October 29, 2024 • 54 mins
What happens when the unimaginable becomes reality? Staci joins us to share her deeply personal journey of love, loss, and hope after the passing of her beloved daughter, Karlee. In recounting her story, Staci reveals the strength and faith that carried her and her husband, Tom, through the trials of a heartbreaking diagnosis. From a loving marriage to the challenging road of pregnancy, Staci opens up about their decision to embrace the journey of welcoming Karlee, a baby diagnosed with hydranencephaly, into their lives.
Staci's story is not just about loss; it's a testament to the enduring power of faith and community. By sharing Karlee's legacy and the profound impact she had on her family, especially her siblings, we delve into the importance of cherishing every fleeting moment with loved ones. For anyone experiencing grief, Staci offers wisdom and solace, highlighting the healing found in shared memories, faith, and the unwavering support of loved ones. Join us as we remember Karlee and the compassion she left behind.
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Episode Transcript
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Speaker 3 (00:15):
Today I want to welcome a special friend.
She and her husband experiencedtremendous loss but at the same
time, their light shines bright.
I've asked her to come on thepodcast to share her story of
surviving the loss of a child.
Stacey is one of the sweetestand most kind-hearted people
that I know and I'm so glad youget the opportunity to hear the
(00:37):
love, courage and faith that haskept her going.
Stacey, thank you so much forsharing your testimony and
opening up oh, my pleasure.
First I want to start with alittle bit of history about you
and Tom.
Okay, All right.
Speaker 2 (00:55):
So Tom is eight years older than me and he joined the
church that I go to, st Peter'sLutheran Church.
That's the church I grew up at,and he joined when he was a
teenager and so I watched himfrom a distance because he was
in a totally different age groupfrom me, so I didn't really
(01:15):
know him very well, but Iadmired him from a distance.
We'll put it that way.
Our paths crossed again.
I was married to someone elseand singing as a substitute in
our contemporary band at church,and so you know I had two
(01:43):
children when we met again andthen consequently went through a
kind of a rough divorce and westarted dating soon after that.
Yeah, I always wondered why henever married and he was
actually 40 when we married.
So he was fabulous aboutstepping into a ready-made
family, because I had afour-year-old and a
nine-year-old son and daughterand he just made a great stepdad
(02:06):
.
They've been very blessed tohave him in their life.
Speaker 3 (02:10):
That's awesome.
So how long had you guys beenmarried when you became pregnant
with Carly?
Speaker 2 (02:18):
About not quite two years.
Yeah, not quite two years,because we got married in 2004.
Actually, it was just right attwo years when she was born.
Speaker 3 (02:32):
Okay, yep, okay.
So now explain to us a littlebit about your pregnancy.
Speaker 2 (02:40):
Okay.
So you know, as far as we knew,everything was great, um,
except, you know, as as we wentthrough the pregnancy they kept
saying and they didn't soundlike it was a really big deal
they just started talking abouthow her growth wasn't on track.
She was small, she wasmeasuring small and, um, never
(03:02):
really made a big deal.
I'm sure she'll catch up.
You know nothing like that.
We first knew that there was aproblem.
There was a friend of mine atchurch that was also pregnant,
who had run into someone who waspracticing that was right when
4D ultrasounds were coming out,you know, when you got the
(03:23):
really clear picture of thebaby's face for the first time.
And she knew someone that wastraining on a piece of 4D
ultrasound equipment in aneighboring town, like 20
minutes away or so.
And so she hooked us up withthis girl and we didn't have to
pay for it because she waspracticing on it.
(03:43):
And so we went up on a Sundayafternoon and so we got, you
know, she got me all hooked upand everything, and immediately
she stopped and she said whatare they saying about her head?
And I'm like nothing other thanthat she's just measuring small
all over.
And she said we're stoppingright here, and who's your
(04:08):
doctor?
And she got like, on the thedoctor on call number.
She called my physician'soffice and asked the operator at
the hospital to put her intouch with my doctor and she
said this is what I see, youneed to get them an appointment
tomorrow at Baptist.
And so my my doctor, dr Faroukshe was fabulous through all of
(04:33):
this.
Um, she did, she pulled somestrings and we got.
We had an amniocentesis the verynext day, which just happened
to be my birthday at Baptist totake a look.
And you know they thought thatmaybe they were preparing us to
hear things like she may haveDown syndrome and things like
(04:54):
that.
So we were kind of lookingaround at that and preparing
ourselves mentally for, you know, for a Down syndrome child,
which was great, you know, wedidn't care, yeah, so that that
was really our first indication.
Then, shortly after that, theyhad me do an MRI and that was
(05:16):
miserable because I was so I mymy reflux and and indigestion
was so bad that anytime I waslaying flat I just felt like I
was having a heart attack, andso just the test itself was very
difficult and that was when,you know, they had my stomach
under the MRI and that's the onethat takes like cross sections
(05:40):
of whatever they're imaging, sothey could kind of see inside
and slice it, look at it inslices and, um, little did we
know, because that was, that wasa miserable time for me, but
little did we know they weretrying to chase us down after we
left, because they said thatevery time, the because it was
(06:02):
very loud is that every timethat machine whirred, carly
jumped, you know.
So almost all of their imageswere blurred, but they, I guess
they had enough to see what wasgoing on and they didn't have us
come back and do that again.
So that's when we got thediagnosis of hydrinencephaly and
(06:28):
I know that sounds familiarbecause you've probably heard of
waterhead babies.
Right, that's what they're.
They're being referred tohydrocephaly, which is very
similar.
The difference is that ahydrocephaly or waterhead baby,
that water from the spinal fluidis constantly moving like it's,
(06:50):
it's filling up and and justconstantly draining out, and a
lot of those kids have to haveshunts put in to drain that
spinal fluid off.
But Carly's was different inthe sense that the water that
was in her head never moved Likeit was.
They told us.
It was like a placeholder, likeit was taking the place of
(07:12):
where her brain should have beenand it just stayed constant all
the time.
So there was no need for ashunt to drain it because it was
not continuing to fill up.
And as far as what caused it,they just they had no idea.
They were guessing.
I think the one that theywanted to go with was that she
(07:32):
possibly had a stroke in uteroat about 12 weeks.
So that's about the point theysaid that her brain had
developed to, and I think that'swhere they got that from.
But yeah, the prognosis was notgood.
(07:54):
We went to Baptist and everytime we went, I remember on our
trip down there, it was about anhour long drive down there, and
so Tom and I were like allright, what are we praying for
this time, you know?
Cause we didn't really know,you know, what to expect, what
to focus on, and it seemed likeevery time we went the news was
(08:16):
bleaker and you know we werejust like oh, this is just no
good news, you know.
And so I remember one time Iwas just like let's just play
pray for grace, let's just justfor grace and mercy, just to get
us through this.
But, um, the doctor that wasthat was dealing with us in
Baptist didn't have much of abedside manner and, um, at one
(08:40):
point he he said, you know,she's probably not even gonna
survive birth, you know she'll,she'll be a vegetable.
Um, you know, I really thinkthat you should, should think
about aborting it.
And he called her an it and Ijust, oh, that was such such a
turnoff for me, oh, and I'm likewe will.
(09:00):
We will not consider that, youknow, and and her name is car
Carly, we'd already named her,she has a name and that will not
be a course that we will bepursuing.
And they wanted to set up abirth plan.
I would deliver at Baptist andthen, whenever Carly got here,
if she survived birth, they weregoing to whisk her away and
(09:23):
take her to another buildingwhere, like the children's
hospital was.
So I wouldn't even get to seeher or spend time with her
really until, you know, until Ihad recovered or whatever.
So none of that sounded verycomforting to either one of us,
(09:43):
and so we were like, you knowwhat, if we're, if we are going
to have to deal with this as adelivery, we just want it to be
at home with a doctor that wetrusted and knew and loved.
I mean, she had delivered bothof my other children, dr Farouk,
and she was fantastic.
She met us at a park near herhouse on a Saturday, brought us
(10:06):
a vase of flowers that she hadgrown at her house, and we sat
there and cried and talked andcame up with a birth plan.
You know how we were going tohandle Carly and I was just you
know, so comforted by the factthat she I knew she cared you
(10:29):
know right, yeah, carly was notan it to her exactly exactly,
yeah.
So so that's what we decided todo.
And you know she prepared usfor the worst.
She said you know she's verysmall.
She prepared us for the worst.
She said you know she's verysmall, there's a possibility
that she will come out in pieces.
I mean, it was just not apretty picture.
(10:53):
So you know God teaches youlessons through that, because I
tended to get a little bitter atthat point.
I know you've had two kids, soyou understand that when you're
pregnant, it seems likeeverybody around you is pregnant
.
Like everywhere you go you seesomebody else that was pregnant
and I just looked at these otherwomen and I'm like something's
(11:16):
wrong with my baby and she'sgoing to have a perfect baby.
Of course, I didn't know that,but you know how your brain
thinks whenever you're goingthrough something like that.
But I tell you what God got myattention, um, this one
particular time.
I remember um he was, he wasgoing to teach me a lesson,
(11:38):
because he'd about heard enoughof my thoughts along those lines
.
But we were, we were out to eatit was just tom and I the kids
weren't with me and um, we werelooking over and there was a
very young couple.
I mean they look like barelyhigh school age and she was
pregnant and I was like look,look, how young they are.
(11:59):
They can't possibly be goodparents.
You know they.
You know, you know how youjudge people.
You see judgment of people,right.
I was like you know, that'sjust not fair.
That she's gonna have, she'sgonna have this perfect baby and
there's something wrong withmine.
And and then they reached overand they held hands and they
(12:20):
prayed before they ate and I waslike that was such a lesson for
me.
Oh yeah, yeah.
I was like don't stand injudgment of other people just
because the situation you're inis not perfect yeah, hey, we've
all been there, right, so we'veall passed that judgment.
Well, that ended those kinds ofthoughts, let me tell you,
(12:42):
because I had learned my lessonby not you know, judging someone
else's situation based on whatI was going through.
So, yeah.
Speaker 3 (12:53):
So you gave, so the day came.
Speaker 2 (12:56):
Yeah, the day came and you know that was that was
really.
I mean, I'd been through twoother births and and the
contrast to between those twoand this one was completely
different.
It was you know how you go, andyou've got this happy, excited
feeling and we didn't go in withthat.
