Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
What Matters Most: A Medically Complex Adult Reflects on Childhood & Parental Love
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Every parent of a medically complex child wonders: Will my child grow up knowing how deeply they are loved? Will they appreciate how hard I fought for them? In this episode, we bring you a powerful answer straight from someone who’s been there.
Annelise Frazier, born with a rare and complex medical condition, shares her story of growing up with surgeries, complications, and hospital stays—but more importantly, growing up surrounded by love. She reflects on the biggest gift her parents gave her: they loved her so boldly and advocated so fiercely that she never felt different or defined by her diagnosis. Instead, she felt like a kid—just a kid—who was deeply cherished.
For parents in the thick of this journey, this episode is a glimpse into the future—a message of reassurance that your child will remember the love more than the fear, the joy more than the hardships. Annelise’s perspective will remind you that your love and advocacy are not just necessary, but transformative.
Join Ashlyn & Ashley for this heartwarming conversation that will uplift and encourage you to keep going, keep loving, and keep believing in the beautiful life ahead for your child. *Spoiler, Annelise has the same condition as Ashlyn & Ashley's daughters!
Make sure to subscribe, share your thoughts with us, and connect with our community—we are all in this together!
Annelise Frazier is a small town bookstore owner diagnosed with Classic Bladder Exstrophy, Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Mast Cell Activation. She has been chronically ill since birth, but does not let that define her. She loves reading romance novels, baking allergy friendly treats, spending time with her family and raising her pet cat Fig and rescue Border Collie, Hollie. When not at her bookstore, she and her husband enjoy traveling the country searching for the greatest history museums. Annelise has spoken out for children with disabilities at many conferences and intends on using her background in medical research to provide a safe space for all those struggling with the daily life of medical complexities.
Shop & Support Annelise: Pig City Books
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Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, Empowered by Hope, is here for you, Though we wish you didn't know this heartache. We're so glad you found us so together we can walk this journey in hope.
Speaker 3:I am so excited to bring two of my favorite people together Finally. It feels like it's been like in the making for well, I guess almost four years now. So Ashlyn, annalise, annalise Ashlyn Annalise is an amazing, amazing support system for me as I've grown over the last four years with my daughter Maren, who has bladder atrophy, and then, of course, we have Ashlyn, who also has a little one with bladder atrophy, and so we've been supporting each other, and so it is finally time for us all to come together and connect the circle.
Speaker 1:Welcome ladies. Yes, annalise, thank you for coming. And I just want to put out here that this is the first time I am meeting somebody who is considered an adult, who has bladder extra fee. And I'm saying considered an adult because if you're not watching this, annalise has like the most dewy young looking that I'm totally jealous of right now. But yeah, this is actually like a really cool big deal moment for me. I'm so thankful you're here.
Speaker 4:Thank you so much for having me. I don't feel like an adult.
Speaker 3:So it's so strange. Don't lose that girl. Hold on to that, oh my gosh, yeah.
Speaker 4:So it's so strange. Don't lose that girl. Hold on to that. Oh my gosh, yeah, I'm going to hold on to that as long as I need to, but no, I'm super, super excited to talk about this. I was just telling you guys, a little bit off air, that I haven't really shared my story since my college essay, so it is a little bit strange, but I'm very excited and I don't often talk to BE parents, so it's like a little bit back and forth.
Speaker 1:I'm excited now remind me, how did you two actually connect then?
Speaker 4:so you want me to tell the story? Yeah, yeah, go for it, okay. Yeah, so my mom was on a BE group. I am currently not on any um bladder extra feed groups. I just didn't feel it needed in my life. But my mom is and she had noticed that Ashley's husband had posted about Marin and we were actually living in the same area. So my mom sent a message and said, hey, you know, like my daughter's up there, if you ever need anything, she's a really good resource. And I was super excited to reach out and eventually we had some dinner together with the girls and I was like, oh no, we're best friends, we are now besties. I love Marin and I would absolutely do anything for both for her and her sister, but Ashley is like a sister to me and she was at my wedding and it was like grown into this really amazing friendship which I was super excited about.
Speaker 3:It's fun. We always say like we would be besties regardless, but the connection with the bladder extra fee and how she's been able to support me as I like, try to make decisions for me and has just been life changing so we would be friends anyways. But it's been, we would. It's such a huge blessing for our family.
Speaker 4:Yeah, or a little sister with glowy skin, something like being a BE mom like you. There's no filter, so like I can ask Ashley anything and she'd be like yeah, okay whatever.
Speaker 2:And vice versa. It's been awesome, it's been awesome.
Speaker 3:Well, thank you I am very excited to have Annalise on our podcast today because I think that it is just an awesome opportunity to hear from an actual child that is medically complex.
