faith and a belief that their current circumstances serve a greater purpose.
Her perspective on caregiving is both practical and inspirational. Rachel approaches challenges with low expectations and a remarkable ability to adapt, viewing unexpected changes as opportunities rather than obstacles. She emphasizes the importance of open communication with her spouse, maintaining their relationship through shared goals, and making time for self-care, such as occasional shopping trips or simply enjoying a quiet meal. Her story illustrates that while caregiving can be incredibly demanding, it doesn't have to consume or define one's entire existence.
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Learn more about Confessions of a Reluctant Caregiver: https://www.confessionsofareluctantcaregiver.com/
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Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Natalie (00:00):
Hey guys, it's your favorite sisters with the
(00:02):
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate beinspired. Leave with helpful
tips and resources and, ofcourse, laugh. Now let's jump
right in to today's guestconfession. You know, I think
you get nervous every time wecome on when Andy counts us
(00:27):
down. Because I was actuallythinking about going, Jay, Jay,
Jay, Jay, Jay, Jay, Jay, Jay.
JJ (00:36):
It is, you know, every all my life, I actually think I've
been nervous like, I'm like,What is Natalie going to say?
That's exactly what I wasthinking, that you were
thinking, yeah, because I'mlike, I've always been
responsible, and I'm alwayslike, what? What is going to
come out of her mouth? I justand that's why I never wanted to
take, don't tell the story. Butwhat why I never wanted to take
classes with you? We were incollege. I was like, I will not
(00:57):
be associated with was itbecause I stuck my finger in
your potatoes at lunch? That isexactly right, and that is why
we are admitting I never wantedto be associated with her.
Natalie (01:05):
I totally did. She she was a senior, and I was a
freshman. We're going to take anextra second here, people, I
know you're listening forcaregiving, but we're going to
take this extra second. JJ and Iwent to school Hollins. It was
Hollins college at the time.
We'll get past the fact thatthey switched over to university
in a bigger diploma. But it wasfine. Still works. And she was a
senior, clearly she's older thanme, Yeah, clearly worked that
right in and I was a freshman,yeah. So even though we're all
(01:28):
two years apart, we are threeyears in school, yeah, and Emily
and I are two years in schooland age and and so I was JJ, was
with all of her friends, and shedidn't want let me sit at the
senior table? Yeah. And she waslike, go away. You're annoying.
And I was like, No. And then shegot and then she was like, go
away. And then her friend, Susantubes. Susan tubes, if you're
(01:48):
listening this podcast, you knowthat you know the story. And
then I leaned over and stuck myfinger in your mashed potatoes
and ate them.
JJ (01:58):
Oh, my true story. Rachel, kids, you have
Natalie (02:00):
stories, Rachel, instead of understanding your
children, you go sister
Unknown (02:04):
a year older than me, and we're 11 months apart. We're
Irish twins, and we arecompletely different. We are
night and day. I mean, we lookdifferent. We she was more of a
tomboy. I was the girly girl,and people would be shocked when
they were here. We were sisters,so much so we kind of ignored
each other in school, you know,like, wow, you're just sticking
your finger in the mashedpotato, mashed potatoes. But it
(02:26):
was a very small school, and thejoke was like, did you even say
hi to each other in the hallway?
No, I
JJ (02:31):
don't know, absolutely not.
I mean, we sure, no, I didn'twant to. But yeah, no,
Natalie (02:36):
no, okay, well, okay, Rachel already jumped in, but I
want people to know aboutRachel? Rachel is the newest
sister, yes, and you are goingto love this story, because it's
super unique. It is a differenttype of caregiving experience,
and I'm excited to have Rachelto share about it. So Jade,
let's talk about my
Unknown (02:53):
heart. I'm excited to have Rachel here with us. Okay,
keep going. Okay
JJ (02:58):
today, guys, we have with us, Rachel Shapiro and she, she
lives in Atlanta, Georgia andHotlanta with her husband and
five kids, right there. She's asaint litter kids. This what she
says, we run a busy household,really like you run like a team.
I love
Natalie (03:15):
default team. All you need is that serious man,
because somebody's going out.
She
JJ (03:19):
says they have seen and overcome challenges almost
losing a child, and now they'renavigating the world of special
needs and being the caregiver toa daughter, a miracle that they
were told would not survive.
Today we are going to unpackhere on the show Natalie, grief,
loss, what could have been andadjusting to a new norm, and I
think that that new normincludes building a really full
(03:43):
life around caregiving.
Natalie (03:47):
Oh yes, because care, in this case, started very
young, and so I'm not going togive it away, because we're
going to let Rachel tell herstory, but we are so excited to
have you on and I hope you'rewatching on YouTube, because
she's currently in grass thatneeds to be cut. That is our
standing joke. We were laughingabout what the background is
going to be. So if you are notwatching on our YouTube channel,
so you can see the video,because Rachel's beautiful, but
(04:09):
she's also got blades of grassaround her, and that makes me
happy. So very fresh, verysummery. I'm digging it, Rachel.
Thanks for being here.
Unknown (04:18):
No problem. I'm really excited to be here. This is the
first time I am sharing my storyin a public forum. So some
people know it just by beingpart of our lives, but I have
not shared a podcast. I havenot, you know, I've shared
glimpses, you know, bits andpieces on Facebook and a public
forum, but this is, like, thefirst time it's going live.
Natalie (04:37):
I love it, and you're gonna be wonderful, and I think
you're gonna bless so manypeople. Your story is going to
resonate with folks. And this isa different, again, a different
type of care. So let's startfrom the beginning. Let's start
give some folks some frame ofreference about because you
already said you have your Irishtwin. You're You're 11 months
apart, which I love. We've hadsome we've had a couple of Irish
(04:58):
twins, I know like it's a. Feltlike I'm like, I love that
phrase too. That's like, I likethat too. And so, um, tell us
about growing up and get us towhere, and you met your husband
and all that good stuff. Solet's bring this up to speed.
Unknown (05:13):
Okay, great. So, um, I am second to oldest of one of
eight children. There's sixgirls and two boys. Wow,
interesting. Because when I seeyou guys chatting like this, we
all get along really well, butyou guys have something, you
know, pretty unique there. Ilove that. Oh, we, you know, we
have a sisters chat, you know,that we all chat about. So it's
(05:34):
fun all the things that we weunderstand each other in a
different way, you know, kind oflike you do. But, yeah, I grew
up in a busy household. There's17 years between oldest and
youngest. We call it like theolder four and the younger four.
Oh, I still have, you know,siblings in the home, and
they're growing up entirelydifferent than I did, yeah, so
that's really fun. We are, youknow, connected. Some of us
(05:56):
don't all live next to eachother, but we try to, try to
stay in touch with one another.
Now, you're from New York,right? I am from New York. I've
tried to hide that, but nineyears living down south, people
can still pick that up.
Natalie (06:08):
Do not gain the southern accent. Girl, you have
just got to say us more morefrequent.
Unknown (06:13):
I could try to say y'all a bit more naturally. It
used to be y'all, now y'all. Butmy grandfather is from Augusta,
Georgia, so I say like, I dohave southern roots. Okay, so,
you know, not entirely anoutsider here. So, yeah, so grew
up in New York, met my husband.
We went overseas for a fewyears, and then moved back to
(06:37):
America and decided to plantroots in Atlanta, Georgia. How
old?
Natalie (06:42):
Where were you guys when you met? Because I'm like
an Interrupting cow for a sec.
Yeah, we,
Unknown (06:48):
I think we were about I was 20. He might have been 22
married. Everything was a prettyquick courtship marriage. You
know, all that stuff happenedpretty quickly. So it was a good
choice, though I was datingquite a bit, and, you know,
happy where I landed. So weeventually moved down south and
(07:08):
planted roots here, which, youknow, never thinking as we get
to the later part of the story,that we're without family here.
You know, living in a beautifulcommunity in Atlanta, Georgia,
but at the time, living yourfamily wasn't really a big part
of what we were looking for.
Yeah, and even now, it's okay,but kind of coming into the
story later on, it would behelpful to live in your family.
I could see that. Yeah, yes. Sowe moved to Atlanta, Georgia,
(07:33):
nine years ago. We had one childat the time. Actually, I had a
two year old, and while we wereliving abroad, we actually
started struggling with primewith secondary infertility,
which is kind of the first partof my story. And came to
Atlanta, started going throughIVF all the treatments, and
eventually, two years later, Ihad identical twin boys. So my
(07:55):
two, I have two sisters who havetheir own set of Irish twins,
which has its own set ofstruggles. You know, you're
pregnant while you're havinganother child. Yep, I have the
two twin, the true twins, but insome ways, I think they had it
harder, because it's like you'rejuggling different stages. Yeah,
we did everything at once. Sothank God I was blessed with
there's a four year gap betweenmy oldest son and my identical
(08:16):
twin boys. Okay, very grateful.
And while we were doing this, wewere planting roots, getting
really involved in the Atlantacommunity. My husband's a rabbi,
and we were here tasked being inAtlanta, which is building
connections with anyone inAtlanta. And it was, it's real.
It still is a beautifulcommunity and journey, and we're
(08:37):
really grateful for all of that.
So that's how it takes us a bitforward when we were ready to
kind of have another child. Iwent back for another IVF
transfer, and, you know, thankGod, became pregnant with my
first baby girl.
Natalie (08:54):
And so you had had all boys to this point. Yes, yeah,
so you'd had all boys. Now, letme ask you this, because you're
working too Correct? Yes. Okay,so I think that's important,
because I'm going to every nowand then interrupt you and be
like, Yeah, you're working, andtell folks sort of your
background on what you do forwork, because that's not like,
it's easy peasy,
Unknown (09:13):
yeah. So I could sidebar, it's funny, because my
husband just ran into someone,and they know I'm really
involved in the community work,and they know that I have a
special needs child at home. AndI just came back from a work
trip, and my husband was saying,Oh, my wife is away. They said,
doing what? And they're like,he's like, you know, she works
full time. And they're like, No,I thought she was a primary
caregiver, like as her solerole, which is very
(09:35):
understandable, but we'll getinto it. What I do now? Why I
hold on to my job, and I thinkas long as I can, I love working
in any case. So what I currentlydo now, I've been in marketing
my entire career. I started outin FinTech, and then went into
risk management and supply chaintech, and I always wanted to go
into healthcare, but it justnever happened for me. And then
(09:57):
I was recruited by the company Iwork for now, from. It's a home
care technology company, and Irun the marketing for them.
Yeah. So there's two softwaresoftware platforms. One is care
time, which is a home careagency management platform. We
do billing and take care of allthe hot Home Care ops. And then
ally, which is another similarplatform, but for those working
in the nurse registry communitywith 1099 caregivers. So I'm
(10:20):
really busy, and I joined thatindustry. I'll say this bit for
later, kind of how it all cametogether. Yeah, what happens
next? But I do work from home,which is a big blessing, but
I've, you know, been working allthis time,
JJ (10:36):
yeah, so let me actually you decided you wanted that fourth
child. You get pregnant with thefourth child, and it's a girl,
it's a girl. But Did you alwaysknow you wanted a big family?
You come from a big family whereyou're like, yes, you and your
husband both, we want 10
Unknown (10:49):
kids. I think on the first day with my husband, he
said, like, I want 10 kids, andI'm like, that's fine, but like,
can we take it, like, one at atime? And I think you shared
this, and he ended up writing abook about our infertility
journeys and sharing about thatpublicly, speaking across the
world, actually, in manydifferent forums. So it's just
interesting how that came intoplay. I say, I take it one at a
(11:10):
time, but I had twins, soeveryone laughs at me. But even
till this day, I say, you know,we'll see what happens. I feel
very blessed, and we'll see
Natalie (11:19):
I love that. So, so you go and you you get pregnant, and
you have your little girl, andlet's keep going.
Unknown (11:29):
Yeah, so I had my girl, and there were some
complications throughout thepregnancy and while giving
birth, but kind of fast forwarda year and a half a bit before
her second birthday, aftermeeting most of her milestones,
I'm really doing very well. Abit before her second birthday,
she seemingly fell. I wassleeping late that day. Came
(11:53):
down. She fell. But kids fallall the time. I twin boys again.
Remember that, oh yeah, shefell. And was acting weird. Her
eyes were doing weird things.
She didn't really want to eat,and we put her to bed, and she
was just acting weird. A parentknows when something's off, and
we actually had a doctor at ourhome at that time. He's like,
you really should take her tothe hospital. And we said, yeah,
(12:15):
like, we know. So we took her tothe hospital, and they did all
the scans, all the things, andthey said we're treating her for
concussion, and at this point, Iknew nothing about anything
medical, like, you know, youtrust doctors. And again, maybe
that was the right call at thatpoint. That's okay, but I didn't
even have the awareness to askor pry into different things,
because I didn't really knowmuch, right? But they kept her
(12:36):
there for two days for aconcussion, and actually, thank
God I was working, because Iremember working at it might
have been a Sunday, which isalso, I do tend to work a lot,
but it might have been like 10or 11pm at the hospital on a
Sunday night or Monday night. Iforgot if it was a work day, and
I was just really tired. Andsaid, You know what, I'm going
(12:56):
to spend the night here. Welived five minutes from the
hospital. I said, I could havegone home, but I actually
decided to put my laptop. To putmy laptop away and sleep on the
bed in that room. And in middleof that night, that night, she
CO, you know, wasn't breathingwell, people ran in. They
thought she was having aseizure, and I was watching my
child seemingly have a seizure.
(13:21):
I didn't know anything. Ithappened again an hour later,
and it was a, I guess, coded intheir language. They kicked me
out of the room. I had again.
Now I know so much more. I'vebeen in hospitals for months,
you know? I'll share what thatis, but at this time, I'm like,
What's going on here? This iswhat you see in the movie.
