March 12, 2024 • 64 mins
Shout love for Elias!
Elias, lovingly known as Eli, is a seven-year-old kid from Bloomfield, Indiana who loves arts and crafts, playing outside, and sweet treats!
In today's episode we are talking with the parents to Eli and they are going to walk us through everything from Eli's personality, what he likes what he doesn’t like…and of course his medical journey from day one until now.
Throughout March, we’ll be shouting love for Eli to raise awareness for his rare medical journey with 9p24.3 duplication, aspiration/dysphagia, and autism.
Elias, lovingly known as Eli, is a seven-year-old kid from Bloomfield, Indiana who loves arts and crafts, playing outside, and sweet treats!
In today's episode we are talking with the parents to Eli and they are going to walk us through everything from Eli's personality, what he likes what he doesn’t like…and of course his medical journey from day one until now.
Throughout March, we’ll be shouting love for Eli to raise awareness for his rare medical journey with 9p24.3 duplication, aspiration/dysphagia, and autism.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
Adam and Tia, thank you somuch for being on the Go Shot Love
Podcast. We're super excited to getto meet you guys and have you introduce
yourselves to our audience, and solet's start with that. Tell us,
Tia, tell us a little bitabout your family. Introduce us to your
husband and kids. So this isAdam and this is Elias. He likes
(00:25):
to go Bye. Eli. Wehave an eleven year old named Wyatt,
and we have a two year oldnamed Enzo and a six month old named
Finley. And then we have threebonus babies with us right now. Awesome.
(00:46):
And what's the range? Yeah,what's the what's the age range of
those bonus non babies? So oneis eight, one is turning six in
a week, and the other onejust turned three. Awesome. Okay,
so you have a busy house,thank god, yes at all times.
(01:15):
Welcome back everyone to the Go ShoutLove Podcast, where today we are talking
about our feature kid for the monthof March twenty twenty four, Elias,
or more affectionately called Eli, andso lucky you. In this episode you
will get to hear a good amountfrom Eli himself, and I will be
the first to tell you his personalitywill shine through as he joins the conversation
(01:38):
for the first part. So getready to smile and get ready to fall
in love with this little boy's personality. It will captivate you. Today we
are talking with Adam and Tilla,who are the parents to Eli, and
they are going to walk us througheverything Eli, from his personality, you
know what he likes and doesn't like, and of course his medical journey from
day one until now. Eli isdiagnosed with and I hope I say this
(02:01):
right nine p. Twenty four pointthree duplication which also comes with aspiration dysphagia,
autism, and with the name beingthat tough, I'm not going to
even attempt to tell you what itmeans. I'm going to leave that to
Adam and Tilla, who are goingto get us great insight into all of
that. As you heard, Eliis surmounded by a large, loving family
(02:23):
with some siblings and then some more. They will talk about that as well.
Leading this conversation is Josh Beach,our executive director of Go Shout Love.
As always, you can go toour website Go Shout dot Love and
browse our store. Every purchase inthe month of March will go towards supporting
Eli and his therapies which are notcovered by insurance. And what do you
(02:49):
like to do as a family forfun? What's the fun stuff that the
family is doing. Get ice cream? Ice cream is a good choice.
Can go to a movie see uh? And go to a game place.
He's talking about an arcade. Welike to and it had my friend Toby.
(03:17):
Toby gets to go to We reallylike I mean, we like to
play outside. We have a lotof fun outdoors. We also really enjoyed
the library. We're always at thelibrary. We really enjoy to play with
(03:43):
our chickens and and Pet our chickens, okay high pet one. And we
like to go to church. Oneof our favorite things to do times a
week is to go to church.Yeah, awesome, Eli. Do you
like going to church as well?Yeah? I have to ask, since
(04:06):
you brought up chickens, Eli,if there is a if you have named
them? Do you have names foryour chickens? One? Why is that?
Well, it actually has. Itgoes by a couple of names.
Started with the mister Cockadoo and nowI think we've switched over to big Red,
(04:28):
our biggest chicken. We have ourbiggest first one, big one,
more bigger, but not our labone. We're about to about to get
a whole bunch more, aren't we. Oh boy, buy some little chicks?
(04:54):
Yeah, me too? Hands Yeah, Eli is big? Read your
favorite? You do. I wasgonna say roosters don't. They don't.
My limited experience with the roosters saysthey don't love to be pet but I
(05:15):
could be wrong about that. Theydon't. Oh man, Well, okay,
Adam, let me ask you aquestion about Eli. How would you
describe Eli's personality? Oh? Man, he is he has quite the personality.
(05:35):
He's quite the character. Uh.He's always just like extremely positive and
everything that we get to do,he's very uplifting. And I don't know,
like I mean you think you thinkof a Honestly, he's just like
a light, you know, alight in our lives. He's always a
(05:59):
you think it would be hard withthe things that he's had to endure stuff,
but he's he's always just very personable, always trying to make you laugh,
and it's just something special. It'sa true blessing just to see him
like this. So even when timesget kind of hard with me and Tia,
you know, like he just alwaystries to make a smile. Yeah,
(06:20):
his sickness gets a little dreary,but he's just such a happy guy.
Yeah, I always up. That'sa good That is such a good
characteristic Eli. That is something thatwill always make everybody's day is when they
see a smile. So that's cool, Diah, what would you add,
(06:44):
He's definitely a little comedian. Yeah, I can tell. Eli's just he's
very compassionate. He cares a lot, and you know, one of the
things we always say to people islike, the one of the only things
he can eat his whip cream becauseit's safe for him. But yeah,
but he will always share it.I mean, you know, it's he
(07:10):
knows that whip cream is like histhing, and he never backs away from
sharing it with somebody who asks forit. He's just he's super punny,
is what we call him. Wewe teach him puns and then, you
know, because he has a differentway of learning and a different way of
(07:34):
understandingding things. He's very literal,so puns to him were very confusing for
a long time, but to himand he just thinks they're really fun.
He's just bouncy and bubbly. There'sjust a lot to him. That's so.
(07:56):
Is it safe to say he's he'swell on his way to have a
good uh, a good library ofdad jokes? You bet, he's very
much. He's very much that kid. He also likes to say things like
see you later, alligator, andthen he'll like, rhyme, what's another
(08:24):
one? Hi, it's one ofyour favorite goodbye sings. Piece. That's
one of the things he loves isto sing piece of things that he says.
That's so great at home, Scout, that's a great one. Oh
my goodness, that's great. Hi, dial wild dial afodile. Have you
(08:56):
ever seen Lyle Lyle crocodile? Yes, yeah, because shot with a dark
Oh yeah yeah. My son's nameis Lyle, and I haven't seen it.
But he gets called that. Hehears that a lot. He hears
(09:18):
Yeah, yeah, I think so. All right, So now I'm gonna
make it a little tougher on youguys, and we're gonna I'm gonna ask
you. I'm gonna ask you tosummarize Eli's personality into three words each.
So Mom, you're up first.You have to You can just use three
(09:39):
words to describe Eli what are yousaying? Oh man, goofy, sweet,
compassionate? What all right? Dad? You're up? It's gonna be
hard to be That pretty much summarizeshim. But I'll do. I'm gonna
(10:05):
go a little crazy. He's gota crazy personality. We'll do do caring,
cares about others and how they feel, and then we'll do mm hmm,
I'm gonna go with snugly. Snuglyman, Eli, those are some
(10:28):
big words to describe you. Thatsounds like you're a pretty cool dude.
All right, Eli, I haveanother question for you. We talked about
a little bit. What of yourfamily likes to do and going to the
movies and get ice cream and thosesort of things in church? Eli,
what do you like to do ifit's just you and you're by yourself?
What are you doing for fun?Play outside and play pudge and play on
(11:00):
the train only? I mean,okay, you can do black flips?
Can you do backflips? I can'tonly do a lolling soon. I don't
like this walling thing I do allover the place, just all over the
(11:28):
place. Huh. I was tryingit at turch I like I was trying
to do a handstand and did youdo it? It didn't laugh for long.
It's didn't last for long. Ifell on my belly. Oh yes,
(11:54):
okay, where's the second? What'sthe second thing that you said you
like to play? Was that PaulPatrol? Is that what you said?
Yeah, my pops, we hadthe inflation? Okay, who's your favorite?
Who's your favorite? On there?Hays and Marshall and Zooma and Lucky
(12:20):
and Sky and Lighter. They're allpretty great. They're all pretty great,
aren't they. One of the reallycool things about you is what's one of
your favorite hobbies? You did ittoday with Ariel? What did you do?
I make a good ol stix andlatinum and orange paper. He's art.
(12:43):
He loves art. Oh yeah,awesome. That sounds like fun.
So you like you like doing craftsand stuff like that. Yeah, yeah,
that sounds like a lot of fun. All right, let's it's sounds
like Eli. You have a lotof brothers and sisters in your house.
(13:05):
Yeah, what's it like to haveso many people in your house that love
you and that you love? WhenI walk by myself, I do applay
with some he will say, NowI want someone else to two people how
(13:33):
does it feel to have so manysiblings? But that's what he's asking.
Wow, loud, I hate hyyou get a headache, Ellie Day.
(13:56):
You know what, Eli? Ilove your honesty. He is honest to
a fullt like it's anything. Hejust can't tell you anything else. Yeah,
but I mean, you know,I if I were to ask,
I'm sure, Uh, Tia,Adam or you guys say, at the
at the right time, you probablyhave had a couple of headaches from a
(14:16):
loud house. That's probably a fairstatement, right. Oh my gosh,
Tia, tell me what how wouldyou describe the relationship that Eli has with
his siblings. Oh, you know, he's He's the one everybody asked to
play. He's the easiest one toget along with, unless you're the three
(14:41):
year old who doesn't want to sharewith anybody. But otherwise he's he's very
I don't know, he's just easyfor them to all play with. He
doesn't ever really start any bicker fightsor anything. He's just you think,
(15:03):
so well, so maybe maybe there'sthat honesty. There's that honesty coming back
right there. Oh my god,that was fun. Guy. I think
he was playing with you. Idon't think that qualifies as fine. I
(15:24):
said that was okay, I haveOh yeah, yeah, yeah. He's
just kind of just you know,fun to play with and very He always
has new ideas. I had anew idea for our party. We can
(15:46):
get ike. He's I don't know, and and they all just have such
a special love for him just becauseof all that he's been through, and
they're like to help take care ofhim, especially when he's sick. And
he's sick a lot. So yeah, Deacon, don't think it, Faya.
