125 - Bloom Where You Are Planted - Meet Colbi

Today we share the story of a four-year-old girl from Mississippi named Colbi. Colbi’s parents, Megan and Joseph, will be joining us to shed light on their daughter's extraordinary medical journey, battling Combined D2-L2 HGA, and the unique challenges of being just the second documented case in the United States.

Episode Transcript

(00:01):
How would you describe Colby's personality ingive me three words, mom, to
describe Colby's personality. Yes, soI was thinking about that. I said
the first word, and I talkedto a couple of our nurses too,
because, like I said, theyare our extended family. The first word
that I said, and a coupleof them greed, was diva. I
said, my child might not verballytalk to you, but she tells you

(00:24):
in every way what she wants,when she wants it, and exactly how
she wants it, and if youdon't fix it, you're gonna have your
hands full. So diva is thebest description there. The second I would
say is resilient, like what she'sgone through and what she's been through,
and that she's overcome constantly every prettymuch mountain that's been thrown at her and
everything that she said that she wouldn'tbe able to accomplish. Not only has

(00:47):
she done it, but she's exceededit as well. And then the last
one I said for her, she'saffectionate. She loves to be loved on,
she loves to be snuggled, hell, just touch. That's why I'm
just sitting here in a hown.Her leg right now because she just loves
to have the physical touch. Youknow, not many people could ever be

(01:10):
described as being cuddly and also adiva, Yet that is where we find
ourselves with Colby our feature kiddo forthe month of November twenty twenty three.
I'm Seth Carnell and this is theGo Shout Love Podcast. If you haven't
seen her pictures yet or the video, go to our website, Facebook or

(01:34):
Instagram and take a look at fouryear old Colby and she is guaranteed to
brighten your day with her smile.Today we are talking with her parents,
Joseph and Meghan, who will guideyou through who Colby is all the way
from her medical journey, to herpersonality which is abundant, and to her
relationship with her sister Carson. I'vesaid it before, but sibling relationships are

(01:57):
one of my favorite topics when wemeet these families, and this conversation about
these sisters will leave your heart warmed. On top of that, Joseph and
Meghan are extremely welcoming, authentic,and they make this conversation a very easy
listen. Leading this conversation is JoshVeach, our executive director of Go shout

(02:17):
love. Now. We did thisrecording outside, so there are occasional noises
that you will hear in the background. Just as a heads up, and
since I know you will love thisepisode, please rate and review and share
this story. It is an easyway to shout love for Colby and her
family. And I do have toask add another word because one of my

(02:42):
nurses said it to me and Itold Paige about It was just she's contagious.
I just love that. Like,I don't know why that kept sticking
to me, but it did becausewhen you're just around her, she is
her joy that she radiates and herlove that she radiates even when she wants
to sleep through everything because being aheader. But that goes back to the
diva. Just because you want herto do something doesn't mean she's going to

(03:04):
do it. It means I'll doit when I want to and how I
want. You're going to have herway. Absolutely every time, Well I
saw a sign up front, doesn'tit say diva? Yes? Yep,
we've been kind of calling her thatfrom the get go. She's just a
little diva. So you're just kindof giving people heads up, this is
what you're going to get yes,yes, this is it. Like she'll
if you don't accommodate to her,then you might as well not hang out

(03:30):
for a second, take a littlebreak. Okay, Dad, your turn.
Three words? Three words to describePulbe's personality. Wow, Well,
she still one of mine. Withresilient, definitely, just looking back at
the things that she's been through andthe things that she's overcome, you know,
the things that that that she wasnever supposed to do, you know,

(03:55):
and that list keeps keeps growing.Definitely, Strength is right there with
with resilience. You know. Itreally really put things into perspective, you
know, as to the kind ofthings that we complain about on a daily

(04:17):
basis, you know, and thethings that we that we stress about,
you know, to think about thethings that she's been through and and the
things that she's overcome, it justreally puts things into perspective. And then
man, I was I was reallyright there with you. Affectionate was a
good one, but mine was Minewas cuddly, you know, because she'll

(04:43):
cuddle with you all day long.That's one of my favorite parts, favorite
parts of the day, you know, just sitting down with her and and
cuddling and slowing down a little bitright exactly. You know she you can
tell just that when you when youpick her up, almost just as soon
as you hit the chair, youcan see she just relaxes, you know,
and she'll just you can see thatcalm come over, and you know,

(05:08):
just it's so comforting to be ableto just sit with her and just
just spend that time. What doesKobe love to do? We'll put the
smile on her face. Chaos,I mean, that's the truth. Like
I feel like our life is chaotic, and it kind of always it just
is. We have a big family, and our door is constantly opening because

(05:31):
like I told you, our nursesare family, and even the ones when
they're not on, they just showup and come through. We had like
twenty people here last night, andI think, and we have therapy in
and out constantly. We have peopledropping supplies off constantly. So chaos she
lives. She loves it. Usuallyif you start talking about some drama or
juicy gossip, that's usually when shestarts laughing and you know, chuckling.

(05:56):
But so she loves for people tobe around in noise in general, saying
earlier that if she could talk,there would be probably some speek secrets being
so she's going to be a safespace for people. Oh, I feel
like she has been the best,the best therapy therapist for people. She
listens to everybody's stories and everybody confidesin her. If yeah, if she
could tell the stories, we'd allbe in trouble for sure. That and

(06:17):
then she loves to be outdoors.She's ready to go. She's ready to
go all the time. That's theway. And I used to I used
to joke with Megan all the time. She was like that. She couldn't
sit still, you know, sheshe if we were at the house,
she was ready to go something,you know, good to something. So
we didn't have anything to do.She was going to plan something. But
you know, that's the way shegot that track. Kobe's ready to She's

(06:38):
ready to get outside, which shecan. She she loves her van.
She loves to go for a ride. Yeah, you know, we get
her, get her in her chairand get her going and and and she's
happy. Do you have a specialname for the van? You know,
we we called it black Betty.So okay, so let's back up.
So we had a tan van Atwo thousand and three but I had like