(13:17):
We were like, okay, we're justgoing to make the best of a bad
situation.
And you know, the plan was thatthat that if she survived birth
, she probably wasn't going tolive long and we would just hold
her until she died.
That that was the plan, right.
And we had prepared, you know,jordan and hannah, my, my
(13:40):
children for that possibilitythat we would not be bringing
Carly home.
And so it was kind of it was apretty somber occasion, very
different from we didn't.
We didn't even really preparevery well.
They had put me.
(14:02):
They had put me on bed rest andI was taking like weekly steroid
shots and they had been comingto the hospital and hooking me
up to machines so that theycould monitor her every week.
And so for the last, for goshhalf of my pregnancy, I was on
bedrest and it was prettydepressing to sit around and not
be able to do anything.
And my parents and Tom, theywere just like, okay, we're just
(14:22):
going to paint her room, we'rejust going to paint her room and
get it ready, you know, as ifshe's coming home.
And so they just tore into thishouse while I just sat here and
watched everything and um andgot ready good, that's what I
was gonna ask was about anursery or yep yep, yep, matter
of fact, that's the room I'm inright now.
(14:43):
So, yeah.
So, um, yeah, they did that andwe didn't.
We didn't really have clothes,it was.
It's really kind of awful howunprepared we were because we
weren't giving God enough credit, you know, I mean he is the God
of miracles and we should, weshould have known better, um, um
(15:03):
, but the same girl that, um,well, let's get to the birth,
okay.
So so we get carly there andshe I mean dr farouk is like you
know, this is this may take awhile to get her out.
No, she just popped right outlike nothing, that easiest birth
ever, yeah, and and she looked,I mean, you know, she, she had
(15:25):
some things going on that lookeda little different and we can
talk about that if you want to.
But I mean, her Apgar score waswonderful, I mean she was doing
great.
But the plan was for them tojust wrap her up and hand her to
us.
And you know, they called inour pastor.
We're lutheran and we wantedher to be baptized if at all
(15:49):
possible.
So he came in and baptized herwith water from a dixie cup.
So we all kind of had a laughabout that.
But, um, he came, he came in acountry song, baptized from a
dixie cup.
At least it wasn't a red solocup, it was a little it's like
one of those little bathroomwater cups, yeah, yeah.
(16:12):
So, um, he came in and baptizedher and you know she just kept
hanging around.
You know she was, she waslooking around and new big old
eyes and, you know, just seemedvery alert.
She's very quiet.
She didn't make any soundscoming out, not making a whole,
but I mean, like I said, herscores were good.
They were measuring her everylittle bit.
(16:32):
They're like she's great, youknow.
And they're like, well, what doyou want to do?
And I'm like, well, if she'sgonna hang around for a little
bit, let's clean her up.
Can we?
And and get the family in here?
Because, you know, so they knewshe'd been born.
They brought my parents and mykids in and so they got to see
(16:53):
her and she weighed right atfour pounds, I want to say three
pounds, 14 ounces.
I mean she was tiny, yeah,absolutely tiny, and a normal.
But she was 40 weeks.
I mean they I went full termwith her.
So, um, you know, usually whena preemie is born, they'll make
(17:18):
them stay in the hospital untilthey reach a certain weight.
And, um, I was there for liketwo or three days and she was
good and they basically saidwell, you know, just take her
home and love her.
It was the strangest thing.
I mean, they didn't expect herto live.
They're like she's just takeher home.
(17:40):
They sent us home with a DNRlike a do not resuscitate order,
which was awful.
They wanted us to have that inplain view and I remember that
thing was like for a couple ofweeks tacked to our refrigerator
and I walked by right and aftera few I'm like I, I don't want
anything to do with that like weum, we um threw that away
(18:05):
fairly quickly, but there weresome.
Really, I mean you could seeGod's hand just from the very
beginning of everything,obviously, I mean she stayed, I
mean she was, she was good andthey sent her home with us.
But at the hospital, you know,once you give birth, then it
goes to the doctor, thepediatrician doctor, and so they
(18:29):
had her in the NICU, um, and Imean they would bring her to us
all.
I mean we got to keep her inthe room a good bit, but, um,
there was a doctor that had puttogether a birth plan, you know
that kind of picked up after DrFarouk was done with me.
Then he picked up and heimmediately wanted to put a
(18:50):
feeding tube in her and we were,you know, pretty much told that
that was going to be apermanent fixture.
I mean like she would need afeeding tube if nothing else.
Um, and a nurse that was in theNICU lied to him basically and
said um, before you do that, theparents want you to try her on
(19:11):
a bottle.
And we never had thatconversation.
I was going to say you nevertalked to that nurse.
No, we never talked to thatnurse.
She just basically cameafterwards and told us what she
had done and she's like I hopethat's okay with you, that's
great, because she latched ontoa bottle immediately.
Speaker 3 (19:29):
How much?
How was her eating?
Was it like a normal child,normal baby?
Speaker 2 (19:34):
Yeah, I mean she ate regularly.
I mean, you know, when theysent her home with us, well,
they also.
Okay, let's back up a minutethey also did like a hearing
test on her that was based onbrain waves, at the hospital
before they sent her home, andof course, she failed miserably
because with the hydridencephaly they estimated that
(19:59):
she had about 10% of her brain.
So she basically they describedit to us as like an ice cream
cone.
She had the brain stem, whichwas the ice cream, the cone part
, and then she had a partialfrontal lobe, which is where
personality and things like thatlive.
(20:20):
That's where that's that partof your brain.
But other than that, it wasgone, like 90% of her, it was
fluid, it was nothing but awater sack, basically, for the
rest of it.
And so, um, after we got home,the hospital called back asking
whether or not they wanted wewanted them to do that hearing
(20:42):
test again, and I said, well, isit the same test that you gave
her at the hospitals, based onbrain waves?
And he said, yes, and I'm like,well, she's going to fail it
then, because you know, no brain, no waves.
So, but I knew, we both knewthat she could hear even before
she was born, because my husbandis a musician and he plays the
(21:07):
bass guitar and he played in thecontemporary band at our church
and other bands.
But he loved to play AlisonKrauss and he would crank it up
and that was the same room inour bedroom where my computer
was that I worked on, and so hewould crank it up and play his
music, alison Krauss, and everytime Alison Krauss came on she
(21:29):
would just go nuts inside of mejust kicking.
I knew she could hear andthat's the reason why the images
were so bad that they took anMRI, because every time that
machine whirred she was movingbecause it was startling her.
But we knew for a fact that shecould hear because she startled
whenever our dog barked oh,yeah, so we knew that was a
(21:53):
thing.
Yeah and uh allison krauth.
Speaker 3 (21:55):
She's like one of my favorites ever.
I mean, oh, I know, her voiceis so magical and I know she
does yeah, and when I taught myfirst two years straight out of
college, I taught in a littletown called Waynesboro, georgia.
It's right outside of Augustaand it's the height of like of
90s rap and stuff and that'swhat they were really into.
(22:18):
But I would play Alison Kraussand the room would calm and,
like those kids, they enjoyedlistening to her.
Speaker 2 (22:26):
Oh yeah.
Speaker 3 (22:27):
It was just so funny and I love hearing that Carly
would respond to allison.
Speaker 2 (22:32):
Yeah, allison krauss, yeah, and we've since seen her
in concert.
But I can't think about allisonkrauss without thinking about
carly's reaction yeah, yeah, Iunderstand.
Speaker 3 (22:44):
Um, so you had mentioned some miracles along
the way, how God took care ofyou and Tom.
Can you expand a little bit onthat?
Speaker 2 (22:55):
yeah, it was just.
You know, it was kind ofamazing.
I'm not a very, and I should be, but I've never been a vocal
person about my faith.
I mean, I can, I can talk aboutit, but I don't approach people
and talk to strangers about it,like I.
Like I know that we're supposedto do, but Carly really didn't
give us a choice.
(23:16):
Um, and that's definitely onething that Tom and I both
learned is that you know, therethere are people that are are
hungry for, for a miracle, Iguess.
And you know, every time wetalked to somebody about Carly,
we talked about what a miracleshe was and how she wasn't
supposed to be here.
But he put people like thatnurse in the NICU unit.
(23:40):
He put people in our path thewhole time that she was there
and just some of the strangestthings would happen and we would
just sit there and look at eachother and shake our heads over
it.
Um, there was another, anothernurse while Carly was in the
NICU and she would come by onher lunch breaks and pray over
(24:02):
all the babies in the NICU unitand I just thought that was the
coolest story.
Um, um, I don't know that weever met her, we just heard
about it, but um, but then wehad a ton of specialists that
saw Carly and I learned a lotabout how the brain is supposed
to work when uh, you know, in ababy and and what they're
(24:24):
supposed to be able to do, andthings that we just take for
granted when we have normalchildren.
We don't even know it's a thing.
Um, I mean, we knew along theway that that there were, there
were things that were differentabout carly, because with the
specialists they would, theywould tell us things and try to
figure out, you know, if, didshe have a syndrome?
(24:46):
What was it that we weredealing with?
And there was never reallyanything conclusive.
But we saw things along the way, like, for instance, they
decided that she had somethingcalled cortical visual
impairment, cvi, and the waythat they explained it to us is
that it was like carly waslooking through a piece of Swiss
cheese, so she did not have anyperipheral vision and she was
(25:10):
only able to see just pockets ofthe picture that was in front
of her.
So she had special glasses forthat and we went about an hour
away to a specialist and theywere the ones that diagnosed her
and gave her the, theprescription, and we brought it
(25:30):
back to our hometown to have itfilled at a place called
treasures vision, and we had, wehad.
We just knew that she wasreferred to us because she could
do those kinds of glasses.
She had that capability and itwas just a lady that owned her
own her own glasses shop and, um, so we met her and we told her
(25:53):
Carly's story and she would notlet us pay for those glasses.
She gave those glasses to usand they were so funny.
They were, um, they were like ahot pink plastic plastic
glasses and they we had a bandthat would hold them on her head
, and it was kind of difficult,because one of the little things
(26:13):
that Carly had different abouther is that she had kind of an
underdeveloped looking ear onone side and it was a little
lower than it should have been,than it should have been, and so
the glasses were a little wonky.
Anyway, because it was, shedidn't really have but one ear
in the right place to hold it upfor one thing, but she hated
(26:35):
those things.