Speaker 3:This whole end goal with Parent Empowerment Network is to guide these parents and to help reassure them that you are going to be okay and Annalise is a child that has been through a lot in her life and she is okay and her parents have done an awesome job and, and, and they are okay, and I just really thought it would be encouraging to share that with everybody and to share some things that work for them, or share some things that Annalise wants everyone to know.
Speaker 3:So one thing if you follow us on social media, you've seen us share our 10 truths that we want all parents to know, and Annalise actually saw those two and had a couple of favorites. So I thought that might be kind of a fun thing for us to talk about today and just for her to share what she thinks is important for us as parents to remember as we raise these complex children. So just to go ahead and share a couple of her favorites and then we're going to let her dive in Two of her favorites that she wants us to remember is that it is your right to advocate for your child. Never feel bad about being their voice, and then you're doing the best you can with the information you have. So, and then her last her life goal is that there is always hope, and I can't wait to hear you talk a little bit about this, annalise. I think it's going to be really awesome for us.
Speaker 4:Thank you so much. I definitely tried to tie it all together, but all of the truths are like something that you follow forever, and so the whole story talks about all of them, but definitely the story of hope is going to be number one. Talks about all of them, but definitely the story of hope is going to be number one. So when I was, you know, I obviously don't remember a lot about my medical history and especially about my own birth. So when I went to go talk to my parents about it, you know, I had to remember that this is their trauma and that it's different. Their trauma is different than my own and it was scary for them and it was scary for me, but the relationship, it's different for my dad, it's different for my mom and I am the last of five children, so it's different for my siblings. This is definitely my story, but it is their trauma as well and I want to respect that and I love them very, very much and they are definitely my rock and I would never be able to do this without them. So I was born in 1997. Believe it or not, it was like really long time ago for me.
Speaker 4:I was born in Hartford, connecticut, at a women's hospital. So my mom was over 35. She had had a level three ultrasound but she did not know that I had bladder extra fee. They had seen what they thought was maybe like a heart murmur, but they weren't a hundred percent sure, so they went ahead and induced. We didn't know anything going forward. So I do have bladder extra fee, considered classic bladder extra fee. This is a birth defect, as you guys know, where the bladder is developed outside the body and the hips are born splayed open. But because my mom did not know that I had bladder atrophy, she gave birth to me without an epidural, naturally with my feet first, and I was a 18 and a half pound baby.
Speaker 1:Can we all just pause to take a moment of tribute to annalise's mom?
Speaker 3:yes, yes for accomplishing that.
Speaker 1:She is a rock star she's a freaking rock star no offense to anybody who completes an iron man or something like that, but your mom just like rose to the top.
Speaker 4:Yeah, my like impressive levels, that will be a theme moving forward is that my mom is a hero.
Speaker 4:That is for sure so I can't imagine how scary that was. But yeah, I was born feet first out. Um, they obviously knew, like looking at me as that came out, that there was a defect, but they didn't know what it was. So the first thing they did was take me out. I see you, and they just told my mom she has a midline defect. We don't know anything, like you, just you sit here. When they whisked me away, my mom didn't know where I was and she was like I'm not about that life. So they whisked me away and my mom had no idea where I was, what was going on. So she was, she sent my dad and of course they wouldn't tell him anything either, because they didn't know anything. And so they wanted to send me to the children's hospital that was down in Hartford and they wanted my mom to stay because she had just given birth. And she said no. So they loaded me into the ambulance. They would not let my dad go. My dad went home to the other children and my mom left AMA and, two hours after giving birth, left the hospital and followed me in her car in the ambulance. No Tylenol, no, nothing. She was like you are not taking my child to another hospital where I am not at and nobody can get to her. So I can imagine she was very scared.
Speaker 4:The next morning they still didn't have any answers. My bladder was still out of my body. In fact they didn't even really know it was a bladder because it was only two millimeters or two cc's of fluid could fit. So it was very, very small, small. So they just kind of assumed like there was something protruding out of the midline, not knowing, and they just kind of looked around and kind of were shrugging like I, I don't honestly know what to do. And so my mom was so scared because everybody around him was like I don't, I don't know, I don't know this, I've never seen this before, I don't know what this is, I don't want to start operating because I don't know. I don't know this. I've never seen this before. I don't know what this is, I don't want to start operating because I don't know anything.
Speaker 4:And there was a doctor that was passing down the hall and he had not started rounding yet, but he was going to become on staff at the hospital and he had previously worked in Toronto and he had seen bladder atrophy. And he had previously worked in Toronto and he had seen bladder extra fee and he was like I know what this is. So instantly everybody was like, oh my gosh, thank God this man knows what this is Like. So my mom immediately was like, okay, somebody knows something, we have an answer it's bladder extra fee. But I don't know. This guy Like he says he knows what this is, but I don't know anything about this.
