February 13, 2024 • 50 mins
Brighton is a bubbly, cheerful and sweet two-year-old who loves all things Disney! Nestled in Mississippi, she shares her days with her loving parents, Josh and Kelly, and her older brother, Sully. Their family time is filled with warm embraces and cozy movie nights.
Brighton's journey took an unexpected turn within her first year when she was diagnosed with Leigh Syndrome, a rare mitochondrial disorder. Despite the hurdles she faces, Brighton remains a beacon of light in every room she enters.
In honor of Brighton's story, we present this month's "Beautifully Bright" t-shirt design. Throughout February, every purchase will contribute towards alleviating the financial strain of medical bills and acquiring necessary equipment for Brighton, expenses not covered by insurance.
Visit www.goshout.love to support Brighton through the purchase of a t-shirt, hat, hoodie, or other items.
Brighton's journey took an unexpected turn within her first year when she was diagnosed with Leigh Syndrome, a rare mitochondrial disorder. Despite the hurdles she faces, Brighton remains a beacon of light in every room she enters.
In honor of Brighton's story, we present this month's "Beautifully Bright" t-shirt design. Throughout February, every purchase will contribute towards alleviating the financial strain of medical bills and acquiring necessary equipment for Brighton, expenses not covered by insurance.
Visit www.goshout.love to support Brighton through the purchase of a t-shirt, hat, hoodie, or other items.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
Brighton just turned two years old,and one of the reasons we've picked her
name Brighton is because we initially sawit it said one who was loved,
and it just captured us. Wefound out later that's actually not true.
It means like bright town or youknow. Another one is London by the
(00:22):
sea, and since we lived bythe sea, I thought that was also
fitting, so we went ahead andstuck with Brighton. It just really I
thought captured her name. And thenher middle name is Rebecca, after Josh's
mother who had passed from colon cancer, so we were looking to honor her
and I really do think her nameis quite fitting for her personality. Her
(00:46):
name is quite fitting. Indeed,Hi everyone, my name is Seth Carnell
and welcome back to the Go ShoutLove Podcast. As we do every month,
we are here to talk about ourfeature kiddo and their family for February
of twenty twenty four, we aretalking about Brighton from past Christian, Mississippi.
Brighton is a happy two year oldand you can tell that because she's
(01:06):
always smiling. Her family describes heras bubbly and joyful, especially when her
big brother solely comes around. Thosetwo share an undeniably heartwarming bond. Today
we are talking with Josh and KellyBrighton's parents, who will paint a picture
for you on what life is likewith their kids, as well as take
you on their journey through Brighton's diagnosisof Lee's syndrome. If you have been
(01:32):
listening to our podcast, you willhave heard of lee syndrome before and know
a little bit about its uncertainty andwhat it means for young Brighton's life.
If you haven't, Josh and Kellydo a great job of describing what it
means and how that has influenced theirlives. Leading this conversation is Josh Veach,
our executive director of goh Shout Love. If you have a second,
(01:53):
please rate and review this podcast andshare it with a friend. Shouting love
means sharing these stories that matter.I love that you put so much thought
into the name. And there's anold guy that I knew that he always
said, don't let the facts getin the way of a good story.
So even if it doesn't mean whatyou originally thought, it meant like you
(02:14):
still have a reason behind it.So that's really cool. So what you
mentioned, how it's fitting to herpersonality Josh, how would you describe Brighton's
personality. Oh yeah, she's justa super happy, smiley girl, especially
when she's feeling you know good,you know, not having you know,
(02:35):
just autonomia, yeah, outbreaks orwhatever you want to call it. You
know, she's just normally just smiling, laughing, cooing, and you know,
it's a it's a lot of fun. You walk into the room and
she just lights up, you know, like this morning, you know,
sitting there and playing with her andeverything, and then Passion, one of
(02:59):
our nurses walked in and Brighton juststarts laughing and smiling at her like you're
here for me, you know,And I think that's a lot of fun
too. Is like she loves acrowd. Yeah, absolutely loves a crowd.
And you know, if a bunchof people are over here, she's
(03:19):
just like, you know, yellingand talking like everybody, you know,
get over here, see me.So she's a host y Yeah, absolutely,
yeah, hospitality. Yeah, she'sabsolutely blast. That's awesome. Kelly.
What would you add to her personality? Oh yeah, she's bubbly.
You know. We always say brightfor Brighton, and you know it's funny
(03:42):
because we were when we had hername. My parents are like, well,
what what's her nickname going to be? What's her nickname? Oh no,
she's going to be Brighton full name. We end up calling her bright
half the time. She's just sobubbly and she loves She is very social,
definitely a social butterfly. She lovesto smile and oh man, be
the center of attention. Absolutely awesome. When when I first got here and
(04:08):
was talking to Sole, the olderbrother, he was telling he was telling
he's almost going to be ten.That's right, He's coming up on ten,
which is a big deal. Andthen he was quick to pivot right
to Brighton and celebrate how she hadjust turned to and all the new things
that are come in with being twoand and so it's it was very evident,
very quickly that there's the bond betweenthe two of them. And so,
(04:30):
Josh, how would you describe thatbrother sister relationship with the two of
them? Yeah, I think thatI think Brighton's favorite person in the entire
world is Sally. There's just unmatchedjoy, you know, and happiness and
glee. When Sally comes downstairs inthe morning and you know she sees him,
(04:56):
it's just like the biggest you know, uh, you know, shriek,
shrill, you know, like,ah, there he is, you
know, he's coming to see me. And she just lights up like no
other than for him, and youknow, hitting him and kicking and you
(05:19):
know she's not a super active baby, but for him, she is.
Yeah, special bond. Yeah absolutely, ye Kelly, what about you?
Oh yeah, we just learned recentlythat she can yell. We had no
idea, and that's because Sally,when he comes down in the morning,
he says good morning to her.They have a you know, moment,
(05:42):
and then he usually goes and getson his computer, and but she wasn't
done hanging out with him, andshe was like yelling for him. And
then also he you know, he'samazing. He's incredibly helpful. He's very
observant. He he will he knowshow to work the feeding machine. He
actually knows how to suction her ifwe ever get in a bind. We
(06:05):
don't want to put that responsibility onhim. But he's so smart and so
attuned an in tune with her,and he just he just can make her
smile and light up like nobody elsecan. Yeah, we're going to get
into Brighton's diagnosis and some of thosethings here in just a second. But
(06:27):
while we're on the topic of siblingthat relationship. One of the things that
I've been talking with previous families thatgoing through, especially earlier in a diagnosis,
and adjusting to all the things thatcan come with that. It can
be tough on parents on how doyou maintain as much of a sense of
(06:50):
normalcy and connection and all those thingsthat go into having more than one child
when there's so much, especially shortterm, like in the adjustment phases,
of energy and focus that has togo into caring for your child that's now
in a rare medical journey. AndI'm curious how you guys have navigated and
(07:14):
are navigating that kind of element ofparenting another child and keeping investing in that
relationship as well as as well aspossible. Yeah, it is tough,
you know. One thing that Isee is like just you know, being
(07:36):
intentional paying attention. Sully is extremelysmart. I'm sure he's gonna come on
a little bit later and tell youall about it. But I think with
that smartness and everything actually or thatintelligence, he actually kind of makes it
(07:58):
easy on us because he helps outbecause he does all of those things and
I actually think he's pretty good atletting us know to like, you know,
hey, I need some attention now, you know, where another kid
you know may or may not beable to to kind of do that,
(08:20):
you know, and and you knowit'll come over and then sit with you,
and you know, like just straightup tell you, like, hey,
let's play a game together. Youknow, it's like oh okay,
yeah, you know, absolutely,like he needs me now, or he's
just he's a good communicator for hisage, like let's go to the store
(08:41):
together, Let's do this together.Hey, let's get you know, candy
for movie night, you know.And that's one thing we've we established as
we do a movie night either Fridayor Saturday night, usually Saturday night all
together, so that you know,we can we can have that, you
know. And there's just paying attention. And one thing that I've noticed is
(09:07):
things he can do himself, allof a sudden, he's asking you to
help him with. So just payingattention to those cues and everything to say,
oh okay, yeah, that's somethinghe can totally do himself. But
he's asking me, So there mustbe you know, a bigger reason yeah
for that. Yeah, Yeah,that's a really great point. That's a
(09:31):
great piece of advice I think forevery parent. I mean, I find
myself in that situation, get askedto do this or that, and it's
not actually on the top of thething list of things you actually want to
do in that moment. You actuallyhave other things that need to get done
or you want to do. Butlike reframing it and what they're really asking,
like you were saying, is Iwant time with you? Is like,
(09:52):
okay, you hear it different whenyou're recognizing that the underlying thing there
isn't really the thing, it's therelationship. What about you as mom?
