April 2, 2024 • 34 mins
Text Brian & Shawna (Fan Mail)
Facing a parent's greatest fear, Yvonne and Josh share their deeply personal experience with their son Nick's struggle against Alexander's Disease. Their story transcends the unimaginable challenges they've faced, from early signs to heartbreaking progression of the condition, offering a beacon of hope through their unity and spirit. As they reveal the difficult journey, including Nick's stroke and the complications with insurance, you'll feel the strength that love and family can bring, even in the direst of circumstances.
This episode isn't just about the pain of grief—it's about finding pathways through it. We explore the solace offered by virtual communities like Horizons, where the avatars that roam digital landscapes carry the souls of real people grappling with real struggles. You'll hear how these connections offer a shoulder to lean on and how such support can manifest in unexpected ways.
As a tribute to Nick's memory, we reflect on the extraordinary power of faith and the embrace of a supportive online and offline community. The episode touches on the vital role of personal networks in providing a sanctuary from despair, highlighting how collective acts of kindness and remembrance can be a guiding light in dark times. Whether you're looking to find comfort, understand the grieving process, or need a reminder that you're not alone, this conversation is a heartfelt testament to the strength that comes from togetherness.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
But welcome to today's podcast replay from the
Killer Bee Studios.
Let's go ahead and dive on in.
Hey everybody, thanks forjoining us tonight here at the
Killer Bee Studios.
I'm so excited you guys are allhere.
Our guests will be Yvonne andJosh, and 10 years ago and
here's what I'm talking aboutthis is a real personal story 10
(00:21):
years ago, they faced one ofthe worst, probably nightmares a
parent could have, and that iswhen their child, nick, was
diagnosed with something calledAlexander's disease.
Now, I don't know whatAlexander's disease is they're
going to inform us about thatthroughout the show but despite
that, this situation, which wasunimaginable, this unimaginable
(00:43):
challenge that they were facingthis brought them closer
together.
It strengthened their bond witheach other and it deepened
their faith.
So I wanted to ask you guys toplease join me in giving them a
warm welcome.
Let's throw some confetti as webring in our guests Yvonne and
Josh to Killer Bee Studios.
Let's throw some confetti, guys.
Thank you guys so much forcoming out and joining us today.
(01:05):
Thank you guys for joining usand being out here today with us
.
Speaker 2 (01:07):
Thanks for having us here.
Speaker 1 (01:09):
So I know you guys.
I've met you guys in real life,right?
So we met in real life becausewe all work in broadcasting, so
we kind of know each other, butwe're going to know each other
more, I think, because ofhorizons, than even in real life
yep wow, how long.
Okay.
So, yvonne, what's your metaage right now?
Speaker 2 (01:28):
um two in september wow yeah, because josh got me my
headset for my birthday inseptember nice.
Speaker 1 (01:38):
Now, josh, how long have you been on?
Because I mean you're stillworking out right now.
I know like you're stilllearning controls and well,
you'll be, I suppose, two in, desuppose because you got your
three months after.
Speaker 3 (01:47):
Yeah, not much longer after you, because I like yours
so much as I got to get one formyself.
Speaker 1 (01:51):
So yeah, awesome, awesome, here's two well and
we're so happy that you guys arehere and part of the community.
I want to say again thank you,because you guys just courage to
come share nick's story with ustonight, and your journey is,
for me, it's inspiring, but it'salso humbling that you guys
would come to the studios hereto open your hearts, to share
this.
So so, to start out, I'd liketo ask you guys could you tell
(02:14):
us a little bit about Nick?
What was he like and what aresome of your cherished moments
together with Nick?
Speaker 2 (02:38):
Um well, he was the sweetest little boy and had the
biggest smile and he was a bigflirt kitchen floor and pulling
her fur and she head butted himand he made the funniest.
Look like what did you just doto me?
Like he was so offended by this.
Speaker 1 (02:54):
It was hilarious when you guys shared your story with
me a little bit about thealexander's disease.
I don't, I don't really knowwhat, what that is.
Uh, can you guys explain to uswhat, like what is the
alexander's disease and how itaffected nick?
Speaker 3 (03:10):
take him from day one , okay, when he was born, up
until yeah um alexander'sdisease.
Speaker 2 (03:16):
I'll explain what that is first.
Alexander disease is a terminalbrain disorder.
So if you think of um, so hisbrain did not produce myelin.
Myelin if you think of myelinis like if you think of a wire
and it has like a coating aroundit to protect the wires inside
(03:36):
of it.
Right, his brain did notproduce that to protect his
brain nerves from damage.
That's the best way to describeit.
When Nick was about six monthsold, he wasn't meeting
milestones like most babies do,like sitting up and crawling and
all of that and being able tohold his head up straight.
(03:58):
He wasn't doing that and hispediatrician was like you know.
This reminds me of a disorderthat I read about and we're like
what do you mean?
And he said yeah, thisAlexander disease that he read
about when he was in medicalschool and he said I would love
to send him for text testing forit because he has these
symptoms and before we couldeven start that process at 10
(04:21):
months old he had a stroke.
We could even start thatprocess at 10 months old he had
a stroke Wow.
Yeah, so we ended up in thehospital for gosh that was the
first time.
Yeah, yeah, like three months.
Speaker 3 (04:34):
That's when.
That's really when all theeverything kind of came to a
understanding that we knew thatthere was something wrong and we
didn't know what it was.
So it was time to startinvestigating.
Speaker 2 (04:47):
Yeah, we didn't end up getting the genetic testing
because that's the only way totest, for it is through genetic
testing.
We didn't end up getting thatdone because of insurance issues
until he was about two yearsold.
Speaker 1 (04:59):
Okay.
Speaker 2 (05:01):
And at that point we got the results and it was
exactly what his pediatricianthought it was and within maybe
two months of getting diagnosed,he lost the ability to swallow.
So he couldn't eat, or eat foodor anything, take anything
orally.
(05:21):
So he ended up with a feedingtube and it just progressed from
there wow, then that actuallywas what.
Speaker 3 (05:28):
One of the things I was going to ask you guys too is
like going through this youguys had never heard of this
alexander disease either no youknow what I would tell anybody
who's not sure about somethingdon't google it yeah, because
you're you're gonna get theworst possible and of course we
googled it and you know and andthen you just like oh no what
(05:52):
about this information now.
so that's kind of that's how itall started as far as trying to
gather information and trying tounderstand what alexander
disease was.
You know his brain wasbasically short-circuiting, it
was getting zapped because youknow his brain wasn't making the
(06:13):
mile in to keep things fromcolliding, and you know so he
was shorting out inside his headas you guys started learning
about this.
Speaker 1 (06:20):
what kind of challenges did you face as a
family?
Like because I couldn't imagineI mean going.
I'm imagining that you probablyhave a lot of in and out of
time at the hospital and stuff.
So like take us back to that.
Like how did it really, whatwere some of those challenges
that you guys were facing?
Speaker 2 (06:35):
Well, nick ended up in the hospital when he had the
feeding tube, and so we were inthere for a couple of months and
then home, and then he ended uphaving to have a trach surgery.
So he had a trach so he canbreathe, and then he was vent
dependent and I was the one thathad to be in the hospital with
him because I wasn't working,because he was sick his whole
(06:56):
life.
And so josh was an hour awayhere where we live now where we
live, and I was an hour, youknow, in fargo, while he was
home having to work.
