Abbey Raising Avery

In this episode we talk to Abbey Luckett Benjamin from Louisiana about raising her daughter Avery.  

We talk about her daughter's diagnosis of  Adenylosuccinate Lyase Deficiency or ADSL, her seizures, living with a medically complex child in a rural area, Avery participating in dance classes, and how she finds joy in the midst of trials.

Follow her Instagram at @abbeybenj

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Transcript

Rhandyl: Hey y'all, welcome back to Raising Disabled. Today we have Abbeybenjamin with us, and we are so excited to talk with you. We have been following you for a while on Instagram, and I love how you share the reality of disability in an honest but positive way. So from what I can see, obviously through your social media your daughter has been dealt a very difficult hand. That we all know how that affects us and our families in so many ways. But she Has such a light about her and from what I can see , it appears that she is living her best life given her circumstances. So, We're excited to get into more about you and your family. So, If you want to tell us where you guys are from and whatever else you would like to tell us about your family.

Abbey: Yeah. Yeah. So thank you so much. I'm not a crier. You're gonna make me cry this morning. So we are from North Louisiana and , my husband and I have a son who is 11 years old, and my daughter Avery is 8 years old, and she was diagnosed, she had her first seizure at about 4 months old. And we really had no idea what was going on. And so that started the snowball effect of finding out that she had a genetic metabolic disorder, super ultra rare. And I could talk. Really for hours on just that story, but I'll let y'all kind of go into that. But that kind of started our fight with everything. So for starting at four months old.

Rhandyl: Oh, wow. I do have to say, I love Louisiana. It's my second favorite state behind Texas. So we're at in Louisiana, you said northern. 

Abbey: Yeah, we live in North Louisiana in a very rural town. It's called Mangum. Okay. So actually, I grew up in the hometown of Lainey Wilson, the country singer. 

Rhandyl: Oh, I saw a video that Lainey had sent on your Instagram. That was really cool. I love that. That's so cool. Really cool. Yes. I love her. 

Abbey: We're just in the country, which is why we drive six hours we go to Texas Children's in Houston. We drive about six hours to get the best care. Yes, 

Deonna: we all need to go there at the same time and we can all hang out. Yes, we do. Because we go there and we, 

Abbey: the chances of us being there at the same time are very high because we're there a lot. Yeah, 

Deonna: I, yesterday was on the phone for over an hour and a half trying to schedule six appointments plus a sleep study, plus cardiology stuff, all within like a three day window because yeah, it's so far for us too. We're in the same state and it's still so far. 

Abbey: It's hard that, this doctor's only here on Tuesdays or this one's only here on Thursdays. So it is hard to schedule out. I try my best to do that, but it does not always work out. 

Deonna: Yeah. Oh man. Yeah. We need to all plan it and go be there at the same time. 

Rhandyl: Yeah. It's funny. You live in a different state and your drive is three or four hours shorter than ours. Oh my gosh. Is that really? I know. But it's, Texas is so huge. Yeah. It's about a nine to 10 hour drive for us. 

Abbey: Oh my gosh. It's what's worth it. It's the best. It's the very best place. It is. It is. And I, not only is it the best, but I can get contact with them through my chart same day. Yeah. So it's wonderful. 

Deonna: Oh yeah. , I love that hospital. They do a lot of things right, for sure. So your kids are almost the same age as mine, cause I have a son who's about to turn 13 and then Allie just turned nine. I definitely know that like dynamic of the older brother and the, little sister and oh man, it's the sweetest like relationship ever, or at least at our house.

I saw a video of your son. Lifting her for the first time and I was like, I, it's like the crying thing too. I'm like, I can't watch this right now. I'm not in the mood to cry, but , Cole, my son wants to lift her so bad, which Allie's a little bigger than your daughter, but I'm like, Oh my gosh, he wants to do it so bad. And I thought he needs to be lifting her. Cause I'm getting weaker, I feel like, and he's getting stronger. They're going to be our little lifters someday. Pass the torch. Rhandyl, your son's going to be lifting. Remi, too. I know. 

Rhandyl: Yeah, , my daughter's also eight. And then my son is three. 

Remi's petite, but it's funny, my three year old, he's already taking big brother roles. Yeah. And it's cute to watch the dynamic for sure. Sweet. I love that. 

