Five Lives Saved: A Mother's Story of Loss, Organ Donation, and Hope (Bacterial Meningitis)

0:00 Hello, my friends. I'm so happy to be with you today, and I cannot wait to share my conversation with you. Today I interview Kristen. Her son, Rylen, died from bacterial meningitis almost nine years ago to when we were recording this. And we started this podcast around this time, nine years ago exactly. And there are just so many little signs that she actually refers to as Rylen Winks, Which is kind of a play on Godwinks and just these little signs that keep showing up for her that Rylen is still very much here, very much present, and so proud of what his mom is doing. Kristen takes us back to the time when Rylen was diagnosed with bacterial meningitis and what their week and a half children's hospital stay was like, what it was like when people were visiting, what it was like when she had to walk out to her car without Rylen being there.

0:54 And what they're doing now in terms of the Smilin' Rylen Foundation and how they're continuing to support families in honoring Rylen and organ donation and helping pay for families parking at children's hospitals. That this is absolutely a conversation that is worth listening to. And I hope that you go and share it with another parent who is maybe navigating loss, or maybe another parent who is thinking about starting an organization or foundation and is scared to do it. Or a hospital worker who is questioning how important their role is for families at the end of a child's life. Thank you so much for being here. Let's go ahead and get started with our conversation. Well, Kristen, why don't you start off just by introducing a little bit about who you are and about you, Kristen?

1:38 ~ so my name is Kristen Cowan and I grew up in Sugarland and ~ I have a wonderful mom and dad who are play a major support system in my life. ~ I have an identical twin sister. Her name is Jamie and she's my best friend. And Travis and I actually grew up together. we're coming up on an anniversary, maybe 18 years. We've known each other since we were 10. and I was telling you I graduated from the University of Texas, Austin, and ~ I'm a teacher.

2:18 I teach third grade. I just finished my 20th year of teaching, and I do love it. I love summers too. But so we just finished summer, ~ we probably just finished the school year. Two weeks ago and we're into summer. So I'm super excited to take it all in and relax a little bit and decompress. because the year is super, super ~ busy for my family. So we have a dog named Colby, he's sixteen, he's a really old dog. I he's been around prior to both the boys, and then I have Corbin, he is twelve and he is going into seventh grade.

3:02 And then Rylen, who would be going into fifth grade. So, and my husband Travis, he flies for Southwest out of Houston. And I there's two airports and I can't remember. I think it's Hobby he flies out of. Yeah. You're like I can't ~ I can't keep track. It's the same distance from the house anyway. So I'm like, one airport or the other. One is smaller, well, not as crazy. I think. Like it you walk in and I'm like, what it I don't go to the airport without I I personally don't like the airport. I don't mind flying. I just don't like all this stuff, like parking and yeah. It's it's yeah. It's so draining.

3:43 it's not comparable to a hospital, but it could be close to second. So Yeah. So is there a version of yourself? So my very good friend is a teacher and she says there's like a there's a school year Lindsay and then there's a summer Lindsay and summer Lindsay is way Absolutely. chiller, more fun, watches shows. Yeah. I think I'm just during the school year, it's just I'm very focused on that, but I also balance the the foundation on top of that. So it just No. feels very busy ~ to be balancing both family, child, work and the foundation. And with ~ us being outside of the school year, it allows for me to kind of just focus on that.

4:29 But I also feel like this is when our our time slows down. So ~ we started the Smilin' Rylen Foundation, which is funny that you mentioned nine years ago, because we're actually coming up. This Friday will be Rylen's. I call it Angel Versary. I don't know what other mothers call the anniversary of their child's loss, but I call it Angel Versary. So we're coming up on nine years. So I lost Rylen ~ June 5th of 2017 and Rylen was thirteen months old and he just woke up with ~ a virus, just fever. and the I went to work.

5:14 and my mother-in-law, because Travis was flying, ~ she was wonderful. She she was there along the way when w when the boys were little and helped take care. She at one point stayed with us and but then you know was in a an apartment close by. And I said, Hey, I I I'm gonna go to s to work with Corbin and if you could just like take him in instead of taking him to the daycare and see if he's okay, he had a fever. And then Travis was on his way back from a flight. And so Travis took him in and ~ my mother in law, Tina, ~ took him in and he had a fever. She just said, you know, it was just a virus, let it take its course. And I was like, Okay, well, knowing it was a virus, I didn't wanna get my other son Corbin, who is three and a half at the time. ~ I didn't want him to get sick.

6:02 So she's like, I'll just keep him at the apartment. That way the boys are separate. They're not gonna get sick from each other. I was like, okay, perfect. but the doctor said like, you know, keep him hydrated. If he doesn't have any like movements or whatever, then you know, I'd be more concerned. And I was like, okay. So this was a birthday weekend celebration for us because my twin sister and I our birthday is May 10th. Which sometimes falls on Mother's Day. And ~ but you can get a Kendra Scott piece of jewelry, ~ Yeah. half price. So I was like, let's go, you know, and my sister had actually never been to Kendra and I was like, What? Let's go, let's go. So we had set a date.