Speaker 1 (07:08):
I had to be at the hospital with nick, so we didn't
see each other until saturdaysand then he had to go home on
sundays well, that had to betough, as as a couple because I
mean that's the one thing youwant is when you're going
through something as a couple,you want to, you want to I mean
you're obviously going throughit together but you're separated
.
So how, how difficult was thatCause?
(07:29):
I mean there had to be timesthat you felt like as a as a dad
, as a father, that had to hityou in some ways too.
That was probably different.
Speaker 3 (07:36):
When I realized that, um, as you know, guys want to
fix stuff.
That's just how we're wired.
You know we want to fix stuff.
That's just how we're wired.
You know we want to fix things.
And this was something that Icould not fix, so I did what I
could to make the situation.
You know, I, I went to work, Imade, I made money, I tried to
(07:58):
keep the you know, keep the boatfloating, I guess, so to speak.
You know.
And then um, I wasn't alwaysavailable to.
I mean, I was only an hour away, so if I needed to cannonball
down there I could, but for themost part we were living
separate for the time that Nickwas in the hospital and six
months that was, that was a longtime.
(08:19):
I mean, it was, you know, thethe first time he he was in, for
he was in the hospital forabout six months and then, um,
we did finally get him stable sowe could bring him home, you
know.
But you know, for for sixmonths of his life we were apart
, basically apart, for sixmonths trying to figure out a
(08:41):
plan of action for him wow, andhow old was he at this time?
Speaker 2 (08:46):
Three.
Speaker 1 (08:47):
Three or two?
No, he was two at that time.
Yeah, he was two.
Speaker 2 (08:51):
Yeah, and it was.
We were juggling differentthings.
He's at home juggling, workingfull time and paying bills and
everything, and I was at thehospital watching over Nick and
setting up differentappointments and surgeries
because he had multiplesurgeries too.
Speaker 3 (09:08):
She had to make all these decisions.
Speaker 2 (09:10):
Without him.
You know, she called me, I meanobviously we made the decisions
together over the phone, but hejust couldn't physically be
there.
Speaker 1 (09:18):
Right right, Is this a disease that's pretty common?
Speaker 2 (09:22):
No, it's very, very rare.
It is a male dominant genemutation which josh is a carrier
of um.
So if we ever had any morechildren, the likelihood of
having another child disorder isalmost 100 oh wow, really.
Speaker 1 (09:41):
They said it was like 99.6 something.
Wow, wow, I did not know that.
Speaker 2 (09:48):
But we know of over probably over 100 families that
have a child with this disorderstill living, or yeah.
Speaker 1 (09:57):
So was it like so the hospital you guys were going to
, did you guys get a lot ofsupport from the hospital too?
Did you guys get a lot ofsupport from the hospital too?
Absolutely yes.
Speaker 2 (10:06):
The staff was amazing .
A lot of the doctors and nursesthat we dealt with have become
like family to us.
Speaker 3 (10:12):
Oh, that's awesome yeah, and they didn't know
anything about this diseaseeither.
Really it took somebody veryspecialized to understand it,
because they've dealt it andresearched it and dug into it in
between.
You know, uh nick got to, hegot to fly everywhere.
He, you know, we got uhflighted, flighted down to
(10:48):
rochester to the mayo clinicdown there, mayo Clinic who has
patients with this disease.
Speaker 2 (10:56):
Yeah, she actually wrote a book about Alexander
disease and she studied it.
Speaker 1 (11:02):
I want to continue to dig into this story a little
bit.
Disease and she studied it.
I want to continue to dig intothis story a little bit.
You know, I think it'simportant to talk about these
things because life isn't alwaysgoing to go as we would hope
and during those times it'sleaning into communities and
friends and people being therein your corner that really helps
pull you through.
At least that's from myexperience, and it sounds like
(11:23):
you guys are already talkingabout that right now.
With the connections you madeat the hospitals, People you
didn't even know startedbecoming friends.
You said you're still friendswith a lot of them today.
Speaker 2 (11:31):
I'm still friends with a lot of them today.
That's amazing Between thehospital staff and our church
family.
We wouldn't have been able toget through that without all of
them.
Speaker 1 (11:42):
So I want to encourage you guys, as we
continue to listen to this story, think about that.
Like I don't know, the thingabout here is in Horizons is
like, okay, yeah, we're allavatars, but we're real people
in real life and we all dealwith stuff too.
So, even if you can't findfriends that connect with in
real life, connect with peoplein here.
There's amazing people in herethat want to be there to help
each other.
So, whatever you're goingthrough, find someone you can
(12:03):
trust to lean on, to share andshare those things with.
You know, as you guys are goingthrough this, I was talking to
Mrs Killer Beast.
I'm so sad that she's not herebecause I know she was really,
you know, excited to talk to youguys about this.
But one of the things that meand her were talking about as we
were processing your, when youguys submitted the application
to come share your story, and wewere going through that One of
(12:25):
the things that we were talkingabout is some of our own
tragedies that we've went in ourlife, that we've went through,
and I'm not going to go intothat.
We can talk about that later.
But one of the things I didwant to point out is that when
we were going through thesethings in our lives that we did
not expect to happen, when thattrauma hit in our lives, we
noticed that we both copetotally different with trauma
(12:46):
and I would love to ask you guysdid you guys notice that any
ways that you guys were copingdifferently?
Speaker 2 (12:51):
Oh yeah.
Speaker 3 (12:52):
Yeah, you're talking like after he passed, kind of
thing, or during.
Speaker 1 (12:58):
You could be both.
However, I know ours was aftera passing, but because we both
were excited beforehand and well, I guess I might as well just
say it because I won't go intoit, but we had a miscarriage and
so we were really excited, butthen when we lost the baby, it
was very, it was different forboth of us.
So I'm sure like, how was thatfor you guys?
Speaker 2 (13:19):
During everything, while it was all going on, I
didn't really focus because Iwas.
My brain was all focused onNick and what you know he needed
at that time Doctors, you know,surgeries, you name it.
I didn't have time to eventhink about my emotions at the
time of what was going on.
It wasn't until after he passedaway, it all flooded oh wow,
(13:45):
she didn't sleep, you know, shewas in the fight or flight mode.
Speaker 3 (13:49):
You know the whole time.
It took me literally literallyfor five years while he was here
.
Every day it was fight orflight mode for her, you know
having to make all thesedecisions.
Having to be strong, having tohave your guard up, having to.
You know what I mean make allthese decisions and you know.
Speaker 2 (14:07):
And yeah, wow, yeah I felt like my phone was attached
to my head because I couldn'tput it down, because I, if I put
it down, what if I miss a callfrom?
A doctor about a surgery orwhatever.
Speaker 1 (14:21):
Wow.
Speaker 2 (14:22):
So then, after he had passed, and it all was After-
he passed and it was weirdbecause there was this quietness
and it was an unsettlingquietness for me.
Speaker 3 (14:36):
I really the way I dealt with it.
I guess, during those times ofhigh stress, tough decisions,
what do you do?
What doctors does he have tosee next?
Is he going to have to go belife flighted somewhere?
I mean, when we went to thehospital, we lived in the
(14:56):
hospital for months at a time.
This was not just a couple dayshere.
You're fine, go home.
Speaker 2 (15:06):
This was between three and six-month spurts.
Speaker 3 (15:10):
Yeah, he would have to have a surgery.
He had shunts placed in hishead.
He had a trach.
