Mama of the Wild Crew Podcast
Mama of the Wild Crew Podcast
Hosted by Alexis Schmoker – wife, mama of two, nurse, and Jesus lover. This podcast is all about embracing the beautiful chaos of motherhood, finding joy in the messy moments, and leaning into faith through it all. Whether you're navigating sleepless nights, toddler tantrums, or the everyday miracles of raising little ones, you're not alone. Join Alexis as she shares real-life stories, heartfelt conversations, and encouragement to help mamas everywhere find grace, laughter, and purpose in the wild adventure of motherhood.
Let’s find the joy in the chaos—together!
Mama of the Wild Crew Podcast
When Faith Meets the Impossible: A Mother's Fight to Save Her Child- A Conversation with Madison Cantrell
Madison Cantrell's world changed forever when her infant son Asher suddenly struggled to breathe one morning at just two months old. What followed was an intense medical journey leading to a diagnosis that only 60 people worldwide share – Spinal Muscular Atrophy with Respiratory Distress (SMARD), a progressive neuromuscular disease with a devastating prognosis.
With remarkable clarity and vulnerability, Maddy walks us through the day-to-day reality of fighting for her son's life – from those first terrifying moments in the emergency room to the gut-wrenching weeks of watching her baby intubated in the PICU. When genetic testing finally provided answers, she was told her son had just two years to live.
But Maddy and her husband, Trent, refused to accept this outcome. Through a series of what can only be described as divine connections, she discovered an experimental gene therapy in clinical trials.
Throughout our conversation, Maddy's faith shines as her anchor. As a licensed professional counselor herself, she offers profound insights into processing trauma while parenting a medically complex child. She articulates beautifully how both fear and faith require believing in something unseen – but faith offers hope when medical science reaches its limits.
This episode will move you to tears and inspire you simultaneously. Whether you're navigating your own medical challenges with a child or simply need perspective on what truly matters, Maddy’s story reminds us of the extraordinary strength within ordinary people when faced with impossible circumstances.
SmashSMARD:
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It would mean the world to me if you would like, subscribe leave a review and/or share with a friend if you enjoyed this episode! Please find me on Instagram, tag me, comment, or DM me. Let me know what you enjoyed and what you’d like to hear next. I love hearing from you!
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XO, Alexis Schmoker
Mama of the Wild Crew
📸: A heartfelt thank you to Jordan Allen of Cr00ked Teeth Photography for capturing this stunning cover photo.
Welcome to Mama of the Wild Crew podcast, the podcast where we embrace the messy, wild, beautiful journey of motherhood together. I'm your host, alexa Schmoker, mama of two beautiful kiddos, wife, nurse and lover of Jesus. Motherhood is full of hard moments, unexpected chaos and those days where you just really don't have it all together. But in the midst of it all there is so much joy. On this podcast, we're diving into the real, honest conversations about motherhood the challenges, the triumphs and everything in between. We'll hear the stories of incredible moms from all walks of life, share wisdom, laughter and let's be real probably a few tears, and we're going to discover how to embrace the joy in this chaos.
Speaker 1:So, whether you're rocking a baby to sleep, folding that never-ending pile of laundry or sneaking away for a quiet moment with your coffee, welcome Mama. You're not alone here. Hit, subscribe and join me on this wild adventure of motherhood. I can't wait to do this journey with you. Hey guys, today on the Mama of the Wild Crew podcast, we have a truly inspiring guest, miss Maddie Cantrell. Maddie is a loving mother of two beautiful children, a devoted wife and a licensed professional counselor. She lives her life with unwavering faith in Jesus, pursuing him with a heart full of blind trust and beauty. As a mother, she would go to the ends of the earth for her children, showing what true love and dedication looks like. So please join me in welcoming the incredible Maddie Cantrell to the podcast.
Speaker 2:That was beautiful.
Speaker 1:Thank you.
Speaker 2:Thank you, hey, maddie what a good way to introduce me.
Speaker 1:Yes, Tell us a little bit about yourself.
Speaker 2:I can't say anything better than that. No, my head's big um, but yeah I. I love that. You said I would go to the ends of the earth for my kids because, I would. I've seen it in this summer when I had to beg the world, in the social media world, to get my son a gene therapy that's in phase one clinical trial, like not even approved by the FDA yeah.
Speaker 2:And like I went to bat for him and he got it, is I would. I would go to the end of the earth for my kids, you know. So I love that you said that. I know that I'm already going to cry, guys, I'm already going to cry this episode?
Speaker 1:I am. I was never a crier before I had kids.
Speaker 2:Like my hands are clean, I'm going to cry. They take it in. They take it out of you. And now.
Speaker 1:I'm just going to cry. So just a warning, guys, maddie and I have kind of known each other like for a little bit mutually, like our husbands coach together, but you know how guys are. He would be like oh, there's this basketball guy that his wife is pregnant to and I think that you guys would be friends and I'm like oh, awesome, like what is his?
Speaker 2:name.
Speaker 1:I don't know, I don't know. And I'm like, oh okay, like what is her name? I don't know, I don't know. I'm like, well, when's her baby due? Is it a boy or a girl? Not sure, not sure. And even one time we were at a basketball game and I saw your I think I met your husband and I might've just had crew or I was still pregnant.
Speaker 1:I can't remember and I was like, is your wife here? And I think you were like feeding Rosie or something and it was crazy and we had to leave and then I thought like I missed our meet cute, but this is our meet cute now. I know.
Speaker 2:Oh, my goodness Well tell us about you and Trent and your kiddos. So me and Trent met at Northeastern state university, um University, back in 2017. Crazy, that's so long ago, almost 10 years ago, and we he was actually the first person I ever met there, which is so crazy because I was dating, actually, my high school boyfriend, and we were both being sure in both athletes. He played basketball and I was a cheerleader at NSU and so they made like freshmen come up during the summer before school started to get like a physical through the university, Like they wanted to make sure you're healthy throughout the university. And so I walk in and I'm with two friends that were cheerleaders.
Speaker 2:We're both freshmen. We're all freshmen because me and Trent are the same age and I look and I'm like, oh, that guy looks lonely, he must be a football player. Let's go sit by him. So we go sit by him. He's so shy, there's like three cheerleaders talking to him. He's like scared, we're all scared and we all sit by him. We started talking and then we got his name and whatnot. I didn't think anything of it because I had a boyfriend that I was still dating from high school, but nothing of it.
Speaker 2:Well, so fast forward to when I cheered for basketball games. There's my friend. No, I forgot his name by then. Of course, there's my friend. Fast forward to sophomore year of college. I broke up with my high school boyfriend at the end of freshman year. He had to go, so note on that I was at this point. So the end of sophomore year, toward the end, like spring semester, um, you have a class together, some sort of psychology class. I can't remember what it was, but I was like my friend and I, and we don't end up sitting by each other at first.
