Episode 9: The Heartbeat of the Show: A Conversation with Ryder

In this very special 9th episode of Between Breaths, the tables are turned. For the past eight episodes, I have shared our family’s pediatric lung transplant journey from my perspective as a mom. But today, the heartbeat of this entire show is sitting across the microphone from me.

My son and my hero, Ryder, joins the podcast as our very first guest!

We kick things off with a much-needed "Ryder’s Fact Check," where he gently (and hilariously) corrects a few "Mom mistakes" I’ve made in past episodes and he talks candidly about the hardest parts, like early mornings, being bad with needles, and the frustration of the medical restrictions that keep him from having exotic pets or swimming in fresh water.

If you are a parent or a patient navigating the terrifying waters of transplant, this episode is for you. Ryder is living proof that you are stronger than you think and that you can make it to the other side.

Take a deep breath with us today. Ryder worked incredibly hard for every single one of them.

Between Breaths is a space for families walking through pediatric lung transplant.  The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

If you found comfort here, follow the show and share it with someone who might need to hear it at 2am.

We’re in this together.

Transcript

SPEAKER_01 0:01

Hi everyone, I'm Courtney and welcome back to Between Breaths. This podcast has always been about the before and beyond of pediatric lung transplant, the waiting, the medical math, the fear, the hope, and all the parts of the life the families often have to learn as they go. But today's episode is a little different. For the first seven episodes, you've heard the story through my voice as Ryder's mom. I've shared what it was like to watch him fight for breath, to wait for the call, to walk through transplant, and to keep learning what life looks like on the other side of it all. But today, you get to hear from the person at the very center of the story. Ryder is joining me for this episode. He is the reason this podcast exists. He is the reason I started telling the story in the first place. And if I'm being honest, he also happens to be one of the regular listeners who likes to point out the little mom mistakes I've made along the way. Not big mistakes, just the kind that happen when you're telling a story from your own memory and your child is right there reminding you that actually, no mom, that's not how it happened. So before we get into the harder parts of the journey, I wanted to make space for Ryder to help set the record straight, share his perspective, and tell some of the story in his own voice. And that matters to me because this podcast is not just about what transplant looked like from where I was standing. It's also about what it felt like for the child living it. So today we're talking about the weight, the hospital, the memories, the things I got wrong, and the parts of the story that belong to Ryder to tell. Ryder, I'm so glad you're here. Are you ready to tell your side of the story? Yeah. Okay. So before we get into the big parts of the story, I think we need to start with something important. Apparently, I've made a few mom mistakes in these episodes. Is that right? Yes. Okay, I'm gonna have you fact check me. So let's start with one of the funniest ones. I talked about Dr. Adachi and the wrong thing about where ninjas or samurais were fun. So tell me what I got wrong.

SPEAKER_00 2:06

So you said that he was from the village where um samurais were from, and actually that's wrong. And he's actually from the town or village where uh ninjas are from or were invented.

SPEAKER_01 2:18

Okay, so I got the word and the the account wrong. I get that. Yeah. Um, okay. Um was one of the times you were listening and thinking, Mom, no, that's not what happened. Is there another example? And I have one, if you don't, is when I said, I think I bought an Xbox.

SPEAKER_00 2:39

Oh yeah. We didn't have Xbox back then. We we got it like more recently, and we didn't have it back then.

SPEAKER_01 2:44

So what let's set the story straight. When we moved to Houston, what did we actually bring with us to help you entertain? Because you were younger then, it was two years ago.

SPEAKER_00 2:52

I had my iPad because I didn't have my phone back then. Okay. And then like I had my switch and I played like Cuphead and stuff like that on it. And like I had my computer that I had just gotten, and I played like balloons and like Hunter Call of the Wild on that. Okay. So it wasn't an Xbox, it was a Switch.

SPEAKER_01 3:08

And a computer. And a computer. Okay. Yeah. Well, that helps. Um Were there any other moments while you were listening to some of the podcasts and you said that's not how it happened? Do you remember any of those?

SPEAKER_00 3:21

Uh, not really.

SPEAKER_01 3:23

Okay. Um I love that you listen so closely to what I say in these stories because it matters. And I think it reminds people that transplant stories are real family stories. Um, but we're remembering from different places. I remember from one and you remember for another. So let's go back a little bit.

SPEAKER_00 3:41

All right.

SPEAKER_01 3:41

Before transplant, we were living in Houston and waiting, right?

SPEAKER_00 3:45

Yes.

