Parenting Birth Disabilities vs. Acquired Disabilities

Episode 4 - Birth Disabilities vs. Acquired Disabilities

Rhandyl: Hey everybody! So this episode we are discussing the differences between being born disabled and acquired disability. Some find out about disability during pregnancy.

Others are not discovered until after birth. And then some acquired disabilities progress slowly. And then some are are sudden- like injuries, things like that. 

Deonna: Yeah, we're basically gonna talk about how these affect the caregivers differently, or if they do at all. If the trauma is different, if sometimes we might feel envious of what the other side is going through for certain reasons. And then we're gonna discuss what our own differences are from a personal perspective and this discussion is just meant to be this open-ended thing. We want to hear from our listeners how they feel, or if they feel differently or the same as us. And so, we would love it if you guys would go to our Instagram @RaisingDisabledpodcast after this and let us know what your opinions are on this.

Rhandyl: Yeah, so we're both gonna talk about, the initial shock. And so for me, my daughter, is there really a way to mentally prepare? And so, I've thought, oh, you know, if I, if I would've known during my first pregnancy that she was going to have a disability. For me now, after having two children, I think for me that it was a blessing that I had no idea throughout my pregnancy.

Because after experiencing what I did with my first child, my second pregnancy, I had lots of anxiety. So, I think looking from my perspective now to then, I think it was a blessing that I, I did have no idea during, during my pregnancy. But then after she was…

Deonna: you got enjoy your baby showers and not Yeah.You know, all those things. 

Rhandyl: Yeah. Literally my baby shower was one week exactly before…

Deonna: Oh wow. Yeah. You barely got to enjoy that. 

Rhandyl: But then of course after she was born, it was just initial guilt. Like what was I, what did I miss, you know? Yeah, was, there's something that I did during my pregnancy? I had the flu during that pregnancy, my mind went, all these places, you know, is it the flu? All that, the meds they gave me for the flu. Yeah. All the things you start thinking of every little thing that you put in your body during that pregnancy. Like, what, what could I have done to change this, you know? Mm-hmm. Should I have listened to my body better? What was I missing? And so it wasn't like anger at all really towards my OB. It was all just, I just was guilty. I felt like I was to blame initially. And of course there were so many questions because she did come so fast and… right, so there were lots of tests that, they were checking her and me for any sort of infections and all sorts of stuff. Blood draws-I had all sorts of tests done and, of course, no answers from those. Of course. 

Yeah, so those were the two big initial shocks- right after, for the first couple of weeks. And then just so many false hopes. I mean, I could go on and on cuz even to this day we still have false hopes. And it seems like every day just not having like a prognosis with Remi’s condition makes it hard. And so, oh yeah. For example, like I described her continuously having to be re-intubated cuz she couldn't breathe, you know, right. From a doctor's standpoint, when they're looking at the ventilator, she's, she was breathing over the ventilator with all the numbers. It looked like there's no reason she, you know, so we were very first told…

Deonna: Yeah, they do that and you get excited. Yeah. For, you know, no reason.

Rhandyl: Yeah. So I mean, initially, for example, they told us, “Oh, a 32 weeker, she'll, she just needs a little respiratory support or a few weeks time. Usually, nyou know, usually on average 32 weekers- three weeks hospital stay, and so, oh man. We were like, oh, yeah, we can do that! and then…

Deonna: Not even close.

Rhandyl: No. And so, then the two month mark when we decided to make the move from Lubbock to Houston was, it was a huge, uprooting for.. right, for me, especially and my husband, 

Um, like I mentioned previously, it's nine hours from here to nine hours from where my entire family lives. Mm-hmm. But Yeah, so, and I was working full-time up until then, so I mean, it was just an entire life shock…yeah, you know, my lifestyle, it was a like a free lifestyle if if you will. Like, I mean, it, it was just my husband and I and yeah, yeah, we worked and we had, jobs, but it was very much a “you work to play type situation.” Mm-hmm. And, and you know, every weekend we were going somewhere, traveling, whether it was just, you know, back home or just, you know, we were hardly ever home when we had the chance to get away and Right. I don't know. So just anyway, so we were, when we went to Houston…

Deonna: I didn't think about that. That's a big, big change, just becoming parents in general, but Yeah. Then you add that on top of that. 