(06:59):
four thousand miles on it, andwe called it Goldie and that was because
it was a joke because it wasso old, but it's what we had
at the time, and it waslike the wheelchair van. And it was
my grandfather's who passed away before wegot married, and we had donated to
another little family. But anyway,we end up on the side of the
road with it, not once,but twice. And so finally I was
like that in McGhee coming home froman appointment in Jackson. So we're like
two and a half hours away,and I'm like, what me and a

(07:24):
nurse, Me and Lauren And I'mlike, all right, Lauren, this
is just our life back to thechaos again, Like let's figure it out.
So I get out of the vanand I'll wave down some stranger he
thinks he knew me from high schoolbecause I'm not even from this area.
I was like, we're about todie. But so we finally got some
gas because apparently it was on emptybut mos but I meant my gas gage
didn't work, and we finally madeit home. But I was like,

(07:46):
we have to get a new van. So that was really the one that
you talked about was the tan Vanold Goldie, Oh Goldie. Yeah,
so she can get you there.So now there's black Betty. Now there's
Black Betty. She's a little moredependable. So do you still go to
Jackson for a lot of appointments?We just switched over to New Orleans because
it's so much closer. And Iguess I should have said we're in Gulfport,

(08:09):
so Jackson is how far from here? Three hours? And then New
Orleans would be hol far abou anhour and fifteen. So yes, it's
much like I can get there,get to the appointment before I would even
make it to Jackson. Usually,I do love my team in Jackson because
I have to say that because theywere phenomenal. There were tears shed when
I left that complex, and theyjust know your kid, you know.
And every time you have to startover, and it's just taking a book

(08:33):
he wrote and throwing it out andrewriting it all over again after you spend
all that time writing it. Anytimeyou switch a doctor or you switch anything.
So, because like I told you, she doesn't follow any book,
we have to write our own book. So when you have written that book
very detailed and then you decide togo to something else. It's it's a
lot. Well, let's get intoher medical side a little bit. So

(08:56):
I think you said Colby's four anda half, and so take this back
to her birth and kind of whatthat was like and how her journey started.
So we'll do the short version ofit for you, so because you're
flight to twelve. But so,yeah, I had normal pregnancy. She
did end up in the nee Qand I delivered just for low level oxygen

(09:18):
and we were going home on dayfour and she had her first what they
called seizure, but we found outwas apnea spells because she would stop breathing.
So we did a MRI on dayfour and she found out she didn't
have a corpus close them. Soshe had acc which could be extremely broad
to a typical IEP in a classroomsetting, or it could be to severe

(09:41):
disability, which we didn't know.And then that's when I was introduced to
the Welcome to Holland poem right thatwe were told about. Because I absolutely
loved that poem. My dad gaveit to me right after like day five
or six, and he was like, we'll figure it out, Megan.
Either way and he's a man.A few words. But we were at

(10:01):
the hospital, at our local hospitaltill April fourth and she was born on
March fourteenth, and then we wereairlifted to UMC because she was having these
spells and then getting intubated and couldn'tget extivated. And actually I had an
angel walk up to me at thathospital and whispered, we've done everything we
can. You need to ask,so get airlifted out. And I mean,

(10:22):
because as parents, I've never evenhad any experiences aneek you, So
I'm thinking we were where we're supposedto be. I mean, I didn't
even know there were different levels.And then you, at that point in
my life, the things that yougo very little knowledge of to feel like
I write another book about it,you know, level yea very quickly.
So we got airlifted and she left, which we weren't allowed rore with her.

(10:43):
So we had a drive to packbags first of all. And we
actually chose Jackson because my brother liveslocal there and I was thinking we might
stay there a week or two,so we might need to just stay there.
We spent two hundred and twenty threedays at UMC, and it went
from one extreme to the next.We started genetic testing and we did the
general one and everything came back negative. Obviously we knew there was something we

(11:07):
didn't know what. So then wewent to a couple other more specific genetic
mitochondrial disorders and those came back negative. So they actually had a research,
right, research go happening going onthere, And we went as a whole
family, did a genome sequence andwe were still told we might not even
know. So she has combined Dtwo L two h GA pronounces hydroxegleutaric acid

(11:35):
yes, which I used to spitit out that I learned very quickly.
Yeah, I don't have to saythese things anymore like I used to that
first year. I feel like Icould have taught a whole genetics course.
But I've actually been able to bemom a little bit more. But she
got her gtube April twenty nine.We got our diagnosis in June, and

(11:56):
then we had to make the decisionwhether we want to do a trade or
not. And that was probably probablyon the hardest decisions really for me,
right, you mean, I rememberthey looked at me and told me I
was going to be changing the trade, and I looked at them. I
don't know what you're talking about,Like, I can't do that. I
don't even know what. I don'teven want to trade what you know,
obviously you hear see a trade.It's very intimidating. I can change the
trade with mys clothes now, SoI'm just like, okay, let's do

(12:18):
it. But so with her herdisorder, it was more of a neurological.
She breathed fine on her own undernormal conditions, but with her her
spells as they called them, shewould anything could could set her off.
She didn't like to be hot,if she had a dirty diaper, anything.

(12:39):
It was almost like she didn't shedidn't know how to handle that.
She didn't know how to cry.And she would she would tense up and
and yeah, and almost just shutdown. But she would stop breathing,
and we would have to our nursesor we would bag her, give her
a few breaths and and calm herdown, you know, and and and
she would come out of spells.So at that point, she wasn't on

(13:01):
oxygen. So she's still not onoxygen. But I mean, she did
not have her that point, right, But they didn't. They weren't even
running, but you would have tojust start pumping. So yet right,
So we went through all of it. We had some oxygen at one point,
we had bipab, at one point, we had different things, and
then she'd be completely off because thatwas our goal to go because I said,
how do we get home? Theysaid, two weeks with no spells,
and I'm like, okay, wellwe made it like thirteen days and

(13:24):
I'm like and then I mean,like six spells in one day. And
my mom, I told you,like, she retired and stayed with us,
stayed with me the whole time becauseone of us had to physically work,
and it's like she would be Wewere there, it was our job.
We got there at eight and weleft at four o'clock for quiet hour
every day, and we stayed forrounds because it was a teaching hospital,
which was huge, which is whyI feel like we know her so well.