Speaker 2 (15:18):
If you don't know what a shunt is, it's a device
that goes in the head,underneath the skin, to um drain
fluid from the brain, becausehe had um hydrocephaly, which is
fluid on the brain, and it putspressure on the brain which can
harm you, and then it drains itdown to your, your, your
(15:40):
cerebral spinal fluid.
Wow, I couldn't think.
Yeah.
The body drains it outnaturally.
Speaker 3 (15:46):
He went in for a couple of those surgeries and he
had this, and he had that andhe had.
You know, it was like this longlist.
He's probably had over 20surgeries and he was flown
everywhere because he couldn'ttravel.
You know, he couldn't.
He couldn't drive anywhere, sohe'd get a plane ride here
helicopter ride there whateverwhatever it was.
(16:10):
But how I coped during thosetimes like if we happen to be
close to home, when I could work, as crazy as it sounds, I would
deal with the hard stuff, plowthrough it and then I would run
to the golf course as fast as Icould to clear my head for a
couple hours before having todive back into reality, I guess
(16:32):
would be the way to describe itand I didn't want to do any of
those things.
Speaker 2 (16:36):
I just wanted to be right there with him in that
room and the nurses wouldliterally grab me and pull me
out of there and they're like goaway in a nice way go away for
a couple of hours, go dosomething.
I don't care what you do, butget out of here.
Speaker 1 (16:50):
Oh yeah, that's, that's tough.
Speaker 2 (16:52):
That was like one of the hardest things is leaving
that room, but knowing he was ingood hands.
Speaker 1 (16:58):
Yeah, wow.
I couldn't even imagine.
That.
I mean, it makes me think about, like you know, when we got in
here into Horizons, one of themain reasons we got involved was
I put on a headset and Icouldn't shake the feeling that
there were going to be people.
And there are people we'vealready met several of them that
have come into Horizons andthey put on the headset to try
(17:19):
to escape things that they'regoing through in life, but when
they take off the headset theystill have those problems.
So it's like how do we come inhere and be real with people and
be a light and help each otherand do life together as much as
we can from all places aroundthe world?
And these headsets, this isanother place to escape, but
it's also another place toconnect.
(17:39):
Uh, so, as you guys are goingthrough this, how did you, how
did you guys deal with the grief?
Like during that time if youguys don't mind sharing like
what were some of the things youfound?
Like you said, to kind of get abreak, you would go golfing.
Uh, after he, after he, afterhe passed, how did you guys cope
with the grief?
Did you guys do that?
Was it the same or was itdifferent?
Speaker 3 (18:03):
There was something.
Perfect timing happened.
When he did pass away, he wasstaying in a nursing facility
about two hours away from usbecause we couldn't provide the
care at our home, about twohours away from us.
So cause we couldn't providethe care at our home.
Speaker 2 (18:20):
So the backstory is Nick required 24 hour nursing
care because he was trach andventilator dependent since he
was from three to almost five.
We couldn't get nursing carefor him in our home any longer
because it had to be 24 hoursand it just wasn't available.
And so there was a live ininfacility here in North Dakota,
(18:42):
two, three hours away from us,for kids with special needs, and
so we ended up making thedecision to move him there, and
so we would go up every weekendand visit and then drive home
(19:04):
drive home.
Speaker 3 (19:05):
Yeah, well, and uh it uh just shy of his fifth
birthday.
Um, the doctors at the facilitynoticed that he was, he was
starting to decline, you know,and everything, and and uh.
So we were again.
We were on watch 24 7 on guard.
Uh, ready to go, ready to jump?
I mean we can still pack a baguh to to go in like three
minutes.
Yeah, really, yeah, oh my gosh,yeah, we were anywhere we were
(19:28):
the the the day that he passedaway.
Speaker 2 (19:31):
We were there visiting him.
We left that morning and he wasreally sleepy that day.
They said, and so we're like,okay, we, we're still going to
come, we're going to come andsee him.
And we knew he had an infection.
He had an infection in histrach, which was very common,
and we were like, okay, we'rejust going to go.
So we went there.
Everything was fine.
He slept the whole time we werethere.
(19:52):
But I know he knew we werethere because when I was talking
to him he would squeeze my hand, and so then we were there
until the afternoon.
We left at three, like wealways would do, and we got home
and my phone rang and it washis doctor and she said you need
to come back.
So we got on the road and wentback.
(20:16):
And we were there Ten minutesand in 10 minutes he passed away
Like that quick.
Speaker 3 (20:26):
It was time.
And there was no other way todescribe it other than the
doctors called, and that'spretty much how she said it.
She says you guys need to comeback.
She didn't go into any detail,but we knew from the sound of
her voice what was going tohappen.
Wow, yeah.
Speaker 1 (20:47):
We have believers that come here, we have people
that aren't believers, and forme, I just want to talk to you
guys about that, because I knowyou guys are believers, you guys
are in Christian broadcasting,and how did this experience
affect your faith and did itchange your relationship with
God?
Because I mean, there's beentimes in my life when I go
through things and I'm confusedand going God, what the heck is
(21:09):
going on?
Why is this happening?
Like, take me back to that.
How did this affect your faithin your relationship with God?
Speaker 2 (21:19):
It's weird saying this, but I never questioned
because I don't know why, but Ijust like I had this feeling
like, even though this ishappening, this was you know.
Speaker 3 (21:30):
I know it's cliche to say, but it wasn't god's plan,
and I just felt like that we hadI guess I just always had peace
with it well, Well we had a,you know, we've had an amazing
church family for many, manyyears, so we were surrounded by
prayer warriors all the time andyou know we called on them all
(21:55):
the time.
You know Nick's not doing well,all I'd have to do is throw up
a message on wherever Facebook,throw a text whatever, and I
knew that all the prayerwarriors would be there lifting
Nick up, lifting us up, you know.
And to have that, to know thatthere are people with you in it,
(22:16):
even though they're not in it,but they're there with you.
You know I're not in it, butthey're there with you, you know
I guess that would be the bestway to describe it to have that
support is so incredible and asfar as our faith goes, I mean I
I I guess I'm I never reallystruggled with it because, you
know, I, I knew I knew the Lordand I knew his plans were going
(22:40):
to be good.
He's going to take.
He's going to take whatever wasmeant to be bad and to destroy
you and flip it and turn it intosomething good, and we saw
evidence of that the whole timeNick was alive you know because
we would.
He had everybody.
(23:03):
All my friends knew him,everybody knew him.
You know, whether it wasknowing him in person, most of
them had never met him yeah butthey knew him through us, yeah
we were open books.
Speaker 2 (23:16):
We we always shared on facebook and caring bridge
about everything, what was goingon every single day.
Josh was really good aboutupdating everybody.
I was not.
I was a little busy.
Well, if I didn't update,people would message me and say
hey, what's going on, you knowso everybody was plugged in and
ready to go, Kind of like you'reyou know whatever situation you
(23:38):
know.
Speaker 3 (23:39):
You need to know, because you're on the edge of
your seat.
What's next?
What's next, how can we pray?
Speaker 2 (23:44):
And that's what happened, and one of the amazing
things, though through all ofthat trauma that was going on
with him, there were many peoplereaching out to Josh and I and
telling us how Nick's story thatyou know it was still going on
changed their lives.
People surrendered their lifeto Christ because of Nick's
(24:07):
story.
Speaker 1 (24:08):
Wow.
That's a beautiful thing isthat you can't see the impact
that's happening at that moment,because you guys are in the mix
of everything happening.
