177 - Lily Wright Pt 1: Get to Know the Person Before the Diagnosis

Join current student and Spokane, Washington native Honored Guest Lily Wright as she opens up about her foster care journey, her family, her return trip to China, her astonishing medical journey, the impact that had on her parents and siblings, her profound ability to handle everything that comes with her diagnoses, and so much more!

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Transcript

0:01

Hello and welcome to this episode of the Feeding Our Young® podcast. I'm gonna start this episode with confession. I use performance enhancing drugs. oh Man, that feels good getting that off my chest. I've been wanting to say that for quite some time. Yeah, everyone knows I'm a runner and I took the whole winter off and I just picked up running again here after forcing myself to have a nice little break. I picked it back up a few weeks ago, and today, before recording this session here this morning, I ran my 216th half marathon, which so happens to be the first half marathon of 2026, and the first one in about six months. What are the performance-enhancing drugs that I'm referring to that I use? Well, it's the podcast, really. It's the Honored Guests that I get to meet, and it's the inspiration that comes from them. Yeah, I can't help but confess it. Anytime I get to talk to people that I've either never met or barely met or didn't know prior to having a discussion with I walk away man with a stronger more inspired bigger kick in my step Maybe even a little more motivation dare. I say it so yeah, yeah This podcast is my performance enhancing drug and I got another secret for you, too You're using it as well Don't worry, your secret's safe with me. I won't tell anybody that you use performance enhancing drugs, but why am I bringing all this up in this manner and in this fashion today? I'll tell you why. Because the Honored Guest that's in studio right here, right now, is so inspiring that I'm gonna say you're probably not gonna wanna listen to the whole thing all at once because here's the warning label. If you do, You're doing so at your own risk. These performance enhancing drugs are so inspiring that it might prove to be fatal. Yeah, that's how inspiring she is. without further ado, I'd like to introduce the one and the only Lily Wright. Lily, how are you doing today? doing pretty good. It's sunny and it's a Friday. Two wins in our book, yes? And you had told me before we started recording, you worked before this. Yeah, just my front desk job on campus. Nothing too bad. Just doing some homework. but working on a sunny Friday, so it's still work. Well, let's stop wasting time with me flapping my gums about performance enhancing drugs and running and blah, blah, blah. um And the only reason why I brought that up was because everybody's always like, well, you you keep talking about running and then you stop talking about running. That's because I took a break. And so today was my 216th half marathon in 11 years and my first in about six months. And so we're back on the train again, everybody. And more importantly than that, I want to get to know this exciting, encouraging person. So Lily, without further ado, where do you attend uh university? Are you a graduate? When are you going to graduate if you weren't? I go to Gonzaga and I graduate in May, so in just four short weeks. I love it. And despite her going to Gonzaga, this is not one of those cases where I said, Hey, Lily, do you want to be on the podcast? I'm officially meeting Lily today, you know, in this capacity. And so Lily had reached out to me, said, I got some things I want to share with nursing students. And I was like, let's go. So this is kind of as cold turkey as it gets. She could be from anywhere and it wouldn't matter because I'm getting to know her just like you guys are. then with that, Lily, where is home for you? Where are you from? So I've lived in Spokane the longest, 11 years, but my dad was in the army before that, so I've lived in Kansas, Louisiana, and South Carolina before this. my goodness, but Spokane the longest. So if you don't mind my asking then, because I am a local and have lived in Washington my whole life and Spokane for half of it roughly, um how would you compare these four places as best as you can remember? It's really hard to compare, honestly, because they're all just so different. You know, have the Midwest, you have the Deep South, because we lived in New Orleans, Louisiana, which that was a really fun city to live in. And then you have like the Southeast and South Carolina, and it's just all so different with its own little gems hidden. Awesome. And that's why I had to ask, because I feel like you've just been in so many different regions, that that's just so incredible. All right, so without further ado, what are the three words you would use to describe nursing school? I would describe nursing school as doable, community, and resilience. Awesome, and three of your favorite songs in life right now. I would say that my favorite is Paul Revere by Noah Khan, mostly because it has a great little mandolin bit to it and that I just love hearing that every time. The Architect, just because that's