Deonna's Story

Episode 3 of Raising Disabled - Deonna's Story

Rhandyl: [00:00:00] Hey everybody, we are back. Last episode I spoke about my experience and kind of how I started raising disabled and how, how that. Is uh, in my world. And this, this episode Deonna's gonna tell her story um, about when she began raising disabled. And so I'll start out basically Deonna, when did your journey begin in this world?

Deonna: So Allie was four at the time when she became disabled. She's seven now, but. You always remember the dates and whether it's a birthday for you, but for us, our day was November 7th, 2020. Wow. Right in 

Rhandyl: the middle of the pandemic and 

Deonna: yeah, all the fun stuff and the holidays and all the fun Oh yeah.

Deonna: Triggers that we get to go through every single year. [00:01:00]

Rhandyl: Yeah, man. So what exactly happened? Do you know, 

Deonna: or, yeah, I mean we kind of, we kind of know what happened. So she was basically just playing on the couch like every other kid, you know, and she fell off and she did hit her head and her neck. Kind of funny.

Deonna: I actually didn't see it, but. She started acting so weird afterwards and I was holding her and when we tried to stand up, I was holding her for actually a little while, but she became paralyzed within just a few minutes, and I didn't really realize what was happening because I was holding her and I.

Deonna: Thought she was being silly or something and I said, come on, let's get up. Let's go to Sonic. And I thought maybe, you know, because what kid can't be bribed by a sonic run. Right. And, when I tried to set her up, she just collapsed face first onto the ground. And I just thought, [00:02:00]what is happening? And so, you know, panicked for a little while and couldn't get ahold of my husband.

Deonna: He was at work and so I just called 9 1 1. You know, they didn't even really take it that seriously. They thought she was just being funny or silly. And so met her up at the hospital, had my son with me, so couldn't ride the ambulance and met her up at the hospital, found her. They, they weren't even using her real name.

Deonna: And found her in a room and I had to wait to go in until my husband could meet me. So, you know, she was alone, just freaking out probably. Oh, as a four-year-old. Yeah. And so we get in there and they take her back for an m r I pretty fast obviously, and she. Was kind of okay. When she went into the mri, she was talking acting pretty normal and, I mean, she was paralyzed, not moving [00:03:00] arms or legs, but she was not acting weird.

Deonna: But when she came out of the M R I, she was like, you know, throwing her neck back and saying it was hard to breathe and I just. Ran and got the nurse and all of a sudden, she just was starting to turn blue. So, you know, they intubated her right there. And my husband had finally got there at that point, and we were waiting for my parents to drive all the way from New Mexico.

Deonna: I think that was what happened so that my husband could be in there with us, and it was during Covid, so they probably weren't super thrilled that we were both in there, but they let us both in there. And we watched her get intubated, which we talked about is not something any parent really wants to see.

Deonna: No. So yeah, she gets intubated right there, gets admitted to the children's hospital and. It's put on a ventilator and has been on one every single second since. So, you know, we're going on almost three years on a [00:04:00] vent. 

Rhandyl: And now, where I'm sorry, where were you guys at the time that this 

Deonna: accident happened?

Deonna: Yeah, so we lived in El Paso when she got hurt. We had found out the week before that we were moving to Lubbock. And so that plays into this whole thing too. For sure. Yeah. But we were in El Paso for about six weeks in their hospital. She got her trach there a few days later. The G button, because she couldn't eat anymore.

Deonna: I. Which she can eat now. But back then, no eating was on a trach. She couldn't talk to us because they had her trach cuffed, which basically they filled this balloon on the inside, so she couldn't even talk. So, I mean, she was so terrified, obviously. We were there for like six weeks.

Deonna: She was getting way worse and they were a great group of people there, but she just was getting so much worse and she was just trying to die on us all the time. She was doing that [00:05:00] same thing you talked about vaguely, where her heart just would stop if she got startled or upset or crying. Any little thing would make her heart stop.