Rhandyl: Yeah. Yeah. Not only do you become parents for the first time, but it's definitely a totally different scenario Yeah. ..than a typical newborn experience. Yeah, so moving to Houston was huge. And my husband, at the time was doing shift work and so he would work six shifts on, so six days in a row, and then he would get eight days off. Right. And so two of those eight days off were spent driving. So he was basically working for six days and then he would be with us for six days. Right. And he did that consistently. His work was really gracious in allowing him to be able to make that schedule so that he could be with us every other week. Yeah. And so, yeah, he did that literally for the months that we, we were in Houston. right. And we had to do that because we had to have insurance. We couldn't just, you know, stop. Yeah. Not only that, but I mean an income. But you know…yeah. Remi especially, all things, we needed medical insurance. And it was just getting through that, navigating finding housing there was a challenge. Mm-hmm. just a whole unknown; the big city and Yeah. Just, yeah, I was clueless. 

So that was definitely probably that was my initial shock was just, oh my gosh, having a baby at 32 weeks and then literally, just domino effect, dom…. Like shock after shock after shock, after shock. Right. And then, get to Houston and then there was still shock, but Yeah. So initial, yeah, we just still, there's so many, so many unknowns. So, yeah; but yeah, ut what about you, Deonna? I know our stories are completely different and.. yeah, I can only imagine your initial shock. 

Deonna: I mean, we were already parents because we already had our son, so it's not like we were out doing whatever we wanted. And then, you know, when you have kids it's different.

But when she was born, she actually had. A little problem that we were having to go get MRIs for and stuff, which we're pretty sure is probably connected to what happened to her later on in life. But you know, she was born healthy full term. So in my mind, when you're born full term and your kid's healthy, they're gonna be healthy forever.

There's no, there's nothing that's ever gonna happen to them because that's stuff that happens to other people. And I mean, I just never in a million years thought that was gonna happen to us and. So of course, I mean it was, it was obviously a huge shock because she was one way and then she completely changed, within a matter of hours and that was really hard. It, it changed all of our personalities. Shock will do some crazy things to you. I don't know if new, if you would consider, I mean you have PTSD probably from all the things you've been through, and we'll talk about that a lot in this podcast. Oh yeah. What that was like um, living with that.

But we had so many horrible triggers that happened within those first few days and then, you know, maybe four months to a year after. But we all changed, like part of the shock for us was our. We were changing along with her, like she was going through all these changes, but then my personality was changing, my husband's personality was changing. My son was having to grow up overnight. There was no, you know, time for him to adjust to the shock of what was happening. And I, I can't imagine what that felt like for him.

But I'm sure this probably happened to you in a way too, but when your kid gets hurt and it, it's all over Facebook and things like that, which part of that was me putting that out there to try to update people who wanted to know what was going on. But she had this massive I don't know the right word, but just like outpouring of attention and she all of a sudden became, there was this big like spectacle made over her overnight. I mean, before she was just this kid that a few people knew. And then overnight, thousands of people are talking about a. You know, my daughter, so that was also really shocking, having people just know every detail of our life. And I'll explain this maybe later in another podcast episode, but. You know, we, we put our kids' information out there, not necessarily because we want to, but because we are forced to, because so many people are wondering what's going on. So we start these pages or do these things, you know, so that we're not having to answer hundreds of texts per day. But you know, that was kind of a weird thing too. Like part of the shock was just how interested everyone was in it and having to keep everybody, just daily informed. I mean, you went through this too. You, we still do this.

Rhandyl: It’s a full time job. I mean, yeah, but it made, it, it made life easier. You’re already going through, so when you have a chance, you, you just type up like a good update and then it's just easy to just launch it to social media so that you know…but then, then you're like, oh shoot, I posted it to social media and I didn't text my family first, so then they're gonna have to find these things out via social media. But it, it is, like you said, it's a weird thing because.. it's not, sometimes you're so exhausted and so mentally fatigued that you don't want to, you don't wanna update, you don't wanna have to tell everybody what y'all are going through. Yeah. But you feel, kind of like you said, forced in a way, but it's more, yeah, it's kind of, it's hard to explain unless you've been in that situation.

Deonna: It’s not like we want to update 24/7, but I, I mean, it just was weird because everyone was all of a sudden paying attention to us in a way that no one cared before, you know, it just, it was, it was different. 