(13:46):
And I can say that confidently becausewe heard everything they needed to say,
and we were there for the spellsand saw what we needed to see.
But we would be there and Iwould step out to go pump,
and then she'd have a spell andthen we would sit there and we would
like We're gonna go have grab alunch, and then she'd have spell like
she would wait for us to leaveevery time, so like we didn't even
know what it looked like. Theywould tell us these things what happened,

(14:07):
and I'm like, I am hereeight hours a day. Are y'all making
this up? Like to the pointlike im We were like seriously, and
she finally it was early July,had like back to back she got intubated.
We try to excavate, she failedmultiple times, and then I looked
at it. I was like,we can't do that at home, right
because before we were just you'd bagher, Like I said, when we

(14:28):
get mad and we cry, wetake that deep breath to calm down,
and she can't. So I feltlike the bagging was like her reset button,
right, we give her breath andthen she would act like nothing happen.
So that's what was so hard.Between do we really need a trade
because she's a perfectly fine, healthykid who has no airway issue to she
stopped bringing an oxygen and dropped toyou know, forties and fifties instantly.

(14:52):
So I think I can remember callingyou and be like, we can't do
that at all, right. Andthen also the track was an easier access
for us too. Yeah, youknow, just trying to get a mouth
piece over her and you know,trying to get her. So the bag,
we'll go directly into her trake.You can give her a few breaths,
you know. And and but thatwas something that we were doing.
We would do. We would doit daily. We bagged our order every

(15:16):
day, multiple times, you know. Even but you know, she's she's
on her she's on her her pulsesox. She's got a heart monitor,
you know, and you can seeher pulse rate. You can see her
her oxygen and you could see itclimbing, you know, you see her
her heart rate climb up. Okay, she's getting upset. Let's calm her
down. Let's give her a fewbreaths. You know, she can't get
mad. She's allowed to figure outwhy she's mad. That's one I'm not

(15:39):
even that's one hundred percent. Ifshe got mad, you will be bagging
and you better figure out what itwas before that. And it could have
been as simple as she wants youto pick her up. And that is
no joke. It was so funnybecause she just wanted to be held which
what most babies do, you know, Or she just wanted her diaper change,
or she wanted she was hot,and that was because her temperature runs

(16:00):
about a ninety four to ninety fiveand that's not okay in the metal world.
Like you need to fix that.You need to put her on a
heater lamp, you need to putsocks on, a wrapper up, swaddle
her. If they did that,she would I mean spell after spell to
the point she got intubated. AndI can't remember. The third doctor came
up. He's all right, whenwe do a lombar puncture because she's running
a ninety nine And I was likeno. I finally was like, no,

(16:22):
you're not You're not doing another lombarpuncture. You're here about temperature and
we're here. I'm not saying shemight not have something, but no.
And so finally we had a geneticsdoctor who was an angel sent to us,
like he just listened. When youfinally can get a doctor who'll just
listen to you, you know,well that was a big turning point to
get to the point where you wereconfident. Right, Like like Megan said

(16:45):
earlier, you know, you're inthe hospital, you're where you're supposed to
be and when they come in andtell you what they're going to do,
you know, you say okay,and you go along with it and do
you know, but but get into the point where you know, we
knew her, and especially especially Meganis now Yeah, like with with something
like that a lumbar picture, shesaid, she said, we're not doing
that, you know, but Meganhas been her biggest advocate as far as

(17:07):
that, let's get out of airair the sweetest that was got some scissors,

(17:32):
you know, thanks love. Sothat is like a great example of
having to throughout the book, likeyou were saying earlier, Yeah, exactly,
especially with the temperature. Like,yes, that was a huge one.
I feel like once because it wasreally me and like I said,
because we were there every day.Once we figured that out, it was

(17:53):
a game changer. Like I feellike a lot of the spells did kind
of stop happening. And I'm notsaying stop, they decreased the spells and
we could actually get to a pointthat we were focused on something else other
than just spells, Like I hada child who lay in the bed,
like we're trying to get therapy started. We're trying to get you know,
just different things. I was justtrying to get home. You tell me
what I needed to do to gethome. But that was my biggest thing.
And when you said a minute ago, like you wanted the world to

(18:15):
see her or introduce her to theworld, like that was my biggest thing.
This part will made me tear upfor people just to know my kid
other than just a hospital setting,and to know that she was so much
more than just laying in that bed. And that's like, I don't want
ever her life to be a sadstory. I don't want it to be

(18:38):
this child spent two hundred days.I mean, yeah, that's her story,
it's her journey, but like God, so much more than that,
you know. It's like that wasmy biggest thing. In the hospital.
I just kept saying, I justwant to get her home, right,
we want the family to commeet her. I want to backup porch parties was
my exact words. We want atwo step on the back porch. Yeah.
So I made a bucket list whenwe were in the hospital. Actually,

(19:00):
and the only thing we didn't crossoff the bucket list as far was
Kylie's game. Because Kylie is outof high school now, but she had
volleyball games. But we you're notallowed to take her to the beach.
She has a track. While we'vebeen to the beach, her in line
even fell into the sand on accident. But I mean, just do it.
We went on family vacations. WeI mean just getting home. She'd

(19:21):
never physically been outside. Go outsideand fill the wind and fill the sun
on you, which she will sunburninstantly. But like just that was the
first thing on our bucket list,you know. And so like when you
said that Amingo, that was huge, because that is it's like every parent's
school, you know, And whenyou're dealing something with so complex, I

(19:44):
guess you just wanted to see somethingother than just the journey, Like it
is more than that, you know, you want her to be known beyond
the complexities. Yes, yes,yes, for sure. So we were
so went back to the genome sequencing. So there's a there's a amuse sation
that both of us are carriers,of which is rare in itself. I

(20:04):
guess for you to be a carrieris extremely extremely rare. And then for
us, for us to get together, yeah, is even rare. And
then and then we still have theodds of our children. Yeah, there's
a twenty five percent chance of ourchildren having her disorder. So you know,
we could have had eight kids andnever even known that we were a
carrier of of this gene. Doyou know what the actual the statistical odds

(20:30):
of that are for each of you? I don't know. Like I said,
she's one of two in the UnitedStates in one of twelve cases at
the time, right, yeah,one of twelve in the world otherwise.
But so, I mean, youguys are kind of we ever told him
that she won the lottery, wonthe lottery. That's some good genes right