As soon as you put them on herface, she would reach her little
hand up there and grab them andpull them off.
It was a constant battle, yeah,so, um, that that was just one
example of someone.
Um, we, we would run intopeople in the stores and Tom was
(26:56):
.
We decided I mean we could havetreated her like, uh, like we
needed to cocoon her and wrapher in a little bubble and not
let her engage in life at all.
Yeah, but we just we just kindof looked at every day with
Carly as a gift and so we just,we just took her everywhere.
Yeah, we wanted, we wanted herto be exposed to as many people
(27:19):
as possible, which I know thatsounds especially in the age of
COVID.
Speaker 3 (27:23):
Yes, how could?
Speaker 2 (27:24):
you expose her to all those germs.
But you know we were like.
Speaker 3 (27:27):
You know what she's here, let's, let's let her live
as much as possible, especiallysince she wasn't even supposed
to make it past birth Exactly.
Speaker 2 (27:36):
Exactly so we took her everywhere and, tom, we got
this little sling.
That's the only thing.
I mean.
It was just like I don't knowsomething.
He wore across his shouldersand it was just a sling, I don't
know something.
He wore across his shouldersand it was just a sling, and she
was so tiny and we would just,he would just carry her on his
hip that way and she was down inthis.
You'd open up the folds of thislittle sling that she was in
(27:58):
and one of the things that shedidn't do was blink.
A lot Occasionally she wouldblink, but that was one of the
reflexes that just that kind ofdeveloped over time.
And, um, so you will, you wouldlook in the in that little sling
, and all you saw were thesehuge eyes staring back at you.
(28:18):
And I remember one oldergentleman in a store.
He was like what have yougotten there?
And um tom said well, it's ourbaby.
And he would.
He would look down there.
He said it looks like a littlebush baby.
You know how they speak.
They go ask what you.
Somebody else came it's likewhat you got in there, a sugar
glider?
It's like no, it's not a sugarglider, you know.
So you know all these people.
(28:40):
It was like she was.
We said she was a magnet people.
Yeah, like what you got in yoursling, you know, they would
just come up to us to know whatwas in the pouch.
So we would tell Carly's storyover and over and over again.
I remember taking Tom to adoctor's appointment and she was
with me and there was this, Idon't know, this crusty old
(29:03):
gentleman he looked very grumpythat was sitting with us in the
waiting room.
His wife was there for somereason and it was just Carly and
I out there and I have no ideawhat made him want to do this.
But he said can I hold her?
I'm like sure and she had thisability whenever you were
(29:25):
holding her that she had yourundivided attention when she
never took her eyes off of yourface.
She loved a person's face thereand you should have seen she
just like it was like some kindof joy came over this old grumpy
guy holding carly because shemade him feel so special.
(29:47):
And she, she had a habit oftaking both of her hands and
putting them on the sides ofyour cheek and holding your face
still so that she could look atyou, and she was doing that to
him and it was the coolest thing.
She just, she was just likepure joy.
Speaker 3 (30:06):
She really was all the time, oh my gosh she was so
sweet how did it change hisdemeanor?
Speaker 2 (30:13):
he just he lit up and he was just talking to her and
whenever you talked to carly,she was so serious about
listening to everything you saidand when you talked to her she
would smile.
Um, she smiled a lot and um,she was never grumpy, never
fussy.
Um, if you walked by her, likeyou had her I don't know laying
(30:35):
on laying down somewhere whileyou were doing something, as
soon as you walked by, both armsflew straight up in the air
like pick me up and it was.
It was really hard not to pickher up.
She got she got a lot ofattention and holding.
Speaker 3 (30:50):
That's for sure.
Oh she did, oh she did.
Speaker 2 (30:53):
Yeah.
Speaker 3 (30:56):
So how old was she when she left us?
Speaker 2 (31:00):
So she was two years and four months old and she
topped out at 17 pounds.
17 pounds, 17 pounds that's asbig as she ever got.
Yeah, whenever they sent ushome, they also assigned us a
hospice nurse.
She was fantastic.
Tom had just finished EMTtraining.
(31:21):
You know, god works all theselittle things along the way.
You look back and you're like,well, that's why, yeah, but it
wasn't something he stuck with.
He didn't, he didn't likehaving to make those snap
decisions, you know, and justspur of the moment, and so emt
was not for him.
But that training sure came inhandy when we had carly um.
(31:42):
There was one point and we'dalready thrown thrown the DNR
order away long ago.
But there was one point whereshe started like turning blue
and we couldn't, we could.
It's like she was fading, wecouldn't get her back and we
called her hospice nurse and shecame flying over to our, broke
(32:03):
all kinds of speeding laws andeverything to get to us, and by
the time she got there, you knowTom had gotten her back, and
that was the only time that wereally came close to losing her
until the very end.
But, yeah, god, he had Tom,take that EMT training so that
(32:24):
he would know how to handleCarly.
Speaker 3 (32:27):
Yeah.
Speaker 2 (32:28):
Yeah.
Speaker 3 (32:32):
So what changed in her health?
How did her decline start?
Speaker 2 (32:35):
well, um, you know, we were not exactly sure what
caused it.
The doctors supposed that whatcaused it to start with whether
it was a stroke or whatever,whatever caused it to happen the
first time possibly happenedagain, and I mean I know I had
(33:02):
had a cold, but nothing major,it was right.
Um, it was right aroundThanksgiving and she stopped
eating and she had therapists.
She had three therapists thatcame and did things with her um
each week and, um, like they hadjust fitted her for something
(33:23):
they were calling a cloud walker.
She didn't have, um, a lot ofmuscle strength and so she was
pretty like a limp kind of likea limp noodle and um, so they
had just put her in this thingcalled a cloud walker that if,
if she made any kind of movewhatsoever to walk, it would
(33:46):
pick up her foot and move it forher.
So she had all kinds of niftylittle things like that.
But so she had only been inthat thing like three times and
we were really hopeful.
You know that this wassomething that was going to be
good for Carly and you know whoknows what we would be able to
do with her down the road.
(34:07):
We were very hopeful of that.
But she got sick and she justnever got better and she stopped
eating and she started cryingand you know, I was just so
afraid that something washurting in her head, hurting in
her head, and the doctor thatsaw her the whole time that she
was anytime like she.
(34:33):
She would treat her for a, foran ear infection Anytime that
she was fussy because her earswere so small she could not see
inside her ear canal.
But she just kind of assumedthat maybe that's what it was
and would treat her that way.
And we took her to the doctortwice that week.
But her regular doctor thatknew her history and had treated
(34:58):
her all this time was onvacation and so I mean not that
I'm blaming it on that, but butnobody really knew what to do
with her and we were just, wefelt pretty helpless and she
ended up.
We ended up taking her to thehospital and I had gone home to
get a shower and while I wasgone she opened up her eyes and
(35:19):
Tom was there and she looked athim and she never opened her
eyes again.
But she was, she was in a coma,basically, yeah, so it all went
back to where it started andthey ended up um taking her to
baptist and, um, that was rightbefore Christmas.
(35:43):
So you know, when you're aChristian and you really really
want God to work a miracle, it'shard to stop thinking.
You know that, oh, you know,all things are possible with him
.
So we literally had to tell thedoctor you've got to tell us
when to stop hoping that this isgoing to get better.
(36:06):
And so basically we made adecision on it was December 21st
that we were going to take heroff life support, because we had
seen basically no signs of lifeever since that point where she
(36:27):
had opened her eyes and lookedat Tom.
She never came out of thatcoma-like state and you know.
So we had our pastors there andmy parents tom's parents were
both dead.
So, um, we had my parents thereand my son was there, my, my
(36:50):
daughter is hannah, is theyoungest and and she just she
didn't want to be there and thatwas okay.
But tom held her and she justpeacefully went yeah, like tom
said, from from her earthlyfather's arms to her heavenly
father's arms.
Right, that's exactly right thatis exactly right we had uh, we
(37:14):
had her funeral on the 23rd, sowe had christmas music at her at
her um funeral, at her funeral.
But I'll tell you something elsethat's always been kind of a
mystery to us.
So my cousin, mitch um, marriedinto a family that is one of the
(37:36):
funeral homes in our area andhe personally went down that
night to get Carly and bring herhome for the burial, and we had
before she died.
We wanted to be able to donateanything that could be used to
(37:58):
help another baby of Carly's,and so they were going to I
think they were going to try toto get her um heart valves.
Maybe I think is what they weretrying.
But in order to do that theyhad to have a blood type for her
, and so Mitch was there likeall night long.
(38:20):
It's like he waited for hoursand hours for them to turn carly
over to him and he said thatthey came out and told him that
they had run her blood sample orwhatever, all to labs all up
and down the east coast tryingto type her blood, and they
never could type her blood,which we found to be very
(38:43):
strange, they couldn't type herblood and so, um, they couldn't.
They couldn't use her.
You know donations, you know ofher body or anything because of
that, but we just decided thatyou can't type angel blood,
that's right, you're exactlyright, yes and you know, and we
(39:04):
called her our christmas angelbecause she really, you know,
she went to heaven for christmasshe did.
Speaker 3 (39:12):
I love that, yeah, um , so how old would she be today?
Speaker 2 (39:16):
so she would have been 16 this year yeah I
remember when that group of kidsbecause I have have some
pictures, you know, in thelibrary around my circulation
desk of Carly and inevitablysome of the kids that are in
there a lot, will ask me who sheis, and I remember that group
(39:37):
coming through that she wouldhave been in that class and I
think that made an impact onthem.
You know I was like, yeah, shewould have been in your class.
Speaker 3 (39:46):
And I think that made an impact on them.
You know, I was like, yeah, shewould have been in your class.
Yes, yes, that's.
Jake, that's my son Jake'sgroup.
Speaker 2 (39:57):
Yep, yep, um.
So how do you think it affectedyour two older children?
You know they were awesome.
We had um, we had prepared themto not have Carly come home, so
they, they kind of took thewhole, the whole stance that we
did that you know, any day withcarly is a good day.
They never were jealous andheaven knows that for two years
she got the bulk of theattention, um, they, they never
(40:21):
acted jealous.
Now, jordan, he was um goshabout.
He was, he was seven, sobetween fifth and seventh grade,
while she was there, and so hewas just getting interested in
gaming and so he spent aconsiderable amount of time in
his room playing games.