Yeah, I would say that.Josh mentioned the movie nights. That's something
that we started when we were tryingto find things that we all do together
and kind of find a time toconnect. And also just you know,
(10:16):
given her situation, being out inpublic spaces can be difficult trying to keep
everybody healthy, So movie night wassomething that we could do all together.
And then usually we'll take Sully toDollar General and be like, all right,
pick out a COPD candy or twoand make it a little bit special.
Yeah, fun traditions, that's right, that's right. Things like that
(10:39):
he's an excellent reader, so hewill read to her. She loves that.
He also, you know, socan be so silly and playful and
she just we need that. Soit's amazing. And then to touch on
what Josh was saying, I wouldalso say that behavior is communitytion. So
(11:01):
if I notice that things are alittle bit off, first I'm like,
did you sleep enough? Did youeat enough? Okay, those have been
taken care of. Something's going on, so let's you know, let's slow
down, calm down, and let'sfigure out how we can reconnect. Yeah,
and do that. And he's alsoso smart. He's excellent at coating
(11:22):
and computers, and so he willcreate games and that sort of thing,
and he'll show us the games orwe'll try to have Brighton play those games
as well, which I think isjust incredible. Oh that's awesome. Yeah,
that's really cool. Are there anyfavorites for movie night in terms of
snacks or drinks? What are thego tos? Yeah, pizza for sure,
(11:43):
you know, and cheese pizza forthese guys. And then I like
to get a spinach tomato chicken pizzaokay, okay, and then twigs.
That seems to be a family popcorn. You gotta have a favorite popcorn sprite
for Sally and usually Skittles. Skittles. Yeah, yeah, so a lot
(12:09):
of junk food nice exactly. That'swhat movie night's for exactly. Veggies don't
really go with movies except for thespinds, right well. Yeah, and
even some might question you on that. I would not that some might question
that. That's really cool too.I think it's I'm I'm assuming you guys
(12:30):
have gone through seasons of where thechaos level is higher and lower, and
it seems whenever you have built inkind of checkpoints or rhythms like movie nights,
it seemed to be kind of anice opportunity to recenter and kind of
maybe maybe uh mellow out or whatam I trying to say, maybe the
(12:52):
bell curve of the chaos, youknow, maybe kind of there you go,
like try to find a middle spacethere. Yeah, And I think
that's that's helpful, Like I said, for I think any parent to be
thinking in those those regards. Sothat was really good insight. I'd like
to get into a little bit ofjust writing story and so tell us about
(13:13):
when she was born and kind ofwhat her that was like like was there
any indications, you know, thingslike that. Sure, no, absolutely
not. Everything was typically developing normal, uh pregnancy. I was highly monitored
because I was a geriatric pregnancy,so everything I was getting scans and doctor
(13:37):
Whitman's more often than a typical pregnancy, just based off of my age.
But nothing was indicating that there wasany questions or issues at all. I
went in to be induced, andoh man, I was in labor with
Sullivan for twenty hours, so Iwas kind of mentally prepared for that.
(14:01):
I think I was in labor fortwo hours with Brighton. She just came
roaring into the world. She waslike, I'm here, I'm ready,
let's go. In fact, let'sstart this party. I delivered her myself.
They were still trying to get thedoctor down the hall into our room,
so she was ready. She wasready now. Because she came out
so quickly, she didn't have enoughcontractions on her to help her with breathing.
(14:26):
So she did spend a week inthe pick you or NKW, and
she progressed very quickly. They didn'tthink any issues were from labor and delivery.
That was just kind of a shockinto the world and that she just
didn't get enough time to get herlungs pumping. You know, she quickly
(14:50):
progressed onto the seapath and then tothe nose canulet and then right off in
a day of observation and then home, so we didn't think twice about that.
Because of that, she kind ofhad issues with the suck swallow breathe
rhythm or pattern, so nursing waskind of difficult. So we mostly bottle
(15:13):
fed her. And I was anexperienced mom for breastfeeding. I breastfed Sullivan
for fifteen months or pumped when Iwent back to work, so you know,
breastfeeding to me was not something new, so I knew that she kind
of struggled with that. I justassumed it was from that abrupt jolt into
the world, but again didn't thinktoo much about it, So that's kind
(15:39):
of like something that was in thebackground. Around four months, I started
to suspect something was up. Shejust seemed really floppy. Every time I
tried to pick her up, itwas almost like she'd slipped through my hands,
and I was like, hmm,okay, this is a little odd.
And then at six months, shewas not reaching the milestone of sitting
up. She wasn't tried potting,she wasn't even attempting to try to sit
(16:00):
up. Now, she could rollover, she had head and neck control,
but she just wasn't seemed to beinterested in sitting up. And in
fact, we went to her pediatricianthey were like, oh, well,
maybe she's just on the back endof that milestone. And I really pushed
and I said, no, absolutelynot. I want to get her in
(16:21):
physical therapy. I want early intervention. I want to know what's going on.
I want to help her, youknow, like we could, we
could wait, but I really don'twant to. So I pushed for physical
therapy and I almost had to likeargue with her for it. And so
can I puasure if I can askyou, what was that drive at the
moment of saying I'm going to pushversus you know, maybe okay, maybe
(16:45):
it does, maybe just just giveit a couple more months. Great question.
I don't know if it's because Ihad Sullivan and she was my second
child, and Sally was sitting upin like shopping carts at four months.
So I don't know if it's becauseI had that experience and I was like
okay, or just my mom wasa special ed teacher. I have friends
(17:11):
who have other you know, differentfriends who have differences in their children,
and it's always like early intervention,early intervention. And I just was like,
if we could get ahead of this, then it'll just make it easier
in the long run. So justan intuition that says no, it's okay.
(17:32):
And so we were doing physical therapyand she actually was improving. She
was doing great, and we wewe thought she was doing quite well.
So that was like at the sixmonth mark. At that point, we
got on a wait list for aneurologist because good luck, good luck trying
to find what the underlying lying causewas. We were on a wait list
(17:53):
uh to get in, and wehad an appointment scheduled for her nine months,
like the day that she turned ninemonths old, and now she was
six months at the time, right, so that's how long we had to
wait. We had to wait tillSeptember. And during that period is kind
of when things started to unravel.She started to have what we thought was
(18:18):
as acid reflux. It ended upbeing she was vomiting a bottle here and
there, and so then we haddifferent rules about feeding. We didn't really
think of it as different rules.It was just like, well, she
needs to be sat up and weneed to make sure we really support her
and take your time and make sureyou burp her really well. And we
thought we were dealing with acid reflux, and because she was progressing well in
(18:44):
physical therapy and then she started havingthese episodes. We thought they were seizures.
We were told that they were not. Perhaps they were neurostorming, but
they were terrifying. It looked likeshe went offline. That's the only way
I can describe it. Where shelooked very confused. Her eyes were not
(19:04):
connecting. They were kind of searchingall over the room like she was lost
and she didn't know where she was. And then she would shake like trembling,
like she was cold, and shehad this terrible scream and it was
horrifying. And so that's when wemessaged the neurologists and they got us in
(19:26):
early. They got us in ateight months. They went in there,
they looked her over. They're like, oh, I don't know, probably
not a seizure because she's screaming,she's making noise, so you know,
maybe it's just gas or maybe it'sjust this. And we were going to
have a EEG. But the personwho did those was out that day and
so just come back at the regularscheduled appointment nine months. So I'm sorry.
(19:52):
That was like when she was aboutseven months old, so that month
her eight During that eight month,she started vomiting almost every single bottle,
every single feed, she was vomitingup and we again really didn't realize it.
We were trying to, you know, stay on top of it.
And so when we went back atnine months, Josh actually had was at
the airport. He had a businesstrip to go to. I went to
(20:15):
the appointment and she was having areally bad day. And honestly, I
think it was a godsend because whenthe neurologists came into the room, he
had she had vomited all over meand then he when he picked her up
and held her, she had anepisode in his hands, so he got
to see it firsthand. This isnot gas. Yeah, no, absolutely
(20:37):
not. And so it was alsoa blessing that we had gotten in just
a month prior because she was inthe tenth percentile weight. She was always
on the low end of weight,and she had dropped to the seventh percentile,
so she had dropped weight in thatmonth, not gaining like she should.
No, absolutely not. And youknow we saw it every day,
so it really didn't. I don'treally. I just thought she was a
(21:00):
tiny baby. He was very calm, and he said, you know,
I'm going to try to get youin at AUSHNA in New Orleans. You
know, I'm trying to get youin so you can get that MRI that
you need and EEG and maybe evenEKG and maybe we can do some genetic
testing to find out what's going onhere. Very calm, and I said
(21:21):
okay. And in fact, Idrove to Target. I remember I drove
to Target and I called a coupleof friends. I called Josh and said,
yeah, they think they're going toput us in the hospital. I
guess I don't know. And thedoctor called me back and said, yep,
they're waiting for you. You cango. I said, oh,
awesome, okay, And I said, oh, well, you know,
do I need to pack a bag? Should how long? How long do
(21:42):
you think? Oh? Yeah,yeah, you should definitely pack a bag.