Speaker 2:Um, he just come in late every day, every day roll out of bed and just like go into class, which is crazy to me because I'm like fully ready, right and so it wasn't even early morning, by the way, it was like 11 and you're prepared, girly and I'm already talking about this.
Speaker 1:Yes, you're on it.
Speaker 2:I'm like ready for the day and he's.
Speaker 1:I've already worked out.
Speaker 2:I've already gotten lunch, like he's like because it's 1 pm and you's just getting out of bed, and so I was like oh, my friend, so it's, that's funny. It's actually funny, cause we didn't sit by each other, but then I guess the classroom had to move to a different classroom, okay, and while we moved, he sat by me.
Speaker 1:Oh, I know, isn't that crazy, that is crazy.
Speaker 2:And so we sit by each other and I was like this guy is hilarious, so I'm, you know we're both single, whatever this guy's funny, oh my god, this guy loves jesus too, and it's like a catch, like fun, you know I know, yeah great, I didn't know you're this great when I first met you. Yeah, and so that's by april, we're by May. We go to this discipleship program through Northeastern State and we spend the whole summer together in Destin, florida, and I know it was so fun Was that Kaleo?
Speaker 1:Did you go, Kaleo? No, I was supposed to go with OU and then I tore my labrum and had to have shoulder surgery. I was signed up and everything ready to go. I did my fundraising are you?
Speaker 2:I was ready to be there.
Speaker 1:Yes, with sumo yes with oh, you, I love it yeah, that's so crazy yeah, I had to have surgery and I was just like I got one around with my little sling all summer. I couldn't go oh.
Speaker 2:I know.
Speaker 1:I'll see another must meet.
Speaker 2:Cute from us, no it was super fun though. Yeah, because you're young and you're freshly dating, it's so fun, so fun you're going to seaside, like on the weekends, it's so fun and you like have to have a job there yeah, you work for a little bit.
Speaker 1:Yeah, I was a waitress learn how to like disciple to other people, right like out on the beach, and share your faith.
Speaker 2:Go. You learn how to share your faith. You learn how to study the Bible. That's so cool. Everything, they cover everything. It's so great. Wow Met some of my best friends there Okay.
Speaker 1:Yeah, so if you have college kids, here you go.
Speaker 2:Stumo. Yes, they go to a thing called Kaleo. It's almost like maybe at every college.
Speaker 1:I hope by now I feel like it because my sister went to Oklahoma state and I feel like she talked about it as well.
Speaker 2:Yeah, but it was definitely at. Ou. Yeah, yeah, okay, it's a great one. And so we're in Destin having fun, and then by that October we're engaged. I know, oh my goodness.
Speaker 2:That October you knew, oh, I knew, yeah, there was a moment when we first started dating. This is knew, yeah, there was a moment when we first started dating. This is when we're still at and we weren't at Clio yet, we're still in college. And the first time I ever hung out with him alone, like in my dorm, and that night I was like, oh my God, it was such an overwhelming, like from the Lord feeling of that's your husband.
Speaker 1:Yeah, we weren't even dating, you just knew. Okay, I joke because I tell Jordan the same thing, and I told you. We just recorded a podcast a few days ago too, and we talked about this because right off the bat before, we had like kind of known each other. Same situation I had a high school boyfriend we met through my high. My high school boyfriend played on his soccer team and that's why I met him. So you know, and it was a bad relationship. But now I think back and I'm like oh well, thank God for it, thank God, thank you, god, like. Like. Oh well, thank god for it. Thank god, thank you, god, like.
Speaker 1:Because I mean, it took me a while to like realize why I went through that, but here we go right but, yeah, same thing like, and then we had kind of talked a little bit on tinder and then we went um, like the first time we were supposed to hang out.
Speaker 1:He showed up late, of course, because he had a soccer game and we were at Hop Jam the Mayfest thing, yeah. And so I was waiting for him to get there and I was telling everyone like, oh, I'm just waiting for my husband, Like he's on his way, He'll be here soon. Like, yeah, the whole time and I'm like, oh, I'm waiting for my boyfriend. I was telling people that. So whenever he got there, I was like, oh, yes, this is him. Like don't say anything, Stop, I'm embarrassed. And then I like always knew that I loved him, Like just from the get-go, Don't you love that? Yes, and he was, you know, a little slower to come around, Even though I think he felt it too.
Speaker 1:But maybe just yeah, guys know, they know too. Okay, so you're in your dorm and you have this overwhelming feeling, you know overwhelming peace too. Yes, yes, just that piece, that inner peace.
Speaker 2:Yeah, and I was like this is it, this is the guy for me, and he felt the same. So, um yeah, I got engaged in October and we were married by that next July. Oh did you guys get? Married here. Yep, we got married here in Tulsa Okay.
Speaker 1:Cool and then okay. So you guys were married how long before you had Rosie?
Speaker 2:Three years before we had Rosie. That's a good time. Yeah, it was Fun.
Speaker 1:Yeah. So you guys kind of got to get settled and then Started our careers, started your careers.
Speaker 2:I finished my well, I was almost finished my master's and then I got pregnant with Rosie, but I ended, yeah, when she was like one or whatever. That's awesome, yeah, yeah you figure it out.
Speaker 1:So you figure it out, girl. Yeah, you do, you really do Okay. Add on to your life, and so you have two awesome kids. Yes, you have got Asher, who is just turned one. He has one cute cookie at his birthday party. That was cute. And then Rosie is three and a half.
Speaker 2:Mm get into that. We're gonna do a question that I ask all the moms that come on here. Yeah, mine's so cringe, okay. So hit me with a recent mom. Fail, this is like a major. This is a major one. Okay, it's so cringy, I nursed her way too long. Okay, I'm excited. I'm not even gonna tell you how long I nursed her. Way too long, is she?
Speaker 1:still nursing.
Speaker 2:No, oh my God, not that long. Not that long, that'd be kind of gross, okay, but long Like until she was along, okay, I got you. So Trent's basketball team got asked to go to some tournament in Orlando and Rosie was like one and soie was like one and so I was like god, that'd be fun if we went to orlando.
Speaker 1:We stopped by disney and stuff and family trip, yeah, hey, with sports you gotta loop it. Yeah. Family trips whenever, yes you can?
Speaker 2:yes, yeah, so like fun, it's gonna be like a what flight? Two hour flight to orlando, yeah it's gonna be really chill.
Speaker 1:Well, that's when southwest crashed that one year like everything shut down, the computer stopped, it crashed yes, we were um in california when that happened and we we couldn't fly out for three days, that's exactly, yep yeah so we literally get there.
Speaker 2:It crashes, yeah. So there's like still games to be had and they didn't want. They were like we're gonna go ahead and go because the seniors want to go, blah, blah. So we take a charter bus to orlando from dallas, texas. Yes, the charter bus was what? 15, 16 hours with a one-year-old and a ton of high school boys, a ton of high school boys.
Speaker 1:Oh, ma'am, it was awful.