(20:53):
there. Yes, right, Butso someone asked me before, you know,
like to ask about the genetic testingfor pregnancy, which it wasn't even
have shown. Not in the beginning. I was pregnant, but it wouldn't
change the outcome. And so thenwe started one of the medications, sodium
situate. And this was very earlyon and I was naive. I didn't
know any better yet, but talkingabout her cells to be able to reproduce,

(21:15):
because that's the thing, they can'tfunction normally like hours. So I
was in the depression. I couldtake that maybe when I was pregnant if
we were to have a third onebecause I used to want six children at
one point. Yeah. He waslike you chose that, and then the
girls just kept coming. I waslike, you know, girls, But

(21:37):
I had a doctor come up tome. They're like, well, you
can still have children. We'll justtake the cells and we'll test them on
if they have one, we'll justdiscard it. I was like, so
basically, you're telling me like andI don't know, I was just very
offensive, you know, like,my child's sitting right here. That's a
no for me. Yeah, you'retelling me to discard her, the one
that's laying right next to me,because she has what you consider not perfect,
you know. So that's a hardno. You know. But it's

(22:00):
just a lot of people have askedlike, would you have wanted to know
beforehand? And I think the answeris no, because I mean, and
it wouldn't have changed anything. Itwouldn't have changed anything but made you worry
or wonder what it could be,or you know, there's no way to
prepare what we've been through. Right, And you said total total days in
the ICU or the NICK you weretwo hundred and what twenty three twenty three
and how far at what point didyou get the diagnosis? She was born

(22:22):
in March we got it. Ithink it was into June. Yeah,
it's like four months. It wasactually pretty It's pretty quick, seem in
fac they did a whole deal sequenceto figure that out. So just just
beyond mid stay in you Nick,you stay And obviously you just said that
one of two in the United States, one of twelve in the world at
the time. So basically when yougot that diagnosis, I'm assuming that really

(22:45):
meant nothing, because yeah, whatdo you know with it about that exactly?
And I did so I went onthat night and did my research and
I don't mean Wikipedia research, likeI got on a medical base. There
was very little information. Two articleslike I had my two articles in the
very next day who with neonatal doctor, who I still love we're friends on
Facebook now. But I was like, Okay, this is what I have
because the genetics doctor had not madeit in yet and I'm like, so

(23:07):
is this what you have? Andhe's like, we haven't made it that
far yet, right, And Ican remember the residents came back and he's
like, you got us in trouble, Like we were all joking. You
know, we joke a lot,but you got us in trouble. He's
liked, you've done more homework thanwe have. He told us that we
better step our game up. AndI'm like, well, then get on
it. Like but so when hecame back, he's like, that's literally
the only two articles that we foundare the same ones you found. But

(23:30):
I told pay, Ja've written onewith Colby in it. So Colby and
the little boy in Pennsylvania. Nowhe has sent me. I don't think
it's been published yet, not onehundred percent sure. Her genetic Starignan Moud
to London, but he sent methe article and so, like you know,
you have participant A or B.They don't use the names, and
that's Colby, like it's him andthe tyre and the other little boy.

(23:51):
So they are teaching everybody when itcomes to the whole diagnosis. We were
told six months like cause she isthe severe because if you actually google it
different levels you could be just Dtwo or L two or combined D two
L two, which is what shehas. And her and the other little
boy have exactly the same mutation.But Colby's second mutation is different. And
they've actually never seen that mutation.And he told me that he thinks he

(24:12):
believes it was more severe than evenwhat the other child had. So,
I mean, we were told sixmonths and that's what ned expected. We
really didn't know what to expect,you know, and you know, we
we we didn't know if we'd makeit home from the hospital. You know,
we didn't know if if we werejust coming home just to say that
we made it all we made youknow, we didn't know. And she's

(24:33):
come so far, you know,it's it's unbelievable. Just toys. I
can't say, right, I don'teven know when that stopped all of a
sudden, it was just like,all of a sudden, like she just
I don't know, it's like,hey, I'll stop acting like that now.
I think honestly, she got older, you know what I mean,
Like so her brain wasn't developed enough. She's starting to have any things called

(24:56):
infantile spasms now where ter neurologists andhe's like, Megan, this is what
should happen at three months or sixmonths. He goes, and I don't
think her brain was developed enough tohave it. And it's just now to
the point in the last year,like when she gets in the deep sleep
she wakes up, she has thesespasms, and he's like, her brain's
developed more than she can have them. He goes, there's no rhymed reason
why she should even be having them. I think your kids having spasms is

(25:18):
a good thing. It's a development. Yeah, normal, Normally that's something
that that can cause brain damage orcan cause you some some severe side effects.
But but yeah, we looked atit as as she's at the point
where she can have, you know, have those spasms. It was yeah,
she'sily just saying, I'm going todo this on my time exactly,

(25:38):
me the space exactly. And wehave a set of doctors now, her
neurologists and her pediatrician who well soher pediautrition. Has several pauses himself and
has been told his he had tolike go leave the United States to go
get his doctorate degree because they wouldn'tlet him get it because he had some
He does home visits for children likeher and you know and other children around

(25:59):
here, and he's amazing. Hisgoal is to keep her home, which
is what my goal is. Likehe said, what do you need Megan?
Like if I told him I needan IVY post so we could do
an IVY he he would write mein order and we have it. And
then her neurologists also had some specialneeds who has recently passed away in the
last year. But they just getit. And having doctors that get it
just make your life easier. That'sback to writing her book. You know,

(26:22):
it's it's not rushed to the hospitaland see what they can do for
her. It's this is what needsto happen for her. And they're on
the same page, you know,and and and to see to see that
change was incredible for me to wherewe would meet with a doctor and they
would look at Megan and say,what do we need to do here?
Or what's you know, what's what'swhat's going on here? And she had

(26:45):
just as much input, if notmore than, than the doctors did because
they were learning her at the sametime and learning trying to figure out,
you know, what our process wasgoing to be. You know, And
I say that all the time.You know, I call her dot Megan
when I'm talking to other people.And you know, when we when we
get new nurses in, you know, she trains our nurses. You know,