Deonna: Tell us more. Tell us more about the day, cause we all have that memory of the day when you realize something's not right. And yours is a little different because sometimes a lot of these moms we talk to, they're being told before or the day the kid is born Hey, this is not going to be your normal situation that you thought. So tell us about that day and just, the diagnosis and things like that. The initial part. 

Abbey: Yeah, so I'll actually, it's a two parter. So the first time I remember, obviously it was when the first seizure happened and we were in the hospital about four months old and the doctor came in and I've been a nurse. Now, 11 years. But I was a nurse. Yeah. So I watched the doctor come in and she had the pin light, so that's what they use for your eyes to track. And as the doctor, she kept doing it. And then I kept looking and I kept noticing Avery was not tracking. And so it's so silly to me now, but I remember going in the bathroom and just cry because I was like, Oh my God, she's blind. You knew too much. Yeah. Now looking back, I feel almost and I shouldn't feel this way, right? Every moment is a moment of growth and learning, too, even as a parent. I look back and think, like, how silly that I thought that if she was blind, she couldn't dance. Like, how silly of me to think that. But that kind of started the process. 

Deonna: But you do have those feelings. 

Rhandyl: It's just a process of Yeah. Everything that could have been that's not and yeah, 

Abbey: And what I thought life would look like and so the moment I got the diagnosis still at that point, she just had seizures, right? And I was on my lunch break in the car. We had seen a geneticist and nothing stood out, they look at if you've ever been to a geneticist, which I'm sure y'all have that first appointment, look at their hands, everything like they look at the folds in their hands, they look at their head, they look at their nose and everything for every everything looked quite, quote unquote, fine. Nothing stood out to him. Yeah. And so he sent off the panel 

and um, so it was about, I want to say a month later that he called me and I was on my lunch break and they told me over the phone, Hey, we've got a hit. Your daughter has a genetic disorder. And I'm like, okay. And so I remember getting a envelope in my car, and writing on the back of it, all of the information he told me, which was not a lot but it was adenylosuccinate lyase deficiency, it was a metabolic disorder, it was ultra rare, he had never seen anybody with it, and the only thing he had was from the 1999s, maybe, something, and he would mail it to me. And do not go and Google . That was literally our conversation. 

And I was in my car on my lunch break. Walk right back upstairs and put it in the computer and Googled it. Yeah, Google. Yeah. Yeah. Like immediately. Well If you're gonna get it in the mail, I, oh my gosh. Like you have to wait like old school. I need to know. Oh man, that's rough. So I did Google it did say, yeah, we found an infancy, which hers was right. Very poor prognosis. And I don't even remember crying on that one, which is so crazy. Like you see your child has a poor prognosis, but I distinctly remember thinking if we have, seven more years, if we have 70 more years, if we have seven more weeks, . I'm going to get her the best care, whatever we do, we're going to get the best care, we're going to live life and we're going to push forward. And so we really, we have done that. We have done so much these past years and getting her the best care and finding things out and that really translated in us. We went to Texas Children's because I called and she had one patient with it, a doctor there did. So that's how we ended up at Texas Children's. 

Okay. Wow. Yeah. We've seen geneticists at Texas Children's and at Boston Children's, and the first thing that strikes me when I think about, especially initial , genetics appointments, it's like the really awkward questions that they ask parents. So I don't know if you got those, but it was like, are you and your partner related like all the and they want to know an entire family background on anything that's wrong with any of your family members it's Yeah, and then they're, like you said, they're just looking at them physically and asking you all these awkward questions, and it's your baby, and you're like yeah, I don't. know,

and unfortunately for us, , my daughter's still undiagnosed for a lot of her things especially genetically, she's in the undiagnosed disease network we keep that updated but like you said, the genetic appointments are okay we're giving you what's going on and they're just taking notes and, but there's so much unknown about genetics that, the research is still, there's so much that they have to unfold and learn about genetics, , but that's amazing that they were able to get her a diagnosis as soon as they were able to, so that you guys could plan and prepare, find the best doctors 

Deonna: Tell us the name of her diagnosis again.

Yeah, so it's adenylosuccinate lyase deficiency, so for short, it's ADSL deficiency. 

