Latest / The Mami Collective / How to Advocate for a Medically Complex Child and Trust Your Gut with Kellie Koziol

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How to Advocate for a Medically Complex Child and Trust Your Gut with Kellie Koziol · The Mami Collective

• Paulina: The Mommy Collective Mommy Dinner Plug series in Chicago is back on March 11th. It's a curated, intimate night, a real dinner with moms and women who are building, working, creating, and trying to do it all without losing themselves in the process. You'll walk in, get settled, and actually have an easy way to meet people. No awkward networking. No shouting over a crowded bar. No pretending you're fine when you're running on fumes. Just good conversation, good food, and the kind of connections that don't feel transactional. Seats are limited on purpose because the room matters. Grab your seat and head to themommycollective.com slash events. Welcome to The Mommy Collective. I'm Paulina Rowe, radio host, TV contributor, writer, and mom of one. This is where ambitious moms come to keep their identity intact while navigating motherhood. Here we talk about the real stuff, career. money, relationships, identity, and everything that gets messy in between. You won't find sugar coating or cliches. What you will find are unfiltered conversations, real resources, and proof that you don't have to lose yourself to be a good mom. The Mommy Collective is here to remind you, you can be ambitious, you can take up space, and you can thrive in motherhood and in everything else that makes you, you. Before we get into the episode, make sure you're following The Mommy Collective on Facebook, TikTok, and Instagram, and share this podcast with a mommy in your life who a little inspiration or just a reminder that she's killing it. Also, don't forget to sign up for our newsletter and leave us a review so we can keep showing up and reach every ambitious mom out there doing big things. Let's get into it. Mommy Collective, are here, Paulina Rowe, another episode. And today I have a very special guest joining me. have Kelly Koziel joining me, mom and wife to four girls. How are you today? I'm good. How are you? I'm good. I'm excited to chat with you. We've been trying to get this in the books for a minute and I'm so grateful you found the time for me. I think your episode today is going to be one hell of an episode. I do think a lot of moms are going to relate to you. And I think I'm truly like, first of all, very grateful and honored that you're here. you chat with me, our community as well. Motherhood is no similar path for anybody. It's a lot of ups and downs. And I definitely want to talk to you because I feel like in my perspective from what I've seen getting to know you is I think you're one of the strongest moms that I know. I know that. Thank you so much. I appreciate that so much. Seriously. I like think about you sometimes. It sounds so creepy. I'm just like, I hope Kelly's getting rest tonight. I really do. I swear to like I swear I've thought that before. I really hope she's having a good night tonight. I know. I just think of you often and I'm grateful that you're here to talk to us, tell your story and give moms a lot of hope, inspiration, and especially let them know they're not alone. Because I think that a lot of times that can be the case. Yes, absolutely. It's very, yeah, you feel that way sometimes, but there's a community out there. Absolutely. So I want to dive into you, if you don't mind, give us a little background about yourself, your family. Career wise, even before kids, I would love to know all about Kelly. Okay. Obviously I'm Kelly and I'm married to my husband, Scott. We were high school sweethearts and we were actually, so we've been married for eight years now and we have four daughters. My oldest daughter is Brinley and she's seven. And then my middle daughter is Vivian and she's five. And then we have our twin daughters, McKenna and Sienna and they're two and a half. We have like kids right away, kind of like Brinley was, she was. She was born the same month we celebrated our first year anniversary of marriage. And we always wanted that. I always wanted my whole thing. I want to be a mom. Like so bad. I was like, I just want to be a mom. And me and Scott have been together for literally forever. We actually got married on our nine year anniversary of dating. yeah. So we had the girls and I previously prior to having kids, I was a hairstylist. My husband works construction. Once the girls were born, I became a stable mom. I watch kids out of my house sometimes. In between when Brinley was born and Vivian was born and the twins were born, in the neighborhood I watch kids, whatever, but I'm basically at home. Right now, even with Makana and everything, I have a daycare on Tuesdays and Thursdays at home, but then primarily stay at home mom. And yeah, I don't know. We just wanted to get married, build a family, you know, the typical is what you plan for life. Absolutely. Absolutely. So Kelly, you share a lot of your family and your story on social. And I love that. I truly do because I feel like, again, you are, don't know whoever, like, you never know who you're speaking to, right? Or like, is residing. Who's gonna see it or, Right. Who this reaches. And I think, and I've actually met you, well, it's our first time really meeting, but I've known you for a minute. And especially because of a friend that we have that's our mutual friend, Sam. she, talked about you to me and I was like, have to get her on the podcast. love her. Yeah, no, she is the best. I gotta go see her. I'm like, these split ends are really bad. That's another story. She mentioned you a lot and we talked about you and I would love for you to share your story about your motherhood journey because it's something that you even said offline that you never think it happens to you until, you know, it does or you're in it and your experience on a certain day. even completely switched your motherhood experience and what you are going through with your family. I would love for you to open up to us and really share as much as you're comfortable with because again, I feel like it could really help a lot of families, moms listening. Okay. Yeah, no, absolutely. So I mean, we'll get into it. Basically, like I said, my oldest daughter is seven now, so I had her in 2018. Then my middle daughter was born in 2020. I always wanted three kids. My husband wanted, he always said three, two, but then after we had two, there were two under two, he kind of was like, we could be like, you know, done, we could be done, blah, blah, whatever. But then I was like, no, I don't feel complete. So we went for number three and I got pregnant right away. And it was funny though, because I was like, even my pregnancies, all of them were like completely normal and all that. I never even had like morning sickness or anything. But when I got pregnant with the twins, I was so sick. Like. so sick. I felt like I was dying. It was on my deathbed. I was like, ⁓ my god, how did I get away the last two pregnancies feeling 100 % healthy and fantastic? I was so sick. And my OB is our family OB. My sister used him and everyone. So we have a really close relationship. And I'll never forget the day when I went to go for that first ultrasound and they made check to make sure everything's okay. I'll never forget. It was a really snowy and rainy day. And my husband works construction. So he's usually off the week of Christmas and New Year's. And it was his first day back to work after the two week break. It was January 12th, I'll never forget. And my mom came in, who's also right today, and to watch Sprinley and Vivian. And my dad drove her in or whatever, because they live up North and we live in the Southern suburbs. And my mom was like, just to my dad, my mom's like, just drive Kelly to the appointment. Because my OB is like 40 minutes away and the weather was like really crappy. I... I'm like, yeah, can you just take me? He's like, I'll wait in the car or whatever. So I go in and like, again, typical appointment. My doctor comes in. He's like, I think I was just in actually before for like my yearly or whatever. And he was asking about kids and I was like, I don't know, like Scott wants to be done, but like, I don't feel complete. So when he walked in the room, he's like, why are you back? I was like, I'm back, I'm pregnant. And we were like laughing about it. And he's like, how are you feeling blah, blah, whatever. And I'm like, I'm so sick. And he made a joke and he's like, you