Rhandyl: I never thought about it from that aspect because, yeah, when Remi, it was just, that was, you know, Team Remi, it was from the beginning.

Deonna: And so that was, you know, that was weird. And that is still weird having people pay so much attention to her and, we'll, we'll talk about this someday, but, you know, for the other sibling that can be really hard. But that's a story for another day.

But and then, the, the other just part of the initial shock besides like the trauma of what was going on was, She just, she went through this really painful change in her life and it was just, it was horrible and it's still unfolding. I mean, you know this because of some recent things, like you never know what new problem you're going to inherit next week or two months down the road, it's just, when you have a kid with a disability, it's fluid and it's changing. So it's, it is scary. That initial shock was really bad, but we were not even aware of how that was gonna unfold over the next few years.

So, I mean, I think that's kind of where we're both at with the initial shock. And we would like for you guys, if you have a kid with a disability, either you know they were born with it or acquired, let us know what that initial shock was like for you guys, because I think it's, Different for all of us and then also exactly the same so..

Rhandyl: Yeah, definitely there's gonna be similarities, but everybody's story is their story. Mm-hmm. So kind of on the acceptance end, it's kind of hard, especially in our situation with Remi, because honestly this is probably one of the most difficult things that we deal with is the acceptance. And that we struggle, we struggle with this because, yeah. You know, we accept the fact that she is trach and vent dependent and that she's developmentally delayed, but on the other hand, it's hard to accept that she'll be totally dependent on us as she grows up, because she's still making progress, even though it's slow. It's just the unknown of her future is so hard to accept. Because, like I said, there's just, there's so much unknown, you know?

Yeah. So I mentioned earlier, we had all these false hopes and we were told when she was at Texas Children's, you know, cuz her main diagnosis is tracheobronchomalacia, a floppy airway. And so they tell families with kids, and I think it's statistically this is probably the case, but kids with tracheobronchomalacia, typically by school age their symptoms resolve. And so, wow. they say, you know, as your trachea grows and forms and your cartilage…well, we were first told, you know, 18 months, then obviously that was not gonna happen. You know…

Deonna: they keep pushing it back…

Rhandyl: Yeah. So then, when that 18 month mark came around, they were like, by school age, you know, she should be she shouldn't need her trach anymore. So then we had that. And then, we would have her airway scopes done annually. And that was even.. right. So after, she got home and we had these routine airway exams and even our ENT would tell us, you know, this collapse. I mean, it would, it, it was better, like it wasn't a complete 98% occlusion anymore. Right. It was, but it was like 90.

And then, so by the time she was two we had an, I remember we had another scope and it was still really bad. And I remember ENT basically was like, you know, well typically, you know, by age four… And I was like, at that point I was like, NO, I'm not doing this anymore. So I started researching online and found out about this airway surgery- It’s a posterior tracheopexy. Anyway…

Hmm. I contacted all the people and got insurance to approve it. So, in January of 2019, people thought we were crazy for going to Boston, had the procedure; actually recovered pretty well. We were home in February of 2019. Yeah, we were there for about a month. Yeah. But, so that was, man, that was our cure-all. 

Deonna: It's what you thought was going to make it all better. Mm-hmm. 

Rhandyl: Yeah, we were like, as soon as this surgery, she's gonna be able to breathe all by herself and not need a trash anymore and a vent. But, unfortunately, it was not the cure at all, but it did give her the ability to come off of the ventilator. Right? when she's completely healthy, no sickness. She can just breathe on her own while she's awake.That's cool. And so she, she can do that now, and she can vocalize with mm-hmm. A speaking valve, now. Her settings are so much lower on the ventilator than they were before the surgery. I bet.  There's so many things good that came from it, but it definitely was not the cure-all. I know.

So accepting that after was hard because we went through all this work to, you know.. this was gonna be the, this was gonna be it, but..

Deonna: Yeah. Um, Well, and it, it costs a lot of money to go all the way to Boston from Texas. Yeah. And stay and do, I mean, you know, those are things people don't think about.