(27:07):
we have we don't have those highlevel hospitals here. We have nurses
that come in that haven't dealt withthe trait before or you know, haven't
done that. And and they comein and she goes, Okay, you
know, this is day one,this is this is where your training starts.
And she shows them everything that theyneed to know, you know,
and it's just it's it's unbelievable tome to see that, you know,

(27:29):
and to watch that progression, youknow, it's it's it's it's amazing.
That's really refreshing to hear because wehear a lot of families talk about having
to trust your gut and push back. Yeah, things like that. And
two, which sounds like you hadto do early on with the temperature conversation,
right, But to get to thepoint where you are now, where

(27:51):
you have a team that is listeningand responsive and even looks to you,
is that's refreshing because it changes Yes, common thing, I don't think.
But they were able to say earlyon that Okay, we're learning to Yeah,
we don't have the information that weyou know, we're doing our research
too, let's learn together. Andthat was that was huge. And like
I said, you had a few. I had one tell me once only

(28:12):
it was time first to get discharged, and she had a spell, and
they're like, well, I can'tsend you home. She's I can't send
you home with a child that doesn'tbreathe. I said, well then you'll
never send me home, right,that's what my child does. This is
what we do every day, andyou'll never send me home if you keep
that. And finally the MP she'slike, I'm angry with mom. Like
you're like, she's ready. There'snothing else we can do for her.

(28:32):
They can't do at home, andthe doctor obviously got her little panties in
the wad. But you know,so yes, it is that like and
I mean it, all of it. Insurance supplies. I mean I could
go right about that one. Likeit's a it's a fight weekly if not,
I mean daily still, but youknow you're having to be the go

(28:52):
to person in between, which iswhy I do stay home now. And
I'm just her little secretary for allthe things. Administrator. Administrator like that
title a little bit better. Soyou said, originally she was given six
months and she's four and a half, so she's lived multiple of her original

(29:15):
life and expectancy outside of that youreferenced earlier talking about her resilience the mountains
that she's overcome that was told whatelse would you put in that category?
That she's just kind of looked atwhat restrictions were put in front of her.
And she goes to school now,she has her own school. We
go to the Children's Center and shehas classmates. She has a first day

(29:36):
school picture just like everybody else,I mean, her own way. She
told me she loved me. Shehad a switch and she hit the little
switch toy. So you know,like we're just moved so much like the
picture of her. I'll have tosend you that too, of her in
the classroom with little classmates. Weonly go twice a month, but still,
like her name is on the door, just like all the other kids'
names. Like, you know,it's just very She has a bumper car

(30:00):
that she drove. She has alittle bumper car that she drives around.
You know. The vacation was ahuge one for us, right she went
camping. We went camping, andthat was a lot yes planning, yes,
a lot. But we're going tosmooth like this year in Alabama.
So we've done the camping thing.It was forty five minutes. I could
also hit iten straight to New Orleansor EUMC. Okay, so you have

(30:22):
to have the game plan. Sowe're going outside of Birmingham. They have
a huge children's hospital too, sowe're going to do that in June.
But you know, we came home, you know, yeah, it's you
know, you come home with awith a newborn and you were already on
edge, I guess, you know, but coming home with her, it
was it was like keep her ina bubble. You know, what are
we what are we going to do? Right? What are we going to

(30:45):
do? And you know, itwas it was don't touch her, don't
get close to her, don't getyou know. It was she had her
space. And I mean anytime youknow, family would come over, you
worry about you know, you worryabout you worry about all the kids,
all her cousins, is anybody,you know, everybody's or you got to

(31:06):
keep everybody away from her. Iremember having people at the house and we
we blocked it off. We hadchairs, you know, for her space,
and nobody went in with you know. And then just last night we
were here for Carson's birthday and allthe kids were running around and she was
in her chair and just right inthe middle of every you know, in
the middle of all of it.And it's such a huge difference from yeah,

(31:29):
from where we started to where weare now. You know, it's
amazing. The first time at theold house, we walked outside and we
had a bagger back in because shewas so mad. Yeah, we said,
let's try it. We'll take heroutside. We were so exciting and
it was hot, it was May. We were crazy. We went outside
for about twenty seconds and we hadto she was so mad. We had
a bag all the way back in. And now we lived outside. So

(31:51):
it is the small things, forsure. I remember our first family walk
just an hour to get ready.Oh yeah, her first wheelchair and we
had to strap her all in,you know, and everything, and we
walked around the circle fort like wehad to go back in. We did.
We were excited. And this yearshe walked ten k We did a

(32:13):
ten this year. Incredible. Yeah, Joe ran a half marathon for the
Children's Center. It was a bigfundraiser and we had probably forty people,
I don't know how many nurses wehad and family members and then we did
with her. Yep, she lovedit. It even rained. She never
felt rain before until that day becauserain and equipment doesn't really combine. But

(32:36):
how she handled that it wasn't crazy. We had kept an umber lain her.
But you could just hear, like, keep flickering. What in the
world was actually hitting? I guesssomeone's spitting on me. Whats happening?
Yeah, we're out about that.Mm hmm. So if you could go
back to those like early days whenyou were just receiving all these super disheartening

(32:59):
news, is there something you wouldtell yourself? Yeah, she asked me
that question of the day. Yeah, I mean that's the first one I
started. And that's a mixed onefor me. Like I said, I
told you the other day, it'slike you have I had a doctor tell
me you have to find something positiveevery day. Yep, and that's one

(33:22):
hundred Like you have to choose joy, you have to choose your happiness,
you have to choose to find thegood in all the situations. I feel
like that's only I told him thatin the power of prayer is the only
thing that pulled us through daily.And after I told you, I even
thought about it because on the flipside of that, I had an aunt

(33:42):
finally tell me it was okay tobe mad, it was okay to be
sad. And once I got thatpermission, I feel like the stress,
like that weight of it because Iwas trying to be positive every day,
like I told you, I putout a cold be positive every day on
Facebook when we were for however manydays. And but the same time,
I don't want other parents who aregoing through this to be like, Okay,
well I'm not that. No.I one hundred percent got mad.