better hope it's not a double or multiples. And I was like, oh, please like give me a break. my sister has twins. And I was like, no, there's like, it was never even a thought in my head. Like, I don't know, I didn't even think about it. Right. He's like, I'll cut. He's like, I'll catch back up with you in like 20 minutes because you know, you get the blood work and all this stuff, whatever. Well, sure enough, I go for the ultrasound and like I did the whole ultrasound. It was like 30 minutes and like at the last, I swear to God, like five minutes, we were finishing up and I'll never forget, I was like looking at the curtain next to me because I knew we were done. And the ultrasound tech goes, one second. And so they didn't process me. I'm like, what? And she's like, she looks at me and she's like, do you have multiples in your family? And I was like, why? It didn't even like click. Thinking back, I should have known where she was going. And I was like, why? And I guess like when she was like finishing up, we found another sack. And then she's like, well, you're having twins. And I was like, what? Well, I was like shaking like I have videos. I took my phone out and I started like recording things. The camera is just like this the whole time. So I was freaking out today. And I was like, oh my God, is this normal? Or am I taking this well?" And she's like, no, you're actually taking it really well. I'm like, am I? Because thinking back, she said I was thinking it great. I'm like, do I call my husband? What do I do? So I did call him, like laying on the table, and I call him. And again, he does construction. And he was like, it was raining and snowing that day. And he's like, And he's like, what? I'm like, I have to tell you something. And he's like six feet in a hole in the middle of the expressway. I'm like, there's two. And he's like, I can't hear him. There's two. He's like, I'll call you back. So calls me back after he gets out of the hole and everything and I'm like, yeah, so we're gonna four under four. And he's like, what? I'm like, there's twins. So then my OB came in and he like laughed and I'm like, you jinxed me. And they, cause they say like when you have multiples, I guess that like onsets a lot more like sickness feelings. Cause it's double the, what is it? H? Hormones or whatever. Yeah. see your whatever. it made sense why I was so sick. Cause I just thought I had the flu for like a month. But anyways, so that's how we found out. was like, thinking back, it was like so funny, but it was like such a hot mess. I remember like I walked, my dad drove, I I walked out to the car and he's like looking at me and he's like, what's wrong? Cause I was like crying. He's like, what's wrong? And I just like tossed the ultrasound over and he was like, look. And he's like, oh, I'm like, I'm like, what am I going to do? Like that's four under four. He's like, it's going to be fine. And then we went home. My mom was in the kitchen and she's like, how did it go? Me see the baby. And my dad's like, this way. And everyone's like, no, I'm like, mm hmm. It was just so funny. So that's how we found out there was two. then moving forward from that, I had a completely normal pregnancy. Everything was totally fine. Once you hit 20, so when you have multiples, even if you have a fine pregnancy, they have you see maternal fetal medicine once you hit 20 weeks just to watch you more closely. So my OB was 40 minutes away, like I said, but I was very lucky. We live right next, our neighborhood is five minutes from our local. suburban hospital, however you'd want to say that. So my MFM doctor, who you have to see all the time to like check on the babies was right in there. So very convenient. I guess that everything was good. Everything was fine. Once I hit 20 weeks, I I started being seen more frequently just to check on them. And that's kind since everything was so normal, it's kind of like, I basically went to my seven month appointment. And I think at that time I was being, I was either being seen weekly or bi-weekly. don't remember to watch them. And that more, so was June 1st, 2023. I went. I woke up that... Actually, this is the crazy part. So I had an appointment for 10 o'clock in the morning and I had a babysitter coming, like our regular babysitters, whatever. And I got a call the night before from the doctor's office and they were like, could you come in at eight? And I was like, totally. I'm like, but I know like our sitters are in college. So was like, I know they're in class at that point. So I would have to bring the girls. And mind you, at that point, Brandley and Vivian, Vivian turned three 10 days before her birthday, May 19th. So like she was... a baby in my opinion, like she was little. I'm sorry, Brinley was five, four, four, four, I think, right? I found you at four. I'm like, how many years ago? And they were, it was weird. And I was like, I said, I promise they're very well behaved, but they don't like having siblings at the appointments. It's a very, very tiny office up there. So they were like, let me call you back. I think they were trying to move around, seeing if someone else could come. I'm not quite sure what it was. And I was like, that's fine. I'm like, I could be there though, but I to bring the girls, but I promise they'll be They're so good, like whatever. So they ended up calling me back and we went to the eight o'clock appointment. So I wake up that morning again, everything was fine. And I was like packing up the car. Like I'll never forget June 1st. It was like the hottest, most humid day. So I was like packing up the double stroller. I got the girls in the car, everything's fine. And I get in the driver's seat and all of sudden I started like just like not feeling good. I got like a cramp in my left side, which this sounds like silly, but I always say this. ever like? as a kid or when you were in school, drink a bunch of water and then you run. Do ever get that cramp? I don't know if I'm a running cramp. I know exactly what you're talking about. I got that. I was like, is it because it's so humid? And mind you, even at that point, being 27 weeks, I was big. Big, big. Just with two being in there. So I'm in the car, sitting in the driveway, and I'm like, well, I just put the stroller in, I got the girls buckled, it's hot. This is weird, but it's fine. But ended up going back in the house and I was looking for a water bottle to bring with me. I couldn't find one, so I literally just filled up cup of water and I ran back out to the car. Didn't want to be late. I chugged the water and I drive five minutes to the hospital. But en route there, I started getting this burning sensation on my arm. And I was flicking my hand, my wrist kind of, or my arm, I guess, like what I'm showing you right now. And I was kind of freaking out. I'm like, this is weird. But I kept convincing myself it's just hot. We were rushing this morning, whatever. So we pull into the hospital, I pull out the stroller, I get them situated, I go in and literally where my MFM doctor's office is, it's actually right next to my daughter's pediatrician. Like I do the same block all the time. I've there a million times. So I'm like at the elevator, and we clicked the off button and like, this is actually kind of funny. There was like a vending machine, but I was like getting dizzy. So like I let the elevator open and close and like I got like a Coke from the vending machine and I had, I'm like, is that my blood sugar low? And it was funny because when we got up there, I told the nurses this and they're like, you have a blood sugar problem? I'm like, no. Like in my head, I was like, why did I feel that way? You know, so I was just thinking like maybe I was sweating and I don't know. So we go up there, whatever I sit down, I check in, I'm still not feeling great. And I'm like kind of looking at the receptionist and there was a bunch of people in there and it's tiny. And I'm not like one to like, complain often honest to God, but like I really did not feel good. Like there was like cramping happening in my side, my arm was burning, my ears started ringing. I was like dizzy. So I go to the receptionist and I'm like, I don't feel good. So she brought me immediately back and that's when everything just changed. Basically they put you on the table, they do an ultrasound. No one was panicking or anything yet, but they started the ultrasound and I swear, I feel like my timeframes are probably off because just chaos and it's been like two and a half years now. But it was definitely less than five minutes. I remember