something, that's a song that's really hit my heart a lot of times growing up. And then Feel Again, just because that one holds like special memories through school retreat. how cool. And I love the reasons. I love finding out why these songs are favorites. So thank you for sharing those. Well, then let's get to know just a little bit more about you. And because your response to one of my prompts was rather substantial, let's just open up with telling us about your family. What do you want to tell us about your family? So family is very diverse. I was actually born in China and I lived with my foster mom for a couple months and then I went to, she dropped me off at a shopkeeper's um place, like at a shop and the shopkeeper took care of me for a couple more months until they were pressured to take me to the orphanage for yet a couple more months. I think I was around nine months old is what the documents say. And then I began foster care shortly after um going to the orphanage. And I was in foster care up until I was five and a half years old when I was adopted into the US. So tell us all about your amazing family. Well, like I said before, my dad was in the military. My mom did a little bit of time in the military, but that was before before me before my coming into the family. But at the time we lived in Kansas and I was just fresh from China and trying to integrate into the family. So that was definitely a difficult period of time for everyone involved. But then um I integrated pretty quickly and had just, you know, all the childhood fun, playing with neighbors, things like that. And then we moved to New Orleans, which was honestly a blast to live in. We went, we had like a good community of people from my dad's work and we were all involved in extracurriculars. And that's also where my younger sister who was also adopted from China came into our family. So about A year and a half after my adoption or two years after my adoption was when we adopted my sister and then we also got our dog there too. Our childhood dog in New Orleans, not too long after my sister came into the family. And so we in New Orleans for three years and then moved to South Carolina. And then after two years, my dad retired and my mom actually ended up homeschooling all four of us. together starting in South Carolina. So I believe my sister was around kindergarten level. I was in third grade. One of my brothers, who's just six months older than me, was in fourth grade. And my oldest was in fifth or sixth grade, somewhere around in middle school. So definitely very different levels of teaching, but she made it work all the way up until all of us eventually transferred. transferred to private school. Wow, I mean your story already I'm just like my goodness and knowing a little bit more about Lily. uh I mean adoption in and of itself as you said you know there's a lot of challenges right for you as the adoptee and the adopted daughter and the family you know what I mean adopting various children and so and that doesn't even include what I know about you and your background and so we'll get into that here in a minute but I appreciate that you wanted to share a little bit about that, because it's not often we get to hear about adoption. Is this something, let me ask you this, and maybe this is too pointed of a question, is this something that you want to pay forward? Do you see yourself maybe adopting somebody down the road, or is this just, you know what I mean, your life? I could definitely see myself adopting or even just fostering, for a little bit of time. and my relationship with having kids is a little complicated, which you can get into a little bit later. So then you are from China and you've talked about how you were a I don't like the term military brat but you were a military family yes um and you're a military family and went quite a few places have you traveled elsewhere in like leisurely pursuits? After my dad retired from the military, we packed up all of our belongings into a storage unit and bought an RV that could fit all of us and a car that can fit like all six of us plus the dog plus a cat. um And we just drove around the US for three months, just drove around, visited places, road trips, visited friends and family that... my parents made throughout their military career, just because, you know, when you're in the military, you meet so many people who end up all these places and you visit people. so I've done a lot of road tripping in my short life. but I've also been, I went back to China actually when I was 10, because even though it was a closed adoption, I, they taught me to memorize their phone number and they snuck their contact information into like the documents. So we have actually kept in touch for the majority of my life. COVID made things a little bit hard, so it's harder to get in touch now. We haven't been in touch for quite a while. um But we went back when I was 10 and I revisited my foster family. Wow. What? Okay. I mean, I have to ask, what was that like? It was a very jarring experience, I'm not gonna lie. Just because by then I wasn't able to retain any Mandarin because who do you find in the middle of nowhere Kansas that speaks Mandarin? So that was definitely