(16:10):
I get well, when he's sick, he plays a lot of video
games because he can't really do toomuch. So Deacon say, when I
playing a game, he will saythat not nice on it? Not Faya.
(16:32):
Yeah, Well, hey, itsounds like you've got a silver lining
there that you found. If you'regoing to be sick, you might as
well get to play some video games. Right. That doesn't mean that's not
fun being sick, but that's asilver lining. Do you know what that
means? I like, you wantto play video game right now, but
(16:53):
I can't. Well, do youwant to go play outside with them?
Because that's what they're doing. Whydo you go do that? No?
I think Charlotte's outside you go out. That was That's perfect timing. That
was so great. Yeah. Ilove his personality. Yeah, he's he
(17:21):
makes us all happy. We're reallyblessed by that. He has such a
good mentality about everything he visits,like mentally cannot I mean he can feel.
He can feel sadness. Okay,you can do your whip cream.
He can feel sadness, I meanhe does, but he just can't feel
(17:45):
anger like I mean, he doesn't. He's just and he definitely goes through
his frustration, you know, likenot being able to do some of the
things that the other kids get todo, but it doesn't angry. It
comes out sad, you know,and then you can really talk to him.
(18:10):
He doesn't understand that he can't eat. He always tries, he always
wants to. I think that's thehardest part with his autism diagnosis is that
mentality wise, he doesn't grasp thatit's not safe to eat, because you
know, when he gets a holdof something or whatever, he'll often choke
(18:33):
or become really sick from aspiration andhe won't understand why. So that's that's
probably the hardest. But when youtell him no or you we try really
hard not to tell him no,we try to find an alternative. He
(18:53):
takes it pretty well, you know, he he tries to be understanding to
you and like what you want,not necessarily what's happening to him. So
and guy was a three year old. Yeah, so we're gonna come.
(19:18):
I want to come back to someof the medical stuff here in just a
second. But since you've already liketouched on the foods side of things and
his eating and then he even alreadysaid that he loves whipped cream and suckers,
that's such a hard thing. Imean for any kid. Gosh,
even if it were an adult,right, Like, it'd be hard to
(19:38):
have to be so limited in yourfood. How have you guys, navigated
that and and how do you tryto help him enjoy as many flavors as
possible without and like I Tia,you'd said on the call the other day
that trying to avoid it making himfeel like it's a punishment when it's really
(20:00):
auxer you all about his protection.How do you navigate that with a lot
of prayer, to be honest withyou, and then you know, we've
prayed for new ideas and when onefails, because you know kids in general,
you can do something for so long, but they're going to get bored.
So in the beginning, it wasjust kind of plain. Whip cream
(20:23):
was was great. He was allabout it. We'd go to restaurants,
and we tried not to go totoo many, but sometimes you just when
we would be at appointments or something, we would have to stop, and
some of the restaurants just began toknow him and they would bring out a
bowl of whipped cream and that wassuper special to him. Sure, and
(20:45):
then that got boring, and sothen we'd navigate to like putting chocolate on
the whipped cream, you know,just a little drizzle or a few sprinkles.
We have to be careful with addingdifferent textures to the whip cream.
He can't swallow it very well.And then we started finding flavored whip cream,
(21:10):
like you know, all these ortarget or places like we'll have specialty
during certain types of seasons. Andthen recently we found that if we add
a little bit of pudding flavor tothe whip cream, he can have different
flavors, and so that's been prettyexciting for him. But we really just
(21:33):
try to find different alternatives suckers.We've you know, hunted high and low
for just all kinds of different suckersand flavors, and I really just don't
like the amount of sugar, soI find a lot of ones online that
are healthier options. And then wealso had the idea to find him different
(21:56):
flavors of toothpaste, like there's justwhen he's brushing his teeth, you know.
We found like vanilla cupcake, andthey're like a healthier version to it.
But it's just we just do alot of research. And funny enough,
one of the things he did foryears was he would he would lick
(22:18):
ice packs, you know, toget the sensation of being cold on his
mouth during the summer. And thatwas one thing he did for a long
time. And right now we're ableto do a little bit of thicken liquids.
Whether he drinks it or not isthe is the struggle part. So
(22:41):
we'll have to put it through speedingto and he doesn't. But he's been
able to drink a little bit more, and so we've been finding like kind
of healthier flavors for that, onesthat are I just I don't want him
to I don't know. We justdo a lot of digging, do a
(23:03):
lot of research, and when heasks rates and he gets sick, we
have to backtrack and only do youknow, a little bit, and he'll
get to the point where he can'ttolerate the even the whip cream, so
we move back to just suckers.But if we can't do anything, we
just honestly, we have a switchthat was given to him because he was
(23:26):
in the hospital all the time,and so we pull that out and we'll
let him have specialty times. It'sjust we do a lot of like navigating.
Plus we've hired staff that work withus. He has autism therapy,
and he has nurses, and theyall tried to make his days just super
(23:48):
special by bringing just all kinds ofdifferent activities with them and redirecting him in
a loving way. That's awesome.Food is like such a major part of
our culture, you know, likeeverything you do involves food, whether it's
right going out with family or likecelebrating birthdays or even going camping. You
(24:14):
know, like food is a majorthing, right. But I think it's
really great because our entire community thatdoes know him, like especially our church,
they try to work with us onfinding ways to keep him involved,
so that way he'll get to participatewithout being felt like feel like he's left
out. You know. Yeah,man, what a great what a really
(24:37):
cool thing just to be loved bypeople in such a way that they recognize
that feeling. And that's got tobe that has to feel great as parents
to see other people recognize that andkind of come to your support and come
to your aid and say we're goingto do that with you as well,
Like we're going to help accommodate andmake sure that he's included in ways that
(25:00):
he didn't that you can't control,but they're helping helping him feel involved.
That's got to be something special aboutthat. It's definitely an answered prayer.
We prayed for a long time tohave a community who just loved on him
in such a strong way. Yeah, So this is one of the things
(25:21):
I wanted to touch on. You'vementioned that your church and your faith play
a big role in your in yourin your day to day lives. Just
talk a little bit more about howwhether it's church or your your local community,
tell us a little bit more abouthow that group of people, what
they mean to your family, andwhat it's been like to have them support
eli. You know, I'd probablyhave to go back a little bit,
(25:48):
if that's okay with you, tokind of sure how we got to where
we are. So let's go backand do let's talk about his medical journey,
and then we'll come back to aswe do that you can show to
talk about where they've showed up foryou. And that does that sound good?
Yeah, we can do that.That would be a little easier.
Yeah, awesome. So so tellme about when kind of about his medical
(26:11):
journey and when you first kind ofrecognized anything of concern. So when I
was pregnant with him, with Elias, I we don't we still don't know
to this day if this played anyrole in it. But I did have
a pulmonary embolism, a blood clotin my lun and I was on bed
(26:33):
rest and you know, for mostof my pregnancy. So when he was
born, we took precautions and Ihad already had one emergency sea section prior,
and since I had the blood clot, we went ahead and just had
a sea section plan. And whenhe was born, he we thought everything
(26:57):
was fine. He was seven poundsfive ounce, is healthy, just adorable
baby. You didn't cry right away, but they got him to cry pretty
quickly. But when he was broughtto my room, he just sounded off
and I mentioned it to him andthey kind of took a listen to him
(27:19):
and they you know how they arein the hospital, They don't make things
sound severe, right. They kindof just took him out, said they
were gonna just check him over.Ended up having to put him in the
nick you because he had fluid inhis lens. Well, the theory was
that it was a c section,and that's just what happens. And you
(27:41):
know, we had prior experience withchildren, or with a child. Our
oldest aspirated and got pneumonia quite abit, but he was pretty He was
pretty safe with it because we learnedthat well we needed to do was thick
in his liquids, and he wasokay. So I didn't really think too
(28:06):
much about it while I was inthe hospital. We stayed for almost a
week and then they sent him home. They had put him on anibiotics,
got him healthy and he was onhis way. Well, it was about
two about a week later, maybecloser, No, I think entirety he
(28:30):
was two weeks old, so Ithink it was about another week. One
night, I was up all nightand I just I was dealing with some
postpartum blues, so I was secondguessing some things. He was having purple
blue episodes. It was nighttime,the lighting in our home wasn't very bright,
(28:52):
so I don't I thought that Iwas seeing things, but maybe I
was just overreacting. But his chestwas concaving in an unnatural way, and
I just held him. I stayedawake all night and I held him.
And then that next morning, Iwas still awake. I was sitting in
(29:15):
the chair with him and a recliner, and I was kind of just sitting
there with my eyes closed. ButI was awake and having a conversation with
my four year old at the time, and opened my eyes and Eli wasn't
breathing, and of course I wasa little stunned for a second, I
(29:37):
didn't really know what I was seeing. And then I yelled for ad him.
I'm more screamed for him, andhe took him from me and took
him to the floor and immediately kindof just was drostling him and trying to,
you know, get him to breathe. And then I took over and
(29:57):
I kind of did some chest compressand I was able to get him to
kind of breathe. It wasn't verywell. He was rushed to the hospital
stayed a week to be discharged withthe UH to be discharged with the diagnosis
of reflex. They had experienced hisblue episodes as well. In the hospital.
(30:22):
They wouldn't do a swallow study,even though at that point my brain
took me to my other son andwas like, we need a swallow study.