But he always was just.
(40:41):
He always, you know, had funwith her.
You know I said earlier thatshe didn't blink, like hardly
ever blinked, and I rememberwhen we brought her home, he um
tried to beat her in a staringcontest and I thought his eyes
were gonna fall out of his headbecause they were getting.
I was like you realize shedoesn't blink, you're going to
fall out of his head becausethey were getting.
(41:02):
I was like you realize shedoesn't blink, you're going to
lose this right.
So I mean, they always had ahad a good deal of time with her
, and the funny thing is is thatmy daughter, hannah, does not
like to read, and I'm like,please don't tell anybody, your
mother's a librarian.
Yes, please don't, yeah, but shedoes not like to read.
But that was what she did themost with Carly she um she, uh,
(41:26):
would turn the pages.
Carly would turn the pages forHannah as Hannah was reading a
book, like she'd get the pageready for, and Carly would flip
her hand and turn the page.
So they did a lot of that.
Um, but yeah they, they justenjoyed her she.
She was just so sweet.
You couldn't get aggravatedwith Carly, she was just fun to
(41:47):
be around.
But, as a consequence, both ofmy children are very much
engaged with people withdisabilities.
I mean they have never shiedaway from them, you know, and
they hate the word retarded asmuch as I do, especially after I
explained to them that thattheir little sister could have
(42:10):
been called that.
So they're very cognizant ofhow special needs children are
treated with a group.
Whenever he was at Appalachianthat worked with their special
needs kids adults there atAppalachian to help them do
(42:32):
drama, so he specifically workedwith that special needs group
as well as a group at the Greenroom um theater too, so he
always enjoys and tries toincorporate the, the children
that have special needs, and umhannah would always, you know,
(42:52):
grab, grab kids by the hand thatum needed some help.
She went to special olympicswith the kids at our school
whenever she was in middleschool.
She enjoyed doing that, uh-huh.
I think it definitely made themmore compassionate, yeah.
Speaker 3 (43:10):
I would agree.
Speaker 2 (43:11):
For people with differences.
Speaker 3 (43:13):
Yeah, my mother.
So my uncle he was specialneeds as well and my brother and
I.
We were fighting as brothersand sisters do, and one of us
called the other the R word.
Oh yeah and uh, mama, oh, shecaught on to both of us and told
(43:34):
us we are never allowed to saythat word.
Speaker 2 (43:37):
No.
Speaker 3 (43:37):
And that was just something that always stuck with
me and I can pass that down tomy boys too, because they got to
know their uncle Johnny andloved him like I did, and so
that is just that's oneunacceptable word in my house as
well.
Oh, yeah, for sure, yeah, sowhat advice would you give to
parents who are coping with theloss of a child?
Speaker 2 (44:01):
You know, I, um, I w, I'm so thankful that we had the
time that we did with Carly.
I would not trade it foranything.
Um, I'm just so glad that wehad two years and four months
with her.
That was such a blessing.
Um, you know, and, and I'veoften thought, you know, I wish
(44:22):
she had been, I wish she hadbeen whole.
You know, I wish she could have.
You know, I wish she had been,I wish she had been whole.
You know, I wish she could havestayed with us, I wish she was
with us.
Now I wonder what kind ofperson she had.
So much personality.
You know, I have no.
(44:46):
Just enjoy every single second.
It's so precious, it's so, andif and if you have a perfect
child, be so thankful.
There's so many little thingsthat can go wrong.
I mean, I had no idea until Iwas facing that myself, but it
would have been a very easything for me to do to just want
(45:08):
to crawl under a rock and die,because that's how I felt.
I mean, it's like it's theworst thing to lose.
It's just not natural, it's notthe order of things.
We're supposed to go before ourchildren do, supposed to go
before our children do and youknow if it hadn't been for our
faith and each other.
You know, tom and I, I don'tthink it made us stronger and I
(45:30):
understand, you know there are alot of people that that that
doesn't happen that way, forthat that it it really rocks
their relationship.
But, um, but tom was my rock,we were, you know, we were each
other's and I had two otherchildren that I needed to be
there for and I just wasn'tgoing to check out on them.
They needed me too and theywere also hurting.
(45:52):
I think.
Gosh, I don't know it's, it'sso hard.
But our faith, I'll tell you,you know, we, the first time we
went to church other than thefuneral, was Christmas Eve.
My kids were with their dad andTom and I were by ourselves and
(46:14):
we debated it Should we go tothe candlelight service at 11
o'clock it was at night, reallate and should we go?
You know it was at night, reallate and should we go?
And it was kind of like rippingoff a band-aid, you know,
because church is the part, thatis the place where you really
should be right when you'regoing through something like
that.
But it also is the hardestplace to be, because so many
(46:37):
people want to love on you andyou know they, they know you and
it just keeps all thoseemotions.
Church is an emotional placeanyway, but it just keeps all
those things right there on thesurface.
But I think you know, cling toyour faith and your family.
Um, god has a plan and he he soused carly while she was here
(47:01):
on earth.
We just don't know what kind of.
I mean she brought more peopleto faith than than most of us do
in a lifetime.
I didn't even I mean one.
One more story about a personthat she affected.
There was a young guy who wasthe art teacher at our school,
at the, and he had some of thekids paint a mural of a ship
(47:27):
with a pirate on it, becausewe're the pirates in our lobby
and it's a beautiful mural andhe named it the ship that the
pirate was on the Carly B afterCarly and I and that was right
when Facebook was starting, so Ihad just gotten on Facebook and
that was the easiest way.
(47:48):
That and caring bridge were theeasiest way to keep people
updated on Carly, causeeverybody wanted to know what
was going on and that was theeasiest way to let them know.
And he posted on her caringbridge that that Carly had been
the one to bring him to faithbecause she had been such a
miracle.
I mean, everybody knew she wasnot going to make it, we were
(48:11):
not going to have her long, ifat all, and and she did, and she
was such a little miracle andhe was like I've never
experienced anything like thatbefore.
And so for her to have such aprofound effect on someone and
not even be two years old, Imean that's remarkable.
We just don't know what oursituation, what the people that
(48:36):
are watching us are seeing in us, and how we can be a testimony
without even doing anything.
You know, you are right, justin how we react and stay strong.
And that doesn't mean you don'tcry, because heaven knows I cry
all the time but, you know,being real and honest and and
(48:59):
just leaving yourself open forpeople to love on you and share
your faith and cling, to clingto your faith and yeah, I don't
know if that answered yourquestion.
Speaker 3 (49:11):
Oh, it does, Perfect, yeah.
So what do you do on those baddays that you still have?
Speaker 2 (49:18):
Oh gosh, you know I, you know I still we talk about
Carly all the time.
What might have been?
You know what she would havebeen like?
You know, we, we think aboutlike.
My grandmother died six weekslater and she and Carly were
just besties.
I mean, she, she also hadcancer and so my mom would keep
(49:40):
Carly two days a week while Tomwas working and they would go
down there and she would justlay in the bed with my
grandmother and just blah blah,blah, blah blah.
You know, just talk, talk, talktalk, just jabber, jabber,
jabber.
And my grandmother was sodevastated when Carly died, we
(50:02):
made a special trip by there,just like it's okay, it's okay
and she.
But she went with her six weekslater and I was.
That to me was such a comfort.
Oh yes, to know thatimmediately she had her buddy up
there with her in heaven, youknow, um.
So I don't know I still.
(50:23):
I mean it's a struggle.
I struggle going to the grave.
I don't like to think about herthere.
That's not the way I want topicture her there's.
You know, I don't know thatit's something you ever get over
, but I like to laugh about thegood times and remember the fun.
(50:43):
You know the, the joyful littlekid that she was.
I mean she just that's how Iget through, I guess is not
dwelling on the sadness of it.
That doesn't mean it doesn'thappen, and I give myself a
really, really good cry on herbirthday every year.
Speaker 3 (51:01):
Oh, do you yeah.
Yeah, on August 13th, that's myday to cry oh yeah, but most of
the time, honestly, don't, Itry to plan something fun so I'm
distracted right but yeah, yeahso I think hobbies are always a
good, a good way to deal withany kind of loss or just
(51:28):
anything that you're goingthrough you know, stress or
whatever so.
I want you to tell the audienceabout your new hobby.
Speaker 2 (51:35):
Okay, so my older kids are grown and gone now and
um, Hannah Hannah was my buddyand um she, we moved her to
Washington DC in January and I'mlike, what am I gonna do with
myself and all this time?
And and so I took a class overChristmas this past Christmas,
(51:56):
just online.
And so now I make fancy cookies, I decorate sugar cookies and
getting better.
And Tom bless his heart.
He was like well, I justfigured you'd spend more time
with me.
I'm like, oh sorry, Because I'mjust in this room all the time
(52:16):
every night and making cookiesand it's kept me very busy and
it's so much fun and I lovebeing able to do something that
makes people happy Makingcookies and it's kept me very
busy and it's so much fun and Ilove being able to do something
that makes people happy.
You know, yeah, it's always forsomething good a birthday or a
baby shower or somebodygraduating.
Speaker 3 (52:36):
You know, it's just, it's fun and I enjoy the
creative process of it, tryingto make everything look nice and
also taste good yes, they tastewonderful, and you guys should
see, like she's so talented allthe I don't know just the way
she could take this ice and turnit into I don't know what's
(52:59):
some of the things you've madestacy.
Oh gosh, um the trolls, I thetrolls, I love the trolls.
Oh, the little gnomes, yeah,I'm sorry.
Gnomes, yes, yeah.
Yeah.
Speaker 2 (53:09):
I love the gnomes.
That was one of the firstthings I did.
You know, I was just I don'tknow.
I tried sewing and I was so badat it you know so.
I and I love to cook, and so,um, and I like to entertain
people, and I mean not likeentertain them like with singing
dancing, but like having peopleover and feeding them things,
and so this was a really goodfit for me, and now I just need
(53:32):
to retire from teaching so I cando this full time that sounds
like a great plan.
Yeah, trade middle schoolers forcookies there you go yeah hey?
Speaker 3 (53:46):
well, I sure do.
Thank you for coming on theshow and and opening up and just
spending time with us oh yeah,no problem.
Speaker 2 (53:55):
No problem, I enjoy talking about carly it's.
I can't do it without a smile,a tear and a smile right, right,
exactly, exactly Well, thankyou very much.