Okay, Well how long do youthink you're going to be there?
Oh? Three days? Three days? And in fact I was telling Josh
like, oh, don't worry,I'll go It's okay. And he's like,
should I cancel my trip? Iwas like, I don't know,
I got it, no problem.Thankfully he canceled the trip and it came
with me. But those three daysended up being twenty days. Oh my
(22:04):
gosh. Yeah, and so werethey in that period of time? Did
that give them and the test thatthey needed to run? Yes? Was
that enough to get to a diagnosis? So during that twenty days she had
everything under the sun that you couldprobably think of, scan, swallow studies,
which she passed, brain MRI bloodtest. Both us gave blood and
(22:30):
I gave blood in urine. Shegave blood and urine EEG's ekg's that you
name it. She probably had itdone. Yeah, And in fact we
and she still continued to vomit.So she had the tube that goes down
your nose in to your stomach andshe still was vomiting. So then they
were recommending a G tube, whichI wish they had kind of explained better.
(22:53):
But we went ahead and opted forthe G tube. And that was
nerve wracking because that was her firstsurgery and she was only nine months old
yep. And so we left thehospital with new formula, a feeding machine,
and no diagnosis, and we werescared and we didn't know what was
going to happen. And then whenshe turned ten months old, we went
(23:15):
back to the geneticist and outpatient appointmentand she sat us down and she told
us what the diagnosis was, whichwas Lee's syndrome. It's l E I
g H Lee syndrome. And I'mone of those people who will google stuff,
right, so even when you're toldnot to. Yeah, I definitely
(23:36):
did, and I had thought thatit might be that. So as soon
as she said that, I justburst into tears because I knew what it
meant. And Josh didn't know becausehe was like, they told me not
to google, I'm not going togoogle. Yeah. So tell us for
someone listening and just briefly summarize inLayman's terms, what lee syndrome is and
(23:59):
how that impacts the body. Okay, So, Lee's syndrome is a rare
genetic mitochondrial disorder. It is lifelimiting and there is no cure. She
does not create ATP and what thatmeans is when you eat food, your
body creates ATP or energy from thefood. Her body does not do that
(24:21):
well. And she's a complex levelone, which means it's early in the
chain of events, which is notgood, which is why she had so
many issues so early on in herlife. There are different levels of Lee's,
or different complexes of Lee's where youcould be older sixteen or twenty or
even an adult where it might showup, and that usually means you're further
(24:44):
down in the chain. But yeah, her body doesn't create atp so her
and that affects everything. So hermitochondrial which is the powerhouse of the cell,
every cell, so about twenty percentof her cell are healthy and the
other are not because of this syndrome. Yeah, Josh, I want to
(25:07):
go to the the range of feelingsthat may have been present during those leading
up to those ten months, evenbefore a diagnosis, as dad, how
did that feel? Yeah, itwas very confusing. So Kelly had gone
back to work and I stayed homewith the Brighton as I work from home,
(25:30):
so it was you know, meworking in between you know, her
her naps and all of that,and I guess just being with her day
in and day out, you know, she would vomit. You know,
one thing is that Sully did too. So to me, it wasn't massively
(25:55):
out of the ordinary to have youknow, your your kid, you know,
throwing up, and it wasn't everytime. And I may have convinced
myself and everything that I had likelearned the secret because I got her to
stop throwing up as much as well, like just going really slow with her,
(26:15):
holding her, you know, kindof in a certain way and all
of that. But when the episodestarted and the screaming and all of that,
I mean I was, you know, just confused and angry and sad,
and you know, didn't know whatto do for my little girl.
(26:36):
You know, I'd hold her inmy arms and until she would stop,
and you know, didn't want tolet her go. And and when we
you know, got to the tothe hospital and everything, and you know,
came in from my trip thankfully Ihadn't flown out yet. Yeah,
(27:00):
Like I just I wouldn't leave her, you know, I stayed every single
minute in the hospital, you know, right right by her bed. And
I think it was just a lotof confusion, a lot of frustration as
I was, you know, justtalking to the doctors, taking them at
their word, you know, asthey were trying to figure out what was
(27:25):
going on and everything, and youknow, trying to do you know,
the best for her and ultimately youknow, getting her gtube and all of
that. But it was just alot of you know, fear, confusion,
and at the same time, liketrying to stay optimistic, like you
(27:48):
know, she's going to grow outof this and you know everything's going to
be fine, you know, notknowing you know any better, you know,
through that that stay and then whenthey told us what it was,
you know and not knowing. Ithink that the the hardest thing looking back
(28:14):
is that word progressive, you know, because I don't think I really understood
what that meant. And as I'veseen Brighton just you know, unravel and
disintegrate in front of our eyes ina lot of ways, it's just been
you know, just even more youknow, painful and breaking, and I
(28:49):
don't know, I think it's juststill a lot of you know, just
sorrow and anger over that that situation, you know, or that you know,
not that situation, the yeah situation. But yeah, looking back to
(29:14):
that time, just man, justso much you know, confusion. Yeah.
Yeah, what about for you,Kelly? Yeah, same because I
felt like I had done everything rightright. I was healthy and ate well,
and you know, I wasn't asactive with what I was with Selly's
(29:36):
pregnancy. But I should also saythat with Brighton, hers is considered a
spontaneous mutation. So I'm not acarrier, and Josh is not a carrier,
and my parents aren't carriers and hisparents are. This is the first
time we've ever even heard of this. We had no clue what this was,
(30:00):
so just a shock to system.I mean, I have been seeing
a counselor just to deal with theguilt. I think that you just carry
as a mom, like what couldI have done to change this? And
(30:22):
there's nothing. It's also ultimately changedme because I used to believe that everything
happens for a reason, and Idon't believe that anymore, which is also
a little bit freeing. I thinkit was hard initially, but honestly,
I think it's been a little bitfreeing to not hold on to that belief
(30:45):
anymore, because there's just nothing inmy life, or Josh's life, or
anybody's life that Brighton did to deservethis, And I think that letting that
go has really helped anyway. Yeah, but it does. It definitely has
(31:06):
changed me who I am as aperson. Well, and you it's to
point out to anyone listening, theguilt that you talked about carrying is obviously
undue guilt. It's guilt that puton put on yourself as that Mom and
Josh, I don't want to putword your mouth, but if I'm in
your shoes, I'm probably having someof that as well, just wanting to
(31:29):
be able to fix things and havingabsolutely no control on the ability to change
the situation. And I think forme, it's not guilt, it's anger
and that you know, it's theanger and not being able to you know,
to to doing things, especially earlyon, especially like a lot better
(31:51):
now, Like I talk to somebodyas well, you know, and have
somebody that helps me express all ofthis and work through it and everything.
But yeah, early on it's justlike you know, and I will say,
like has changed me as a persontoo, Like I think I have
a lot more empathy now for othersin their situation and what they're going through
(32:13):
and trying to find out, youknow, what's going on in their lives
as I talk to them because ofthis, Like you know, everybody is
wounded and everybody is hurt and thingshave happened in their lives. So just
to slow down and you know,ask a very important question, which is,
(32:34):
you know what don't I know?You know what don't I know about?
You know, your situation, mysituation, any situation just helps you
know so much. And you knowanother thing that I often, you know,
tell people. My dad actually askedme this. He asked me,
(32:58):
you know I write about it almostevery single day or right on you know
something. And I just posted onFacebook and he asked me why I do
that? And I don't think you'vemeant this, but basically he said,
like, you know, in mygeneration, nobody cares what you think or
what you feel. And I waslike, well, I write it because
(33:19):
people do care, and you know, and again I know my dad,
he didn't really meet anything by it. He just said it, you know,
it was what he was thinking.And I told him. I was
like, man, when I don'twrite, people message me and ask me
what's going on. When I do, right, they comment and they share
(33:45):
and they they want to know aboutit. And I was like, you
know what it's done for me isit has shown me that this world is
still a caring, empathetic kind placeand people are absolutely remarkable because if you
just pay attention to you know,the news and everything else, all you
(34:09):
hear is hate and vitriol. AndI'm like, my experience tells me that
is not the actual case, becauseI see, you know, my friends
who wouldn't agree, you know,politically on anything, rally around us and
you know, sin love and supportand everything. And it has just shown
(34:31):
me that, you know, withjust some kindness and some decency, people
are absolutely just amazing. Found thatsocial media is the best and worst of
(35:02):
humanity, and you will find whatyou're looking for and what you choose to
participate in. And it's so coolthat you have chosen that as an opportunity
to write and engage people in away that's positive and encouraging, and especially
in the midst of a situation whereit's probably extra difficult to be vulnerable enough
(35:30):
to do that on a regular basis. I'm guessing, yeah, it's hard,
but it is therapeutic. I found, you know, for myself too.