Speaker 4:So she sent my dad home to get more information and of course this was the nineties. So we didn't have any internet. We had to dial up, I guess what I'm picturing. So I asked my dad. I said dad, did you Google the bladder extra fee? He's like Google, it was the nineties. We dialed them Google the bladder extra? He's like Google, it was the nineties. And I was really funny. So he printed off the one thing he could find, which was some peer reviewed article about bladder extra fee, and he brought it to the hospital and the nurses were like give me, give me, give me, like anybody, something whatever.
Speaker 2:Wow.
Speaker 4:And they cause. They didn't know what to treat, how to what to do, so they had to go off this doctor that was not on staff yet to move forward Once they had a guy that I'm sorry I was like it's almost being able to Google now, cause it's not the nineties anymore.
Speaker 3:It almost feels like so much, and it's almost too much sometimes when parents can like google everything. But I can't imagine being in your parents position where they, like he could find one article like how terrifying, yeah you just have to trust, and there's no doctor's reviews online, right like.
Speaker 3:So he can't even like, really like, look up that doctor, see if he has good reviews, because they didn't have that, I'm sure right guys yeah, that's so all and sees a baby and he's like oh, I know what that is Like. Okay, I can't imagine how scary that was.
Speaker 4:Yeah. So my bladder is out, my hips are displayed and my mom refuses to leave my bedside so she is actually nursing me over the bedside and the nurses are like you don't have to breastfeed. My mom's like, don't talk to me, I'm a breastfeed this child. And she did. She's a freaking hero. So they had to move forward and at 48 hours old, my parents decided to allow this doctor to do my initial bladder closure. The only issue with that is that he didn't have a team, so he had to work with doctors that he had never worked with before, and these doctors had never performed on a bladder extrophy baby. So I had my initial bladder closure, which was successful, but I also had a hip osteotomy that failed, so I had lots of complications after that surgery.
Speaker 1:Oh, bless you.
Speaker 4:Yeah, so so much fun. I think about that, about. I think about that all the time now and I'm just like what were my parents supposed to do? What was the other option? Exactly what they did. Exactly what they did, right. So I, of course, am doing much better now, but back then they would use a traction unit to keep the children from moving because they had just had an osteotomy and the bladder needed to heal. They would literally hang you with your back up, your feet up and your legs tied up into the air and when they did my traction unit, they tied it too tight and after six weeks, when they removed the bandages, they realized that they had let it go to the bone and it had broken down all the way into the bone. And both the doctor from Toronto and the hip guy were blaming each other on the other side over my bed and actually began to fist fight over my bed. So you can imagine how scared my mom was, because she could see my bone and she could see that something was wrong and very clearly that the doctors didn't know what to do and very clearly that the doctors didn't know what to do Right. So after that we had a lot of lawyers come in and constantly be talking about my parents, about malpractice. But what are you going to do? You're going to sue the one bladder extra fee doctor, the only one that can see you Right After you sue them. They can't't treat you, and he was the only one, and so we didn't really know what to do. So my mom took the extra six weeks that I needed to stay in the hospital, continued to let me heal and then we left, and after that I spent the rest of my life getting second opinions. My bladder was inside my body, but it only held that little two cc's of any fluid. Thank goodness my kidneys were doing well, but it was constant.
Speaker 4:At this point my mom really had to embody being my voice, because she needed. From now on she knew she needed more answers because we had had so many mistakes in moving forward. It led to lots of infections, extra surgeries, you know, trouble with the osteotomy, and my parents flew all over the world trying to find better options than what was in front of them. My parents flew all over the world trying to find better options than what was in front of them and we always joke that like I'm the most expensive kid because I've always met the deductible. But like, really back then a lot of VE cases were done with the bladder neck procedure and it is it's known to fail. And they're told so many conflicting things Like I had one doctor tell me I was never going to be able, I was never going to have to cath, and they're told so many conflicting things Like I had one doctor tell me I was never going to be able, I was never going to have to cath and I was going to be able to avoid from below. And why would we have waited, you know, so long to proceed? And my parents really felt like it was never a great choice, like it was just bad choices.
Speaker 4:So, on top of trying to figure out what I was trying to do for my future, we were constantly having to do the day to day and looking back, my parents were like the future was never really the issue. We just wanted to talk about how we were going to move forward in the day to day so that we be able to live and to do things and to dance and to whatever. So what are we? What are we going to do? Like how, if she spends her whole life, you know constantly having surgeries for the future, are we going to be able to live? And so we went back and forth a lot and my parents knew that medicine was evolving. They had heard of this doctor that was growing bladders out of stem cell research and it's actually one of the reasons why we moved to the area that we live in, because we had hoped that had been an option for us.