They're like, get the mother outhere. 10 people run into the
room and they they don't reallyknow what's going on, because
her stats are just dropping. Soin retrospect, and what I found
(13:42):
out later, you know how theytell people, when you see
people, you know, older peoplehaving a stroke, they do, like,
a weird thing with their mouthand like, Twitch, ache. My
daughter was doing that in frontof my eyes. I didn't know at the
time that it was a stroke. Wefound out later, but she was
stroking. They thought it was aseizure. Again, not blaming
anyone. But I didn't even knowthat. I didn't even know a child
could have a stroke at thispoint, like I knew nothing. So
(14:03):
you know, throughout this wholenight, we didn't keep our cell
phones on back in these days,because life was simple. Life
was good. And I tried calling myhusband like all the time, he's
not answering. I'm panicking,pacing up and down the hallways.
And it was really bad. It wasreally, really bad. We didn't
even know what was going on atthat point. Just to pause here,
(14:25):
you know, I finally got hold ofmy husband and I said, you know,
we, throughout in our life,we've said, like, you know, it's
bad. I'm like, you know how allthose times you said things were
bad, those were really not likenow it's really bad, like, come
to the hospital immediately. Sowe found arrangements for my
daughter, I mean, for my otherchildren at home, rushed over to
the hospital, and we wentthrough our day. They didn't
(14:49):
know yet she had her stroke, somuch so that my husband was
teaching a class at 730 thatnight, and our doctor calls and
says. Get to the hospital now,and we just still didn't know
what was going on, like we weregoing on with seemingly our
regular day, like my husband wasteaching a class, and we get to
the hospital, our close friendsmeet us there, and they say she
(15:09):
had a stroke. It's devastating.
Stroke again two days later, twodays prior, she was I pictures
of her that Friday holding ontoa ball in therapy with the
biggest smile, and they don'tknow what happened. Wow. They
basically tell us she is notgoing to make it. And again, for
(15:29):
those who who have been throughthese sort of scenarios, they
like to prepare you for theworst, but no one was giving us
any glimpse of hope. It was areally, really bad stroke, and
they all said like she's goingto succumb to her the pressure
in her head at some point, like,it just, it's going to happen.
Natalie (15:45):
I'm going to I'm going to take a pause here, because
I'm going to hit that. We've hitthat little mark, and I want to
take a break for just a second,because I think that's the right
spot that people have not givenyou. There's no hope. And I
can't even imagine that asparents of a one and a half year
old like not understanding solet's take a break right here.
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JJ (16:54):
All right, everybody, we are back here with Rachel Sapiro and
her daughter has had what theyfound out to be a stroke, and
they she's basically been toldthat she's not going to survive.
And Rachel, she's in thehospital. You guys have been
given this news. She's in thehospital for five months,
though. Tell us when it changes,because you all also get
(17:17):
training, because now they'resaying, Okay, you have a child
with special needs. Tell usabout that five months and what
pivots in there.
Unknown (17:24):
Yeah, so it was a long journey. From the moment they
told us she had a stroke, so shewas intubated automatically, and
we kept hoping that she wouldget extubated and right taking
home a child on life support isdramatically different than
taking home a child not on lifesupport, and we were real. You
talked about being a reluctantcaregiver. We were really
reluctant with the the trach,the vent. We were pushing it
(17:47):
off, not just because we wereclinging out to hope, but that
meant so many things for ourfamily, right? Like we wanted
her home, but what did that looklike?
Natalie (17:56):
Well, and I want to interrupt for a second, she's
going home on a trach, and Iwould feel super intimidated by
that. And you're right, you'vegot other baby nuggets in the
house. You've got three otherkids that are in the house, and
you're having to navigate. I canimagine that being scary for the
boys, even if they'd come visither, right? Yeah, go ahead.
Unknown (18:18):
Yeah. So there's different aspects that not to
jump all over the place, butwhen they brought in a trach for
the first time to the room, justto show me what it looked like,
I was like, I can't even look atthat. Like, forget about
touching it. Like I just can'tand that was the emotional part
of me, like, I can't even thinkabout learning how to do this
for my child, because it was sooverwhelming. Now, probably most
(18:38):
of your listeners are goingwatcher. You know, whoever's
watching this will think thatthis is crazy, but we forgot the
part where we had about sixweeks, three weeks where they
didn't know if she was going tosurvive. One day a nurse said,
Oh, you're still here. I didn'teven think you were going to
survive, but it means you'restill here. And that was the
first part of realizing, like wesurvived, because none of the
doctors really told us that,which is, you know, it's okay,
(19:01):
they had to prepare us for theworst. So thank God she
survived, but we were still inso much of a limbo till she
ended up going into rehab forher last, you know, portion of
the stay there. But I decided atthat point, along with my
husband, that we wereexperiencing so much loss and we
wanted to rebuild. We decided togo for another embryo transfer
(19:22):
during this period,
Natalie (19:23):
right in the middle, yes, in the middle of all this
Unknown (19:27):
stroke was in June. I think I went for my transfer in
August. And I talk about this,the fertility clinic was right
next to the hospital, and Iwent, my day was spent in, you
know, the mornings or whatever,going in and out of those
hospital, the car garages. So Iwould go, I say, like I had an
analogy, like, up and down. Igo, like, to visit my daughter,
(19:49):
who is hopefully on the mend,and then up another escalate,
you know, up another car ramp.
I'm trying to build new a newfuture for ourselves.
JJ (19:58):
How old are you at? That time. I didn't mean to interrupt
you. How old are what's thefamily dynamic there? How old
are you and how old is everybodyelse? The littles
Unknown (20:06):
at that time, my my daughter was really just a month
shy of her second birthday. Um,my twins were probably almost
six, and my older son was, youknow, nine. We knew we wanted
(20:28):
more children. And I know thereare a lot of people out there
who may have special needschildren. There is something
about having a child after onethat has special needs. It gives
you a lot of positive energy,you know, just comfort. There is
a lot to that, yeah, but we werereally in the thick of it, yeah.
And then what happens next? Justto kind of answer your question
about the training, I wasthrowing up in between the
(20:50):
training, falling asleep. Imean, that was a lot to take
home a child with life support,with a trach event. You need to
really go through rigoroustraining, and I'm thankful for
it, because we're we know whatwe're doing. We really, she's a
bit more stable now, but we'vehad to save my child, you know,
my daughter's life together. So,you know, we went through that.
(21:12):
Thank God we had I was pregnantwhen we brought her home. We
brought her home when I was afew months pregnant after a five
month stay. And what that meantfor for the siblings was we were
just going to continue asnormal, right? If anything
needed to be different, we letthem know. But I think for my
older boys, they just wanted toknow that Mommy and Daddy were
(21:33):
sleeping at home at night. Thatwas their biggest we took time
sleeping in the hospital. Therewas a lot of there was a lot of
concern around that, when everysingle night where were mommy
and daddy, but once we were allhome, it's like they almost
didn't care as much that mytheir sister looked a bit
different. Obviously, I'm surethere was a level of grief that
came along with it, because myolder son used to play along
with my daughter, but we wereall home, they just wanted us to
(21:56):
be home, and for them, thatmeant stability. So you probably
think we slowed down in terms ofour community, work and hosting
and everything, I kid you not. Idon't know how we had the
strength to do so, but it gaveus the strength to just
continue, right? We had thischild who needs special care. We
had to continue doing what weloved despite it all, and we
(22:18):
really did nothing stops us. Imean, we have a monitor that we
bring up and downstairs. If weneed to watch her, I run up and
down. It's just a full, fulllife. And thank God gave birth
to my baby girl. She just turneda year. So just bring everything
full circle. We'll dive intomore of the, you know, caregiver
aspects. But that's kind ofwhere we are today,
Natalie (22:41):
isn't that so there's, I mean, I know that our
listeners are probably havelike, 1000 questions, because I
know I do, like, it's, you know,how do you make that decision?
Because we've had other folks,like, we just had Jess, was I
love Jess, plus the mess, yes.
Jess chose to have a son, morechildren after just her son,
Jessica pate. Did I think aboutthat? And I think most people
(23:05):
would think, Oh my gosh, this isso hard. How can you have more
children? And here's the otherthing is that if you when you
see Rachel on the YouTube, oryou see her thing, Rachel looks
like she's 20 now, she has beengiven the gift and blessed with
youth. And so you would think,how is this sweet young lady?
Unknown (23:28):
But I'll take it. Yeah,
Natalie (23:30):
girl, we all take it.
We will always take it. But it'slike, how do you have the
energy? And I hear you justsaying it was so important to re
establish a new normal, andmaking it normal, like truly
having normalcy for your foryour boys, for the kids, and
incorporating that yes, we canhave we do not have. Yes, our
(23:53):
life is different, but it canalso still be good and full. I
love how you said we're going tohave a full life. It was so
important for you and your
Unknown (24:05):
husband, yeah, and it's interesting, because I don't
want anyone to think I wasn'ttaking any help. We had meal
trains for months. I mean,really we there was a lot of
support that we needed fromfamily and friends to get
through this, um, picking up mykids from school and all those
different aspects. But once wewere all home, right? The
stability just meant a lot. Itmeant a lot to everyone. So I
(24:25):
think for myself, for myhusband, and for my family,
losing ourselves and having togive up the things that we love
and our family looking sodifferent, right? In terms of us
always having an open household,if my boys would have felt like
we are not doing that, we'restopping everything now, that
would have been a dramatic shiftfor them, and this has kind of
been our mentality. You know,it's like when life gives you
(24:47):
lemons, you just make lemonade.
I We don't say that often thehome, but as I'm thinking about
that now, that's kind of what wehave done. Yeah, right. Maybe
family vacations are not us allgoing together anymore, but my
husband takes the boys to makesure. They get that sort of
excursions that they can right?
I can't go with them andeverything now my daughter is
it's hard to travel with her,for sure, not. I don't want to
(25:10):
take her on a plane right now,and things look different. But
we make sure that our boys stillfeel like the older ones, at
least, because they're the onesthat are mostly impacted, that
they feel like we are. They'reliving an everyday regular life,
even though it might lookdifferent than their friends in
some ways, they're a bit morespoiled in other ways than their
friends. And I want them to knowthat they still get vacations,
(25:32):
they still get to go away, theystill get to do that so and they
love hosting and, you know,having that community
involvement, so it would havebeen too much of a shift for all
of us. I remember when I spoketo one person, when they when I
found out that my daughter wasgoing to be trach, you know,
vent and, you know, in that typeof medical, fragile situation, I
(25:52):
spoke to one person, and shetexted me back. I gave up my
life. I this was while mydaughter was in the hospital.
She said, I gave up my life. Igave up my job, I gave up
everything, and I turned to myhusband, fried, and I said, this
is horrific, like i This can'tbe us, and we somehow just made
a decision, not necessarilybecause of what this person
said, but that that won't be us.
This person, this was yearslater. I don't want to use the
(26:13):
word bitter, because you'retaking care of her child, but
it's hard when you lose yourselfbecause of different things that
happen to you. You're in controlof your own destiny, right?
Yeah, and I think it's made mestronger for it, knowing that we
can do all the things we love,despite how I have this, you
know, new aspect of caregivingin my life. And, you know, could
talk more about that. Wow,
Natalie (26:37):
I know I told you. She was like, it's not slowing me
down. Feel sleepy right nowbecause, and not sleepy because
I'm bored. I mean, like, I amexhausted for you, because you
work your your you and yourhusband are actively engaged in
the community, and I'm assuming,honestly, the whole family is,
like, at some level, the I'msure the boys are as well. I
like, how we could we've got aseparation of age, like, you got
(26:59):
the boys because they're older,and then the girls and and
you're doing all the things, andyou know, I think it's
important. We've had otherguests who come on and they talk
about, like Jessica Patay talksabout she and her husband have
always split vacations becausetheir son can't go, and it's
very hard, and it is an acceptedthing. And the first time they
(27:22):
have gone out, they went on anextended vacation, because he's
older now, and they went on anextended vacation for the two of
them. But that was very nervous.
I remember she was saying, we'regetting ready to go on that it's
the first time we're doing that.
And I think, let's talk. Let'sgo into relationship. Let's go
into yours and your husband'srelationship. And I mean, like,
I know that something that wasreally important to you is that
(27:44):
you and your husband don't loseyour relationship because of
care and that, and I think thatis, this is not just because you
have a special needs child.
You've got a literary kids. Ilove saying a litter. You've got
five kids, even if none of themwere special, even if you didn't
have a special needs child, thatis for so many parents that I
see, because I don't have kids,but I've seen so many parents
(28:07):
give up so much of themselvesand their their self themselves,
what their things are, thingsthat they enjoy, to sacrifice.
And I hate the word sacrifice,because I don't think it should
be a sacrifice. I think youshould be able to how can you
have but how can both things betrue? But how do you and then
their marriage is affected bythat? And then, I think it's why
(28:27):
a lot of divorces come afterkids go to college or go or go
on at move out of the home. Whatis your all's what is, how have
you and your husband been ableto maintain let's start with
your also relationship?
Unknown (28:42):
Yeah, it's a good question. I will say that it is
really nice that he's not out ofthe house, you know, at a nine
to five job outside the home,because he's around more. So
even if we are not necessarilyspending time right on working,
maybe we see, you know, we sayhi, we pass the monitor one
another, if, if a nurse doesn'tshow up, but we see each other a
(29:02):
lot, which I know some couplesare not fortunate. You know,
they're all running around doingwhat they need to do. I would
love to say that there's asecret. And I would love to say
that we are able to go on datenights or go on vacation
together, but we cannot becauseof, you know, lack of care. I
will say the fact that we areboth building something
together. Going to we'll host anevent together. We are
(29:24):
contributing together in thatnonprofit community sense. We
are building a family together,but we're also building
something else, and I think thatgives us both a commonality and
a goal. You know, we'll createan event. Say, what do you think
of it? You know, we also have ateam who works with us, but I'm
kind of the co founder, so, youknow, he relies on me to kind of
keep things in balance. So it'sreally nice in that regard. So I
(29:48):
think we're building twodifferent things. And then, as
it relates to the caregiving,when it does come to the tough
things of it's only happened afew times, but I need to save my
daughter's life together. It'slike. Wow, we're doing something
like, wow, together. Like, we'renot doing all the frivolous
things, you know, in life, butthis is really meaningful and
impactful now, in terms of,like, the nitty gritty of the
(30:11):
stress, right? Not getting intothe relationship that can be
really, really tough. And at thebeginning, my husband and I were
processing the loss, right? Wespeak about, you know, you
touched on the grief and loss.