Speaker 3 (54:07):
Thank you for listening to this episode of
Beyond Existing.
Many thanks to my guests andalso to Crystal Webb and her
middle school jazz band forsupplying the music when the
Saints come marching in.
If there's something that youwould like to share with me or a
topic that you would like tohear discussed, there's a link
(54:27):
in the show's description, sojust send me a text.
Please share the show withfriends and family To help grow
the podcast, and be sure tofollow wherever you listen to
podcasts.
Today I want to welcome a special friend.
She and her husband experiencedtremendous loss but at the same
time, their light shines bright.
I've asked her to come on thepodcast to share her story of
surviving the loss of a child.
Stacey is one of the sweetestand most kind-hearted people
that I know and I'm so glad youget the opportunity to hear the
(00:37):
love, courage and faith that haskept her going.
Stacey, thank you so much forsharing your testimony and
opening up oh, my pleasure.
First I want to start with alittle bit of history about you
and Tom.
Okay, All right.
Speaker 2 (00:55):
So Tom is eight years older than me and he joined the
church that I go to, st Peter'sLutheran Church.
That's the church I grew up at,and he joined when he was a
teenager and so I watched himfrom a distance because he was
in a totally different age groupfrom me, so I didn't really
(01:15):
know him very well, but Iadmired him from a distance.
We'll put it that way.
Our paths crossed again.
I was married to someone elseand singing as a substitute in
our contemporary band at church,and so you know I had two
(01:43):
children when we met again andthen consequently went through a
kind of a rough divorce and westarted dating soon after that.
Yeah, I always wondered why henever married and he was
actually 40 when we married.
So he was fabulous aboutstepping into a ready-made
family, because I had afour-year-old and a
nine-year-old son and daughterand he just made a great stepdad
(02:06):
.
They've been very blessed tohave him in their life.
Speaker 3 (02:10):
That's awesome.
So how long had you guys beenmarried when you became pregnant
with Carly?
Speaker 2 (02:18):
About not quite two years.
Yeah, not quite two years,because we got married in 2004.
Actually, it was just right attwo years when she was born.
Speaker 3 (02:32):
Okay, yep, okay.
So now explain to us a littlebit about your pregnancy.
Speaker 2 (02:40):
Okay.
So you know, as far as we knew,everything was great, um,
except, you know, as as we wentthrough the pregnancy they kept
saying and they didn't soundlike it was a really big deal
they just started talking abouthow her growth wasn't on track.
She was small, she wasmeasuring small and, um, never
(03:02):
really made a big deal.
I'm sure she'll catch up.
You know nothing like that.
We first knew that there was aproblem.
There was a friend of mine atchurch that was also pregnant,
who had run into someone who waspracticing that was right when
4D ultrasounds were coming out,you know, when you got the
(03:23):
really clear picture of thebaby's face for the first time.
And she knew someone that wastraining on a piece of 4D
ultrasound equipment in aneighboring town, like 20
minutes away or so.
And so she hooked us up withthis girl and we didn't have to
pay for it because she waspracticing on it.
(03:43):
And so we went up on a Sundayafternoon and so we got, you
know, she got me all hooked upand everything, and immediately
she stopped and she said whatare they saying about her head?
And I'm like nothing other thanthat she's just measuring small
all over.
And she said we're stoppingright here, and who's your
(04:08):
doctor?
And she got like, on the thedoctor on call number.
She called my physician'soffice and asked the operator at
the hospital to put her intouch with my doctor and she
said this is what I see, youneed to get them an appointment
tomorrow at Baptist.
And so my my doctor, dr Faroukshe was fabulous through all of
(04:33):
this.
Um, she did, she pulled somestrings and we got.
We had an amniocentesis the verynext day, which just happened
to be my birthday at Baptist totake a look.
And you know they thought thatmaybe they were preparing us to
hear things like she may haveDown syndrome and things like
(04:54):
that.
So we were kind of lookingaround at that and preparing
ourselves mentally for, you know, for a Down syndrome child,
which was great, you know, wedidn't care, yeah, so that that
was really our first indication.
Then, shortly after that, theyhad me do an MRI and that was
(05:16):
miserable because I was so I mymy reflux and and indigestion
was so bad that anytime I waslaying flat I just felt like I
was having a heart attack, andso just the test itself was very
difficult and that was when,you know, they had my stomach
under the MRI and that's the onethat takes like cross sections
(05:40):
of whatever they're imaging, sothey could kind of see inside
and slice it, look at it inslices and, um, little did we
know, because that was, that wasa miserable time for me, but
little did we know they weretrying to chase us down after we
left, because they said thatevery time, the because it was
(06:02):
very loud is that every timethat machine whirred, carly
jumped, you know.
So almost all of their imageswere blurred, but they, I guess
they had enough to see what wasgoing on and they didn't have us
come back and do that again.
So that's when we got thediagnosis of hydrinencephaly and
(06:28):
I know that sounds familiarbecause you've probably heard of
waterhead babies.
Right, that's what they're.
They're being referred tohydrocephaly, which is very
similar.
The difference is that ahydrocephaly or waterhead baby,
that water from the spinal fluidis constantly moving like it's,
(06:50):
it's filling up and and justconstantly draining out, and a
lot of those kids have to haveshunts put in to drain that
spinal fluid off.
But Carly's was different inthe sense that the water that
was in her head never moved Likeit was.
They told us.
It was like a placeholder, likeit was taking the place of
(07:12):
where her brain should have beenand it just stayed constant all
the time.
So there was no need for ashunt to drain it because it was
not continuing to fill up.
And as far as what caused it,they just they had no idea.
They were guessing.
I think the one that theywanted to go with was that she
(07:32):
possibly had a stroke in uteroat about 12 weeks.
So that's about the point theysaid that her brain had
developed to, and I think that'swhere they got that from.
But yeah, the prognosis was notgood.
(07:54):
We went to Baptist and everytime we went, I remember on our
trip down there, it was about anhour long drive down there, and
so Tom and I were like allright, what are we praying for
this time, you know?
Cause we didn't really know,you know, what to expect, what
to focus on, and it seemed likeevery time we went the news was
(08:16):
bleaker and you know we werejust like oh, this is just no
good news, you know.
And so I remember one time Iwas just like let's just play
pray for grace, let's just justfor grace and mercy, just to get
us through this.
But, um, the doctor that wasthat was dealing with us in
Baptist didn't have much of abedside manner and, um, at one
(08:40):
point he he said, you know,she's probably not even gonna
survive birth, you know she'll,she'll be a vegetable.
Um, you know, I really thinkthat you should, should think
about aborting it.
And he called her an it and Ijust, oh, that was such such a
turnoff for me, oh, and I'm likewe will.
(09:00):
We will not consider that, youknow, and and her name is car
Carly, we'd already named her,she has a name and that will not
be a course that we will bepursuing.
And they wanted to set up abirth plan.
I would deliver at Baptist andthen, whenever Carly got here,
if she survived birth, they weregoing to whisk her away and
(09:23):
take her to another buildingwhere, like the children's
hospital was.
So I wouldn't even get to seeher or spend time with her
really until, you know, until Ihad recovered or whatever.
So none of that sounded verycomforting to either one of us,
(09:43):
and so we were like, you knowwhat, if we're, if we are going
to have to deal with this as adelivery, we just want it to be
at home with a doctor that wetrusted and knew and loved.
I mean, she had delivered bothof my other children, dr Farouk,
and she was fantastic.
She met us at a park near herhouse on a Saturday, brought us
(10:06):
a vase of flowers that she hadgrown at her house, and we sat
there and cried and talked andcame up with a birth plan.
You know how we were going tohandle Carly and I was just you
know, so comforted by the factthat she I knew she cared you
(10:29):
know right, yeah, carly was notan it to her exactly exactly,
yeah.
So so that's what we decided todo.
And you know she prepared usfor the worst.
She said you know she's verysmall.
She prepared us for the worst.
She said you know she's verysmall, there's a possibility
that she will come out in pieces.
I mean, it was just not apretty picture.
(10:53):
So you know God teaches youlessons through that, because I
tended to get a little bitter atthat point.
I know you've had two kids, soyou understand that when you're
pregnant, it seems likeeverybody around you is pregnant
.
Like everywhere you go you seesomebody else that was pregnant
and I just looked at these otherwomen and I'm like something's
(11:16):
wrong with my baby and she'sgoing to have a perfect baby.
Of course, I didn't know that,but you know how your brain
thinks whenever you're goingthrough something like that.
But I tell you what God got myattention, um, this one
particular time.
I remember um he was, he wasgoing to teach me a lesson,
(11:38):
because he'd about heard enoughof my thoughts along those lines
.
But we were, we were out to eatit was just tom and I the kids
weren't with me and um, we werelooking over and there was a
very young couple.
I mean they look like barelyhigh school age and she was
pregnant and I was like look,look, how young they are.
(11:59):
They can't possibly be goodparents.
You know they.
You know, you know how youjudge people.
You see judgment of people,right.
I was like you know, that'sjust not fair.
That she's gonna have, she'sgonna have this perfect baby and
there's something wrong withmine.
And and then they reached overand they held hands and they
(12:20):
prayed before they ate and I waslike that was such a lesson for
me.
Oh yeah, yeah.
I was like don't stand injudgment of other people just
because the situation you're inis not perfect yeah, hey, we've
all been there, right, so we'veall passed that judgment.
Well, that ended those kinds ofthoughts, let me tell you,
(12:42):
because I had learned my lessonby not you know, judging someone
else's situation based on whatI was going through.
So, yeah.
Speaker 3 (12:53):
So you gave, so the day came.
Speaker 2 (12:56):
Yeah, the day came and you know that was that was
really.
I mean, I'd been through twoother births and and the
contrast to between those twoand this one was completely
different.
It was you know how you go, andyou've got this happy, excited
feeling and we didn't go in withthat.
(13:17):
We were like, okay, we're justgoing to make the best of a bad
situation.
And you know, the plan was thatthat that if she survived birth
, she probably wasn't going tolive long and we would just hold
her until she died.
That that was the plan, right.
And we had prepared, you know,jordan and hannah, my, my
(13:40):
children for that possibilitythat we would not be bringing
Carly home.
And so it was kind of it was apretty somber occasion, very
different from we didn't.
We didn't even really preparevery well.
They had put me.