Rhandyl: for sure. And so other things, you know, I had friends that were expecting and had babies around the same time as Remi. Oh man. So watching those kids that were born just right around the same time, watching them typically develop and now they're in kindergarten and… mm-hmm.. first grade, starting little t-ball games and extracurricular activities and it just… it hurts. Yeah, it does. And so I know that kids, her, like she's not obviously developing like kids her age, but I just can't help but think back toplanning my my life, yeah.

Deonna: What you thought…

Rhandyl: when I was pregnant. Yeah. So I mentioned in one of the earlier episodes about the poem Welcome to Holland by Emily Pearl Kingsley. This poem it really hits home for me in the aspect that she kind of explains it like, you're planning a trip to Italy, your whole pregnancy, and then it's like you fall asleep and you wake up when you land, and the flight attendant says, “Welcome to Holland”! And you're like, yeah, wait..

Deonna: I didn't wanna come here.

Rhandyl: ..check my ticket. Like, what? No, that's not where I was planning to go. Yeah. But basically it's just talks about, you know, you ended up somewhere that you weren't expecting and mm-hmm. You can, you can grieve it or Yeah. You know, you can spend your life mourning it or, f you do, you may never be free to enjoy the very special things about Holland. So, yeah. Yeah, it's that's kind of the way that we feel a lot. 

And it's like I mentioned earlier, it seems like every few years we're getting yet another unexpected diagnosis. And so, it seems like every year our expectations change because of Yeah, either something new we learn something new she does, whether it's a new communication, you know, she’s got a new communication device now, and so we're definitely progressing in our communication and or she does something big developmentally and it's like, oh, you know, or she has a event happen and ends up in the hospital and we get…Yeah. A new diagnosis and you're like, oh, okay, well we weren't expecting that curve ball, but it's Remi. No. 

So yeah, just she does just kind of a, yeah. Just to kind of sum that up is when she was she was still, I don't even know if she was six months, but we were at Texas Children's and her pulmonologist he, he just kind of, he nailed it on the head when he said this..he said, okay, so here's the book and here's Remi…and Remi says, Remi says, hold my beer! And so we, I mean, it seems like every part of her medical journey, whether it be from a therapy aspect or medical, Yeah.. everyone scratches their head and has to either throw out hypotheses or like, yeah, I don't know. I don't know. So, you know so 

Deonna: Which is so hard here. It's, yeah, when they don't know they're supposed to be smart and know everything.

Rhandyl: I just got to get to where now I'm like, oh, here she goes, hold my beer again. So, ugh. Yeah. Yeah. 

Deonna: The thing when it comes to what happened with us, which if you didn't know what happened to Remi, that was in episode two, and then my story's in three. But I think I've been around a lot of parents whose kids were born disabled and I've noticed that I think I know a lot of moms whose kids have gotten hurt or acquired an illness or something, and I think we live in denial for a lot longer. I don't know if we live in denial forever. I still feel like I'm a little bit in denial.

It just depends on the day. But, we were definitely told she is not getting better, get on board with this. Let's all move on with our lives. And me and my husband accepted that, pretty quickly, sort of. And then we got to Lubbock to home and we start researching and our, you know, families are researching like how to fix paralysis - like that's something that can be fixed, you know, and um, We, we had made all these crazy plans to go to Louisville, Kentucky because there was this famous, physical therapy place that was healing kids with paralysis. And I mean, we had made very detailed plans on how we were gonna go, and it was supposed to have been I think last, last semester or something. Wow. I can't even remember, but

Rhandyl: I don't think I ever even knew that. 

Deonna: Yeah. I mean, because we were sort of embarrassed like that, we were still holding on hope for that, you know? Oh. And so we made all these plans and it was pretty concrete plans there for a while, and then, it just, we talked to some of her doctors and they were just like..you’re going to go spend $150,000, $200,000 and she's not showing any signs of improvement, you're, it, it's gonna be a waste of time, money, energy, you're gonna be, your hopes are gonna be just dashed again. You know? And it was really hard to listen to them and know, you know, they're probably right. This isn't something that's worth doing, and so, like we were holding out hope for all these silly things, but we just started to realize, you have to trust what the doctors say. 