Speaker 4:It was not, but we did try. Wow, there are so many things that, for example, you know, maren and everybody in your guys' family, that it's not abnormal to go through these things, to go through the constant surgeries, to go through these things, to go through the constant surgeries, to go through the complications, to go through all these things. It's, it's just kind of expected. And so my parents were like I'm not okay with that. I'm not okay with that, like we're going to do what we can but we're going to continue to live throughout all of that. And living on the edge of that medicine is really terrifying. But all you can do is the best you can with the things that are handed to you. And we did. And I danced as a child. I was an avid singer, so I did a lot we like did all kinds of stuff with music and I was in the marching band. I could have done PE, I think, but I really didn't want to. It's my parents like you know what. You don't have to do that one.
Speaker 3:It's like that college essay, get that scholarship, get that PE, excuse note.
Speaker 4:Why not? Right? I've never like, not needed a doctor's note. I've got one. Don't worry, I'm ready.
Speaker 2:Yeah.
Speaker 4:So it was really. And I, of course I have all the other siblings and I love them very much, but I felt no different than them. I just thought I was just another kid, Like I didn't know. On top of some of the other things that I have, I have mast cell activation syndrome and it has a lot of food allergies. And I would go to school and this is the nineties, right, so they didn't have nut free school. And no, no. So the principal would say, okay, she has very severe allergies, so she's going to eat lunch in the principal's office. And I would always think I was in trouble. I was like I'm in trouble every day and my mom rushed right up to that school and she implemented like the first nut free school system because she was like this is unacceptable. But that is the kind of woman that raised me. She was always trying to find the alternatives to whatever I needed so that we could continue forward. And she is still that woman to this day.
Speaker 1:Wow, I want to take a moment to unpack some of this. First off, thank you for sharing that because, I mean, my mind is blown. One of the things that blows my mind, though, is how many parents still experience receiving like learning that their child even has something at birth, that is, that is still extremely common, not just in bladder atrophy. Majority of cases are not found until birth, still to this day, and I just want to pull on a couple of threads here that I was catching as you were talking about this, and I mean, Ashley, did you, did you notice how how much she's hyping up, how awesome her parents are this whole time? You're blowing our minds with these like really extreme medical experiences, and it sounds like pretty consistent part of your life, truthfully. But you have this smile, Like when you were saying, like I danced, I did singing, I did marching band, like you're just glowing while you say it and nothing about it feels like you're trying to sell us on anything and you can tell you so genuinely. Look back on your childhood with joy Very fondly, is what it feels like. No, I'm not saying that you didn't have hardships, but the fact that you saw yourself as I'm just another child in my family I help us meet our deductible. Awesome, Like makes the other things easy.
Speaker 1:I want to call that out for us as parents because even for me, when you talked about, your parents weren't so obsessed with the future and I think that's really helpful for me to hear now, maybe because our girls are so young still, Ashley, I feel like a lot of my fear and weight of concern is usually around trying to guess the future, which nobody can do right, Not worrying about, like every decision that I've made, like you know, when I chose to take Emory to another country, to be like literally first American to do that, why? Why are we the first ones Like, are we that crazy or that wrong to be doing this? And what if this creates a domino effect in her future that completely reroutes her life, whether it's, you know, affects not just her bladder health but her kidney health or having children, or you know all these things that I just was obsessing with them and hearing your story and how your parents realized like no, we got to focus on living life now that actually I I'm just like absorbing this. I'm curious, Ashley what are you?
Speaker 3:what did you do? This is why I wanted Annalise on our podcast today, because that has been the biggest encouragement to me and, honestly, like I've tried to apply that to Maren's life, a lot like Maren's in gymnastics. Now, you know, and at first I'm like, oh, you know, she's had surgeries and she's got her stoma, and what if they try to get her to flip around a bar? Is that going to hurt? And I'm like, no, she can do it. And if it hurts, she'll tell them no, Because Annalise and her parents I love her parents as well and they've just I love who Annalise is as a person and the fact that they've raised her just to be like you can do whatever you want.
Speaker 3:That's what she said, Like early on, like Marin was a tiny baby and Annalise is like I did anything I wanted and my parents figured out how to adapt it so that I could do it. And that is what I want for Marin, that's what I want for Emory. You know, like I want our kids and all the kids of all the parents, listening like let them try, let them do, and if it doesn't work out, then you pivot and you do something else. Right, and at least like but you did everything and um, except for PE cause you didn't want to.
Speaker 4:No, and I'm sure I probably would be in better shape if I had. But, as you know, like one of the things with PE kids is swimming, and you know like, oh, you have all these tubes, oh, your stoma or you know whatever it may. It may be like, oh, you don't need to do that. And Ashley and I were wondering about Marin one day and I'm like, go off, queen, let her go, let her be, let her do her thing like she loves it. Never, yeah, we are never gonna stop being children first, right, and you're never gonna stop being parents first. And then you know, you can be chronically ill and I think the biggest thing for my parents is that they loved me so loudly that I could hear nothing else.
Speaker 3:Yeah, oh, wow, oh that makes me want to cry.