Yeah, I was mourning the fact,and I say this candidly, when my
daughter had her stroke, I hadbought such cute we live in
Georgia. I bought such cuteGeorgia peach swimsuits for my
daughter that summer. They werewaiting at home. And I was
(30:33):
mourning the fact, two monthslater that she didn't get to
wear that those that season,even, even if she had a
miraculous cure. The next day,she didn't get to wear those
like, I had to try to returnthem, or I couldn't look at
them, right? She had a wholecute, you know, section of
clothing to wear that season,and she couldn't wear that. So I
(30:53):
was mourning while my husbandwas like, going through a
different sense of grief. Sothat's something that we had to
address. My husband speaks aboutthis when he discusses a
challenge of, like, fertility,right? Couples process things so
differently and just, how do wemaintain the relationship? I
think it's the communication of,how are you processing this? It
might be really hard for me thata nurse didn't show up that day,
(31:14):
but hypothetically for myhusband, he might say, Okay,
let's just go with the flow. Youknow, we'll do what we need to
do, because he might be morematter of fact about it. So it's
just the communication aspect,like one thing that's hard or a
struggle for me might notnecessarily be a struggle for
him, yeah, and I think that'sjust what helps us kind of stay
true to ourselves and ourrelationship, because we'll
(31:36):
continue to have ups and downsin this journey of caregiving,
and we need to prioritizeourselves. And you know,
hopefully we'll get away soonworking on that, but I do
realize we just, we try to findtime in the home. We're again an
evening out, even though it'snot like some large vacation,
Natalie (31:56):
yeah, but that's, I think that's important, and
staying true to yourrelationship, and I appreciate
you saying it's not like thesecret sauce, because honestly,
if there was a secret sauce, youjust write a book about it and
go on the Oprah tour. Girl, beselling it. You just be selling
it. I mean, you're a marketingguru, so like, let's we'd just
be selling it. Yeah, we're goingto take a break because they
don't want to come back and wantto talk about the boys, and
(32:17):
we'll be right back
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JJ (33:08):
All right, everybody, we are back here with Rachel Shapiro,
and we're talking aboutcaregiving and how it impacts
families. And we've talked aboutrelationships with a spouse she
has three older boys than her,than her daughter, and we want
to talk about them andrelationship with the boys and
you also have that youngerdaughter. How has I guess my
(33:31):
word would be, how have youadjusted them to your new norm?
Like, what is the new norm? Howhas this impacted them and your
relationship with them?
Unknown (33:43):
Good question. Yeah, it's a good question. So for
better or worse, this wholestage really went over my twins
head. You know, everyone kepttelling me, do you think your
children need to speak tosomeone? And I was very open to
it, right? I really am. Butseemingly, like the twins were,
I want to say, four at the time,and they just cared about who
(34:05):
was feeding them, who wasclothing them. Were they playing
with that day? They didn'treally understand what was
happening, and it kind of wentover their head. So I don't know
that they didn't for they forgotwhat the norm was before that.
But now again, they're still dayto day. Is they're going to
school, they're playing withtheir friends, they're getting
their presents, they're gettingtheir presents. They're getting
their food. Like, yes, they seeaspects of our lives, and we
(34:26):
have a nurse in the home. But itmight sound crazy, but it's not
really impacting them in the waythat a four a six year old,
they're almost seven. Now, whatthey really care about my older
son, he just cares about memaking home cooked dinners for
him, like, I'm telling you, he'ssuch a foodie, and all three of
my boys, actually, when Mother'sDay comes around, it's thank you
(34:46):
for making me dinner. So maybethat's the trauma they
experienced from all those mealtrains and all the delicious
food other people made for us,yes, but they're so
appreciative. Like, when I makethem good dinners, you know how
important is for kids when youcome home, you know, at the end
of a long day, I. Um, they justwant that home cooked meal. So I
think for them, like, if any ofthat was out of the norm and
(35:06):
they felt like we were runningto the hospital, I try to
communicate with them if someoneif we have an appointment that's
in the hospital, if there's achance we might be running late,
or if they might have someoneelse pick them up, because
that's important to them. Theydon't want to be surprised. But
other than those aspects ofagain, getting to school, coming
home, who's babysitting them,they they feel that. They sense
(35:28):
it. But we take care of mydaughter. They're not involved
in the care as much, and theytrust that, you know, the kids
trust us that we're taking careof their sister well. So
Natalie (35:40):
I don't know. I know, but I hear actually. I hear you
saying things, Rachel, thatactually, so especially with
them being young and developingbrains, we know brains that as
especially as they're developingchronic predictability, that's
what predictability routine, andthat's what I hear you saying
that your boys thrive off of andask from you in their own way,
(36:06):
not verbally, probably, butreally, but you know, and you're
there, you're there meeting thatneed. And it's not tangible
things. It is time spent with orI need to know who's going to
pick me up so that I don't haveto be scared that, you know, all
of a sudden, it's really aboutsaying everything's okay, so,
you know. And you
Unknown (36:27):
did. We did if we came home, if we were walking around
like and that's what happened,actually, I forgot to mention
this. When we found out that mydaughter was likely not going to
or they told us might, we had toexplain to my son. And we did
allow my son to come to thehospital, they made an exception
for him to be allowed into theNICU to potentially say goodbye,
if that would be the case,right? We had to think about all
(36:48):
those things, and we were cryinga lot, rightfully so, but they
met and made him sad once weonce, we stopped crying. I don't
know when that happened, but Iimmediately saw a change in him.
He was reflecting what we did.
And I think that's what happensnow. If we were walking around
nervous, if something were goingon, he would sense that. And I
think parents can infuseconfidence in their children
(37:09):
despite what is going on. Andsorry to cut you off, but that
was an important point that Imissed earlier words,
Natalie (37:17):
though, Rachel, if they reflect, I think that is
probably the biggest takeaway,is how, and it's hard for the
adults, if you think about itlike I can only imagine, and
really not even, but the theemotions, the range of emotions
that you're going through, andyou are also pregnant at the
same time, so you get all theextra hormones, you're Welcome
(37:38):
and but all of that andthinking, okay, the little
people are looking up to me, andthey're looking for direction
that everything is safe andsecure, yeah, and that is
exactly what they want. And thatcan be hard, and I think about
it like for when, when Jason wassick, or whenever we have things
(37:59):
that are going on with mom, likeour mom can be like,
everything's going fine, andthen it is full on hot mess, and
911, and then we're back again.
So it is this ebb and flow thatchildren have to have built
resilience on, and they learnthat from their parents.
JJ (38:16):
So I want to talk about you, Rachel. Are you okay with that?
Let's talk about Rachel. So Iknow, let's talk about Rachel.
So I know you're a person offaith. And I would, sometimes I
would say to myself, we've askedpeople, do you say, why God? Or
do you say, Yep, this is I'm onthis path, and there's a reason.
What is your attitude towardsthis? And what have you kind of
(38:38):
done, your conversation withGod? Your conversation? Yeah, I
have conversations all the time.
Unknown (38:42):
Really great question.
So I was just telling the storyover to someone else yesterday,
but it's something that stickswith me. And I know not everyone
reacts like this, but as we werein the hospital, found out that
she likely was not going to makeit, my husband and I were
crying. It was obviously a hotmess. I remember saying, How can
I even be upset at God, when Ihave three other healthy
(39:05):
children and a wonderful spouse?
And I remember thinking in thatmoment, I have friends who are
not married, my friends who aremaybe not married to nice men. I
have friends who don't have anychildren, and I have three. And,
you know, I have a job in acareer and a community. And in
that moment, I was like, howcould I complain to the person
who's given me all the greatstuff when I have all that stuff
(39:25):
and be upset for the oneseemingly bad thing? Now, I do
understand, at a higher level,this happened for a reason. I
will never know exactly why Ikind of get to be I think about
things in a bit of a morbidsense. But when this happened,
we were supposed to have a grandvacation to a couple of
countries. That summer supposedto be a big family vacation, and
we had to cancel that. But Isaid, You know what? I'm sure
(39:47):
she saved our life in some way.
It could be a bad accident wassupposed to happen, and this is
how I think I know not everyonedoes, but I have to convince
myself that it is for a goodreason. And the only way I could
think about it being a good fora good reason is she took the
hit for all of us. Likesomething might have potentially
bad happened, and she just, shesaved us all from going on this
vacation. I know that might notbe the reason, but there's some
(40:07):
greater reason why she is now aspecial needs child in our life,
and we lost, you know, her.
She's still in a minimallyconscious state. You know, from
a neurological perspective, shehas severe brain damage. She's
not with us in the same way thatshe was before, and I won't know
the reason why, and I I'm okaywith that. I just know it's for
(40:28):
the good. So I didn't ask, Whyme? Because otherwise I would
have been asking, Why me? Whydid I get to get married? Why
did I get to have a spouse? Whydid I get to have three
children? And I know it's areally, you know, a certain
level of belief, but it's, it'show I coped, and maybe that was
ingrained in my upbringing.
Yeah, and other things happenedto me my life, but this was a
(40:49):
pretty big one, so that's kindof what I was going through at
that point.
Natalie (40:54):
I really appreciate that Rachel and I, and you know,
it's really the stories we tellourselves. It's like when you
see other people's lives. I canremember sitting there on the
14th floor in New York, and Iwas feeling, you know, every now
and then I'd be like, I'd feltlike a little bit like Rapunzel,
like I was in this, this whitetower, and I was kind of held
hostage, because I'm in thisgreat city, and it's so great,
(41:16):
and I'm thinking, whatever. AndI would and but I felt like a
hostage, like I had no control,and so I would look out the
window at all the other highrises, and I would make up
stories for the people, and it'sthe stories that we tell
ourselves, and I would alwaystry to make them happy, stories
and or but I agree with you inthe sense of, I think it's what
(41:38):
do we tell ourselves to cope.
And I don't think it's that it'swrong. I don't know that it's
not about being right or wrong.
It's about how did that help youget through that time? But she
was meant to be in your lifeexactly the way that she is, and
she'll be exact, she'll be thereexactly the amount of time that
she's meant to. And I'm a I'malso, we're big believers in God
(41:59):
as well, and and his plan isperfect, and so she's meant to
be here, because otherwise youwouldn't be here with us. Yeah,
I think about things like that.
So sharing your story, yeah. Andso tell let's talk about care,
the care piece of it, and howcare. Because I know we're
getting close to our times timefor Sister questions. I can't
(42:19):
even believe that, but I loveRachel, because she's a sister.
Rachel because she's a sister.
What does care look like for youguys? Now I know that it's
probably evolved and likebecause you said that you had a
nurse. I caught that for a sec,so you had a nurse that provides
support to you guys. What doescare look like for you guys?
Unknown (42:38):
Yeah, so I'll dive into that, but I just wanted speak
about the reluctant caregiverpiece, right? I spoke about the
fact that, like, I kind of copedand just did as I needed to. But
in the hospital, when they weretraining us, I kept saying I
didn't sign up for this. Ididn't want to be a caregiver.
I'm in business. I'm like, youknow, I was not the
compassionate, empathetic, let'sbe a nurse. Save the world in
(43:01):
that aspect, I wanted to be inbusiness. But in healthcare, you
know, that aspect of it, butthis was like, not for me. And I
kept telling everyone I did notsign up to be a nurse. I didn't
want this in my life. Like Iconsciously made a decision to
not go to medical school or tobecome a nurse. And here I am
being faced with needing to getoriented with all these things,
just kind of touching on thebelief. Someone said to me, I
(43:23):
told them, I didn't sign up forthis. I did not sign up for
this. I went around saying thisfor like, at least two weeks.
Someone said there's actually aconcept where your soul up in
heaven before it comes down toearth, gets to pick its package
and your of life. That what itlooks like. And guess what? Your
soul actually did pick this one.
So when you go around saying youdon't, you just sign up for
this, somewhere along the line,you your soul picked this
(43:44):
package of the family that youhave in the husband and
everything. And after that, Istopped saying it, because I
kind of knew they were right. Iwas like, Okay, I give up. I
surrender package.
Natalie (43:55):
It is true. I don't disagree with that. Keep going,
Unknown (43:59):
yeah. So with the care we were set up with nurses. We
went through a lot of nurses. Atthe beginning, we learned
different things. We neededsomeone who was able to get on
the floor and be physicallyactive with my daughter, lift
her up. We had a lot of stairsin my home. Did we have nurses
who were okay with that? Thatmight have meant different
levels of physical fit levels orwhatever. There were a lot of
(44:21):
different identifying criteria,criteria that we kind of learned
along the way, nurses that werenot working for us.
Unfortunately, it was a prettyrocky start. Then we found an
angel nurse who came. She hadher own journey, and she joined
us for you know, it wasinteresting just how her life
aligned to kind of fall into ourlap, and she was with us for
(44:44):
quite a bit, then she had toleave for personal reasons. And,
you know, we've always haddifferent nurses along the way.
We are now in a bad rut. Youknow, we've had some different
nurses, and there's a lot ofdifferent personalities, and
have a busy house. Sold we arearound. I like to think that we
provide a good environment fornurses, but there's a lot of
(45:05):
things that come into havingsomeone in the home that's
right. And even though you couldthink it's going well, I won't
share too much, but I've gottenemails of crazy scenarios of one
nurse not liking that anothernurse changes a diaper or PJs
like, I mean, it could be asbasic as that, and I'm caught in
the middle, and I never realizedthe how much monkey in the
(45:27):
middle I'd be doing betweennurse a, Nurse B, Nurse C, the
home care agency, provider. Andit's really that's what's
draining, you know, talk abouthow I do everything like that is
what drains me most.
JJ (45:37):
It's as a staffing company, you are a gap. You are a boss.
Unknown (45:41):
Yes, even though we have a home care agency, you
know, who works with us, it'sjust hard because I'm in the
home and I see the things theysay and I, you know, there have
been comments about things mykids have been doing which
hurts, which I don't think itwas right that they said it, you
know, I'll defend my children.