6:42 So everything happened that was a Friday, and now we're in a Saturday. And Jamie and my Jamie and I had already planned to go to the mall to an outlet area to get Kendra Scott. So we're there. And she, my mother-in-law calls me and was like, you know, I'm I'm kind of a little bit more concerned. He's very lethargic. And I was like, like lethargic, like one. She's like kind of like a rag doll. And I was like, what? And I was like, I'm coming. I'm on my way right now. So we'd already we made our purchase and off I go. So I'm coming to her apartment. ~ and I think at this point, Travis is home. So he's coming to meet me.

7:23 At her apartment, and we kind of do a switcheroo. I take Rylen and I'm with now with Travis, and Tina takes Corbin and now she goes back to our house. So it's kind of just this old switcheroo. But like literally, if you picked him up, it was like he was like it was almost like this, like just a lip, like Yeah. just limp. He didn't want to be held, he didn't want to be touched. And I was like, Okay, we're definitely going to the ER. So like she lived in apartments here. Here's the highway. And then the hospital literally is like right across the street and Katie. And the hospital, they just pushed flu fluids. They just thought he was like dehydrated. And I was like, okay, but like if you are you gonna like do a needle into a kid and they're like didn't flinch, didn't anything. And I was like, Okay, that's kind of weird.

8:13 Like not, you know, I'm sure he's whining and stuff, but like didn't flinch. So they I think they ended up pushing like two rounds of fluids and he never like they just they they they did draw blood okay and I think at that time they're doing what's called a culture and like everything's still kind of foggy foggy in my head because it's Yeah. like nine years ago and then they just said like that they wanted to keep him overnight. They weren't sure and the I think they said that the cultures were foggy, I believe is what they were telling us. I'm like ~ okay I had Travis stay with him. And so this is a it's called Children's Memorial Herman Hospital, but we're in Katy. ~ Okay.

8:59 there's a Katy location. So like I went home that night to stay with Corbin and Travis spent the night at the hotel. ~ at the hospital, and he was like, that was the worst night ever. He moaned all night long. And I was like, and did they give him anything? And they're like, we could only give him like children's Motrin. That was like the strongest thing they could give him. And I was like, Okay, I'm asking for them to send us down to the med center because they clearly need to give us ~ him more medical attention. Yeah. And so the doctor was like, I actually want to do a lumbar tap, I believe it's called. And ~ she was like, ~ but I haven't done one in like 13 years.

9:41 So we're gonna go ahead and send you down to the medical center. And I was like, I'm so glad you said that because I was gonna suggest that because I think he needs more than what y'all can get him. So Yeah. I guess at this point the results from the blood work were showing that he had meningitis or what they presume to be meningitis. I don't know what meningitis is, you know, and sometimes it's still a little foggy for me now. I I just chose not to research it. But I guess it's something to do like at the base of your brain. And you know it was it was so crazy at that point because like I think word had even gone now. ~ like in our daycare was so not and it wasn't our daycare, it was the news. They were so insensitive.

10:26 They were like driving up to the daycare, interviewing parents, like there's a meningitis outbreak at the daycare. How do you feel about this as a parent? And What? I'm like, whoa, whoa, whoa. Like it was insane. We had to come up with like a fake name for our child so that if anyone called for him or the news or whatever, we would have this whole thing to like try to like get him like protected, you know. So anyways, I took I always say it was the most expensive ride ever, which is the ambulance down to the med center with Rylen And Travis went back home to like grab like our bags, like pillows and some blankets Mm.

11:07 and some things to suitcase or whatever, toiletries. And he met me up at the hospital. And I just remember they were They were already working on him, like even from the ambulance, they were doing all kinds of stuff. So ~ when we get to the hospital, it's really just a waiting game. The they did confirm that it was bacterial meningitis. So just a little bit of information because I didn't know this either. There's two forms there's bacterial and then there's viral. So viral would be the one that you might be concerned about because it could spread within the daycare, but this was bacterial. It even gone up to the news. I remember I was sitting in the waiting room and I looked up at the news and there's Rylen and they're talking about meningitis.

11:52 What? Yes, it was literally on the news in the little waiting room. ~ and they're talking about how, there's an a case of meningitis at the stake here and blah, blah, blah. And parents, you know, it's spreading. And I'm like, my gosh, people, you do not like at that point, I'm more aware that there's two different forms. I'm like, y'all are misinformed. The news is misinformed. Like Well, and it's like to l I mean, we talk about protected health information and like without permission sharing and how would they even find out? And I this is just so much added stress on top of you already being Right now. as worried as you possibly can be. Yeah. It was crazy. It's like s it's really kind of unreal how the news can, you know, just chase after a storm, a a c a a story, not a storm.

12:36 Right. Yeah. and so they just they went to to work to treating him and ~ we were clear What did that look like when you say like they started working on him? Do you Gosh, okay. So I remember being in a room. I must have been some type of operating room and like they had on a table. And the doctors and the nurses were just like cords and yeah, Hooking them up to stuff, yeah. and yeah, all kinds of cords, all kinds of polym medicines. And I just remember standing in the corner, like losing it. I was like standing there crying, and I was like, in my brain, I was like, Is this really is this really happening?

13:20 Like how is this like like you're it's almost like an out of body experience, you know, because you're just like standing there and I I just I do remember praying a lot. Like I'm very thankful for the my faith that my my parents had given me growing up, you know, like hardships we lean on our faith, our hardships we lean on God, hard hardships we lean on Jesus, you know, and so I just remember praying a lot. I think my parents had met me at that point. And I remember like crying into my dad's chest, like standing there. And ~ you know, he just hugged me and I just trusted.

