New Horizons: A Metaverse Podcast Experience at the Killer Bee Studios

A Child's Battle with Alexander's Disease with Yvonne & Josh Jones

April 02, 2024 Yvonne & Josh Jones Season 3 Episode 18
A Child's Battle with Alexander's Disease with Yvonne & Josh Jones
New Horizons: A Metaverse Podcast Experience at the Killer Bee Studios
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New Horizons: A Metaverse Podcast Experience at the Killer Bee Studios
A Child's Battle with Alexander's Disease with Yvonne & Josh Jones
Apr 02, 2024 Season 3 Episode 18
Yvonne & Josh Jones

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.

Support the Show.

Ways to Join Us LIVE 👇
Live shows are on Thursdays at 8pm EST (unless it's a holiday or fifth Thursday of the month)

Affiliate links are used when possible to help support this podcast.

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Show Notes Transcript Chapter Markers

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.

Support the Show.

Ways to Join Us LIVE 👇
Live shows are on Thursdays at 8pm EST (unless it's a holiday or fifth Thursday of the month)

Affiliate links are used when possible to help support this podcast.

Speaker 1:

But welcome to today's podcast replay from the Killer Bee Studios. Let's go ahead and dive on in. Hey everybody, thanks for joining us tonight here at the Killer Bee Studios. I'm so excited you guys are all here.

Speaker 1:

Our guests will be Yvonne and Josh, and 10 years ago and here's what I'm talking about this is a real personal story 10 years ago, they faced one of the worst, probably nightmares a parent could have, and that is when their child, nick, was diagnosed with something called Alexander's disease. Now, I don't know what Alexander's disease is they're going to inform us about that throughout the show but despite that, this situation, which was unimaginable, this unimaginable challenge that they were facing this brought them closer together. It strengthened their bond with each other and it deepened their faith. So I wanted to ask you guys to please join me in giving them a warm welcome. Let's throw some confetti as we bring in our guests Yvonne and Josh to Killer Bee Studios. Let's throw some confetti, guys. Thank you guys so much for coming out and joining us today. Thank you guys for joining us and being out here today with us.

Speaker 2:

Thanks for having us here.

Speaker 1:

So I know you guys. I've met you guys in real life, right? So we met in real life because we all work in broadcasting, so we kind of know each other, but we're going to know each other more, I think, because of horizons, than even in real life yep wow, how long. Okay. So, yvonne, what's your meta age right now?

Speaker 2:

um two in september wow yeah, because josh got me my headset for my birthday in september nice.

Speaker 1:

Now, josh, how long have you been on? Because I mean you're still working out right now. I know like you're still learning controls and well, you'll be, I suppose, two in, de suppose because you got your three months after.

Speaker 3:

Yeah, not much longer after you, because I like yours so much as I got to get one for myself.

Speaker 1:

So yeah, awesome, awesome, here's two well and we're so happy that you guys are here and part of the community. I want to say again thank you, because you guys just courage to come share nick's story with us tonight, and your journey is, for me, it's inspiring, but it's also humbling that you guys would come to the studios here to open your hearts, to share this. So so, to start out, I'd like to ask you guys could you tell us a little bit about Nick? What was he like and what are some of your cherished moments together with Nick?

Speaker 2:

Um well, he was the sweetest little boy and had the biggest smile and he was a big flirt kitchen floor and pulling her fur and she head butted him and he made the funniest. Look like what did you just do to me? Like he was so offended by this.

Speaker 1:

It was hilarious when you guys shared your story with me a little bit about the alexander's disease. I don't, I don't really know what, what that is. Uh, can you guys explain to us what, like what is the alexander's disease and how it affected nick?

Speaker 3:

take him from day one, okay, when he was born, up until yeah um alexander's disease.

Speaker 2:

I'll explain what that is first. Alexander disease is a terminal brain disorder. So if you think of um, so his brain did not produce myelin. Myelin if you think of myelin is like if you think of a wire and it has like a coating around it to protect the wires inside of it. Right, his brain did not produce that to protect his brain nerves from damage. That's the best way to describe it. When Nick was about six months old, he wasn't meeting milestones like most babies do, like sitting up and crawling and all of that and being able to hold his head up straight.