like an interesting thing where I went back there were all these people. when I live with my foster family, my dad My foster dad was a businessman. My foster sister, she was in school. And so during the days I'd hang out with my foster mom and like we'd go to the market every day. And I went to preschool every once in a while. Or I don't know if it was like a formal preschool or what it was, but we learned. We learned how to write and read and stuff. But because we went out so much, everyone in the little town knew who I was. And so when I went back, my foster mom must have told everyone that I was coming back or something because she like lifted me up onto her shoulders and everyone was like hoarded around me and crowded around me and was asking like, do you remember me? Do you remember me and all these things? And yeah, my foster sister came and I think brought her fiance at the time to meet me and my foster grandmother who actually spoke, I think probably a different. So I think Cantonese or something like that was there. So lots of friends and family were there for my coming back. That is an incredible journey in just the very short period of time in the first front of your life, right? Wow. Well, I want to dive right into this because um as I alluded to here, and let me back up, this comes with a qualification, everybody, because nursing school's hard. And if you didn't know that already, um we got issues. But anyone listening to this podcast knows it's hard. Anyone who's been in nursing school knows it's hard. And so I've always maintained that of course it's challenging. I don't care if you have the most boring, benign background of life and nothing, life hasn't touched you yet in a way that has made challenges even more challenging. Maybe things have been smooth, I don't know. But. Even if that's you, and if that's you, reach out because I'd love to find out how you avoided the pains of life. But if that's you, it's still, and you're in nursing school, nursing school is still hard. And the purpose of episodes like this are not to make you feel like, gosh, if Lily can do it, I can do it. You know, it's not that kind of a thing. The heart behind episodes about like what you're about to hear with Lily's story is that The hope is that you just are as inspired as I am. When I first read Lily's story and I'm like, my gosh. And my instinct of course is like when I'm in nursing school, I need to stop my whining, right? But the truth of the matter is, it's hard for all of us. It's hard for all of us. But Lily gets a couple of extra layers that makes it even a little more challenging, we'll say, than the average bear. ah So let's just dive right in. And Lily, you're the owner of this story. You wanna talk about your medical journey, you just take the reins, sister, and if I think of things, I'll just ask you along the way, but tell us all about what you wanna share. Okay, that sounds great. So I was born with a good handful of medical conditions and in China they knew about some of them. So I was born with a club foot. I guess I'll just reveal them as we learn, like as my parents kind of found out about the diagnoses, just to kind of do that. But I was born with a club foot, my right foot. was clubbed and I was also born with an imperforate anus or anorectal malformation, which is not very common, especially with the type that I was born with. It's called a cloacal anomaly, cloacal malformation. And that's one of the more complex types. And so I actually had surgery probably when I was around one and a half, almost two years old for my club foot first. And that surgery, wasn't done quite right. Usually you would cast for a club foot. That's kind of the new thing, the best, least invasive thing. But they ended up doing surgery instead. So that caused permanent damage to my ankle that my, can't, you can't reverse anything that they did because they basically cut a bunch of tendons and stuff. So I have like four or five scars, just my right foot alone from that. And then they also did what's called an analplasty for my anal rectal malformation, which created an anal opening so that I could evacuate stool just from one opening instead, or from a second opening because all of my openings in cloaca, they're all fused together into one common channel. And so they created one opening for my anus so that I could evacuate stool that way. then fast forward to my mom and parents, my mom and dad. both knew about some of these things. And so thankfully the internet was around and my mom researched, found Yahoo groups, but when they met me, they kind of were like, my goodness, this is a lot bigger than what we thought was we were getting into basically. Cause I had this other thing where I would take three, four steps and just fall every couple steps that I took because my right leg would give out. And so my mom being the like medical mom that she is, she scoured the internet and took me to Cincinnati where that was the place to take kids with anorectal malformations and other issues, other conditions to get the very best care. one of the people that created and invented the surgeries that I've had started there. wow. he was the colleague of my surgeon who's basically the