They wouldn't do it. So theysent him home on an athneum monitor
and the first night it went off, he stopped breathing again, and it
was it was going off multiple times, you know, like, seriously,
is this thing just malfunctioning or what? No, Yeah, we didn't realize
(30:48):
it was actually him is two droppingconstantly Like we were made to believe that
that wasn't the case, you know, that it was just reflex. So
we took him or he was rushedto Riley Children's Hospital in Indianapolis, and
they immediately did an echo cardiogram anda swallow study, and he failed the
(31:11):
swallow study completely. He failt alltypes of liquids and he ended up on
a feeding tube nasal feeding to Heended up on that feeding to until he
was six months old, and theyhe kept failing the swallow studies, and
so they did and a G twoat that point, and by the time
(31:32):
that he was one, we weren'ttolerating any type of foods, even when
he started eating by mouth, sothen he was put on like real foods
through the stomach. But by thetime that he was two, we were
failure to thrive. He wasn't gettinganybody. He was vomiting NonStop. We
(31:57):
started to see bee stuff. Hewas self harming a lot. He would
hit his head on the walls andscream. He never slept, and so
then we started doing some genetic testingand we went and saw a couple of
new doctors outside of the gi wewere seeing. He saw developmental and we
(32:22):
saw an E. N T andpulmonologist. At the time, Eli's lungs
weren't doing so hot because he wasstill asperating because we were going through some
beeding therapy trying to see if wecould strengthen things, and he found that
he had a hole in his airway. They called it a lour angual cleft,
(32:43):
and so they told us that henot only needed a J two,
but he because his stomach just wasnot working well. But he needed a
repair on his airway, so wewe had throat surgery done and at the
(33:07):
same time they put a J tubein which goes through his intestines. And
so during that procedure, his airwayswelled and we found out he has reactive
airway disease. And he ended upon a ventilator. And you said he
(33:29):
was two at this time, Isthat right? Yes, he was too,
and so he uh, he nearlydied from that when they tried to
remove the event he coded, butyou know, by the grace of God,
he was revived and he ended upwith double pneumonia from the ventilator.
(33:55):
And he always ends up with pneumoniawhen they mess around in his lungs.
I don't want to say always,but more times than not, Uh,
he does. But we came backfrom that, and you know what,
the next year, year or two, he was the healthiest we'd ever seen
him. He was diagnosed with autismand adhd uh and that opened the doors
(34:21):
for a lot of good therapy.He was able to start some recreational therapy
to teach him how to play.Uh. Elias does not understand social cues
very well, and and they wereable to help him work through all of
that because it made all of hismedical stuff a lot harder when they would
(34:44):
try to treat him at the hospitalor anything. And that's where a lot
of his self, you know,harming behaviors were coming from. And he
didn't speak until he was u aboutfour and a half. One of the
cool stories I like to tell people. I don't know that it's a story,
(35:06):
but one of the cool things aboutEli is Eli did not speak at
all. He said kind of somemumbo jumbo words, you know that he
would just like mumble over. Hewould, you know, try to He
would mimic your speech a lot.But he never functionally talked to you.
(35:27):
But one of the things that healways did was we would sing this this
song. It's completely spacing you rightnow. His favorite song. Sure,
he has a lot of favorites now, but it's a oh my, raise
(35:47):
a Hallelujah. Sorry, it justcompletely left in my brain, which is
crazy, raise a Hallelujah. Uh. I don't remember who it's by,
but he just love that song andwe would play it all every time he
was in the hospital and every timehe was sick. And he could sing
(36:07):
that song, but he never spoketo us. And it was just such
an empowering song because if you knowthe song, it's about a little boy
who got sick and was and hewas healed eventually. And I didn't know
that when he was singing that songuntil someone told me. He was like
(36:28):
five years old at that point andsomeone's like, do you know what that
song's about? And it was justsuch a powerful, a powerful thing because
he'd just been singing that song foreverand it really was what kept the light
in his eyes, you know,when he was really sick. And so
(36:50):
we kind of went on for twoyears then, not super sick. He
was out and about. He waswalking, Well, he did you store
braces on his ankles? He hashave low tone? Couldn't. Yeah,
he didn't start walking into it twoand a half. Yeah, it took
him a while. And then wefound out that there was a potential diagnosis
(37:16):
of a genetic disorder, but theydidn't know if it had anything to do
with anything. It was kind ofa They did a ray of tests and
they kind of found it on theback burner, like it wasn't what they
were looking for, so they didn'tknow if it played any part. And
then fast forward to maybe both beingChristmases ago, we started doing feeding therapy.
(37:46):
We decided he was healthy enough thatwe want to do some intensive feeding
where he could be under the microscopeand we wouldn't be doing it at home.
They could really watch what you're doing. Little did we know that this
would be the beginning of a lotof sickness for him. It's almost like
(38:06):
it disrupted his body and he endedup very sick. He was hospitalized like
three or four times within the spanof a couple months. And was it
last year? It was last year, and he started having episodes at night
(38:28):
where he would vomit between like oneand three in the morning, and he
wouldn't be awake, and we Ishould mention in the span of his seven
years of life, we have foundhim unconscious and blew five times and I've
had to do chest compressions three orfour of those times, and so he
(38:59):
you know, we started doing alot of testing and starting to try to
figure out what was going on.We went to different children's hospitals and most
recently we went to the Mail Clinicand they have a lot of ideas.
They have a lot of thoughts.They didn't get to do as much as
they wanted to do while we werethere, so now we are in the
(39:21):
process of doing more. So Iguess fast forward to now is Eli is
still dealing with Pneumonia's gets pneumonia morethan he should. He was recently sick
again, but we're also dealing witha new symptom that came on with his
(39:45):
heart. His heart is way fasterthan it should be when he's just setting
and so actually right now he's wearinga heart monitor for two weeks to see
what's going on. He has struggleswith his oxygen keeping it up. The
(40:06):
theory is is that he's working toohard to keep his oxygen up. So
that's kind of where we're at now. But through all that, we've been
at our church for two years,and in the beginning before we went to
this church, we went to achurch prior to that, which was amazing
as well, But we were justpraying for a community that would love on
(40:31):
our family for as different and asyou know, crazy as it was.
We were just and at the timewe only had two boys, but we
knew that the Lord was calling usto bring more children into our family,
and people really thought that was crazyof us with a sick child, but
(40:52):
we just knew that, like,we could not sit in the hard and
just not move forward. We couldn't. We couldn't do that to Alias.
We couldn't make his sickness the centerof our world. We need. Yeah,
we did that for two whole years, just kind of sitting in despair
and hopelessness because if we weren't gettingany answers from him, you know,
(41:13):
and he wasn't getting any healthier,and yeah, we're just kind of we're
just kind of over it. Likewe finally figured out a way to just
pray about it and give it toGod and trust in Him to just kind
of take over Elie for us too. You know, we were assured,
you know, thank God. Andthat's really kind of where our faith started
(41:35):
taking off. We had went througha miscarriage because it was in twenty nineteen.
He had been sick. He wehad found out we were pregnant,
very nervous, you know, wedidn't know if this child would have you
know, sicknesses. But then youknow, I miscarried and it really just
(41:59):
sent us, it knows, divedus right into just Okay, we can't
do this anymore, like loss ofa child, sick child. It was
just it felt like we needed somethingmore. And that's where we really,
(42:20):
i mean really really dove into ourfaith. And so then we prayed for
a church that would just be rightthere with us. And you know,
God had been calling us to fosterfor years to really help a child,
maybe with special needs, because weknew so much, and we kept wondering,
like, what are we going todo with all of this knowledge after
(42:45):
Eli? Because we truly believed Eliis going to be healed and we still
do to this day. And whatthat looks like, we don't know.
But and so was it November?It was October of twenty twenty one,
twenty twenty one, Yeah, no, twenty twenty two. Well, a
(43:06):
couple months before that, we heardabout a little boy that had a brain
injury, and our agency that wewere we signed up with asked us if
we wanted him. He was upfor adoption. He was only a few
months old at that time. ByOctober when we did get him, he
(43:29):
was nine months old, and Ikid you not, it was like the
beginning of so much more in ourlife. With Endzo became two nurses,
and where we lived, we couldn'tfind any nurses for Eli. Ever,
we hunted high and low, andthere comes our ends and with two nurses
(43:52):
who have now become Eli's nurses,and they just fall all over him.
And they've went with us to Minnesota. They come with us to his doctor's
appointments. They advocate for him leftand right. They you know, they're
just one of them, stays overnightsa lot. It's just that was such
(44:13):
a blessing all on its own.And then our church just poured into our
foster child. At the time,he wasn't adopted yet. We fostered two
other kiddos, a teenager and afour year old for a short period and
then and those sibilings were removed andthey asked us if we wanted them,
(44:36):
But I should say I was pregnantat that time. I got pregnant after
years of infertility struggles, and soit was just crazy. And one whole
year we got five children, andour church just stayed with us the entire
time. They you know, theypoured into us and all sorts of ways.
(45:01):
They one of the ladies from ourchurch who does our Sunday school with
our kids went to Grandparents' Day forone of our foster children. Like they
showed up with meals. They didmeal train after meal train. Financially,
they poured into our foster children,brought us clothes, got brought. I
(45:23):
mean it was just from going justme, Adam and our two boys doing
it on our own. I wasalways at the hospital by myself because Adam
couldn't take off work, couldn't leaveWyat. He is now able to go
(45:45):
with us, and we have morechildren than we used to and he can
now come with us. And it'sjust there's so many blessings. I mean,
the Lord says there's going to beblessed and all the suffering. He
promises that all throughout the Bible,and we are truly seeing the through of
(46:06):
that. There is blessings in thesuffering. I can tell you that we
are a lot happier now, eventhough Eli is having more symptoms and still
sick, we are all entirely,our whole family is happier now than before.
So that's kind of where our faithis. So it sounds like you
(46:32):
have really found the answers that youneeded in terms of relationship and support in
this church and especially over the lastcouple of years then, yeah, yeah,
extremely, like it's been such anextreme part of our extreme Serrong one,
(46:55):
such an important part, yeah,of our daily life. And it's
there are family. I never reallyknew what that really was when people would
say, what you know, churchfor a long time for us was what
(47:15):
you did on Sunday. Now it'sjust our life and the church isn't the
building, it's the people in it. Yeah, and we've really discovered that
and it's a I'm assuming it's adifferent level of community than you've ever experienced.
Then if that's the way that they'reshowing up for you, yeah,
most definitely. Yeah, that's awesome. I want to come back to a
(47:38):
piece Tia that you had mentioned interms of Eli having to be resuscitated.