the ultrasound talk that was like checking everything had, she was training someone. I feel so bad for whoever that girl was because she like witnessed. It was so quick. She just like looked at me and she's like, where's your husband? And I mean, it's Thursday. It was a Thursday, Thursday morning at this 8 15. Scott's at work. So I'm like, why? And she's like, hold on one second. And she goes and gets the doctor and they come in with a wheelchair. And I'm like, what's going on? And then they're like, we need to contact your OB, which he actually just did an overnight shift. He was delivering babies all night at the hospital. Cause we, I deliver out of the hospital. And I later found out like he literally had just walked in the door from like his night shift and he was pouring his cup of coffee when he got paged. And I'm very thankful. Cause I, I've heard from like friends, sometimes you'll just get like a random doctor ever. He literally like jumped back in his car and drove right back to the hospital when he knew what was going on. Basically what they said was I was having a placenta, abruption, and hemorrhaging. And I had a volleyball-sized hematoma behind baby A, which that part of my body that I said was crampingly bad, that's where she was, and it bursted or busted. So I was internally bleeding, and then her, basically when you look it up, it's like the placenta's falling off, and I'm not a doctor. So this is how Ivan explained to it, and I know I'm gonna butcher it. But the placenta basically is like falling off of the wall, but then there was a hematoma too that like, erupted and I was like internally bleeding and that's why I was having all of that. Everything that was happening. So after that, shit just hit the fan. I'm calling my husband. He was an hour north. He was up here where I'm right now, visiting my mom today. He was an hour and half or an hour north. Everyone's at work. I mean, my parents are retired, but they also are an hour and a half away. My sister is a teacher in the suburb next to us and I was just calling everyone. And everyone's like, no, like, because they didn't want to scare me. I was scared already, but they were like, first, they're saying you're delivering right now. Then they're like, when I started panicking, they're like, well, we're going to monitor you when doctor gets here and when your doctor gets here, blah, blah. So I'm like calling everyone. And my husband's even like, there's just no, it's 27 weeks. You know what I mean? Like they're going to do something else. We're not delivering. Well, finally, I'll never forget, like I'm in the elevator and like the nurse like ripped the phone out of my hand and was like, your wife's delivering right now. And that's when I knew, like they were trying to protect me from panicking, but everyone was like, well, what are we doing? Like, are we... It just blew up. So basically, my point was 8.15 AM and the twins were born at 9.22 AM. If that just makes like... My husband missed the entire C-section. He was stuck on traffic on 294. It was horrible. Cause I was like, I had to sign things and they wanted to put me to sleep. Cause I had a C-section obviously, was emergency or crash C-section. My other daughters are obviously like three and four at the time. They were just screaming bloody murder. Like mommy, they're cutting a whole tie. They were like cutting my clothes off and they're like screaming bloody murder. They had every single person at the hospital. had HR down there. There was like 60 people in everywhere. And I'm like, what am I doing? think I'm, like I said, my sister's a teacher and it was actually the last day of school. She left and she got there, but they didn't allow her to be in the OR with me. Plus my other girls. So I'm like trying to decide like. I'm like, no, I don't need you. Go with Brinley and Vivian. Like, what the hell is happening? My brother-in-law is a nurse at Christ. He came. I don't even know what happened. They pumped so much. I'll never forget. I was like shaking so bad. And my sister Brin in the room. Finally, she got there. And I remember I was like, why am I shaking? I'm like trying to sign stuff. My signature couldn't even sign. So ended up having me just like thumb print things. And I'm like, why am I shaking? And my sister's like, it's the medication. And I remember I put like my arms up. I'm like, I don't even have an IV yet. But it was like the nurse like, it's adrenaline. So. It just blew up so quickly. So I delivered the babies and my husband was not there. He did end up walking in, like, I don't know if I him out and they ended up having, they ended up taking my like fallopian tubes. then I, like, I still have my uterus, but they took my fallopian tubes. And I just remember like him walking in and it was so quiet. He's like, you know, when you have a baby, the baby's supposed to cry. They were so tiny. They were like one pound, 15 ounces. I think Sienna was one pound 15 ounces and McKenna was like one pound four ounces. And I'm probably off on the ounces, but neither of them were like two actual pounds. And it was just so quiet. And then Scott came running in the OR, they let him in, whatever. And there's so many people. And all of sudden we started hearing like, it's almost like meows, because they're so tiny. Like their cries sounded like, it reminded me of like a cat meowing or a kitten. So I was like, okay, they're breathing. And the nurses were great. They were like... know, modern medicine, it's going to be okay. Like 27 weeks is better than 24 weeks. You know, like they're trying to like make me calm down because I was clearly freaking out. And then I'll be honestly after that, it was like such a blur. They put me back. They put me up in recovery and we just me and Sky are sitting there looking at each other and we're like, what just happened? You know, I'm like trying to fill them in on the morning. And then the NICU doctor, she like, yeah, she runs the NICU, she came up and when she, as soon as she walked in, She did not look happy. And she was like, something's wrong with baby B. Cause we didn't have, okay, mind you also 27 weeks, we had like a list of names that I didn't like pick out official names. And we have other girls too. So like, there's only four, know, I'm like, we, we've all girls. So I'm like, what names? So they're doing baby A, baby B. She basically comes in and she's like, baby B is just like not doing well right now. And they basically told me I had to go down and say goodbye to her. which baby B is actually McKenna. who's with us now. really like they pulled the gurney out and like they're bringing me down. I mean, it's kind of like what and like my parents were finally there and they were in like this. It wasn't like a waiting room. They somehow got to a part of the hospital where like they're they're getting to the waiting room, but they passed us kind of my friends like what is going on? And like baby V's not going to make it. And I just remember my dad was like what like it just was such chaos. And like they didn't even stop for me to talk. It was like they're coming this way. I'm going that way in the stretcher like it just hot mess. So we go down there and I got into the NICU and it's a small NICU at that hospital. It was such chaos. Like I remember seeing like other families visiting their kids and everyone's just like looking like what is going on right now. So I go down there and they told me to say goodbye and all this stuff. And I don't remember. I feel like I blacked out kind of, I don't know what happened. Next thing I remember I was back, I was in a room finally and they came up and they said that she, baby B needs to be transported to the local children's hospital. And we're like, okay. So we signed all that and that was probably at like 11 a.m. She didn't end up getting transferred, transported over until like 6 p.m. So my husband left and went with baby B, which is now McKenna, and I stayed with baby A, Sienna. Obviously I can't, I was inpatient. So he went downtown with his brother. I stayed here. My parents took the girls home. I just remember I was just like in the hospital, like what just happened? Like there's, I feel like my whole family is like spread everywhere and like. They're supposed to be on my stomach still. Like this is insane. Long story short, I got discharged like two days later and I went to visit McKenna for the... So we named them McKenna and Sienna. And I went to visit McKenna for the first time and like everything was okay, honestly. Like they actually, I forgot to say, the reason for the