SPEAKER_01 3:46

A lot of people hear about the wait list, but they don't always know what the actually feels like from a day-to-day. What did a normal day feel like while we were waiting?

SPEAKER_00 3:56

Oh, like you want me to walk you through like like and like a day in the life? Yeah, sure, day in the life of writer. All right. So I would wake up and we'd usually have like something like whether it be like uh PT or like uh like the lady that would come, like the teacher. Right. And like, yeah, but if none of that was on that date, I would just wake up, uh, go to my spot on the couch, and then watch, put on One Piece or MHA and watch that. And then I would just vary between that and my iPad, and I was like it, and that was all I did every day. So I was on oxygen and I was dying.

SPEAKER_01 4:28

Okay, well, you were on oxygen, and we were between four and seven liters.

SPEAKER_00 4:32

Yeah, it was like ten.

SPEAKER_01 4:33

And so we were on the big concentrator, so we'd wake up and we'd roll it right into the living room, right? Yeah, and we'd prop a spot on the couch.

SPEAKER_00 4:39

It was in the same spot every day. Yeah, and then when we didn't and we had to leave the house, what did we have to do? We would uh take like transition me from like the the big concentrator and we would go to like the the the tanks, and we had like like so many tanks, and we would put them on the back of the wheelchair. That's right, and then you and then we would go to the car, and then you would have to, I would have you'd have to help me in the car because I was dying and stuff and I couldn't move. And then you'd have to fold up the wheelchair and uh put it in the back. Correct.

SPEAKER_01 5:07

And this time you were in a wheelchair, but we did we you could walk. Well, yeah, you could walk. It was just really hard. Okay. Did it feel boring, stressful, normal, weird, or all of those at once when we were living there? In case you all were wondering. What'd you remember most about living at Project Joy and Hope?

SPEAKER_00 5:28

Um, like people would always come, like the the people that would pray and stuff, like yeah, they would always come to the house and stuff. Okay, did they ever bring any gifts or food? Yeah, they would they brought like baskets and stuff of like food and it's pretty great, right? Goodies and stuff, yeah. And we had our own rooms. Yeah, we had like three rooms. There was the the a backup bedroom, you your bedroom, and then my bedroom. That's right.

SPEAKER_01 5:52

And we had bathrooms and wash and dryer.

SPEAKER_00 5:53

So it was like living in a home. We had one bathroom, right?

SPEAKER_01 5:56

We had two bathrooms. I had one in mine.

SPEAKER_00 5:57

You just didn't ever see it because you were in a wheelchair and you could never get it. Yeah, then we had a small kitchen and then we had a table. Yeah. Yeah, it was pretty chill.

SPEAKER_01 6:05

Okay. We had so many appointments, right? Yeah. We had therapies, tests, breathing treatments every day almost. What would you say was the hardest part of all that for you?

SPEAKER_00 6:16

Probably like waking up early and like getting blood draws and stuff. Okay, so you think the waking up, you're not a morning person? No. I stay up till like 12 30. Okay, yeah. And I'm not a morning person. Oh, like I don't fully wake up till like early. Wait, wait. Okay. Yeah.

SPEAKER_01 6:32

So the blood draws were the worst part.

SPEAKER_00 6:33

Yeah, because like, yeah, we didn't a lot.

SPEAKER_01 6:36

We didn't a lot.

SPEAKER_00 6:37

And like I was still like really bad with Nitos back then. That's right. But you've gotten better, yeah, right, as time went on.

SPEAKER_01 6:43

Yeah, because now I'm good. Okay. I've talked about your pulmonary function tests in that glass booth. Can you tell people what that actually looks like from your side? Because I've always talked about it from seeing you, but when you're in there, can you talk about what it's like sitting there and all the things that they make you do?

SPEAKER_00 6:59

So like like you just want me to like tell them like, okay. Um so like you uh like you walk in to the book to the thing. Well, and it depends on what test you're doing. So sometimes they close it, sometimes they leave it open. So let's talk about the regular ones, the ones we do most of the time. The regular ones. So you just go sit, they give you some nose plugs, and then you breathe into this thing like this. It's like a microphone. It looks like a microphone. Yeah, it's like a microphone, but like you put your mouth, like you like, like bite it basically. You bite it, like not a lot, but like oh softly, and then you just blow it. You'll take a deep breath. Like the deepest breath you have. And you like blow like like like that, and you like blow as for as long as you can. And you get to pick a game, like there's like uh there's like a balloon, there's chickens, there's a cake, there's like all that stuff. Okay, yeah.