But different things thatwonders might have taken a
different things that might havenot make them feel comfortable
(46:01):
in the home. So it's a lot ofnavigating that we are in
Georgia. So we do not get 24hour care, even though she's on
life support, which is a bit ofa challenge. So at night, it's
up to me, my husband, he's incharge of my medically fragile
daughter monitor, and I'm incharge of the baby monitor. So
that was also a harderpostpartum, because normally I
(46:22):
could have his health with baby,but he never knew if later in
the night, he'd have to get upto alarms for my daughter, just
disconnecting herself. Nothing,you know, dramatic, but he was
kind of, he still till today,we're each in charge of our own,
like we have twins again, right?
We were each in charge. He hadhe took care of twin a, I took
care of twin B. That's kind ofhow it went. So we have that
(46:44):
now. And with nursing, I gothrough stages where I'm very,
very blessed to be fullystaffed. And then there's always
those, even if I'm going througha bad day, there's there's
always those nurses thatsurprise me and say, You know
what, you have a party or eventor a wedding you need to go to,
I'll come that day and take careof it. There are really
compassionate people in theindustry, those life saving
nurses who come to my home andtake care of us when we need to,
(47:07):
when we need it most. Butthere's a lot of days where
wears you down. And you know, Ilike to think, you know, we are
appreciative of all thecaregivers out there, but the
clients like myself just reallyneed some extra support to lean
on, whether it's a you knowcaregiver, you know for you,
what you do for your mom, allthose other people out there. I
(47:27):
think the it's not just your ownemotions, but it's like the
emotions of dealing with thescheduling and who's showing up
and are they canceling today,and some passive aggressive
nature, like, there's a lot thatgoes into it. It's really heavy
for me at times?
Natalie (47:40):
Yeah, I could totally see that. Yeah. Well, and let me
ask too, and we are pushing upagainst our time, so I want to
be mindful of that, but I don'treally care. You know, my
standard answer, but then Idon't care. So you've got, you
have, I think, do you have acombination? Well, you clearly
have a combination of paid andunpaid caregivers to provide
(48:01):
support, because she needsadditional support and nursing
meets that need part of it. Doyou have? Would you still say
that you have folks from thefrom the faith community, from
them, from your communityWhere's family is are there
folks that are coming inperiodically to help you guys
(48:23):
or, and I'm just, this is just,I don't know the answer to it,
and it's not to call anybodyout. But do you have other folks
that are also helping you guysto try to navigate this as as
well? Because you you're just,you're saying what we've said a
lot. Caregivers. Need caregiverssome days, sometimes you need a
caregiver for yourself.
Unknown (48:39):
Yeah. So we have the paid nurses who were set up with
if we kind of fall short and weneed some extra support. There's
a few. It's not so easy to findsomeone who's treatment
certified, and that's thedifference, yeah, right. I can't
leave my daughter with justanyone. It's a big weight to,
you know, to carry. It's notjust that physically her weight,
when you know the weight of allher supplies. And we want to go
(49:01):
travel to a family affair orsomething. Yeah, it's just we
can't leave her with anyone. SoI have a friend who used to come
at the beginning. She was moreavailable. She used to take care
of a trach van patient, and shewould come on a Wednesday when I
didn't have a nurse in themorning and help out. We do not
have any family members who aretrach van certified, and maybe
someday I'll find a sibling orniece, or, you know, someone who
(49:24):
is passionate about it, but wedon't really have medical
professionals in our home, inthat in our family, in that way,
who are eager to learn that wetry to keep my son not super
involved. I don't want him tofeel the responsibility of
having to save my daughter'slife. That could be really hard.
Yeah. So we help him, you know,if he wants to reconnect
something and we're around,we'll say, you want to run up
(49:45):
and do it, but we don't reallywant him to feel the burden
there. And then there's a fewfamily member a few community
members, one who works in thehospital where my daughter
sometimes gets admitted, whichis really, really nice, but it's
pretty lean on that in that end.
Because there's not many who aretrained, but I will say that we
have family members coming in tohelp with carpools and different
things like that. That's alsocare, yeah, which is really,
(50:08):
really helpful if we need it. Ifmy daughter would hypothetically
get admitted or do differentthings, we could call them and
they'd be
Natalie (50:16):
here, yeah? And I think that's that it sounds like
they're you're really managing ateam, and you're managing the
group and coordinating care foryour daughter, but also for the
children, for family, you'recoordinating life. There's a lot
of feels like a lot ofscheduling and and trying to
allowing for those surprises.
But you built a beautiful life.
(50:37):
I slowed you down, Rachel, and Ilove that about it, I think. And
I want to go into some of thequestions, because let's go into
sister questions. Are you ready?
I am super
JJ (50:46):
ready. So you said something my my question is you said that
your daughter is on lifesupport, basically, and that she
is medically fragile. And thattouched me. What does your what
does your future look like?
Rachel, what do you say for youall, a
Unknown (51:07):
good question. I'll tell you. My husband called up
someone who had who has atreatment child who's about 13.
It's their only child. And myhusband said, How do you cope?
And he said, I only take it oneday at a time. And I know it
sounds so simple, but it's true,like I could sit here planning
and thinking about what will be,but I really don't know. I mean,
(51:29):
maybe we have plans to hopefullyhave her come off a trick that
you know, the trach at somepoint, maybe not tomorrow, but
it's not out of the question.
The you know, her team isworking on that at some point,
so maybe that will lookdifferent. Honestly, I'm
thinking about like tomorrow andif I could get respite care at
some point to go, you know, on abreak at some point. You know,
(51:51):
that's kind of my near future.
What I'm thinking about, yeah,but I don't think about forever
and always what that looks like,because I Listen. I'll tell you
we we were blessed to doconstruction on our home, and we
customized all the plans twomonths after we started, or
really right as we broke ground,my daughter had her stroke.
(52:13):
Everyone sees our home. Thereare steps going off, there's a
lot of steps around. Andeveryone's like, what are you
going to do with this house? Isaid, if I was meant to
customize my home to mydaughter's needs. I think God
would have arranged it so thestroke happened, like, right
before, you know, when we didthe plans, like, that's no
fluke, right? That's crazy. Wehad the opportunity to customize
plans, and we just didn't. Sofor now, we're not we put a ramp
(52:34):
in the backyard, but I'm notthinking about it just yet.
She's only three and a halfagain. I don't think about,
like, 20 years ahead, but atsome point I may have to move
right. What does that look likefor my home that can't
necessarily accommodate mydaughter in the perfect way?
Yeah, it might not be. It mightbe a luxury to accommodate her
perfect way, but I might try, ifI can at some point. Yeah,
Natalie (52:56):
you know, I think there's a couple of things that
you had mentioned to us becausewe had asked you about, you
know, hey, what are things? AndI feel like we've hit on a lot
of them, but there was one thingthat you said that struck me,
and I think it's the opposite ofwhat I think most people would
say. And you said, Mypersonality is not to rely on
anyone, and that was the firstthing we started with, and
(53:18):
assume people will cancel. Itmight be pessimistic, just
Unknown (53:21):
on the rely, yeah, I love to show up.
Natalie (53:23):
Yes, well, and I think that's the point. And I think
the part that I liked is how youended it. So having low
expectation and being surprisedhas helped me Tell me a little
bit more about low expectationsand being surprised. So,
Unknown (53:35):
you know, I have family members when I tell them, Oh,
can you believe it? A nurse, youknow, canceled for today, maybe
for a good reason, maybe theywere sick, or whatever the case
may be, they're like, huffingand puffing on the phone, right?
They're upset for me, and Iappreciate their sincere, you
know, condolences for my nursenot coming home, and I'm dealing
with whatever I had going onthat day, right? But I'm like,
You know what? I always kind ofexpect it, not because I don't
(53:57):
rely on caregivers. It's just Icope. It's a coping mechanism. I
am totally fine. I mean, it'supsetting, but I could move on,
and that's just how it's been,right? I think I rely on friends
and family and those a bit more.
Maybe it's just the nature ofrelying on things related to my
daughter, because if a familymember says they're coming to
pick up your kids, should theycome to a party? I would be
(54:19):
upset, right? Or differentaspects related to that, and
family does show up. They saythey're coming, they'll be
there, but I think related tothe help and just the nature of
caregiving and the hired help,right? I'm thankful that I am
around. And on days when a nursecancels, I said, Okay, you know
what? I'll get to give mydaughter extra kisses today,
like I just respect it. MaybeI've been too busy that week,
(54:41):
and I get to, you know, focus onher, but it's hard. It's just I
don't want to sit there andwallow and have to change all my
plans because I assume thatsomeone was going to show up. So
I had. Do have a lot of people Ican rely on, but I, I don't
know, I err on the side ofcaution to protect myself, maybe
well, and
Natalie (54:58):
I think it's part protection. But it also allows
you to roll with it, and you'renot going to spend a lot of
energy on things that won'tserve you and and that's a good
and, you know, I think that. Ithink that is fine in it,
because you're right. Peoplecould sit there and be like,
why? It's why me? Why do I havethis? And you could say, well,
(55:19):
they're not going to show and Idon't hear you saying, well,
they're not going to show upanyway. It anyway. It's not
about that. It's really aboutlike life happens. My child had
a stroke at one and a half, sothings unexpected will happen,
and I'm going to be okay withit. I'm going to make sure that
I'm okay with it, because itwill happen. It's not that it
will never happen. And I thinkit's just a shift in the lens
(55:41):
of, how do I manage the the itgoes back to the chronic
unpredictability. There is a lotof unpredictability every day,
and so at least you know foryourself, you're able to say,
I'm going to be okay with this.
No matter what happens, good orbad, they show up. Great, they
don't show up. I'll deal withit, but I'm not going to melt
(56:04):
down.
Unknown (56:07):
Yes, and I think that's the difference, because I always
say this example, like my mothertaught us all how to clean,
like, if the clean lady doesn'tshow up, like, Okay, we still
know how to clean. And I know alot of people rely on cleaning
help, and I'm not the bestcleaner, but we don't melt if
our cleaning assistance doesn'tshow up. And I think I was
always brought up with thatmentality, right? Yeah, and then
COVID hit, right? How manypeople were drowning once COVID
(56:29):
hit? And different thing, peoplecouldn't show up to take care of
their services. I think that'smentality I like what you said,
which is, it's not with anger.
It's not with anger that I can'trely on anyone I know. I can
rely on certain people forcertain tasks, but life happens.
Someone might their car mightbreak down, whatever the reason
might be. I just that's theattitude that I
Natalie (56:47):
have, very lovely. It is care. It is say, lovey, yeah,
I have my last question ready. Iam This is always my last
question, Rachel, because I knowJJ had asked her questions. You
have any other questions? Good,I'm good. Okay, solid, just
making sure got it. All right.
Always want to be respectful ofmy elders. You're so welcome for
that. That was free. That was afreebie at the end. All right,
Rachel, what? And this is peopleare going to be like, I
(57:11):
definitely want to hear thisone. What is your favorite
guilty pleasure? What is the onething that you do just for you,
because you got a lot going on.
Girl, what is the thing that youdo for just you? That it's just
for you.
Unknown (57:28):
If I have the day, I will go out by myself to the
outlets and shop. I don't evenneed to buy anything. But like I
will, I just need the day. Itdoesn't happen so often. I did
it for my birthday in Septemberlast so I hope it doesn't wait
until next September, but in theinterim, there's bits of just
going outside and catching someGeorgia sun for a few minutes a
(57:48):
day. I know it's not, mightsound funny, but sitting down
and eating a proper meal duringthe day is a bit of self care,
because I'm working and Isometimes, and it's not always.
Most days, I do have coveragefor my daughter, but it's like
getting the time to take a havea proper meal. Yeah, and just
(58:09):
time for myself. Sometimes I dojust run out on different
errands. And if I'm by myselfand have the luxury to do so,
I'm not completely strapped athome, but if I have time to do
something that's like going tothe mall for an hour. Like
things that normal people can domaybe, or maybe not. People are
busy in life, right? But thoseare the things that just make me
feel like, okay, I could justperuse a store and be normal,
(58:31):
and, you know?
Natalie (58:32):
Yeah, I just, I agree with it gotcha. I totally agree
with that Trader Joe's was myfavorite. I would go to Trader
Joe's and they would just, and Iwould just peruse. That is
anything didn't have to buy. Ididn't even need anything, but I
went to Trader Joe's every dayand perused, and got to look at
all the other people, and peoplewatch and wonder, and just be
(58:56):
like I felt like everybody else,yeah, just like everybody else
and so, and so, and that's thebest part about everybody else,
is you have no clue what's goingon in their life. And so this
has been so wonderful, Rachel,
JJ (59:07):
it's such a beautiful story.
And thank you for sharing it.
Thank you for sharing with usfirst, because you said you'd
never share the full story, andit is beautiful,
Unknown (59:16):
and maybe the one and only, until my husband decides
to write another book.
JJ (59:20):
Yeah, no. But your attitude about everything is that's the
most beautiful part about it,and that it's not slowed you or
your family down. You havecreated a beautiful life,
regardless of the circumstances.
You just, you just, you justroll with it, and you've created
something
Natalie (59:34):
amazing. She's living an and life that's exactly
right. And this and this, I'mgoing to be this is hard, and
I'm going to get through it, andso I just, I think you're an
inspiration and just a blessing,and I'm grateful to know you so
guys. Thanks so much for joiningus and listening in and until we
confess again, we'll see younext time. Bye, bye. Well,
(59:59):
friends, that's. A wrap on thisweek's confession. Thanks so
much for listening in to thepodcast, but before you go,
please take a moment to leave usa review and tell your friends
about the confession show. Don'tforget visit our website to sign
up for our newsletter, as wellas connect with us on Facebook,
Instagram, LinkedIn, Pinterestand Twitter. You'll also find
(01:00:21):
the video recording of all ofour episodes on the confessions
website and our YouTube Channel.
We'll see you next Tuesday whenwe come together to confess
again. Till then, take care ofyou. Okay, let's talk
disclaimers. We are not medicalprofessionals and are not
providing any medical advice. Ifyou have medical questions, we
(01:00:42):
recommend that you talk with amedical professional of your
choice. As always, my sistersand I at confessions of our
reluctant caregiver have takencare in selecting the speakers,
but the opinions of our speakersare theirs alone. The views and
opinions stated in this show aresolely those of the contributors
and not necessarily those of ourdistributors or hosting company.