transfer, they said it was a heart problem. But when the... Children's Hospital got there, they were reviewing all the tests and they actually said there wasn't a heart problem. But at that point, we already suffered brain bleeds, which is something that is very common with premature babies. So they ended up just, that's why they ended up taking her because she already had a brain bleed. So they're like, let's get her to a more like sufficient place. So yeah, so we get there and then I go three days later and visit with her, everything's okay. It was kind of like a waiting game. They talk about something when you have twins prematurely, there's something called like a honeymoon stage where the babies don't even realize that they're out of the mom yet. So like they could be doing like super well because they haven't like processed that they're no longer in you. And that's exactly what happened because they were almost doing like too good. And then like on day three, McKenna specifically was not. And that's when like all of our problems started. So McKenna suffered a level When they caught it, it was a level two brain bleed. And then the day of my discharge, I'll never forget, I was, you you sign all the paperwork when you're leaving to go home or whatever. A nurse had come in to sign everything and the phone rang in the hospital room. And I answered it and it was the NICU downstairs for Sienna, baby A. And they were telling me that now she has a bilateral level two brain bleed. And I remember like the nurse walked in and she was like reading my, I started crying and she just like walked back out. because I was like, this is not happening. They're like, you need to come down and we know you're getting discharged, but before you leave, come down. So I'm like, okay. So we do all of that. And like I said, everything was kind of a blur, but that's kind of how this all started at the end of the day, because there's just so much information. We kind of ended up suffering with bilateral level four brain bleeds, and that's the worst you can have. Sienna, had level two brain bleeds, and then they did go to level four. Sienna ended up passing away on day six of life. She was doing great. They actually... called over to the Children's Hospital to come get her as well. And it was the same exact transport team that came. And I'll just never forget, I was pumping in the little family room down there by the NICU. And they came in, it was all the same people. And you know that look people give you, of? They just looked like sorrow, kind of. And I was like, what? And they're like, we need to talk. And I was like, okay, what's up? And they were like, we'll take her. But they said, I'll never forget, they said. It sounds like very blunt, but I actually respected it because I just needed to know what is actually going on. Basically the main doctor on the transport team said, we don't know if she's going to make it there. She's probably going to like die in the sky. I'll never forget that, die in the sky. And he's like, and we will perform CPR. We'll do all the things like to get her there, but she's so fragile. She's so little. So we talked obviously for more than just that. was like 40 minutes and then me and Scott were talking. And we, at that point we ended up. making the decision to just put her on comfort care at the hospital, the suburban hospital where I delivered. And so at that, basically she, they give us time with her, you know, they give you time. And then when you are ready, they basically just excavate. But she also, think I had mentioned she before, I to say, she also, she developed neck where her intestines perforated. That was the big reason why they were transferring her. I forgot to mention that on here. That was what called that for that other hospital to come get her. And that's why they said they didn't know if she was going make it because of the neck and the intestines. So we made the decision. We did what we had to do. But that specific day was the day that we found out that McKenna needed her first brain surgery. So like it was just like the worst situation because we're like, oh, Sienna's passing away. We need to go to a meeting an hour and a half away into the city to discuss brain surgery for like such a fragile child, which they didn't even know if they can perform it yet because she was so petite still. So like me and Scott always say like, do we feel like we... Like I have guilt of like not spending enough time with Sienna, but then I like had to go sign paperwork for brain surgery and then McKenna wasn't doing well. Like you're just pulled and tugged in so many different directions. And like, don't think there's a right way to do it. No, it was just so much. That's the only way I can think so much. So we did the comfort care. Shane did it passing away. We literally, I can never forget. So like when you leave a hospital with a baby, they give you like a basket. And we were like kind of close with the security guard at the hospital at that point. So we didn't talk, but like he saw us so frequently just that one week. And I'll forget, like we're coming up the elevator and it was so busy in the lobby. And I'm like, Scott's wheeling down the wheelchair and like, was holding the basket and like the security guard like looked at me and you can tell like, he probably was wondering like what was up. Cause we were there so much and my family was there so much. Like the look you get when you're like walking out with like that basket, like everyone in the hospital knows what the basket is and it sucked. it sucked. like strong. But Scott wheeled me through the lobby and then he wants to go get the car and I was sitting in the double door area because it was so hot and I busted out crying. And I was like, how is this happening? How does this happen? You just think it's never going to happen to you? And I'm like, OK, my daughter just passed away. My other one needs brain surgery. I have literal babies at home. I'm sorry, in my opinion, they're three and four. They're babies. It was just a hot mess. So that's how it all began. Since that day, McKenna has had five brain surgeries. She is diagnosed now with spastic quadriplegic dystonic cerebral palsy, which means that her chest area and her neck is low tone, which means she doesn't have muscle, ⁓ just very low. She's droopy and all this. But then her fore extremities, her legs and her arms are high tone. So they are stiff as a board. And then she also has the diagnosis of She's blind and she's deaf. We know that she hears something though, because like her sisters are crazy and like that's like, she laughs when they're like running around the house. So we don't know, we think she may hear tones. We don't know if she hears like all of our words, but we know she hears something like I said, but we think it's like tones. Like she loves when the girls like pounding their feet or like running around. And then she has the diagnosis of hydrocephalus. So now she has a VP shunt. We went through multiple shunts and reservoirs in hopes that it would like clean up, clear up the brain, it doesn't clear up the brain bleed, but like release the pressure. But unfortunately her body just never adapted to any of it. So we had to make the decision to do the VP shunt, which it's basically like a little machine. I don't know how explain it. Like in her head, you can like see a bump on her head and there's a tube that goes from the little thing in her head behind her ear, all the way into her belly. And it... Like her body doesn't process cerebral fluid like our body does. They say like a healthy adult or healthy adult at least is supposed to process one soda can a day of cerebral fluid. With McKenna's brain damage and swallowing everything, her body just can't do it. So that tube releases it into like her belly basically, because her brain can't do it herself. So we have to watch that all the time. So she has that diagnosis as well. And then with all the damage that she's had, she also has brain stem damage. So like in her notes, it says like severe narrowing. Her brainstem is also damaged, which your brainstem controls your entire body. So she has a very severe feeding intolerance. And she's on 24 seven feeds all day long just to get like the volume. Cause she, like we have a nutritionist that comes to the house and like she has a feeding, she's a G tube. Sorry, I meant to say that. But since she vomits so frequently, it's so difficult to get the feeds in and we have to just do them so slow and then she vomits. So we have, it just takes forever. So she eats all