14:00 I trusted the hospital to know how to handle this and to to that he was now that Rylen was now in the best hands and that that we that there are great doctors and nurses. Like I didn't question ~ them at all. I think at one point, ~ I had heard good things about children's, Texas children's, but they don't transfer over hospitals because we had already started at one. And because with the meningitis, it moves so quick, ~ from my understanding that they couldn't like transfer us from one system to the other. But they said that I mean, like everything in the Houston Medical Center, like all right there. So she said they they all work together.

14:41 So it's not gonna be like a big deal if you ~ so we just said, okay, you know, and I remember, you know, after that that moment, we didn't leave. We did not leave the hospital. So this is probably where more of your hospital story stays. Some other moms come in, but mine was short. Mine was short. I remember we had pastors come in and pray, we had family come in and visit, we had church groups come in, our small group, ~ my parents, my sister, ~ aunts, uncles, just everyone would come in.

15:21 They would, you know, we mainly gathered in like just a kind of like a common area where all the people come in and out. And then Rylen would be down this hallway and we would take them to go visit him and then but like I said, we never left. So we would they had where we stayed at Children's Memorial Harmon Hospital, there's a hallway over to the side and it's filled with rooms. So it has like a and it's run by Ronald McDonald House. So they had a kitchen where we could have food and people could bring in food. There's a community refrigerator. You could just put your leftovers there. There was a room for us to stay every night and it had like a like another room next to it. So like you shared like a bathroom and shower kind of thing.

16:06 And I couldn't sleep in the room where he was because of all the machines like beeping. It was a trigger for me. ~ I was in there a lot, but I also like was out a lot. I was talking with people. I would just have to take breaks and I just could not put myself in that room because of the the n the beeping. ~ Makes sense. so like I I don't feel guilty about it, but I do sometimes see other posts like where the parents like in bed with the child or and I don't and I think I had asked for that, but they said that like because of all of his cords and stuff, like I couldn't like be in his bed with him.

16:48 Yeah. Yeah. but it was just nice to rest my brain, you know, take a shower have family bring us food and but mainly we just went kind of back and forth in the wing, you know, like I I I never left And then the parking was kind of a a big story for us too because so in the Houston Medical Center, which I think is terrible, they they make you pay for parking. And ~ I guess I mean, obviously I'm not aware of that. I've never parked in the parking garage before. I don't know what the price is now. I'm gonna say anywhere from twenty, twenty five, thirty dollars a day.

17:31 And I'm like, there are people like me. I didn't know my child was dying, you know. But I'm like, my child's dying, or my child's sick, or you have someone battling cancer or whatever. And I'm just like, this is like the devil. Like, y'all are the devil. Like, and and I learned that they're not connected to the hospital at all. They're like a whole separate entity. So, but we were granted what was called parking passes from an organization called MS Hux. And so there's And later on, we find out there's two, there's two different colors you can get: an orange one or a purple one. And so we had gotten an orange one, ~ which brings significance later on, but the orange one is ~ specific to that hospital.

18:18 and then we just, you know, every day we would wait for CDC to come by and the doctors to come by, and you know, I'm at that point right now. ~ and I do this every year, and I don't know if you talk to mothers that have lost their children or who have survived. Do you talk to a mixture? Yeah. Yeah, we do we have to both. So for me, part of my grief journey is just like reliving it every year. and I try to explain it to my mother and she doesn't understand it. But I think any mother that has lost a child has like goes through this and they understand it because it's part of not forgetting.

19:01 you know, ~ honoring them or some you know, I I I don't know the ex or I I th I think it's part of your grief journey, at least it is for me. ~ Yeah. Great. but anyways I'll come back to all of that later. But basically while we're at the hospital, we you know we're surrounded by prayer and community and support and it's funny because like my husband and I went through the same exact thing but I'm kind of jumping all over the place, but we also grieved very di differently ~ later on. So that was just ~ a challenge that I think that probably happens a lot between husband and wife All right.

19:43 or ~ a family. But ~ there were days or days when Rylen was good, and there were days when he wasn't. And ~ I remember his best day. we wanted Corbin to come up and see him. And I believe it's called a child life specialist. And they come in and they talk to Corbin. Again, he's three and a half at this time and tell him about all the cords and what this one means and what this one means. And so when he came in, he wasn't scared to see that his brothers like hooked up to all these cords. And he was Corbin was even telling us, well, this one means this and this one means that. And ~ I think they painted a he painted a picture with the rainbow. And we just got to visit and Rylen was wonderful.

20:26 that day he was he was he was good. And then the next day, you know, he wasn't. and then the next day he was good. So it's just this up in battle, they said that the regimen that they were giving him, I think was something like twenty three days and we just have to wait and see how his body takes it. I I think they told us like there could be long term effects with ~ you know hearing maybe the brain, ~ developmentally ~ I I guess I couldn't hear any of that or see any of that. I I just always chose to believe my cup is halfway full instead of halfway open.