(34:05):
I one hundred percent had the breakdownsand ask why my kid? You know,
cause everybody wants to tell you andit is amazing that your child is
teaching so many people, your childis showing spreading the love of God,
which is you know, amazing,But why why does it have to be
my kid? You know? Soit's okay to be say why cause God
can handle it. First of all, It's okay to be mad and tell
heready knows how you feel, youdon't, you know, So be given

(34:27):
that permission to allow yourself to havethose emotions. I think was a huge
relief for me. I mean itw it was like it's like all I
said I wasn't mad anymore. Ohokay, I'm allowed to. Well that's
good, you know, and Ithink so it is. You have to
choose joy and you have to wannafind the positive. But it's okay.
It's still okay to have to walkthe breakdowns. You know. It's okay

(34:49):
that she should have started preschool thisyear and walking with her big sister to
school. You know. So ifI want to cry on the way home,
I can do that. You know. It's just not you can't ch
can't stay in that position. Youcan't stay in that mindset of the wise
part, you know, because askthem why it is not going to change
anything. Also, looking at itlike that, you know, there's a
reason why, you know, andthere's a reason why we Oh yeah,

(35:13):
she's changed us while we were givingher. Yeah, there's And I'm the
type you know, I had.I've got three girls, and I can
remember being absolutely scared to death whenI brought all three of them home.
You know, my oldest is twentynow. She was twelve when Carson was
born, and everybody said, oh, well you've been through this before,
you know, you know what you'redoing. That was twelve years ago.

(35:36):
I had no idea what's going on, you know, and and scared to
death to bring her home, andand and like I said, the same
thing with her, you know whenwhen when everything happened with her, And
I mean, just not knowing atall what you're going to do. And
I'm also you know, I don'tdeal well with with medical things with I

(35:58):
don't. I don't look at youknow, injuries, surgeries, things like
that. I'm not. I'm soglad that there's nurses and doctors and that
that can handle all those things.I'm the farthest from that. And when
they started talking about the things thatwe're gonna do at home and we're gonna
change tricks and we're gonna do allthis and she's gonna have a G tube,
and I had no idea. There'sthings that that I've done that I

(36:22):
never thought I would do in amillion years, you know. But but
but that's what we do, youknow. Just that's how it goes.
That's right, That's right. So, Dad, if you were giving your
self advice during that stay, whatwould you say, It's gonna be all
right, You're gonna figure it outand you can handle it, you know,

(36:47):
you know, I just I don'tknow. It was like like like
I said, I just I justremember being I think, you know,
it's gonna be all right, it'sgonna be all right. Yeah, you
can, you can do this,you know. And my my grandmother.
We would go visit my grandmother andshe would just sit and she would just
just smile and watch kolbe and butbut she would tell me every time,

(37:09):
you know, y'all are doing sogreat with her, you know. And
and and there's a reason why youknow she was given to y'all, and
that meant so much. M h. You mentioned how excuse me, how
Colby's changed you. How would yousay that you've seen your wife? How

(37:37):
is your wife still the same womanyou married and is different because of your
journey with Colby. Wow, Soshe's definitely still Uh, she's still the
same. She's still the same,you know, independent, strong, opinionated,

(38:00):
you know. But I think itI wouldn't say settled her down,
but but slowed it down. LikeI said before, she was if we
had downtime, we were doing something, you know, we'd say, oh,
we don't have anything to do thisweekend. And by the time that
sentence got out of my mouth,she'd have something, well, we can

(38:21):
do this, or we can dothis. You know, she was ready
to go all the time. Itslowed down, but in a good way.
You know, she was she wasteaching and made the decision to stay
at home and basically take on anew career. Like I said, it's

(38:43):
it's amazing to watch the things thatshe does with Kobe and the things that
the things that she knows. Youknow, there's things that she does on
a daily basis that I have noidea how or you know, how she
balances everything, but but she does. Somehow she balances that with with Carson.

(39:07):
There it is, I told,gossip and getting juicy. You think
that's funny, that's what is happening. You just needed juicy stuff, That's
right, You just need a juicyconversation. Oh good, look I got

(39:27):
you. I'm clear with the girlshe had already. She didn't turn it
off. She did. I waslike, my phone died, but not
my camera. Yes she did.That's great. But you know she's always
she's always been that. She's alwaysbeen motivated. She's always had that drive,
and you know everything is just apurpose for her. You know,

(39:53):
she's she's now she has the purposeof sharing Kobe's story and letting people see
you know that this is this isjust how Kobe is. This is just
our life, you know, thisis just what we do. And just
watching her be that advocate, youknow, and and and being her voice

(40:16):
is just incredible. We talked withyou know, we talked about the Children's
Center who does who does her therapyand the fundraising that they've done. And
we had an event, you know, when Megan spoke and just just watching
her on the stage and watching herspeak and looking at the people around who

(40:37):
were just it was complete silence.Everyone just hung on her every word and
listened to, you know, listento Kobe's story, you know. And
that's that's amazing to me to watchher do that. And she's always she's
always been that, She's always hadthat, you know. It just I

(40:58):
this is where she directs it now, you know, and this is but
but you know, she she focusesthat that same effort and and and love
and everything on our family and onour girls and you know, and towards
me. And it's just she's alwaysit's just brought it out even more,
you know, just her huge heartand just the person that she is.

(41:20):
So I was getting deep on thatone. Yeah, sir, we don't
tell you that one's coming, rightright, just throw it out. Yeah
yeah, okay, Megan, yourturn asked the questioning it. Oh gosh,
I mean, I guess the biggestthing is one of the reasons I
fell in love with him is becausehow much he loved it. He's such

(41:42):
an amazing man and dad period.You know, like, never a million
years I think I was gonna marrya man with a kid. I was
like, no, because I wasindependent and wild and whatever. But I
feel like it's like the main oneof the main reason I fell in love
with him because he was so compassionateand just he's not the typical dad.
Like he does the hair every morning, you know what I mean. If

(42:04):
I can do it, he cando it. You know what I mean.
He's cooks probably more than I do, and I can be doing the
dishes and he just jumps right in, like you know. So then you
bring home a complex means child andyou've got I don't even think triple the
amount of load is the accurate description, but ten times the amount of responsibility,
you know. And I was stillteaching when we came home and I