I think you said five times,is that right? So yeah, I
had to do chest compressions maybe threeor four of those times. But he's
had blue episodes five times in hislife. One of those times I was
(48:02):
able to get him, like Ijust sat. It was in the middle
of the night and he was sleepingon my floor and so I could keep
an eye on him. And thatwas before we got him a medical bed
and I just sat him up andhe was able to start breathing on his
own, but the other times I'vehad to physically chest compress him to where
(48:23):
he would breathe again. So thatis something that is nothing short of traumatic
for you, I'm sure, andeven Adam, for you or anybody who
witnesses that. And so it's thatis doing or even seeing that done is
terrifying and comes with it its ownweight. But when it's your own child,
(48:46):
especially, I can only imagine thatthe layer the level at which I'm
so sorry, my recording just stoppedrandomly, This is not going well,
I'm so sorry. You what theenemy doesn't want these stories told, So
(49:07):
that's what's going to happen. Okay, So I'm going to reset that just
to make sure that it didn't wedon't lose it. So we're good now.
So seeing or performing CPR is aterrifying thing for anybody, and I
can only imagine that it's when it'syour own child, how much even more
(49:28):
significantly traumatic that is. And soI'm just curious, how have you,
how have you managed that that weightof such significant moments for someone you love
so dearly. Oh, that's athat's a tricky one. I didn't deal
(49:52):
with it well at first. Ihonestly, I didn't deal with it the
first time that I ever had todo it when he was two weeks old,
which I had no idea what Iwas doing. Since then, now
I am CPR and first rate certified, but I I just kind of went
(50:13):
with instincts when he was two weeksold. But I am never really dealt
with it, to be honest withyou. We were in such that we
were in the thick of just figuringout that he had health concerns. We
were in the thick of the sicknessand not really focusing on ourselves at that
point. Would you describe that asthis pure survival mode? Oh? Yeah,
(50:37):
survival mode. I mean, you'reyou're going through these traumatic experiences every
single time, like he's getting sickin the hospital and vomiting, and it's
just so much emotional toll on you. You kind of just turn it all.
Yeah, you kind of just becomeautomated to it, you know.
I didn't realize that I had turnedoff any type of freak out, any
(51:02):
type of when it would happen,I would go into pure Okay, this
is what we're going to do.This is how we're going to do it.
This is what's happening until our nursestays overnight just looked at me,
like, how, how, howare you doing this right now? You
know, our one of our therapiststhat works with our son went with me
(51:27):
to a procedure where they have toswitch out the J two. They like
to keep people awake while they doit. They say it's not supposed to
hurt, but for our son,it's extremely painful. He screams louder than
I've ever heard him scream during thoseand I had since then told them that
he has to be sedated for it, but I I had been We we
(51:49):
go through those procedures every four months, and she went through it with me,
and I didn't even think to warnher, and she was a little
traumatized from it, and she justcould not believe that I'd been doing it
by myself, because they can onlyhave one you know, they usually can
only have one person, and actuallythey can look to but Adam had to
stay out with our son, andso she went in with me to help.
(52:15):
And I just I think that priorto really diving deep into my faith
in finding our family, at church, I just survival mode, and then
since then it's been coming in wavesof grief and trying to understand the bigger
(52:38):
picture of why our child could besick. Definitely, don't take anything for
granted, you know, like nothing, your health, anything that you have
in life is a blessing. AndI think the biggest thing that He's taught
me is even though your life canget super stressful, you feel anxious everything,
(53:00):
you know, God Gud's there,He's with you, he's living living
it with you, and all youhave to do is just surrender to Him
to be strengthened, you know,just appreciate what He has given you in
life. Yeah, and literally takeit day by day like the future.
(53:23):
You don't know what the future holds, and all you can do is live
in the now. And I mean, honestly, that's I think that's the
biggest thing I've taken from it.Yeah, Tia, what about you?
What has Eli taught you about life? You know, I don't like the
lesson I've learned from it, ifI'm going to be honest with you,
(53:45):
Because the lesson I have learn isthat God is still good even if Elias
doesn't make it through this, youknow, God forbid that. But I've
had fear constantly, you know,the what if my baby dies? You
(54:08):
know, I mean that's your worstfear as a parent. We're always doing
everything we can to protect our children, right like people who don't have children
with health concerns. It's where thatsunscreen, you know, to protect from
the sun, all all the simplethings that you do, whereas sunscreen just
(54:34):
I laugh at it, but Ialways try to remember to apply it,
but I just laugh because for Alias, it's like we have absolutely no control,
right, like, yeah, justapply some sunscreen or a band aid
and it's going to be okay.We have no idea what's going to happen,
and that takes away all the controlas a parent. And Eli has
(55:00):
really shown me what light looks like, what that there is so much good
in something that looks so that looksso dreary, that doesn't look good at
all. Like you know, Icould look at Eli every day and just
(55:21):
grieve him, which I was doing, yeah, you know, and I
didn't want to do that anymore.I mean, and I want to know
that there's going to be good evenwhile he's sick, and there there is,
He's taught me that there's just somuch good, you know. I
when he is sick, he isstill his goofy self that you were talking
(55:42):
to earlier. He does he doesnot change. He's he looks sick,
but he's just taught me that likeit, it's just our our broken human
ways, you know, and evenchildren can get sick. It happens to
(56:06):
children. You know. We don'twant it to, but it does.
So yeah, yeah, it seemslike there are I love your honesty in
terms of saying that you don't likethe lesson that you've learned, because it's
certainly yeah, it's it's this realizationthat that it's really hard and it's unfair,
(56:27):
and it's not the season, andthis this situation is not at all
what you would sign up for.But then you see the perspective shifts that
can come from that, and eveneven the goodness in it is a I'm
sure a breath of fresh air whenyou can see that Eli can point you
(56:52):
in that direction. What a coolcoincidental of a blessing is that while he's
the one going through it, he'salso the one teacher that's a that's a
cool thing. I want to wrapup with one more question for you,
guys. This is a another onethat I want to for you to both
(57:13):
answer and Tia, I'll start withyou on this one. But what do
you love most about Eli? Andwhat do you love about getting to be
his mom? Oh? What Ilove most about Eli is everything I I
(57:36):
think. Really, I love howhis brain works. He well, I've
told you before, he's very literal, but he also has such an artistic
mind. How he figures things out, how he writes, how he draws,
is very It just gives you aa picture of what he sees in
(58:00):
his brain. It's such a beautiful, beautiful picture of how he is and
who he is. And I justI love seeing his I just love seeing
the beauty and him come out andhow he talks to you. And I
(58:25):
just love how his brain works.I love being his mom because he He's
just a miracle. And I'm gratefulthat the Lord's given me a child who
(58:45):
is a miracle. He's a testimonyof God's faith and love and what a
gift, you know, And allchildren are gifts. Don't get me wrong,
I obviously love children, but havingbeing able to have a testimony of
(59:07):
the miracle is just it's amazing.It's uh, it's a what is it
bettersweet little you know, you don'treally want to go through that, but
it's just still that's yeah, that'sawesome. Thank you for that. All
right, Adam, your turn forthe tough one. What do you love
(59:30):
most about Eli and what makes youmost proud to be his dad? Man,
I'll definitely agree with Tia. Likehis uh, I'm gonna name him
quirks. Yeahs are definitely amazing,you know, just getting in too know
him and his uniqueness. But I'mgonna have to go with just his his
(59:52):
what do you call it, hiscourage? Honestly, like, no matter
where he is, what he's doing, if he's healthy or sick, if
he's just he's always so brave andcourageous. And he expresses that in what
he does, whether it's singing ordancing or drawing or anything. He just
(01:00:15):
he shows everyone what it means tobe brave and just honestly to just find
the joy in life. I mean, he'll get up, he'll get up
in front of everyone at church andhe's been like dancing on the stage,
just just having a good time,you know, no worries at all,
(01:00:39):
yeah, and I think that's whatI love most about him, just the
pure innocence, the purity and stuff. Yeah, that is really cool.
And I can hear, I canI can see and hear that in the
conversation earlier. It's that's just likehe's he's his own person. He's gonna
do like what what he wants todo in the in the purest best way,
(01:01:00):
not like in the the negative orlike rebellious. It's just like he's
got his own thing and he's doingit, and it's it's very clear to
see all those characteristics that you guyshave talked about are just so evident in
his and his joyous nature. AndI am so grateful for the chance to
(01:01:21):
get to talk with you guys,and that you're sharing him with us and
with the world. And I knowthat his story, as well as your
family story, as an extension,is going to make an impact on a
lot of people, even not evenmore so than it has already, and
we're blessed to be able to playa part of that. So thank you
for your willingness to open up tous today and talk to the our community.
(01:01:45):
And if there's is there anything elsethat you guys had hoped we would
touch on that we haven't talked about. We probably should put a name to
his genetic disorder. Yes, Iactually had a note to come back and
what we'll do a that is that'smostly important for our video and I'm gonna
(01:02:06):
I'm gonna ask you like a stagequestion for you to kind of give me
a short answer on but yeah,and and then well we can include that
as well as in the podcast intro, so that will be covered there.
But yeah, so I'll come backto that in just a second. Outside
of that, is there anything else, No, we're just super grateful for
the chance to you know, spreadawareness and he just share that. That's
(01:02:34):
what kind of an invisible disability ifyou will, you know, if Elias
is it hooked up dollar stuff,people would never know. I mean that
he was sick. So we're justgrateful for this chance to spread the hope.
Spread the hope. That's the becausethere is there's there's a lot of
(01:02:55):
hopes. Yeah, awesome, Well, thank you guys. I appreciate it,
and we're excited to shout love allmonth long in March for Eli and
for your family, and I hopethat's a great month. For you,
guys, and that you feel thelove and support not only of people in
the go shout Love community, buteven more so the people that are already
(01:03:16):
surrounding you, those people in yourchurch and your family and community workplaces,
and those folks that maybe we hopeour hope for you is that they will
get to know you at a brandnew level during this month, and this
is an opportunity for them to rallyaround you guys as well. So thank
you so much for sharing that yourstory with us. At go shout Love,
(01:03:37):
we do amazing things for amazing familieswith kids on rare medical journeys.