(01:01:06):
This podcast is copyrighted andno part can be reproduced
without the express writtenconsent of the sisterhood of
care LLC. Thank you forlistening to The Confessions of
a reluctant caregiver podcast.
You.
Hey guys, it's your favorite sisters with the
(00:02):
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate beinspired. Leave with helpful
tips and resources and, ofcourse, laugh. Now let's jump
right in to today's guestconfession. You know, I think
you get nervous every time wecome on when Andy counts us
(00:27):
down. Because I was actuallythinking about going, Jay, Jay,
Jay, Jay, Jay, Jay, Jay, Jay.
JJ (00:36):
It is, you know, every all my life, I actually think I've
been nervous like, I'm like,What is Natalie going to say?
That's exactly what I wasthinking, that you were
thinking, yeah, because I'mlike, I've always been
responsible, and I'm alwayslike, what? What is going to
come out of her mouth? I justand that's why I never wanted to
take, don't tell the story. Butwhat why I never wanted to take
classes with you? We were incollege. I was like, I will not
(00:57):
be associated with was itbecause I stuck my finger in
your potatoes at lunch? That isexactly right, and that is why
we are admitting I never wantedto be associated with her.
Natalie (01:05):
I totally did. She she was a senior, and I was a
freshman. We're going to take anextra second here, people, I
know you're listening forcaregiving, but we're going to
take this extra second. JJ and Iwent to school Hollins. It was
Hollins college at the time.
We'll get past the fact thatthey switched over to university
in a bigger diploma. But it wasfine. Still works. And she was a
senior, clearly she's older thanme, Yeah, clearly worked that
right in and I was a freshman,yeah. So even though we're all
(01:28):
two years apart, we are threeyears in school, yeah, and Emily
and I are two years in schooland age and and so I was JJ, was
with all of her friends, and shedidn't want let me sit at the
senior table? Yeah. And she waslike, go away. You're annoying.
And I was like, No. And then shegot and then she was like, go
away. And then her friend, Susantubes. Susan tubes, if you're
(01:48):
listening this podcast, you knowthat you know the story. And
then I leaned over and stuck myfinger in your mashed potatoes
and ate them.
JJ (01:58):
Oh, my true story. Rachel, kids, you have
Natalie (02:00):
stories, Rachel, instead of understanding your
children, you go sister
Unknown (02:04):
a year older than me, and we're 11 months apart. We're
Irish twins, and we arecompletely different. We are
night and day. I mean, we lookdifferent. We she was more of a
tomboy. I was the girly girl,and people would be shocked when
they were here. We were sisters,so much so we kind of ignored
each other in school, you know,like, wow, you're just sticking
your finger in the mashedpotato, mashed potatoes. But it
(02:26):
was a very small school, and thejoke was like, did you even say
hi to each other in the hallway?
No, I
JJ (02:31):
don't know, absolutely not.
I mean, we sure, no, I didn'twant to. But yeah, no,
Natalie (02:36):
no, okay, well, okay, Rachel already jumped in, but I
want people to know aboutRachel? Rachel is the newest
sister, yes, and you are goingto love this story, because it's
super unique. It is a differenttype of caregiving experience,
and I'm excited to have Rachelto share about it. So Jade,
let's talk about my
Unknown (02:53):
heart. I'm excited to have Rachel here with us. Okay,
keep going. Okay
JJ (02:58):
today, guys, we have with us, Rachel Shapiro and she, she
lives in Atlanta, Georgia andHotlanta with her husband and
five kids, right there. She's asaint litter kids. This what she
says, we run a busy household,really like you run like a team.
I love
Natalie (03:15):
default team. All you need is that serious man,
because somebody's going out.
She
JJ (03:19):
says they have seen and overcome challenges almost
losing a child, and now they'renavigating the world of special
needs and being the caregiver toa daughter, a miracle that they
were told would not survive.
Today we are going to unpackhere on the show Natalie, grief,
loss, what could have been andadjusting to a new norm, and I
think that that new normincludes building a really full
(03:43):
life around caregiving.
Natalie (03:47):
Oh yes, because care, in this case, started very
young, and so I'm not going togive it away, because we're
going to let Rachel tell herstory, but we are so excited to
have you on and I hope you'rewatching on YouTube, because
she's currently in grass thatneeds to be cut. That is our
standing joke. We were laughingabout what the background is
going to be. So if you are notwatching on our YouTube channel,
so you can see the video,because Rachel's beautiful, but
(04:09):
she's also got blades of grassaround her, and that makes me
happy. So very fresh, verysummery. I'm digging it, Rachel.
Thanks for being here.
Unknown (04:18):
No problem. I'm really excited to be here. This is the
first time I am sharing my storyin a public forum. So some
people know it just by beingpart of our lives, but I have
not shared a podcast. I havenot, you know, I've shared
glimpses, you know, bits andpieces on Facebook and a public
forum, but this is, like, thefirst time it's going live.
Natalie (04:37):
I love it, and you're gonna be wonderful, and I think
you're gonna bless so manypeople. Your story is going to
resonate with folks. And this isa different, again, a different
type of care. So let's startfrom the beginning. Let's start
give some folks some frame ofreference about because you
already said you have your Irishtwin. You're You're 11 months
apart, which I love. We've hadsome we've had a couple of Irish
(04:58):
twins, I know like it's a. Feltlike I'm like, I love that
phrase too. That's like, I likethat too. And so, um, tell us
about growing up and get us towhere, and you met your husband
and all that good stuff. Solet's bring this up to speed.
Unknown (05:13):
Okay, great. So, um, I am second to oldest of one of
eight children. There's sixgirls and two boys. Wow,
interesting. Because when I seeyou guys chatting like this, we
all get along really well, butyou guys have something, you
know, pretty unique there. Ilove that. Oh, we, you know, we
have a sisters chat, you know,that we all chat about. So it's
(05:34):
fun all the things that we weunderstand each other in a
different way, you know, kind oflike you do. But, yeah, I grew
up in a busy household. There's17 years between oldest and
youngest. We call it like theolder four and the younger four.
Oh, I still have, you know,siblings in the home, and
they're growing up entirelydifferent than I did, yeah, so
that's really fun. We are, youknow, connected. Some of us
(05:56):
don't all live next to eachother, but we try to, try to
stay in touch with one another.
Now, you're from New York,right? I am from New York. I've
tried to hide that, but nineyears living down south, people
can still pick that up.
Natalie (06:08):
Do not gain the southern accent. Girl, you have
just got to say us more morefrequent.
Unknown (06:13):
I could try to say y'all a bit more naturally. It
used to be y'all, now y'all. Butmy grandfather is from Augusta,
Georgia, so I say like, I dohave southern roots. Okay, so,
you know, not entirely anoutsider here. So, yeah, so grew
up in New York, met my husband.
We went overseas for a fewyears, and then moved back to
(06:37):
America and decided to plantroots in Atlanta, Georgia. How
old?
Natalie (06:42):
Where were you guys when you met? Because I'm like
an Interrupting cow for a sec.
Yeah, we,
Unknown (06:48):
I think we were about I was 20. He might have been 22
married. Everything was a prettyquick courtship marriage. You
know, all that stuff happenedpretty quickly. So it was a good
choice, though I was datingquite a bit, and, you know,
happy where I landed. So weeventually moved down south and
(07:08):
planted roots here, which, youknow, never thinking as we get
to the later part of the story,that we're without family here.
You know, living in a beautifulcommunity in Atlanta, Georgia,
but at the time, living yourfamily wasn't really a big part
of what we were looking for.
Yeah, and even now, it's okay,but kind of coming into the
story later on, it would behelpful to live in your family.
I could see that. Yeah, yes. Sowe moved to Atlanta, Georgia,
(07:33):
nine years ago. We had one childat the time. Actually, I had a
two year old, and while we wereliving abroad, we actually
started struggling with primewith secondary infertility,
which is kind of the first partof my story. And came to
Atlanta, started going throughIVF all the treatments, and
eventually, two years later, Ihad identical twin boys. So my
(07:55):
two, I have two sisters who havetheir own set of Irish twins,
which has its own set ofstruggles. You know, you're
pregnant while you're havinganother child. Yep, I have the
two twin, the true twins, but insome ways, I think they had it
harder, because it's like you'rejuggling different stages. Yeah,
we did everything at once. Sothank God I was blessed with
there's a four year gap betweenmy oldest son and my identical
(08:16):
twin boys. Okay, very grateful.
And while we were doing this, wewere planting roots, getting
really involved in the Atlantacommunity. My husband's a rabbi,
and we were here tasked being inAtlanta, which is building
connections with anyone inAtlanta. And it was, it's real.
It still is a beautifulcommunity and journey, and we're
(08:37):
really grateful for all of that.
So that's how it takes us a bitforward when we were ready to
kind of have another child. Iwent back for another IVF
transfer, and, you know, thankGod, became pregnant with my
first baby girl.
Natalie (08:54):
And so you had had all boys to this point. Yes, yeah,
so you'd had all boys. Now, letme ask you this, because you're
working too Correct? Yes. Okay,so I think that's important,
because I'm going to every nowand then interrupt you and be
like, Yeah, you're working, andtell folks sort of your
background on what you do forwork, because that's not like,
it's easy peasy,
Unknown (09:13):
yeah. So I could sidebar, it's funny, because my
husband just ran into someone,and they know I'm really
involved in the community work,and they know that I have a
special needs child at home. AndI just came back from a work
trip, and my husband was saying,Oh, my wife is away. They said,
doing what? And they're like,he's like, you know, she works
full time. And they're like, No,I thought she was a primary
caregiver, like as her solerole, which is very
(09:35):
understandable, but we'll getinto it. What I do now? Why I
hold on to my job, and I thinkas long as I can, I love working
in any case. So what I currentlydo now, I've been in marketing
my entire career. I started outin FinTech, and then went into
risk management and supply chaintech, and I always wanted to go
into healthcare, but it justnever happened for me. And then
(09:57):
I was recruited by the company Iwork for now, from. It's a home
care technology company, and Irun the marketing for them.
Yeah. So there's two softwaresoftware platforms. One is care
time, which is a home careagency management platform. We
do billing and take care of allthe hot Home Care ops. And then
ally, which is another similarplatform, but for those working
in the nurse registry communitywith 1099 caregivers. So I'm
(10:20):
really busy, and I joined thatindustry. I'll say this bit for
later, kind of how it all cametogether. Yeah, what happens
next? But I do work from home,which is a big blessing, but
I've, you know, been working allthis time,
JJ (10:36):
yeah, so let me actually you decided you wanted that fourth
child. You get pregnant with thefourth child, and it's a girl,
it's a girl. But Did you alwaysknow you wanted a big family?
You come from a big family whereyou're like, yes, you and your
husband both, we want 10
Unknown (10:49):
kids. I think on the first day with my husband, he
said, like, I want 10 kids, andI'm like, that's fine, but like,
can we take it, like, one at atime? And I think you shared
this, and he ended up writing abook about our infertility
journeys and sharing about thatpublicly, speaking across the
world, actually, in manydifferent forums. So it's just
interesting how that came intoplay. I say, I take it one at a
(11:10):
time, but I had twins, soeveryone laughs at me. But even
till this day, I say, you know,we'll see what happens. I feel
very blessed, and we'll see
Natalie (11:19):
I love that. So, so you go and you you get pregnant, and
you have your little girl, andlet's keep going.
Unknown (11:29):
Yeah, so I had my girl, and there were some
complications throughout thepregnancy and while giving
birth, but kind of fast forwarda year and a half a bit before
her second birthday, aftermeeting most of her milestones,
I'm really doing very well. Abit before her second birthday,
she seemingly fell. I wassleeping late that day. Came
(11:53):
down. She fell. But kids fallall the time. I twin boys again.
Remember that, oh yeah, shefell. And was acting weird. Her
eyes were doing weird things.
She didn't really want to eat,and we put her to bed, and she
was just acting weird. A parentknows when something's off, and
we actually had a doctor at ourhome at that time. He's like,
you really should take her tothe hospital. And we said, yeah,
(12:15):
like, we know. So we took her tothe hospital, and they did all
the scans, all the things, andthey said we're treating her for
concussion, and at this point, Iknew nothing about anything
medical, like, you know, youtrust doctors. And again, maybe
that was the right call at thatpoint. That's okay, but I didn't
even have the awareness to askor pry into different things,
because I didn't really knowmuch, right? But they kept her
(12:36):
there for two days for aconcussion, and actually, thank
God I was working, because Iremember working at it might
have been a Sunday, which isalso, I do tend to work a lot,
but it might have been like 10or 11pm at the hospital on a
Sunday night or Monday night. Iforgot if it was a work day, and
I was just really tired. Andsaid, You know what, I'm going
(12:56):
to spend the night here. Welived five minutes from the
hospital. I said, I could havegone home, but I actually
decided to put my laptop. To putmy laptop away and sleep on the
bed in that room. And in middleof that night, that night, she
CO, you know, wasn't breathingwell, people ran in. They
thought she was having aseizure, and I was watching my
child seemingly have a seizure.
(13:21):
I didn't know anything. Ithappened again an hour later,
and it was a, I guess, coded intheir language. They kicked me
out of the room. I had again.
Now I know so much more. I'vebeen in hospitals for months,
you know? I'll share what thatis, but at this time, I'm like,
What's going on here? This iswhat you see in the movie.
They're like, get the mother outhere. 10 people run into the
room and they they don't reallyknow what's going on, because
her stats are just dropping. Soin retrospect, and what I found
(13:42):
out later, you know how theytell people, when you see
people, you know, older peoplehaving a stroke, they do, like,
a weird thing with their mouthand like, Twitch, ache. My
daughter was doing that in frontof my eyes. I didn't know at the
time that it was a stroke. Wefound out later, but she was
stroking. They thought it was aseizure. Again, not blaming
anyone. But I didn't even knowthat. I didn't even know a child
could have a stroke at thispoint, like I knew nothing. So
(14:03):
you know, throughout this wholenight, we didn't keep our cell
phones on back in these days,because life was simple. Life
was good. And I tried calling myhusband like all the time, he's
not answering. I'm panicking,pacing up and down the hallways.