That's what you guys.
You guys are in this this, thismess right now and you guys are
trying to.
You guys are busy trying tokeep things going, but his hands
are at work, yeah, and otherpeople are seeing it go ahead
josh, it was like they.
Speaker 3 (24:28):
They wonder what's different.
What is different?
This sick, this circumstancethat these people are in right
now would is meant to destroypeople, is meant to, you know,
turn their worlds upside downand send them down a path that
they're not, that they don'twant to be on, and that never
happened to us because of afoundation and a family that we
(24:52):
had.
You know that we could call onat any given time and it was
absolutely amazing just havingthat support.
Speaker 1 (25:00):
Wow, the support that seems like like such a key
piece to this.
It's hard to believe.
I know me and Mrs Clearby talkabout it at times when we know
some of our loved ones that aregoing through things that don't
have that relationship, and it'slike I can't even wrap my mind
around what it would be likegoing through that, not having
that faith and having thatknowing that, even though we
(25:22):
can't make sense of things,god's at work here and it's
going to be used for the good,for the good of God, and it's a
it's a good place to be in sucha bad place that you're at, you
know, going through that season.
Speaker 3 (25:34):
The day that we, the day that we had to drive back
down and and the day that hepassed away, it was I, I don't
know how to describe it otherthan it was like the heaviness
was gone.
Yeah, we didn't have to worryabout him anymore.
You know, we knew that he washome in the arms of jesus.
(25:56):
You know that was we knew that.
but I mean, yeah, it hurt.
It hurt really hard, really bad, and that day we had a blizzard
that hit and we weren't able todrive the two hours back home.
So we were put up in a hotelwhich turned out to be in a
hotel for two days because weended up getting like two feet
(26:18):
of snow.
Speaker 2 (26:21):
we ended up getting like two feet of snow, and it
was actually a blessing indisguise, because we were
stranded there in this smallhotel and we turned our phones
off and we just stayed there,just us and just we.
Speaker 3 (26:33):
Didn't want to talk to anybody and we just needed to
soak everything in thathappened yeah, before, before
all the planning or anythingtook off, it was just like we
had two complete days of nothing, just each other yeah and and
time to breathe?
I guess would be, and it was I,it would it.
(26:57):
It's strange would be a goodway to describe it, because
we've been running and on highlevels of everything for five
years straight through and then,all of a sudden, all the worry
and all the crazy and everythingwas over.
Speaker 2 (27:13):
And it was just quiet .
Wow, wow, an eerie quiet.
Speaker 3 (27:17):
So we soaked in the peace of a few days before
everything planning of thefuneral and the family and
letting everybody know what'sgoing on.
So we had that downtime andthat was amazing.
So that was kind of like thebeginning of God knew what we
needed.
Speaker 1 (27:37):
He gave us a couple of days of peace, amen, what we
needed.
He gave us a couple of days, apiece that's amen, amen.
You know, as you guys continueto move forward, what are like,
what are some of the things youguys do now and today, and
moving forward to keep nick'smemory alive?
Speaker 2 (27:51):
um.
Every year we go to the anncarlson center, which is where
he lived, and we take schoolsupplies to the kids there.
Um geez, what else do we do?
Speaker 3 (28:03):
we have ice cream on his birthday yes, that was the
thing that we started when hewhen he was in uh, when he was
in the hospital, we starteddoing that with him, because
that was one of the only thingsthat he could eat was ice cream
so we'd, we'd take him out forice cream.
So we every.
Speaker 2 (28:20):
Vanilla ice cream cone.
Speaker 3 (28:22):
Yep, every birthday of his we go and you know we
shared that with everybody andsays, okay, have ice cream in
honor of Nick today.
Speaker 2 (28:32):
Oh, that's awesome.
So our friends would meet usand we'd go to Dairy Queen and
have ice cream.
Speaker 3 (28:36):
We have all the friends that have kids.
The same age as Nick would havebeen no, he'd have been, what?
16?
.
Speaker 2 (28:46):
He would have been 16 in April.
Speaker 3 (28:48):
Yeah, 16 in April and we have lots of friends with
16-year-old kids and it's likewe see them and the things that
they're into and the stuff.
So that's another thing.
It's like how can we cheer onyour kids, you know?
What would?
What are they into?
What would our?
It makes you think what wouldhe be into at 16?
(29:08):
You know.
Speaker 1 (29:09):
Yeah, yeah, wow, wow.
Speaker 2 (29:12):
He loved music so I know he would be into music.
Speaker 1 (29:16):
Yeah, he would have loved, wouldn't you he?
Speaker 2 (29:19):
had an obsession with drums.
Speaker 3 (29:22):
When the word of Nick started spreading all over the
place.
I mean everywhere.
I've got friends who aremusicians that play in Nashville
, you know and all of a suddenthese drumsticks started coming
in.
Speaker 2 (29:39):
Autographed drumsticks from all these bands.
Autographed drumsticks frombands and things Lita, ford and
all yeah.
Speaker 1 (29:45):
That's awesome, yeah, baseball players meeting him.
Speaker 2 (29:50):
There was a baseball player that came to see him in
the hospital.
Speaker 1 (29:53):
I want to encourage people.
It's beautiful to see peoplecome together when something
like this is happening right,because they know they need
support, and I want to encourageas we get ready we're going to
get ready to wrap up and I wantto thank you guys all for coming
on.
I know it's a little bit of atougher topic to listen to, but
I think it's so importantbecause we all go through
different things.
It might not be exactly this,but we all go through hardships
(30:16):
and the people that we meet,even in here in Horizons,
they're going through thingsthat we don't know and it's so
important for us to rememberthat and just like how people
came together to show you guyslove and that you're supported,
and they knew what was going on.
I want to encourage everybodyhere when you come in and you
meet people here in Horizons,treat them that way, without you
(30:36):
knowing what's going on, buttreat them that way now, even if
they're not treating you great.
Show them that you value themand you love them, that you care
for them.
You just don't know what peopleare going through and I want to
thank you guys both for comingout here.
Again, I'm truly grateful thatyou guys both came here and
chose that you guys wanted tocome to Killer Bee Studios to
(30:58):
share Nick's story here, becausethat is so, so honoring and
humbling for the studios here isto be able to let Nick's
stories be heard here.
So I want to thank you guys forthat, and I also I would love to
ask you guys, as we get readyto wrap up and afterwards, you
guys will take the table off thestage here and we can all come
(31:18):
up here and get a selfietogether.
We'd love to get a selfie ofeverybody and Dina will play the
outro music and you guys cancome on up.
But before we close, I wouldlike to ask you just just this.
I'd like to ask you what?
What motivated you, motivatedyou both to come and open your
hearts here to come share nextstory with us?
Speaker 2 (31:37):
Because there could be somebody here that has been
in a similar situation and ifthat has been any of you, feel
free to talk to us.
We would love to talk to youabout it.
Speaker 3 (31:49):
We're 11 years past.
The crazy I guess would be andthis might be a fresh thing for
a lot of people.
Maybe the hurt's really fresh,Maybe you lost somebody in the
last year or so, you know like,how do you get through it?
(32:10):
What do I do, you know?
I mean, there's no right way todo any of this.
Yeah, you know, that's what Iwould tell you first of all is
that there is no right way to doit.
Speaker 2 (32:23):
Yeah, there's no right way to grieve.
Speaker 3 (32:25):
Everybody grieves in their own way, but you have to.