Deonna: You know, we'll have to talk about this in future episodes, but, I mean, the first time she ever, flatlined I was so upset. I was screaming at them. I actually passed out because I just, I mean, I didn't even know fear that could be like that. It was, it was very bad.

Deonna: But so we, we got airlifted to Texas Children's, which is our, hospital that we were both at. And we were there. We, in El Paso, they actually diagnosed her with something called transverse myelitis, and so there was a little hope there that it was like a spinal infection kind of, but there was some hope there.

Deonna: They did some blood transfusions and we kind of thought she might, you know, get better. That was kind of our, [00:06:00] our thought for about six. It was like six weeks, but we got airlifted to Texas Children's and when we got there, They basically re-scanned her and everything, which is what we wanted. And we were all excited thinking maybe she had improved her.

Deonna: You know, you convince yourself of that. Of course. Yeah. New tests are gonna make everything okay, but in our situation, she you know, they re-scanned her, said she had. Probably actually had a stroke from what's called a Chiari malformation, which they aren't a hundred percent sure that's what it was.

Deonna: But that's basically where your brain stem is, like kind of shoved down into your spinal cord. Mm-hmm. So if you get hurt or fall or anything, you could have a stroke basically. And so we had no clue. And, and we will never fully, it's kind of like yours. We'll never fully know. Exactly what happened, like some [00:07:00] people that we're gonna talk to in the future.

Deonna: And that not knowing really does kind of suck sometimes, but she basically has a c1, which is the very top of her spinal cord. She basically has a C1 all the way down about half of her thoracic spine. So basically half her spine is just totally shot. And, you know, you can be paralyzed from having just, one get messed up.

Deonna: So, right, half her back is just like completely outta commission, stroked out. we sat in a room, I don't know if they did this to you. It's, it's a really bad memory, but they called me and told me my husband needed to come up to the hospital with me, which, you know, it was during Covid, so there was only one person allowed, but I, I knew when they were telling me my husband could come up there, that something was very, very bad because otherwise, yeah.

Deonna: Why would they do that? Exactly, yeah. And so we got into a room with about [00:08:00]20 people that were taking care of her or her doctors, and they just told us, you know, she's not getting better. This is, this is it. Like, she's never ever gonna heal. She may get like, tiny movements back in her neck or shoulders maybe like they acted like the shoulders may not even happen, but they were like, arms will never move again.

Deonna: Legs for sure, never move again. Like this is the end. And so obviously, our hope was gone. I mean it was like one of the worst days of our life. We're just bawling our eyes out in front of like, I mean, I didn't even care and I do not like to cry in front of people ever, but you know, we're just bawling our eyes out in front of like 20 people.

Deonna: So 

Rhandyl: horrible. I can't even imagine the new Yeah, just how to how do to even accept anything. I mean that's, yeah. Yeah. 

Deonna: Well, and I mean, it was possible to, and that's all I kinda words. Yeah. Yeah. [00:09:00]And obviously we've never, you know, she's so young, we haven't had that conversation with her yet. Like, hey you're not getting better.

Deonna: You know? Sorry. Like we just have not done that because yeah, we want her to keep working and trying and you just, I mean, you honestly don't really know. God only knows what's gonna happen, but. Right. Yeah, I mean they definitely killed that hope in one day for us. And what was hard about her is, you know, she was still cognitively the same as she was before the injury.

Deonna: She was listening. She knew everything that was going on that like a four-year-old can comprehend. Sure. 

Rhandyl: She just didn't understand why her body wasn't working. I'm sure that was 

Deonna: so, and we didn't either, you know? Really? Yeah. But and I mean, she was having a crazy fear and anxiety and you know, so we were dealing with this terrified kid that knew kind of what was going on and so when a kid vagals Any [00:10:00] little thing can cause it.