Each month, we shout Love forfamilies through the sale of creative apparel inspired
by the kids. This month's goodTimes Only design is inspired by Eli,
a goofy and affectionate boy from Bloomfield, Indiana who always wears a smile.
(01:04:00):
Every purchase in March we'll go tohelp with therapies for Eli that are not
covered by insurance. Visit our websiteat go shout dot Love to support Eli
through the purchase of a T shirt, hat, hoodie, or other items
Adam and Tia, thank you somuch for being on the Go Shot Love
Podcast. We're super excited to getto meet you guys and have you introduce
yourselves to our audience, and solet's start with that. Tell us,
Tia, tell us a little bitabout your family. Introduce us to your
husband and kids. So this isAdam and this is Elias. He likes
(00:25):
to go Bye. Eli. Wehave an eleven year old named Wyatt,
and we have a two year oldnamed Enzo and a six month old named
Finley. And then we have threebonus babies with us right now. Awesome.
(00:46):
And what's the range? Yeah,what's the what's the age range of
those bonus non babies? So oneis eight, one is turning six in
a week, and the other onejust turned three. Awesome. Okay,
so you have a busy house,thank god, yes at all times.
(01:15):
Welcome back everyone to the Go ShoutLove Podcast, where today we are talking
about our feature kid for the monthof March twenty twenty four, Elias,
or more affectionately called Eli, andso lucky you. In this episode you
will get to hear a good amountfrom Eli himself, and I will be
the first to tell you his personalitywill shine through as he joins the conversation
(01:38):
for the first part. So getready to smile and get ready to fall
in love with this little boy's personality. It will captivate you. Today we
are talking with Adam and Tilla,who are the parents to Eli, and
they are going to walk us througheverything Eli, from his personality, you
know what he likes and doesn't like, and of course his medical journey from
day one until now. Eli isdiagnosed with and I hope I say this
(02:01):
right nine p. Twenty four pointthree duplication which also comes with aspiration dysphagia,
autism, and with the name beingthat tough, I'm not going to
even attempt to tell you what itmeans. I'm going to leave that to
Adam and Tilla, who are goingto get us great insight into all of
that. As you heard, Eliis surmounded by a large, loving family
(02:23):
with some siblings and then some more. They will talk about that as well.
Leading this conversation is Josh Beach,our executive director of Go Shout Love.
As always, you can go toour website Go Shout dot Love and
browse our store. Every purchase inthe month of March will go towards supporting
Eli and his therapies which are notcovered by insurance. And what do you
(02:49):
like to do as a family forfun? What's the fun stuff that the
family is doing. Get ice cream? Ice cream is a good choice.
Can go to a movie see uh? And go to a game place.
He's talking about an arcade. Welike to and it had my friend Toby.
(03:17):
Toby gets to go to We reallylike I mean, we like to
play outside. We have a lotof fun outdoors. We also really enjoyed
the library. We're always at thelibrary. We really enjoy to play with
(03:43):
our chickens and and Pet our chickens, okay high pet one. And we
like to go to church. Oneof our favorite things to do times a
week is to go to church.Yeah, awesome, Eli. Do you
like going to church as well?Yeah? I have to ask, since
(04:06):
you brought up chickens, Eli,if there is a if you have named
them? Do you have names foryour chickens? One? Why is that?
Well, it actually has. Itgoes by a couple of names.
Started with the mister Cockadoo and nowI think we've switched over to big Red,
(04:28):
our biggest chicken. We have ourbiggest first one, big one,
more bigger, but not our labone. We're about to about to get
a whole bunch more, aren't we. Oh boy, buy some little chicks?
(04:54):
Yeah, me too? Hands Yeah, Eli is big? Read your
favorite? You do. I wasgonna say roosters don't. They don't.
My limited experience with the roosters saysthey don't love to be pet but I
(05:15):
could be wrong about that. Theydon't. Oh man, Well, okay,
Adam, let me ask you aquestion about Eli. How would you
describe Eli's personality? Oh? Man, he is he has quite the personality.
(05:35):
He's quite the character. Uh.He's always just like extremely positive and
everything that we get to do,he's very uplifting. And I don't know,
like I mean you think you thinkof a Honestly, he's just like
a light, you know, alight in our lives. He's always a
(05:59):
you think it would be hard withthe things that he's had to endure stuff,
but he's he's always just very personable, always trying to make you laugh,
and it's just something special. It'sa true blessing just to see him
like this. So even when timesget kind of hard with me and Tia,
you know, like he just alwaystries to make a smile. Yeah,
(06:20):
his sickness gets a little dreary,but he's just such a happy guy.
Yeah, I always up. That'sa good That is such a good
characteristic Eli. That is something thatwill always make everybody's day is when they
see a smile. So that's cool, Diah, what would you add,
(06:44):
He's definitely a little comedian. Yeah, I can tell. Eli's just he's
very compassionate. He cares a lot, and you know, one of the
things we always say to people islike, the one of the only things
he can eat his whip cream becauseit's safe for him. But yeah,
but he will always share it.I mean, you know, it's he
(07:10):
knows that whip cream is like histhing, and he never backs away from
sharing it with somebody who asks forit. He's just he's super punny,
is what we call him. Wewe teach him puns and then, you
know, because he has a differentway of learning and a different way of
(07:34):
understandingding things. He's very literal,so puns to him were very confusing for
a long time, but to himand he just thinks they're really fun.
He's just bouncy and bubbly. There'sjust a lot to him. That's so.
(07:56):
Is it safe to say he's he'swell on his way to have a
good uh, a good library ofdad jokes? You bet, he's very
much. He's very much that kid. He also likes to say things like
see you later, alligator, andthen he'll like, rhyme, what's another
(08:24):
one? Hi, it's one ofyour favorite goodbye sings. Piece. That's
one of the things he loves isto sing piece of things that he says.
That's so great at home, Scout, that's a great one. Oh
my goodness, that's great. Hi, dial wild dial afodile. Have you
(08:56):
ever seen Lyle Lyle crocodile? Yes, yeah, because shot with a dark
Oh yeah yeah. My son's nameis Lyle, and I haven't seen it.
But he gets called that. Hehears that a lot. He hears
(09:18):
Yeah, yeah, I think so. All right, So now I'm gonna
make it a little tougher on youguys, and we're gonna I'm gonna ask
you. I'm gonna ask you tosummarize Eli's personality into three words each.
So Mom, you're up first.You have to You can just use three
(09:39):
words to describe Eli what are yousaying? Oh man, goofy, sweet,
compassionate? What all right? Dad? You're up? It's gonna be
hard to be That pretty much summarizeshim. But I'll do. I'm gonna
(10:05):
go a little crazy. He's gota crazy personality. We'll do do caring,
cares about others and how they feel, and then we'll do mm hmm,
I'm gonna go with snugly. Snuglyman, Eli, those are some
(10:28):
big words to describe you. Thatsounds like you're a pretty cool dude.
All right, Eli, I haveanother question for you. We talked about
a little bit. What of yourfamily likes to do and going to the
movies and get ice cream and thosesort of things in church? Eli,
what do you like to do ifit's just you and you're by yourself?
What are you doing for fun?Play outside and play pudge and play on
(11:00):
the train only? I mean,okay, you can do black flips?
Can you do backflips? I can'tonly do a lolling soon. I don't
like this walling thing I do allover the place, just all over the
(11:28):
place. Huh. I was tryingit at turch I like I was trying
to do a handstand and did youdo it? It didn't laugh for long.
It's didn't last for long. Ifell on my belly. Oh yes,
(11:54):
okay, where's the second? What'sthe second thing that you said you
like to play? Was that PaulPatrol? Is that what you said?
Yeah, my pops, we hadthe inflation? Okay, who's your favorite?
Who's your favorite? On there?Hays and Marshall and Zooma and Lucky
(12:20):
and Sky and Lighter. They're allpretty great. They're all pretty great,
aren't they. One of the reallycool things about you is what's one of
your favorite hobbies? You did ittoday with Ariel? What did you do?
I make a good ol stix andlatinum and orange paper. He's art.
(12:43):
He loves art. Oh yeah,awesome. That sounds like fun.
So you like you like doing craftsand stuff like that. Yeah, yeah,
that sounds like a lot of fun. All right, let's it's sounds
like Eli. You have a lotof brothers and sisters in your house.
(13:05):
Yeah, what's it like to haveso many people in your house that love
you and that you love? WhenI walk by myself, I do applay
with some he will say, NowI want someone else to two people how
(13:33):
does it feel to have so manysiblings? But that's what he's asking.
Wow, loud, I hate hyyou get a headache, Ellie Day.
(13:56):
You know what, Eli? Ilove your honesty. He is honest to
a fullt like it's anything. Hejust can't tell you anything else. Yeah,
but I mean, you know,I if I were to ask,
I'm sure, Uh, Tia,Adam or you guys say, at the
at the right time, you probablyhave had a couple of headaches from a
(14:16):
loud house. That's probably a fairstatement, right. Oh my gosh,
Tia, tell me what how wouldyou describe the relationship that Eli has with
his siblings. Oh, you know, he's He's the one everybody asked to
play. He's the easiest one toget along with, unless you're the three
(14:41):
year old who doesn't want to sharewith anybody. But otherwise he's he's very
I don't know, he's just easyfor them to all play with. He
doesn't ever really start any bicker fightsor anything. He's just you think,
(15:03):
so well, so maybe maybe there'sthat honesty. There's that honesty coming back
right there. Oh my god,that was fun. Guy. I think
he was playing with you. Idon't think that qualifies as fine. I
(15:24):
said that was okay, I haveOh yeah, yeah, yeah. He's
just kind of just you know,fun to play with and very He always
has new ideas. I had anew idea for our party. We can
(15:46):
get ike. He's I don't know, and and they all just have such
a special love for him just becauseof all that he's been through, and
they're like to help take care ofhim, especially when he's sick. And
he's sick a lot. So yeah, Deacon, don't think it, Faya.
(16:10):
I get well, when he's sick, he plays a lot of video
games because he can't really do toomuch. So Deacon say, when I
playing a game, he will saythat not nice on it? Not Faya.