Speaker 2:No, ma'am so she's overtired and overstimulated. So it's like midnight at this point. I'm trying to nurse her to sleep, like, go to sleep on a charter bus, no car seat, nothing. I mean it was so dangerous, yeah, with all those boys. And she bites me, oh no, and I scream and I go, ow, I go, don't bite me. And I scream on the bus and it woke everyone up.
Speaker 2:It woke everyone up bus, and it woke everyone up. It woke everyone, all the boys up, the coaches up, and they're like what's wrong? And I was like, oh my god, she just bit me while she was nursing, like oops, it was, it was terrible.
Speaker 1:Oh, and they still talk about it I and you know that was probably a good introduction, though, yeah, to those boys, because they probably had no idea maybe some of these boys' wives will nurse one day. Yes, and they'll be like well one time. I doubt it. Coach's wife that is a good one it's so cringy.
Speaker 2:I was so embarrassed because she was old and I it was but they don't know that.
Speaker 1:They don't know. No, they don't know.
Speaker 2:Yeah, I don't know that as a high school girl even I'm not a nurse.
Speaker 1:So and I mean, is there? A rule not really. There's not a rule.
Speaker 2:You just do whatever you want so they still talk about it and it's so embarrassing I'm like shut up was that with?
Speaker 1:okay, so where he's? So where he's at San Serenso? No, he's at Glenpole now. Glenpole now, okay, close, okay, nice From Broken Arrow.
Speaker 2:So he was at. We were at Broken Arrow when this happened. Okay, Okay, go, tigers, he's at Broken Arrow for four years Go, tigers Go to remember that. It's so embarrassing. They still bring it up. I'm sure they do. You go remember when you screamed and I go. Will you guys shut up? It's the other coaches that do it, oh so embarrassing Not the boys, of course they had no idea.
Speaker 1:That is funny, that's a good one. Okay, so I did not know you were a licensed professional counselor until we kind of got into this. Okay, so you have put your career on hold to be present with Asher, your son. Can you share more about your calling to therapy, how you knew this was your path and your passion for trauma and women's issues, and what has your journey looked like for you? And then also, how has this season stepping away shaped your perspective on how you see your role evolving in the future?
Speaker 2:That's a great question. So I was actually, you know, in college I make you declare a major. I was doing speech path and I thought, lord, this is not what I'm supposed to be doing. I don't have even have a interest in what I declared. So I remember I was walking back from the library at NSU and it's almost like a vision or something came over me and it was in fifth grade. I would help my little girlfriends with issues and I remember one of my friends goes you could be, you'd be a great counselor. But that little memory like popped in my head just randomly.
Speaker 2:Have you ever told her. No, I haven't ever told her.
Speaker 1:Oh my goodness, I should tell her You're going to have to call her on the way home.
Speaker 2:I, yeah, tell her yeah, because it was her little face and everything it was. I don't have a lot of members in fifth grade. I'll be honest, my brain is crazy. But I was like, oh my god, how'd that pop in my head? And I said, lord, I think I'm meant to be a counselor. I didn't know what that looked like, but I declared psychology and, you know, got my master's in licensed professional counseling and it's a christian, it's like a theology degree from oru.
Speaker 2:But um so, basically, like a christian counselor, knew that was my calling and, in undergrad, thank god that I'm doing what I'm meant to be doing and, yeah, I work at oklahoma. Christian counseling had to stop working due to my son, um, so I took maternity leave this time last year so I was going to go back in like may.
Speaker 2:He was born in february and literally the week before I was supposed to go back to work, um, he got sick yeah so he got sick and I haven't yet to return, but I will one day return, um, but I knew that was my path and um, love trauma, which is so crazy because I was fortunate enough to have a really good childhood. I have minimal trauma for myself, um, but I've been with my therapist since 2019, just working on data, you know random stuff that pop up and whatnot but, um, now, when I go back to work, when I will return one day, yes, I will return one day. And, lord, I have such a different perspective on trauma because of what I've been through. Right.
Speaker 2:And I think that's going to help a lot more women. Um, cause I I see I see pretty much just women. You know I'll see men, of course, if they want to, but my focus really wants to be on women's trauma. So, um, that's kind of what the journey's been, and stepping away I mean that was. It was sad. I I've never been one to work a lot. Um, for example, with wrote, when Rosie was growing up, I worked two or three days a week. I never worked a lot anyway, but I still worked, you know, and I fed into my calling and I was really happy and loved my clients, loved all my clients. So definitely, stepping away has been impactful in good ways and bad ways. There's another place I'd rather be and I want to be as healthy as I can when I return after I deal with all of my trauma. Right, I got to be healthy for these clients. So it's because you're just gonna take time and wait until Asher's more stable as well right, and there's just something like so special being home with your kids too.
Speaker 1:Yeah, it's not easy, just like we were talking before it's the hardest talking before. It's the hardest job ever, girl. It's the hardest job. Yeah, you're balancing a ton of stuff at one time, yeah, and kind of like we were talking earlier too like it's one that you not to say that you want to leave your kids. You guys know what I'm talking about.
Speaker 1:It's a break girl, it's just it's one that, yeah, being a stay at home-home mom, like it's one that you can't, you don't go home from, like it's constant, like at night it's still going.
Speaker 2:You're still on duty I'm still on call.
Speaker 1:You're still on call, so it's. I mean, everything has its heart for sure, absolutely Okay. So now let's dive in a little bit to Asher. So I know Asher's journey has been nothing short of miraculous being diagnosed with an ultra-rare neuromuscular disease, facing life-threatening challenges and becoming the youngest and only the seventh person in the entire world to receive this life-changing gene therapy.
Speaker 1:All right, maddie, take us back to the very beginning. How did you first realize something was wrong and what did the process look like? Getting his diagnosis and, and like you said, going to the ends of the earth to get his shot?
Speaker 2:it was a shot right intrathecal. It's fine, okay, tell us yeah so it was may 17th, just. It was actually trans last day of school at glenpole, like before summer break, and I woke up and he was nursing and I thought something's weird, because he would just arch his little I know they can't see me but arch his little head back and like super uncomfortable. I was like this is weird, what's happening with this kid and how old is he? At this point he's two and a half months old baby.
Speaker 2:Yeah, he's a baby. And so I remember I have that outlet sock yes, that I have for Rosemary and so I stuck that sucker on. His oxygen was 78. Oh, my goodness, I know which is not good. It's supposed to be 100, guys, yes. And so I was like oh God, and so I called I think I called a pediatrician Trent was still at home because it was early morning and they go oh, that's not good. Um, hold on, let me like, send you to a nurse. And I get a hold of the nurse. And nurse goes you need to take him to the ER. It's not good. So I take him down the road to the ER. I rip my three-year-old out of the bed, right Be like, come on, man, go to the doctor so scary. And um, go to the oxygen. He looks good, whatever. And they go we're gonna send you to saint francis children just to monitor him and whatnot. Okay, no big deal.
Speaker 1:Well, it was a big deal right it was, but looking back, that was not a big deal from everything that you've gone through now yeah.