Yeah I've said this when something bad's happening to your kid, you're in denial this. Isn't happening to me. This happens to other people like I can't believe my kids having a seizure my kids Having this or that whatever, so yeah, I know how that feels for sure 

Rhandyl: Yeah, and for me, so my daughter everything happened in infancy like straight from birth, but my husband and I are both a medical field my husband is a nurse It was one of those things, like, when she's in the ICU, it's, it was like, we knew too much, they couldn't really sugarcoat anything, cause we knew, which is good and bad , but then , you're looking through a different lens.

 You have this medical understanding of what's going on, but then it's your baby and you're like, this really can't be happening. So I, yeah, I get that too. It's 

Deonna: real interesting to me when nurses become medical moms or parents of a disabled child because I've been around so many nurses, as have you guys, and it's so funny there's, I feel like there's two different types of nurses. There's the one like what you're saying where you're like, oh, you're fine, just take Tylenol, get over it, you'll be fine.

And then there's the nurses who are like every little tiny thing, they're like, Oh my God what is wrong? , so it is hard because yeah, you guys are so educated that it is difficult. Like I only know like Allie and I'm really good at that.

And that's it. I don't really know a whole lot of medical outside of that, but yeah, I feel bad for you guys. Cause you guys just know. Way more than, it makes things harder sometimes, I feel like, for sure. But you guys are more capable too yeah. 

Rhandyl: Exactly, yeah. Oh, that's so true. Okay, Abbey you get the genetic diagnoses, and what steps?

 You start working on getting doctors set up. And so what did that look like? Obviously I'm sure she started on seizure medications. Just walk us through the steps like after you get the diagnosis and where you go 

from there.

Abbey: Yeah I told y'all, so we live in rural Louisiana.

There's only one. Neurologist, pediatric neurologist, even anywhere close. So that's who we were seeing at the time. We of course got that genetic diagnosis. And then from there, I started pushing. I started calling Boston Children's Los Angeles, San Diego, Texas Children's. I started calling all the top children's hospitals genetics department because Where we were diagnosed, he would the geneticist would diagnose.

And then that was it. And I felt like I needed more. I needed somebody to follow her, somebody to help us if they'd ever seen a child with this instead of that. That would be my plan. So I had called and left messages with all of these top hospitals. Now, how was I going to get to Boston Children's and San Diego and all this?

I don't know. It was going to figure it out when the time came, but God was watching over us and Texas children call back and that dr. Emmerich had a patient with ADSL and was like, we'd be glad to see you. She was a geneticist and a neurologist. Oh man. Yes, it was perfect. So we went, long story short, we went, she reviewed Avery's meds, and Avery was, of course, still having seizures, but was doing okay at the time.

So she reviewed some things, took some things off, and when our neurologist at home found out, he ended up kicking her off his service. And said he would not see anyone who got a second opinion. Oh 

Deonna: my gosh. Yes. They have the most fragile egos on the planet. Oh my gosh. And let me tell you too, It was 

Abbey: also, Yeah.

So it was also a God thing because right before this she had infantile spasms as well. So a couple of months after she had her first myoclonic seizure, she, but it was weird, right? I don't know if y'all, Children have metaspasms, but they're weird. They don't, it didn't look like a seizure. It's called a head drop. Look, I'm showing you, but it's basically just a head drop. Their arms go out, flail, and a head drops. And I was like, something's, and then she'd cry in between them. So it'd be like, head drop. Head drop. And so I'd video it and kept sending to his office. This is the local guy. And so I kept sending and he told me to quit watching her. I was not being a good parent. That was nothing and come to find out it was infantile spasms and she had to be treated immediately because it is a life threatening form of seizures. 

It was a God thing that we got everything moved to Texas children's. I was absolutely horrified. Oh my God. What if we're in an emergent situation? Our neurologist is six hours away, but I'm telling you, y'all, we have packed up the oxygen. We have strapped things in and driven the six hours and Texas children's has gone to like, I will call her ahead of time. And most times she can get us a room where we're going straight up. If it's for epilepsy reasons, we can go straight up. So it has really been the biggest blessing in disguise. But it's been wonderful. 

Rhandyl: Yeah. Finding those amazing doctors. That's the gold right there. Whenever you have someone, even if they are Uh, drive away, , it's worth the travel, it's worth all the trouble it is to get there.

Deonna: And everything. Yeah. Absolutely. I was gonna ask you about living in such a rural place because me and Rhandyl live in a kind of bigger town, it has two huge hospital systems, but even then there's maybe two doctors in this whole town that I trust. To do anything with Allie, everybody else is in Houston at Texas Children's Hospital, 

Rhandyl: we don't have a lot of pediatric specialists here. No, we don't. 