Speaker 4:It's true, though I, I, yeah, they loved me so loud that it didn't matter. You know so, and you guys, as you guys know, doctors are not always the best with bedside manner, and so you're sitting what, what, what them no what kind of lies are you spitting in?
Speaker 4:As I'm getting the world's tiniest violin from one of my doctors, I distinctly remember my father saying like no, this is real, we are not doing this and you are. You're going to support this because this is real for her, and it's like always having two amazing people in front of you Anytime you have to do anything.
Speaker 3:You know so and they're really great to point out.
Speaker 3:Like one other thing, ashlyn, that I heard earlier and I kind of want to just like make sure everyone else hears it Annalise is talking about all these hard things and these decisions her parents made and she is not like parent guilt, mom guilt, whatever you want to call it is so real in this world of like being a medically, you know, complex parent.
Speaker 3:None of her story has had anything to do with her being angry about decisions her parents made or like wanted them to feel guilty, or you know that that traction story is horrific, you know, and the fact that, like you're not mad at your parents, they did the best they could.
Speaker 3:You even said that like they didn't know any better, they had one guy that could do something for their daughter and they chose it because they had to, and and you don't like hold that against them and I think that's been like for me to see that has helped me so much in marriage, because how many times before this last summer, with a dead marriage, so much surgery, and I was like you know, lisa, is she going to hate me for the rest of her life? Like what if I'm choosing something she doesn't need? Like I told you that, ashlyn, too, like that was my biggest fear, and like the way you live your life and the way your parents are now I see that your parents with you too, and it's like I hope that that's what I have with Maren, you know, and I hope that that's how she views all these decisions that I've made, because I didn't know any better.
Speaker 2:Right.
Speaker 4:Like I did a lot of studying, but then, like I chose what I, you did the best, Right, yeah, exactly yeah, and I just all you have is what it's in front of you, you're not a doctor, I feel like, as parents of chronically ill kids, you're like where's my medical degree? Cause.
Speaker 1:I have the mom, indeed, or the dad, and yeah, yeah, oh, it's so real.
Speaker 4:The school of hard knocks is what we go to and what you have to do now is give that knowledge to your child so that they have it. But absolutely and I asked my mom, because this is one of the things we talked about I was like do you feel guilty? She's like every single day of my life I feel guilty. Every single day of my life, I really do and I'm like why I really want to talk to your mom.
Speaker 3:I know we have her on here for Mother's Day an invitation.
Speaker 1:What's your? Can I ask your mom's first name? We can cut it out, if you don't want it.
Speaker 4:Helen. Yes, absolutely, my mom is Helen yeah, she's a dream.
Speaker 1:You are amazing, you're amazing and I'm going to um. Actually, I want to take a second to point this out before I forget. I think we'll link this in the show notes. We have a full episode. It's one of our first 10 episodes on our Start here journey and it's we call guilt the real green-eyed monster, and the most important thing to take from that episode is that guilt is a natural feeling in this journey. Like to tell somebody not to feel guilty is to tell somebody don't breathe air, Right.
Speaker 1:But what we try to teach parents and this is how we can all support each other and feel like empowered parents right is to shift your relationship with guilt. Let guilt be a guide of what you're most concerned about for your child. Maybe, like you know, if you're feeling extreme guilt, my kid doesn't get to do. Like actually I'm thinking about your story is such an incredible example Like my child's not getting to experience being a child because we're doing all these tests and these surgeries and these procedures. Well, what you're feeling guilty about is what you said at the beginning that my child is not getting a full child experience.
Speaker 1:So what are some things that maybe you can do? What are some things that maybe aren't critical. Maybe we can hold off on some of these tests. Maybe we don't have to do this therapy right now. I know Emily shared the example that they wanted Charlotte to do hippotherapy, horseback riding. Well, Emily finally realized why would I make it therapy when we can just go to a horse ride stable and just say this is a kid taking horse lessons like other kids her age and it is fun, and I loved that thought process. So, but we'll share that episode or link to it here about guilt, because I think that is oh man, so so yeah, so go ahead and continue.
Speaker 4:When you said your mom feels guilty every day, I'm like, oh, she does no but I think, like then what's the point of the guilt If I feel it too, like what's the point of all their hard work If I hold onto that it's not valuable for me and not valuable for the work and the effort that they've put in forward, for me to care about all those little things that have happened, cause I think everybody has a thing right. I always say this, and the one thing about bladder x-ray has given me is extreme empathy and into the fact of, like I think everybody's great and my husband would be like I don't know All got children and all that yeah.
Speaker 4:That person's having a bad day, whatever. But absolutely you can be empathetic to other people's situations and your parents' situation and everything that they went through. But you just have to live life and be proud of where you've come through, what you've done.