And it was really bad. It wasreally, really bad. We didn't
even know what was going on atthat point. Just to pause here,
(14:25):
you know, I finally got hold ofmy husband and I said, you know,
we, throughout in our life,we've said, like, you know, it's
bad. I'm like, you know how allthose times you said things were
bad, those were really not likenow it's really bad, like, come
to the hospital immediately. Sowe found arrangements for my
daughter, I mean, for my otherchildren at home, rushed over to
the hospital, and we wentthrough our day. They didn't
(14:49):
know yet she had her stroke, somuch so that my husband was
teaching a class at 730 thatnight, and our doctor calls and
says. Get to the hospital now,and we just still didn't know
what was going on, like we weregoing on with seemingly our
regular day, like my husband wasteaching a class, and we get to
the hospital, our close friendsmeet us there, and they say she
(15:09):
had a stroke. It's devastating.
Stroke again two days later, twodays prior, she was I pictures
of her that Friday holding ontoa ball in therapy with the
biggest smile, and they don'tknow what happened. Wow. They
basically tell us she is notgoing to make it. And again, for
(15:29):
those who who have been throughthese sort of scenarios, they
like to prepare you for theworst, but no one was giving us
any glimpse of hope. It was areally, really bad stroke, and
they all said like she's goingto succumb to her the pressure
in her head at some point, like,it just, it's going to happen.
Natalie (15:45):
I'm going to I'm going to take a pause here, because
I'm going to hit that. We've hitthat little mark, and I want to
take a break for just a second,because I think that's the right
spot that people have not givenyou. There's no hope. And I
can't even imagine that asparents of a one and a half year
old like not understanding solet's take a break right here.
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JJ (16:54):
All right, everybody, we are back here with Rachel Sapiro and
her daughter has had what theyfound out to be a stroke, and
they she's basically been toldthat she's not going to survive.
And Rachel, she's in thehospital. You guys have been
given this news. She's in thehospital for five months,
though. Tell us when it changes,because you all also get
(17:17):
training, because now they'resaying, Okay, you have a child
with special needs. Tell usabout that five months and what
pivots in there.
Unknown (17:24):
Yeah, so it was a long journey. From the moment they
told us she had a stroke, so shewas intubated automatically, and
we kept hoping that she wouldget extubated and right taking
home a child on life support isdramatically different than
taking home a child not on lifesupport, and we were real. You
talked about being a reluctantcaregiver. We were really
reluctant with the the trach,the vent. We were pushing it
(17:47):
off, not just because we wereclinging out to hope, but that
meant so many things for ourfamily, right? Like we wanted
her home, but what did that looklike?
Natalie (17:56):
Well, and I want to interrupt for a second, she's
going home on a trach, and Iwould feel super intimidated by
that. And you're right, you'vegot other baby nuggets in the
house. You've got three otherkids that are in the house, and
you're having to navigate. I canimagine that being scary for the
boys, even if they'd come visither, right? Yeah, go ahead.
Unknown (18:18):
Yeah. So there's different aspects that not to
jump all over the place, butwhen they brought in a trach for
the first time to the room, justto show me what it looked like,
I was like, I can't even look atthat. Like, forget about
touching it. Like I just can'tand that was the emotional part
of me, like, I can't even thinkabout learning how to do this
for my child, because it was sooverwhelming. Now, probably most
(18:38):
of your listeners are goingwatcher. You know, whoever's
watching this will think thatthis is crazy, but we forgot the
part where we had about sixweeks, three weeks where they
didn't know if she was going tosurvive. One day a nurse said,
Oh, you're still here. I didn'teven think you were going to
survive, but it means you'restill here. And that was the
first part of realizing, like wesurvived, because none of the
doctors really told us that,which is, you know, it's okay,
(19:01):
they had to prepare us for theworst. So thank God she
survived, but we were still inso much of a limbo till she
ended up going into rehab forher last, you know, portion of
the stay there. But I decided atthat point, along with my
husband, that we wereexperiencing so much loss and we
wanted to rebuild. We decided togo for another embryo transfer
(19:22):
during this period,
Natalie (19:23):
right in the middle, yes, in the middle of all this
Unknown (19:27):
stroke was in June. I think I went for my transfer in
August. And I talk about this,the fertility clinic was right
next to the hospital, and Iwent, my day was spent in, you
know, the mornings or whatever,going in and out of those
hospital, the car garages. So Iwould go, I say, like I had an
analogy, like, up and down. Igo, like, to visit my daughter,
(19:49):
who is hopefully on the mend,and then up another escalate,
you know, up another car ramp.
I'm trying to build new a newfuture for ourselves.
JJ (19:58):
How old are you at? That time. I didn't mean to interrupt
you. How old are what's thefamily dynamic there? How old
are you and how old is everybodyelse? The littles
Unknown (20:06):
at that time, my my daughter was really just a month
shy of her second birthday. Um,my twins were probably almost
six, and my older son was, youknow, nine. We knew we wanted
(20:28):
more children. And I know thereare a lot of people out there
who may have special needschildren. There is something
about having a child after onethat has special needs. It gives
you a lot of positive energy,you know, just comfort. There is
a lot to that, yeah, but we werereally in the thick of it, yeah.
And then what happens next? Justto kind of answer your question
about the training, I wasthrowing up in between the
(20:50):
training, falling asleep. Imean, that was a lot to take
home a child with life support,with a trach event. You need to
really go through rigoroustraining, and I'm thankful for
it, because we're we know whatwe're doing. We really, she's a
bit more stable now, but we'vehad to save my child, you know,
my daughter's life together. So,you know, we went through that.
(21:12):
Thank God we had I was pregnantwhen we brought her home. We
brought her home when I was afew months pregnant after a five
month stay. And what that meantfor for the siblings was we were
just going to continue asnormal, right? If anything
needed to be different, we letthem know. But I think for my
older boys, they just wanted toknow that Mommy and Daddy were
(21:33):
sleeping at home at night. Thatwas their biggest we took time
sleeping in the hospital. Therewas a lot of there was a lot of
concern around that, when everysingle night where were mommy
and daddy, but once we were allhome, it's like they almost
didn't care as much that mytheir sister looked a bit
different. Obviously, I'm surethere was a level of grief that
came along with it, because myolder son used to play along
with my daughter, but we wereall home, they just wanted us to
(21:56):
be home, and for them, thatmeant stability. So you probably
think we slowed down in terms ofour community, work and hosting
and everything, I kid you not. Idon't know how we had the
strength to do so, but it gaveus the strength to just
continue, right? We had thischild who needs special care. We
had to continue doing what weloved despite it all, and we
(22:18):
really did nothing stops us. Imean, we have a monitor that we
bring up and downstairs. If weneed to watch her, I run up and
down. It's just a full, fulllife. And thank God gave birth
to my baby girl. She just turneda year. So just bring everything
full circle. We'll dive intomore of the, you know, caregiver
aspects. But that's kind ofwhere we are today,
Natalie (22:41):
isn't that so there's, I mean, I know that our
listeners are probably havelike, 1000 questions, because I
know I do, like, it's, you know,how do you make that decision?
Because we've had other folks,like, we just had Jess, was I
love Jess, plus the mess, yes.
Jess chose to have a son, morechildren after just her son,
Jessica pate. Did I think aboutthat? And I think most people
(23:05):
would think, Oh my gosh, this isso hard. How can you have more
children? And here's the otherthing is that if you when you
see Rachel on the YouTube, oryou see her thing, Rachel looks
like she's 20 now, she has beengiven the gift and blessed with
youth. And so you would think,how is this sweet young lady?
Unknown (23:28):
But I'll take it. Yeah,
Natalie (23:30):
girl, we all take it.
We will always take it. But it'slike, how do you have the
energy? And I hear you justsaying it was so important to re
establish a new normal, andmaking it normal, like truly
having normalcy for your foryour boys, for the kids, and
incorporating that yes, we canhave we do not have. Yes, our
(23:53):
life is different, but it canalso still be good and full. I
love how you said we're going tohave a full life. It was so
important for you and your
Unknown (24:05):
husband, yeah, and it's interesting, because I don't
want anyone to think I wasn'ttaking any help. We had meal
trains for months. I mean,really we there was a lot of
support that we needed fromfamily and friends to get
through this, um, picking up mykids from school and all those
different aspects. But once wewere all home, right? The
stability just meant a lot. Itmeant a lot to everyone. So I
(24:25):
think for myself, for myhusband, and for my family,
losing ourselves and having togive up the things that we love
and our family looking sodifferent, right? In terms of us
always having an open household,if my boys would have felt like
we are not doing that, we'restopping everything now, that
would have been a dramatic shiftfor them, and this has kind of
been our mentality. You know,it's like when life gives you
(24:47):
lemons, you just make lemonade.
I We don't say that often thehome, but as I'm thinking about
that now, that's kind of what wehave done. Yeah, right. Maybe
family vacations are not us allgoing together anymore, but my
husband takes the boys to makesure. They get that sort of
excursions that they can right?
I can't go with them andeverything now my daughter is
it's hard to travel with her,for sure, not. I don't want to
(25:10):
take her on a plane right now,and things look different. But
we make sure that our boys stillfeel like the older ones, at
least, because they're the onesthat are mostly impacted, that
they feel like we are. They'reliving an everyday regular life,
even though it might lookdifferent than their friends in
some ways, they're a bit morespoiled in other ways than their
friends. And I want them to knowthat they still get vacations,
(25:32):
they still get to go away, theystill get to do that so and they
love hosting and, you know,having that community
involvement, so it would havebeen too much of a shift for all
of us. I remember when I spoketo one person, when they when I
found out that my daughter wasgoing to be trach, you know,
vent and, you know, in that typeof medical, fragile situation, I
(25:52):
spoke to one person, and shetexted me back. I gave up my
life. I this was while mydaughter was in the hospital.
She said, I gave up my life. Igave up my job, I gave up
everything, and I turned to myhusband, fried, and I said, this
is horrific, like i This can'tbe us, and we somehow just made
a decision, not necessarilybecause of what this person
said, but that that won't be us.
This person, this was yearslater. I don't want to use the
(26:13):
word bitter, because you'retaking care of her child, but
it's hard when you lose yourselfbecause of different things that
happen to you. You're in controlof your own destiny, right?
Yeah, and I think it's made mestronger for it, knowing that we
can do all the things we love,despite how I have this, you
know, new aspect of caregivingin my life. And, you know, could
talk more about that. Wow,
Natalie (26:37):
I know I told you. She was like, it's not slowing me
down. Feel sleepy right nowbecause, and not sleepy because
I'm bored. I mean, like, I amexhausted for you, because you
work your your you and yourhusband are actively engaged in
the community, and I'm assuming,honestly, the whole family is,
like, at some level, the I'msure the boys are as well. I
like, how we could we've got aseparation of age, like, you got
(26:59):
the boys because they're older,and then the girls and and
you're doing all the things, andyou know, I think it's
important. We've had otherguests who come on and they talk
about, like Jessica Patay talksabout she and her husband have
always split vacations becausetheir son can't go, and it's
very hard, and it is an acceptedthing. And the first time they
(27:22):
have gone out, they went on anextended vacation, because he's
older now, and they went on anextended vacation for the two of
them. But that was very nervous.
I remember she was saying, we'regetting ready to go on that it's
the first time we're doing that.
And I think, let's talk. Let'sgo into relationship. Let's go
into yours and your husband'srelationship. And I mean, like,
I know that something that wasreally important to you is that
(27:44):
you and your husband don't loseyour relationship because of
care and that, and I think thatis, this is not just because you
have a special needs child.
You've got a literary kids. Ilove saying a litter. You've got
five kids, even if none of themwere special, even if you didn't
have a special needs child, thatis for so many parents that I
see, because I don't have kids,but I've seen so many parents
(28:07):
give up so much of themselvesand their their self themselves,
what their things are, thingsthat they enjoy, to sacrifice.
And I hate the word sacrifice,because I don't think it should
be a sacrifice. I think youshould be able to how can you
have but how can both things betrue? But how do you and then
their marriage is affected bythat? And then, I think it's why
(28:27):
a lot of divorces come afterkids go to college or go or go
on at move out of the home. Whatis your all's what is, how have
you and your husband been ableto maintain let's start with
your also relationship?
Unknown (28:42):
Yeah, it's a good question. I will say that it is
really nice that he's not out ofthe house, you know, at a nine
to five job outside the home,because he's around more. So
even if we are not necessarilyspending time right on working,
maybe we see, you know, we sayhi, we pass the monitor one
another, if, if a nurse doesn'tshow up, but we see each other a
(29:02):
lot, which I know some couplesare not fortunate. You know,
they're all running around doingwhat they need to do. I would
love to say that there's asecret. And I would love to say
that we are able to go on datenights or go on vacation
together, but we cannot becauseof, you know, lack of care. I
will say the fact that we areboth building something
together. Going to we'll host anevent together. We are
(29:24):
contributing together in thatnonprofit community sense. We
are building a family together,but we're also building
something else, and I think thatgives us both a commonality and
a goal. You know, we'll createan event. Say, what do you think
of it? You know, we also have ateam who works with us, but I'm
kind of the co founder, so, youknow, he relies on me to kind of
keep things in balance. So it'sreally nice in that regard. So I
(29:48):
think we're building twodifferent things. And then, as
it relates to the caregiving,when it does come to the tough
things of it's only happened afew times, but I need to save my
daughter's life together. It'slike. Wow, we're doing something
like, wow, together. Like, we'renot doing all the frivolous
things, you know, in life, butthis is really meaningful and
impactful now, in terms of,like, the nitty gritty of the
(30:11):
stress, right? Not getting intothe relationship that can be
really, really tough. And at thebeginning, my husband and I were
processing the loss, right? Wespeak about, you know, you
touched on the grief and loss.