You got to go through it.
You know, is it easy?
No, but you got to.
Speaker 1 (32:33):
That's good.
Well, you know, if anybody'sgoing through anything, let us
know, like talk to us, becausethere's people like Metacoach
and stuff like that, people thatwe can connect you with.
We have pastors here that wecan connect with from the
churches here in Horizons and ifyou're listening to the podcast
, you can click the link in thepodcast notes and contact us and
we'll help put you inconnection with somebody that
(32:54):
can be there.
We want to be there to help youin any way we can, even if it's
making a connection to theright person.
Thanks for tuning in If youenjoyed this episode.
But welcome to today's podcast replay from the
Killer Bee Studios.
Let's go ahead and dive on in.
Hey everybody, thanks forjoining us tonight here at the
Killer Bee Studios.
I'm so excited you guys are allhere.
Our guests will be Yvonne andJosh, and 10 years ago and
here's what I'm talking aboutthis is a real personal story 10
(00:21):
years ago, they faced one ofthe worst, probably nightmares a
parent could have, and that iswhen their child, nick, was
diagnosed with something calledAlexander's disease.
Now, I don't know whatAlexander's disease is they're
going to inform us about thatthroughout the show but despite
that, this situation, which wasunimaginable, this unimaginable
(00:43):
challenge that they were facingthis brought them closer
together.
It strengthened their bond witheach other and it deepened
their faith.
So I wanted to ask you guys toplease join me in giving them a
warm welcome.
Let's throw some confetti as webring in our guests Yvonne and
Josh to Killer Bee Studios.
Let's throw some confetti, guys.
Thank you guys so much forcoming out and joining us today.
(01:05):
Thank you guys for joining usand being out here today with us
.
Speaker 2 (01:07):
Thanks for having us here.
Speaker 1 (01:09):
So I know you guys.
I've met you guys in real life,right?
So we met in real life becausewe all work in broadcasting, so
we kind of know each other, butwe're going to know each other
more, I think, because ofhorizons, than even in real life
yep wow, how long.
Okay.
So, yvonne, what's your metaage right now?
Speaker 2 (01:28):
um two in september wow yeah, because josh got me my
headset for my birthday inseptember nice.
Speaker 1 (01:38):
Now, josh, how long have you been on?
Because I mean you're stillworking out right now.
I know like you're stilllearning controls and well,
you'll be, I suppose, two in, desuppose because you got your
three months after.
Speaker 3 (01:47):
Yeah, not much longer after you, because I like yours
so much as I got to get one formyself.
Speaker 1 (01:51):
So yeah, awesome, awesome, here's two well and
we're so happy that you guys arehere and part of the community.
I want to say again thank you,because you guys just courage to
come share nick's story with ustonight, and your journey is,
for me, it's inspiring, but it'salso humbling that you guys
would come to the studios hereto open your hearts, to share
this.
So so, to start out, I'd liketo ask you guys could you tell
(02:14):
us a little bit about Nick?
What was he like and what aresome of your cherished moments
together with Nick?
Speaker 2 (02:38):
Um well, he was the sweetest little boy and had the
biggest smile and he was a bigflirt kitchen floor and pulling
her fur and she head butted himand he made the funniest.
Look like what did you just doto me?
Like he was so offended by this.
Speaker 1 (02:54):
It was hilarious when you guys shared your story with
me a little bit about thealexander's disease.
I don't, I don't really knowwhat, what that is.
Uh, can you guys explain to uswhat, like what is the
alexander's disease and how itaffected nick?
Speaker 3 (03:10):
take him from day one , okay, when he was born, up
until yeah um alexander'sdisease.
Speaker 2 (03:16):
I'll explain what that is first.
Alexander disease is a terminalbrain disorder.
So if you think of um, so hisbrain did not produce myelin.
Myelin if you think of myelinis like if you think of a wire
and it has like a coating aroundit to protect the wires inside
(03:36):
of it.
Right, his brain did notproduce that to protect his
brain nerves from damage.
That's the best way to describeit.
When Nick was about six monthsold, he wasn't meeting
milestones like most babies do,like sitting up and crawling and
all of that and being able tohold his head up straight.
(03:58):
He wasn't doing that and hispediatrician was like you know.
This reminds me of a disorderthat I read about and we're like
what do you mean?
And he said yeah, thisAlexander disease that he read
about when he was in medicalschool and he said I would love
to send him for text testing forit because he has these
symptoms and before we couldeven start that process at 10
(04:21):
months old he had a stroke.
We could even start thatprocess at 10 months old he had
a stroke Wow.
Yeah, so we ended up in thehospital for gosh that was the
first time.
Yeah, yeah, like three months.
Speaker 3 (04:34):
That's when.
That's really when all theeverything kind of came to a
understanding that we knew thatthere was something wrong and we
didn't know what it was.
So it was time to startinvestigating.
Speaker 2 (04:47):
Yeah, we didn't end up getting the genetic testing
because that's the only way totest, for it is through genetic
testing.
We didn't end up getting thatdone because of insurance issues
until he was about two yearsold.
Speaker 1 (04:59):
Okay.
Speaker 2 (05:01):
And at that point we got the results and it was
exactly what his pediatricianthought it was and within maybe
two months of getting diagnosed,he lost the ability to swallow.
So he couldn't eat, or eat foodor anything, take anything
orally.
(05:21):
So he ended up with a feedingtube and it just progressed from
there wow, then that actuallywas what.
Speaker 3 (05:28):
One of the things I was going to ask you guys too is
like going through this youguys had never heard of this
alexander disease either no youknow what I would tell anybody
who's not sure about somethingdon't google it yeah, because
you're you're gonna get theworst possible and of course we
googled it and you know and andthen you just like oh no what
(05:52):
about this information now.
so that's kind of that's how itall started as far as trying to
gather information and trying tounderstand what alexander
disease was.
You know his brain wasbasically short-circuiting, it
was getting zapped because youknow his brain wasn't making the
(06:13):
mile in to keep things fromcolliding, and you know so he
was shorting out inside his headas you guys started learning
about this.
Speaker 1 (06:20):
what kind of challenges did you face as a
family?
Like because I couldn't imagineI mean going.
I'm imagining that you probablyhave a lot of in and out of
time at the hospital and stuff.
So like take us back to that.
Like how did it really, whatwere some of those challenges
that you guys were facing?
Speaker 2 (06:35):
Well, nick ended up in the hospital when he had the
feeding tube, and so we were inthere for a couple of months and
then home, and then he ended uphaving to have a trach surgery.
So he had a trach so he canbreathe, and then he was vent
dependent and I was the one thathad to be in the hospital with
him because I wasn't working,because he was sick his whole
(06:56):
life.
And so josh was an hour awayhere where we live now where we
live, and I was an hour, youknow, in fargo, while he was
home having to work.
Speaker 1 (07:08):
I had to be at the hospital with nick, so we didn't
see each other until saturdaysand then he had to go home on
sundays well, that had to betough, as as a couple because I
mean that's the one thing youwant is when you're going
through something as a couple,you want to, you want to I mean
you're obviously going throughit together but you're separated
.
So how, how difficult was thatCause?
(07:29):
I mean there had to be timesthat you felt like as a as a dad
, as a father, that had to hityou in some ways too.
That was probably different.
Speaker 3 (07:36):
When I realized that, um, as you know, guys want to
fix stuff.
That's just how we're wired.
You know we want to fix stuff.
That's just how we're wired.