day and all night, unfortunately, and it's just very uncomfortable for her because like the vomiting and it's a lot. We ended up spending, we kind of spent seven months in the children's hospital. We got discharged and we kind of did have like a off situation with a discharge. She didn't have like a full, we knew she had cerebral palsy when she was discharged, but we didn't know the extent of it. I had a feeling, but no one was saying anything. But we got discharged with like, You're supposed to go home with a child like this, nursing and equipment. We had to charge with no nursing, no medical equipment besides her G2 pump. So the first 10 months of her being home was really hard. I was just trying to do it all and I was like, this is crazy. And she was so, she's in such a better place now than she was then. It was so bad back then. Even her, we have a nurse now and like our home nurse is like, I don't know how you did those first 10 months. I'm like me either. I think it was like fight or flight mode, you know, like what am I supposed to do with my daughter? But we just weren't discharged with the proper equipment. I I started, I started thinking like we weren't supposed to have it. Like was I like, I felt like guilty, like, ⁓ I'm like assumed. They told me in the NICU that we were going to and then discharge happened. And literally I remember like the elevator doors closing and my husband and I looked at each other and we're like, okay. we go. I mean, they trained us obviously, but I'm like, I'm responsible. This is scary. She's on a lot of medications, very heavy-duty drugs and these things. So I just did it obviously those 10 months, but I would just cry in the doctor's office every day. We still to this day have doctor's appointments, at least weekly now, multiple. But back then we had them multiple a day. So they finally got me connected with the correct resources. And she's on a waiver program now for severely disabled children, which that's how we have nursing now. We finally have at home the proper equipment. have oxygen, we have a pulse ox, we have a suction machine, we have a CPT vest that shakes her up to get her secretions out, which helps with the vomiting, all the things. We joke, we literally say all the time, how did we survive those first 10 months? And we actually didn't end up getting the medical equipment until March of last year. were over a year. When nursing started, they actually didn't even feel comfortable starting with us because we didn't have the proper equipment. And obviously that's a liability. So that was very helpful. But yeah, so that's like the story in regards to like, you know, the birth and everything, pregnancy was totally normal. It just happens. And that's like the crazy part. Like we were talking before we got on, like, if you asked me three years ago, if this could ever be me, no way. Like, and I think that's, I mean, that's normal. Like no mother would ever assume that. We had the most normal life. And not saying that this is not normal. This is just our new normal. But we had the most normal life and now my life is just, I mean, it's literally McKenna, which is fine. Like I love her to death. That's something I want to say too. Like obviously as moms, we all love our kids the same. When you have like a child that has like such high needs, it's like a different kind of love. Like, like me and Scott always joke and we always say like, McKenna is our forever baby. Cause she's never gonna like, you know, be able to like take care of herself or anything, but no one thinks it's gonna happen to them. And like I said to you before we got on, June 1st, 2023, I woke up that morning, I was taking my kids to the splash pad an hour later. It supposed be a 20 minute ultrasound. Our life, in our family's lives, we're very thankful to have a good support system and friends as well, but it was a light switch and it forever, ever changed. Now my stay at home mom life is we have OT, PT, speech, vision, hearing, nutrition, developmental therapy. All of them come at least once a week. Some of them come two times a week. Doctors appointments. weekly if not daily. Zoom meetings, it's so crazy. Scott and I were talking the other night and I was like, what did I used to do with my time? Honestly, I was like, what did I do all day? Brinn have ever so little. I'm like, what did we do? He's like, you went on play dates, you did this and that. Because that's the thing too, just packing her up to go do something. We do not take her places. That was the one thing that we told each other, we're never going to do that. I keep her home because it's not for my other kids either. This has affected them a lot. But now that she's getting like bigger, I am seeing after me speaking to other parents, they were like, well, just wait till she gets older. And I was like, no, no, no, no, I'm seeing it now. She's still so she's so she has a with the feeding intolerance. She has like, she's diagnosed with like malnourished, better to thrive, which we've gotten it under control at this point. But she's like, vomit so much. So, Evren warned me, like other moms living similar lives, they were like, it's great that you take her out so much, but don't be upset the day that you start realizing this is so much work. And we are getting to that point. I remember two weeks ago, we always go out to dinner once a week or whatever, and once or twice a week. And she was just having a bad day, and we were all ready to go. And I'm sitting on the stairs, and I look at Scott, and I'm like, just go pick up tacos down the street. I'm like, this is not worth it. So I'm starting to see what people have like warned me about with like this lifestyle. And it's not that it's a bad thing. It's not. But no, just a lot. And like you said, everyone's motherhood journey is different. And I never would have ever thought like this was in my cards. But now here I am today. And again, I even think about like my family, like my parents, the best sports system, my husband's parents, a best sports system. His grandparents are still around. I don't have my grandparents anywhere, but they are the best sports system. My friends, like Sam, like I'm so lucky, because I know a lot of families don't. I've talked to lot of moms where they've like lost friends because of people feel uncomfortable and stuff like that. I've lost my mind. We are very lucky, but it's affected all of them as well. Like it doesn't just affect the family and then the siblings, Fernly and Vivian. Oh my gosh, the guilt I feel just because their life literally flipped a switch as well. Sometimes I feel like... Was it a good thing that this all went down when they were three and four? Because they were so young. They really don't know any different at this point now that it's been two and half years. This is their norm, the life that we live. I we have full-time nursing in our home every day. Everyone on our block calls my house the mini hospital. When first started, when McKenna had first come home, everyone was like, why are all these cars parked out there? Because we have a very small neighborhood. Now everyone knows it's like McKenna staff. McKenna has her own staff at this point. We were revolving door. It's just a mini hospital. like, but that's awkward for my other children. Like, you know, they're little, like now they're five and seven, but like, can you imagine waking up in the morning and like, you're having your bowl cereal before school and you have multiple people in your home? Like it just such changed the dynamic of our family. again, it's, it's the sad part is though, like it could happen to anyone. And it, you don't think it will, but God forbid it could happen. So that's kind of the story of all that. Sorry, like I said so much, but. No, and I think you laid it all out. So again, thank you for doing that, for sharing. And yeah, that is so much right there that not only affected, like you said, like your family, but like it's something that I do feel like a lot of our listeners have related to. They've asked for stories like this to connect you. So with that being said, and again, thank you so much for sharing that, Kelly. Where do you? outside of family, like you mentioned, like you have really great support with like family, friends. Where do you find other support like for other moms that are in your situation? Where do you find that? So I will say that I, I like, I love talking. I'm like, I'm very personal person. I don't really like me. So my husband and I were just talking about this. Um, now with us having like the ner- we're