21:06 I was like, it's gonna be great, he's gonna be fine. And but I do remember at one point I told my mom one night, I was like, ~ I don't think this is gonna be good, mom. Like, I don't think we're leaving this hospital. And of course, my mom that helps uplift me is gonna be fine. We're gonna continue praying. It's gonna be fine. We're this miracle that we're wanting, it's gonna happen. And I remember one the one time he was doing well because they would intubate him, then they would unintubate him, then they would intubate him, then they would it depended on how he was doing because I think they were trying to work with the different machines of giving him air, less air, give him this, give him that, try this, try so they were just depending on how he.

21:51 Body was reacting, and they had taken him off of at that day. I don't know, we're gonna go with like stay seven, maybe eight, Yeah. maybe nine. We're we're we're about nine days in. ~ and I'm holding him. They gave me permission. I mean, and and we got to do wonderful things like bathe him and brush his hair and sing to him and read to him, like all the things we would do as if you know he was running around the house. and they gave me brought up a rocking chair, and they finally said. I mean you can hold him. He's he's so connected to cubes tubes, but he doesn't he's not intubated. And I just remember I was I was holding him and it was the best thing ever and The machines were going off and then everyone ran it.

22:37 And ~ I had to I just had to leave the room. I couldn't be there with everyone on him. And I remember I ran into some stranger and I just started crying on him in the hallway and ends up he was like, What is the church pu the people that pray over you in the hospital? The The chaplain. chaplain. I ran into the chaplain's arms, of course, and it was just the person that needed to catch me at that time and He just prayed over me in that moment. I fully believe now looking back that that was when Rylen left his body, when his Yeah. soul left his body. ~ at that time I didn't, you know, I just knew that things weren't good, you know. and then of course they're gonna reinhabate him and do all of that.

23:24 So he's also hooked up to machines and Travis. had come to me at one point, because you have to understand, like we were in the same place doing the same thing, but we were not that we would miss each other, but it was like, ~ he'd take a phone call or I'm looking at Facebook. I'm sitting, like we were, we were experiencing the same thing, but we had two completely different experiences, even though we're going through the same thing. And the he came up to me and he said, Ha what what are your thoughts on ~ organ donation? if you know that were to happen. I was like, it's not gonna happen. But if that's the case, yes, of course, yes. ~ we had grown up with I talk with my hands, I'm sorry. So my my mom and her so Grammy, her mother, had a ~ roommate at the time.

24:18 And they the the roommate's son and his wife, they were organ donors because the wife gave the husband one of her kidneys so that he could live. So we were already ~ exposed to organ donation. That was living organ donation, but we were exposed to organ donation. So I wasn't obviously against it. I don't think I knew a lot about it, but I was like, yeah, absolutely. You know, if that's the case. So when they came to us and they do a test. I guess basically his body had even done things like had non septic. Okay, was better. Then it went into a seizure. And then it basically that's when it just didn't recover.

25:02 So he's on life support at this time, I guess. And they have to run two tests to confirm, one from this doctor's office and one from another outside source to confirm what exactly if his body would live if they took the life support off. And if you get two negatives, then that confirms that basically they're brain dead. And ~ I remember the doctor talking to us, trying to keep us, you know, as without crying, and the nurse in the background crying too, you know, just as they're having to share this this terrible news with us that they've done the test twice and there's no brain activity, which means, you know, he his he's physically, you know, not going to make it, you know? And so from then on we just went with organ donation of obviously, and we want someone else to live with, you know, whatever he can provide, you know. So it was hard.

26:09 It's hard to almost go back to that. But again, it's it's part of me to relive those those moments, whether they're Corbin visiting or Yeah. and the hardships of even those moments of when like I feel like in my heart when he actually passed, you know. So Right. yeah. It it was is is hard to drive home. I was thinking about that this morning. It's hard to drive home with a car seat in the back of your car that's supposed to hold your child, and to come home to an empty crib that's supposed to hold your child and the handprints that were on the window and The maids wiped it down a week later and almost lost my mind over that.

26:55 But you know, you just put one foot in front of the other, you get out of bed you pray harder. And the thing is that miracle that I wanted so bad for Rylen was really the miracle of gift of life that he was able to provide for ~ five other families. So he donated his heart, his liver, his kidneys. You have two, you have to remember I always say, you have two knees, that's how you know you have two kidneys and his intestine. So those were his gifts that he was able to provide for five other individuals.

27:38 So I knew immediately when we were in our grief process and looking, you know, even like in the in the like weird stages of like planning the celebration of life and looking for a plot. Like who does that? Like those kinds of things that I knew in my heart that I wanted to figure out a way to give back to the families or any family that might be going through something like what we went through. Anything similar. And I it's it's kind of crazy because I didn't know that we were getting serviced by all these beautiful organizations at the time.

28:19 That we were getting service. For example, I didn't know that okay, life gift, right? That does organ donation. Ronald McDonald House, they housed us. ~ Emma's Hugs, which did the parking passes. We went through a grief program outside of ~ in Houston is downtown. it's called Bowes Place that provided free grief groups for families. We went through their program and then ~ Also, we had a family friend that worked at the time. They volunteered with Now I Lay Me Down to Sleep. I don't know if you've heard of them, but they come in and they do rem we call it remembrance photography. And so she had come in. And normally it's for babies that are born and never leave the hospital. But since we had that connection, she came in and took those pictures for us.