(14:02):
They had put me on bed rest andI was taking like weekly steroid
shots and they had been comingto the hospital and hooking me
up to machines so that theycould monitor her every week.
And so for the last, for goshhalf of my pregnancy, I was on
bedrest and it was prettydepressing to sit around and not
be able to do anything.
And my parents and Tom, theywere just like, okay, we're just
(14:22):
going to paint her room, we'rejust going to paint her room and
get it ready, you know, as ifshe's coming home.
And so they just tore into thishouse while I just sat here and
watched everything and um andgot ready good, that's what I
was gonna ask was about anursery or yep yep, yep, matter
of fact, that's the room I'm inright now.
(14:43):
So, yeah.
So, um, yeah, they did that andwe didn't.
We didn't really have clothes,it was.
It's really kind of awful howunprepared we were because we
weren't giving God enough credit, you know, I mean he is the God
of miracles and we should, weshould have known better, um, um
(15:03):
, but the same girl that, um,well, let's get to the birth,
okay.
So so we get carly there andshe I mean dr farouk is like you
know, this is this may take awhile to get her out.
No, she just popped right outlike nothing, that easiest birth
ever, yeah, and and she looked,I mean, you know, she, she had
(15:25):
some things going on that lookeda little different and we can
talk about that if you want to.
But I mean, her Apgar score waswonderful, I mean she was doing
great.
But the plan was for them tojust wrap her up and hand her to
us.
And you know, they called inour pastor.
We're lutheran and we wantedher to be baptized if at all
(15:49):
possible.
So he came in and baptized herwith water from a dixie cup.
So we all kind of had a laughabout that.
But, um, he came, he came in acountry song, baptized from a
dixie cup.
At least it wasn't a red solocup, it was a little it's like
one of those little bathroomwater cups, yeah, yeah.
(16:12):
So, um, he came in and baptizedher and you know she just kept
hanging around.
You know she was, she waslooking around and new big old
eyes and, you know, just seemedvery alert.
She's very quiet.
She didn't make any soundscoming out, not making a whole,
but I mean, like I said, herscores were good.
They were measuring her everylittle bit.
(16:32):
They're like she's great, youknow.
And they're like, well, what doyou want to do?
And I'm like, well, if she'sgonna hang around for a little
bit, let's clean her up.
Can we?
And and get the family in here?
Because, you know, so they knewshe'd been born.
They brought my parents and mykids in and so they got to see
(16:53):
her and she weighed right atfour pounds, I want to say three
pounds, 14 ounces.
I mean she was tiny, yeah,absolutely tiny, and a normal.
But she was 40 weeks.
I mean they I went full termwith her.
So, um, you know, usually whena preemie is born, they'll make
(17:18):
them stay in the hospital untilthey reach a certain weight.
And, um, I was there for liketwo or three days and she was
good and they basically saidwell, you know, just take her
home and love her.
It was the strangest thing.
I mean, they didn't expect herto live.
They're like she's just takeher home.
(17:40):
They sent us home with a DNRlike a do not resuscitate order,
which was awful.
They wanted us to have that inplain view and I remember that
thing was like for a couple ofweeks tacked to our refrigerator
and I walked by right and aftera few I'm like I, I don't want
anything to do with that like weum, we um threw that away
(18:05):
fairly quickly, but there weresome.
Really, I mean you could seeGod's hand just from the very
beginning of everything,obviously, I mean she stayed, I
mean she was, she was good andthey sent her home with us.
But at the hospital, you know,once you give birth, then it
goes to the doctor, thepediatrician doctor, and so they
(18:29):
had her in the NICU, um, and Imean they would bring her to us
all.
I mean we got to keep her inthe room a good bit, but, um,
there was a doctor that had puttogether a birth plan, you know
that kind of picked up after DrFarouk was done with me.
Then he picked up and heimmediately wanted to put a
(18:50):
feeding tube in her and we were,you know, pretty much told that
that was going to be apermanent fixture.
I mean like she would need afeeding tube if nothing else.
Um, and a nurse that was in theNICU lied to him basically and
said um, before you do that, theparents want you to try her on
(19:11):
a bottle.
And we never had thatconversation.
I was going to say you nevertalked to that nurse.
No, we never talked to thatnurse.
She just basically cameafterwards and told us what she
had done and she's like I hopethat's okay with you, that's
great, because she latched ontoa bottle immediately.
Speaker 3 (19:29):
How much?
How was her eating?
Was it like a normal child,normal baby?
Speaker 2 (19:34):
Yeah, I mean she ate regularly.
I mean, you know, when theysent her home with us, well,
they also.
Okay, let's back up a minutethey also did like a hearing
test on her that was based onbrain waves, at the hospital
before they sent her home, andof course, she failed miserably
because with the hydridencephaly they estimated that
(19:59):
she had about 10% of her brain.
So she basically they describedit to us as like an ice cream
cone.
She had the brain stem, whichwas the ice cream, the cone part
, and then she had a partialfrontal lobe, which is where
personality and things like thatlive.
(20:20):
That's where that's that partof your brain.
But other than that, it wasgone, like 90% of her, it was
fluid, it was nothing but awater sack, basically, for the
rest of it.
And so, um, after we got home,the hospital called back asking
whether or not they wanted wewanted them to do that hearing
(20:42):
test again, and I said, well, isit the same test that you gave
her at the hospitals, based onbrain waves?
And he said, yes, and I'm like,well, she's going to fail it
then, because you know, no brain, no waves.
So, but I knew, we both knewthat she could hear even before
she was born, because my husbandis a musician and he plays the
(21:07):
bass guitar and he played in thecontemporary band at our church
and other bands.
But he loved to play AlisonKrauss and he would crank it up
and that was the same room inour bedroom where my computer
was that I worked on, and so hewould crank it up and play his
music, alison Krauss, and everytime Alison Krauss came on she
(21:29):
would just go nuts inside of mejust kicking.
I knew she could hear andthat's the reason why the images
were so bad that they took anMRI, because every time that
machine whirred she was movingbecause it was startling her.
But we knew for a fact that shecould hear because she startled
whenever our dog barked oh,yeah, so we knew that was a
(21:53):
thing.
Yeah and uh allison krauth.
Speaker 3 (21:55):
She's like one of my favorites ever.
I mean, oh, I know, her voiceis so magical and I know she
does yeah, and when I taught myfirst two years straight out of
college, I taught in a littletown called Waynesboro, georgia.
It's right outside of Augustaand it's the height of like of
90s rap and stuff and that'swhat they were really into.
(22:18):
But I would play Alison Kraussand the room would calm and,
like those kids, they enjoyedlistening to her.
Speaker 2 (22:26):
Oh yeah.
Speaker 3 (22:27):
It was just so funny and I love hearing that Carly
would respond to allison.
Speaker 2 (22:32):
Yeah, allison krauss, yeah, and we've since seen her
in concert.
But I can't think about allisonkrauss without thinking about
carly's reaction yeah, yeah, Iunderstand.
Speaker 3 (22:44):
Um, so you had mentioned some miracles along
the way, how God took care ofyou and Tom.
Can you expand a little bit onthat?
Speaker 2 (22:55):
yeah, it was just.
You know, it was kind ofamazing.
I'm not a very, and I should be, but I've never been a vocal
person about my faith.
I mean, I can, I can talk aboutit, but I don't approach people
and talk to strangers about it,like I.
Like I know that we're supposedto do, but Carly really didn't
give us a choice.
(23:16):
Um, and that's definitely onething that Tom and I both
learned is that you know, therethere are people that are are
hungry for, for a miracle, Iguess.
And you know, every time wetalked to somebody about Carly,
we talked about what a miracleshe was and how she wasn't
supposed to be here.
But he put people like thatnurse in the NICU unit.
(23:40):
He put people in our path thewhole time that she was there
and just some of the strangestthings would happen and we would
just sit there and look at eachother and shake our heads over
it.
Um, there was another, anothernurse while Carly was in the
NICU and she would come by onher lunch breaks and pray over
(24:02):
all the babies in the NICU unitand I just thought that was the
coolest story.
Um, um, I don't know that weever met her, we just heard
about it, but um, but then wehad a ton of specialists that
saw Carly and I learned a lotabout how the brain is supposed
to work when uh, you know, in ababy and and what they're
(24:24):
supposed to be able to do, andthings that we just take for
granted when we have normalchildren.
We don't even know it's a thing.
Um, I mean, we knew along theway that that there were, there
were things that were differentabout carly, because with the
specialists they would, theywould tell us things and try to
figure out, you know, if, didshe have a syndrome?
(24:46):
What was it that we weredealing with?
And there was never reallyanything conclusive.
But we saw things along the way, like, for instance, they
decided that she had somethingcalled cortical visual
impairment, cvi, and the waythat they explained it to us is
that it was like carly waslooking through a piece of Swiss
cheese, so she did not have anyperipheral vision and she was
(25:10):
only able to see just pockets ofthe picture that was in front
of her.
So she had special glasses forthat and we went about an hour
away to a specialist and theywere the ones that diagnosed her
and gave her the, theprescription, and we brought it
(25:30):
back to our hometown to have itfilled at a place called
treasures vision, and we had, wehad.
We just knew that she wasreferred to us because she could
do those kinds of glasses.
She had that capability and itwas just a lady that owned her
own her own glasses shop and, um, so we met her and we told her
(25:53):
Carly's story and she would notlet us pay for those glasses.
She gave those glasses to usand they were so funny.
They were, um, they were like ahot pink plastic plastic
glasses and they we had a bandthat would hold them on her head
, and it was kind of difficult,because one of the little things
(26:13):
that Carly had different abouther is that she had kind of an
underdeveloped looking ear onone side and it was a little
lower than it should have been,than it should have been, and so
the glasses were a little wonky.
Anyway, because it was, shedidn't really have but one ear
in the right place to hold it upfor one thing, but she hated
(26:35):
those things.
As soon as you put them on herface, she would reach her little
hand up there and grab them andpull them off.
It was a constant battle, yeah,so, um, that that was just one
example of someone.
Um, we, we would run intopeople in the stores and Tom was
(26:56):
.
We decided I mean we could havetreated her like, uh, like we
needed to cocoon her and wrapher in a little bubble and not
let her engage in life at all.
Yeah, but we just we just kindof looked at every day with
Carly as a gift and so we just,we just took her everywhere.