SPEAKER_01 7:50

Was it annoying?

SPEAKER_00 7:51

Nah.

SPEAKER_01 7:52

No? No, it was pretty chill. Do you think it was hard? Oh, like when I was sick, yeah. And now it's easy. Did you ever get dizzy because you're pushing out so much air and taking deep breaths?

SPEAKER_00 8:02

Yeah, it still happens.

SPEAKER_01 8:03

Okay. Okay. Um, one thing people may not understand unless they live it, is how strange it is to be waiting for something this big, but also still trying to be a kid. Did you ever feel scared while you were waiting? Or were you mostly just trying to get through each day? Yeah, like I was just trying to get through each day. You weren't scared?

SPEAKER_00 8:24

No. Up until when? When they rolled you out? Yeah. Do you remember that part? Yeah. Well, like, not really. Because I don't remember, like, I don't even remember a lot of stuff like before that.

SPEAKER_01 8:34

Cause like, yeah. So the one hour rule when we had to live close to Houston, did that ever make you nervous when I said, hey, we're moving to Houston for an unbanounced.

SPEAKER_00 8:43

Unknown amount of time.

SPEAKER_01 8:44

Yeah.

SPEAKER_00 8:44

Yeah. Did that ever make you nervous? Um, not really. Because like we everything's basically within an hour. Like the hospital is just normal. All the stuff we would do, like all the attractions and shows and stuff we would go to was in an hour.

SPEAKER_01 8:57

So we kept pretty busy. Yeah. Okay. Um, did you ever feel like your life was on pause? Did we ever stop? Did I ever make you feel like you couldn't do anything?

SPEAKER_00 9:07

Oh, yeah, like we couldn't do like certain stuff.

SPEAKER_01 9:09

Like Okay, see, and from my perspective as a mom, I we did everything. We went to lots of stuff. We rode rides, we still did things.

SPEAKER_00 9:17

Yeah, like we did a lot of stuff. And I we did a lot of like attractions.

SPEAKER_01 9:21

We tried to keep you busy.

SPEAKER_00 9:22

Yeah, like we did things. Like, that was only when like family would come. Well, we like we did some stuff. Like we went to eat uh Auntie Brooke and Uncle James and Mason and lots of random people, a lot do it.

SPEAKER_01 9:36

And no, we had some transplant friends that happened to live there.

SPEAKER_00 9:39

Oh, yeah, Collins. She lived the uh the one right down from us, or not what's the other not neighborhood like so we made some friends, kind of thing, yeah. And there was like that one dude that lived next to us, and all the people on our like Anaya and everybody, Anaya and uh Wyatt and all those people.

SPEAKER_01 9:55

That's right. And we met some really cool people along the way, like Thomas and his mom Victoria. Yeah, we met them, yeah, and throughout this whole experience, I mean, did you ever feel like you were missing out? Like, what do you mean? On life, do you ever feel like you were missing out?

SPEAKER_00 10:11

Oh yeah, because like like dad, he would call me, like, run you out, the white house, and I would cry.

SPEAKER_01 10:17

Because you weren't there? Yeah. Okay, but now is it better because now you get to do these things? Yeah, but yeah, it was good. So it was frustrating. Yeah. And you but you got excited when you would hear that we were gonna do something fun, right?

SPEAKER_00 10:31

Yeah, like when we went to Sulumu or like when we went to Galveston with Collins that one time. Okay. Or the uh multiple times, or like when we did uh like when me and like when dad took me to the um uh the illusion museum and like this interactive zoo and the zoo and so it was fun.

SPEAKER_01 10:46

We were keeping you busy. Yeah, okay, and this whole time you were on oxygen in a wheelchair.

SPEAKER_00 10:50

Yeah.

SPEAKER_01 10:51

So let's talk about when the call finally came. We've been there about six months. Do you remember what happened that day?

SPEAKER_00 11:00

When the call came, when I got the call that said Oh, so you woke me up and it was like the day after Father's Day, and um you had woken me up and it was super early. And you go, Rider, rider, rider, you got lungs, you got lungs. And me still like I wasn't even half asleep, I was still fully asleep. I sat up and like I was like, What? I go and then I try to go back to sleep, but then I rolled out, and then um, yeah, you took me to my spot and I was like, Oh yeah, and everybody was hugging me and stuff, and everyone was crying except for me. And um, yeah, and but and then you did the thing where you she went into every single room, like she like went into her room, into the guest bedroom, into the bathroom, and then just did that for like an hour.