Speaker 1:Yeah, Annalise, I feel like this is a great opportunity. You just started us on this path, like you said, where you feel like you have probably like and, I would agree, above average you know empathy for others Like. I even see that in my son, who is my daughter's older brother, so he doesn't have the medical things, but his teachers like that's been something he's experienced at school, that his empathy level is much higher than his peers, which they're like right now. Honestly, sometimes it kind of is. It puts him at a disadvantage socially, but they said, as he gets older, though they're like he's's, it's going to be such a huge advantage for him in the future. It's just a lot to manage. As a seven, eight year old, what do you feel like? Are some skills or characteristics that you personally have and you apply in your life that you attribute to how your parents advocated for you?
Speaker 4:So I think there's so many good things, and one of the things is being extremely empathetic, having extreme knowledge of things as well. My parents, every single time we would go to a doctor's visit, would make sure that I understood what was happening. Down to. This is the band-aid, and this is why you need it Now. I've had years of therapy Let that be known Years, and, as we all should, that's definitely been helpful, and my parents did make sure that I had that, and I was an extremely anxious child because of all the things that were going on and the PTSD of all of that. So, of course, years of therapy and childhood did absolutely help with that, but in respect to like my condition and the way that they handle things, I think that I have this outstanding knowledge of life and of the human body, of my own body, of people, and empathetic to people and understanding.
Speaker 4:One of the things I do have, though, is skepticism. I am very skeptical of doctors and situations, and I don't do anything without thinking about it five or six times. Whether that's good or not, I don't know, but I think that, because we were always very skeptical, I developed many other conditions later in life, so I've needed continued care and my parents still come with me to whatever doctor's appointment I want them to, they have to ask first. They say, can I go? And I say I guess will you buy me ice cream first. Like well, like what's happening.
Speaker 1:Like my mom heart, just like, like yeah, I don't know Just like swelled with like, oh, like.
Speaker 3:I would love that, but no pressure.
Speaker 4:No, I know, and my dad just like swelled with like oh, like I would love that, but no pressure, no, I know, and my dad is the best. He is like okay, like this is HIPAA. You know, are you sure you're okay with me knowing this? I'm like, dude, you were at the office, like it's fine, but they like my, they always are my researchers, they're my people. They're like let's discuss this. Like what do you think about this? Of course, my opinion comes first, but I do like really value them and how much they care about me and how their voices for me have been consistent.
Speaker 3:And I think that's really cool because you know, when you were a baby, you didn't have a voice, right, you're just going to cry, right, you can't fight for yourself.
Speaker 3:When you're a baby, you can't advocate for yourself, and your parents did. And now what I love seeing when I talk to you guys and when we talk about your appointments and all of your things, is that like they're still advocating for you, but they've also taught you how to advocate for yourself, like you are so feisty in the best way, and I love that because you are going to get a second opinion when you need or want one, or every time or whatever, and you're going to learn for yourself so that you can fight for what you want for your body. And I love that they did that for you and then that they taught you how to do that for yourself. I mean, that's our goal as parents, right Is teach our kids how to have a voice, right, but I love that they still get to go with you when it's okay with you it has to be okay with me?
Speaker 4:Yeah, yes.
Speaker 3:Yeah.
Speaker 4:Great One thing that, when it comes to advocating for your child is, you are more than advocating your child to other people. You are advocating for your child to your child, right. So you are telling your child your body is beautiful, your body matters you. It's a constant like, and that's why I say they loved me so loudly is because I never felt that my body was any different than anybody else's. I never felt like there was anything wrong with it. I had medical things that I did daily, that they taught me so I could do to myself, you know, so that we can move forward. But I knew that kind words were always going to come from them and that motivational things were always going to come from them.
Speaker 4:For example, we all deal with like chronic pain and things like that, and that makes you really in a weird mental space. And I can go to my parents now and I can say this sucks, like this is terrible, like I don't want this, this is terrible, and they'll be like, yeah, this is terrible. What do you want for dinner? You know, and so they're really good about. You're right, that's true, but let's navigate into something else or being there when I do need to sit down and talk about it, and sometimes they need to talk about it too, right? I think my mom really felt so strongly for me that she forgot that this was a lot for her too, and so in the years later we've been able to talk about it and like that's grown our relationship. I loved myself so much because they loved me so much I. It's made me into this really amazing, strong person, which I think is important.
Speaker 3:Absolutely. I mean, that's our, that's our dream, right Like our dream for our kids is to be a strong, amazing person. And obviously you are, and that's like one of the quadrillion reasons why I love you so much and I'm so glad you're part of my family now too one of the quadrillion reasons why I love you so much and I'm so glad you're part of my family now too, I'm good with Thompson family as well.