You know we want to fix things.
And this was something that Icould not fix, so I did what I
could to make the situation.
You know, I, I went to work, Imade, I made money, I tried to
(07:58):
keep the you know, keep the boatfloating, I guess, so to speak.
You know.
And then um, I wasn't alwaysavailable to.
I mean, I was only an hour away, so if I needed to cannonball
down there I could, but for themost part we were living
separate for the time that Nickwas in the hospital and six
months that was, that was a longtime.
(08:19):
I mean, it was, you know, thethe first time he he was in, for
he was in the hospital forabout six months and then, um,
we did finally get him stable sowe could bring him home, you
know.
But you know, for for sixmonths of his life we were apart
, basically apart, for sixmonths trying to figure out a
(08:41):
plan of action for him wow, andhow old was he at this time?
Speaker 2 (08:46):
Three.
Speaker 1 (08:47):
Three or two?
No, he was two at that time.
Yeah, he was two.
Speaker 2 (08:51):
Yeah, and it was.
We were juggling differentthings.
He's at home juggling, workingfull time and paying bills and
everything, and I was at thehospital watching over Nick and
setting up differentappointments and surgeries
because he had multiplesurgeries too.
Speaker 3 (09:08):
She had to make all these decisions.
Speaker 2 (09:10):
Without him.
You know, she called me, I meanobviously we made the decisions
together over the phone, but hejust couldn't physically be
there.
Speaker 1 (09:18):
Right right, Is this a disease that's pretty common?
Speaker 2 (09:22):
No, it's very, very rare.
It is a male dominant genemutation which josh is a carrier
of um.
So if we ever had any morechildren, the likelihood of
having another child disorder isalmost 100 oh wow, really.
Speaker 1 (09:41):
They said it was like 99.6 something.
Wow, wow, I did not know that.
Speaker 2 (09:48):
But we know of over probably over 100 families that
have a child with this disorderstill living, or yeah.
Speaker 1 (09:57):
So was it like so the hospital you guys were going to
, did you guys get a lot ofsupport from the hospital too?
Did you guys get a lot ofsupport from the hospital too?
Absolutely yes.
Speaker 2 (10:06):
The staff was amazing .
A lot of the doctors and nursesthat we dealt with have become
like family to us.
Speaker 3 (10:12):
Oh, that's awesome yeah, and they didn't know
anything about this diseaseeither.
Really it took somebody veryspecialized to understand it,
because they've dealt it andresearched it and dug into it in
between.
You know, uh nick got to, hegot to fly everywhere.
He, you know, we got uhflighted, flighted down to
(10:48):
rochester to the mayo clinicdown there, mayo Clinic who has
patients with this disease.
Speaker 2 (10:56):
Yeah, she actually wrote a book about Alexander
disease and she studied it.
Speaker 1 (11:02):
I want to continue to dig into this story a little
bit.
Disease and she studied it.
I want to continue to dig intothis story a little bit.
You know, I think it'simportant to talk about these
things because life isn't alwaysgoing to go as we would hope
and during those times it'sleaning into communities and
friends and people being therein your corner that really helps
pull you through.
At least that's from myexperience, and it sounds like
(11:23):
you guys are already talkingabout that right now.
With the connections you madeat the hospitals, People you
didn't even know startedbecoming friends.
You said you're still friendswith a lot of them today.
Speaker 2 (11:31):
I'm still friends with a lot of them today.
That's amazing Between thehospital staff and our church
family.
We wouldn't have been able toget through that without all of
them.
Speaker 1 (11:42):
So I want to encourage you guys, as we
continue to listen to this story, think about that.
Like I don't know, the thingabout here is in Horizons is
like, okay, yeah, we're allavatars, but we're real people
in real life and we all dealwith stuff too.
So, even if you can't findfriends that connect with in
real life, connect with peoplein here.
There's amazing people in herethat want to be there to help
each other.
So, whatever you're goingthrough, find someone you can
(12:03):
trust to lean on, to share andshare those things with.
You know, as you guys are goingthrough this, I was talking to
Mrs Killer Beast.
I'm so sad that she's not herebecause I know she was really,
you know, excited to talk to youguys about this.
But one of the things that meand her were talking about as we
were processing your, when youguys submitted the application
to come share your story, and wewere going through that One of
(12:25):
the things that we were talkingabout is some of our own
tragedies that we've went in ourlife, that we've went through,
and I'm not going to go intothat.
We can talk about that later.
But one of the things I didwant to point out is that when
we were going through thesethings in our lives that we did
not expect to happen, when thattrauma hit in our lives, we
noticed that we both copetotally different with trauma
(12:46):
and I would love to ask you guysdid you guys notice that any
ways that you guys were copingdifferently?
Speaker 2 (12:51):
Oh yeah.
Speaker 3 (12:52):
Yeah, you're talking like after he passed, kind of
thing, or during.
Speaker 1 (12:58):
You could be both.
However, I know ours was aftera passing, but because we both
were excited beforehand and well, I guess I might as well just
say it because I won't go intoit, but we had a miscarriage and
so we were really excited, butthen when we lost the baby, it
was very, it was different forboth of us.
So I'm sure like, how was thatfor you guys?
Speaker 2 (13:19):
During everything, while it was all going on, I
didn't really focus because Iwas.
My brain was all focused onNick and what you know he needed
at that time Doctors, you know,surgeries, you name it.
I didn't have time to eventhink about my emotions at the
time of what was going on.
It wasn't until after he passedaway, it all flooded oh wow,
(13:45):
she didn't sleep, you know, shewas in the fight or flight mode.
Speaker 3 (13:49):
You know the whole time.
It took me literally literallyfor five years while he was here
.
Every day it was fight orflight mode for her, you know
having to make all thesedecisions.
Having to be strong, having tohave your guard up, having to.
You know what I mean make allthese decisions and you know.
Speaker 2 (14:07):
And yeah, wow, yeah I felt like my phone was attached
to my head because I couldn'tput it down, because I, if I put
it down, what if I miss a callfrom?
A doctor about a surgery orwhatever.
Speaker 1 (14:21):
Wow.
Speaker 2 (14:22):
So then, after he had passed, and it all was After-
he passed and it was weirdbecause there was this quietness
and it was an unsettlingquietness for me.
Speaker 3 (14:36):
I really the way I dealt with it.
I guess, during those times ofhigh stress, tough decisions,
what do you do?
What doctors does he have tosee next?
Is he going to have to go belife flighted somewhere?
I mean, when we went to thehospital, we lived in the
(14:56):
hospital for months at a time.
This was not just a couple dayshere.
You're fine, go home.
Speaker 2 (15:06):
This was between three and six-month spurts.
Speaker 3 (15:10):
Yeah, he would have to have a surgery.
He had shunts placed in hishead.
He had a trach.
Speaker 2 (15:18):
If you don't know what a shunt is, it's a device
that goes in the head,underneath the skin, to um drain
fluid from the brain, becausehe had um hydrocephaly, which is
fluid on the brain, and it putspressure on the brain which can
harm you, and then it drains itdown to your, your, your
(15:40):
cerebral spinal fluid.
Wow, I couldn't think.
Yeah.
The body drains it outnaturally.
Speaker 3 (15:46):
He went in for a couple of those surgeries and he
had this, and he had that andhe had.
You know, it was like this longlist.
He's probably had over 20surgeries and he was flown
everywhere because he couldn'ttravel.
You know, he couldn't.