(42:29):
can finally remember, like I loveto give one hundred percent of everything I
do. I was giving everybody abouttwenty percent at that point because I was
still trying to teach, still tryingto be a mom and a wife and
of anything. And I was like, I'm failing at all of it instead
of excelling at anything. And sohere's the famous Lord. So he knew
when I told him, I waslike, I can't do this, like

(42:50):
I can't keep teaching and being whateverybody needs me to be because I do
love to teach. I love tobe in my setting and everything I said.
So when I told him, I'mgoing to walk as like I can't,
and he's like, all right,well then we'll figure it out.
Like that was it. It wasnever a what are we gonna do financially?
Like what are we gonna like?He just supported me and in that
journey, which made it talking mywhole lovel of respect, right because we

(43:12):
just lost a whole income and you'relike, what are you gonna do?
And we just figured it out,Like that's our whole model. I think
he says that all the time,We'll figure it out, We'll figure it
out. It's like his favorite thing, like Joe, what are we gonna
do. It's like, we'll figureit out, and we did. Like
God provides and we just figure itout and it works out. But just
his support was at a totally differentlevel, you know, And I guess

(43:35):
that's as a mom period. Youknow, having a husband that just takes
part of the load is huge.So having a husband takes part load when
we have a complex child. Theydidn't just sit in the background and let
you do it all. You know, Yes, I make the appointments and
I do the secretary deva secretary administrationpart of it. But like we had
new doctors clements when we moved toNew Orleans, well he just took off

(43:58):
work and came like it wasn't question, it wasn't all right, Well let
me know how it goes, youknow what I mean. If I didn't
do my trait ties or trait changewith the nurses, like right, let's
go get it done real quick.You know. So just that level of
support was just increased to a totallydifferent level and out of you know,
out of respect because he respects me, and I just I love him more
for it, you know, justsupporting you and then taking all the the

(44:22):
blunt of everything else, all theother financial stuff like and he sed,
you make more money, it's notgood good, but you know, it's
just it's just it's a I meanbecause I've read plenty of things, like
most marriages don't make it through alot of marriages don't make it through in
general in twenty twenty three, muchless if you have a conflict needs.

(44:45):
So it's just being appreciative as well, both ways, you know, and
showing each other respect and just andthen giving each other the space when you
need to, right, And Imean, I guess the part of it,
like you know, come back.Know you just have to know what
your limits are sometimes and listen toeach other really so and like I don't

(45:06):
always I'm not good with always expressingyou, you know, not ever talk
about stuff, but just say Ineed a minute, like because we take
turns with the girls. One staysup with Carson and then vice versa,
and one stays up with Kolbe andwe'll switch it out every night. And
I know there was a night I'mjust like I'm done, Like I'm tired.
I need you to do whatever,And like we would just you know,
just know when to say it andshure go ye the nurses telling them

(45:31):
all the time. Poor lord.So this is Joe's other wives, really
the sister wives that we do haveone male nurse so not to mention,
yeah three, I have three daughters. Yeah. And how many nurses we
have now? Seventeen fifteen? Yeah, and we have one we got trip

(45:52):
trip, but we watch football.The nurse that's Lauren for four years and
they're best friends. They were comingback and they all give Daddy so much
drama, don't we. Mister mistertips my guy and he gives Daddy a

(46:16):
break. He was here yesterday.Uh yeah, yeah, tell him they
joke. Oh gosh, like thedrama, don't you. Lauren tells him
that all the time we were justtoo boring. Earlier that we didn't have

(46:40):
our coffee yet. We said thatwe didn't mean but complete accident. Great
minds, Like what do we say? Okay, we are close to wrapping
up, but I don't think wecan wrap up without talking about the special

(47:04):
relationship that Colby and Carson have.So, mom, how would you describe
the relationship between these two? Now, you're really gonna make me cry.
I don't. I don't even knowhow to put that into words. It
is such a special connection and lookingat Golly, sorry kiddy, I mean,

(47:25):
as soon as Carson comes home,this one lights up and she knows
her sister's voice. But what thesespecial needs kids teach their siblings, it's
just unreal. Ah. So oneof the speeches I did, both the
girls went up there with me andlike just watching her, like she just

(47:47):
holds her hands constantly. Even herbirthday picture yesterday she took her a little
birthday crown off and putting on hersister. It's just a you have the
sister lave, you got the siblinglove. It's it's so beyond the two
of them together, which is whatI always wanted. I want her just
to come home and be with hersister. And she gets in the bed
with her and reads books with her, watches TV. She is Colby's voice.

(48:13):
Literally, I do mean literally,I'll say something she's like, she
doesn't want to I don't want todo that. Mom. She's like,
that was Colby. She said shedid not want to do that, And
I was like, is that right? So it's very appropriate when she wants
to say it's Colby that said somethingas well. She's very smart, little
young and but it's just so genuineand like I said, Carson is so

(48:36):
she's a better person because of one. Like I mean, if she's not
a therapist or some type of childwith a special I mean she will be
I know. Just she just thrivesin that her baby doll, her baby
Blake has a trick because she wantedher baby doll to have a track like
her sister, but she didn't wantto put a hole in her neck,

(48:57):
so she had to accommodate that.She's watching out for too. We actually
do have a cousin named Blake,which is why the baby doll's Blake.
And I and so I told herwhen she was born, Lauren was gonna
be in the C section, andshe's sad. You know, I think
she's gonna have a drink. Youknow, I think, what do you
think she's gonna have? So it'sjust very matter of fact. We are
very matter of fact. We've toldher that from the get go, Like
you know, Colby's got a YouTubeand and then like she you know,

(49:21):
she's asked me the questions will sheever walk? I said, she will
not walk? But we will alwaysbe her legs, you know. We
will push her wherever she needs togo. And we put her in that
peapot and she has rollerbladed with herand you know, she knows she won't
talk, but we are her voiceif we're any you know. So their
connection is I don't even know theword for it. It's such a blessing

(49:45):
to watch them together, it is. I love it. She'll call you
out quick too, if you didn'twash your hands, or if you come
in touch Colby, you didn't washyour hands. There's hand sanitizer right there.
Yeah, So it's a she's lookingout for looking out for her little
sister. And she's extremely proud ofColby and anything we're gonna take Colby,

(50:06):
she wants to know if we're nottaking so why aren't we? And I'm
like, well, there's a thousandpeople there or something, you know,
but they forgot. We went tothat Fall Festival last year and Colby rolle
a horse with you. Yeah,yeah, she rode a horse with her.
So she's done all kinds of things. They do everything together. She
always wants Colby to go and tobe a part of it and to just
be there. You know, soshe's got a best friend for life and

(50:30):
absolutely that's right. Oh yeah,I guess can tell Carson, if you
could tell the world some things aboutyour sister, what would you share?
She's the best sister. What doyou like to do together? Read books?