best right now in the, like one of the best. so she took me there. and I was adopted for kind of like a timeline. I was adopted early November of 2009 or no 2008. and then by Christmas I was able to repeat sentences back in English. And then January was when uh we started doing all the appointments to Cincinnati. So it wasn't even a full year. It was just a couple months after my adoption. So to preface, I wasn't fluent by any means in English. I could say phrases and stuff and understand certain things, but not fluent by any means. And so they did basically a whole shotgun's worth of tests. and found out that I have what's called VACTERL association. And each letter stands for a different condition. Then they're kind of all bundled together and you have to rule out genetic causes. So my parents actually met with a geneticist to make sure like what was going on there and it came back clear, I believe. But each letter stands for a different thing. So V is vertebral. And also you only need three out of the seven letters in that acronym to qualify as having VACTERL. So V is vertebral. I was born with a tethered spinal cord. So I had like this fatty lipoma, which is like a fatty tumor basically at the base of my spine. And they had to go in, it was like a six hour surgery to go and remove it. and I was in the PICU for a couple days afterwards. That was my first surgery in the US, so way to start out with a bang for my mom. A third surgery overall, yes. without giving away everything, of course, how many official surgeries have you had? I have had 11. my goodness. right, I'm just pausing there so that people know what like we're talking. Those are three surgeries you've had already that are major and yet this isn't even half the like story. So keep going. my goodness. but in addition to tethered spinal cord, I also have what's called caudal regression syndrome, which is where I have fusion issues and I'm missing. So your spine has, a couple of different portions. Your cervical spine is your neck. Your thoracic spine is like the main torso trunk part of your body. Your lumbar spine is what you would consider your lower back. And then your sacral spine is what you would consider your hip bottom area. I'm missing everything below S3, so I don't have S4, 5, or a tailbone. So that's always like a little fun fact I throw out in like Two Truths and a Lie or something like that. Is that I don't have a tailbone. Oh my gosh, that's wild. Yeah, and then what is left of L4 through S3 is all, um you can see it on like x-rays and MRIs, it's all like weirdly formed. It's like all incompletely fused or incompletely formed. So that also can cause other issues. It's all kind of intertwined, like what came first, the chicken or the egg. So figuring it all out is kind of hard. But then, so back to tethered spinal cord, I had that surgery about a month after it was diagnosed. And so they gave me a chance to recover from that. And then they had to start prepping for, I guess, quote unquote, the big one, which was a full pelvic reconstructive surgery to like, at the time my urethra was connected to my vaginal canal. So they had to go in and separate that and create a vaginal canal and then move my anus to the proper, like to a better location basically. And that was a six plus hour surgery also with like, I had to be NPO for 10 days, I believe. So I was on a PICC and then I had catheters There's a picture of the hospital of me with my mom and my two brothers when they came to visit in the hospital. And there's just like lines coming from me and things like that hooked up to TPN and yeah. goodness, and this is, I mean, you're young, you're young. I was six years old. I had just turned six the previous month because it happened towards the end of July. My birthday is in early June, so I had just turned six. And I mean, can we take a pause here and just, I mean, I'm assuming you would want to shout out your parents, because I just can't even imagine, right? Like, they, and through all of this, I'm assuming they've loved you, supported you, everything, Yeah. but it was definitely a big adjustment for not just like my parents too, but also my brothers. Because, know, yay, you have a new sister. wait, she doesn't know how to talk to you. You can't understand her. She doesn't understand you. then, oh, she can now understand you, but now she's always away at the hospital and mom's always with her. So. It was just like, sometimes it would just be stretches of time with just the boys at home or maybe my nan and papa would come and help my dad take care of my brothers, especially if anything happened during the summer when they were in school, you know, but my dad still had to work. So it was definitely a very involved, like full, like family wraparound help with my grandparents, my dad and my brothers. It impacted our whole family dynamic. Well, continue with your story. Sorry, I just had to interject there with- No worries. During all this, to shout out my mom, she can basically be a nurse at this point. Honestly, I've given her enough medical training that she can be a nurse because throughout all this, she knew how to give what's called high volume enemas. So we made our own saline every single day