He couldn't drive anywhere, sohe'd get a plane ride here
helicopter ride there whateverwhatever it was.
(16:10):
But how I coped during thosetimes like if we happen to be
close to home, when I could work, as crazy as it sounds, I would
deal with the hard stuff, plowthrough it and then I would run
to the golf course as fast as Icould to clear my head for a
couple hours before having todive back into reality, I guess
(16:32):
would be the way to describe itand I didn't want to do any of
those things.
Speaker 2 (16:36):
I just wanted to be right there with him in that
room and the nurses wouldliterally grab me and pull me
out of there and they're like goaway in a nice way go away for
a couple of hours, go dosomething.
I don't care what you do, butget out of here.
Speaker 1 (16:50):
Oh yeah, that's, that's tough.
Speaker 2 (16:52):
That was like one of the hardest things is leaving
that room, but knowing he was ingood hands.
Speaker 1 (16:58):
Yeah, wow.
I couldn't even imagine.
That.
I mean, it makes me think about, like you know, when we got in
here into Horizons, one of themain reasons we got involved was
I put on a headset and Icouldn't shake the feeling that
there were going to be people.
And there are people we'vealready met several of them that
have come into Horizons andthey put on the headset to try
(17:19):
to escape things that they'regoing through in life, but when
they take off the headset theystill have those problems.
So it's like how do we come inhere and be real with people and
be a light and help each otherand do life together as much as
we can from all places aroundthe world?
And these headsets, this isanother place to escape, but
it's also another place toconnect.
(17:39):
Uh, so, as you guys are goingthrough this, how did you, how
did you guys deal with the grief?
Like during that time if youguys don't mind sharing like
what were some of the things youfound?
Like you said, to kind of get abreak, you would go golfing.
Uh, after he, after he, afterhe passed, how did you guys cope
with the grief?
Did you guys do that?
Was it the same or was itdifferent?
Speaker 3 (18:03):
There was something.
Perfect timing happened.
When he did pass away, he wasstaying in a nursing facility
about two hours away from usbecause we couldn't provide the
care at our home, about twohours away from us.
So cause we couldn't providethe care at our home.
Speaker 2 (18:20):
So the backstory is Nick required 24 hour nursing
care because he was trach andventilator dependent since he
was from three to almost five.
We couldn't get nursing carefor him in our home any longer
because it had to be 24 hoursand it just wasn't available.
And so there was a live ininfacility here in North Dakota,
(18:42):
two, three hours away from us,for kids with special needs, and
so we ended up making thedecision to move him there, and
so we would go up every weekendand visit and then drive home
(19:04):
drive home.
Speaker 3 (19:05):
Yeah, well, and uh it uh just shy of his fifth
birthday.
Um, the doctors at the facilitynoticed that he was, he was
starting to decline, you know,and everything, and and uh.
So we were again.
We were on watch 24 7 on guard.
Uh, ready to go, ready to jump?
I mean we can still pack a baguh to to go in like three
minutes.
Yeah, really, yeah, oh my gosh,yeah, we were anywhere we were
(19:28):
the the the day that he passedaway.
Speaker 2 (19:31):
We were there visiting him.
We left that morning and he wasreally sleepy that day.
They said, and so we're like,okay, we, we're still going to
come, we're going to come andsee him.
And we knew he had an infection.
He had an infection in histrach, which was very common,
and we were like, okay, we'rejust going to go.
So we went there.
Everything was fine.
He slept the whole time we werethere.
(19:52):
But I know he knew we werethere because when I was talking
to him he would squeeze my hand, and so then we were there
until the afternoon.
We left at three, like wealways would do, and we got home
and my phone rang and it washis doctor and she said you need
to come back.
So we got on the road and wentback.
(20:16):
And we were there Ten minutesand in 10 minutes he passed away
Like that quick.
Speaker 3 (20:26):
It was time.
And there was no other way todescribe it other than the
doctors called, and that'spretty much how she said it.
She says you guys need to comeback.
She didn't go into any detail,but we knew from the sound of
her voice what was going tohappen.
Wow, yeah.
Speaker 1 (20:47):
We have believers that come here, we have people
that aren't believers, and forme, I just want to talk to you
guys about that, because I knowyou guys are believers, you guys
are in Christian broadcasting,and how did this experience
affect your faith and did itchange your relationship with
God?
Because I mean, there's beentimes in my life when I go
through things and I'm confusedand going God, what the heck is
(21:09):
going on?
Why is this happening?
Like, take me back to that.
How did this affect your faithin your relationship with God?
Speaker 2 (21:19):
It's weird saying this, but I never questioned
because I don't know why, but Ijust like I had this feeling
like, even though this ishappening, this was you know.
Speaker 3 (21:30):
I know it's cliche to say, but it wasn't god's plan,
and I just felt like that we hadI guess I just always had peace
with it well, Well we had a,you know, we've had an amazing
church family for many, manyyears, so we were surrounded by
prayer warriors all the time andyou know we called on them all
(21:55):
the time.
You know Nick's not doing well,all I'd have to do is throw up
a message on wherever Facebook,throw a text whatever, and I
knew that all the prayerwarriors would be there lifting
Nick up, lifting us up, you know.
And to have that, to know thatthere are people with you in it,
(22:16):
even though they're not in it,but they're there with you.
You know I're not in it, butthey're there with you, you know
I guess that would be the bestway to describe it to have that
support is so incredible and asfar as our faith goes, I mean I
I I guess I'm I never reallystruggled with it because, you
know, I, I knew I knew the Lordand I knew his plans were going
(22:40):
to be good.
He's going to take.
He's going to take whatever wasmeant to be bad and to destroy
you and flip it and turn it intosomething good, and we saw
evidence of that the whole timeNick was alive you know because
we would.
He had everybody.
(23:03):
All my friends knew him,everybody knew him.
You know, whether it wasknowing him in person, most of
them had never met him yeah butthey knew him through us, yeah
we were open books.
Speaker 2 (23:16):
We we always shared on facebook and caring bridge
about everything, what was goingon every single day.
Josh was really good aboutupdating everybody.
I was not.
I was a little busy.
Well, if I didn't update,people would message me and say
hey, what's going on, you knowso everybody was plugged in and
ready to go, Kind of like you'reyou know whatever situation you
(23:38):
know.
Speaker 3 (23:39):
You need to know, because you're on the edge of
your seat.
What's next?
What's next, how can we pray?
Speaker 2 (23:44):
And that's what happened, and one of the amazing
things, though through all ofthat trauma that was going on
with him, there were many peoplereaching out to Josh and I and
telling us how Nick's story thatyou know it was still going on
changed their lives.
People surrendered their lifeto Christ because of Nick's
(24:07):
story.
Speaker 1 (24:08):
Wow.
That's a beautiful thing isthat you can't see the impact
that's happening at that moment,because you guys are in the mix
of everything happening.
That's what you guys.
You guys are in this this, thismess right now and you guys are
trying to.
You guys are busy trying tokeep things going, but his hands
are at work, yeah, and otherpeople are seeing it go ahead
josh, it was like they.
Speaker 3 (24:28):
They wonder what's different.
What is different?
This sick, this circumstancethat these people are in right
now would is meant to destroypeople, is meant to, you know,
turn their worlds upside downand send them down a path that
they're not, that they don'twant to be on, and that never
happened to us because of afoundation and a family that we
(24:52):
had.
You know that we could call onat any given time and it was
absolutely amazing just havingthat support.