(16:32):
Yeah, Well, hey, itsounds like you've got a silver lining
there that you found. If you'regoing to be sick, you might as
well get to play some video games. Right. That doesn't mean that's not
fun being sick, but that's asilver lining. Do you know what that
means? I like, you wantto play video game right now, but
(16:53):
I can't. Well, do youwant to go play outside with them?
Because that's what they're doing. Whydo you go do that? No?
I think Charlotte's outside you go out. That was That's perfect timing. That
was so great. Yeah. Ilove his personality. Yeah, he's he
(17:21):
makes us all happy. We're reallyblessed by that. He has such a
good mentality about everything he visits,like mentally cannot I mean he can feel.
He can feel sadness. Okay,you can do your whip cream.
He can feel sadness, I meanhe does, but he just can't feel
(17:45):
anger like I mean, he doesn't. He's just and he definitely goes through
his frustration, you know, likenot being able to do some of the
things that the other kids get todo, but it doesn't angry. It
comes out sad, you know,and then you can really talk to him.
(18:10):
He doesn't understand that he can't eat. He always tries, he always
wants to. I think that's thehardest part with his autism diagnosis is that
mentality wise, he doesn't grasp thatit's not safe to eat, because you
know, when he gets a holdof something or whatever, he'll often choke
(18:33):
or become really sick from aspiration andhe won't understand why. So that's that's
probably the hardest. But when youtell him no or you we try really
hard not to tell him no,we try to find an alternative. He
(18:53):
takes it pretty well, you know, he he tries to be understanding to
you and like what you want,not necessarily what's happening to him. So
and guy was a three year old. Yeah, so we're gonna come.
(19:18):
I want to come back to someof the medical stuff here in just a
second. But since you've already liketouched on the foods side of things and
his eating and then he even alreadysaid that he loves whipped cream and suckers,
that's such a hard thing. Imean for any kid. Gosh,
even if it were an adult,right, Like, it'd be hard to
(19:38):
have to be so limited in yourfood. How have you guys, navigated
that and and how do you tryto help him enjoy as many flavors as
possible without and like I Tia,you'd said on the call the other day
that trying to avoid it making himfeel like it's a punishment when it's really
(20:00):
auxer you all about his protection.How do you navigate that with a lot
of prayer, to be honest withyou, and then you know, we've
prayed for new ideas and when onefails, because you know kids in general,
you can do something for so long, but they're going to get bored.
So in the beginning, it wasjust kind of plain. Whip cream
(20:23):
was was great. He was allabout it. We'd go to restaurants,
and we tried not to go totoo many, but sometimes you just when
we would be at appointments or something, we would have to stop, and
some of the restaurants just began toknow him and they would bring out a
bowl of whipped cream and that wassuper special to him. Sure, and
(20:45):
then that got boring, and sothen we'd navigate to like putting chocolate on
the whipped cream, you know,just a little drizzle or a few sprinkles.
We have to be careful with addingdifferent textures to the whip cream.
He can't swallow it very well.And then we started finding flavored whip cream,
(21:10):
like you know, all these ortarget or places like we'll have specialty
during certain types of seasons. Andthen recently we found that if we add
a little bit of pudding flavor tothe whip cream, he can have different
flavors, and so that's been prettyexciting for him. But we really just
(21:33):
try to find different alternatives suckers.We've you know, hunted high and low
for just all kinds of different suckersand flavors, and I really just don't
like the amount of sugar, soI find a lot of ones online that
are healthier options. And then wealso had the idea to find him different
(21:56):
flavors of toothpaste, like there's justwhen he's brushing his teeth, you know.
We found like vanilla cupcake, andthey're like a healthier version to it.
But it's just we just do alot of research. And funny enough,
one of the things he did foryears was he would he would lick
(22:18):
ice packs, you know, toget the sensation of being cold on his
mouth during the summer. And thatwas one thing he did for a long
time. And right now we're ableto do a little bit of thicken liquids.
Whether he drinks it or not isthe is the struggle part. So
(22:41):
we'll have to put it through speedingto and he doesn't. But he's been
able to drink a little bit more, and so we've been finding like kind
of healthier flavors for that, onesthat are I just I don't want him
to I don't know. We justdo a lot of digging, do a
(23:03):
lot of research, and when heasks rates and he gets sick, we
have to backtrack and only do youknow, a little bit, and he'll
get to the point where he can'ttolerate the even the whip cream, so
we move back to just suckers.But if we can't do anything, we
just honestly, we have a switchthat was given to him because he was
(23:26):
in the hospital all the time,and so we pull that out and we'll
let him have specialty times. It'sjust we do a lot of like navigating.
Plus we've hired staff that work withus. He has autism therapy,
and he has nurses, and theyall tried to make his days just super
(23:48):
special by bringing just all kinds ofdifferent activities with them and redirecting him in
a loving way. That's awesome.Food is like such a major part of
our culture, you know, likeeverything you do involves food, whether it's
right going out with family or likecelebrating birthdays or even going camping. You
(24:14):
know, like food is a majorthing, right. But I think it's
really great because our entire community thatdoes know him, like especially our church,
they try to work with us onfinding ways to keep him involved,
so that way he'll get to participatewithout being felt like feel like he's left
out. You know. Yeah,man, what a great what a really
(24:37):
cool thing just to be loved bypeople in such a way that they recognize
that feeling. And that's got tobe that has to feel great as parents
to see other people recognize that andkind of come to your support and come
to your aid and say we're goingto do that with you as well,
Like we're going to help accommodate andmake sure that he's included in ways that
(25:00):
he didn't that you can't control,but they're helping helping him feel involved.
That's got to be something special aboutthat. It's definitely an answered prayer.
We prayed for a long time tohave a community who just loved on him
in such a strong way. Yeah, So this is one of the things
(25:21):
I wanted to touch on. You'vementioned that your church and your faith play
a big role in your in yourin your day to day lives. Just
talk a little bit more about howwhether it's church or your your local community,
tell us a little bit more abouthow that group of people, what
they mean to your family, andwhat it's been like to have them support
eli. You know, I'd probablyhave to go back a little bit,
(25:48):
if that's okay with you, tokind of sure how we got to where
we are. So let's go backand do let's talk about his medical journey,
and then we'll come back to aswe do that you can show to
talk about where they've showed up foryou. And that does that sound good?
Yeah, we can do that.That would be a little easier.
Yeah, awesome. So so tellme about when kind of about his medical
(26:11):
journey and when you first kind ofrecognized anything of concern. So when I
was pregnant with him, with Elias, I we don't we still don't know
to this day if this played anyrole in it. But I did have
a pulmonary embolism, a blood clotin my lun and I was on bed
(26:33):
rest and you know, for mostof my pregnancy. So when he was
born, we took precautions and Ihad already had one emergency sea section prior,
and since I had the blood clot, we went ahead and just had
a sea section plan. And whenhe was born, he we thought everything
(26:57):
was fine. He was seven poundsfive ounce, is healthy, just adorable
baby. You didn't cry right away, but they got him to cry pretty
quickly. But when he was broughtto my room, he just sounded off
and I mentioned it to him andthey kind of took a listen to him
(27:19):
and they you know how they arein the hospital, They don't make things
sound severe, right. They kindof just took him out, said they
were gonna just check him over.Ended up having to put him in the
nick you because he had fluid inhis lens. Well, the theory was
that it was a c section,and that's just what happens. And you
(27:41):
know, we had prior experience withchildren, or with a child. Our
oldest aspirated and got pneumonia quite abit, but he was pretty He was
pretty safe with it because we learnedthat well we needed to do was thick
in his liquids, and he wasokay. So I didn't really think too
(28:06):
much about it while I was inthe hospital. We stayed for almost a
week and then they sent him home. They had put him on anibiotics,
got him healthy and he was onhis way. Well, it was about
two about a week later, maybecloser, No, I think entirety he
(28:30):
was two weeks old, so Ithink it was about another week. One
night, I was up all nightand I just I was dealing with some
postpartum blues, so I was secondguessing some things. He was having purple
blue episodes. It was nighttime,the lighting in our home wasn't very bright,
(28:52):
so I don't I thought that Iwas seeing things, but maybe I
was just overreacting. But his chestwas concaving in an unnatural way, and
I just held him. I stayedawake all night and I held him.
And then that next morning, Iwas still awake. I was sitting in
(29:15):
the chair with him and a recliner, and I was kind of just sitting
there with my eyes closed. ButI was awake and having a conversation with
my four year old at the time, and opened my eyes and Eli wasn't
breathing, and of course I wasa little stunned for a second, I
(29:37):
didn't really know what I was seeing. And then I yelled for ad him.
I'm more screamed for him, andhe took him from me and took
him to the floor and immediately kindof just was drostling him and trying to,
you know, get him to breathe. And then I took over and
(29:57):
I kind of did some chest compressand I was able to get him to
kind of breathe. It wasn't verywell. He was rushed to the hospital
stayed a week to be discharged withthe UH to be discharged with the diagnosis
of reflex. They had experienced hisblue episodes as well. In the hospital.
(30:22):
They wouldn't do a swallow study,even though at that point my brain
took me to my other son andwas like, we need a swallow study.