Speaker 2:

He wasn't doing that and his pediatrician was like you know. This reminds me of a disorder that I read about and we're like what do you mean? And he said yeah, this Alexander disease that he read about when he was in medical school and he said I would love to send him for text testing for it because he has these symptoms and before we could even start that process at 10 months old he had a stroke. We could even start that process at 10 months old he had a stroke Wow.

Speaker 2:

Yeah, so we ended up in the hospital for gosh that was the first time. Yeah, yeah, like three months.

Speaker 3:

That's when. That's really when all the everything kind of came to a understanding that we knew that there was something wrong and we didn't know what it was. So it was time to start investigating.

Speaker 2:

Yeah, we didn't end up getting the genetic testing because that's the only way to test, for it is through genetic testing. We didn't end up getting that done because of insurance issues until he was about two years old.

Speaker 1:

Okay.

Speaker 2:

And at that point we got the results and it was exactly what his pediatrician thought it was and within maybe two months of getting diagnosed, he lost the ability to swallow. So he couldn't eat, or eat food or anything, take anything orally. So he ended up with a feeding tube and it just progressed from there wow, then that actually was what.

Speaker 3:

One of the things I was going to ask you guys too is like going through this you guys had never heard of this alexander disease either no you know what I would tell anybody who's not sure about something don't google it yeah, because you're you're gonna get the worst possible and of course we googled it and you know and and then you just like oh no what about this information now.

Speaker 3:

so that's kind of that's how it all started as far as trying to gather information and trying to understand what alexander disease was. You know his brain was basically short-circuiting, it was getting zapped because you know his brain wasn't making the mile in to keep things from colliding, and you know so he was shorting out inside his head as you guys started learning about this.

Speaker 1:

what kind of challenges did you face as a family? Like because I couldn't imagine I mean going. I'm imagining that you probably have 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, what were some of those challenges that you guys were facing?

Speaker 2:

Well, nick ended up in the hospital when he had the feeding tube, and so we were in there for a couple of months and then home, and then he ended up having to have a trach surgery. So he had a trach so he can breathe, and then he was vent dependent and I was the one that had to be in the hospital with him because I wasn't working, because he was sick his whole life. And so josh was an hour away here where we live now where we live, and I was an hour, you know, in fargo, while he was home having to work.

Speaker 1:

I had to be at the hospital with nick, so we didn't see each other until saturdays and then he had to go home on sundays well, that had to be tough, as as a couple because I mean that's the one thing you want is when you're going through something as a couple, you want to, you want to I mean you're obviously going through it together but you're separated. So how, how difficult was that Cause? I mean there had to be times that you felt like as a as a dad, as a father, that had to hit you in some ways too. That was probably different.

Speaker 3:

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 I could not fix, so I did what I could to make the situation. You know, I, I went to work, I made, I made money, I tried to keep the you know, keep the boat floating, I guess, so to speak. You know. And then um, I wasn't always available to. I mean, I was only an hour away, so if I needed to cannonball down there I could, but for the most part we were living separate for the time that Nick was in the hospital and six months that was, that was a long time.

Speaker 3:

I mean, it was, you know, the the first time he he was in, for he was in the hospital for about six months and then, um, we did finally get him stable so we could bring him home, you know. But you know, for for six months of his life we were apart, basically apart, for six months trying to figure out a plan of action for him wow, and how old was he at this time?

Speaker 2:

Three.

Speaker 1:

Three or two? No, he was two at that time. Yeah, he was two.

Speaker 2:

Yeah, and it was. We were juggling different things. He's at home juggling, working full time and paying bills and everything, and I was at the hospital watching over Nick and setting up different appointments and surgeries because he had multiple surgeries too.

Speaker 3:

She had to make all these decisions.

Speaker 2:

Without him. You know, she called me, I mean obviously we made the decisions together over the phone, but he just couldn't physically be there.

Speaker 1:

Right right, Is this a disease that's pretty common?

Speaker 2:

No, it's very, very rare. It is a male dominant gene mutation which josh is a carrier of um. So if we ever had any more children, the likelihood of having another child disorder is almost 100 oh wow, really.