Deonna: Even them getting emotionally upset or crying or freaking out can cause this. So we had to tell our four-year-old, Hey, you can't throw a fit. You can't get upset because you could die. So, I mean, it was just the most insane conversations like to have with a four-year-old, like, don't cry too hard. Or you could die.

Deonna: Yeah. I mean it was, it was insane, but, oh my gosh. So, you know, Basically, she knew what was going on. We were, so traumatized. Me and my husband were both there along with our son and we were taking 24-hour shifts. One of us would be with one, one with the other, and then we would switch at night.

Deonna: And I mean, I was so traumatized I couldn't sleep. I'm sure you went through the same thing. I was taking so many, like if Walgreens had a sleeping pill that you could take, I was taking 'em all at the same time. It's like a miracle. [00:11:00] I didn't like, not wake up one morning cause. I was just so, so stressed and anxious and upset and insomnia.

Rhandyl: Insomnia is kind of, yeah, comes hand in hand with the. Just depression and anxiety. Oh, yeah. And all of the things.

Deonna: Well and worst, you're sleeping. You're sleeping at a hospital where no one cares if you're asleep. They're in there talking about their weekend and you know, and so, I mean, on a, on your best day, it's hard to sleep in a hospital.

Deonna: So on your worst day it's impossible, basically. So yeah, it was not good. But. Yeah, like I said, she, she kept having these really scary close calls where her body was so weak that her heart was stopping and things like that, like. Paralysis is extremely complicated. Like, the not moving your arms and legs is actually the simplest part of what paralysis is.

Deonna: Your entire insides just shut down. It's very, very [00:12:00] difficult and complicated. But we were supposed to go home and. Then she vagaled and her heart stopped. So we had to stay in Houston for actually like another month maybe, because she had to get a pacemaker, which was scary. I mean, anytime you're dealing with the heart, it's scary.

Deonna: And so I'm glad we've had that. That has saved her on so many occasions. So, oh, that's a blessing. Scary but smart. Yeah. Yes, for sure. But you know, we'll talk about this in another episode, but because of Covid there was this, this underlying stress of the germs we had to tell our families. You know, you must stay away from everyone.

Deonna: If you want to come visit us, you have to wear masks around us 24 7 because if we get sick, we can't go in and see her. They were taking, there was like three levels of checks to get up to her. I mean, it, the, [00:13:00] the covid aspect alone, I mean, was just horrible. We weren't allowed in the room with her. I think we were only up there with her together.

Deonna: Maybe like two times. Wow. Like, I mean, in four months, you know, that was all we saw together. So that was very, very, very hard. Yeah. That 

Rhandyl: on top of everything else I, yeah. So hard. Yeah. 

Deonna: Well, and, and family wasn't allowed to come see her at the hospital. She didn't see me. Well not even her sibling.  So her brother was in Houston with us. We were staying at this little apartment this apartment high rise across the street so we could walk back and forth because we were going so much. And, he was trying to cope with everything. I mean, we, he was still doing school online, but me and Dane were so distracted and so traumatized.  We had to tell him, after we found out what happened, we had to tell him, hey, she's not getting better. This is not like a [00:14:00] phase. I mean, that was the hardest conversation I've ever had to have with anyone., he was just so devastated, obviously, but, and how old was he? I could cry about it.

Rhandyl:  Huh? How old was Cole at the time?

Deonna: I'm trying to remember. I think it was like eight or nine. Okay. It was, yeah, he was, yeah. 

Rhandyl: just trying to get him to comprehend something like that with all the stress. I can't imagine. Oh, 

Deonna: yeah. It was terrible having to tell him that. And I mean, I. He knows and he doesn't talk to her about it, but he knows.

Deonna: One time some rebels let him see her for like five minutes. So that was about it. But I mean, yeah, he didn't see her for a, I think over a hundred days or something. Wow. It was crazy. But you know, he, he survived through that part like we did and we tried to balance. Taking him to go do fun things. 