(51:00):
Okay? And you like to rollerblade? I saw you pushing it
earlier. M hka. You'll watchmovies together? Mm hmmm, mm hmmm.

(51:21):
Where are some places you'll gone together? Mm hmmm the part been to
the park? That's fun? Mmhmm. Are you went camping? Fun?

(51:43):
Did you have a friend ask aboutyour sister's trake? Es? Remember
when Britain, when Britain was askingyou about her. Remember Brittain came over
and she told you she was sorrythat your sister had a drake? What
you tell her? Do you rememberwhat she told her? Now? You

(52:05):
won't be shy. You've been shythis whole time, talking this whole time.
I remember she told her she wassorry that your sister had a trait
that she couldn't breathe. We're atPitt and Bubbell's house. What did you
tell her? Oh, come ongirl, all right, mom Philliston,
what'd she say? She told her? She goes, No, the trake

(52:28):
helps her breathe. She's fine,there's nothing wrong with her. She said,
no, she's fine, there's nothingwrong with her. There's not she's
just very And then she had acouple of friends come over, when Grayson
and Jojo came over, and theywould ask questions and she's like, no,
that's just her drake. It goesinto her neck and it helps her
bring a little bit. And youtold them about her g two huh.

(52:50):
And she's asked been asking lately.She goes, how do you know what
should her numbers be? Numbers andagree numbers, So she's learning what the
numbers are and then how do weknow she needs to be suctioned? So
she's been learning that. So theother day we went to his mother's house,
which we all live in the sameroad, and I didn't have a
nurse for the first time, soit's just the three of us. I
don't really travel solo with her obviously, but we were going like two miles.

(53:13):
I'm like, all right, wecan do this. I said,
of course, I need you towatch the numbers for me. She's like,
okay, well that was a mission. Momi night ur nice seven,
nice and we're nice. Seven andone hundred. Now Mom's night three.
It's ninety three moms. And Iwas like, well, it's gonna change
a little bit because the road's bumpy, so like air traffic control. But
she was on it. She watchedall the numbers for me, and the

(53:35):
three of us made it to Mimmy'shouse. Hung girl, what an awesome
big sister. It's been a noodlittle nurse too. Hung girl. She's
given medications. She'll give her Kobe'sMed's all right. Last question, Dad,
what makes you proudest to be Kobe'sdad? Wow? Mh. Just

(54:09):
to watch just just to see herchange, I mean change people, you
know, change people's lives. Helicopter, that's how I that is. Okay,
see did you arrange for that togive you an extra minute think a

(54:30):
little bit, But just just justto watch that, just to watch the
lives that she's that she's touched,you know, starting with ours. You
know, like I said, there'sI've done things that I've never thought I've
done before. But you know,we've met people that that we would have
never met, and there's people thatare that are part of our family.

(54:52):
Now I'm trying to be serious.She gives you a serious question. She
lives. Yeah that like pause,yeah, yeah, you think that's all

(55:17):
funny, don't you do it?Now? But watching that, watching that
change and watching her just affect someone'slife and and change someone's perspective or you
know, like we said that thepeople who we've come in contact with,

(55:38):
the people who are part of ourlives now that the people who are part
of our family now you know that. You know, we have our nurses
who have come in that that Ihave never done home care or you know,
never even thought about doing that andand I'm sorry, not homecare,

(56:02):
private duty nurses, you know,but they come in and there immediately,
like like Megan said, she's contagious, you know, and like like her
laughing. You cannot you cannot notsmile at that. But that's that's what
that's what that's what makes me proud, is just watching her the effect that

(56:27):
she has on other people and thefact that she has on people's lives and
just she she changes people. Okay, Mom, you're ups because he took
it. I mean it is itswatching her change lives. I guess my
thing would be for her personally,watching her overcome everything, all the things

(56:49):
she was never supposed to do,you know, because you get told everything
they're never supposed to do. They'renot gonna be able to walk or talk
or lie or give you emotion.We've been told that so many times,
you know, sort of watch herdo all the things she was never supposed
to do is why I'm so proudof her, like just to overcome it
and exceed it and just thrive,you know. And I still tell them

(57:13):
people, I was like, yes, her life looks different, it's not
the typical, but I said,she is living her best life. I
tell people that all the time.Yeah, it's different than us, and
we don't go hit every event thereis or run the roads every weekend.
But she is living her best life. And I'm just glad I get to
be a part of it. I'mglad to be that I get to be
her mom to watch her do itand help her do it, and you

(57:36):
know, in whatever aspect that maybe. Another thing too, is is
like her genetics doctor, you know, asking us to that if he can
use her story, you know,or if he can if he can tell
her story as part of you know, something that he's doing at a at
a school or something that he's teaching. Tell you a little bit about that,

(57:58):
right that that may makes me proudto know that what they've learned from
her could make a difference, youknow, to someone else, you know,
and they could use that. Absolutely, absolutely, that makes me very
proud to make this journey if possiblefor someone else. Yeah, exactly,

(58:22):
because the thing that she's you know, things that she's done, and the
things that that she's come through,she kind of has paved the way,
yeah, you know, for someonewith her disorder. At go shot Love,
we do amazing things for amazing familieswith kids on rare medical journeys.

(58:43):
Each month, we shall love herfamilies through the sale of creative apparel inspired
by the kids. This month's Bloomwhere You Are Planted design is inspired by
Colby, a resilient four year oldfrom Gulfport, Mississippi, who is lovingly
referred to as a Diva by herfamily. Every purchase in November will go
to help purchase storage systems to keepColby's medical equipment supplies organized, giving her

(59:08):
family easy access, and allowing moretime for things that matter most. Visit
our website atgo shout dot Love tosupport Colby through the purchase of a T
shirt, hat, tank top,hoodie, or other items