Yeah, I was mourning the fact,and I say this candidly, when my
daughter had her stroke, I hadbought such cute we live in
Georgia. I bought such cuteGeorgia peach swimsuits for my
daughter that summer. They werewaiting at home. And I was
(30:33):
mourning the fact, two monthslater that she didn't get to
wear that those that season,even, even if she had a
miraculous cure. The next day,she didn't get to wear those
like, I had to try to returnthem, or I couldn't look at
them, right? She had a wholecute, you know, section of
clothing to wear that season,and she couldn't wear that. So I
(30:53):
was mourning while my husbandwas like, going through a
different sense of grief. Sothat's something that we had to
address. My husband speaks aboutthis when he discusses a
challenge of, like, fertility,right? Couples process things so
differently and just, how do wemaintain the relationship? I
think it's the communication of,how are you processing this? It
might be really hard for me thata nurse didn't show up that day,
(31:14):
but hypothetically for myhusband, he might say, Okay,
let's just go with the flow. Youknow, we'll do what we need to
do, because he might be morematter of fact about it. So it's
just the communication aspect,like one thing that's hard or a
struggle for me might notnecessarily be a struggle for
him, yeah, and I think that'sjust what helps us kind of stay
true to ourselves and ourrelationship, because we'll
(31:36):
continue to have ups and downsin this journey of caregiving,
and we need to prioritizeourselves. And you know,
hopefully we'll get away soonworking on that, but I do
realize we just, we try to findtime in the home. We're again an
evening out, even though it'snot like some large vacation,
Natalie (31:56):
yeah, but that's, I think that's important, and
staying true to yourrelationship, and I appreciate
you saying it's not like thesecret sauce, because honestly,
if there was a secret sauce, youjust write a book about it and
go on the Oprah tour. Girl, beselling it. You just be selling
it. I mean, you're a marketingguru, so like, let's we'd just
be selling it. Yeah, we're goingto take a break because they
don't want to come back and wantto talk about the boys, and
(32:17):
we'll be right back
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JJ (33:08):
All right, everybody, we are back here with Rachel Shapiro,
and we're talking aboutcaregiving and how it impacts
families. And we've talked aboutrelationships with a spouse she
has three older boys than her,than her daughter, and we want
to talk about them andrelationship with the boys and
you also have that youngerdaughter. How has I guess my
(33:31):
word would be, how have youadjusted them to your new norm?
Like, what is the new norm? Howhas this impacted them and your
relationship with them?
Unknown (33:43):
Good question. Yeah, it's a good question. So for
better or worse, this wholestage really went over my twins
head. You know, everyone kepttelling me, do you think your
children need to speak tosomeone? And I was very open to
it, right? I really am. Butseemingly, like the twins were,
I want to say, four at the time,and they just cared about who
(34:05):
was feeding them, who wasclothing them. Were they playing
with that day? They didn'treally understand what was
happening, and it kind of wentover their head. So I don't know
that they didn't for they forgotwhat the norm was before that.
But now again, they're still dayto day. Is they're going to
school, they're playing withtheir friends, they're getting
their presents, they're gettingtheir presents. They're getting
their food. Like, yes, they seeaspects of our lives, and we
(34:26):
have a nurse in the home. But itmight sound crazy, but it's not
really impacting them in the waythat a four a six year old,
they're almost seven. Now, whatthey really care about my older
son, he just cares about memaking home cooked dinners for
him, like, I'm telling you, he'ssuch a foodie, and all three of
my boys, actually, when Mother'sDay comes around, it's thank you
(34:46):
for making me dinner. So maybethat's the trauma they
experienced from all those mealtrains and all the delicious
food other people made for us,yes, but they're so
appreciative. Like, when I makethem good dinners, you know how
important is for kids when youcome home, you know, at the end
of a long day, I. Um, they justwant that home cooked meal. So I
think for them, like, if any ofthat was out of the norm and
(35:06):
they felt like we were runningto the hospital, I try to
communicate with them if someoneif we have an appointment that's
in the hospital, if there's achance we might be running late,
or if they might have someoneelse pick them up, because
that's important to them. Theydon't want to be surprised. But
other than those aspects ofagain, getting to school, coming
home, who's babysitting them,they they feel that. They sense
(35:28):
it. But we take care of mydaughter. They're not involved
in the care as much, and theytrust that, you know, the kids
trust us that we're taking careof their sister well. So
Natalie (35:40):
I don't know. I know, but I hear actually. I hear you
saying things, Rachel, thatactually, so especially with
them being young and developingbrains, we know brains that as
especially as they're developingchronic predictability, that's
what predictability routine, andthat's what I hear you saying
that your boys thrive off of andask from you in their own way,
(36:06):
not verbally, probably, butreally, but you know, and you're
there, you're there meeting thatneed. And it's not tangible
things. It is time spent with orI need to know who's going to
pick me up so that I don't haveto be scared that, you know, all
of a sudden, it's really aboutsaying everything's okay, so,
you know. And you
Unknown (36:27):
did. We did if we came home, if we were walking around
like and that's what happened,actually, I forgot to mention
this. When we found out that mydaughter was likely not going to
or they told us might, we had toexplain to my son. And we did
allow my son to come to thehospital, they made an exception
for him to be allowed into theNICU to potentially say goodbye,
if that would be the case,right? We had to think about all
(36:48):
those things, and we were cryinga lot, rightfully so, but they
met and made him sad once weonce, we stopped crying. I don't
know when that happened, but Iimmediately saw a change in him.
He was reflecting what we did.
And I think that's what happensnow. If we were walking around
nervous, if something were goingon, he would sense that. And I
think parents can infuseconfidence in their children
(37:09):
despite what is going on. Andsorry to cut you off, but that
was an important point that Imissed earlier words,
Natalie (37:17):
though, Rachel, if they reflect, I think that is
probably the biggest takeaway,is how, and it's hard for the
adults, if you think about itlike I can only imagine, and
really not even, but the theemotions, the range of emotions
that you're going through, andyou are also pregnant at the
same time, so you get all theextra hormones, you're Welcome
(37:38):
and but all of that andthinking, okay, the little
people are looking up to me, andthey're looking for direction
that everything is safe andsecure, yeah, and that is
exactly what they want. And thatcan be hard, and I think about
it like for when, when Jason wassick, or whenever we have things
(37:59):
that are going on with mom, likeour mom can be like,
everything's going fine, andthen it is full on hot mess, and
911, and then we're back again.
So it is this ebb and flow thatchildren have to have built
resilience on, and they learnthat from their parents.
JJ (38:16):
So I want to talk about you, Rachel. Are you okay with that?
Let's talk about Rachel. So Iknow, let's talk about Rachel.
So I know you're a person offaith. And I would, sometimes I
would say to myself, we've askedpeople, do you say, why God? Or
do you say, Yep, this is I'm onthis path, and there's a reason.
What is your attitude towardsthis? And what have you kind of
(38:38):
done, your conversation withGod? Your conversation? Yeah, I
have conversations all the time.
Unknown (38:42):
Really great question.
So I was just telling the storyover to someone else yesterday,
but it's something that stickswith me. And I know not everyone
reacts like this, but as we werein the hospital, found out that
she likely was not going to makeit, my husband and I were
crying. It was obviously a hotmess. I remember saying, How can
I even be upset at God, when Ihave three other healthy
(39:05):
children and a wonderful spouse?
And I remember thinking in thatmoment, I have friends who are
not married, my friends who aremaybe not married to nice men. I
have friends who don't have anychildren, and I have three. And,
you know, I have a job in acareer and a community. And in
that moment, I was like, howcould I complain to the person
who's given me all the greatstuff when I have all that stuff
(39:25):
and be upset for the oneseemingly bad thing? Now, I do
understand, at a higher level,this happened for a reason. I
will never know exactly why Ikind of get to be I think about
things in a bit of a morbidsense. But when this happened,
we were supposed to have a grandvacation to a couple of
countries. That summer supposedto be a big family vacation, and
we had to cancel that. But Isaid, You know what? I'm sure
(39:47):
she saved our life in some way.
It could be a bad accident wassupposed to happen, and this is
how I think I know not everyonedoes, but I have to convince
myself that it is for a goodreason. And the only way I could
think about it being a good fora good reason is she took the
hit for all of us. Likesomething might have potentially
bad happened, and she just, shesaved us all from going on this
vacation. I know that might notbe the reason, but there's some
(40:07):
greater reason why she is now aspecial needs child in our life,
and we lost, you know, her.
She's still in a minimallyconscious state. You know, from
a neurological perspective, shehas severe brain damage. She's
not with us in the same way thatshe was before, and I won't know
the reason why, and I I'm okaywith that. I just know it's for
(40:28):
the good. So I didn't ask, Whyme? Because otherwise I would
have been asking, Why me? Whydid I get to get married? Why
did I get to have a spouse? Whydid I get to have three
children? And I know it's areally, you know, a certain
level of belief, but it's, it'show I coped, and maybe that was
ingrained in my upbringing.
Yeah, and other things happenedto me my life, but this was a
(40:49):
pretty big one, so that's kindof what I was going through at
that point.
Natalie (40:54):
I really appreciate that Rachel and I, and you know,
it's really the stories we tellourselves. It's like when you
see other people's lives. I canremember sitting there on the
14th floor in New York, and Iwas feeling, you know, every now
and then I'd be like, I'd feltlike a little bit like Rapunzel,
like I was in this, this whitetower, and I was kind of held
hostage, because I'm in thisgreat city, and it's so great,
(41:16):
and I'm thinking, whatever. AndI would and but I felt like a
hostage, like I had no control,and so I would look out the
window at all the other highrises, and I would make up
stories for the people, and it'sthe stories that we tell
ourselves, and I would alwaystry to make them happy, stories
and or but I agree with you inthe sense of, I think it's what
(41:38):
do we tell ourselves to cope.
And I don't think it's that it'swrong. I don't know that it's
not about being right or wrong.
It's about how did that help youget through that time? But she
was meant to be in your lifeexactly the way that she is, and
she'll be exact, she'll be thereexactly the amount of time that
she's meant to. And I'm a I'malso, we're big believers in God
(41:59):
as well, and and his plan isperfect, and so she's meant to
be here, because otherwise youwouldn't be here with us. Yeah,
I think about things like that.
So sharing your story, yeah. Andso tell let's talk about care,
the care piece of it, and howcare. Because I know we're
getting close to our times timefor Sister questions. I can't
(42:19):
even believe that, but I loveRachel, because she's a sister.
Rachel because she's a sister.
What does care look like for youguys? Now I know that it's
probably evolved and likebecause you said that you had a
nurse. I caught that for a sec,so you had a nurse that provides
support to you guys. What doescare look like for you guys?
Unknown (42:38):
Yeah, so I'll dive into that, but I just wanted speak
about the reluctant caregiverpiece, right? I spoke about the
fact that, like, I kind of copedand just did as I needed to. But
in the hospital, when they weretraining us, I kept saying I
didn't sign up for this. Ididn't want to be a caregiver.
I'm in business. I'm like, youknow, I was not the
compassionate, empathetic, let'sbe a nurse. Save the world in
(43:01):
that aspect, I wanted to be inbusiness. But in healthcare, you
know, that aspect of it, butthis was like, not for me. And I
kept telling everyone I did notsign up to be a nurse. I didn't
want this in my life. Like Iconsciously made a decision to
not go to medical school or tobecome a nurse. And here I am
being faced with needing to getoriented with all these things,
just kind of touching on thebelief. Someone said to me, I
(43:23):
told them, I didn't sign up forthis. I did not sign up for
this. I went around saying thisfor like, at least two weeks.
Someone said there's actually aconcept where your soul up in
heaven before it comes down toearth, gets to pick its package
and your of life. That what itlooks like. And guess what? Your
soul actually did pick this one.
So when you go around saying youdon't, you just sign up for
this, somewhere along the line,you your soul picked this
(43:44):
package of the family that youhave in the husband and
everything. And after that, Istopped saying it, because I
kind of knew they were right. Iwas like, Okay, I give up. I
surrender package.
Natalie (43:55):
It is true. I don't disagree with that. Keep going,
Unknown (43:59):
yeah. So with the care we were set up with nurses. We
went through a lot of nurses. Atthe beginning, we learned
different things. We neededsomeone who was able to get on
the floor and be physicallyactive with my daughter, lift
her up. We had a lot of stairsin my home. Did we have nurses
who were okay with that? Thatmight have meant different
levels of physical fit levels orwhatever. There were a lot of
(44:21):
different identifying criteria,criteria that we kind of learned
along the way, nurses that werenot working for us.
Unfortunately, it was a prettyrocky start. Then we found an
angel nurse who came. She hadher own journey, and she joined
us for you know, it wasinteresting just how her life
aligned to kind of fall into ourlap, and she was with us for
(44:44):
quite a bit, then she had toleave for personal reasons. And,
you know, we've always haddifferent nurses along the way.
We are now in a bad rut. Youknow, we've had some different
nurses, and there's a lot ofdifferent personalities, and
have a busy house. Sold we arearound. I like to think that we
provide a good environment fornurses, but there's a lot of
(45:05):
things that come into havingsomeone in the home that's
right. And even though you couldthink it's going well, I won't
share too much, but I've gottenemails of crazy scenarios of one
nurse not liking that anothernurse changes a diaper or PJs
like, I mean, it could be asbasic as that, and I'm caught in
the middle, and I never realizedthe how much monkey in the
(45:27):
middle I'd be doing betweennurse a, Nurse B, Nurse C, the
home care agency, provider. Andit's really that's what's
draining, you know, talk abouthow I do everything like that is
what drains me most.
JJ (45:37):
It's as a staffing company, you are a gap. You are a boss.
Unknown (45:41):
Yes, even though we have a home care agency, you
know, who works with us, it'sjust hard because I'm in the
home and I see the things theysay and I, you know, there have
been comments about things mykids have been doing which
hurts, which I don't think itwas right that they said it, you
know, I'll defend my children.
But different things thatwonders might have taken a
different things that might havenot make them feel comfortable
(46:01):
in the home. So it's a lot ofnavigating that we are in
Georgia. So we do not get 24hour care, even though she's on
life support, which is a bit ofa challenge. So at night, it's
up to me, my husband, he's incharge of my medically fragile
daughter monitor, and I'm incharge of the baby monitor. So
that was also a harderpostpartum, because normally I
(46:22):
could have his health with baby,but he never knew if later in
the night, he'd have to get upto alarms for my daughter, just
disconnecting herself. Nothing,you know, dramatic, but he was
kind of, he still till today,we're each in charge of our own,
like we have twins again, right?