I think before this I wasn't veryvulnerable. I think before this I
(35:52):
didn't show a lot of emotion.I don't know if I do now show
a lot of emotion and everything.But I I find that if I just
sit down to journal and at leasttry like, it helps and then you
(36:20):
know, somehow, you know,it's obvious to me that others find it
to be helpful as well, bothin just understanding what we're going through,
but also you know, and someof our friends that have children that are
you know, disabled or whatever whateverwe call it nowadays, that they're like,
(36:45):
wow, you nailed it. Youknow, you absolutely nailed the emotion
that I'm going through or went throughor you know, And that's been amazing
because some of the people that havealready gone through this, you know,
tell me like, like all youremember later is the joy, and like
(37:08):
that really helps, you know,that helps a lot to like, you
know, not sit in your pain, but process your emotions, work through
the emotions, knowing that you knowthat joy is on the other side,
you know. And I think that'sthe other thing that I that I've really
(37:31):
learned in all of this, islike, you choose what you want out
of this life, and you chooseyour reality, Like you choose how you
see this world. You know,the events that are happening and everything you
like, you don't remember them.Perfectly. You know, you're you generalize,
(37:59):
you distore, do you do somany things. So if I'm going
to generalize and distort and and processinformation in all these different ways, and
I'm just gonna choose, you know, to make it, you know,
positive and to see the joy andto let you know. Somebody sent a
poem the other day that was talkingabout how you know, the the furrows
(38:24):
of sorrow, you know, digdeep, but then those become the well
of joy. And I just thinkthat's just powerful to just choose, like,
Okay, I'm gonna let that fillwith joy. I'm not gonna let
(38:46):
that feel with hate. I'm notgoing to feel let it fill with anger.
So even though I feel the angerand I feel the sorrow and I
feel everything else that's going on,I think I'm gonna process it. I'm
gonna move through it. I'm gonnaand I'm I am going to feel it
(39:10):
and like deeply, and I wanteverybody to know that, like feel it
deeply, like I think it's therefor you. At least somebody actually asked
me there, like what do youthink emotion is going through all of this?
And and I was like, theonly thing that I think of now
is like like more and more andmore is I think it's God trying to
(39:31):
communicate with you and that that's youknow what that emotion is. So if
you're feeling angry, he's feeling angryabout the situation, feeling sad, and
(39:51):
he's feeling sad and you're there justtogether and he's there to help you through
it. Yeah. So now I'mjust like I may not be able to
choose the positive in the moment,I may not be able to choose the
joy in the moment, but Iknow it's coming. Kelly, you mentioned
(40:23):
earlier the phrase that everything happens fora reason and how that's a shifted for
you. Yeah, and I knowthat faith is a personal thing for you
know, everybody has their own beliefs, And that has been a painful word
for me that I don't like whenpeople use that phrase because I've been that.
(40:45):
I have always wondered that, likethat's a great it feels like a
great saying in a Sunday school classroom, But when real life happens, when
the diagnosis comes, how do youhold up that phrase? And to know
that to pair that statement with Josh, what you just said about God,
(41:07):
reflecting like when I'm angry, whenI feel it, when I see the
injustice, it's a reflection of hisfeeling of the injustice. Like that's like
for me personally, that's a reassuringmoment of that I'm not as much as
it may feel it, I'm notalone fully, And so to hear you
(41:30):
say that is profound for me becauseI don't think I've really made that connection
of those two things. That phrasebeing such a stickler to me, like
I've just I don't normally push backor make a thing of it when somebody
says it, but I've felt that, and I don't think I've really made
the connection as to why until youjust said that. So thank you for
that and thanks for sharing that.That's I mean that the idea of giving
(42:00):
watering the joy even when the it'sbeing planted among sorrow is kind of a
beautiful picture. And I think oneof the most profound things that I've heard
of parents say in my experience withfamilies on this through goshout love is the
idea of joy and grief coexisting.Yeah, and I don't again, that's
(42:24):
one of those things that I hadn'treally thought about our processed, but that
it can and that it does,and there's times where it's it can be
maybe the balance doesn't feel like you'dwant it to be, but the idea
that you can grieve loss in whateverlevel but also still embrace the joy.
(42:45):
It's probably an intentional act and obviouslynot an easy one. But yeah,
I really appreciate you guys sharing thisconversation. And I know, especially in
such a sensitive I mean, it'sjust real and raw, and we've had
to leave families in the past,and they're dear families for us. Their
(43:12):
stories have made a big impact onme personally, and and I know that
they're unique. Every story is unique, but I just I understand the weight
that you guys are, the theweight of vulnerability to have this conversation,
and I appreciate it, and I'mgrateful for the opportunity. And I'm really
looking forward to our community getting ready, getting being able to shout load for
(43:37):
Brighton in February, and I'm excitedthat we'll get to introduce her to some
new friends and also that hopefully it'llbe an opportunity for you guys to connect
at a deeper level with those thatyou're already connected to those people that show
up and support you and your writing, and you know, there's just the
(43:57):
people that are part of your everydaylives. Give the new connecting point that
maybe at a deeper level that wasn'tthere before, just an opportunity for more
conversation. I also want to sayhow proud I am of us because after
that diagnosis wasn't soon after that shewas hospitalized again and then ended up with
(44:20):
her trake, And neither one ofus is from a medical background, and
we have learned so much and evenhave trained some of our nurses that we
have, and I'm just really proudof all of us and the strength and
the fortitude and just hard work.Yeah. Yeah, yeah. We ended
up spending what was it, anotherseventy days, seventy days in the hospital
(44:44):
the original yeah, yeah, yeah, when she had her trake. Yeah.
I mean that's actually the pretty powerfulstory too, because and I'll let
Kelly tell it, yeah, becauseit was you who went through it.
Yeah. So you know, wecame home with the diagnosis well after that
(45:07):
appointment, and then over Christmas sheended up having seizures and was not returning
to baseline, and we ended upgoing in and over Christmas and spending Christmas
there, and her sodium levels hadcompletely tanked out, and that has to
do with her Lee syndrome. She'son different a mitochondrial cocktail, different supplements
(45:30):
and vitamins, so they had toincrease that for her, and then they
send us home. And then shehad the flu, and then she got
over it, and then she wasstarting to vomit food again, and we
were like, we had the gtube. We felt like we were under control,
all that good stuff, and weput her down for a nap and
(45:53):
she ended up and I laying downnext to her, and she was in
her bed and I was in mine, and she ended up vomiting and asperating
on her vomit, and I performedCPR on her. I got up breathing
again, and ambulance came and wewent to the local hospital that was just
(46:15):
not equipped for pediatric and they dida chest X ray and said she's great
and send us home. And thenext day we woke up and her color
was just not right, and soI said we got to go back in.
So we went back in, thinkingit was all the way to New
Orleans, thinking that it was justgoing to be a gi issue because of
the vomiting, and maybe we haveto change her formula, maybe it's another
(46:37):
supplement thing. And we got thereand her oxygen was fifty five and then
the emergency room doctor was like,well, I don't know, given her
prognosis, do you mean she needsto be intubated? Do you guys really
want to do that? And wehad not even thought about that, wasn't
even a what does that mean?And thankfully we were both in tires,
(47:04):
were beside ourselves. Our little girlwas about to die in front of us.
The doctor is basically asking us,you know, do we want her
to live or not? We're notfully comprehending. And right at that time,
the pick you they had to pickyou walked into the er just a
(47:24):
turkey. Are another doctor, yep? Just to say hi. We She
was our same doctor from from Christmas. And she looked at the Brighton looked
at us. She was like,I know you what's going on? And
she was like, that baby's dying. Get her upstairs right now. She
said, what are you doing,intimator? Get her upstairs okay? And
(47:45):
she took charge. Doctor Ludy,she took charge and she saved Brighton's life
and because of that, you know, we got the tricky otomy trichyostomy done.
I still don't know which one itis. Had you know, like
Kelly said, we learned how tochange tricks, and we learned how to
(48:07):
take care of her more. Andwe've trained her and we helped in the
hospital train new respiratory tacks. Andprobably one of the coolest things is Brighton
got to go to Disney because ofall of this. Kelly was like like
making sure that Brighton got to goto Disney after after all this. But
(48:30):
it was a wonderful trip. AndI think, you know, that's one
thing to talk about real quick,because you know, we had said things
that Brighton likes and she loves snowWhite, she loves Pluto and Donald Duck
and b Louie and I mean wewatched Disney movies all the time, and
(48:52):
she loves to visit with the princessesand you know, just coop at them
and yeah, yeah, like allof that because you know, doctor Ludy
walked in right then and was justlike, what are you doing? Get
upstairs? Yeah, situation, whata blessing and timing goodness at go shout
(49:15):
love. We do amazing things foramazing families with kids on rare medical journeys.