Speaker 4:I would love that. I love that. And it's hard. Like you guys have young children. It is so hard to tell a traumatized five-year-old that, like you need to have this injection every day or we need to do your two feet or whatever it may be. Like that five-year-old's like, no, I'm going to watch Bluey. Like I'm not doing that, yeah, but it is so, so important to stick through it because it's easier to do those things for your child. But then when they hit to be a teenager, they need to be able to feel independent and to navigate these things and to do it by themselves. So my parents spent a lot of time making sure I knew what to do with my body and I could do it when they were not around, so that later on in life I would be in high school or and I don't want to say didn't need them, but I could. You know the need was different. It's so much easier when you're an independent, you know teenager being like I don't need y'all.
Speaker 1:Yeah, Well, right, Like you could go out with your friends and like not have to be like oh, I got to go home, so my parents, can you know help me with this or with that?
Speaker 4:Like I can't do it alone, Well your girls will also have me, so that's helpful. Well, I know.
Speaker 3:Absolutely, I have to add a little plug for Annalise. So you know we did Maren's big surgery to get her stoma last year and I was very nervous about it because Maren is terrified about anything near her belly or was, and Annalise would come over to our house like before her surgery and let her watch, like Maren would watch her cath or stoma and be like, look, maren't hurt, and mary's like you're doing that in your belly and it doesn't hurt you and annalise is like no, and yeah, it doesn't hurt her parents taught her, and now she's like teaching mary, and because it's different when your mom says it too.
Speaker 2:So it's been really oh yeah, you have to. I've never done that before to myself, right, I don't have that so it's.
Speaker 3:it's really cool, like to see how, what an awesome human being you've grown into and like how you're passing down like that education from your parents and that, like the way you explained it to her and like made her understand, it was just really cool and you can see that that was your, what your parents did for you, you know, um especially with what knowledge we all have know um, as best as they can with what knowledge we all have, because it's.
Speaker 4:But I took that and, like I did, I did it for Marin. But while I was in college I did it in nursing school, like I. I was like, who wants to see my stoma? I really did because I had no shame. I was like there's no shame, there's nothing. I, I have done it all.
Speaker 1:Wow, I can't let this podcast come to an end without asking this Annalise and maybe this is a little bit selfish, but for your sake, maybe picture your own parents, think back to them and, as you yourself right now, who you are today, if you could go, if you could somehow jump back to their lives when all this was starting with you, what is just? What is just one thing that you would want them to hear from you.
Speaker 4:I think the easy thing to say is that you know, I was okay, because I think that's what everybody wants to hear. But I think, more than that, I would want them to know that we are okay and that our relationship is okay, and that there is nothing that they could do or didn't do, or whatever it may be that could have that. I would have wished they would have done something different. When I finally had a big surgery at 17, my mom didn't want me to have it. She was so scared. She was like we have done this, I am, we've waited this long. Let's just wait a couple more years, right? She's so scared. And I had to look at her and I had to be like mom, what else? What are we working? What are we working for? What have we done other than to do this right now?
Speaker 4:And then there were complications, and so then she was like I told you stuff. I told you stuff, you know, and I was like I'm ready. I was ready, I was ready for those complications, I was ready for the trouble, and it was my decision. And I was ready because of you and because you told me that we were going to do it and we were going to be okay. Now she had to handle it because I was knocked out, so it was kind of her problem. But there was nobody that I would have entrusted more than that woman. And and then moving forward now there is nobody in the world that I trust more than my own parents, because they've never lied to me, they have never done anything that wasn't short of amazing. And so down to you know, do you think that I should take this path or that path, or do you think you know I would be good in this career or whatever? When we have these conversations, I really trust the words that come out of their mouth because they why wouldn't I?
Speaker 4:Yeah, right right, and I would want them to know that I love them very much and that I trust them and that they're freaking heroes. Yeah, well, that got me on, then look at you guys sorry, uh, who wants to plan a girl's trip? Let's, yeah right, I love that. I listen. Ashley's kids are my girls. I. I think that your kids are going to be my girls too, and it'll be.
Speaker 1:It'll be really fun, for sure, but maybe the last, oh wow okay, that was really really um, thank you for saying that, because I could tell, like ash, Ashley and I are like I was kind of like don't look at Ashley too much, right.
Speaker 3:I'm over here like just sobbing.
Speaker 1:I knew she was here.
Speaker 3:Quietly, but I you know, yeah, sorry, we're both, can you?
Speaker 1:tell like look at us. We're like tripping over our mouths right now.
Speaker 3:I know, I know, oh, my gosh, you really needed to hear that.
Speaker 4:I think that you have. I mean, you hold so much, you've held this much and you're going to I mean me saying this means nothing. You're going to wake up tomorrow and do the same exact thing that you're doing right now, but we can go back and watch this. You go day to day and you hold on way more and I tell Ashley this all the time. I don't remember anything. You hold on way more and I tell Ashley this all the time. I don't remember anything. I don't. They drugged me so much.
Speaker 2:I don't remember anything whether or not that's good or bad, like there are straight up holes in my childhood.