Yeah, we wanted, we wanted herto be exposed to as many people
(27:19):
as possible, which I know thatsounds especially in the age of
COVID.
Speaker 3 (27:23):
Yes, how could?
Speaker 2 (27:24):
you expose her to all those germs.
But you know we were like.
Speaker 3 (27:27):
You know what she's here, let's, let's let her live
as much as possible, especiallysince she wasn't even supposed
to make it past birth Exactly.
Speaker 2 (27:36):
Exactly so we took her everywhere and, tom, we got
this little sling.
That's the only thing.
I mean.
It was just like I don't knowsomething.
He wore across his shouldersand it was just a sling, I don't
know something.
He wore across his shouldersand it was just a sling, and she
was so tiny and we would just,he would just carry her on his
hip that way and she was down inthis.
You'd open up the folds of thislittle sling that she was in
(27:58):
and one of the things that shedidn't do was blink.
A lot Occasionally she wouldblink, but that was one of the
reflexes that just that kind ofdeveloped over time.
And, um, so you will, you wouldlook in the in that little sling
, and all you saw were thesehuge eyes staring back at you.
(28:18):
And I remember one oldergentleman in a store.
He was like what have yougotten there?
And um tom said well, it's ourbaby.
And he would.
He would look down there.
He said it looks like a littlebush baby.
You know how they speak.
They go ask what you.
Somebody else came it's likewhat you got in there, a sugar
glider?
It's like no, it's not a sugarglider, you know.
So you know all these people.
(28:40):
It was like she was.
We said she was a magnet people.
Yeah, like what you got in yoursling, you know, they would
just come up to us to know whatwas in the pouch.
So we would tell Carly's storyover and over and over again.
I remember taking Tom to adoctor's appointment and she was
with me and there was this, Idon't know, this crusty old
(29:03):
gentleman he looked very grumpythat was sitting with us in the
waiting room.
His wife was there for somereason and it was just Carly and
I out there and I have no ideawhat made him want to do this.
But he said can I hold her?
I'm like sure and she had thisability whenever you were
(29:25):
holding her that she had yourundivided attention when she
never took her eyes off of yourface.
She loved a person's face thereand you should have seen she
just like it was like some kindof joy came over this old grumpy
guy holding carly because shemade him feel so special.
(29:47):
And she, she had a habit oftaking both of her hands and
putting them on the sides ofyour cheek and holding your face
still so that she could look atyou, and she was doing that to
him and it was the coolest thing.
She just, she was just likepure joy.
Speaker 3 (30:06):
She really was all the time, oh my gosh she was so
sweet how did it change hisdemeanor?
Speaker 2 (30:13):
he just he lit up and he was just talking to her and
whenever you talked to carly,she was so serious about
listening to everything you saidand when you talked to her she
would smile.
Um, she smiled a lot and um,she was never grumpy, never
fussy.
Um, if you walked by her, likeyou had her I don't know laying
(30:35):
on laying down somewhere whileyou were doing something, as
soon as you walked by, both armsflew straight up in the air
like pick me up and it was.
It was really hard not to pickher up.
She got she got a lot ofattention and holding.
Speaker 3 (30:50):
That's for sure.
Oh she did, oh she did.
Speaker 2 (30:53):
Yeah.
Speaker 3 (30:56):
So how old was she when she left us?
Speaker 2 (31:00):
So she was two years and four months old and she
topped out at 17 pounds.
17 pounds, 17 pounds that's asbig as she ever got.
Yeah, whenever they sent ushome, they also assigned us a
hospice nurse.
She was fantastic.
Tom had just finished EMTtraining.
(31:21):
You know, god works all theselittle things along the way.
You look back and you're like,well, that's why, yeah, but it
wasn't something he stuck with.
He didn't, he didn't likehaving to make those snap
decisions, you know, and justspur of the moment, and so emt
was not for him.
But that training sure came inhandy when we had carly um.
(31:42):
There was one point and we'dalready thrown thrown the DNR
order away long ago.
But there was one point whereshe started like turning blue
and we couldn't, we could.
It's like she was fading, wecouldn't get her back and we
called her hospice nurse and shecame flying over to our, broke
(32:03):
all kinds of speeding laws andeverything to get to us, and by
the time she got there, you knowTom had gotten her back, and
that was the only time that wereally came close to losing her
until the very end.
But, yeah, god, he had Tom,take that EMT training so that
(32:24):
he would know how to handleCarly.
Speaker 3 (32:27):
Yeah.
Speaker 2 (32:28):
Yeah.
Speaker 3 (32:32):
So what changed in her health?
How did her decline start?
Speaker 2 (32:35):
well, um, you know, we were not exactly sure what
caused it.
The doctors supposed that whatcaused it to start with whether
it was a stroke or whatever,whatever caused it to happen the
first time possibly happenedagain, and I mean I know I had
(33:02):
had a cold, but nothing major,it was right.
Um, it was right aroundThanksgiving and she stopped
eating and she had therapists.
She had three therapists thatcame and did things with her um
each week and, um, like they hadjust fitted her for something
(33:23):
they were calling a cloud walker.
She didn't have, um, a lot ofmuscle strength and so she was
pretty like a limp kind of likea limp noodle and um, so they
had just put her in this thingcalled a cloud walker that if,
if she made any kind of movewhatsoever to walk, it would
(33:46):
pick up her foot and move it forher.
So she had all kinds of niftylittle things like that.
But so she had only been inthat thing like three times and
we were really hopeful.
You know that this wassomething that was going to be
good for Carly and you know whoknows what we would be able to
do with her down the road.
(34:07):
We were very hopeful of that.
But she got sick and she justnever got better and she stopped
eating and she started cryingand you know, I was just so
afraid that something washurting in her head, hurting in
her head, and the doctor thatsaw her the whole time that she
was anytime like she.
(34:33):
She would treat her for a, foran ear infection Anytime that
she was fussy because her earswere so small she could not see
inside her ear canal.
But she just kind of assumedthat maybe that's what it was
and would treat her that way.
And we took her to the doctortwice that week.
But her regular doctor thatknew her history and had treated
(34:58):
her all this time was onvacation and so I mean not that
I'm blaming it on that, but butnobody really knew what to do
with her and we were just, wefelt pretty helpless and she
ended up.
We ended up taking her to thehospital and I had gone home to
get a shower and while I wasgone she opened up her eyes and
(35:19):
Tom was there and she looked athim and she never opened her
eyes again.
But she was, she was in a coma,basically, yeah, so it all went
back to where it started andthey ended up um taking her to
baptist and, um, that was rightbefore Christmas.
(35:43):
So you know, when you're aChristian and you really really
want God to work a miracle, it'shard to stop thinking.
You know that, oh, you know,all things are possible with him
.
So we literally had to tell thedoctor you've got to tell us
when to stop hoping that this isgoing to get better.
(36:06):
And so basically we made adecision on it was December 21st
that we were going to take heroff life support, because we had
seen basically no signs of lifeever since that point where she
(36:27):
had opened her eyes and lookedat Tom.
She never came out of thatcoma-like state and you know.
So we had our pastors there andmy parents tom's parents were
both dead.
So, um, we had my parents thereand my son was there, my, my
(36:50):
daughter is hannah, is theyoungest and and she just she
didn't want to be there and thatwas okay.
But tom held her and she justpeacefully went yeah, like tom
said, from from her earthlyfather's arms to her heavenly
father's arms.
Right, that's exactly right thatis exactly right we had uh, we
(37:14):
had her funeral on the 23rd, sowe had christmas music at her at
her um funeral, at her funeral.
But I'll tell you something elsethat's always been kind of a
mystery to us.
So my cousin, mitch um, marriedinto a family that is one of the
(37:36):
funeral homes in our area andhe personally went down that
night to get Carly and bring herhome for the burial, and we had
before she died.
We wanted to be able to donateanything that could be used to
(37:58):
help another baby of Carly's,and so they were going to I
think they were going to try toto get her um heart valves.
Maybe I think is what they weretrying.
But in order to do that theyhad to have a blood type for her
, and so Mitch was there likeall night long.
(38:20):
It's like he waited for hoursand hours for them to turn carly
over to him and he said thatthey came out and told him that
they had run her blood sample orwhatever, all to labs all up
and down the east coast tryingto type her blood, and they
never could type her blood,which we found to be very
(38:43):
strange, they couldn't type herblood and so, um, they couldn't.
They couldn't use her.
You know donations, you know ofher body or anything because of
that, but we just decided thatyou can't type angel blood,
that's right, you're exactlyright, yes and you know, and we
(39:04):
called her our christmas angelbecause she really, you know,
she went to heaven for christmasshe did.
Speaker 3 (39:12):
I love that, yeah, um , so how old would she be today?
Speaker 2 (39:16):
so she would have been 16 this year yeah I
remember when that group of kidsbecause I have have some
pictures, you know, in thelibrary around my circulation
desk of Carly and inevitablysome of the kids that are in
there a lot, will ask me who sheis, and I remember that group
(39:37):
coming through that she wouldhave been in that class and I
think that made an impact onthem.
You know I was like, yeah, shewould have been in your class.
Speaker 3 (39:46):
And I think that made an impact on them.
You know, I was like, yeah, shewould have been in your class.
Yes, yes, that's.
Jake, that's my son Jake'sgroup.
Speaker 2 (39:57):
Yep, yep, um.
So how do you think it affectedyour two older children?
You know they were awesome.
We had um, we had prepared themto not have Carly come home, so
they, they kind of took thewhole, the whole stance that we
did that you know, any day withcarly is a good day.
They never were jealous andheaven knows that for two years
she got the bulk of theattention, um, they, they never
(40:21):
acted jealous.
Now, jordan, he was um goshabout.
He was, he was seven, sobetween fifth and seventh grade,
while she was there, and so hewas just getting interested in
gaming and so he spent aconsiderable amount of time in
his room playing games.
But he always was just.
(40:41):
He always, you know, had funwith her.
You know I said earlier thatshe didn't blink, like hardly
ever blinked, and I rememberwhen we brought her home, he um
tried to beat her in a staringcontest and I thought his eyes
were gonna fall out of his headbecause they were getting.
I was like you realize shedoesn't blink, you're going to
fall out of his head becausethey were getting.
(41:02):
I was like you realize shedoesn't blink, you're going to
lose this right.