29:08 And we have a beautiful photo album and a beautiful photo of all of our hands, you know, embraced in each other. And I just knew I was like, I I wanna do something. I have to do something. So once we were able to maybe think a little bit clearer or maybe not be able to think clearer, I was like, we're doing this, it's happening. I just told my girlfriends, I was like, we're we're starting a foundation. We have to. And so ~ we started and we filled out the paperwork. And I've heard that it takes up to a year to get established. And our paperwork was done in two months, pft less than two months. I have and I'm just like Rylen, like seriously, like okay, this is happening, you know. And you know, we have another family, so we're on this side and we have another family that lives over here, and they do an annual run to honor their son, Graham, and it's called the Graham's run.

30:04 And ~ their son died from congenital heart failure, so they raised funds for the Heart Foundation. ~ in his honor. And I was like, you know, she can do a run. Maybe I could do a run. Not that I run, but I Yeah. could do a run to help raise funds. So we went through the process and we hired ~ found a company that would help us from ground one, website and, you know, all of those things. And we had a run, so Frielin was June, ~ the following ~ summer is when we had our first ~ Smilin' Rylen run. And that's how we raise our funds to give back to the five organizations that I just got finished bragging about.

30:48 So and that's how that all fell in our lap, you know. So So you now give back through Smilin' Rylen to all the organizations that supported you during that time. Yes, yes, ma'am. Yes, ma'am. I wanna I want people to know about the organization. Some are bigger. I mean, obviously you probably heard of LifeGift, you probably heard of Ronald McDonald House, but I want people to know about even the smaller ones that are important to know about, you know, especially if you're on a like grief journey. ~ so I I always talk about all of the organizations that could be of a resource that could be a resource that were a resource to us.

31:29 And it's just crazy because they were all happening. And I had no idea. And I wanted to take us a step back because I had questions. And I don't know if this mother that you talked to back nine years ago knew why. Why us? Why my child. And I think mothers that maybe have lost a children that child depending on the circumstance want to know like more and I don't full I didn't fully understand why Rylen had bacterial meningitis or had gotten the meningitis and that might be a question. And he was thirteen months at the time, Yes, yes. And is that right? Yeah, okay. so my understanding is that children around the age two and then again when you're college maybe can contract or contact contract maybe this meningitis and But the thing was Rylen was up to date with all of his shots.

32:24 So then I was like, How did he get that? Why did he get that? And our immunologists, I guess, had still had some blood work blood work to work with. And we just begged her, I like, Please can you help us find more answers? Like we just wanna know if was there something else that happened? So this was after Rylen died. You guys were kind of After he had died. grappling and saying, like just trying to process because when you're in the moment, Process. No. you can't process like what's happening. You're making life and death decisions all of the time. You're kind of hosting in the hospital, which I know is kind of what it feels like going back and forth with family coming, trying to talk to the doctors. Yes, as a host. That's a great word. You have so much going on. You know. Absolutely. I felt like I was on I went out, it was like it was weird because it's like I'm I'm completely devastated, but at the same time I'm like, here comes my family, right? You know?

33:14 It's so strange. Yes. And it it it's kind of what it feels like. So strange. Yes. so you went back to the immunologist and you said, Can you please just tell us what you found? Yeah. Yeah. So she she was able to determine that basically he didn't have an immune system. And I was like, so that that means like his body didn't fight it off? And she was like, exactly. And I was like, how come I didn't know he didn't have that? You know? ~ how come I Yeah. didn't know he was born with that? There the only thing I you know, he we went straight to daycare and hey, you got hand, foot and mouth. Yeah. Got it all. You got ~ cold, you got a virus, you got, you know, he was constantly sick, but not sick with anything that would have red flagged outside of the norm.

34:01 These are the things that kids get all the time when they're in daycare. And I started to think about it and I was like, Well, if Corbin wasn't in the urgent care, Rylen's in the urgent care. And if Rylen's not injured urgent care, my husband's in the urgent care. Between the three of them, it was like ping, ping, ping, ping, ping. I remember filling out paperwork one day and I was like, I I I don't know who was in here last. Like that's how often I was going with one of them. I know it was crazy. So yes, that makes complete sense that he had an immune deficiency, but that I didn't know about it because nothing red flagged too crazy. So basically, and I try to explain to people, okay, you know how you get sick with a cold?

34:42 And then sometimes that cold can build and trans a snow I call it snowball. And to like maybe now you have bronchitis and now you have pneumonia and now you like it literally snow now you have the flu whatever flu. It just snowballed for him. It started as a virus and basically attacked him and then it turned into pneumonia and then it turned into this and then the and then the meningitis. So like I I don't know the correct scientific of how but that's how I explain it to people because I feel like well if I can understand that, then maybe you could understand Yeah, and it and it makes sense. that. Yeah. And it makes sense. And it's it's one of the words that like people know meningitis, but when you actually get down to it, Right. we don't know a lot about it.

35:24 Exactly. So that's funny that you said that because when you start a foundation, they ask you to come up with a mission. Like what do you plan to do with your foundation? So I'm like smiling Rylen because Rylen was always smiling and that's actually how I introduced him to people. And I'd be like, His name is Rylen, I was wondering but we call him Smilin' Rylen because he's always smiling, which he always was. And so when you're thinking about your mission, I knew what I wanted to do. I knew An idea of how I wanted to get the funds. But then it was like, what is our purpose? Like, what do you want to do? And you're like, I can just inform people about meningitis, bacterial meningitis, spiral meningitis.