Deonna: And we live in a pretty big town, yeah. I hate how we all have like, like, I have the same bad stories where a doctor was not up to par with what we needed. But when you first are starting out, you just You trust that all doctors are, like, the same and they just aren't there's ones that are way more special, I'm glad you got rid of that guy. He sounds really fun. 

Abbey: I'll be honest it sucks. I get really upset when I think about it because I was going to find the means to travel and get where I needed to go for her, right? Not everybody has support. Not everybody has family that will help them get there or friends that will help raise money. And so they're stuck with. What they have you know what I'm saying aren't they something like some parents may not even know that this is what he's doing It's just right. 

Rhandyl: I'm gonna say the knowledge. Yeah, right knowledge to even Realize that they can find a second opinion Or are told prior to like threatened basically if you find a second opinion Then sorry you're out. 

Deonna: Think this is a good story to point out for anybody because there's a lot of times, and a lot of people get nervous they're going to create an awkward situation, or they're going to hurt someone's feelings, or, the list goes on and on, but we had a doctor here recently who suggested a surgery. I actually liked that doctor. There was nothing wrong with him. But I didn't trust the pulmonology situation around her recovering from that here. So we went and got a second opinion in Houston. And did it all there. And then that local doctor found out and I was like, Oh crap. He knows that we went and did this somewhere else. But at the end of the day, like I, you know, I don't need to be this guy's best friend. Allie's care is my number one priority. If I have to see him and he feels like uncomfortable, he'll get over it. Like I, I can't care, but it is. It is hard. 

Rhandyl: I mean that's the definition of advocacy and it's like we've talked about on previous podcasts. It's definitely a learned thing and for some it's harder than others but it's definitely learned, . , like we say all the time, you just have to follow your mom gut and just advocate if you don't feel like something's right but like you said, I feel sorry for people that may not have the means or the capacity to fight. These physicians or the understanding that the possibilities there 

Deonna: yeah, that's tough. 

Okay, so after you had those first few moments or days, Like, how are you feeling during that time? We talked about what happened, but I remember my very real physical feelings of how I felt after they told us what was gonna be going on with Allie for probably the rest of her life. Like, how did you feel? How did your family feel? 

Abbey: That's a great question, but I'm going to be honest. I really was more focused on now. Let's get her through now. And that's really, and that may be personality. That may be my faith in God. It may be a mixture of both. But I really tried to focus more on how can I make her life as full as possible? How can I fill her life with experiences? How can I. Bring enrichment to her life, help make sure she is included in every aspect of her life. And so I really tried to focus on that. I will say some days are harder than others, right? 

So I'll give an example. I teach dance two nights a week. That's like my thing. That's my me time is getting to teach dance two nights a week. And I danced my whole life and danced in college and love it. And it's my escape. But. So she was 

Deonna: Now that makes sense what you were saying about being worried she couldn't dance. I'm like, Okay, yeah. 

Abbey: At three years old so I teach there two nights a week, and I was like, look y'all, I want Avery to take dance, but I want her in the classroom with her peers. I don't want it to be a Special class, right. to be with her peers. Either me or my husband will sit outside the class to make sure she's okay. Or we'll come to the first couple and she was so like absolutely bring her. And so she has been taken dance since and I will say, so the first couple of years were they were really difficult on me, especially fast forward to recital because these three year olds had never seen a child in a wheelchair, right? She was not tiptoeing around. She was not playing around. She was in her wheelchair and had help with her arms, had help with her legs, and so the questions that came were not ugly, but they were so curious.

What's wrong with her? Why can't she use her legs? Are her legs broken? All of these things that Over the years, like the little girls that are in her class now, that she's 8 years old, they love her so much. Like when she comes to class, they just worship her. Oh my gosh, Ava, you're so cute! What are you wearing? And, but, even still going to recital, it's so funny to see How accepted she has become in her class and how included she is. And even they're doing the little mermaid this year. So oh my God, I'm going to, but at one point in the dance, they all go into a circle. And so her helper has to get her chair so they can help grab her hands. And. They are like making sure, they're getting to their spot. But even at eight years old, these girls are like, come on, they know that her spot is coming to that circle and they're waiting for her to get there with, with their hands. 