So I mean, they always had ahad a good deal of time with her
, and the funny thing is is thatmy daughter, hannah, does not
like to read, and I'm like,please don't tell anybody, your
mother's a librarian.
Yes, please don't, yeah, but shedoes not like to read.
But that was what she did themost with Carly she um she, uh,
(41:26):
would turn the pages.
Carly would turn the pages forHannah as Hannah was reading a
book, like she'd get the pageready for, and Carly would flip
her hand and turn the page.
So they did a lot of that.
Um, but yeah they, they justenjoyed her she.
She was just so sweet.
You couldn't get aggravatedwith Carly, she was just fun to
(41:47):
be around.
But, as a consequence, both ofmy children are very much
engaged with people withdisabilities.
I mean they have never shiedaway from them, you know, and
they hate the word retarded asmuch as I do, especially after I
explained to them that thattheir little sister could have
(42:10):
been called that.
So they're very cognizant ofhow special needs children are
treated with a group.
Whenever he was at Appalachianthat worked with their special
needs kids adults there atAppalachian to help them do
(42:32):
drama, so he specifically workedwith that special needs group
as well as a group at the Greenroom um theater too, so he
always enjoys and tries toincorporate the, the children
that have special needs, and umhannah would always, you know,
(42:52):
grab, grab kids by the hand thatum needed some help.
She went to special olympicswith the kids at our school
whenever she was in middleschool.
She enjoyed doing that, uh-huh.
I think it definitely made themmore compassionate, yeah.
Speaker 3 (43:10):
I would agree.
Speaker 2 (43:11):
For people with differences.
Speaker 3 (43:13):
Yeah, my mother.
So my uncle he was specialneeds as well and my brother and
I.
We were fighting as brothersand sisters do, and one of us
called the other the R word.
Oh yeah and uh, mama, oh, shecaught on to both of us and told
(43:34):
us we are never allowed to saythat word.
Speaker 2 (43:37):
No.
Speaker 3 (43:37):
And that was just something that always stuck with
me and I can pass that down tomy boys too, because they got to
know their uncle Johnny andloved him like I did, and so
that is just that's oneunacceptable word in my house as
well.
Oh, yeah, for sure, yeah, sowhat advice would you give to
parents who are coping with theloss of a child?
Speaker 2 (44:01):
You know, I, um, I w, I'm so thankful that we had the
time that we did with Carly.
I would not trade it foranything.
Um, I'm just so glad that wehad two years and four months
with her.
That was such a blessing.
Um, you know, and, and I'veoften thought, you know, I wish
(44:22):
she had been, I wish she hadbeen whole.
You know, I wish she could have.
You know, I wish she had been,I wish she had been whole.
You know, I wish she could havestayed with us, I wish she was
with us.
Now I wonder what kind ofperson she had.
So much personality.
You know, I have no.
(44:46):
Just enjoy every single second.
It's so precious, it's so, andif and if you have a perfect
child, be so thankful.
There's so many little thingsthat can go wrong.
I mean, I had no idea until Iwas facing that myself, but it
would have been a very easything for me to do to just want
(45:08):
to crawl under a rock and die,because that's how I felt.
I mean, it's like it's theworst thing to lose.
It's just not natural, it's notthe order of things.
We're supposed to go before ourchildren do, supposed to go
before our children do and youknow if it hadn't been for our
faith and each other.
You know, tom and I, I don'tthink it made us stronger and I
(45:30):
understand, you know there are alot of people that that that
doesn't happen that way, forthat that it it really rocks
their relationship.
But, um, but tom was my rock,we were, you know, we were each
other's and I had two otherchildren that I needed to be
there for and I just wasn'tgoing to check out on them.
They needed me too and theywere also hurting.
(45:52):
I think.
Gosh, I don't know it's, it'sso hard.
But our faith, I'll tell you,you know, we, the first time we
went to church other than thefuneral, was Christmas Eve.
My kids were with their dad andTom and I were by ourselves and
(46:14):
we debated it Should we go tothe candlelight service at 11
o'clock it was at night, reallate and should we go?
You know it was at night, reallate and should we go?
And it was kind of like rippingoff a band-aid, you know,
because church is the part, thatis the place where you really
should be right when you'regoing through something like
that.
But it also is the hardestplace to be, because so many
(46:37):
people want to love on you andyou know they, they know you and
it just keeps all thoseemotions.
Church is an emotional placeanyway, but it just keeps all
those things right there on thesurface.
But I think you know, cling toyour faith and your family.
Um, god has a plan and he he soused carly while she was here
(47:01):
on earth.
We just don't know what kind of.
I mean she brought more peopleto faith than than most of us do
in a lifetime.
I didn't even I mean one.
One more story about a personthat she affected.
There was a young guy who wasthe art teacher at our school,
at the, and he had some of thekids paint a mural of a ship
(47:27):
with a pirate on it, becausewe're the pirates in our lobby
and it's a beautiful mural andhe named it the ship that the
pirate was on the Carly B afterCarly and I and that was right
when Facebook was starting, so Ihad just gotten on Facebook and
that was the easiest way.
(47:48):
That and caring bridge were theeasiest way to keep people
updated on Carly, causeeverybody wanted to know what
was going on and that was theeasiest way to let them know.
And he posted on her caringbridge that that Carly had been
the one to bring him to faithbecause she had been such a
miracle.
I mean, everybody knew she wasnot going to make it, we were
(48:11):
not going to have her long, ifat all, and and she did, and she
was such a little miracle andhe was like I've never
experienced anything like thatbefore.
And so for her to have such aprofound effect on someone and
not even be two years old, Imean that's remarkable.
We just don't know what oursituation, what the people that
(48:36):
are watching us are seeing in us, and how we can be a testimony
without even doing anything.
You know, you are right, justin how we react and stay strong.
And that doesn't mean you don'tcry, because heaven knows I cry
all the time but, you know,being real and honest and and
(48:59):
just leaving yourself open forpeople to love on you and share
your faith and cling, to clingto your faith and yeah, I don't
know if that answered yourquestion.
Speaker 3 (49:11):
Oh, it does, Perfect, yeah.
So what do you do on those baddays that you still have?
Speaker 2 (49:18):
Oh gosh, you know I, you know I still we talk about
Carly all the time.
What might have been?
You know what she would havebeen like?
You know, we, we think aboutlike.
My grandmother died six weekslater and she and Carly were
just besties.
I mean, she, she also hadcancer and so my mom would keep
(49:40):
Carly two days a week while Tomwas working and they would go
down there and she would justlay in the bed with my
grandmother and just blah blah,blah, blah blah.
You know, just talk, talk, talktalk, just jabber, jabber,
jabber.
And my grandmother was sodevastated when Carly died, we
(50:02):
made a special trip by there,just like it's okay, it's okay
and she.
But she went with her six weekslater and I was.
That to me was such a comfort.
Oh yes, to know thatimmediately she had her buddy up
there with her in heaven, youknow, um.
So I don't know I still.
(50:23):
I mean it's a struggle.
I struggle going to the grave.
I don't like to think about herthere.
That's not the way I want topicture her there's.
You know, I don't know thatit's something you ever get over
, but I like to laugh about thegood times and remember the fun.
(50:43):
You know the, the joyful littlekid that she was.
I mean she just that's how Iget through, I guess is not
dwelling on the sadness of it.
That doesn't mean it doesn'thappen, and I give myself a
really, really good cry on herbirthday every year.
Speaker 3 (51:01):
Oh, do you yeah.
Yeah, on August 13th, that's myday to cry oh yeah, but most of
the time, honestly, don't, Itry to plan something fun so I'm
distracted right but yeah, yeahso I think hobbies are always a
good, a good way to deal withany kind of loss or just
(51:28):
anything that you're goingthrough you know, stress or
whatever so.
I want you to tell the audienceabout your new hobby.
Speaker 2 (51:35):
Okay, so my older kids are grown and gone now and
um, Hannah Hannah was my buddyand um she, we moved her to
Washington DC in January and I'mlike, what am I gonna do with
myself and all this time?
And and so I took a class overChristmas this past Christmas,
(51:56):
just online.
And so now I make fancy cookies, I decorate sugar cookies and
getting better.
And Tom bless his heart.
He was like well, I justfigured you'd spend more time
with me.
I'm like, oh sorry, Because I'mjust in this room all the time
(52:16):
every night and making cookiesand it's kept me very busy and
it's so much fun and I lovebeing able to do something that
makes people happy Makingcookies and it's kept me very
busy and it's so much fun and Ilove being able to do something
that makes people happy.
You know, yeah, it's always forsomething good a birthday or a
baby shower or somebodygraduating.
Speaker 3 (52:36):
You know, it's just, it's fun and I enjoy the
creative process of it, tryingto make everything look nice and
also taste good yes, they tastewonderful, and you guys should
see, like she's so talented allthe I don't know just the way
she could take this ice and turnit into I don't know what's
(52:59):
some of the things you've madestacy.
Oh gosh, um the trolls, I thetrolls, I love the trolls.
Oh, the little gnomes, yeah,I'm sorry.
Gnomes, yes, yeah.
Yeah.
Speaker 2 (53:09):
I love the gnomes.
That was one of the firstthings I did.
You know, I was just I don'tknow.
I tried sewing and I was so badat it you know so.
I and I love to cook, and so,um, and I like to entertain
people, and I mean not likeentertain them like with singing
dancing, but like having peopleover and feeding them things,
and so this was a really goodfit for me, and now I just need
(53:32):
to retire from teaching so I cando this full time that sounds
like a great plan.
Yeah, trade middle schoolers forcookies there you go yeah hey?
Speaker 3 (53:46):
well, I sure do.
Thank you for coming on theshow and and opening up and just
spending time with us oh yeah,no problem.
Speaker 2 (53:55):
No problem, I enjoy talking about carly it's.
I can't do it without a smile,a tear and a smile right, right,
exactly, exactly Well, thankyou very much.
Speaker 3 (54:07):
Thank you for listening to this episode of
Beyond Existing.
Many thanks to my guests andalso to Crystal Webb and her
middle school jazz band forsupplying the music when the
Saints come marching in.
If there's something that youwould like to share with me or a
topic that you would like tohear discussed, there's a link
(54:27):
in the show's description, sojust send me a text.
Please share the show withfriends and family To help grow
the podcast, and be sure tofollow wherever you listen to
podcasts.
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