finally fully equipped with McKenna. So I still have like yet to like- get my own kind of life back at this point, I probably should have also mentioned with her feeds and all of that stuff, since she feeds all night and with the feeding intolerance, she's at something that's called, she's at a risk for something that's called aspiration precautions, because since she can't sit up or move, she vomits all the time. If I'm sleeping and she vomits, it's not gonna be good. So I'm up with her all night. I'm up with her all night long. watching and like intervening and this and that, which we are actually getting more support with nursing soon. So that's my point of what I was going to say now. I'm thankful for the support we have through friends and family. I feel like I've yet to like get back into my own self and own ways yet. But with us, we're starting to get night nursing. Our day nurse is literally the best lady in the world. Her name is Sandy. I love her to death. She loves my other kids. She's part of her family. I'm so lucky and so thankful. I have heard absolute horror stories in regards to home nursing and how it's so difficult to find like a good person or like they just don't show up or something. We are so lucky. We have full time nursing Monday through, it's Monday, Wednesday, Thursday, Friday. I specifically asked for Tuesdays off just for like a little bit of privacy in the home. But we're going to get night nursing also. And I think I'm going able to find my own like pattern of things in regards to like support wise I will say. Now that I feel like I'm comfortable with McKenna and we have like a system and everything. Like my other, older girls, they like joined cheer this year through our city that we live in and people want to help. They do. Like my husband works a lot with construction and McKenna, it was hot. It was hot as hell this year for the football games. It was so hot. And I was going to a lot of these games. I have McKenna, my girl, they're on the same squad team, whatever you want to call it. Most of the games were honestly fine, but it was hot. It was a hot like. August and September, you do agree, like it was warm. It was really hot. Like, and we kind of doesn't like love the heat, but like, I didn't even know half of these like women on the team. It's our first year doing it since they're so little. People are, she was like having a hard time like choking or something. And I'm like taking care of her and like people coming up and they're like, I'm an RN. Do you need any help this or that? Or on the last game of the season, this one mom walked up to me and I've seen her son there. Definitely a very different situation. But she was like, hey, just so you know, and obviously you live in this community, there is a special needs mom group that gets together at this church. Like, and I've been like seeing you this whole season and your daughter's much younger than my son is. He had to be like 13 or 14 years old. She's like, I've been doing this a lot longer. And I appreciate any resources and help that anyone will give me. Cause I don't know what I'm doing, honestly. Like this is my first time. I think I've gained a lot of knowledge, but. People like that know a lot more than me. She has 10 plus years on me living this kind of lifestyle. there's so much support from even people that you wouldn't even expect and like help when I'm just out in the public with her and it's nice. It's a welcoming, good feeling. So yeah, I would say on that way, I'm still, my point also is I'm still trying to figure out like what I'm gonna like do for myself once we have more support. ⁓ I the guy, I'm like, I'm joining the gym. need to have something once the girls go to school. I need to like go do something, you know, just to get something back for like myself. Cause I am like, we just went to a pediatrician appointment two, weeks ago and McKenna's pediatrician is actually my other girl's pediatrician. So we've known him for seven years and he is phenomenal. He, he's just so good with this situation. He, we know him, we love him. And he just said to me two weeks ago, he was like, you know, Yeah, you're my kind of caregiver, but you're also a mother. You need to be a mom, not just a caregiver. And I was like, I know, doctor, I know. And because he just knows it's exhausting, like up all night and like the vomiting and the phone calls and the doctor's appointments and the therapy. Like, it's insane. But he said that to me. And I was like, I promise. I'm like, things are changing. We have a better schedule going. I'm starting to feel better. So I'm definitely going in the right trajectory. And you got to do things for yourself. I mean, at the end of day, you know, or you just live like miserably. And like what I always say is me and Scott both, we went through the sad phase, we went through the depressed phase, we went through the whiny phase. And now we're at the phase of this is our life. Scott always says these were the cards we were dealt. And unfortunately that's true. And I'm not gonna like weep on them, you know? Like it's not changing. So my kids deserve the best. And like that's like today, like yesterday last minute, I was like, let's pack up and let's go up north. You know what's traffic was yesterday when that snow came? That sucked. But I'm like, no, we're going to do it. Like the kids deserve this. They're out on the snowmobiles right now. McKenna's napping, but whatever. I'm going to bundle her up when we get off. I'm going to bring her down there. Like you have to just enjoy what you can, you know, take what are blessings that you have, you know? 100 % agree. I love that you're going to start doing things for yourself because I know these past two and a half years, I can tell right now you haven't and that was never a thought. It just wasn't. And that's where you were, you know? 100%. But I'm really happy to hear that even if it is the gym, something that's Yeah, something little. Yeah, it's going to Cali's. That's awesome. way home. And I'm like, that sounds great. Like just to like, I just want an agenda. I miss having like an agenda. Like I just miss that. 100%. When people are, and this can be family, friends, strangers, right? Like you mentioned, like people, the other moms from cheer, really for anybody, but people could say things. Like I can't imagine, right? Which I think is, is okay. Like I'm sure you hear that a lot. I'm sure there's many other things that you hear or have heard. What do you wish that people would say or even do in these situations or in these moments when they're talking with you? Okay. We talk, me and Scott talk about this all the time. Everyone means well, 100%. And I'm like, like I told you before we got on here, I'm like very blunt at this point again, just because we felt all the feelings, sad, depressed, why, blah, blah. So I almost like. I'm almost okay with how people say that because it is an uncomfortable situation. It is. Like, it is. And I can't blame someone for not knowing what to say. Because I just said five minutes ago, I don't even know what I'm doing. I'm like literally learning daily with my kind of. And I talk about this all the go to my mom's right now. has difficult time all day long. She's my own parents. We're so close. We're so close. And even right here, he's like, what do we do we do? I'm like, baby, I'm not saying it. I'm saying I don't think it's wrong when people say, is my favorite thing. And I kind of say it sarcastically. ⁓ And over medical grade results, minus the med school waiting room. Book solo or with friends, they call that a party. Whether it's just you or a whole crew, it's expert care delivered your way. bookpinched.com now. Red Barrel has always been a place where families come together and that tradition continues under the care of brothers Luis and Carlos Vasquez. One of the beloved neighborhood landmarks, restaurant was brought back to life when the brothers purchased and restored it in 2017, determined to preserve its legacy for community. Drawing from their own journey, starting out in Chicago with Humble Beginnings and building a successful construction company, they poured the same dedication into creating a restaurant that feels like home. Today, Red Barrel offers a warm family oriented atmosphere serving a menu. That ⁓ others turn their passion for travel into a reporting media. Whether you're ready to book your dream getaway or start your journey as a travel professional, they're here to help every step of the way. Visit vacationwithmelissa.com or find them on Instagram at