Deonna:  There was just an underlying sadness with everything. , you can go back and look at pictures and be like, oh my goodness, how did we survive that time? [00:15:00] I just like, don't know sometimes, but and then also in, you know, you're never supposed to like do these major life stressors at the same time.

Deonna: But we also moved from El Paso to Lubbock during that time, and my friend Ruben, he's this realtor at Clear Rock, but he found our house in one morning. And I mean, it was crazy. We flew out, we had to get special permission for my mom to be with my daughter because of Covid. Right. And so, yeah, we flew out one morning, picked out a house and flew back.

Deonna: And so That's amazing.

Rhandyl: That was a God thing, I feel.

Deonna: I mean, it was, yeah. I feel like the house was specially designed for us, but only like 10 years before. Yeah. Cause it's so perfect for us. But yeah, I mean that's basically the. Initial, hospital time. It was, it was tough. Yeah. So 

Rhandyl: when she finally got home with Allie and [00:16:00] Cole in your new home in Lubbock how was that?

Rhandyl: How was life after? 

Deonna: The beginning. Yeah, so we finally, we flew home on the same jet that you flew home on, and I think we were happy for like a day or two. Like we were just so happy to all be back together again. And then that crushing reality hit that we didn't have a safety net of all these.

Deonna: People it was on us. Yeah. And like you said, we were trying to figure out what our nurses what that was gonna be like and everything. And me and Dane both were really people who just wanted to be at home alone, a lot like home bodies. So introducing all these people into our life was really hard because we actually don't, we didn't really have people at our house very much before, so that's been a big change, but we, so when, the craziest thing is when we first got home.

Deonna: So basically kids with trachs can actually get this thing called a mucus plug where it's kind [00:17:00] of a gross word, but it's where their trach can completely become plugged off where there's no air coming in or out. And we had not experienced that until we came out here de Lubbock where it's real dry.

Deonna: Mm-hmm. And that happened one night and. All the training kicked in, but oh my gosh, I couldn't believe that we were having to do C P R on her. She was totally blue. All her numbers were zero. I have a terrified nurse standing next to me, you know, and so frozen and me and my husband start switching the trachs out, which we had practiced a lot, but when you're really doing it, it's like in an emergency situation.

Deonna: Yeah. Oh yeah. Your hands are shaking, your brain is going blank about what you learned. And yeah, luckily Texas Children's did a good job teaching us, but me and my husband are down on the ground doing this. My son is just standing behind me screaming at me to save her. I mean, the pressure of that [00:18:00] was just so insane.

Deonna: And so, yeah, he's seen so many horrible things for his young, young age, but, that happened and I'm kind of, I'm not glad it happened, but it kind of made us realize what we're made of and that we can do it. And my friend had told me, you'll have to do C P R on her at some point. And I just thought, no, no way.

Deonna: But yeah, well the first week we were home, so that's really, we really. Jumped in there. Yeah. But, we were trying to figure out the nursing, the therapy and just, we, we knew no one here really. We had very little support here, whereas in El Paso we knew tons of people, so it was hard moving during that for sure.

Deonna: Just coming to a new place and like you were saying, I, I basically like if we went out in public, I just hated every single girl that even remotely looked like her. Like if they were around her age and had curly hair, or [00:19:00] even just barely looked like her. It was just so hard. Like I was so jealous of all these other moms whose kids were healthy.

Deonna: I just wanted to like scream out in the store, do you not know what has just happened to us like this? Because people just assume when they see a kid in a wheelchair that they've always been that way. Right. And it, it just, it was like, no, this just happened. And it would really shock people when they would say how, you know, like, ask me how long she had been in a wheelchair and I'm like, she’d just got in one, you know, two months ago.

Deonna: It was really crazy. But, her first year of being a home, she was in and outta the hospital like every 20, 30 days. We didn't know what we were doing. She was just getting little sicknesses going in the hospital constantly. And so, I mean, honestly, we had to go back to Houston at one point too for a big surgery and everything.