Speaker 1:

They said it was like 99.6 something. Wow, wow, I did not know that.

Speaker 2:

But we know of over probably over 100 families that have a child with this disorder still living, or yeah.

Speaker 1:

So was it like so the hospital you guys were going to, did you guys get a lot of support from the hospital too? Did you guys get a lot of support from the hospital too? Absolutely yes.

Speaker 2:

The staff was amazing. A lot of the doctors and nurses that we dealt with have become like family to us.

Speaker 3:

Oh, that's awesome yeah, and they didn't know anything about this disease either. Really it took somebody very specialized to understand it, because they've dealt it and researched it and dug into it in between. You know, uh nick got to, he got to fly everywhere. He, you know, we got uh flighted, flighted down to rochester to the mayo clinic down there, mayo Clinic who has patients with this disease.

Speaker 2:

Yeah, she actually wrote a book about Alexander disease and she studied it.

Speaker 1:

I want to continue to dig into this story a little bit. Disease and she studied it. I want to continue to dig into this story a little bit. You know, I think it's important to talk about these things because life isn't always going to go as we would hope and during those times it's leaning into communities and friends and people being there in your corner that really helps pull you through. At least that's from my experience, and it sounds like you guys are already talking about that right now. With the connections you made at the hospitals, People you didn't even know started becoming friends. You said you're still friends with a lot of them today.

Speaker 2:

I'm still friends with a lot of them today. That's amazing Between the hospital staff and our church family. We wouldn't have been able to get through that without all of them.

Speaker 1:

So I want to encourage you guys, as we continue to listen to this story, think about that. Like I don't know, the thing about here is in Horizons is like, okay, yeah, we're all avatars, but we're real people in real life and we all deal with stuff too. So, even if you can't find friends that connect with in real life, connect with people in here. There's amazing people in here that want to be there to help each other. So, whatever you're going through, find someone you can trust to lean on, to share and share those things with. You know, as you guys are going through this, I was talking to Mrs Killer Beast. I'm so sad that she's not here because I know she was really, you know, excited to talk to you guys about this.

Speaker 1:

But one of the things that me and her were talking about as we were processing your, when you guys submitted the application to come share your story, and we were going through that One of the things that we were talking about is some of our own tragedies that we've went in our life, that we've went through, and I'm not going to go into that. We can talk about that later. But one of the things I did want to point out is that when we were going through these things in our lives that we did not expect to happen, when that trauma hit in our lives, we noticed that we both cope totally different with trauma and I would love to ask you guys did you guys notice that any ways that you guys were coping differently?

Speaker 2:

Oh yeah.

Speaker 3:

Yeah, you're talking like after he passed, kind of thing, or during.

Speaker 1:

You could be both. However, I know ours was after a passing, but because we both were excited beforehand and well, I guess I might as well just say it because I won't go into it, but we had a miscarriage and so we were really excited, but then when we lost the baby, it was very, it was different for both of us. So I'm sure like, how was that for you guys?

Speaker 2:

During everything, while it was all going on, I didn't really focus because I was. My brain was all focused on Nick and what you know he needed at that time Doctors, you know, surgeries, you name it. I didn't have time to even think about my emotions at the time of what was going on. It wasn't until after he passed away, it all flooded oh wow, she didn't sleep, you know, she was in the fight or flight mode.

Speaker 3:

You know the whole time. It took me literally literally for five years while he was here. Every day it was fight or flight mode for her, you know having to make all these decisions. Having to be strong, having to have your guard up, having to. You know what I mean make all these decisions and you know.

Speaker 2:

And yeah, wow, yeah I felt like my phone was attached to my head because I couldn't put it down, because I, if I put it down, what if I miss a call from? A doctor about a surgery or whatever.

Speaker 1:

Wow.

Speaker 2:

So then, after he had passed, and it all was After- he passed and it was weird because there was this quietness and it was an unsettling quietness for me.

Speaker 3:

I really the way I dealt with it. I guess, during those times of high stress, tough decisions, what do you do? What doctors does he have to see next? Is he going to have to go be life flighted somewhere? I mean, when we went to the hospital, we lived in the hospital for months at a time. This was not just a couple days here. You're fine, go home.