36:06 People don't care about that. I mean they do, but it's not something that's global or something that's impactful, you know? So I was like, well, Rylen did organ donation. What Yeah. a beautiful gift that gives us such an a platform. to reach to everyone. Everyone could be an organ donor. And if you're not, you need to become one. Right. Right. So that became our mission to assist families in crisis, which is pretty broad, and to raise awareness about organ donation. And so I love that Rylen is a face of that. He's 13 months old, which means age doesn't matter. You know, like you can still I was his voice.

36:50 Of saying yes, because obviously he was too young, but you can make that decision and you can help save lives. And I oddly believe like he's living on through others, you know. So as devastating as I was that I lost him. And I know his soul's beauty. I mean, like when you see the final picture of him, it's just a temple, you know, when that that's that moment when you realize. God was like playing so many intricate pieces. I could see where everyone had been woven into my life since I was little and how he brought us all together in that moment. And and my world, it was insane during that moment, that those weeks, that week, that short week and a half that we were there.

37:33 Like, I I don't know. I feel like I saw things through like. what God intends for humans to see, but we can't see because we're so blinded by everything else going around us. And in that moment I could see I could see the that cardinal over there. And I could see the orange here and I could see the like it was just everything like he opens your eyes in such a different way. It's it's such a beautiful map. And it's I think it's just that glimpse into like heaven. So if you were like wondering if heaven was real, no, it is, you know, it just really takes all your doubt away in that moment. But I also think fully that again back to my parents and their foundation of faith 'cause I know people don't go in that direction and it breaks my heart when you're going through such turmoil tragedy to not lean on your faith.

38:19 Like how can you get through that? You know? So I just I'm I'm s I'm I feel grateful for that being part of our story too, you know. have to know about the orange sticker too. Yeah, yeah. So the Because did you see what color I'm wearing today? Yeah, I I do notice that now. I love it. So yeah, the orange, the orange is really the orange parking pass and how that played a role in everything. And at the time, again, it's one of those God winks, maybe people might say I've turned it into what's called a Rylen wink. But I don't know why people would ask us, like, what is Rylen's favorite color? I don't know, is because they wanted to make us something or gift us with something?

39:02 I mean, he clearly he has teeth, I think, were just like starting to come in, but it didn't stop him from eating, you know, like he loved food. And I'm like, when I remember one time they were doing an extra. I was like, does he have teeth in there? Can y'all see if he has teeth? And they're Yeah, they're coming. I was Okay, good, thank you. I just wanted to confirm. But ~ I he he he wasn't old enough to even like he could say a few words, you know, but he wasn't like saying a full sentence or a conversation. So like, how am I supposed to know what his favorite color is, you know? And I think mom was kind of in that stage of like, What's a sign? And we gotta decorate and how are we gonna sell you know, do a celebration? She was just kind of, you know, if you know my mom, you would love her.

39:43 Everyone loves my mom, but she's a lot, you know. And I was like, Mom, it will come to me. when it comes to me, like whatever the sign is, whatever the color is, whatever, it will come. And so we were like looking at pictures as we're going through planning the celebration of life. And we would catch him in orange, right? And some of these pictures and we'll be like, man, I like that orange. You know, and we go through, ~ there's another orange. He's in orange again. Look, do you see the orange there? And then all of a sudden it was like, I I think orange is his sign, is his sign is his It's his color. It's his it has to be his favorite color. Number one, it's bright, it's cheery, it's joyful, it makes you smile, right?

40:26 Yeah. And you see it in the sunrise, you see it in the sunset, you see it in butterflies. And and next thing you know, it's like my eyes again have been transformed. I see orange everywhere. I've like I I stop and I'm like, we went, you know, out of town. And I look at that little orange teacup, or look at that boy, he's wearing an orange jacket, you know, and it's just like it catches my eyes. And then I'm like, my gosh, Jamie. Twin sister. We parked on a parking garage level. It's like the orange level. The wing we were in was the orange level at the hospital. ~ the orange parking pass. You know, everything was like, ~ you know, it's just orange, you know, and that definitely inspired us when we were building the logo for our ~ foundation, an orange heart, the green ribbon to represent life gift.

41:15 And the angel wings. So that's why how we tr how we fell upon orange. And ~ I I truly believe that that's his favorite color. So now everything I mean, it's pretty I like is is orange. went into my closet to take off what I was wearing before because I knew we were gonna be on video. Yeah. And like this orange shirt, I'm not kidding, called to me. So like that is a Rylen Yay! wink for sure. And like Yeah. I was just telling you, I don't think we were recording yet, but like a mom with meningitis of a child with meningitis nine years ago, That's crazy. And you said nine years ago too, which is insane to me. Yeah. which is the other weird thing that just to connect is that.