Deonna: She was in the hospital so much even after we came home for months, you know? Yeah. And that was [00:20:00] hard because you think your hospital time's over, but it's never over for us. Like, no. That's always something that is going to be happening for all of us and it's, it's really hard, but yeah, I mean that's, that's basically what the initial part was like.

Deonna: Yeah. 

Rhandyl: And I remember that time, like we had never met in person, but of course we followed each other in our, our children's stories and stuff through social media. And I do remember just the 20 days home, , like finally, you know,, like, yeah, we made it to 20 days. You know, just But that is, that is the reality.

Rhandyl: Especially when they are that medically fragile. And also before we learned how to, like all the tips and tricks of how to keep them home and out of the hospital. 

Deonna: Oh yeah. I think most of it was our fault in a way, and, and back then I wouldn't have been able to admit that. But now you look back and you're like, I didn't know what I was doing.

Deonna: And that's scary, you know? But that was just reality. It is. It is 

Rhandyl: reality [00:21:00] because unfortunately we are Guinea pigs in these situations. I mean, They're at home with you and our, I mean, we're, they're the lifeline and we're human. Yeah. So, yeah, it's, it's hard. It's a hard thing to admit, but yeah, I mean, Thank goodness they've lived through our mistakes.

Rhandyl: Right. I know. Oh my goodness. So what's been the hardest thing about being a disabled parent for you, Deonna.

Deonna:  I think there's just so much pressure it was seriously, like you said, a miracle she didn't die in 2021. We didn't know what we were doing. We were just so traumatized, so tired.

Deonna: it's a miracle. And. Um, the hospitalizations initially were the hard part. We're kind of, we're not having that as much as before, but at the beginning, every time your kid goes into the hospital, you just feel like this huge failure and that you messed up and that's why they're in there, basically.

Deonna: But the hardest thing, for me, our lives are just dedicated to [00:22:00] taking care of her 24 7 in a way that most parents will never, ever understand. You know me and you aren't gonna have this retirement situation probably if they're still with us. And that's something that we have to think about.

Deonna: Like we'll always be taking care of them, and then we have to deal with the fear of if something happened to us, who would take care of them. I mean, there's just so many horrible, dark things you can think about, but. I tell people that taking care of Allie is like taking care of very sick, newborn triplets for the rest of your life.

Deonna: I mean, it's that hard. It's that much work. Every waking moment of your life is dedicated to that. And at the beginning, that is true. As you get away from the initial shock, I think there's ways. To cope with that and have your own life, which I've definitely tried to do, but yeah, it's just, it's so much work.

Deonna: We get constant attention everywhere we go. [00:23:00] Everything we do and say is being watched out in public and at home. So yeah, there's no break. I mean, you are always being watched. You always have to be friendly and nice and on your best behavior. And I mean, there's really no room for acting like in a bad way because someone's always watching you.

Deonna: Which is hard. But I, I do think it's hard. Everyone treats my kid weird. And I think everyone has the best, like their best intentions for sure. But kids, just, kids treat her funny. Adults treat her funny and that's hard because. My kid can hear everybody and knows what's going on and understands what everybody's saying.

Deonna: So when someone says something really weird, it's hard on me. And it's hard on her too. Yeah. And it's hard on my son and my, I mean, just all of us, it's, it's hard, but We compare our lives to each other, to other people who are [00:24:00] healthy. And that's really hard. And like you were saying, it's hard to make friends because you meet these girls and they, they talk about things that you think don't matter at all.

Deonna: And so it's, it's hard to relate to other girls and my, in my experience. But yeah, no, for sure. Some of your friendships that, go ahead. 

Rhandyl: People worry. No, just like the, the things that your, you know, your typical parents are extremely worried about. Yeah. Are so in our minds so minute compared to, and so that's, I know, that's, so it's, it is very hard to relate in from even from out.