And, but I, I still walk around thinking that she's magically just gonna get better. I mean, when I dream about Allie, I've now, when I dream about Allie, she's disabled. She's in a wheelchair, you know, the whole reality. But for the first year and a half or so, she was fine. So I'd wake up every morning and she was like, disabled, you know? And that's a hard thing. But, when your kid gets hurt, you really do think she's just gonna start moving her fingers one day. She's just gonna start…and I mean, that, we know that's not real, but you do live in denial. I, I'm, I may never fully accept this and that's, that's hard. I, my family, there's a lot of my family members who have not accepted this and friends, they just can't do it because they knew the old her. So it's really hard too. That's really hard to accept something that your mind doesn't wanna accept. 

But, I think it's hard because it, it was a blessing and a curse having her be able to walk and talk and run and do all the things for the first four years, because it was a blessing because I got to see what she was gonna be like and that was cool. And I have these amazing videos and memories and pictures and whatever. But, you know, then I also had to like grieve that. And I tell people it felt like a death. And I've, I mean, I've recently lost my brother, I definitely know what a death feels like and it was, it was very similar. I'm not saying it's the same, but it, it was that traumatic to go through.

And you know, I remember one time sitting in the hospital in El Paso. So we didn't even really know the full bad news yet, but I just remember mentally just having this funeral for all the things that we thought she would be able to do and wasn't gonna be able to do. And I know y'all probably have that Wow.

Yeah. Mental funeral earlier obviously. But you know, it's hard when. And people are always like, oh, you know, she can do anything she sets her mind to, but we know that's not actually, yeah, I mean, we like to be positive and I will try to get Allie to do anything she wants to try to do. But there are just, there's doors that shut and, you know, that's something that we have to be okay with whether our friends and family are or not, that’s, that's our reality. 

And you know, like seeing videos or photos of her in the months leading up to the accident, which there's a million because it was during Covid and we were bored and we just, you know, were in our house all the time making videos. And there's a video that I shared of Allie where we were doing like fake presidential videos of my son and her and I mean, she wanted to show everybody in the hospital that video. Well, that was the last video I had of her, and so I didn't wanna watch that. I still really don't like, I mean, I like the video. It's really funny, but I don't wanna watch that. I mean, there's trigger. Oh yeah. I mean, I'm just, oh, sad. I live I think me, and you've talked about this before, but. Like there's our life before this happened and our life after this happened.

And when I look at any of those before pictures of her, there's just this difficult cloud of sadness over it all. And so people are like, well, at least you have these photos of her and videos of her from before. And they don't realize that it's easy for them to look at those photos cuz they're not as connected to her as I am. Of course. But it, I mean, to me those pictures are still painful and I hope that, you know, five -10 years from now, it won't be that way I'll love 'em. But I mean, even for her, there's certain videos where she just says, no, no, no. And she, I mean, she won't look at the videos, the photos, she hates ‘em.

So, but, like we were saying just a second ago, she went through this painful change of life. It's still unfolding. We don't know how bad it's gonna get. It's gotten better in some ways and worse in some ways. So it, you just, you never know what tomorrow holds. I mean, right now she's in there with our nurses asleep. You don't know what tonight holds it. It's really is. Amen. Yeah, it can get real dark real quick. But yeah, I just, I tell people that we live with one, like with our heads in the clouds and our feet on the ground in reality. And so every mom you're gonna meet, we all just sort of… our heads in the clouds hoping something could magically get better and then our feet are in reality. And you know, it, that's a tough, tough line to, go down because. You wanna be just in hope, and that's not reality. And so to me, hope, can I, I have hope, but sometimes that's a four letter word to me because it's just, it's hard. It's hard to have that hope.

But I spoke to other injury moms and they said we have a group that me and Rhandyl started where we're talking to a few different moms that either had kids get injured or had a birth disability. And when I was talking to some of these moms whose kids one brother was injured really, really bad and then another, her daughter was injured, similar to Allie, actually just a few months before Allie. And they said, you know, you just grieve for what was, what could have been, and, and I don't think that's much different than what you've been through. Like you may not have known what was cuz you didn't get to see that, but you, I mean, we all mourn like the what could have been. Yeah. What would they have been like if they hadn't gotten hurt or they hadn't had that birth, you know, disability like whatever happened, you know? Mm-hmm. So do you feel that way?

Rhandyl:  Yeah, for sure. I definitely. And not as frequently as I did in the beginning. It was way harder in the beginning to see normal typically developing infants. Yeah. …and toddlers and it's, I hate to say it's gotten easier to see, but definitely That's good. ..I still catch myself like, oh yeah, she would be, she, we, we could be doing these things. Yeah. If she was not disabled. So..