They wouldn't do it. So theysent him home on an athneum monitor
and the first night it went off, he stopped breathing again, and it
was it was going off multiple times, you know, like, seriously,
is this thing just malfunctioning or what? No, Yeah, we didn't realize
(30:48):
it was actually him is two droppingconstantly Like we were made to believe that
that wasn't the case, you know, that it was just reflex. So
we took him or he was rushedto Riley Children's Hospital in Indianapolis, and
they immediately did an echo cardiogram anda swallow study, and he failed the
(31:11):
swallow study completely. He failt alltypes of liquids and he ended up on
a feeding tube nasal feeding to Heended up on that feeding to until he
was six months old, and theyhe kept failing the swallow studies, and
so they did and a G twoat that point, and by the time
(31:32):
that he was one, we weren'ttolerating any type of foods, even when
he started eating by mouth, sothen he was put on like real foods
through the stomach. But by thetime that he was two, we were
failure to thrive. He wasn't gettinganybody. He was vomiting NonStop. We
(31:57):
started to see bee stuff. Hewas self harming a lot. He would
hit his head on the walls andscream. He never slept, and so
then we started doing some genetic testingand we went and saw a couple of
new doctors outside of the gi wewere seeing. He saw developmental and we
(32:22):
saw an E. N T andpulmonologist. At the time, Eli's lungs
weren't doing so hot because he wasstill asperating because we were going through some
beeding therapy trying to see if wecould strengthen things, and he found that
he had a hole in his airway. They called it a lour angual cleft,
(32:43):
and so they told us that henot only needed a J two,
but he because his stomach just wasnot working well. But he needed a
repair on his airway, so wewe had throat surgery done and at the
(33:07):
same time they put a J tubein which goes through his intestines. And
so during that procedure, his airwayswelled and we found out he has reactive
airway disease. And he ended upon a ventilator. And you said he
(33:29):
was two at this time, Isthat right? Yes, he was too,
and so he uh, he nearlydied from that when they tried to
remove the event he coded, butyou know, by the grace of God,
he was revived and he ended upwith double pneumonia from the ventilator.
(33:55):
And he always ends up with pneumoniawhen they mess around in his lungs.
I don't want to say always,but more times than not, Uh,
he does. But we came backfrom that, and you know what,
the next year, year or two, he was the healthiest we'd ever seen
him. He was diagnosed with autismand adhd uh and that opened the doors
(34:21):
for a lot of good therapy.He was able to start some recreational therapy
to teach him how to play.Uh. Elias does not understand social cues
very well, and and they wereable to help him work through all of
that because it made all of hismedical stuff a lot harder when they would
(34:44):
try to treat him at the hospitalor anything. And that's where a lot
of his self, you know,harming behaviors were coming from. And he
didn't speak until he was u aboutfour and a half. One of the
cool stories I like to tell people. I don't know that it's a story,
(35:06):
but one of the cool things aboutEli is Eli did not speak at
all. He said kind of somemumbo jumbo words, you know that he
would just like mumble over. Hewould, you know, try to He
would mimic your speech a lot.But he never functionally talked to you.
(35:27):
But one of the things that healways did was we would sing this this
song. It's completely spacing you rightnow. His favorite song. Sure,
he has a lot of favorites now, but it's a oh my, raise
(35:47):
a Hallelujah. Sorry, it justcompletely left in my brain, which is
crazy, raise a Hallelujah. Uh. I don't remember who it's by,
but he just love that song andwe would play it all every time he
was in the hospital and every timehe was sick. And he could sing
(36:07):
that song, but he never spoketo us. And it was just such
an empowering song because if you knowthe song, it's about a little boy
who got sick and was and hewas healed eventually. And I didn't know
that when he was singing that songuntil someone told me. He was like
(36:28):
five years old at that point andsomeone's like, do you know what that
song's about? And it was justsuch a powerful, a powerful thing because
he'd just been singing that song foreverand it really was what kept the light
in his eyes, you know,when he was really sick. And so
(36:50):
we kind of went on for twoyears then, not super sick. He
was out and about. He waswalking, Well, he did you store
braces on his ankles? He hashave low tone? Couldn't. Yeah,
he didn't start walking into it twoand a half. Yeah, it took
him a while. And then wefound out that there was a potential diagnosis
(37:16):
of a genetic disorder, but theydidn't know if it had anything to do
with anything. It was kind ofa They did a ray of tests and
they kind of found it on theback burner, like it wasn't what they
were looking for, so they didn'tknow if it played any part. And
then fast forward to maybe both beingChristmases ago, we started doing feeding therapy.
(37:46):
We decided he was healthy enough thatwe want to do some intensive feeding
where he could be under the microscopeand we wouldn't be doing it at home.
They could really watch what you're doing. Little did we know that this
would be the beginning of a lotof sickness for him. It's almost like
(38:06):
it disrupted his body and he endedup very sick. He was hospitalized like
three or four times within the spanof a couple months. And was it
last year? It was last year, and he started having episodes at night
(38:28):
where he would vomit between like oneand three in the morning, and he
wouldn't be awake, and we Ishould mention in the span of his seven
years of life, we have foundhim unconscious and blew five times and I've
had to do chest compressions three orfour of those times, and so he
(38:59):
you know, we started doing alot of testing and starting to try to
figure out what was going on.We went to different children's hospitals and most
recently we went to the Mail Clinicand they have a lot of ideas.
They have a lot of thoughts.They didn't get to do as much as
they wanted to do while we werethere, so now we are in the
(39:21):
process of doing more. So Iguess fast forward to now is Eli is
still dealing with Pneumonia's gets pneumonia morethan he should. He was recently sick
again, but we're also dealing witha new symptom that came on with his
(39:45):
heart. His heart is way fasterthan it should be when he's just setting
and so actually right now he's wearinga heart monitor for two weeks to see
what's going on. He has struggleswith his oxygen keeping it up. The
(40:06):
theory is is that he's working toohard to keep his oxygen up. So
that's kind of where we're at now. But through all that, we've been
at our church for two years,and in the beginning before we went to
this church, we went to achurch prior to that, which was amazing
as well, But we were justpraying for a community that would love on
(40:31):
our family for as different and asyou know, crazy as it was.
We were just and at the timewe only had two boys, but we
knew that the Lord was calling usto bring more children into our family,
and people really thought that was crazyof us with a sick child, but
(40:52):
we just knew that, like,we could not sit in the hard and
just not move forward. We couldn't. We couldn't do that to Alias.
We couldn't make his sickness the centerof our world. We need. Yeah,
we did that for two whole years, just kind of sitting in despair
and hopelessness because if we weren't gettingany answers from him, you know,
(41:13):
and he wasn't getting any healthier,and yeah, we're just kind of we're
just kind of over it. Likewe finally figured out a way to just
pray about it and give it toGod and trust in Him to just kind
of take over Elie for us too. You know, we were assured,
you know, thank God. Andthat's really kind of where our faith started
(41:35):
taking off. We had went througha miscarriage because it was in twenty nineteen.
He had been sick. He wehad found out we were pregnant,
very nervous, you know, wedidn't know if this child would have you
know, sicknesses. But then youknow, I miscarried and it really just
(41:59):
sent us, it knows, divedus right into just Okay, we can't
do this anymore, like loss ofa child, sick child. It was
just it felt like we needed somethingmore. And that's where we really,
(42:20):
i mean really really dove into ourfaith. And so then we prayed for
a church that would just be rightthere with us. And you know,
God had been calling us to fosterfor years to really help a child,
maybe with special needs, because weknew so much, and we kept wondering,
like, what are we going todo with all of this knowledge after
(42:45):
Eli? Because we truly believed Eliis going to be healed and we still
do to this day. And whatthat looks like, we don't know.
But and so was it November?It was October of twenty twenty one,
twenty twenty one, Yeah, no, twenty twenty two. Well, a
(43:06):
couple months before that, we heardabout a little boy that had a brain
injury, and our agency that wewere we signed up with asked us if
we wanted him. He was upfor adoption. He was only a few
months old at that time. ByOctober when we did get him, he
(43:29):
was nine months old, and Ikid you not, it was like the
beginning of so much more in ourlife. With Endzo became two nurses,
and where we lived, we couldn'tfind any nurses for Eli. Ever,
we hunted high and low, andthere comes our ends and with two nurses
(43:52):
who have now become Eli's nurses,and they just fall all over him.
And they've went with us to Minnesota. They come with us to his doctor's
appointments. They advocate for him leftand right. They you know, they're
just one of them, stays overnightsa lot. It's just that was such
(44:13):
a blessing all on its own.And then our church just poured into our
foster child. At the time,he wasn't adopted yet. We fostered two
other kiddos, a teenager and afour year old for a short period and
then and those sibilings were removed andthey asked us if we wanted them,
(44:36):
But I should say I was pregnantat that time. I got pregnant after
years of infertility struggles, and soit was just crazy. And one whole
year we got five children, andour church just stayed with us the entire
time. They you know, theypoured into us and all sorts of ways.
(45:01):
They one of the ladies from ourchurch who does our Sunday school with
our kids went to Grandparents' Day forone of our foster children. Like they
showed up with meals. They didmeal train after meal train. Financially,
they poured into our foster children,brought us clothes, got brought. I
(45:23):
mean it was just from going justme, Adam and our two boys doing
it on our own. I wasalways at the hospital by myself because Adam
couldn't take off work, couldn't leaveWyat. He is now able to go
(45:45):
with us, and we have morechildren than we used to and he can
now come with us. And it'sjust there's so many blessings. I mean,
the Lord says there's going to beblessed and all the suffering. He
promises that all throughout the Bible,and we are truly seeing the through of
(46:06):
that. There is blessings in thesuffering. I can tell you that we
are a lot happier now, eventhough Eli is having more symptoms and still
sick, we are all entirely,our whole family is happier now than before.
So that's kind of where our faithis. So it sounds like you
(46:32):
have really found the answers that youneeded in terms of relationship and support in
this church and especially over the lastcouple of years then, yeah, yeah,
extremely, like it's been such anextreme part of our extreme Serrong one,
(46:55):
such an important part, yeah,of our daily life. And it's
there are family. I never reallyknew what that really was when people would
say, what you know, churchfor a long time for us was what
(47:15):
you did on Sunday. Now it'sjust our life and the church isn't the
building, it's the people in it. Yeah, and we've really discovered that
and it's a I'm assuming it's adifferent level of community than you've ever experienced.
Then if that's the way that they'reshowing up for you, yeah,
most definitely. Yeah, that's awesome. I want to come back to a
(47:38):
piece Tia that you had mentioned interms of Eli having to be resuscitated.