SPEAKER_01 11:46

Yeah. Okay. Like goofy. When we got to the hospital, did it feel really rushed? Were they like, okay, let's get tests and run.

SPEAKER_00 11:53

No, it was super slow. Like we went to the check-in reception type thing, and then we just sat, we sat there, and then dad got dad came and Walla came like a couple hours later, and he got me Popeyes, and that's right. I was eating. That was jury.

SPEAKER_01 12:07

You're eating right up until they said you couldn't.

SPEAKER_00 12:09

I was literally eating, like I was just down, I was so hungry. And like, yeah, we were sitting there. It was like they didn't really do a lot, but they did like it didn't feel like you were getting a transplant. Yeah, it felt like a normal like admission type thing.

SPEAKER_01 12:20

Yeah, yeah. So you met so many doctors and nurses, and you had people around you all the time. What we had a team here at Children's Dallas that we loved, and then we had to have a new team at Texas Children's. What what made you feel safe or that you could trust them?

SPEAKER_00 12:36

Uh they're like relatable and like they know me, and like after knowing me for six months, well, now two years, but they've known me for two years, like they knew like my personality, like all this stuff, like how I hated Houston and all that stuff. It was hard. It's different. Yeah.

SPEAKER_01 12:51

Okay. And the hospital's different, everything about it was different. So we had to learn the first time going there. It's big and we had to walk around, and there's like seven different elevators, and the names of the all the buildings and all the have different names.

SPEAKER_00 13:03

Yeah, all the buildings have different names, and there's so many bridges and connections and areas and new things, and everything is always getting moved or built, and and there's so much stuff happening.

SPEAKER_01 13:12

Yeah, but we had a favorite, we liked the we we our tower that we had to stay in after Pullmanology. That was a hard one because it was older. It's an older tower. So it's called the West Tower, but it's a saying in between um a lot of pulmonology friends over there that they call it the worst tower. It's just not updated.

SPEAKER_00 13:30

Yeah, it's so old. It looks like from the 1950s. Like a lot of more modern hospitals have like uh the way more updated. Yeah, they have like actual showers. This one, it was like a bathtub, like you had to step in. And like I couldn't like move really, like after transfer. Didn't someone have to come help you? Yeah, like people would have to like help me in, like, and it was just so dumb. And like everything was painted weird.

SPEAKER_01 13:49

It's just it was older, but yeah, uh we our team was always there, so it was good. And we could even leave and go get food, and they have what's they have a Chick-fil-A.

SPEAKER_00 13:57

Yeah, they have a Chick-fil-A, they have like a subway, yeah, and they have one restaurant that always changes, like sometimes it's Mediterranean, sometimes it's Italian, sometimes yeah.

SPEAKER_01 14:06

Okay, um do you remember waking up from transplant? Nope. At all. You remember if I didn't if I show you the video, you'll remember, like, but you ever look at it?

SPEAKER_00 14:17

I just no from the video.

SPEAKER_01 14:18

Just from the video? Yeah. When okay, but you don't remember taking that first deep breath. You were so out of it. So I don't you remember it hurting? No, no, okay. Well, that's good to know. Um, did it feel different right away when you f when you realized that you got lungs and you were awake and we started making you move? Did it feel different not having oxygen? I don't remember. You don't remember any of that. Okay, so very hard to explain when you don't remember things, okay. As of right now, do you feel that your life has changed for the better? Um yeah, okay, because walking, talking, standing, breathing. I can walk, I can talk, I can run, I can jump, I can jog. You can do all the things you couldn't before.

unknown 14:58

Yeah.

SPEAKER_01 15:00

And that makes you are you glad? Uh yeah. Okay. What's something you can do now that was really hard before transplant? I know I have mine that I was looking forward to for you.

SPEAKER_00 15:13

Oh, like walking, like walking, brushing my teeth, like running, like little things, jumping, going to school, walking your backpackers, yeah. Okay, carrying my backpack, like stuff like that.

SPEAKER_01 15:24

Okay. Do you think going through all of this has changed you? Uh yeah. In what way can you give me like to make you stronger, braver, or patient, ready to live? Those are the things I describe you as. Like, I think like I don't think it made you more patient, for sure. I don't think that did that. Uh-uh. Okay, so do you think it made you stronger?

SPEAKER_00 15:48

Uh, mostly like I got over my fear of needles like way more, like I'm not as scared of them as stuff. Okay. Yeah. Okay.