Speaker 2:So we get to st francis. They're trying all these antibiotics. So fast forward two weeks. Nothing's helping this kid. We've been there two weeks now. Nothing's helping him. They've switched up the antibiotics. He's still needing oxygen. He's still acting like he's gasping for air. It was just crazy. And so we get sit down to the PICU, the pediatric ICU. We get sit down there at the end of May now and they try a Ram Camula, which is like a high flow oxygen where it's like it sounds like terrifying.
Speaker 1:Yeah.
Speaker 2:So, he's Darth Vader sound.
Speaker 1:Yes.
Speaker 2:So he's freaking out, cause I would freak out. Yeah. Okay, he's freaking out and they go it's not helping, this is a helping, we're going to have to intubate him, yep. So for guy, I didn't know what intubation was, so I'll explain it. It's pretty much like you're put into a coma, and so they put these tubes on his tiny. He was eight pounds.
Speaker 1:So they're putting these tubes on his tiny throat into into his lungs and it's.
Speaker 2:He's on a ventilator and so it's blowing air into his lungs and breathing for him.
Speaker 1:And then you're on fentanyl, uh, per set, or what's that drug?
Speaker 2:the prophethol, yeah, yeah so like two hard sedation and paralytic yeah, yes, on all these drugs, just put to sleep and he was in. He was intubated for three weeks, wow, yeah, yeah. So this brings us to like the middle of june at this point. Okay, so they run a million tests. Everything looks fine. Oh, his brains, you know, his brain looks fine. His lungs are cleared now wow yeah, like his heart.
Speaker 2:they checked everything. Saint francis is the best hospital, you guys, they, they were so amazing to us. So they check everything, everything comes back fine. And then they come to us one day this is probably probably like second week in june at this point and they said well, we don't know what's wrong, the last thing we can do is genetic test. Genetic testing okay, I guess it's like people's like last resort, I guess, because there's obviously something wrong. Right, because they tried to extubate them, take the tubes out three times and he just couldn't tolerate. He failed all three times. Okay, that's wrong.
Speaker 1:That's so scary.
Speaker 2:So horrifying, horrifying.
Speaker 1:And you still have a three-year-old.
Speaker 2:Yeah At home. Two months short of three yes At home. Goodness, Like away from us and I was just telling Alexis, like our daughter's never been away from us, so that was horrendous for her as well to be forced to separate because kids aren't allowed in the PICU and I didn't want her to be scarred by seeing Asher anyway. And so they come to us one day and they go he's going to need a trach, and I go what the crap's a trach?
Speaker 2:And they go a tracheostomy is when we cut through his trachea and put in the high flow, the ventilation through the neck and I'm like, oh my God, they go. It's not good for him to be on all these drugs this long. It made sense, yeah, and so we still don't know what's wrong with them during this. So it's like a big, a huge decision to trick somebody. And so I'm in the shower that night and trent immediately was like trent's my husband. He immediately was like, um, yeah, let's do it, because this will be awake, and like you can talk to him and get on the road to recovery or whatnot.
Speaker 2:Yeah and um, I was kind of on the fence and then I got in the shower and I was like, oh lord, because we have, we had lived there so long. By then I was like lord, am I supposed to, are we supposed to trach him?
Speaker 2:and I just felt peace come over my whole body yeah you know, like the water, like it was just a peace over me. I was like, okay, he's supposed to have a trach. We say yes, and they trach him, like that weekend or something, it was fast, yeah. So they trach him. And the same day he was trached they genetic test him, they took his blood, they took our blood and they sent it off. So during this time we're just asking for a prayer and whatnot, to try to figure out what's wrong with asher. And I think about two weeks after that, so he was diagnosed on June 20th. We got his diagnosis. Okay, you know my chart.
Speaker 2:Yes, so did it come up in there it came up on my chart before the doctors came in. Oh, I'm so sorry. I woke up to Trent bawling his eyes out.
Speaker 1:Yeah, cause, did you guys kind of know what what it meant? Okay, tell everyone what it's called.
Speaker 2:Yes, oh yeah, it's called SMARD, but it stands for Spinal Muscular Atrophy with Respiratory Distress. So there's about 60 cases in the whole world. That's crazy. So rare, ultra rare, ultra rare. So a lot of people have heard of SMA. It's Spinal Muscular Atrophy, that's all it is. There's like different types, like five types of that, but this is a rare form of that.
Speaker 1:With the respiratory.
Speaker 2:With the respiratory stress comes first.
Speaker 1:Okay, which is what he showed.
Speaker 2:Which is why he randomly stopped being able to breathe. Yeah. Wow, I know. So it came back. Yeah, it came back and Trent was bawling and I thought I woke up. Out there he died. What's? Yeah, yeah, oh, my god. He died in the middle of the night. How did I sleep through that?
Speaker 2:you know, yeah, yeah, I mean worst case scenario of course, and he goes, he has it, and I knew, I just knew, yeah, I said he has that. So the doctors come in and explain and then, um, this is so crazy, that same day, within probably within two hours of the diagnosis, I thought, thought, okay, what do I do? There's no research on it, because it's so rare, there's no research on it.
Speaker 1:What in the world? So you couldn't even hit it with a Google Mm-mm. Isn't that crazy? That is crazy, and so.
Speaker 2:I opened Facebook because I had joined a trach mom support group and I thought well, Lord, maybe there's one for smart, which is a long shot. There's one, Really. So I joined it. Yeah.
Speaker 2:I asked to join it they accept me or whatever and I said, hey, my son was diagnosed this morning. Um, just looking for support. And then a woman calls me. Her name is Brittany Steinman. She's like the founder of the only organization for smart. Yeah, she founded it. So she calls me and she goes Meg, there's a clinical trial going on right now for, uh, um, uh, gene therapy. Wow. So, and.
Speaker 1:I didn't know. Well, I didn't know, what gene therapy was either, and you're like explain further please. What does that mean? I know like what's experimental mean. Yeah, you're like is that, is that? Okay, I know, can I do that?
Speaker 2:Yeah, so science. So this is me trying to be medical, just bear with me.
Speaker 1:There's clinical trials, you guys kind of know that a clinical trial is like in.
Speaker 2:Grey's Anatomy. Yeah, whenever Meredith is trying to run in.
Speaker 2:Alzheimer's clinical trial that's what it is. Okay, yeah, but this is phase one, but this is the very beginning. Yeah, yes, this is like we. This could kill Asher. We have no idea how this kid's going to react to this. Um, I'm like I don't care, because when you Google smart, the lifespan's two years. It's like ALS, but for kids, not ALS it kind of kills you fast. Yeah, so the SMARD will kill you fast. Terrible, it's a terrible disease and I thought, lord, he's going to die anyway. So I'm going to try to get him into this clinical trial. So we immediately, the day he's diagnosed, june 20th, we contact Nationwide. It's in Columbus, ohio, at the Children's Hospital in Columbus, and they immediately tell us no, because he's trached. Children's hospital in Columbus. And they immediately tell us no, because he's tricked. They go, we want, we have one spot left and we want it to a baby who's has no symptoms.