So I will say like some days are harder, like I said but it is so worth it when you are on the other side of that. And answer those questions. Sometimes all you have to do is answer their questions. Nothing's wrong with her. This is how God made her. She might not ever use her legs, but she uses her wheelchair like her legs. This is how she dances. And they're literally like, okay. And they go on with it. Like sometimes all you have to do is answer their questions and they're like, okay. Yeah. Love that. Love that. 

Rhandyl: I've Yeah, I remember it was awkward in the beginning when kids like, at Sunday school or when Remi was smaller, she went to a parent's day out program. And then of course at school her nurses would tell me things that the kids would ask and they were the most innocent. I mean, Kids say the darndest things. Honestly they're super honest and it's things that adults probably want to ask us, but it's cuter and more. Acceptable when kids ask us, right? And yeah, and then you can answer with these very simple, kindergarten type answers. And they're just like, and then it's no big deal. And they're like, okay we'll just help do whatever we can. And the fact that she started so young , I think it's going to be, it's so wonderful for these typical children to be so involved in her life and see that it's going to make them better people. For sure. For sure. I love that. 

Abbey: It's a very special thing to watch, I think, for everybody, all the teachers that are there for the kids. It's just a very special thing. thing because they've been with her so many years, most of them that, that's just Avery and that's her chair. They know where she gets on stage.

And it's just a very, a special thing, but it did take a lot of hard work to get to where we are. And not every day is easy, right? Some days I'll go and the regression has really taken a lot of her arm movement and leg movement. She used to move a whole lot more on her own. And. Just with the seizures and her disorder, it's taken a lot of that, and she does have to have a lot more assists, like hand on hand assists. And sometimes, if I'm really having a day just watching her not be able to do, and I know she wants to so bad it's just really hard. But I know that she's glad to go when she does. I know that she enjoys the kids and the music and it's so hard to push through the bars. 

Deonna: Yeah, that's what I was gonna say, the music. , and it's hard when you're around their peers. I didn't realize you were the dance teacher, cause I saw her in a lot of the videos doing the dance classes, and I thought I loved that she's doing that.

Yeah, I'm like one way or the other sometimes like sometimes with Allie and like her peers It's gut wrenching like I'm like, oh my gosh Everyone can do this thing and she can't and it's just so hard on me and then other days One kid will do something so small, but it's like huge to me.

And I'm like about to cry over there, so it's like all over the place. I can't make up my mind. Girl, but 

Abbey: December we had the Christmas dance party and I had to kick my husband out because he was crying so bad. I said, get. Oh, this is not a sad thing. Together, man, you got to pull it together, go out and cry. And he was like, okay, it was part of your world by little mermaid. And so he just was like, you're going to have to get it together. But it was like, I know that song and her trying to dance. It was just the perfect storm, but so it's definitely not easy, but it's so worth it.

Deonna: I love that song. I think that song would be, yeah, rough to not cry, During that song. Oh my gosh. 

Abbey: Because she wants to do some she wants to, and her body just, a lot of to be part of their world. Oh my gosh. Yeah. Oh my gosh.

Rhandyl: , that's funny you mentioned that, because , I relate to, and you probably can too, Abbey but In that movie and I make a joke with it with Remi sometimes so she has a trach and she can vocalize with her PMV on and then whenever we put the vent on, she really can't vocalize as well and so I'll be like, okay, Ursula's coming and your voice is gonna get taken away for a little while and so, uh, yeah, And then she laughs about it.

She loves the villains in all the movies, and so she definitely knows what I'm talking about. But, 

Deonna: okay, so So are you Ursula in this scenario, or? 

Rhandyl: No, the vent is Ursula, not me! 

Abbey: Okay, I was thinking you were, too. 

Rhandyl: Come on! I was like red. No. Okay, I get it. Yeah. Okay, so , you've mentioned a regression , and a little bit about prognosis, but now that she's years into this what is her prognosis? What has the medical team given you? About that. 

Abbey: They really, they don't say so much about her prognosis anymore. They don't really talk to me about it. I've really pushed genetics still, even at Texas Children's such a wonderful place. It's ADSL. Her genetic disorder is so unknown that they leave it like that. It's just very unknown. We don't really know. And just because , I can physically see her regression, even videos from a year ago. Even six months ago, head control just the ability to move her arms and legs. She just recently this week started vocalizing more and it was just like magical to hear because she used to do it so much.