SPEAKER_01 15:57

One of the reasons I started this was because I wanted other families to feel less alone. So I want to ask you something really important. If another kid is listening right now, and some of them are, do you and they're scared about transplant or they're waiting or they're going through a really hard medical thing. Yeah. What do you want to tell them about going through this, about being you were sick your whole life, right? You have friends like Collins and Jade, and it this disease sprung up on them. It was they had lived normal lives, but you didn't. So for kids that have been sick for a really long time, and then all of a sudden they're not anymore, what do you what do you want to tell people? Um that I don't be scared. Okay. Is it worth it?

SPEAKER_00 16:49

Yes. Okay. Most of the time. Okay, because why? Be honest. Like you can run, you can jump and stuff and like breathe.

SPEAKER_01 16:57

But what what you can have. But what's so hard? Is it the restrictions that we put on you?

SPEAKER_00 17:02

Because you can't have any pets, you can't have any bird you can't have anything exotic, you can't have any birds, you can't uh you can't eat certain foods or certain flavors of things, you can't drink so much.

SPEAKER_01 17:11

So you do you ever miss you grapefruit? I've never heard you say anything. So that's something you can never have, but it's not. But like there's or star fruit.

SPEAKER_00 17:19

Yeah, but I remember.

SPEAKER_01 17:20

Okay, so those things, but you're still can't have sushi.

SPEAKER_00 17:22

But I can, but like I can't have like actual shoes, like actual sushi, like raw.

SPEAKER_01 17:28

You like shaggy dogs, though.

SPEAKER_00 17:29

Yeah, we have shaggy dogs.

SPEAKER_01 17:30

So it's a fried temper. Okay. So your for everybody listening, there's limitations. We have friends that have animals and they have dogs, and we get that. They that's normal. You just have to be really safe. Yeah. But you you want like a bird.

SPEAKER_00 17:43

Yeah, I want a bird when I'm older. And I but I can't have a cat. Well, I'm not gonna I don't have any interest in getting a cat, but um you're just sad because we put all these restrictions.

SPEAKER_01 17:51

Yeah, lakes can't go in fresh water.

SPEAKER_00 17:53

I can't swim at all. Like I'm not supposed to, but you could swim.

SPEAKER_01 17:57

No, let's I can swim.

SPEAKER_00 17:58

Okay. You can swim in not in like lakes and stuff.

SPEAKER_01 18:02

Yeah, you can't swim in anything fresh because of the bacteria and the pseudonymous that could live there, right? Okay. So it's just hard because we put all these restrictions on you. So, yes, that's worth it, but you have to be very cautious.

SPEAKER_00 18:13

Yeah, so if you want a pet like that, just don't get the transplant.

SPEAKER_01 18:17

So or get the transplant and then maybe pet the pet and then clean your hands.

SPEAKER_00 18:21

Yeah, well, yeah.

SPEAKER_01 18:23

Okay. Okay, if there's a mom listening, so if you're here and you're gonna talk to Jan or Amanda or another mom and Victoria's listening, what do you want to tell some of the moms about going through this? Like what do you a piece of advice for the moms for me, for your moms listening?

SPEAKER_00 18:44

Uh like you're like strong as stuff. Oh, yeah, okay. Like you gotta deal with all that like stuff. Like you gotta deal with like I like you gotta deal with like trying to like have your kid to be like happy and stuff while still doing like stuff like that. Like you have to like have make have them be happy and have them have like a nor try sort of normal life while dealing with stuff like um like IVs and blood draws and procedures and surgeries and all that stuff.

SPEAKER_01 19:15

Okay, writer. I'm really glad you came today and you sat here with me. Yeah. You've listened to these episodes, you've corrected my mom mistakes, and today you got to tell your side of the story in your own voice. And honestly, that matters more than anything I could say on my own. So thank you for setting the record straight. Thank you for sharing your heart, and thank you for being the reason this podcast exists in the first place. Before we go, is there anything else you want to say to kids or families who might be listening and going through something hard too? No. Okay. I hope today gave people something they do not always get to hear. Not just the transplant mom version, but the transplant kid version too. For all the families listening, I hope this episode reminds you that your child's voice matters. Their memories matter, and even the little details they correct you on matter too. Sometimes those mom mistakes are actually part of the story because they remind us that we are living this in real time, doing our best and loving our kids through every part of it. Ryder has worked hard for every breath, every recovery, every step forward, and every part of the story. And getting to hear him tell even a piece of it for himself is something I'll always be grateful for. This is Courtney. And I'm really glad you're here. Bye bye.