vacationwithmelissa.com. genuine people or like ignorant people. Obviously every situation is different. Nine times out of 10, it's a good person just being genuine and they don't know what to say. They are sympathizing, they feel bad, and I'm not going to make them feel worse. You know what I mean? Like, They took, you know, so, cause then there's other side where you go places and people just like stare and it's awkward. And I don't care. I'm an adult, but like my other two kids are like, why are they staring? Which again, my other two kids, they had to grow up way too soon. Honestly, it makes me upset, but they are so mature and they are so good, especially my oldest Brinley. She has McKenna's back. Like there's no tomorrow. Like she will go to bat for that little girl. Like she's like said things and I'm like, I'm the adult. at like the store or something or at a restaurant specifically. And I'll be like, Brinley, shh. And she's like, oh no, why are you? I'm like, and she's seven. Then my husband's like, hey, no letter. I'm like, you're right. I love her. my gosh. She, McKenna is her girl. She is her girl. McKenna is the biggest hype team between her siblings. Oh, she's so loved. So I wanted to kind of talk about McKenna and especially like her personality. What does Joy look like now in your home, right? Like what lights her up? And I kind of want to talk about your connection and relationship with her too. Okay. So with her being blind and deaf, is hard to like figure out like, or it was hard to figure out like what she enjoys. She just loves like when we're in a room with like people and like everyone's talking, like she'll be laying there and leaning in her chair. like, if there's like a ca- she loves chaos. I'm gonna suddenly get at that. She loves chaos. When there is chaos, she's like, And she's smiling, gummy smile, and she's so excited. Her feet are kicking. She like found her feet and like she will kick. It's so funny. We're always like, where are going? Because she's like, you could tell like on her face, she has the biggest smile on her, like her tongue sticking out, like she's like focusing and like she's just kicking, kicking, kicking. But it's like whenever there's like chaos going on, she's like in the best mood. Also making sure that she's healthy because I'm not gonna lie, we went through it last year before we had the medical equipment. ⁓ my God, this poor girl. She had... RSV, pneumonia, influenza A, just obviously the colds, upper respiratory. Oh At one point she had RSV and pneumonia at the same time. It was insane for nine months straight. I was like, what are we doing? This is insanity at this point. It was wild. We've been healthy since September, which is literally amazing. So we all really feel, even all of her therapists, we're finally able to grow. She's able to grow kind of. Before, she was just so constantly sick. It was just step back after step back. And also when she gets sick. she's immune compromised. It's not good. So we've seen a lot of growth and we've of learned her little twerks. She loves the song, The Wheel is on the Boss. She loves when the girls stomp their feet. She loves when our dog barks and our dog's obnoxious and barks all the time. If you like, ⁓ it's so funny, if you drop something, that's why we say she definitely hears tones. If you drop something, she will literally belly laugh. And she never laughed up until eight months ago and she started belly laughing. It's like the dud. That's why we think she hears tones, which we're also in the process of ⁓ getting her... It's not hearing aids, it's like this band. I know the name of it, but I can't think of it right now. And that's also to pick up vibration and stuff, so I think that's going even help her a lot, just to even hear more of the tones. But her little personality has finally come out since she's been healthy finally for so long. And obviously she still has all the other stuff that goes on. We see 17 different specialists and I'm not going to lie, currently we're... waiting to find out she may need another brain surgery. In February, we're going have a meeting about it. But it's just been so nice to see her healthy since September. Like she's never had this stretch. she's all, I didn't say this either, but she's also with, you ever heard of like palliative care? So it's like, okay, so we started palliative care through our hospital as well as at home palliative care. That's been like a huge win too. They do a lot of services also, like we have music therapy that comes and like they come and sing with a guitar and she like loves it. It's the cutest and funniest thing ever. She loves it. So yeah, we just, we've gotten the equipment, we've gotten the resources, we've gotten the correct doctors, we've done, we've switched a lot of doctors. And that's something I also would, I kind of want to say this, like anyone who listens that has like a trial of the special needs or whatever the circumstance may be, me and Scott were like so scared and hesitant when she had first come home from the hospital about like, kind of like pushing back in regards to like medically, I guess you can say, like doctors. It's a very different situation when you have a complex child. We've switched doctors. We've switched to entire children's hospital at this point. And it was terrifying because I was like, ⁓ my God, am I allowed to do this? Am I going to get in trouble? It was a lot of work and it was scary and it a lot. But as a parent, you know your kid best. Doctors are doctors and they're great for certain reasons. And again, like I said, McKenna may need brain surgery. She still has a neurologist. She still has a neurosurgeon. She still has 15 other specialists. And there's a reason for them. I call them. But as parents with children like this or have these disabilities, us as moms know them better than the day. And it's okay to have the confidence of what you feel because we live with them. And we know their quirks and we know when something doesn't look right and we know if something's wrong. When you go to the doctor, yes, they want the best benefit for the child, but they also are, they went to school, you know, for this, right? Like they, and so it's textbooks. These complex kids aren't textbook. So I feel like it's a lot for a parent with a child like this, because you don't want to do the wrong thing, because that's what I was worried about. When we switched 17 different specialists to a completely different hospital, now we are using multiple different hospitals with different specialists, because I'm just looking for the best and who we work well with. We're actually even, I have an evaluation with a hospital in Boston that I'm trying to get her into just to see, because she is very, very complex and particular with everything that's going on. There's a lot more than just like the diagnosis that I stated, but when she learned the quirks and all the things, you as a mom, I just feel you do know your daughter, your child best. Like, and it's okay to ask questions. That was our number one thing. We always just said, okay, you're saying this, but I need an explanation. Because like they wanted to, she was supposed to get readmitted last April. And I was like, I was sobbing. It was a Zoom meeting at like seven o'clock in the morning and I called my husband and he's like, no, she's not. And I was like, I don't know what to do. was on the zooming for three hours and he's like, she's not going back in. So then we ended up having a meeting the next day with my husband and like, we just shared of asked, I'm not being rude. I'm just share of asking like, well, can you, you almost have to convince me what we're going back in for. Like, why can't I want her back in hospital? We lived in the hospital for seven months. Now what? They didn't really have anything to say. And that's why like we ended up switching her, but you're allowed to do that as a parent. And as scary as it is, you have know them best. You have to advocate for your kids. have to advocate. And it's crazy because again, like I never understood when people would say that back in the before the twins were born because my other kids like, you know, it's there. I feel grateful like they're healthy and it's, their yearlies or their annuals or whatever it is. But like when you're living this side of life, no, you have to advocate. 