41:55 I had viral meningitis nine years ago. So I'd started the podcast and then I You have firewoman and Judas? yeah, when I was pregnant with my daughter. Yeah. Really? And ~ it's so it it is surreal. It's the Rylen winks that are just like Yeah connecting us. One of my so Smilin' Rylen, what are the ways that people can give back to Smilin' Rylen? Yeah, so ~ well before I touch on that, Yeah, sure. ~ the or like I said, the organizations that we give back to are obviously impactful to our family and I know could and do supply a lot of resources and help and aid to families that are going through ~ possibly something similar like us. Like that is our main purpose too, to to assist these families.

42:48 But one of our programs that we get back to is called Emma's Hugs and it's a parking pass program. Like I said, you don't need to be paying for parking. We were blessed with two, by the way, when we were there. That's not a normal thing, I don't think. ~ I think Yeah. our social worker had a a a a thing for us and Rylen and because he's just so cute. I can see why, Mylin Mylan, give them all the parking passes. And so the the second parking pass, they tell you if you run out before you finish your state. Your job is to give it to the next family over. And so, and I'm I'm telling you, I had these Godwinks all the time. I could talk to you probably for hours of all of these things. But ~ we went to go give it back to the family that moved into our room when we left. and it was a little girl, I believe, who had survived a drowning accident.

43:41 The dad is a pilot for the company that Travis flew for at the time. I'm just like, stop it. This is unreal. So we give them our parking pass. And once we had our first race, they came to our first race. And I'm just like, this, like, seriously, stop it. Like it was just these things that happen. I I can't make them up. That's how No. I know when someone says, Is heaven real? Yes, it has to be. That's where my What? son is. That's where I want to be one day eternally. So fast forward, we've been giving back. To all of these organizations. We're on year nine. We just finished year nine. We just concluded from our race $50,770 from this race alone, which helps You're amazing.

44:26 us to come to a grand total of giving back to families over $400,000 Wow. over the past ~ nine years. And again, they go to the various organizations that I shared with you. MS Hugs, two years ago. They came to us and they're like, So we're gonna close our doors. And I was like, ~ okay. But you can't. You you can't. Like, do y'all know how many families y'all like take care of? Like y'all can't. And they're like, Well, that's why we're coming to you guys, because we want to know if you'll consider like taking it on. And I'm like, Yes. Like I I I I'm sure there's a thousand questions and things that go with that, but yes, like yes, yes.

45:09 So we had a couple meetings back and forth, like how do y'all run this? What do y'all do? How do y'all do it? You know, ~ who does it go to? How you know, how many are y'all giving out? Like what lots of questions. So we took over in this October of 2024. So we're coming up on almost two years of running the program. We've we've renamed it Smilein's Rylen Parking Passes. But obviously we talk about MS Hugs still. We love them, we love what they do, we love what they did. And We've been running the program and it's just amazing. It's amazing what they gave us like whatever funds they had left and now we're running on our own.

45:54 that's why our fundraisers are so important to us. That's why the races, that's why don't just general donations are so important to us, because I I cannot let this program not j-just go. Like it there's I just know firsthand. The impact of that and did not have to think about parking at all. It did not have to worry about that at all. So basically, it provides a week's worth of parking for family. They can go in and out. If you don't finish it all we are any of it, we ask that you hand it over to another family. And so there's two parking passes, a purple one and an orange one.

46:38 the orange parking passes cover MD Anderson, Children's Memorial, Herman, and Methodist, where the purple one covers Texas Children's, St. Luke's, and it says TCH Pavilion for Women. So ~ we started giving buying 60 passes per quarter. So Wow. quarters are three months, and it's $6,000. six thousand dollars every three months to buy sixty to buy the the parking passes and then to do that again the next three months and then to do it again the next three months and the next three months so within a year you're spending six twelve twenty four thousand dollars and that's how I had met Lindsay because she was here and she applied applied for a parking pass permit and I I believe Every once in a while I'll just find someone and I'll just call them on the list.

47:36 I'm like, I need to talk to you. Like, I just want to tell you about us. And we just like connected. It was the most magical meeting I'm sure ever. And she was just lovely. I had found her on Facebook and I was, you know, her sweet son and organ donation. I think he's a recipient. And I mean, that's how the whole story got started with the parking passes. ~ and she's like, I'd like to invite you. And I was like, Yes, please. Right. But ~ Where people and and you know that I want to tell you something. We we are blowing through the 60 passes. That's not how it started. We would have leftovers and we'd roll it over into the next quarter and have some leftovers and roll into next.

48:19 We ran out of our 60 passes in a month and a half this time, this quarter, which shows me that we're growing. We had budgeted for that. And I'm we just started the month of June. And I am going to have to tell people no for the entire month of Jump June. And my heart is like breaking. Yeah. But as we go into the next quarter, we've looked at our finances and we're gonna up it from 60 passes to 80 passes. So Wow. again, you ask why are the donations, where are the donations? How do you donate? Why are they important for us? ~ Even though we take a chunk of the funds from the race, it applies to the next year. Right.

49:06 So we're sitting right here, and I'm trying to figure out how do where what's our bank account look like and how can we take care of the next two quarters because those race funds go into the next year. It's just part of it's like a business in a day. I'm learning. I'm trust me. I'm like, Yeah, sure. this is the balance that we were talking about from the beginning. And We looked and we're gonna up it from sixty passes to eighty passes come July. So I'm just super excited. I know that God has something in store for us to continue this program and it's gonna grow and it has to grow. And I know something is magical is gonna fall on our lap.