Each month we Shout Love for familiesthrough the sale of creative apparel inspired
by the kids. This month's beautifullyBright design is inspired by Brighton, a
bubbly and sweet two year old fromMississippi whose smile brightens up every room.
(49:36):
Every purchase in February will go tohelp with outstanding medical bills and equipment for
Brighton not covered by insurance. Visitour website at go shout dot Love to
support Brighton through the purchase of aT shirt, hat, hoodie, or
other items.
Brighton just turned two years old,and one of the reasons we've picked her
name Brighton is because we initially sawit it said one who was loved,
and it just captured us. Wefound out later that's actually not true.
It means like bright town or youknow. Another one is London by the
(00:22):
sea, and since we lived bythe sea, I thought that was also
fitting, so we went ahead andstuck with Brighton. It just really I
thought captured her name. And thenher middle name is Rebecca, after Josh's
mother who had passed from colon cancer, so we were looking to honor her
and I really do think her nameis quite fitting for her personality. Her
(00:46):
name is quite fitting. Indeed,Hi everyone, my name is Seth Carnell
and welcome back to the Go ShoutLove Podcast. As we do every month,
we are here to talk about ourfeature kiddo and their family for February
of twenty twenty four, we aretalking about Brighton from past Christian, Mississippi.
Brighton is a happy two year oldand you can tell that because she's
(01:06):
always smiling. Her family describes heras bubbly and joyful, especially when her
big brother solely comes around. Thosetwo share an undeniably heartwarming bond. Today
we are talking with Josh and KellyBrighton's parents, who will paint a picture
for you on what life is likewith their kids, as well as take
you on their journey through Brighton's diagnosisof Lee's syndrome. If you have been
(01:32):
listening to our podcast, you willhave heard of lee syndrome before and know
a little bit about its uncertainty andwhat it means for young Brighton's life.
If you haven't, Josh and Kellydo a great job of describing what it
means and how that has influenced theirlives. Leading this conversation is Josh Veach,
our executive director of goh Shout Love. If you have a second,
(01:53):
please rate and review this podcast andshare it with a friend. Shouting love
means sharing these stories that matter.I love that you put so much thought
into the name. And there's anold guy that I knew that he always
said, don't let the facts getin the way of a good story.
So even if it doesn't mean whatyou originally thought, it meant like you
(02:14):
still have a reason behind it.So that's really cool. So what you
mentioned, how it's fitting to herpersonality Josh, how would you describe Brighton's
personality. Oh yeah, she's justa super happy, smiley girl, especially
when she's feeling you know good,you know, not having you know,
(02:35):
just autonomia, yeah, outbreaks orwhatever you want to call it. You
know, she's just normally just smiling, laughing, cooing, and you know,
it's a it's a lot of fun. You walk into the room and
she just lights up, you know, like this morning, you know,
sitting there and playing with her andeverything, and then Passion, one of
(02:59):
our nurses walked in and Brighton juststarts laughing and smiling at her like you're
here for me, you know,And I think that's a lot of fun
too. Is like she loves acrowd. Yeah, absolutely loves a crowd.
And you know, if a bunchof people are over here, she's
(03:19):
just like, you know, yellingand talking like everybody, you know,
get over here, see me.So she's a host y Yeah, absolutely,
yeah, hospitality. Yeah, she'sabsolutely blast. That's awesome. Kelly.
What would you add to her personality? Oh yeah, she's bubbly.
You know. We always say brightfor Brighton, and you know it's funny
(03:42):
because we were when we had hername. My parents are like, well,
what what's her nickname going to be? What's her nickname? Oh no,
she's going to be Brighton full name. We end up calling her bright
half the time. She's just sobubbly and she loves She is very social,
definitely a social butterfly. She lovesto smile and oh man, be
the center of attention. Absolutely awesome. When when I first got here and
(04:08):
was talking to Sole, the olderbrother, he was telling he was telling
he's almost going to be ten.That's right, He's coming up on ten,
which is a big deal. Andthen he was quick to pivot right
to Brighton and celebrate how she hadjust turned to and all the new things
that are come in with being twoand and so it's it was very evident,
very quickly that there's the bond betweenthe two of them. And so,
(04:30):
Josh, how would you describe thatbrother sister relationship with the two of
them? Yeah, I think thatI think Brighton's favorite person in the entire
world is Sally. There's just unmatchedjoy, you know, and happiness and
glee. When Sally comes downstairs inthe morning and you know she sees him,
(04:56):
it's just like the biggest you know, uh, you know, shriek,
shrill, you know, like,ah, there he is, you
know, he's coming to see me. And she just lights up like no
other than for him, and youknow, hitting him and kicking and you
(05:19):
know she's not a super active baby, but for him, she is.
Yeah, special bond. Yeah absolutely, ye Kelly, what about you?
Oh yeah, we just learned recentlythat she can yell. We had no
idea, and that's because Sally,when he comes down in the morning,
he says good morning to her.They have a you know, moment,
(05:42):
and then he usually goes and getson his computer, and but she wasn't
done hanging out with him, andshe was like yelling for him. And
then also he you know, he'samazing. He's incredibly helpful. He's very
observant. He he will he knowshow to work the feeding machine. He
actually knows how to suction her ifwe ever get in a bind. We
(06:05):
don't want to put that responsibility onhim. But he's so smart and so
attuned an in tune with her,and he just he just can make her
smile and light up like nobody elsecan. Yeah, we're going to get
into Brighton's diagnosis and some of thosethings here in just a second. But
(06:27):
while we're on the topic of siblingthat relationship. One of the things that
I've been talking with previous families thatgoing through, especially earlier in a diagnosis,
and adjusting to all the things thatcan come with that. It can
be tough on parents on how doyou maintain as much of a sense of
(06:50):
normalcy and connection and all those thingsthat go into having more than one child
when there's so much, especially shortterm, like in the adjustment phases,
of energy and focus that has togo into caring for your child that's now
in a rare medical journey. AndI'm curious how you guys have navigated and
(07:14):
are navigating that kind of element ofparenting another child and keeping investing in that
relationship as well as as well aspossible. Yeah, it is tough,
you know. One thing that Isee is like just you know, being
(07:36):
intentional paying attention. Sully is extremelysmart. I'm sure he's gonna come on
a little bit later and tell youall about it. But I think with
that smartness and everything actually or thatintelligence, he actually kind of makes it
(07:58):
easy on us because he helps outbecause he does all of those things and
I actually think he's pretty good atletting us know to like, you know,
hey, I need some attention now, you know, where another kid
you know may or may not beable to to kind of do that,
(08:20):
you know, and and you knowit'll come over and then sit with you,
and you know, like just straightup tell you, like, hey,
let's play a game together. Youknow, it's like oh okay,
yeah, you know, absolutely,like he needs me now, or he's
just he's a good communicator for hisage, like let's go to the store
(08:41):
together, Let's do this together.Hey, let's get you know, candy
for movie night, you know.And that's one thing we've we established as
we do a movie night either Fridayor Saturday night, usually Saturday night all
together, so that you know,we can we can have that, you
know. And there's just paying attention. And one thing that I've noticed is
(09:07):
things he can do himself, allof a sudden, he's asking you to
help him with. So just payingattention to those cues and everything to say,
oh okay, yeah, that's somethinghe can totally do himself. But
he's asking me, So there mustbe you know, a bigger reason yeah
for that. Yeah, Yeah,that's a really great point. That's a
(09:31):
great piece of advice I think forevery parent. I mean, I find
myself in that situation, get askedto do this or that, and it's
not actually on the top of thething list of things you actually want to
do in that moment. You actuallyhave other things that need to get done
or you want to do. Butlike reframing it and what they're really asking,
like you were saying, is Iwant time with you? Is like,
(09:52):
okay, you hear it different whenyou're recognizing that the underlying thing there
isn't really the thing, it's therelationship. What about you as mom?
Yeah, I would say that.Josh mentioned the movie nights. That's something
that we started when we were tryingto find things that we all do together
and kind of find a time toconnect. And also just you know,
(10:16):
given her situation, being out inpublic spaces can be difficult trying to keep
everybody healthy, So movie night wassomething that we could do all together.
And then usually we'll take Sully toDollar General and be like, all right,
pick out a COPD candy or twoand make it a little bit special.
Yeah, fun traditions, that's right, that's right. Things like that
(10:39):
he's an excellent reader, so hewill read to her. She loves that.