Speaker 2:

This was between three and six-month spurts.

Speaker 3:

Yeah, he would have to have a surgery. He had shunts placed in his head. He had a trach.

Speaker 2:

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, because he had um hydrocephaly, which is fluid on the brain, and it puts pressure on the brain which can harm you, and then it drains it down to your, your, your cerebral spinal fluid. Wow, I couldn't think. Yeah. The body drains it out naturally.

Speaker 3:

He went in for a couple of those surgeries and he had this, and he had that and he had. You know, it was like this long list. He's probably had over 20 surgeries and he was flown everywhere because he couldn't travel. You know, he couldn't. He couldn't drive anywhere, so he'd get a plane ride here helicopter ride there whatever whatever it was.

Speaker 3:

But how I coped during those times 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, plow through it and then I would run to the golf course as fast as I could to clear my head for a couple hours before having to dive back into reality, I guess would be the way to describe it and I didn't want to do any of those things.

Speaker 2:

I just wanted to be right there with him in that room and the nurses would literally grab me and pull me out of there and they're like go away in a nice way go away for a couple of hours, go do something. I don't care what you do, but get out of here.

Speaker 1:

Oh yeah, that's, that's tough.

Speaker 2:

That was like one of the hardest things is leaving that room, but knowing he was in good hands.

Speaker 1:

Yeah, wow.

Speaker 1:

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 the main reasons we got involved was I put on a headset and I couldn't shake the feeling that there were going to be people. And there are people we've already met several of them that have come into Horizons and they put on the headset to try to escape things that they're going through in life, but when they take off the headset they still have those problems. So it's like how do we come in here and be real with people and be a light and help each other and do life together as much as we can from all places around the world? And these headsets, this is another place to escape, but it's also another place to connect.

Speaker 1:

Uh, so, as you guys are going through this, how did you, how did you guys deal with the grief? Like during that time if you guys don't mind sharing like what were some of the things you found? Like you said, to kind of get a break, you would go golfing. Uh, after he, after he, after he passed, how did you guys cope with the grief? Did you guys do that? Was it the same or was it different?

Speaker 3:

There was something. Perfect timing happened. When he did pass away, he was staying in a nursing facility about two hours away from us because we couldn't provide the care at our home, about two hours away from us. So cause we couldn't provide the care at our home.

Speaker 2:

So the backstory is Nick required 24 hour nursing care because he was trach and ventilator dependent since he was from three to almost five. We couldn't get nursing care for him in our home any longer because it had to be 24 hours and it just wasn't available. And so there was a live inin facility here in North Dakota, two, three hours away from us, for kids with special needs, and so we ended up making the decision to move him there, and so we would go up every weekend and visit and then drive home drive home.

Speaker 3:

Yeah, well, and uh it uh just shy of his fifth birthday. Um, the doctors at the facility noticed 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 bag uh to to go in like three minutes. Yeah, really, yeah, oh my gosh, yeah, we were anywhere we were the the the day that he passed away.

Speaker 2:

We were there visiting him. We left that morning and he was really sleepy that day. They said, and so we're like, okay, we, we're still going to come, we're going to come and see him. And we knew he had an infection. He had an infection in his trach, which was very common, and we were like, okay, we're just going to go. So we went there. Everything was fine. He slept the whole time we were there. But I know he knew we were there 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 we always would do, and we got home and my phone rang and it was his doctor and she said you need to come back. So we got on the road and went back.

Speaker 2:

And we were there Ten minutes and in 10 minutes he passed away Like that quick.

Speaker 3:

It was time. And there was no other way to describe it other than the doctors called, and that's pretty much how she said it. She says you guys need to come back. She didn't go into any detail, but we knew from the sound of her voice what was going to happen. Wow, yeah.

Speaker 1:

We have believers that come here, we have people that aren't believers, and for me, I just want to talk to you guys about that, because I know you guys are believers, you guys are in Christian broadcasting, and how did this experience affect your faith and did it change your relationship with God? Because I mean, there's been times in my life when I go through things and I'm confused and going God, what the heck is going on? Why is this happening? Like, take me back to that. How did this affect your faith in your relationship with God?