And seizures just take so much from her. And then we try to, do therapy and build it back up. And, it's hard to stay consistent with therapy because of seizures, like sometimes we'll be on our way to therapy and she'll have a bad seizure. And I'm like. Now we're post ictal, don't, we can't even participate. So it is such a roller coaster. There has been times where we've had like palliative at Texas Children's on board. And then she's, yeah. And then she's come out of things, so she's really kind of rollercoastered. I like to call her like rallying back. She rallies back. And so nobody really talks to us about it. But

Rhandyl: yeah. I was watching, I think it was fairly recently you guys did find out some new research on the genetics , tell us about that. She's going to be put in some studies. 

Abbey: Yeah. Yeah, so there is a mom she's in California and she has two children with Avery's disorder and she really spends a lot of time digging into all of this. So we were actually The NIH National Institute of Health, I had to really think about that, are doing a study, like a clinical, they're doing a clinical study. So we're in the process of getting all our medical records over there. They're really going to dig into everything from birth until now. And then the idea, the hope is that we get to go to Bethesda, Maryland and spend the week and they'll do testing on her. 

And so the, again, it's just, it's, clinical, it's not testing, clinical study. So they're studying her and her diagnosis. But the idea behind that and the purpose is it's twofold, right? So right now we're trying to raise money for gene therapy. And they're working on that at Southwest Texas. It's in Dallas, and so they are like in a process about a year and a half still left working on gene therapy research. So the idea is when that two years is up, if everything looked good on their side of testing, then it would go through FDA approval. And then with the NIH having done our clinical. studies that maybe the genetic therapy would be approved that way. 

So this is all like, hopefully, maybe, prayerfully, maybe believing. But it's nice to have something to , reach for and hope for and shoot for. 

Rhandyl: Something. Yeah. Yeah. That's very hopeful and very, interesting. And like I said in the beginning, genetics is improving every year and there's still so much unknown. I think the last time we saw the geneticists, they were like, only 30 to 40 percent of all gene malformalities and all the things have even been found. And so there's, it's decades and probably centuries more research. And so, God bless them, cause that stuff is way over my head, but um, oh man, it's a lot, but that's amazing that you guys are going forward with all of these things in hopes that Whatever her prognosis may be that you guys can get her some help in the future

Deonna:  I'm glad y'all are doing that because that takes time and energy and money out of your life. But, sometimes it's hard for me to think about this, but I mean there's things that, we would do. To help further science with Allie, it may not impact Allie's life, it may impact some kid's life a hundred years from now. So you just have to do what you can do to help progress. But yeah, it may not happen as quickly as we want it to happen. 

Abbey: And will this happen as quickly as, I'm like, okay, it's over in two years. Then it could get, I don't think it will be a quick thing. It's just not but. We'll do our part and try. And I think because Avery is more on the severe spectrum of her diagnosis it makes me , that much more desperate desperate for a cure, desperate for anything any kind of limelight that we can get for her. Yeah. Yeah. 

Rhandyl: ,  like I said earlier, we have Remi in the Undiagnosed Disease Network. And they just see where she's at in all honesty. I just have accepted we probably will never know her exact diagnosis or the why. But, my big hope is that, maybe in the future, even if it's Years from now, after she's passed away, we've passed away, whatever that may be, that the research that we're allowing them to do will help others in the future. And you have to find the positives of it all. Yeah. 

Deonna: Obviously, being a parent of a disabled child is stressful in a lot of ways. We all know this. How do you handle the stress of this and how do your family members, like your husband or son, how do they handle the stress of dealing with a kid with a chronic illness?

Abbey: Yeah. I think, for the majority of the time I try to plan and do and stay busy. I'm not saying that's the healthy way to manage things, but. The more that we have, the more that we have planned, the busier we are. That's kind of where I try to focus on. What can we do to enjoy life? My son is just absolutely everybody thinks their kids are the best, right? I just think he is God sent and he has never once acted, I feel like. He has every right to feel like time is being taken from him or there's a lot of things that I'm sure y'all have had to do too where we've been somewhere, had a terrible seizure, and we've had to leave immediately without maybe it's a fun day going to the movies and she has a bad seizure on the way we have to turn around and go home.