Speaker 1:You're not going to find a baby with no symptoms, why would? They Well, because they don't just test babies for this.
Speaker 2:No, and then they randomly stopped breathing.
Speaker 1:Right. So they're going to have a symptomatic to know that they have it Exactly stop breathing, right?
Speaker 2:so they're gonna have a symptomatic to know that they have it exactly okay. So the actors already tricked. They declined us whatever and I thought, no, if this is the only thing out there for my baby, he's getting it. And so that we were mourning and grieving, of course, because the lifespan and it's just detrimental. Worst day ever yeah and so we're grieving.
Speaker 2:And then that morning I couldn't sleep at night. So that morning, like 5 am, I took to facebook and instagram and I just said, hey, we got a diagnosis. Um, it's horrible. Um, can we get like on the news and start please, everyone share this, so I can get it out there and hopefully make them reconsider right okay, so we freaking blow up.
Speaker 2:Yeah, we're on fox 23 news on six several times um, and so we're on the news everywhere and people did such a good job of um sharing and one of my best friends, maddie, she made a tick-tock and this amount of time, but she did stuff like that and really try to raise awareness. And exactly seven days later, actually, aaron Conrad from news on six got an email and it said okay, we don't, we still don't want Asher in the trial, we don't want his information, we don't care how this kid does, but we'll give him a compassion use.
Speaker 1:What is that?
Speaker 2:I know that's a thing in this medical world, I guess, where, if they don't want you in the trial or whatever, they just say here's a compassion use, we'll give it to you, but we don't care what happens.
Speaker 1:Oh, so they gave you a dose, but they're not going to use it for their data.
Speaker 2:Correct. We did have a sign, something saying if they changed their mind and want information, we have to give it. Yeah. Which I'm okay with. I'll do that. Yeah, you're like, and if it, could help another baby.
Speaker 1:Absolutely yeah, so we did sign that, but also I know I'm going to get them.
Speaker 2:I know yeah, so they sent it to us like the next day. Wow. It's like a little vial. It's a little syringe of medicine, but it's so. His, his, his gene is IGH M P B two gene. That's the gene that he has mutated. All right, I know. So it's like a 20 million copies of that gene.
Speaker 1:What in the world I know, and it's they 20 million copies of that gene what in the world I know?
Speaker 2:And they're encoded inside an emptied out virus. What in the world? Is that not crazy?
Speaker 1:Science is crazy. Science is crazy, and so you're like just learning by fire of all of this?
Speaker 2:What's a trach? What's intubation? What's going on? Oh my goodness. What's gene therapy? Yeah, that is crazy. So we get it, they send the drug, we get it, and Asher gets it like two weeks later. Wow. So he was dosed on July 12th of last year. Wow. The gene therapy and he had no bad symptoms. He still hasn't had any bad symptoms at all.
Speaker 1:Okay, and so that gene therapy. Tell us a little bit about what that does.
Speaker 2:Yeah, because it so there's this much information on it, they don't know what's going to happen, right? But the goal of it is to stop the progression because you know, like ALS is so aggressive and SMART is so aggressive, it's supposed to stop the progression. Okay, so it's supposed to halt, because we are seeing an actual decline in the hospital every week, like quickly. It's a terrible disease, alexis, to watch a baby die. Yeah, I can't imagine. Yeah, disease, alexis to watch her baby die.
Speaker 1:Yeah, I can't imagine. Yeah, I'm just watching them not move, and I literally cannot imagine.
Speaker 2:So it's supposed to stop the progression, and then astra has to rebuild all the crap he's lost wow.
Speaker 1:So since he's had it, have you guys seen more decline or just progress? That's crazy, because now I see pictures in his little thing.
Speaker 2:It's so cute oh he gets a lot of therapy. We get PT twice a week speech. We have another MRI therapist that we see once a week, so he's doing a lot of working out and we just had we just actually had a six month meeting with all these therapists together and they've all agreed that he's only gotten stronger.
Speaker 1:That is so I know, and he should not be getting strong, girl.
Speaker 2:We were seeing him decline every week. It was he could move and all of a sudden his toes are stopped. He could kick and then all of a sudden his legs don't work oh my goodness, it's just this progressive thing just kills your motor neurons that is so crazy. I know who would have known that a thing like this is out here.
Speaker 1:No, Like you don't. Yeah, why would you have known? So since then, have you had contact with any other moms or anything that oh?
Speaker 2:absolutely girl.
Speaker 1:It's just a network.
Speaker 2:It's such a short group too. Yeah, like a small group that were I text several moms every single week. Well, thank goodness, you guys have each other and thank goodness for that mom.
Speaker 1:You said her name was Brittany yeah, that called you and she created it. She funded over a million dollars for this gene, and so what is her story? What? What makes her so connected to this she's, she's so outstanding um such an amazing mom yeah like a powerful mom.
Speaker 2:Yeah, loves her, you're a powerful mom. So she raised over a million dollars or maybe over two million a lot of money. Yeah. For a place to create this. Yeah. And then fund. She funded, she funded everything. She's paying for the doctor's salary, Like she what I know, because her son had it. I was going to say Okay, and it's actually been it's been a year and a in a couple days that her sons passed away. Oh, and how old was he?
Speaker 1:he was eight seven, right, my goodness, wow. Well, thank you to her for yeah thank god for her. I mean goodness, and just that god put her in your path. And I can't imagine, because she fought hard for asher too, yeah, to get it. Had you not had gotten it this would have been a different outcome.
Speaker 2:Oh, thousand percent, wow, he would not be doing well right now and so you guys, how long were you guys in the hospital?
Speaker 1:75 days.
Speaker 2:That's a long time, yep. So we got the gene therapy july 12th, and then we had to transition to a home event home ventilator versus the hospital one. That took forever. He didn't like it. But you have to change a million things and so we end up leaving. I always pray. I was like lord, please let us leave sometime in july.
Speaker 1:We left july 31st he's like you can ask, but don't be too specific that is crazy.
Speaker 2:We left the last day of july and then we haven't been back.
Speaker 1:Thank you, lord we have a ton of appointments, but we don't have him in back wow, I know that is crazy, and because so is he going to be on the trach forever. Do you guys know?
Speaker 2:in my heart, I don't. I do not believe he'll be on the trach forever. I think he'll be like a, like a three, four, five year old, though, before he gets it out, but I do not think he's on one of the lowest pressures you can be on, wow. So as long as they're healthy, he, he just needs the positive pressure. Positive pressure because he's just expanded, yeah so we can give him a good enough breath. Yeah, oxygenate well and to be growing and happy and stuff. Wow crazy. Yeah, it doesn't.
Speaker 1:It's so complex, but I know you've posted like a few times about his steroids and stuff oh my god, so is he off of those or he was off of those today. Today, today today was oh, my goodness, that was a journey, because you've had just complications from the steroids.