I think you said five times,is that right? So yeah, I
had to do chest compressions maybe threeor four of those times. But he's
had blue episodes five times in hislife. One of those times I was
(48:02):
able to get him, like Ijust sat. It was in the middle
of the night and he was sleepingon my floor and so I could keep
an eye on him. And thatwas before we got him a medical bed
and I just sat him up andhe was able to start breathing on his
own, but the other times I'vehad to physically chest compress him to where
(48:23):
he would breathe again. So thatis something that is nothing short of traumatic
for you, I'm sure, andeven Adam, for you or anybody who
witnesses that. And so it's thatis doing or even seeing that done is
terrifying and comes with it its ownweight. But when it's your own child,
(48:46):
especially, I can only imagine thatthe layer the level at which I'm
so sorry, my recording just stoppedrandomly, This is not going well,
I'm so sorry. You what theenemy doesn't want these stories told, So
(49:07):
that's what's going to happen. Okay, So I'm going to reset that just
to make sure that it didn't wedon't lose it. So we're good now.
So seeing or performing CPR is aterrifying thing for anybody, and I
can only imagine that it's when it'syour own child, how much even more
(49:28):
significantly traumatic that is. And soI'm just curious, how have you,
how have you managed that that weightof such significant moments for someone you love
so dearly. Oh, that's athat's a tricky one. I didn't deal
(49:52):
with it well at first. Ihonestly, I didn't deal with it the
first time that I ever had todo it when he was two weeks old,
which I had no idea what Iwas doing. Since then, now
I am CPR and first rate certified, but I I just kind of went
(50:13):
with instincts when he was two weeksold. But I am never really dealt
with it, to be honest withyou. We were in such that we
were in the thick of just figuringout that he had health concerns. We
were in the thick of the sicknessand not really focusing on ourselves at that
point. Would you describe that asthis pure survival mode? Oh? Yeah,
(50:37):
survival mode. I mean, you'reyou're going through these traumatic experiences every
single time, like he's getting sickin the hospital and vomiting, and it's
just so much emotional toll on you. You kind of just turn it all.
Yeah, you kind of just becomeautomated to it, you know.
I didn't realize that I had turnedoff any type of freak out, any
(51:02):
type of when it would happen,I would go into pure Okay, this
is what we're going to do.This is how we're going to do it.
This is what's happening until our nursestays overnight just looked at me,
like, how, how, howare you doing this right now? You
know, our one of our therapiststhat works with our son went with me
(51:27):
to a procedure where they have toswitch out the J two. They like
to keep people awake while they doit. They say it's not supposed to
hurt, but for our son,it's extremely painful. He screams louder than
I've ever heard him scream during thoseand I had since then told them that
he has to be sedated for it, but I I had been We we
(51:49):
go through those procedures every four months, and she went through it with me,
and I didn't even think to warnher, and she was a little
traumatized from it, and she justcould not believe that I'd been doing it
by myself, because they can onlyhave one you know, they usually can
only have one person, and actuallythey can look to but Adam had to
stay out with our son, andso she went in with me to help.
(52:15):
And I just I think that priorto really diving deep into my faith
in finding our family, at church, I just survival mode, and then
since then it's been coming in wavesof grief and trying to understand the bigger
(52:38):
picture of why our child could besick. Definitely, don't take anything for
granted, you know, like nothing, your health, anything that you have
in life is a blessing. AndI think the biggest thing that He's taught
me is even though your life canget super stressful, you feel anxious everything,
(53:00):
you know, God Gud's there,He's with you, he's living living
it with you, and all youhave to do is just surrender to Him
to be strengthened, you know,just appreciate what He has given you in
life. Yeah, and literally takeit day by day like the future.
(53:23):
You don't know what the future holds, and all you can do is live
in the now. And I mean, honestly, that's I think that's the
biggest thing I've taken from it.Yeah, Tia, what about you?
What has Eli taught you about life? You know, I don't like the
lesson I've learned from it, ifI'm going to be honest with you,
(53:45):
Because the lesson I have learn isthat God is still good even if Elias
doesn't make it through this, youknow, God forbid that. But I've
had fear constantly, you know,the what if my baby dies? You
(54:08):
know, I mean that's your worstfear as a parent. We're always doing
everything we can to protect our children, right like people who don't have children
with health concerns. It's where thatsunscreen, you know, to protect from
the sun, all all the simplethings that you do, whereas sunscreen just
(54:34):
I laugh at it, but Ialways try to remember to apply it,
but I just laugh because for Alias, it's like we have absolutely no control,
right, like, yeah, justapply some sunscreen or a band aid
and it's going to be okay.We have no idea what's going to happen,
and that takes away all the controlas a parent. And Eli has
(55:00):
really shown me what light looks like, what that there is so much good
in something that looks so that looksso dreary, that doesn't look good at
all. Like you know, Icould look at Eli every day and just
(55:21):
grieve him, which I was doing, yeah, you know, and I
didn't want to do that anymore.I mean, and I want to know
that there's going to be good evenwhile he's sick, and there there is,
He's taught me that there's just somuch good, you know. I
when he is sick, he isstill his goofy self that you were talking
(55:42):
to earlier. He does he doesnot change. He's he looks sick,
but he's just taught me that likeit, it's just our our broken human
ways, you know, and evenchildren can get sick. It happens to
(56:06):
children. You know. We don'twant it to, but it does.
So yeah, yeah, it seemslike there are I love your honesty in
terms of saying that you don't likethe lesson that you've learned, because it's
certainly yeah, it's it's this realizationthat that it's really hard and it's unfair,
(56:27):
and it's not the season, andthis this situation is not at all
what you would sign up for.But then you see the perspective shifts that
can come from that, and eveneven the goodness in it is a I'm
sure a breath of fresh air whenyou can see that Eli can point you
(56:52):
in that direction. What a coolcoincidental of a blessing is that while he's
the one going through it, he'salso the one teacher that's a that's a
cool thing. I want to wrapup with one more question for you,
guys. This is a another onethat I want to for you to both
(57:13):
answer and Tia, I'll start withyou on this one. But what do
you love most about Eli? Andwhat do you love about getting to be
his mom? Oh? What Ilove most about Eli is everything I I
(57:36):
think. Really, I love howhis brain works. He well, I've
told you before, he's very literal, but he also has such an artistic
mind. How he figures things out, how he writes, how he draws,
is very It just gives you aa picture of what he sees in
(58:00):
his brain. It's such a beautiful, beautiful picture of how he is and
who he is. And I justI love seeing his I just love seeing
the beauty and him come out andhow he talks to you. And I
(58:25):
just love how his brain works.I love being his mom because he He's
just a miracle. And I'm gratefulthat the Lord's given me a child who
(58:45):
is a miracle. He's a testimonyof God's faith and love and what a
gift, you know, And allchildren are gifts. Don't get me wrong,
I obviously love children, but havingbeing able to have a testimony of
(59:07):
the miracle is just it's amazing.It's uh, it's a what is it
bettersweet little you know, you don'treally want to go through that, but
it's just still that's yeah, that'sawesome. Thank you for that. All
right, Adam, your turn forthe tough one. What do you love
(59:30):
most about Eli and what makes youmost proud to be his dad? Man,
I'll definitely agree with Tia. Likehis uh, I'm gonna name him
quirks. Yeahs are definitely amazing,you know, just getting in too know
him and his uniqueness. But I'mgonna have to go with just his his
(59:52):
what do you call it, hiscourage? Honestly, like, no matter
where he is, what he's doing, if he's healthy or sick, if
he's just he's always so brave andcourageous. And he expresses that in what
he does, whether it's singing ordancing or drawing or anything. He just
(01:00:15):
he shows everyone what it means tobe brave and just honestly to just find
the joy in life. I mean, he'll get up, he'll get up
in front of everyone at church andhe's been like dancing on the stage,
just just having a good time,you know, no worries at all,
(01:00:39):
yeah, and I think that's whatI love most about him, just the
pure innocence, the purity and stuff. Yeah, that is really cool.
And I can hear, I canI can see and hear that in the
conversation earlier. It's that's just likehe's he's his own person. He's gonna
do like what what he wants todo in the in the purest best way,
(01:01:00):
not like in the the negative orlike rebellious. It's just like he's
got his own thing and he's doingit, and it's it's very clear to
see all those characteristics that you guyshave talked about are just so evident in
his and his joyous nature. AndI am so grateful for the chance to
(01:01:21):
get to talk with you guys,and that you're sharing him with us and
with the world. And I knowthat his story, as well as your
family story, as an extension,is going to make an impact on a
lot of people, even not evenmore so than it has already, and
we're blessed to be able to playa part of that. So thank you
for your willingness to open up tous today and talk to the our community.
(01:01:45):
And if there's is there anything elsethat you guys had hoped we would
touch on that we haven't talked about. We probably should put a name to
his genetic disorder. Yes, Iactually had a note to come back and
what we'll do a that is that'smostly important for our video and I'm gonna
(01:02:06):
I'm gonna ask you like a stagequestion for you to kind of give me
a short answer on but yeah,and and then well we can include that
as well as in the podcast intro, so that will be covered there.
But yeah, so I'll come backto that in just a second. Outside
of that, is there anything else, No, we're just super grateful for
the chance to you know, spreadawareness and he just share that. That's
(01:02:34):
what kind of an invisible disability ifyou will, you know, if Elias
is it hooked up dollar stuff,people would never know. I mean that
he was sick. So we're justgrateful for this chance to spread the hope.
Spread the hope. That's the becausethere is there's there's a lot of
(01:02:55):
hopes. Yeah, awesome, Well, thank you guys. I appreciate it,
and we're excited to shout love allmonth long in March for Eli and
for your family, and I hopethat's a great month. For you,
guys, and that you feel thelove and support not only of people in
the go shout Love community, buteven more so the people that are already
(01:03:16):
surrounding you, those people in yourchurch and your family and community workplaces,
and those folks that maybe we hopeour hope for you is that they will
get to know you at a brandnew level during this month, and this
is an opportunity for them to rallyaround you guys as well. So thank
you so much for sharing that yourstory with us. At go shout Love,
(01:03:37):
we do amazing things for amazing familieswith kids on rare medical journeys.
Each month, we shout Love forfamilies through the sale of creative apparel inspired
by the kids. This month's goodTimes Only design is inspired by Eli,
a goofy and affectionate boy from Bloomfield, Indiana who always wears a smile.
(01:04:00):
Every purchase in March we'll go tohelp with therapies for Eli that are not
covered by insurance. Visit our websiteat go shout dot Love to support Eli
through the purchase of a T shirt, hat, hoodie, or other items
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