There, just recently I had to miss his like precious fifth grade Christmas program because Avery and I were in the hospital and y'all I just cried the whole time because I was like, I should be there for him, but he is so incredibly kind understanding.

I will say that I do try to make it actually this weekend. We're going to a mother son, weekend camp. So I do try to do that once a year. Yes. It's so special. It's a weekend where I say yes, yes to pickleball. Yes. Let's ride the horses. Yes. Let's play kickball. There's so many times where we're at home where I cannot. Yeah. I can't play basketball without taking care of Avery. I'm feeding Avery. I'm watching her. She's not doing good today. So it's a weekend where I'm like, yes to everything. And we actually started doing a weekend like in August too, my sister pays for the plane ticket and we do another weekend with just him too. And I just feel like that's something that we've started. That's really special for him. , he just is so understanding and has every reason not to be. But I do think that special time has helped. 

Then my husband, he tends to stay busy with things. He can not really sit still in a different way than us. If he's like outside chopping wood or doing the, long so we all have our different ways of handling things and maybe none of our ways are correct And then of course like we all crash at different times There are times where I have to talk him off the ledge and say okay get it together she's fine We're gonna be gone. It's gonna be good. And then there are times where he has to Positive poly me off the you know, it's gonna be fine. She's gonna be fine. So thank you. We have them at separate times, so we can help each other get back on track. 

Deonna: It is good. There's times where if you sit around too long, you start thinking about things and it can get tough. So having a full life where they're both doing things helps. I definitely agree with that. 

Rhandyl: It sounds like you're very intentional about not only the, Inclusivity with Avery and making sure that she's having the best life that she can. But also being aware that we know how much that takes away from , our other children. And spending that extra time is definitely very important. You're being very intentional with that, and it's awesome that you and your husband have such a good relationship that you can both pick each other up when you're down, and yeah. Yeah,

Abbey: we try anyways. Let's just put it there. We try anyways. I get

Deonna: it. I get that. 

Rhandyl: Okay. So what are some of the hardest parts for you about caring for Avery and her, daily routine or just in general, the hardest parts for you? 

Abbey: I'd say just the older she's gotten and the bigger she's gotten. It's gotten physically harder on my body. After so many years, it becomes just second nature. You get up, you have to make the meds. You got to get the milk ready, change your clothes. It becomes so second nature, but I think physically on my body. So I did start working out this week, but I've worked out once, so we'll see. But I do really want to continue that because I do know . She's getting bigger. I need to get some muscles on my body and I also want to be on Survivor, the TV show. And I will be on there one day. Oh my gosh. I'm getting muscles for Avery and then also for Survivor. They did not choose me for this round, but.

Rhandyl: Yeah, you already are a survivor. 

Deonna: Oh, I can't wait to see. Oh my gosh. I have tried out now for six. If you make it, you have to. 

Abbey: Six seasons, I've tried out and I got, I can talk about this because they didn't call me, but they did call me back this time. So I did get one a little like step closer. Ooh. Maybe next year. That's so cool.

Deonna:  I have never heard of somebody trying out for a reality show. That is so fun. I would definitely have to watch if you got on there. 

Abbey: I want the million dollars y'all. I want the million dollars. Yeah. Look, you don't eat, you don't sleep. It's hard having to like. Get people on your side. I'm like, this is what I'm doing every day. I don't sleep. I rarely eat. I have to convince these doctors to get me what I need. Convince insurance to get me what I need. This is I was made for survivors. So I'm, 

Deonna: it's just not my time yet. When it's time, it'll be there. You're gonna be like the leader of an alliance or something. That's it. I really will. I really will. My son loves that show. That is so funny. Yeah. Yeah. You look all nice, but then, underneath you'll be like, I'm going to get you, but I'm going to get that million dollars and I'm going to do what I need to do. And it'll probably go towards Avery. That's it. Oh man. 

Okay, so what are some unexpected or surprising positive things that have come out of being a disability family? 

Abbey: I think just the joy of finding out that life can be so joyful. And what that means is joy is not found in a situation. If it were found in situations, we would all have a difficult time, right? Because most of our situations are not joyful. So it's really taught me to lean into my faith. And even in a time where you don't want to, right? Because why, right? That's a big question. Why does she have to suffer? But I think too being able to find joy in such difficult times has been the biggest takeaway that I've had from living as a disability mom because you can't wait until good times come, you have to find joy where you are and find things to be thankful for and where you are.