Speaker 2:It's been awful, it's been awful. The stupid steroids. Steroids are great for like a week and then not not a year. Yeah, not this long. They start to really affect you negatively yeah so we're finally off medicine, and now he just got to keep getting stronger. I think when I pray I you know, I went to or you were crazy, so I pray for like miraculous healings, and I've seen so many healings and stuff.
Speaker 2:So I'm like lord, I know you've given him the gene therapy and that's a form of healing, but I want you to heal him faster, yeah, you know. But I really think the Lord's doing something in this waiting period, cause I, I, I just I don't know what it is yet, lord, and I get frustrated, probably twice a week where I'm impatient with him and question him and honestly get mad at him sometimes too. If Asher should not doing well, come like what the why is this a disease? Why is this is a thing? What did I do wrong to desert? You know? You're human.
Speaker 2:Yeah, you're human body.
Speaker 1:That's all these things yeah, yeah, that's part of being human and I think, like with God, to, not to, you know, speak for him, but I think that he wants you to come to him, like with your petition, bring it to him. No, you know, speak for him, but I think that he wants you to come to him, like with your petition, bring it to him. Yeah, you know, bring your anxieties and your fears and cast it on him, because, I mean, that's what you do to your, your heaven, you're your earthly father, right? Like you're upset, you go to him. You're upset, you go to him. Like that's what he can handle it, he can handle it. Bring it to him. He's like bring it on, girl. I know it stinks like this is a fair.
Speaker 2:He cries with me like he's yeah, he's. I may not get the answer that I want, but I know for a fact he's with me because look at this, what the crap's kind of story is this right? And even when I process to be my story, even when I process with my therapist. I see I do two hour sessions every week with my therapist every sunday and at the end of when I process, I think, think, is this? This feels so surreal, like I lived that. I had to beg for someone to save my kid.
Speaker 1:Right and you're like are you not looking at the? Same kid that I'm looking at.
Speaker 2:I think you don't see my son worthy as being saved, you know, and so it seems so surreal that this is my life, alexis.
Speaker 1:Right. Here you are.
Speaker 2:But here I am.
Speaker 1:Going to the end of the earth, and I mean making a way for other moms too, and being a support for other moms, and cannot wait to help somebody one day you know and asher too.
Speaker 1:I'm sure, goodness, because I'm a little man, I know he's so cute too. He is, and I mean he just like you sent you always post pictures and stuff and I feel like you're so open with talking about it and like being relatable to other moms too. But he's just so cute with them little cheeks. They're huge steroid cheeks, steroid cheeks, I know, but they're cute man okay. So like cognitively, yeah is he, he's?
Speaker 2:progressing and he's normal. What's crazy about this disease? It does not affect your, your brain. Yes, you're not cognitively impaired at all.
Speaker 1:Thank God, so he's with us.
Speaker 2:If you saw him, he'll smile. He's with it.
Speaker 1:Yeah Well, I mean he posts the videos he's looking at sister playing with Trent and doing all the things. That's cute.
Speaker 2:So you guys do some. Miss Rachel, oh, I got in the house like no to her.
Speaker 1:I'm like, oh my God, yeah, I feel like Ms Rachel really like carried us through that. Ms Rachel, she is. I mean, she really has done a lot for all of us. I think she is Ms Rachel, if you're out there, listen, listen, I love you. Thank you for all that you do for everyone we love. And have you seen God's hand in healing? We kind of covered that too, okay, so how would you say that this has affected you and Trent? I mean, I can't even imagine going through hospitalizations.
Speaker 1:You guys were just flirting it up at college and now you have a medically ill. You're fighting for your kid's life. What did that look like, and how are you guys still processing?
Speaker 2:that, lord Jesus. It affected everything for me and Trent. What was I going to say? He never left us, trent never left us. We were there with Asher every single day, all day. We never left Asher. So in a way, me and Trent got to spend a lot of time together, you know, by being in the hospital. But it wasn't fun, was stressful time oh my god girl so stressful and and sad and and grieving and all this stuff. But I would say now and me and Trent actually talked about this last night we're like man for what we've been through.
Speaker 2:We're pretty, we're doing pretty dang good yeah like, by God's grace, there's times where it's almost like we can be more vulnerable, quicker with each other. Right, you know you don't have time to waste. No, like, let's just get to it. I'm like Trent today was so hard and we can just start crying together. Yeah, so that there's a level of intimacy that has grown between us from this Cause, when you go through hard things with somebody, oh yeah, oh, my Lord, does it not bind you in a different way of like, yeah, you guys are trauma bonded, yeah, trauma bonded, yes, and so we're like the intimacy is quicker to to reach Right when we're more honest with one another. But we also have no time. We have not been on a date in over a year. Yeah.
Speaker 2:Because, oh my God, to leave as year? Yeah, because, oh my god, to leave asher. I, I don't. Trent's the only one that knows what to do. And then our nurse, brooklyn, is the only one who I can leave asher with. Yeah, it's no longer finding a baby, so you have to find a nurse.
Speaker 1:Yeah, I can't imagine because even I mean I get mom guilt and I don't have those concerns, so I can't even imagine too just like that aspect of. I mean I'm sure you feel guilt leaving him I do when you shouldn't.
Speaker 2:I know, isn't that crazy.
Speaker 1:But yeah, you just have to be able to trust someone. It's hard to put trust in someone like that.
Speaker 2:Absolutely yeah. So it's changed my and Trent's relationship tremendously, in good ways and bad ways. We don't get to spend a lot of quality time together, but when we do spend our time together, um, it's really great and we've really drawn close to one another. It's gonna come back around. It'll come back around. Even that the moms I talk to with their babies have smart. They just say it gets better. They go, maddie, it gets better. Yeah, and their, their kids, are not doing the best, but I'm like if they're able to say that, then yeah, I gotta trust that, that it gets to me a better and easier right it will.
Speaker 1:And how does Rosie cope with everything? I can't imagine just. I mean, I guess she doesn't know any different, right? Um, but how does she, how do you like explain things to her? And still give her attention, kind of walk me through that absolutely, girl.
Speaker 2:That's a daily juggle I have to do yeah I try to get one-on-one time with her every single day and most of the time I can be successful in that. And then some days I'm like girlfriend, you gotta just watch the tv. I'm about to like I didn't sleep last night or whatever right. But most of the time I really try to get one-on-one with her. She goes to almost every doctor's appointment with us and we have one almost every day. So she's on the go with us. She has a doctor's kit. She thinks she's a doctor. Oh, that's cute. And this is just her life. Yeah, you know she's. You know God chose her to be. Asher's sister, yeah.
Speaker 2:So I think she's, she's, she's doing the best she can she? Also went to therapy with me a couple times so she can process things out with missing us this summer. Right, you know being away and she come to the hospital every day with us, but it's not like it's not being at home, right, yeah, and so she did her own little therapy with it so she wouldn't be so stressed out and stuff, and um, I think she's doing a great job. Now she's really just stepping to her role. Yeah.