He also, you know, socan be so silly and playful and
she just we need that. Soit's amazing. And then to touch on
what Josh was saying, I wouldalso say that behavior is communitytion. So
(11:01):
if I notice that things are alittle bit off, first I'm like,
did you sleep enough? Did youeat enough? Okay, those have been
taken care of. Something's going on, so let's you know, let's slow
down, calm down, and let'sfigure out how we can reconnect. Yeah,
and do that. And he's alsoso smart. He's excellent at coating
(11:22):
and computers, and so he willcreate games and that sort of thing,
and he'll show us the games orwe'll try to have Brighton play those games
as well, which I think isjust incredible. Oh that's awesome. Yeah,
that's really cool. Are there anyfavorites for movie night in terms of
snacks or drinks? What are thego tos? Yeah, pizza for sure,
(11:43):
you know, and cheese pizza forthese guys. And then I like
to get a spinach tomato chicken pizzaokay, okay, and then twigs.
That seems to be a family popcorn. You gotta have a favorite popcorn sprite
for Sally and usually Skittles. Skittles. Yeah, yeah, so a lot
(12:09):
of junk food nice exactly. That'swhat movie night's for exactly. Veggies don't
really go with movies except for thespinds, right well. Yeah, and
even some might question you on that. I would not that some might question
that. That's really cool too.I think it's I'm I'm assuming you guys
(12:30):
have gone through seasons of where thechaos level is higher and lower, and
it seems whenever you have built inkind of checkpoints or rhythms like movie nights,
it seemed to be kind of anice opportunity to recenter and kind of
maybe maybe uh mellow out or whatam I trying to say, maybe the
(12:52):
bell curve of the chaos, youknow, maybe kind of there you go,
like try to find a middle spacethere. Yeah, And I think
that's that's helpful, Like I said, for I think any parent to be
thinking in those those regards. Sothat was really good insight. I'd like
to get into a little bit ofjust writing story and so tell us about
(13:13):
when she was born and kind ofwhat her that was like like was there
any indications, you know, thingslike that. Sure, no, absolutely
not. Everything was typically developing normal, uh pregnancy. I was highly monitored
because I was a geriatric pregnancy,so everything I was getting scans and doctor
(13:37):
Whitman's more often than a typical pregnancy, just based off of my age.
But nothing was indicating that there wasany questions or issues at all. I
went in to be induced, andoh man, I was in labor with
Sullivan for twenty hours, so Iwas kind of mentally prepared for that.
(14:01):
I think I was in labor fortwo hours with Brighton. She just came
roaring into the world. She waslike, I'm here, I'm ready,
let's go. In fact, let'sstart this party. I delivered her myself.
They were still trying to get thedoctor down the hall into our room,
so she was ready. She wasready now. Because she came out
so quickly, she didn't have enoughcontractions on her to help her with breathing.
(14:26):
So she did spend a week inthe pick you or NKW, and
she progressed very quickly. They didn'tthink any issues were from labor and delivery.
That was just kind of a shockinto the world and that she just
didn't get enough time to get herlungs pumping. You know, she quickly
(14:50):
progressed onto the seapath and then tothe nose canulet and then right off in
a day of observation and then home, so we didn't think twice about that.
Because of that, she kind ofhad issues with the suck swallow breathe
rhythm or pattern, so nursing waskind of difficult. So we mostly bottle
(15:13):
fed her. And I was anexperienced mom for breastfeeding. I breastfed Sullivan
for fifteen months or pumped when Iwent back to work, so you know,
breastfeeding to me was not something new, so I knew that she kind
of struggled with that. I justassumed it was from that abrupt jolt into
the world, but again didn't thinktoo much about it, So that's kind
(15:39):
of like something that was in thebackground. Around four months, I started
to suspect something was up. Shejust seemed really floppy. Every time I
tried to pick her up, itwas almost like she'd slipped through my hands,
and I was like, hmm,okay, this is a little odd.
And then at six months, shewas not reaching the milestone of sitting
up. She wasn't tried potting,she wasn't even attempting to try to sit
(16:00):
up. Now, she could rollover, she had head and neck control,
but she just wasn't seemed to beinterested in sitting up. And in
fact, we went to her pediatricianthey were like, oh, well,
maybe she's just on the back endof that milestone. And I really pushed
and I said, no, absolutelynot. I want to get her in
(16:21):
physical therapy. I want early intervention. I want to know what's going on.
I want to help her, youknow, like we could, we
could wait, but I really don'twant to. So I pushed for physical
therapy and I almost had to likeargue with her for it. And so
can I puasure if I can askyou, what was that drive at the
moment of saying I'm going to pushversus you know, maybe okay, maybe
(16:45):
it does, maybe just just giveit a couple more months. Great question.
I don't know if it's because Ihad Sullivan and she was my second
child, and Sally was sitting upin like shopping carts at four months.
So I don't know if it's becauseI had that experience and I was like
okay, or just my mom wasa special ed teacher. I have friends
(17:11):
who have other you know, differentfriends who have differences in their children,
and it's always like early intervention,early intervention. And I just was like,
if we could get ahead of this, then it'll just make it easier
in the long run. So justan intuition that says no, it's okay.
(17:32):
And so we were doing physical therapyand she actually was improving. She
was doing great, and we wewe thought she was doing quite well.
So that was like at the sixmonth mark. At that point, we
got on a wait list for aneurologist because good luck, good luck trying
to find what the underlying lying causewas. We were on a wait list
(17:53):
uh to get in, and wehad an appointment scheduled for her nine months,
like the day that she turned ninemonths old, and now she was
six months at the time, right, so that's how long we had to
wait. We had to wait tillSeptember. And during that period is kind
of when things started to unravel.She started to have what we thought was
(18:18):
as acid reflux. It ended upbeing she was vomiting a bottle here and
there, and so then we haddifferent rules about feeding. We didn't really
think of it as different rules.It was just like, well, she
needs to be sat up and weneed to make sure we really support her
and take your time and make sureyou burp her really well. And we
thought we were dealing with acid reflux, and because she was progressing well in
(18:44):
physical therapy and then she started havingthese episodes. We thought they were seizures.
We were told that they were not. Perhaps they were neurostorming, but
they were terrifying. It looked likeshe went offline. That's the only way
I can describe it. Where shelooked very confused. Her eyes were not
(19:04):
connecting. They were kind of searchingall over the room like she was lost
and she didn't know where she was. And then she would shake like trembling,
like she was cold, and shehad this terrible scream and it was
horrifying. And so that's when wemessaged the neurologists and they got us in
(19:26):
early. They got us in ateight months. They went in there,
they looked her over. They're like, oh, I don't know, probably
not a seizure because she's screaming,she's making noise, so you know,
maybe it's just gas or maybe it'sjust this. And we were going to
have a EEG. But the personwho did those was out that day and
so just come back at the regularscheduled appointment nine months. So I'm sorry.
(19:52):
That was like when she was aboutseven months old, so that month
her eight During that eight month,she started vomiting almost every single bottle,
every single feed, she was vomitingup and we again really didn't realize it.
We were trying to, you know, stay on top of it.
And so when we went back atnine months, Josh actually had was at
the airport. He had a businesstrip to go to. I went to
(20:15):
the appointment and she was having areally bad day. And honestly, I
think it was a godsend because whenthe neurologists came into the room, he
had she had vomited all over meand then he when he picked her up
and held her, she had anepisode in his hands, so he got
to see it firsthand. This isnot gas. Yeah, no, absolutely
(20:37):
not. And so it was alsoa blessing that we had gotten in just
a month prior because she was inthe tenth percentile weight. She was always
on the low end of weight,and she had dropped to the seventh percentile,
so she had dropped weight in thatmonth, not gaining like she should.
No, absolutely not. And youknow we saw it every day,
so it really didn't. I don'treally. I just thought she was a
(21:00):
tiny baby. He was very calm, and he said, you know,
I'm going to try to get youin at AUSHNA in New Orleans. You
know, I'm trying to get youin so you can get that MRI that
you need and EEG and maybe evenEKG and maybe we can do some genetic
testing to find out what's going onhere. Very calm, and I said
(21:21):
okay. And in fact, Idrove to Target. I remember I drove
to Target and I called a coupleof friends. I called Josh and said,
yeah, they think they're going toput us in the hospital. I
guess I don't know. And thedoctor called me back and said, yep,
they're waiting for you. You cango. I said, oh,
awesome, okay, And I said, oh, well, you know,
do I need to pack a bag? Should how long? How long do
(21:42):
you think? Oh? Yeah,yeah, you should definitely pack a bag.
Okay, Well how long do youthink you're going to be there?