Speaker 2:

It's weird saying this, but I never questioned because I don't know why, but I just like I had this feeling like, even though this is happening, this was you know.

Speaker 3:

I know it's cliche to say, but it wasn't god's plan, and I just felt like that we had I guess I just always had peace with it well, Well we had a, you know, we've had an amazing church family for many, many years, so we were surrounded by prayer warriors all the time and you know we called on them all 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 prayer warriors would be there lifting Nick up, lifting us up, you know. And to have that, to know that there are people with you in it, even though they're not in it, but they're there with you.

Speaker 3:

You know I're not in it, but they're there with you, you know I guess that would be the best way to describe it to have that support is so incredible and as far as our faith goes, I mean I I I guess I'm I never really struggled with it because, you know, I, I knew I knew the Lord and I knew his plans were going to be good. He's going to take. He's going to take whatever was meant to be bad and to destroy you and flip it and turn it into something good, and we saw evidence of that the whole time Nick was alive you know because we would.

Speaker 3:

He had everybody. All my friends knew him, everybody knew him. You know, whether it was knowing him in person, most of them had never met him yeah but they knew him through us, yeah we were open books.

Speaker 2:

We we always shared on facebook and caring bridge about everything, what was going on every single day. Josh was really good about updating 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 know so everybody was plugged in and ready to go, Kind of like you're you know whatever situation you know.

Speaker 3:

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:

And that's what happened, and one of the amazing things, though through all of that trauma that was going on with him, there were many people reaching out to Josh and I and telling us how Nick's story that you know it was still going on changed their lives. People surrendered their life to Christ because of Nick's story.

Speaker 1:

Wow. That's a beautiful thing is that 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, this mess right now and you guys are trying to. You guys are busy trying to keep things going, but his hands are at work, yeah, and other people are seeing it go ahead josh, it was like they.

Speaker 3:

They wonder what's different. What is different? This sick, this circumstance that these people are in right now would is meant to destroy people, is meant to, you know, turn their worlds upside down and send them down a path that they're not, that they don't want to be on, and that never happened to us because of a foundation and a family that we had. You know that we could call on at any given time and it was absolutely amazing just having that support.

Speaker 1:

Wow, the support that seems like like such a key piece to this. It's hard to believe. I know me and Mrs Clearby talk about it at times when we know some of our loved ones that are going through things that don't have that relationship, and it's like I can't even wrap my mind around what it would be like going through that, not having that faith and having that knowing that, even though we 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 such a bad place that you're at, you know, going through that season.

Speaker 3:

The day that we, the day that we had to drive back down and and the day that he passed away, it was I, I don't know how to describe it other than it was like the heaviness was gone. Yeah, we didn't have to worry about him anymore. You know, we knew that he was home in the arms of jesus. You know that was we knew that.

Speaker 3:

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 to drive the two hours back home. So we were put up in a hotel which turned out to be in a hotel for two days because we ended up getting like two feet of snow.

Speaker 2:

we ended up getting like two feet of snow, and it was actually a blessing in disguise, because we were stranded there in this small hotel and we turned our phones off and we just stayed there, just us and just we.

Speaker 3:

Didn't want to talk to anybody and we just needed to soak everything in that happened yeah, before, before all the planning or anything took 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. It's strange would be a good way to describe it, because we've been running and on high levels of everything for five years straight through and then, all of a sudden, all the worry and all the crazy and everything was over.

Speaker 2:

And it was just quiet. Wow, wow, an eerie quiet.

Speaker 3:

So we soaked in the peace of a few days before everything planning of the funeral and the family and letting everybody know what's going on. So we had that downtime and that was amazing. So that was kind of like the beginning of God knew what we needed.

Speaker 1:

He gave us a couple of days of peace, amen, what we needed. He gave us a couple of days, a piece that's amen, amen. You know, as you guys continue to move forward, what are like, what are some of the things you guys do now and today, and moving forward to keep nick's memory alive?

Speaker 2:

um. Every year we go to the ann carlson center, which is where he lived, and we take school supplies to the kids there. Um geez, what else do we do?

Speaker 3:

we have ice cream on his birthday yes, that was the thing that we started when he when he was in uh, when he was in the hospital, we started doing that with him, because that was one of the only things that he could eat was ice cream so we'd, we'd take him out for ice cream. So we every.