Speaker 2:And she'll say I'm changing his trach and I'm suctioning him and all this stuff.
Speaker 1:So she's going to be a pulmonologist.
Speaker 2:She's going to be a doctor one day.
Speaker 1:Yes, yeah, wow, that is crazy.
Speaker 2:What if she?
Speaker 1:goes into, like this, gene research. Wouldn't you love that? That would be crazy. I would love that for her. Okay, we're going to check back in 20 years.
Speaker 5:Yeah, we'll shoot back in a couple years and let's see how it is, let's see what her?
Speaker 1:major is? That would be crazy. Oh my goodness.
Speaker 2:She could do it.
Speaker 1:She's smart, yeah, she is. I mean, she's always making you dinner, Always making me carrot stew or dinner that she makes you, and it's like she's a servant. Applesauce, a carrot, like in different spots, like a Cheeto. She's like here you go, Okay. So what advice would you have for families that are navigating challenges having, um you know, children with serious medical conditions, but also having a healthy sibling?
Speaker 2:That's a great question, my Lord. Just lean, lean into it and be sad. Allow yourself to be sad and grieve and then allow yourself to be happy. And really my advice would be just where's your hope? Where do you put your hope into? Because without the Lord I'd be in a mental hospital. I'm not kidding at all. I'd be in a mental hospital not doing well at all.
Speaker 2:So where's your hope in this? And ask for help, my Lord, like without my smart moms that I talk to every single day, like you have to have support. Where's your hope? And then just let yourself grieve, because all, thank God, I'm a therapist too, cause I know this crap right now, telling it and and acting it, yeah, and doing it, or two different things, right, but thank God, I have knowledge of what grieving looks like and what trauma looks like, and I can give that to myself. So, yeah, that'd be my advice is probably just grieve when you can seek support and then turn to the lord if you don't got the lord and you're battling your child's so terminally ill yeah, how do you go through?
Speaker 2:how do you go through? That yeah because you would just die well, and just like you said there's.
Speaker 1:that doesn't mean that it's all like roses all the time, like you have times where you guys are doing rounds with God.
Speaker 2:Yes, it happened over the weekend. Actually, I think it was Saturday. I was home alone. You know, when you're home alone, you feel like you could cry. You know you're like I'm by myself. I can like cry, let it out, because my kid's not screaming at me. You know, right, and I just cried almost all day Saturday and I'm like Lord, this is my baby, right, why didn't you make me ill, right? Yeah, hurt me. Yeah, don't hurt my baby, right.
Speaker 1:Oh, my goodness, I know, I can't even like, I can't even imagine, because we like go through an ear infection. That's how I was growing up for and you feel, feel it, you feel it so deep and it's like please just take this pain from my baby, like they're a baby and I can't even imagine, even just when you were talking about, like the tests, like he went through multiple tests everything I mean a covid swab will send me through the roof he said about seven spinal taps. No.
Speaker 2:Yes, he has a million. He said everything you can think about girl the camera down the throat, CTs, MRIs, x-rays, surgeries. He said everything. The kids had everything.
Speaker 1:Yeah, oh, and he's just like smiling. He's just a happy baby. He doesn't know any different.
Speaker 2:He doesn't know any different, that he doesn't know how to cry. That is so crazy, he doesn't even cry most of the time. That is crazy. You're the one crying. Oh yeah, I'm the one. Yeah, I'm the one taking it on. Yeah.
Speaker 1:You're like we're fine, oh man, and I mean we kind of just touched on this, but faith can be such a powerful force in lot of anxiety and just that you really had to bear like your own struggles and rely on your own strength, which I can relate to too. I had so much postpartum anxiety with crew and I said like into, well, yes.
Speaker 1:Um, but with Asher you've had no choice but to give it to the Lord. So with that, you know that trend going around. And it's like if I could meet my younger self for coffee, what would I say? So if you could look back and meet your younger self pre kids, even pre Rosie, what would you say?
Speaker 4:I just hug her, you know, yeah, yeah, it's hard because you just never expected this to happen to me, you know.
Speaker 2:That's why I tell her just to hang on. It's going to be a while, right? I mean literally yeah, hang on to Jesus and you'll get through it, because she hasn't, she'd have no idea what's about to come. Yeah, you know girl.
Speaker 2:So just hug her. Yeah, just give her grace so just hug her, yeah, just give her grace, give her hope, and just looking back before rosie, my lord, it seems like a treat. I mean, that seems like a fantasy land I could go jog when I want it, and like you know right, you know how it is before mother yeah, go to the bathroom. Oh, my god, you can do whatever. You can do whatever you want, yeah, and so fantasy land now, but it'll come back one day. It will.
Speaker 1:Yeah, and just like for the moms out there that are struggling with anxiety after a baby, what would you like, what advice would you give? Because I know, like with me, looking back now, that I have Wilder and granted, wilder is a different baby than crew crew was hard for me, same and I think, just like it'd be my first baby, I struggle with a lot of anxiety, like safety anxiety and a lot of like worst case scenario anxiety and like she gets in the car, there's something in me that just knows she's not going to make it to where she's going or like those thoughts debilitating, yes, those thoughts, and I mean now you just like have to get it in check, because you can't live that way, I guess.
Speaker 1:So what would you say like for advice?
Speaker 2:as your counselor. Counselor that's my as the. I would just say um, whatever you ignore, push away, it doesn't work. You have to face things or they don't go away. You have to go to therapy, you have to face things. So I would say, just to face it, almost like when we say declarations over ourselves. Right, you know, one thing I would say over Asher is he shall live and not die to declare the works of the lord like those declarations, even if I didn't feel that and believe that you're saying I'm still going to speak that yeah.
Speaker 2:And so just saying scripture over over, like your head, and being like no god does not give me a spirit of fear, you know, but a peace lovingness on mine, whatever. And so it's like's like um, making those declarations even if you don't believe them, because fear and faith, they both require you to believe in something that's not there. Right, absolutely.
Speaker 2:Yes, you're either going to believe fear or you're going to believe faith, so which one are you choosing? So which one are you going to choose girl? Cause they, you both, can't see them. Yeah, that one's made up in the corner, but so is faith that she's gonna live a long life, and she's healthy and perfect, right, right, they're both.
Speaker 2:You don't know for sure. But why? Why don't we believe the good one, right, and what the bible says over your baby? You know I have good plans for you. You know, plans to prosper. You're not to harm you, plans to give you hope in a future, you know. So it's like the word says this and the words alive, right, you know, right, wow, and it's gonna, yeah. Yeah, that's what we can believe, because both require us to believe in something we can't see. Yeah, that's what we're gonna believe.
Speaker 2:That's what we're gonna believe for our babies, yeah all four of our babies, all four of them.