Deonna: well, and we have, I was thinking about seeing their classmates or their old friends be active or playing sports. I mean, like sometimes I go to school with Allie and being in PE is excruciating for me because Allie was riding a bike without training wheels when she was four years old. So seeing these kids do these things like playing and running around and I'm just like, oh man, she was so athletic, way more athletic than me. I am like, oh my goodness, terrible. But she, you know, I can't even hardly walk straight, but she, she was so athletic and then I just, she can't do any of those things and you're watching these kids, it's just, it's horrible.

But You know, I, I talked to some of these moms and they were saying they're, they're thankful for the years of like, of the carefree life before the injury happened. And I am, I mean, I look back on our life and I'm just like, oh man, I'm so glad we got to have those four years where things were easy and not so hard. But I, I think what's hard with, with the with us too is they lose independence. They, they had that and then it gets taken away. And I think that's hard for the parents. It's hard for the actual kids if they whether, especially cognitive.

Rhandyl: Especially if they can remember it, you know, Allie can remember when she was a typical kid and running around and so Oh, totally. That's a whole other aspect of Yeah. …it being that she can remember and she knows. She knows completely different. 

Deonna: Well, and I'm thankful that she's still cognitively the same. My friends who daughter who got paralyzed, they're both the same. But I know a lot of kids who lose even their ability to speak or communicate at all really and that is just next level. Because they lost their way to even speak to their parents or whatever. And I just, oh man, that is something that is just so difficult. But like one of my friends was telling me her daughter's in college and she lost that independence rr, you know, when her friends just wanna spontaneously go on a trip, college friends, she can't just jump in the car with them and go. It’s just, it's this effort to include them in everything. And you know, like, Allie can't just go to a sleepover to friend's house. She can't even go play at a friend's house unless I go. exactly. We're gonna have to be the party house that everybody comes to play because, and that's already happening because, you know, that's just our reality.

She can't just run, go play with a friend or do any of those things. So I think that's probably one of the harder parts for an injury or something is just, they were used to a certain life and then that got taken away and they're just, and they're mourning it and, and the parents are mourning it too. And I mean, it's, I think it's, that's the hard part.

Rhandyl: Yeah. I really do think it is, you know, it's a blessing in disguise, that Remi doesn't know life any differently, you know? Yeah, yeah. Even though we know what could be different, but Oh yeah, she has no idea. Yeah. I mean but y'all do. Oh well. Yeah. 

Deonna: That’s the hard part, of course. But yeah, it does. It is nice sometimes when they don't fully get all of that. And as you get older, I think like Allie will be used to some of that by the time she gets older, but she'll still know when she's left out or, yeah. You know, no matter how much you try to include a kid like Allie, it, it's, they're gonna get left out. That's just the way life works. Yeah. But..

Rhandyl: I've been asked like, would I feel different, accepting if Remi did have like an official prognosis or some sort of a theoretical prognosis, right? Yeah, I'll never know. But I really do wanna discuss those topics with families that do have specific diagnoses that their kids are born with or acquired. yeah. That have these prognoses and how, how accepting that is? Because, I mean, we are just speaking from our personal experiences and we.. Yeah. …are very interested in all of our listeners experiences in this, you know, this comparing type situation.

And we in the beginning talked about like, is there something that you, you know, one side is envious of.. Yeah. …compared to the other. And I think for me, I catch myself being definitely envious of those with verbal kiddos that are disabled, but they can verbally express their feelings. Yeah. Fully, fully cognitive. Oh, yeah. I wish that I could have a conversation with Remi and.. oh yeah, for sure. I wish I knew what was going through her mind. oh man. I have to guess all the time. She's very good at communicating with her body language and Yeah. But there's sometimes that she just cracks up out of the blue and if I knew why, or on the other hand, she's screaming her head off and we're like have the Ambu bag ready. what's wrong? She's hurting? or she's, what happened? Did we choose the wrong show or, you know?

Deonna: Yeah. It could be nothing or something really bad.

Rhandyl: Yeah. So I think that's the biggest thing that I'm like, man, if I could just communicate better, which is communication is definitely improving slowly, but it is improving.