Oh? Three days? Three days? And in fact I was telling Josh
like, oh, don't worry,I'll go It's okay. And he's like,
should I cancel my trip? Iwas like, I don't know,
I got it, no problem.Thankfully he canceled the trip and it came
with me. But those three daysended up being twenty days. Oh my
(22:04):
gosh. Yeah, and so werethey in that period of time? Did
that give them and the test thatthey needed to run? Yes? Was
that enough to get to a diagnosis? So during that twenty days she had
everything under the sun that you couldprobably think of, scan, swallow studies,
which she passed, brain MRI bloodtest. Both us gave blood and
(22:30):
I gave blood in urine. Shegave blood and urine EEG's ekg's that you
name it. She probably had itdone. Yeah, And in fact we
and she still continued to vomit.So she had the tube that goes down
your nose in to your stomach andshe still was vomiting. So then they
were recommending a G tube, whichI wish they had kind of explained better.
(22:53):
But we went ahead and opted forthe G tube. And that was
nerve wracking because that was her firstsurgery and she was only nine months old
yep. And so we left thehospital with new formula, a feeding machine,
and no diagnosis, and we werescared and we didn't know what was
going to happen. And then whenshe turned ten months old, we went
(23:15):
back to the geneticist and outpatient appointmentand she sat us down and she told
us what the diagnosis was, whichwas Lee's syndrome. It's l E I
g H Lee syndrome. And I'mone of those people who will google stuff,
right, so even when you're toldnot to. Yeah, I definitely
(23:36):
did, and I had thought thatit might be that. So as soon
as she said that, I justburst into tears because I knew what it
meant. And Josh didn't know becausehe was like, they told me not
to google, I'm not going togoogle. Yeah. So tell us for
someone listening and just briefly summarize inLayman's terms, what lee syndrome is and
(23:59):
how that impacts the body. Okay, So, Lee's syndrome is a rare
genetic mitochondrial disorder. It is lifelimiting and there is no cure. She
does not create ATP and what thatmeans is when you eat food, your
body creates ATP or energy from thefood. Her body does not do that
(24:21):
well. And she's a complex levelone, which means it's early in the
chain of events, which is notgood, which is why she had so
many issues so early on in herlife. There are different levels of Lee's,
or different complexes of Lee's where youcould be older sixteen or twenty or
even an adult where it might showup, and that usually means you're further
(24:44):
down in the chain. But yeah, her body doesn't create atp so her
and that affects everything. So hermitochondrial which is the powerhouse of the cell,
every cell, so about twenty percentof her cell are healthy and the
other are not because of this syndrome. Yeah, Josh, I want to
(25:07):
go to the the range of feelingsthat may have been present during those leading
up to those ten months, evenbefore a diagnosis, as dad, how
did that feel? Yeah, itwas very confusing. So Kelly had gone
back to work and I stayed homewith the Brighton as I work from home,
(25:30):
so it was you know, meworking in between you know, her
her naps and all of that,and I guess just being with her day
in and day out, you know, she would vomit. You know,
one thing is that Sully did too. So to me, it wasn't massively
(25:55):
out of the ordinary to have youknow, your your kid, you know,
throwing up, and it wasn't everytime. And I may have convinced
myself and everything that I had likelearned the secret because I got her to
stop throwing up as much as well, like just going really slow with her,
(26:15):
holding her, you know, kindof in a certain way and all
of that. But when the episodestarted and the screaming and all of that,
I mean I was, you know, just confused and angry and sad,
and you know, didn't know whatto do for my little girl.
(26:36):
You know, I'd hold her inmy arms and until she would stop,
and you know, didn't want tolet her go. And and when we
you know, got to the tothe hospital and everything, and you know,
came in from my trip thankfully Ihadn't flown out yet. Yeah,
(27:00):
Like I just I wouldn't leave her, you know, I stayed every single
minute in the hospital, you know, right right by her bed. And
I think it was just a lotof confusion, a lot of frustration as
I was, you know, justtalking to the doctors, taking them at
their word, you know, asthey were trying to figure out what was
(27:25):
going on and everything, and youknow, trying to do you know,
the best for her and ultimately youknow, getting her gtube and all of
that. But it was just alot of you know, fear, confusion,
and at the same time, liketrying to stay optimistic, like you
(27:48):
know, she's going to grow outof this and you know everything's going to
be fine, you know, notknowing you know any better, you know,
through that that stay and then whenthey told us what it was,
you know and not knowing. Ithink that the the hardest thing looking back
(28:14):
is that word progressive, you know, because I don't think I really understood
what that meant. And as I'veseen Brighton just you know, unravel and
disintegrate in front of our eyes ina lot of ways, it's just been
you know, just even more youknow, painful and breaking, and I
(28:49):
don't know, I think it's juststill a lot of you know, just
sorrow and anger over that that situation, you know, or that you know,
not that situation, the yeah situation. But yeah, looking back to
(29:14):
that time, just man, justso much you know, confusion. Yeah.
Yeah, what about for you,Kelly? Yeah, same because I
felt like I had done everything rightright. I was healthy and ate well,
and you know, I wasn't asactive with what I was with Selly's
(29:36):
pregnancy. But I should also saythat with Brighton, hers is considered a
spontaneous mutation. So I'm not acarrier, and Josh is not a carrier,
and my parents aren't carriers and hisparents are. This is the first
time we've ever even heard of this. We had no clue what this was,
(30:00):
so just a shock to system.I mean, I have been seeing
a counselor just to deal with theguilt. I think that you just carry
as a mom, like what couldI have done to change this? And
(30:22):
there's nothing. It's also ultimately changedme because I used to believe that everything
happens for a reason, and Idon't believe that anymore, which is also
a little bit freeing. I thinkit was hard initially, but honestly,
I think it's been a little bitfreeing to not hold on to that belief
(30:45):
anymore, because there's just nothing inmy life, or Josh's life, or
anybody's life that Brighton did to deservethis, And I think that letting that
go has really helped anyway. Yeah, but it does. It definitely has
(31:06):
changed me who I am as aperson. Well, and you it's to
point out to anyone listening, theguilt that you talked about carrying is obviously
undue guilt. It's guilt that puton put on yourself as that Mom and
Josh, I don't want to putword your mouth, but if I'm in
your shoes, I'm probably having someof that as well, just wanting to
(31:29):
be able to fix things and havingabsolutely no control on the ability to change
the situation. And I think forme, it's not guilt, it's anger
and that you know, it's theanger and not being able to you know,
to to doing things, especially earlyon, especially like a lot better
(31:51):
now, Like I talk to somebodyas well, you know, and have
somebody that helps me express all ofthis and work through it and everything.
But yeah, early on it's justlike you know, and I will say,
like has changed me as a persontoo, Like I think I have
a lot more empathy now for othersin their situation and what they're going through
(32:13):
and trying to find out, youknow, what's going on in their lives
as I talk to them because ofthis, Like you know, everybody is
wounded and everybody is hurt and thingshave happened in their lives. So just
to slow down and you know,ask a very important question, which is,
(32:34):
you know what don't I know?You know what don't I know about?
You know, your situation, mysituation, any situation just helps you
know so much. And you knowanother thing that I often, you know,
tell people. My dad actually askedme this. He asked me,
(32:58):
you know I write about it almostevery single day or right on you know
something. And I just posted onFacebook and he asked me why I do
that? And I don't think you'vemeant this, but basically he said,
like, you know, in mygeneration, nobody cares what you think or
what you feel. And I waslike, well, I write it because
(33:19):
people do care, and you know, and again I know my dad,
he didn't really meet anything by it. He just said it, you know,
it was what he was thinking.And I told him. I was
like, man, when I don'twrite, people message me and ask me
what's going on. When I do, right, they comment and they share
(33:45):
and they they want to know aboutit. And I was like, you
know what it's done for me isit has shown me that this world is
still a caring, empathetic kind placeand people are absolutely remarkable because if you
just pay attention to you know,the news and everything else, all you
(34:09):
hear is hate and vitriol. AndI'm like, my experience tells me that
is not the actual case, becauseI see, you know, my friends
who wouldn't agree, you know,politically on anything, rally around us and
you know, sin love and supportand everything. And it has just shown
(34:31):
me that, you know, withjust some kindness and some decency, people
are absolutely just amazing. Found thatsocial media is the best and worst of
(35:02):
humanity, and you will find whatyou're looking for and what you choose to
participate in. And it's so coolthat you have chosen that as an opportunity
to write and engage people in away that's positive and encouraging, and especially
in the midst of a situation whereit's probably extra difficult to be vulnerable enough
(35:30):
to do that on a regular basis. I'm guessing, yeah, it's hard,
but it is therapeutic. I found, you know, for myself too.