Speaker 1:Goodness, yeah, because we have the two girls and then we both have the little boys. Oh, that is crazy. Okay, let's shift gears. Let's completely shift gears. Okay, let's talk coach's wife life. So we talked a little bit coach's wife already, with your breastfeeding. Okay, so, as a fellow coach's wife, it's the beginning of our soccer season, but you just ended basketball season. Good, for you, Thank God. Yes, Sometimes it can feel like you know single mom life.
Speaker 1:So shout out to those single moms because I don't know how you're doing it and you're crushing it, but may God be with you. May God be with you because um. I think I crumble. I struggle in the season sometimes, um, but with all that aside, with how hard it can be, we love it. And amidst the long hours and the crazy schedules, what's your favorite thing about being a coach's wife?
Speaker 2:Oh, it's such a good way to put it. It's hard, but it's so fun at the same time. Yeah, One of my favorite things about it is for one. I love sports. I've always done sports, my whole life. I cheered. I know people say cheering's not a sport. It is.
Speaker 1:It is a sport I couldn't cheer.
Speaker 2:It's a sport, so whatever. So I've been in sports my whole life, god I cheered from preschool to.
Speaker 2:All the way through college I ran track. I won state twice in high school for track. I love running and stuff what I used to. I can't run anymore, I have no time, um. So I love sports. So that makes it easy that I'm not like what's going on on the court. You know, you still put on your cheer outfit. It would not fit. It would not fit, it'd be a crop top, um. So I love what's going on the court. I love sports. My whole family loves sports. And then I love watching trent do what he's called to do.
Speaker 1:Yes, you know yeah, I do now you go yeah, it's so natural.
Speaker 2:Yes, you go out there and then you help those boys, and what I love that Trent does is he always says every year, no matter what the group of boys looks like, okay, I get you for four years of high school, you know. But I want you guys to be great men, great husbands, great fathers one day, great employees Like I. I want to fill those areas of your life and not just be your high school coach that you had for four years. Right, you know, I want to build these men to be good men. Yeah.
Speaker 2:So his accountability is high for his boys and several other things, so I love watching that. Yeah. Makes me super proud. Yeah, yeah that's awesome. Yeah, that's kind of like you I feel like.
Speaker 1:I feel like it's similar yeah, jordan kind of has like the same, I feel, like mentality. It's all about raising good men and so yeah, I mean and you know that from sports too like that's really where a lot of your character, yeah, like early years, has grown. So he does like this man up night which it's really cute where they have to like plan a whole date kind of thing, um, at the soccer field. Like he has an indoor court, soccer field thing futsal court is what it's called and so the boys are in charge of like planning this whole night. So in the past, like they've had a western night where they did two stepping lessons and they'll have to like ask a date and pick her up and bring her flowers and then they had to like order the food that was going to be served.
Speaker 1:And of course it's like not, you know, it's not how I would have personally done it, but and I just had to like, let it go because it was their thing, and Jordan was like, no, that's the point. It's like that it's their thing, you know so, but it's like the cutest thing. So I mean it goes so much further than learning how to play soccer, Absolutely Right, and so that's so cool. And then, just like your kids being there, I would say, is another part of my thing, isn't it?
Speaker 1:And then just like your kids being there, I would say, is another part of my thing, Like I love, yes, my kids growing up at the soccer field. It's just I'm sure you're the same way with the basketball, but I know that sometimes high school kids can get a bad, bad rap.
Speaker 2:They're sweet boys, though, right, I love high school kids. Aren't they funny? Yes, they're funny, they're sweet.
Speaker 1:They are so sweet and I've like had the best experience over. I mean we're like seven years in um the best experience like with all of them. So glad girl, I would absolutely. I would absolutely recommend it.
Speaker 1:You know, I know there are hard parts about seasons, hard, yes, and teacher life is hard sometimes but yeah, I think it's great. I would recommend Do it, okay. And so, maddie, for the listeners out there that want to know more about Asher's story and how to support you and your family and the other moms out there going through this disease and just different gene therapy how would they learn more about it, how would they connect with you and how can they support you?
Speaker 2:Yes, I'm on Facebook and Instagram just Madison Cantrell. There's an organization called Smash Smart. It's like I was telling Alexis is the only organization for Asher's disease. It's a great little website. It's so like to the point and specific, so that's a great place to be. And I just want people to also know if you're a medical mom, whatever that looks like, it does not have to be like a terminally ill like Asher's, but just like an autism, you know, and things that were your. You feel out of place. You know, you feel like you can't connect or relate to certain moms Like I understand yeah, I get that As't connect or relate to certain moms Like I understand, yeah, I get that.
Speaker 2:Yeah, Asher's immunocompromised. You can't be around a ton of kids. It's hard and it's isolating Right and figuring out social things and you know I'm walking around with all this medical equipment at all times he's connected to a machine. So if you're a medical mom and you're listening to this, reach out to me, because I'd like nothing else than just to be a sounding board or just an encouragement to you, wow.
Speaker 1:So that'd be great and I'll put your information in the show notes. But it's one D or two D, m a D, d, d, m a D, d. I S Cantrell, yeah, and then it's Smash S-M-A-R-D. Correct Dot org. Yep, okay, all right, guys, for everyone listening. I invite you to just take a moment.
Speaker 1:We're going to pray for Asher and the Cantrell family. Dear Heavenly Father, we come to you today with grateful hearts, lifting up Asher and his journey. Lord, we ask you for his continued healing over his tiny little body and that you strengthen him every day and surround him with your peace and protection. We pray for Maddie and Trent. That you fill them with unshakable faith, endurance and reassurance that you are always near In the midst of the challenges. Lord, we ask that you bring the moments of deep joy, laughter and rest. We also lift up sweet Rosie as well. May she always feel secure, loved and cherished as she walks alongside her little brother, just managing that big sister role like she does. Little doctor girl, father, thank you for always, always moving in their lives and for the miracles you have already done and those still to come. We trust in your goodness and your perfect plan and your unfailing love. Amen.
Speaker 1:Amen, girl, that's good. Amen, and to those listeners, thank you again so much for being a part of this conversation. If you want to follow Asher's journey, like we said, and support the Cantrell family, connect with Asher's diagnosis page at at smash S-M-A-S-H, smart S-M-A-R-Dorg, which I'll link in the show notes, and follow Maddie on Instagram and Facebook and reach out to her if you need to. Guys, I'm telling you she will be there for you. Until next time, remember to hold on to your faith, embrace the chaos and joy, and love fearlessly.
Speaker 1:Bye, bye, alexa Schmoker, and I hope you love this conversation and that it resonated with you. Thank you so much for opening up your circle and letting us in as we walk through this wild ride of motherhood together. Remember, in the chaos of motherhood, there's always joy to be found, so keep looking in those little moments that make it all worth it. Be sure to follow along on Instagram at mama of the wild crew underscore podcast. Please don't forget to like, subscribe and share our podcast. I'd love to hear from you, so comment, tag me, dm me, let me know what you think and let me know what you'd like to hear next. Mama, I am praying for you, I love you and I cannot wait to see you next time.