Rhandyl: I mean, it's hard for them to relate to us, but it's also Yes. In turn hard to relate to them. So, yeah. 

Deonna: Yeah. Well, and I think the hardest thing for her has been, she remembers, I don't like to use the word normal, but she remembers what it was like to be a normal kid. She was riding her bike, she was running, she was on the playground.[00:25:00]

Deonna: And so she remembers all of that, and she's still really sad. And so every day, I think of things that she can't do anymore or that she won't be able to do. And you can do all the inclusion in the world and there's gonna be a million things she can't do. And that is just a fact of life that me and my husband have to think about every single day.

Deonna: And, and so does my daughter, because she's still cognitively intact and knows, she knows it's, and that's, yeah. Really. Like, I'm glad we didn't lose that part of her because I know some parents who did, and that would be so hard. But her remembering everything is also hard. It's just all hard, basically.

Deonna: But yeah. Yeah, that's, that's what's been the hardest, I think. So obviously 

Rhandyl: there's lots of highs and lows of course. So yeah. What, in your experience so far um, ha good c has came from this experience and [00:26:00] this traumatic event that happened in, in your family's lives? 

Deonna: There's been so many good things that have happened and even Allie will admit that, like she, she'll say that there's been good that's came out of this in and it's her own body, you know?

Deonna: But. Like you said, last time you know, don't sweat the small stuff. I very rarely care about anything anymore, and that's a good and a bad thing. Like there's definitely I care about people still, but. I just don't, I used to sweat the small stuff. I used to care about appearances and just all these things.

Deonna: And now like, I should probably care a little bit more about like getting dressed every once in a while and stuff. But I just, I don't care about anything. Like you'll see me in sweatpants every time, like I just, you know, whatever. I don't care. But I, I definitely appreciate the little things that I just never even noticed before.

Deonna: I just appreciate stuff. There's things that happen that I think are great that I would've missed, yeah. I have [00:27:00] realized who my actual friends are, who my supporters within my family are. People are just not created equal. And there's some friends that our friendships didn't survive this, and, and that's okay.

Deonna: But there's some friends who really like, came out of the woodwork and we're awesome. And it surprised me. I mean, you just, you see how people really are and what they're made of too. And so that was cool. And, when you receive a GoFundMe or something, that is one of them, we'll, we'll have to talk about that in an episode, but it's just this crazy humbling experience realizing that that many people are willing to part with their money for you.

Deonna: I mean, it just was crazy. But I think. It, it inspired my faith to share my faith with no fear, no hesitation. I used to be worried about what people would think of me . And now it just, it's in every conversation. I don't care. , God has. Got me through moments so low that I was on the floor.[00:28:00]

Deonna: And so if he can do that for me, I, I want other people to know this. And so it's made me less afraid to talk about that stuff and I've realized it's okay to live that slower life. It doesn't matter if your kids are in every single thing it does. It just that stuff doesn't matter. What matters is your kids being good human beings.

Deonna: And that's, that's all I care about at this point, even with Allie. And so yeah definitely there's been so many good things that have came out of it, which was surprising because when you lose hope like we did for a while, , you don't think anything good's ever gonna happen again. You've become very, very low.

Deonna: And so I'm, I'm glad now on the other side of this it's not over. It's, it's never over for us. Never. There's always. Like I tell my husband every morning that we wake up, I'm like, okay. She lived through another night and at night I think, okay, she made it through another day. And there's a million reasons that that [00:29:00] shouldn't be happening.

Deonna:, we're just literally thankful every single day we. We, like you said, don't take it too far in advance. We just think about today and that's it. And that's, I think that's the best advice I can give people is to not get too far ahead of yourself if you are a disabled parent. Because if you think about 20 years from now, it's just too much, 

Rhandyl: Yeah you definitely have to just stay present, like you said. Just. Finding the good and the little things. Just small things in your day to day. I, I totally agree with that. Man you're such an inspiration, Deonna, and I am so excited for others to hear your story and relate.