100 % biggest like message takeaways always. Yes, like you can't and it's scary, it's it is as long as they don't be like rude, obviously, but like. No, no, let's not do that. No, I completely 100 % agree. And I completely understand really quickly before we ⁓ wrap up. I would love your perspective because you also have other children as well. So, you know, like we kind of have siblings, but also with other people's kids, whether it's school, right? Church, whatever it might be. How do you. How would you like us as parents, right? Other moms, how do we talk to our children? And I've always wondered this, my kid is two, but my kid's gonna meet people who don't look like her, everything. We're talking the whole thing, right? I'm like, the world is very large, Gigi. Like, it's not just you and me and this house, like, world's in a place. But how do we, as mothers, right? How do we talk to our children, right, when it comes to... ⁓ Medically complex kids right or disabilities like how would you because I want to be a changemaker in the world I always say that right with my daughter. How do we do that? How do we bring the conversation forward to our kids? I would say I mean it kind of sounds cliche But it really is the truth like if you're out in public and you see like a child like in a wheelchair something like that Like it's okay to like look like I didn't catch myself. My daughter is literally very very disabled. I'll be out in public with McKenna and Burnley and Vivian And like Brinley and Vivian will literally sometimes stare. I mean, they're kids, right? Like it's not their fault. And Olive can be like, stop doing like, like, come on, stop guys. No, it's actually okay. It's not a bad thing. I don't think there's any right way to go about it, but I would just say like, it actually is okay to like look, maybe not like just sit and stare, but like you can, again, so cliche, you could ask questions. Like I would rather someone ask. That was like a really big thing that we had when McKenna had come home from the hospital. We live in like a smaller neighborhood. It's like medium, I would say. It's like a horseshoe. So there's probably like hundred houses, I would say, total. And we're all like very close on our side of the horseshoe. There's so many kids. We probably have like 40 kids just on like our side. And we're all super, super close. Everyone knew what was going on when everything went on and like all of it. Obviously these kids have questions. I mean, they saw me pregnant. Everyone was so excited for Twins on the Block and that like they're supposed to be due in August and they were born earlier. ⁓ And this is a big age gap. My kids were the youngest at the time, but it went up to like 15 years old. The day we came home, I didn't know how to go about it either, because Sienna had passed away, McKenna was in the hospital. I also, as a mom, didn't want to say the wrong thing to a child on the block. I don't know how every family has their own way they talk about things. It was so awkward and uncomfortable. But we were very lucky, again, that, and these are all children, they all, it was almost better that they... did ask questions. that's why I'm saying, I feel like that's the only advice I could give. It's okay to look, it's different. It is different. That's inevitable. We can't paint this pretty picture. It is the truth. When you see a child with a feeding tomb in a wheelchair and you're walking through Walmart or Target, it is different. And kids especially are going to look. I would just say, obviously you're not gonna stop in the middle of your grocery shop to be like, oh my gosh, what happened? But it is okay to ask, it is okay to approach. And the mom that you're approaching, I promise you, even if it is in Walmart, She's not gonna be mad at you. Don't feel like you have to, but I promise you she's not gonna be like, oh my God, how dare you? She or he would rather that than just staring and walking by or they'll go like this to the kid and be like, stop it. Like as they're walking. It's fine, I get it, but it's fine also. If your kid just wants to ask a question, it's totally fine. We know, I'll be the last person to be like, this isn't different, right? Let's be real. So it's okay just to ask questions. That's what I would just say, ask questions. You can tell your kids and again, not to repeat myself, but the mom that you, mom or dad, you may ask the question to. I feel like it's like 0 % chance they're going to be mad at you for asking a question. Honestly, they probably are going to be like, ⁓ my God, someone asked. Like they probably honestly will. ⁓ that just warmed my heart. Good. I'm glad. I'm glad. I love how open you are and that you are very, yeah, you're very welcoming to questions and everything too. ⁓ yeah. I feel like no one could hurt my feelings at this point. I know I got one meme like you think you can hurt my feelings. Like literally just said that to my husband the other day. I'm like at this point, like laid on me. It's fine. ⁓ my gosh, Kelly, you're an angel. Thank you so much for coming on the show today. Thank you for sharing your story about beautiful McKenna and for sharing your journey to on social. That's where I kind of like follow and everything. I appreciate you so much. If any other moms, if you're okay with it, want to reach out to ever talk, connect, ask questions. I love that. No, I just actually found a mom that With McKenna's condition, well, any child that is so complex, none of them are the same, let's be real. But with McKenna having like the spastic quad CP and then the blind and the deaf and everything, I've yet to meet a mom that has a child similar. I actually, Sam actually sent me a link to a, it was like a news broadcast. I don't know, like a family got interviewed in Texas and Sam sent it to me. And this little boy, almost the exact same age, two and a half. blind, I want to speak on it, but so similar to Makana. And Sam was like, message the news station. And I'm like, they're not going to see it. Like, this is silly. I messaged and they gave me her Instagram handle. And then she added me on Facebook and we've been like texting. And like, that's the first parent that I have personally met that like similar enough. Like, cause I will say that too, because we have so many like therapists and doctors and all that people are so, we have gotten so many resources, like the amount of like companies. Like our hearing therapist put McKenna on a nationwide database for blind and deaf. That was in September. I have not heard anything back. Like people want to help, but like to find someone that's like similar, you know, like I've talked to so many moms that have disabled children, but to have someone on the same like level of it or the same diagnosis is you can't have the same conversations. So if I could ever talk to a mom that's living similarly, like the mom I just got connected with that is obviously it's not identical, but it's so close. We both were like, ⁓ my God, she even saw it. And she, she, was like an interview, you know, like on a news station or whatever. She was like, I have not, no one's reached out that it is blind and deaf and cerebral palsy. I'm like, ⁓ my God, same, like literally same. And now we're like talking. So if I could ever do that to someone that like hears this, I would love that because it's not that I'm not thankful for the connections that I've been given from so many people, but it also is the fact that when you have like a kid with such complexities and when people are like throwing so many suggestions or like, talk to this person, talk to that person. Here's this phone number, here's this resource. at least personally for myself, I just always feel bad if I'm gonna reach out to you and then we start talking. But if we're not like, I don't wanna say we're not the same, it doesn't matter. But we obviously also as moms have so much going on, especially when you have the disabled child. Yeah, oh yeah. It's not wasting time or anything, but it's just like, it's so hard to find someone similar. So if anyone ever heard this story or something and they have a blind, even if it's just blind, a blind and deaf child that doesn't have cerebral palsy, that's a huge diagnosis alone. I would love to speak to someone like that because it's just such a small community that you don't just find, you know? So I'd be open to that. I'm not as active on Instagram as I would like to be with posts. I do my stories. I feel like you always see, but I don't like post as much as I used to. I'm very, very active on Facebook always, but I am on Instagram and you're more than welcome to share the handles. Beautiful. Okay. I'm going to drop them in the show notes. So awesome. Kelly, thank you so much for being here with us today. We appreciate you.