Speaker 2:

Vanilla ice cream cone.

Speaker 3:

Yep, every birthday of his we go and you know we shared that with everybody and says, okay, have ice cream in honor of Nick today.

Speaker 2:

Oh, that's awesome. So our friends would meet us and we'd go to Dairy Queen and have ice cream.

Speaker 3:

We have all the friends that have kids. The same age as Nick would have been no, he'd have been, what? 16?.

Speaker 2:

He would have been 16 in April.

Speaker 3:

Yeah, 16 in April and we have lots of friends with 16-year-old kids and it's like we see them and the things that they're into and the stuff. So that's another thing. It's like how can we cheer on your kids, you know? What would? What are they into? What would our? It makes you think what would he be into at 16? You know.

Speaker 1:

Yeah, yeah, wow, wow.

Speaker 2:

He loved music so I know he would be into music.

Speaker 1:

Yeah, he would have loved, wouldn't you he?

Speaker 2:

had an obsession with drums.

Speaker 3:

When the word of Nick started spreading all over the place. I mean everywhere. I've got friends who are musicians that play in Nashville, you know and all of a sudden these drumsticks started coming in.

Speaker 2:

Autographed drumsticks from all these bands. Autographed drumsticks from bands and things Lita, ford and all yeah.

Speaker 1:

That's awesome, yeah, baseball players meeting him.

Speaker 2:

There was a baseball player that came to see him in the hospital.

Speaker 1:

I want to encourage people. It's beautiful to see people come together when something like this is happening right, because they know they need support, and I want to encourage as we get ready we're going to get ready to wrap up and I want to thank you guys all for coming on. I know it's a little bit of a tougher topic to listen to, but I think it's so important because we all go through different things. It might not be exactly this, but we all go through hardships and the people that we meet, even in here in Horizons, they're going through things that we don't know and it's so important for us to remember that and just like how people came together to show you guys love and that you're supported, and they knew what was going on.

Speaker 1:

I want to encourage everybody here when you come in and you meet people here in Horizons, treat them that way, without you knowing what's going on, but treat them that way now, even if they're not treating you great. Show them that you value them and you love them, that you care for them. You just don't know what people are going through and I want to thank you guys both for coming out here. Again, I'm truly grateful that you guys both came here and chose that you guys wanted to come to Killer Bee Studios to share Nick's story here, because that is so, so honoring and humbling for the studios here is to be able to let Nick's stories be heard here.

Speaker 1:

So I want to thank you guys for that, and I also I would love to ask you guys, as we get ready to wrap up and afterwards, you guys will take the table off the stage here and we can all come up here and get a selfie together. We'd love to get a selfie of everybody and Dina will play the outro music and you guys can come on up. But before we close, I would like to ask you just just this. I'd like to ask you what? What motivated you, motivated you both to come and open your hearts here to come share next story with us?

Speaker 2:

Because there could be somebody here that has been in a similar situation and if that has been any of you, feel free to talk to us. We would love to talk to you about it.

Speaker 3:

We're 11 years past. The crazy I guess would be and this 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? What do I do, you know? I mean, there's no right way to do any of this. Yeah, you know, that's what I would tell you first of all is that there is no right way to do it.

Speaker 2:

Yeah, there's no right way to grieve.

Speaker 3:

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:

That's good. Well, you know, if anybody's going through anything, let us know, like talk to us, because there's people like Metacoach and stuff like that, people that we can connect you with. We have pastors here that we can connect with from the churches here in Horizons and if you're listening to the podcast, you can click the link in the podcast notes and contact us and we'll help put you in connection with somebody that can be there. We want to be there to help you in any way we can, even if it's making a connection to the right person. Thanks for tuning in If you enjoyed this episode.

Introduction: Meet Yvonne & Josh Jones
What Was Nick Like?
What Is Alexander Disease?
What Kind of Challenges Did You Face as a Family?
Coping with Tragedy: Friends & Community
Coping with Grief
How Did This Effect Your Faith?
Nick's Story Spread & People Responded
What Motivated You To Come Share Nick's Story in the Metaverse?