We were each in charge. He hadhe took care of twin a, I took
care of twin B. That's kind ofhow it went. So we have that
(46:44):
now. And with nursing, I gothrough stages where I'm very,
very blessed to be fullystaffed. And then there's always
those, even if I'm going througha bad day, there's there's
always those nurses thatsurprise me and say, You know
what, you have a party or eventor a wedding you need to go to,
I'll come that day and take careof it. There are really
compassionate people in theindustry, those life saving
nurses who come to my home andtake care of us when we need to,
(47:07):
when we need it most. Butthere's a lot of days where
wears you down. And you know, Ilike to think, you know, we are
appreciative of all thecaregivers out there, but the
clients like myself just reallyneed some extra support to lean
on, whether it's a you knowcaregiver, you know for you,
what you do for your mom, allthose other people out there. I
(47:27):
think the it's not just your ownemotions, but it's like the
emotions of dealing with thescheduling and who's showing up
and are they canceling today,and some passive aggressive
nature, like, there's a lot thatgoes into it. It's really heavy
for me at times?
Natalie (47:40):
Yeah, I could totally see that. Yeah. Well, and let me
ask too, and we are pushing upagainst our time, so I want to
be mindful of that, but I don'treally care. You know, my
standard answer, but then Idon't care. So you've got, you
have, I think, do you have acombination? Well, you clearly
have a combination of paid andunpaid caregivers to provide
(48:01):
support, because she needsadditional support and nursing
meets that need part of it. Doyou have? Would you still say
that you have folks from thefrom the faith community, from
them, from your communityWhere's family is are there
folks that are coming inperiodically to help you guys
(48:23):
or, and I'm just, this is just,I don't know the answer to it,
and it's not to call anybodyout. But do you have other folks
that are also helping you guysto try to navigate this as as
well? Because you you're just,you're saying what we've said a
lot. Caregivers. Need caregiverssome days, sometimes you need a
caregiver for yourself.
Unknown (48:39):
Yeah. So we have the paid nurses who were set up with
if we kind of fall short and weneed some extra support. There's
a few. It's not so easy to findsomeone who's treatment
certified, and that's thedifference, yeah, right. I can't
leave my daughter with justanyone. It's a big weight to,
you know, to carry. It's notjust that physically her weight,
when you know the weight of allher supplies. And we want to go
(49:01):
travel to a family affair orsomething. Yeah, it's just we
can't leave her with anyone. SoI have a friend who used to come
at the beginning. She was moreavailable. She used to take care
of a trach van patient, and shewould come on a Wednesday when I
didn't have a nurse in themorning and help out. We do not
have any family members who aretrach van certified, and maybe
someday I'll find a sibling orniece, or, you know, someone who
(49:24):
is passionate about it, but wedon't really have medical
professionals in our home, inthat in our family, in that way,
who are eager to learn that wetry to keep my son not super
involved. I don't want him tofeel the responsibility of
having to save my daughter'slife. That could be really hard.
Yeah. So we help him, you know,if he wants to reconnect
something and we're around,we'll say, you want to run up
(49:45):
and do it, but we don't reallywant him to feel the burden
there. And then there's a fewfamily member a few community
members, one who works in thehospital where my daughter
sometimes gets admitted, whichis really, really nice, but it's
pretty lean on that in that end.
Because there's not many who aretrained, but I will say that we
have family members coming in tohelp with carpools and different
things like that. That's alsocare, yeah, which is really,
(50:08):
really helpful if we need it. Ifmy daughter would hypothetically
get admitted or do differentthings, we could call them and
they'd be
Natalie (50:16):
here, yeah? And I think that's that it sounds like
they're you're really managing ateam, and you're managing the
group and coordinating care foryour daughter, but also for the
children, for family, you'recoordinating life. There's a lot
of feels like a lot ofscheduling and and trying to
allowing for those surprises.
But you built a beautiful life.
(50:37):
I slowed you down, Rachel, and Ilove that about it, I think. And
I want to go into some of thequestions, because let's go into
sister questions. Are you ready?
I am super
JJ (50:46):
ready. So you said something my my question is you said that
your daughter is on lifesupport, basically, and that she
is medically fragile. And thattouched me. What does your what
does your future look like?
Rachel, what do you say for youall, a
Unknown (51:07):
good question. I'll tell you. My husband called up
someone who had who has atreatment child who's about 13.
It's their only child. And myhusband said, How do you cope?
And he said, I only take it oneday at a time. And I know it
sounds so simple, but it's true,like I could sit here planning
and thinking about what will be,but I really don't know. I mean,
(51:29):
maybe we have plans to hopefullyhave her come off a trick that
you know, the trach at somepoint, maybe not tomorrow, but
it's not out of the question.
The you know, her team isworking on that at some point,
so maybe that will lookdifferent. Honestly, I'm
thinking about like tomorrow andif I could get respite care at
some point to go, you know, on abreak at some point. You know,
(51:51):
that's kind of my near future.
What I'm thinking about, yeah,but I don't think about forever
and always what that looks like,because I Listen. I'll tell you
we we were blessed to doconstruction on our home, and we
customized all the plans twomonths after we started, or
really right as we broke ground,my daughter had her stroke.
(52:13):
Everyone sees our home. Thereare steps going off, there's a
lot of steps around. Andeveryone's like, what are you
going to do with this house? Isaid, if I was meant to
customize my home to mydaughter's needs. I think God
would have arranged it so thestroke happened, like, right
before, you know, when we didthe plans, like, that's no
fluke, right? That's crazy. Wehad the opportunity to customize
plans, and we just didn't. Sofor now, we're not we put a ramp
(52:34):
in the backyard, but I'm notthinking about it just yet.
She's only three and a halfagain. I don't think about,
like, 20 years ahead, but atsome point I may have to move
right. What does that look likefor my home that can't
necessarily accommodate mydaughter in the perfect way?
Yeah, it might not be. It mightbe a luxury to accommodate her
perfect way, but I might try, ifI can at some point. Yeah,
Natalie (52:56):
you know, I think there's a couple of things that
you had mentioned to us becausewe had asked you about, you
know, hey, what are things? AndI feel like we've hit on a lot
of them, but there was one thingthat you said that struck me,
and I think it's the opposite ofwhat I think most people would
say. And you said, Mypersonality is not to rely on
anyone, and that was the firstthing we started with, and
(53:18):
assume people will cancel. Itmight be pessimistic, just
Unknown (53:21):
on the rely, yeah, I love to show up.
Natalie (53:23):
Yes, well, and I think that's the point. And I think
the part that I liked is how youended it. So having low
expectation and being surprisedhas helped me Tell me a little
bit more about low expectationsand being surprised. So,
Unknown (53:35):
you know, I have family members when I tell them, Oh,
can you believe it? A nurse, youknow, canceled for today, maybe
for a good reason, maybe theywere sick, or whatever the case
may be, they're like, huffingand puffing on the phone, right?
They're upset for me, and Iappreciate their sincere, you
know, condolences for my nursenot coming home, and I'm dealing
with whatever I had going onthat day, right? But I'm like,
You know what? I always kind ofexpect it, not because I don't
(53:57):
rely on caregivers. It's just Icope. It's a coping mechanism. I
am totally fine. I mean, it'supsetting, but I could move on,
and that's just how it's been,right? I think I rely on friends
and family and those a bit more.
Maybe it's just the nature ofrelying on things related to my
daughter, because if a familymember says they're coming to
pick up your kids, should theycome to a party? I would be
(54:19):
upset, right? Or differentaspects related to that, and
family does show up. They saythey're coming, they'll be
there, but I think related tothe help and just the nature of
caregiving and the hired help,right? I'm thankful that I am
around. And on days when a nursecancels, I said, Okay, you know
what? I'll get to give mydaughter extra kisses today,
like I just respect it. MaybeI've been too busy that week,
(54:41):
and I get to, you know, focus onher, but it's hard. It's just I
don't want to sit there andwallow and have to change all my
plans because I assume thatsomeone was going to show up. So
I had. Do have a lot of people Ican rely on, but I, I don't
know, I err on the side ofcaution to protect myself, maybe
well, and
Natalie (54:58):
I think it's part protection. But it also allows
you to roll with it, and you'renot going to spend a lot of
energy on things that won'tserve you and and that's a good
and, you know, I think that. Ithink that is fine in it,
because you're right. Peoplecould sit there and be like,
why? It's why me? Why do I havethis? And you could say, well,
(55:19):
they're not going to show and Idon't hear you saying, well,
they're not going to show upanyway. It anyway. It's not
about that. It's really aboutlike life happens. My child had
a stroke at one and a half, sothings unexpected will happen,
and I'm going to be okay withit. I'm going to make sure that
I'm okay with it, because itwill happen. It's not that it
will never happen. And I thinkit's just a shift in the lens
(55:41):
of, how do I manage the the itgoes back to the chronic
unpredictability. There is a lotof unpredictability every day,
and so at least you know foryourself, you're able to say,
I'm going to be okay with this.
No matter what happens, good orbad, they show up. Great, they
don't show up. I'll deal withit, but I'm not going to melt
(56:04):
down.
Unknown (56:07):
Yes, and I think that's the difference, because I always
say this example, like my mothertaught us all how to clean,
like, if the clean lady doesn'tshow up, like, Okay, we still
know how to clean. And I know alot of people rely on cleaning
help, and I'm not the bestcleaner, but we don't melt if
our cleaning assistance doesn'tshow up. And I think I was
always brought up with thatmentality, right? Yeah, and then
COVID hit, right? How manypeople were drowning once COVID
(56:29):
hit? And different thing, peoplecouldn't show up to take care of
their services. I think that'smentality I like what you said,
which is, it's not with anger.
It's not with anger that I can'trely on anyone I know. I can
rely on certain people forcertain tasks, but life happens.
Someone might their car mightbreak down, whatever the reason
might be. I just that's theattitude that I
Natalie (56:47):
have, very lovely. It is care. It is say, lovey, yeah,
I have my last question ready. Iam This is always my last
question, Rachel, because I knowJJ had asked her questions. You
have any other questions? Good,I'm good. Okay, solid, just
making sure got it. All right.
Always want to be respectful ofmy elders. You're so welcome for
that. That was free. That was afreebie at the end. All right,
Rachel, what? And this is peopleare going to be like, I
(57:11):
definitely want to hear thisone. What is your favorite
guilty pleasure? What is the onething that you do just for you,
because you got a lot going on.
Girl, what is the thing that youdo for just you? That it's just
for you.
Unknown (57:28):
If I have the day, I will go out by myself to the
outlets and shop. I don't evenneed to buy anything. But like I
will, I just need the day. Itdoesn't happen so often. I did
it for my birthday in Septemberlast so I hope it doesn't wait
until next September, but in theinterim, there's bits of just
going outside and catching someGeorgia sun for a few minutes a
(57:48):
day. I know it's not, mightsound funny, but sitting down
and eating a proper meal duringthe day is a bit of self care,
because I'm working and Isometimes, and it's not always.
Most days, I do have coveragefor my daughter, but it's like
getting the time to take a havea proper meal. Yeah, and just
(58:09):
time for myself. Sometimes I dojust run out on different
errands. And if I'm by myselfand have the luxury to do so,
I'm not completely strapped athome, but if I have time to do
something that's like going tothe mall for an hour. Like
things that normal people can domaybe, or maybe not. People are
busy in life, right? But thoseare the things that just make me
feel like, okay, I could justperuse a store and be normal,
(58:31):
and, you know?
Natalie (58:32):
Yeah, I just, I agree with it gotcha. I totally agree
with that Trader Joe's was myfavorite. I would go to Trader
Joe's and they would just, and Iwould just peruse. That is
anything didn't have to buy. Ididn't even need anything, but I
went to Trader Joe's every dayand perused, and got to look at
all the other people, and peoplewatch and wonder, and just be
(58:56):
like I felt like everybody else,yeah, just like everybody else
and so, and so, and that's thebest part about everybody else,
is you have no clue what's goingon in their life. And so this
has been so wonderful, Rachel,
JJ (59:07):
it's such a beautiful story.
And thank you for sharing it.
Thank you for sharing with usfirst, because you said you'd
never share the full story, andit is beautiful,
Unknown (59:16):
and maybe the one and only, until my husband decides
to write another book.
JJ (59:20):
Yeah, no. But your attitude about everything is that's the
most beautiful part about it,and that it's not slowed you or
your family down. You havecreated a beautiful life,
regardless of the circumstances.
You just, you just, you justroll with it, and you've created
something
Natalie (59:34):
amazing. She's living an and life that's exactly
right. And this and this, I'mgoing to be this is hard, and
I'm going to get through it, andso I just, I think you're an
inspiration and just a blessing,and I'm grateful to know you so
guys. Thanks so much for joiningus and listening in and until we
confess again, we'll see younext time. Bye, bye. Well,
(59:59):
friends, that's. A wrap on thisweek's confession. Thanks so
much for listening in to thepodcast, but before you go,
please take a moment to leave usa review and tell your friends
about the confession show. Don'tforget visit our website to sign
up for our newsletter, as wellas connect with us on Facebook,
Instagram, LinkedIn, Pinterestand Twitter. You'll also find
(01:00:21):
the video recording of all ofour episodes on the confessions
website and our YouTube Channel.
We'll see you next Tuesday whenwe come together to confess
again. Till then, take care ofyou. Okay, let's talk
disclaimers. We are not medicalprofessionals and are not
providing any medical advice. Ifyou have medical questions, we
(01:00:42):
recommend that you talk with amedical professional of your
choice. As always, my sistersand I at confessions of our
reluctant caregiver have takencare in selecting the speakers,
but the opinions of our speakersare theirs alone. The views and
opinions stated in this show aresolely those of the contributors
and not necessarily those of ourdistributors or hosting company.
(01:01:06):
This podcast is copyrighted andno part can be reproduced
without the express writtenconsent of the sisterhood of
care LLC. Thank you forlistening to The Confessions of
a reluctant caregiver podcast.
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