And so another, thing is just kiddos that are disabled, but they're developmentally on track yeah. . Yeah. But then on the other side, like, so Remi's six years old, almost seven, and she crawls everywhere. Mm-hmm.  But she walks with uh, Walker with help. Right. You know, and I think, we could go on and on and on and on and on about, you know, Who's got it worse or who's, no, not that, but you know what I mean? Like..

Deonna: No, I mean, I've, I've thought about that. Like there's times where I catch myself being jealous of other moms with disabilities. I mean, like, obviously we all have had moments where we're jealous of other moms whose kids are fine that we're not even talking about that. But No. Yeah. I mean, that's like, duh. Yeah. But, I've had times where, and you're saying, you know, you wish you could talk to your kid and I'm glad I can talk to my kid. She's developmentally in the classroom with the other kids her age, and so the only difference with her is the crazy medical aspect of her body. But I mean, it's, it's hard because, you know, I think a lot of people are like, oh, I wish I knew what my kid was thinking, but, I know what my kid's thinking and it can go dark real quick. Mm-hmm. And she will tell you stuff that I just, I mean rips your heart out; that you, I mean, you're just like, oh, I did not even really actually wanna know you were thinking that cuz it's so hard to know that. But I know what you're saying though. I, I definitely, yeah, get that. 

I've been jealous of parents who just didn't know any different with that kid. Like their kid was born that way. They got, you know, they accepted it, move on. And that's just who that kid is. And I've been like, man, that must be nice to not know that there was this easier version or this version. Mm-hmm. That, and it's not that you like better. I like version, I like both versions of Allie exactly the same. But I mean, she was so carefree and like silly and stuff, and the silliness is coming back. Thank goodness. Mm-hmm. I thought the silliness had died, but it, it's coming back. But you know, I, I would definitely never give up those four years of her being healthy. But, there are times I wish she didn't understand everything that was going on and could just kind of be happy and, you know, that'll be a battle we face forever. And I've talked to other moms whose kids have had this big change and, you know, it's just a battle that you are fighting every single day. I feel like me and my husband's life mission with her every day just to like, make her happy and laugh and smile and joke around and stuff. And that's exhausting. But that's what we all do for her because we know there's some, some pretty dark thoughts going on in there in that little head or hers.

Rhandyl: Oh, yeah. See, and that's just another thing I never really thought of it from that perspective, but it's because Yeah. Yeah. It's your perspective, so..

Deonna: Yeah. No, it's, it's, it's difficult, but I, I think that what we're trying to say today is just regardless of when the disability started. We just grieve, we grieve this life that we had envisioned for our kids. We all thought we talked about the poem Holland. We all thought we were gonna go to Italy. You planned that during your pregnancy. You never think something's gonna go wrong. That just isn't something that's going to happen to you, and we, we just assume they're gonna get married, have kids live on their own, do all these things. Cuz that's what, it hasn't been promised to us, but that's what we assume. Right. And then when we find out, we, we won't, like you said, you wake up in this other country, Holland. We were joking around before we started talking. I feel like with me, I was in Italy with my family and we basically like get kidnapped in the night, in the train, and are taken to Holland.

I mean, that, it was just a big change, but it, it feels like this death that we have to grieve and then others don't know we're really doing that all the time. Especially if you're not as open as… Yeah, I mean, I've chosen to be pretty open about all this and it's not easy, but a lot of parents suffer in silence and they have this sadness and silence and it's, it's tough.

Rhandyl: Yeah. And that's why we're here. That's why we, we started Raising Disabled because for you that feel alone and are sitting in silence and listening to us, you know? We're here and we're happy to be here to be your voice. We just want everyone to belong.

The more feedback we get from our listeners, that's going to help us kind of navigate where we're going next with this, because this is the beginning and life is, life is fluid. And so we're very, we don't have any sort of hard knock outline for how this is gonna go. We're just kind of flying by the seat of our pants and we really we're really here to, to get advice and, and learn from you guys, so..

Deonna: And we're thankful for you guys who listened to our first three. We were so excited about how many people listened. I thought we were maybe just gonna have like our moms and that was it. So we were pretty excited that more than just our moms listen or our moms listened a lot of times; one or the other, I'm not really sure, but, but it was good. So we are just so thankful for you guys for participating in this.