49:48 I just pray about it ~ every day. ~ but yes, so we have a website finally answering your question. I'm long-winded, I apologize. But ~ from our actual website, which is and I don't know how to tell it to you any better, and it's I'm terrible. Smilin', like Yeah. so the word smiling without the G. So smiling and then Rylen, and then it's foundation.org. So and then we basically have a couple Okay. We are gonna link it everywhere we can, put it on every show note. How do we get more people to know and share about Smile and Rylen? Yeah. Yeah. We're gonna do that. So we have we have just a general donation button.

50:29 We also have just specifically a parking pass donation button. So like you could pay for just a date. You could pay for a you know limit to days. You could pay for a week's path, which is what we give out to families. and then we have well when the race is open, they'll have a race registration button. Which is always in April because April is Rylen's birthday month, which is four eleven. And what, Wait. My what? my birthday is April eleventh. Stop it! Stop it! See, we were supposed to do this. I know. This is This was supposed to be crazy. So his birthday is April 11th.

51:10 And then we picked the month of April because of his birthday. But it's also organ donation month, by the way. And I had Yeah. no idea at the time, obviously, as I'm planning the race, I just want it to be in April. And that we always do the last weekend of April because ~ that is easier to see as you're planning. You're like, we hit the month. We got this long to plan. It's pediatric organ donation week, that last week of April. And I'm like, Of course Rylen, of cour I I call them Rylen Winks now. Rylen. Yes. Can you see why? No, I one hundred percent can. ~ Yeah. I also just finished reading the book signs.

51:51 Okay, I don't I'm not a big reader. I always tell Okay. people I d the book I read is called Facebook, but I will I will take a recommendation. You can also listen. You can listen to it on Audible. What's it called? yeah, I can do Audible. It's called Signs. Yeah. What's it called? ~ and it's ~ I'm gonna mess up her name. Her name is Lauren something. No, but you just said the title. It's called yes, signs. ~ but it's Signs. I love signs. all about these signs. I love signs. I can't even tell you how much I love signs. I always ask people, like, I know your loved one passed, but I want you to be looking for a sign. Tell me what their sign is. What what is calling to you? What do you see? And like I I tr I truly believe in all of that stuff. That they're they're talking to us all the time, you know. We just have to open our eyes and our hearts and look for it, you know.

52:37 That's what she says. Well, I have one final question with you before we go. Yes. Yes. And I wanna know some of your favorite parts of being Rylen's mom. I love that gosh, there's so many things, but I love I I love that I get to say I'm still proud of my son. I'm proud of him being a hero and saving people's lives. I'm proud of ~ the impact and legacy that he is ~ continuing to make. I always say his story is still unfolding. I I love my memories. ~ and I miss his smile and his wet kisses and his his his fluffiness.

53:28 I don't want to say chubby, but he was so fluffy. A squish, yeah. Yeah, squishy, his squishiness. but I just I I love what I love what God has done through him despite us not getting the miracle that we had wanted that we had prayed desperately for. ~ that miracle was that gift of life that he was able to give to other to other families and to it's just a beautiful thing. I think it's helped me and my grief journey. and it's become an integral part of our foundation, you know, so we just we want to advocate to families that You know, you can be an organ donor and if you're not, it's it's something everyone can do.

54:21 doesn't matter your age. And we're just we're blessed with the foundation being placed in our hands and in our laps and you know Rylen standing from heaven looking down, smiling as proud I am. As proud as I am of him, I hope that he's proud of me too. You're such an amazing mom. You really are. Thank you. Thank you. Well, thank you for the bottom of my heart for sharing today with me, letting me get to know Rylen. I cannot We're gonna wait to share the amazing things that you're doing to change Yeah. the you know how small you know that the small things are the big things and having parking paid for. They are The other thing I love is this like moment that you hand the parking pass over to another family.

55:07 ~ It's like a little bit of a connection that you otherwise wouldn't have. I think that's a really special I love it. part of that. I love it. It's it's definitely and to and you know, as as sad as it is to hand it to the families that I obviously don't know, and this as sad as it is to hand it to the families that I do know, is just brings this this healing, this security that I'm taking care of somebody else and and their grief because then they can focus on the things that they need to, which is which is family. So But I hope that you guys follow us on, you know, Facebook. I'm not so good on Instagram, but it carries over. So that's an a bonus.

55:48 We love that. We love that. Make life easier. And ~ we have our right our website and you know, I just yeah. I just appreciate Well, thank you, Kristen. you for making this such a wonderful experience and letting me share and talk and yeah. It's there's n I don't think there's anything more important than making sure Rylen's story Yeah. in your foundation is out there. So let's do it. Yeah, thank you, thank you. It was so nice to meet you. Thank you, Kristen. It was so wonderful to get to know you. Yeah, at a lovely time. Before you go, if this story taught you something, made you feel less alone, or helped you better understand what families experience in pediatric healthcare, would you help us by passing it forward?

56:29 Podcasts like this grow because people share them. Send an episode to a friend, a neighbor, another parent, or share it with a Facebook group or community where you think someone might need to hear it. And if you haven't already, follow the show and leave us a review. it helps more families find these stories and learn from the parents who have walked this path before. Thank you so much for listening to Inside the Children's Hospital. We'll see you next time.