from scratch and made this combination. of mixtures so that I could use the bathroom because one of the consequences of anorectal malformations is like constipation and it can be pretty severe to the point where my colon was super stretched out by the time I got to the US and the doctor that did one of the tests saw the amount of stool that was in my colon and was like, my gosh, like how is this, how is this little girl like still functioning normally? Yeah. a sense, like acting normal, not like in pain or things like that. But it was just because my body was so used to the abnormal that it just is what it is. But she had to learn how to give me enemas and also had to be taught how to do clean intermittent catheterization so that my bladder could be emptied because my bladder was and still is high pressure, which increases the risk of reflux into the kidneys, which is an infection issue. And speaking of the kidneys, I only had, or I guess I shouldn't say had, I have one functioning kidney. The other one is completely scarred over and functions at less than 10%. So I really only have one kidney. And that was something where they didn't quite know if it was due to reoccurring UTIs as a kid. and baby before I got treatment or if that was just how I was born, it's kind of hard, but they count it as part of the R and I'm on like, you I can't have NSAIDs and things like that. I'm on those precautions when I'm in and out of the hospital and stuff like that. So only one working kidney. And it's also called a neurogenic bladder is what I have. So it can be overactive or underactive. It really depends. So I'm on, I've been on medication since I was five and a half years old for that basically. And my mom had to learn how to, like I said, cath. And then another thing was that my bladder, when they had scoped my bladder when I was a kid, had so many open sores in it from the reoccurrent UTIs that my mom had to directly put gentamiasin in my bladder for a full year every single night just to heal my bladder. It was insane what she went through. Every four hours consistently, she was awake overnight, cathing me or doing the gentamicin irrigations. I, Lily, I can't, and I know we don't record video for reason, but I'm I'm sitting here with my mouth agape this entire time. just, you are an incredible, incredible human being, and so is your mom, and so is your family. This is amazing. I, continue your story, sorry, wow. so after that big surgery, everything was actually pretty stable, pretty good. My kidneys were looking good. And the only next surgery I had in my young childhood was called a Malone appendicostomy, is basically where they take your appendix, because your appendix is attached to your large intestine. and they bring it to the surface of your abdominal wall. So for me, they actually just put it into my belly button. They like just use my belly button. like cosmetically, you can't even tell that it's there. But it's basically a way to do an enema from above instead of using having to go from below. So I would just thread a catheter in, connect everything and let it flush out my colon from top down. And that was for um quality of life so that I could have my own independence and be able to do things on my own eventually and not have to have my parents with me all the time. And it was just like a less traumatic way of doing bowel management because another thing that I forgot to mention was with the big pelvic reconstruction surgery, whenever you create an opening that has to stay open, you have to keep it open manually. So we had to do months of what's called dilations. So it's basically what it sounds like. You have like this plastic or metal rod and you have to put it through the opening each like every single day basically. And that has been, that was probably the hardest thing on not only me, but my mom and the rest of my family because as you can imagine having something there is not comfortable. in the pelvic region. So that was definitely something that was a very hard time for everyone to go through. cause my mom hated doing it. Obviously I hated it. And then my brothers would hear all the like commotion and stuff like that. Cause we lived in a small apartment or actually, no, we were in the house at that time. but still, you know, you could still hear it. so that was definitely like a very big challenge to get through. but after that I got the Malone surgery and honestly life was good. Life was normal besides just like yearly doctor checkups. I would just do yearly doctor checkups and I would do my flushes every single day. and I learned to cath myself. I taught myself how to cath when I was almost seven years old, just because I didn't want my mom doing it anymore. so around the age of the end of, like right before I turned seven basically is when I wanted to cath myself. So I was cath-ing myself. My parents were still helping me with the flushes, but life was pretty normal. I'd lived a very normal life growing up, honestly, besides obviously the medical stuff, but I was able to still do all the things that kids my age could do. I just had to step away for about an hour to hour and a half each day to do my flushes. and we always planned our days around