Speaker 1 (25:00):
Wow, the support that seems like like such a key
piece to this.
It's hard to believe.
I know me and Mrs Clearby talkabout it at times when we know
some of our loved ones that aregoing through things that don't
have that relationship, and it'slike I can't even wrap my mind
around what it would be likegoing through that, not having
that faith and having thatknowing that, even though we
(25:22):
can't make sense of things,god's at work here and it's
going to be used for the good,for the good of God, and it's a
it's a good place to be in sucha bad place that you're at, you
know, going through that season.
Speaker 3 (25:34):
The day that we, the day that we had to drive back
down and and the day that hepassed away, it was I, I don't
know how to describe it otherthan it was like the heaviness
was gone.
Yeah, we didn't have to worryabout him anymore.
You know, we knew that he washome in the arms of jesus.
(25:56):
You know that was we knew that.
but I mean, yeah, it hurt.
It hurt really hard, really bad, and that day we had a blizzard
that hit and we weren't able todrive the two hours back home.
So we were put up in a hotelwhich turned out to be in a
hotel for two days because weended up getting like two feet
(26:18):
of snow.
Speaker 2 (26:21):
we ended up getting like two feet of snow, and it
was actually a blessing indisguise, because we were
stranded there in this smallhotel and we turned our phones
off and we just stayed there,just us and just we.
Speaker 3 (26:33):
Didn't want to talk to anybody and we just needed to
soak everything in thathappened yeah, before, before
all the planning or anythingtook off, it was just like we
had two complete days of nothing, just each other yeah and and
time to breathe?
I guess would be, and it was I,it would it.
(26:57):
It's strange would be a goodway to describe it, because
we've been running and on highlevels of everything for five
years straight through and then,all of a sudden, all the worry
and all the crazy and everythingwas over.
Speaker 2 (27:13):
And it was just quiet .
Wow, wow, an eerie quiet.
Speaker 3 (27:17):
So we soaked in the peace of a few days before
everything planning of thefuneral and the family and
letting everybody know what'sgoing on.
So we had that downtime andthat was amazing.
So that was kind of like thebeginning of God knew what we
needed.
Speaker 1 (27:37):
He gave us a couple of days of peace, amen, what we
needed.
He gave us a couple of days, apiece that's amen, amen.
You know, as you guys continueto move forward, what are like,
what are some of the things youguys do now and today, and
moving forward to keep nick'smemory alive?
Speaker 2 (27:51):
um.
Every year we go to the anncarlson center, which is where
he lived, and we take schoolsupplies to the kids there.
Um geez, what else do we do?
Speaker 3 (28:03):
we have ice cream on his birthday yes, that was the
thing that we started when hewhen he was in uh, when he was
in the hospital, we starteddoing that with him, because
that was one of the only thingsthat he could eat was ice cream
so we'd, we'd take him out forice cream.
So we every.
Speaker 2 (28:20):
Vanilla ice cream cone.
Speaker 3 (28:22):
Yep, every birthday of his we go and you know we
shared that with everybody andsays, okay, have ice cream in
honor of Nick today.
Speaker 2 (28:32):
Oh, that's awesome.
So our friends would meet usand we'd go to Dairy Queen and
have ice cream.
Speaker 3 (28:36):
We have all the friends that have kids.
The same age as Nick would havebeen no, he'd have been, what?
16?
.
Speaker 2 (28:46):
He would have been 16 in April.
Speaker 3 (28:48):
Yeah, 16 in April and we have lots of friends with
16-year-old kids and it's likewe see them and the things that
they're into and the stuff.
So that's another thing.
It's like how can we cheer onyour kids, you know?
What would?
What are they into?
What would our?
It makes you think what wouldhe be into at 16?
(29:08):
You know.
Speaker 1 (29:09):
Yeah, yeah, wow, wow.
Speaker 2 (29:12):
He loved music so I know he would be into music.
Speaker 1 (29:16):
Yeah, he would have loved, wouldn't you he?
Speaker 2 (29:19):
had an obsession with drums.
Speaker 3 (29:22):
When the word of Nick started spreading all over the
place.
I mean everywhere.
I've got friends who aremusicians that play in Nashville
, you know and all of a suddenthese drumsticks started coming
in.
Speaker 2 (29:39):
Autographed drumsticks from all these bands.
Autographed drumsticks frombands and things Lita, ford and
all yeah.
Speaker 1 (29:45):
That's awesome, yeah, baseball players meeting him.
Speaker 2 (29:50):
There was a baseball player that came to see him in
the hospital.
Speaker 1 (29:53):
I want to encourage people.
It's beautiful to see peoplecome together when something
like this is happening right,because they know they need
support, and I want to encourageas we get ready we're going to
get ready to wrap up and I wantto thank you guys all for coming
on.
I know it's a little bit of atougher topic to listen to, but
I think it's so importantbecause we all go through
different things.
It might not be exactly this,but we all go through hardships
(30:16):
and the people that we meet,even in here in Horizons,
they're going through thingsthat we don't know and it's so
important for us to rememberthat and just like how people
came together to show you guyslove and that you're supported,
and they knew what was going on.
I want to encourage everybodyhere when you come in and you
meet people here in Horizons,treat them that way, without you
(30:36):
knowing what's going on, buttreat them that way now, even if
they're not treating you great.
Show them that you value themand you love them, that you care
for them.
You just don't know what peopleare going through and I want to
thank you guys both for comingout here.
Again, I'm truly grateful thatyou guys both came here and
chose that you guys wanted tocome to Killer Bee Studios to
(30:58):
share Nick's story here, becausethat is so, so honoring and
humbling for the studios here isto be able to let Nick's
stories be heard here.
So I want to thank you guys forthat, and I also I would love to
ask you guys, as we get readyto wrap up and afterwards, you
guys will take the table off thestage here and we can all come
(31:18):
up here and get a selfietogether.
We'd love to get a selfie ofeverybody and Dina will play the
outro music and you guys cancome on up.
But before we close, I wouldlike to ask you just just this.
I'd like to ask you what?
What motivated you, motivatedyou both to come and open your
hearts here to come share nextstory with us?
Speaker 2 (31:37):
Because there could be somebody here that has been
in a similar situation and ifthat has been any of you, feel
free to talk to us.
We would love to talk to youabout it.
Speaker 3 (31:49):
We're 11 years past.
The crazy I guess would be andthis might be a fresh thing for
a lot of people.
Maybe the hurt's really fresh,Maybe you lost somebody in the
last year or so, you know like,how do you get through it?
(32:10):
What do I do, you know?
I mean, there's no right way todo any of this.
Yeah, you know, that's what Iwould tell you first of all is
that there is no right way to doit.
Speaker 2 (32:23):
Yeah, there's no right way to grieve.
Speaker 3 (32:25):
Everybody grieves in their own way, but you have to.
You got to go through it.
You know, is it easy?
No, but you got to.
Speaker 1 (32:33):
That's good.
Well, you know, if anybody'sgoing through anything, let us
know, like talk to us, becausethere's people like Metacoach
and stuff like that, people thatwe can connect you with.
We have pastors here that wecan connect with from the
churches here in Horizons and ifyou're listening to the podcast
, you can click the link in thepodcast notes and contact us and
we'll help put you inconnection with somebody that
(32:54):
can be there.
We want to be there to help youin any way we can, even if it's
making a connection to theright person.
Thanks for tuning in If youenjoyed this episode.
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