Speaker 4:I don't know, I think it's great, it's fine. I don't, and my mom's, like you, don't remember when they no, I don't remember when they did that it's fine, and it certainly made me into a very strong person and I'm very happy to have those blanks sometimes. Yeah, because it's it's perfectly fine. So don't worry your girls, they will not, they won't remember, or or at least maybe it's.
Speaker 1:Even I'm almost hearing that and I'm like because I I get hung up on a lot on that a lot. I'm like, no, I don't expect Emery to be like I remember when you took me back and you held me while they put the mask on, like I don't expect her to have those memories, but to hold on to emotions is more like what? Like I would kind of I'll just be like, torture myself with, like is this you know extreme experience, this PTSD that I torture myself with? Like is this you know extreme experience, this PTSD that I see in her, like how is this going to affect her? And I really appreciate you sharing with us.
Speaker 1:You're like, yeah, like I was an anxious kid, but I you also showed like it didn't, like that's not how you define your life. I'm an anxious person who is skeptical of everyone and everything. Like I don't get that from you at all. It's just a part of your development process and somehow you just made that feel really normal for me in a in a positive way. I appreciate that. And even you just talking about hey, mom and dad, like I trust you. You're a confidant for me in all areas of my life because in loving me with honesty. That strengthens my trust in you Showing once again you guys don't just talk about medical. Your relationship is probably, I assume, covered everything from when you can date, when you can't date, who you can date, when you can go do things, when you can't curfew, you know, sneaking things, trying things, boundaries. I assume all of those things still happened and your relationship with your parents, like you said, is not defined by the medical aspect. That's just some of the colors on your pages.
Speaker 4:It's definitely given us a foundation, I think, which is great. We own a business together. Now, actually, I live very close to them, too close, but I live close, Okay. For example, they were both at my house earlier today. I was like get out get out.
Speaker 3:But no, I love them very, very much.
Speaker 4:I think one thing with chronically ill children and parents is that you get to experience life's little miracles, right, you get to be excited when you wake up in the morning and your kid's watching Bluey this morning and not vomiting, you're like score.
Speaker 4:And I still have that mentality, like I love waking up in the morning and making coffee for my family and I love that I get to do those teeny, tiny little things and nobody else in this world gets to experience life like that. Nobody gets to be excited about, you know, every little mundane thing Cause we should be, but we are always looking at bigger picture. But when you have an experience where you're like I don't know if my child's going to be able to do these little things, so I'm going to love that they get to do what they can do, or one day they did get to do these little things, I get so excited that I can cook dinner, because I can stand at the stove and cook dinner Like that's, that's a huge feat, and so that's one thing that I never would have had. So there's a foundation that my parents created that it's like let's just be excited. Let's be really excited about absolutely everything that we can do. Every single trip we take is amazing. My wedding was a big day.
Speaker 4:It was a really beautiful day. Oh, thank you. Thank you, um, it was a big day, not necessarily. I mean not my husband was there or whatever. Uh, I love you.
Speaker 3:Oh yeah.
Speaker 4:Ashley knows he's whatever. Um, but it was like we made it, we made it. And I got to have whatever I wanted that day and it was amazing, and it was more that it was like we didn't know. We didn't know. So now we get to dance and have an amazing time and now we know. So that was really great. I just gratitude.
Speaker 1:I just absolutely I think that's that's the unexpected theme for me of today's talk. Attitude from you was weaved so consistently throughout everything you shared with us, and it would have been so easy to assume that that would not be there right and yet I think it's stronger in you than most oh yeah.
Speaker 4:well, I think that experiences obviously guide you into who you are, but, like our, you know 10 points is that there's always hope, and one of the things of always having hope kind of have to look at the little stuff and be hopeful about the little stuff too, because they're just as important and nobody else gets to experience these little tiny hopeful things.
Speaker 2:Yeah.
Speaker 3:And appreciate it Like you do, you know, I think it's just, I think we all do yeah and appreciate it Like you do, you know, I think it's just, I think we all do.
Speaker 1:Yeah, now I'm hoping that my daughter is so much like you.
Speaker 3:I'm telling you it's. I told you she was amazing and I loved her so much, and now you can see why for yourself she will be because you guys care.
Speaker 4:That's all my parents did with care. They just loved and cared. It was. It's not complicated. And that's when I talked to my mom and dad, I was like you know what was the big secret? And dad's like, what big secret? Like I did you the same. I did the other kids, you know. I just I just loved them. We had resources and we continued to use whatever resources we needed to, you know, but my parents loved me just as much as you love your girls.
Speaker 3:Yeah, like Ashlyn, like you always remind me and you remind our, like listeners and social media, like our first job is to love our kids and this is great.
Speaker 2:You are capable, you are equipped and you are are not alone. Together, we can do hard things for our children, if this episode connected with you and you want to hear more be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. And, last but not least, if you know of someone who could benefit from this podcast, please share this podcast. Please share we're Hope it Bears.