And in turn, it's taught me to be thankful for things that. Maybe parents with only typical children would not be thankful for. Would they be thankful, for their child making noise? No, but me, I hear Avery babble, and I'm like, oh my god, thank you so much. I get to hear her voice. And it's taught me to be much more thankful for Itty bitty things that I 100 percent would take for granted if not for this life.

Yeah.

Rhandyl: I 100 percent agree with all of that. Yeah. I feel the same way. It's, yeah. It definitely changes your perspective on life in general about the little things and how important they are and not to take anything for granted. 

Deonna: Sometimes I wish I could go back and relive some of my life. With this new perspective, because, I had an older son like you, and I was always stressed out about stupid things, and then now, you just, you look back on your old self, and you're just cracking up really? I was worried about that? Or that upset me? And it's just, it's so funny, but yeah.

I like your comments about joy because I used to think joy was the absence of any trials or struggles or anything like that. It was just for people who are just coasting through life, , I've seen this quote that says joy isn't the absence of pain, but the presence of God. And I do think that is very true. And , I can definitely see that in what you share. And, even on your social media, what you share. 

Abbey: Yeah, that's very special to hear you say that, because that's exactly what I want to do is show people that you can find joy in the midst of whatever journey you find yourself in, even if it's not a. Joyful. Oh, yeah. Joyful. Or one you would think would be joyful. Easy one. 

Deonna: Yeah. An easy journey. It's not going to be easy. Definitely not easy. None of us are going to have an easy life. That's right. One way or the other.

Rhandyl: Abbey, you've mentioned a lot about your caregiving role. , I know you live in a different state so , Deonna and I both have nursing in the home and has Avery ever had nursing? Have you ever had home health nursing? 

Abbey: No so I'm actually in the process of trying to get approved to be her nurse. Yeah. 

Rhandyl: That's a, yeah, see the state of Texas doesn't allow that, 

Abbey: yeah, I just found out last week. That's nice. I called like the state and I was like, is that legal? And she goes, yeah, it's not illegal. Yeah. And I said okay, then nobody's going to do it for the last eight years, right? Very aware of what she needs. We've never done it. I will say I am fiercely independent is too nice of a word. I'm not really good at accepting help. So I think that's challenged me in a lot of ways. Probably not always for the best. But I've brought her to things I probably should have keep her home for, but it is hard to find in a rural area. There's not as many people to ask. There's not as many, it does make it, it puts a strain on things for sure.

Deonna: Oh yeah. Yeah. It'd be really difficult to find the nursing and yeah, cause we live, like I said, in a big town and me and Rhandyl are always like, Oh my gosh, I lost a nurse.

And then, five months later you're finding one. 

Rhandyl: Yeah. It's already a struggle here. But my husband and I, we grew up in a very rural area and the panhandle of Texas. And we have future aspirations prior to having children to move back closer to family and be in more of a rural community. But we really can't because of. All the support and medical needs that my daughter has to have, but I also, like you said Like having the control I've said this so many times on so many episodes But I think the very hardest thing for me raising a disabled child was accepting the help and the nursing staff like That was the hardest and continues to be really hard and there's a lot of I still feel like there's a lot of guilt for me with it, but at least for my situation, , it is what it is. And it's been a blessing. Um, Sometimes it's a hot mess, but yeah, so I was just curious about that. Yeah. 

So what or who has helped you the most over the last eight years with your daughter ? And second part of this question is what has helped? Avery the most, do you believe?

Abbey: Yeah can I say God? Yeah, definitely. That's what I would say. Definitely, leaning on God, I honestly am never closer to Him than when she's not doing good. And that's It's awful to say, but God knows it's true, like, when she's doing good, I get so caught up, I'm thankful, and then you just forget how bad things can get, and then we take a deep dive, and seizures get worse, and I hadn't slept in five nights.

And then I'm like, God, please give her some relief, God, please give her some relief. So obviously we would not make it without God these past eight years. And even on things that I will never get the answer to this side of heaven. On the why she must suffer and, why her, and she's never done anything right. But I do know that God has a purpose for her life. I know that she touches so many people just by existing. Just by her resiliency and her joy and just a single smile , can just do so much for people. So I do know she has such a a big life. And I'm just very thankful that I get to be her mom.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.