that because I would usually do it in the evenings. So any activities that I was doing, I would either do my flush before, do my flush after. So it was just about scheduling and planning and stuff. But if things are planned and they went according to plan, then it was great. Wow, I don't even know where to go from here other than I can obviously this takes a physical toll. You've talked about that, right? What kind of mental toll does that take on you as a young? I mean, I know that as a Peds nurse, like we always said, you know what I mean? Kids are just absolutely incredible. You know, our hemonch patients, they just they're fighters. You know what I mean? They don't know any different and I get that spirit from you straight away, but I mean, it had to take some sort of a toll, maybe it still does, I don't know, but go down that road for us if you don't mind. It definitely was a difficult thing to navigate growing up because when you're really little, like in kindergarten, first grade, you can't really tell peers just because it's either you have, they'll ask a bunch of questions or things like that. Like one time in kindergarten, I, so when I was in school, school nurse would come get me and cath me during school. in her office and stuff like that just because you I hadn't I wasn't able to cath myself at the time and one of the girls in my class um noticed that whenever the teacher said everyone had to go try use the bathroom I didn't have to go or like I didn't go and then so she was a little bit I don't know she just like called over the teacher and asked the teacher or was saying Lily didn't go into the bathroom to even try to go potty And when I, before she called the teacher, I said, mind your own beeswax. And then she called the teacher when I said that. And then the teacher was like, what's going on? And then the girl was telling her about her her question about why I didn't have to go in the bathroom. the teacher basically said, you know, mind your own business in the nicer way, like in a more teacherly way. And then when the teacher turned around, I kind of smirked at the girl, which is probably not very nice, but I have learned my own ways of navigating situations. oh It wasn't until probably close to eighth grade or freshman year of high school that anyone, anyone from any one of my friend groups really knew about all the like more details about my medical history, like about my medical journey. Just because, you know, middle school is an awkward stage, it's really hard with that. And one of the things that I struggled with in middle school was, so another condition I have is that it's called MRKH, Mayor Rokitansky-Kusterhauser Syndrome. And it's basically where everyone who has is has XX female chromosomes, but their uterus or their vaginal canal or both are underdeveloped. so because of that, they don't get a period. They still have hormonal cycles because ovaries are still there, but you don't have the physical bleeding. Or if you do have some bleeding because you have part of your uterus that works, but not the vaginal portion, then the blood accumulates and that becomes a medical emergency sort of thing. Like that can be an issue. But with me, I had an underdeveloped uterus and they actually went ahead and took it out when I was six during the reconstructive surgery, just so I wouldn't have to deal with any complications from it because it wasn't gonna be functional. And so when other girls were talking about getting their periods and stuff, that was like a conversation that I felt left out about. And that's why I say my conversation, like my relationship. with having kids is a little bit rough because it's something that I love to have biological kids, but it's gonna be expensive any route I go. that's kind of just like, I've toyed with that a lot throughout my life. But another factor that comes with all this medical stuff is that I was actually diagnosed with PTSD from all of these medical things just because of how invasive they were and in like the particular area of the body that it was because like for me, IVs, you can poke me all day and anything like that. But if I have to get any sort of physical exam, that's where it kind of manifests is in those things or going under anesthesia, those types of things. So that's definitely something that I've been working with a counselor through. things like that. So that's been its own journey. Yeah, I would say So, Lily, looking at the time, I feel like this is an incredible jumping point to turn you into a two-part episode. So before we do, is there any other part of this, I mean, mind-boggling, I don't have a better descriptive term for it, this mind-boggling medical journey that you wanted to share with us? there is a point more recently where I had a bit of a flare with my medical journey where the stability from childhood flared and a bunch of stuff happened. So I think that would be a great segue into the next episode. Aha, because that, being recent, I'm assuming that means it happened during nursing school, yes? Yes. Alright, well then you heard it here first, ladies and gentlemen, everyone. Just, let's head on to the part B of the Lily Wright Experience, and we hope to see you guys there.