I think before this I wasn't veryvulnerable. I think before this I
(35:52):
didn't show a lot of emotion.I don't know if I do now show
a lot of emotion and everything.But I I find that if I just
sit down to journal and at leasttry like, it helps and then you
(36:20):
know, somehow, you know,it's obvious to me that others find it
to be helpful as well, bothin just understanding what we're going through,
but also you know, and someof our friends that have children that are
you know, disabled or whatever whateverwe call it nowadays, that they're like,
(36:45):
wow, you nailed it. Youknow, you absolutely nailed the emotion
that I'm going through or went throughor you know, And that's been amazing
because some of the people that havealready gone through this, you know,
tell me like, like all youremember later is the joy, and like
(37:08):
that really helps, you know,that helps a lot to like, you
know, not sit in your pain, but process your emotions, work through
the emotions, knowing that you knowthat joy is on the other side,
you know. And I think that'sthe other thing that I that I've really
(37:31):
learned in all of this, islike, you choose what you want out
of this life, and you chooseyour reality, Like you choose how you
see this world. You know,the events that are happening and everything you
like, you don't remember them.Perfectly. You know, you're you generalize,
(37:59):
you distore, do you do somany things. So if I'm going
to generalize and distort and and processinformation in all these different ways, and
I'm just gonna choose, you know, to make it, you know,
positive and to see the joy andto let you know. Somebody sent a
poem the other day that was talkingabout how you know, the the furrows
(38:24):
of sorrow, you know, digdeep, but then those become the well
of joy. And I just thinkthat's just powerful to just choose, like,
Okay, I'm gonna let that fillwith joy. I'm not gonna let
(38:46):
that feel with hate. I'm notgoing to feel let it fill with anger.
So even though I feel the angerand I feel the sorrow and I
feel everything else that's going on,I think I'm gonna process it. I'm
gonna move through it. I'm gonnaand I'm I am going to feel it
(39:10):
and like deeply, and I wanteverybody to know that, like feel it
deeply, like I think it's therefor you. At least somebody actually asked
me there, like what do youthink emotion is going through all of this?
And and I was like, theonly thing that I think of now
is like like more and more andmore is I think it's God trying to
(39:31):
communicate with you and that that's youknow what that emotion is. So if
you're feeling angry, he's feeling angryabout the situation, feeling sad, and
(39:51):
he's feeling sad and you're there justtogether and he's there to help you through
it. Yeah. So now I'mjust like I may not be able to
choose the positive in the moment,I may not be able to choose the
joy in the moment, but Iknow it's coming. Kelly, you mentioned
(40:23):
earlier the phrase that everything happens fora reason and how that's a shifted for
you. Yeah, and I knowthat faith is a personal thing for you
know, everybody has their own beliefs, And that has been a painful word
for me that I don't like whenpeople use that phrase because I've been that.
(40:45):
I have always wondered that, likethat's a great it feels like a
great saying in a Sunday school classroom, But when real life happens, when
the diagnosis comes, how do youhold up that phrase? And to know
that to pair that statement with Josh, what you just said about God,
(41:07):
reflecting like when I'm angry, whenI feel it, when I see the
injustice, it's a reflection of hisfeeling of the injustice. Like that's like
for me personally, that's a reassuringmoment of that I'm not as much as
it may feel it, I'm notalone fully, And so to hear you
(41:30):
say that is profound for me becauseI don't think I've really made that connection
of those two things. That phrasebeing such a stickler to me, like
I've just I don't normally push backor make a thing of it when somebody
says it, but I've felt that, and I don't think I've really made
the connection as to why until youjust said that. So thank you for
that and thanks for sharing that.That's I mean that the idea of giving
(42:00):
watering the joy even when the it'sbeing planted among sorrow is kind of a
beautiful picture. And I think oneof the most profound things that I've heard
of parents say in my experience withfamilies on this through goshout love is the
idea of joy and grief coexisting.Yeah, and I don't again, that's
(42:24):
one of those things that I hadn'treally thought about our processed, but that
it can and that it does,and there's times where it's it can be
maybe the balance doesn't feel like you'dwant it to be, but the idea
that you can grieve loss in whateverlevel but also still embrace the joy.
(42:45):
It's probably an intentional act and obviouslynot an easy one. But yeah,
I really appreciate you guys sharing thisconversation. And I know, especially in
such a sensitive I mean, it'sjust real and raw, and we've had
to leave families in the past,and they're dear families for us. Their
(43:12):
stories have made a big impact onme personally, and and I know that
they're unique. Every story is unique, but I just I understand the weight
that you guys are, the theweight of vulnerability to have this conversation,
and I appreciate it, and I'mgrateful for the opportunity. And I'm really
looking forward to our community getting ready, getting being able to shout load for
(43:37):
Brighton in February, and I'm excitedthat we'll get to introduce her to some
new friends and also that hopefully it'llbe an opportunity for you guys to connect
at a deeper level with those thatyou're already connected to those people that show
up and support you and your writing, and you know, there's just the
(43:57):
people that are part of your everydaylives. Give the new connecting point that
maybe at a deeper level that wasn'tthere before, just an opportunity for more
conversation. I also want to sayhow proud I am of us because after
that diagnosis wasn't soon after that shewas hospitalized again and then ended up with
(44:20):
her trake, And neither one ofus is from a medical background, and
we have learned so much and evenhave trained some of our nurses that we
have, and I'm just really proudof all of us and the strength and
the fortitude and just hard work.Yeah. Yeah, yeah. We ended
up spending what was it, anotherseventy days, seventy days in the hospital
(44:44):
the original yeah, yeah, yeah, when she had her trake. Yeah.
I mean that's actually the pretty powerfulstory too, because and I'll let
Kelly tell it, yeah, becauseit was you who went through it.
Yeah. So you know, wecame home with the diagnosis well after that
(45:07):
appointment, and then over Christmas sheended up having seizures and was not returning
to baseline, and we ended upgoing in and over Christmas and spending Christmas
there, and her sodium levels hadcompletely tanked out, and that has to
do with her Lee syndrome. She'son different a mitochondrial cocktail, different supplements
(45:30):
and vitamins, so they had toincrease that for her, and then they
send us home. And then shehad the flu, and then she got
over it, and then she wasstarting to vomit food again, and we
were like, we had the gtube. We felt like we were under control,
all that good stuff, and weput her down for a nap and
(45:53):
she ended up and I laying downnext to her, and she was in
her bed and I was in mine, and she ended up vomiting and asperating
on her vomit, and I performedCPR on her. I got up breathing
again, and ambulance came and wewent to the local hospital that was just
(46:15):
not equipped for pediatric and they dida chest X ray and said she's great
and send us home. And thenext day we woke up and her color
was just not right, and soI said we got to go back in.
So we went back in, thinkingit was all the way to New
Orleans, thinking that it was justgoing to be a gi issue because of
the vomiting, and maybe we haveto change her formula, maybe it's another
(46:37):
supplement thing. And we got thereand her oxygen was fifty five and then
the emergency room doctor was like,well, I don't know, given her
prognosis, do you mean she needsto be intubated? Do you guys really
want to do that? And wehad not even thought about that, wasn't
even a what does that mean?And thankfully we were both in tires,
(47:04):
were beside ourselves. Our little girlwas about to die in front of us.
The doctor is basically asking us,you know, do we want her
to live or not? We're notfully comprehending. And right at that time,
the pick you they had to pickyou walked into the er just a
(47:24):
turkey. Are another doctor, yep? Just to say hi. We She
was our same doctor from from Christmas. And she looked at the Brighton looked
at us. She was like,I know you what's going on? And
she was like, that baby's dying. Get her upstairs right now. She
said, what are you doing,intimator? Get her upstairs okay? And
(47:45):
she took charge. Doctor Ludy,she took charge and she saved Brighton's life
and because of that, you know, we got the tricky otomy trichyostomy done.
I still don't know which one itis. Had you know, like
Kelly said, we learned how tochange tricks, and we learned how to
(48:07):
take care of her more. Andwe've trained her and we helped in the
hospital train new respiratory tacks. Andprobably one of the coolest things is Brighton
got to go to Disney because ofall of this. Kelly was like like
making sure that Brighton got to goto Disney after after all this. But
(48:30):
it was a wonderful trip. AndI think, you know, that's one
thing to talk about real quick,because you know, we had said things
that Brighton likes and she loves snowWhite, she loves Pluto and Donald Duck
and b Louie and I mean wewatched Disney movies all the time, and
(48:52):
she loves to visit with the princessesand you know, just coop at them
and yeah, yeah, like allof that because you know, doctor Ludy
walked in right then and was justlike, what are you doing? Get
upstairs? Yeah, situation, whata blessing and timing goodness at go shout
(49:15):
love. We do amazing things foramazing families with kids on rare medical journeys.
Each month we Shout Love for familiesthrough the sale of creative apparel inspired
by the kids. This month's beautifullyBright design is inspired by Brighton, a
bubbly and sweet two year old fromMississippi whose smile brightens up every room.
(49:36):
Every purchase in February will go tohelp with outstanding medical bills and equipment for
Brighton not covered by insurance. Visitour website at go shout dot Love to
support Brighton through the purchase of aT shirt, hat, hoodie, or
other items.
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