Rhandyl's Story

Deonna: Hey y'all. So this week we're gonna talk about Rhandyl's story and when she began raising disabled. So, I'm gonna just ask her some questions and we're gonna get to know Rhandyl and her daughter Remi a little bit better and kind of see where she's coming from because I think it's really important in this podcast for you to understand our kids' diagnosis. Because that's where all of our experiences are gonna be coming from. And so, when, like when did your raising disabled journey begin with Remi? 

Rhandyl: That would be August 27th, 2016.  That was when, we call her Remi but my daughter's name is Remington. Remi was born at 32 weeks gestation. Pretty traumatic birth. She was non-responsive and intubated in the delivery room less than a minute after I had her. Um, very fast and furiously non-medicated delivery. Kind of funny, we didn't, it was our first kid, but we had decided not to find out the gender and my whole pregnancy.

Deonna: I didn't know that. I didn't know that.

Rhandyl: Yeah. So my whole pregnancy, I knew I was having a boy. So we joke about it now, from day one Remi was uh, just up for some surprises, that's for sure. ‘Cause literally like they just took the baby off of my chest and the NICU team was working on her. Oh, it it, we didn’t…and so all I kept asking was, they were just like pressing on my stomach and everybody was working on the baby and I just, all I kept asking was, what is it? Like, what is, what is it? And then the nurse practitioner from the NICU team yelled out, it's a girl. And I was, you know, shocked. Shocked in a thousand ways! Um, at the time ‘cause my pregnancy was a normal pregnancy as far as I knew. Um, yeah, all the anatomy scans, everything was, was normal. So there were no red flags. I just went into a very quick labor at 32 weeks and she was born. Um..

Deonna: As you were delivering, did you know that something was wrong or did you just think you were going into premature labor?

Rhandyl: I, well, obviously I was going into premature labor but I just had this gut feeling that something was wrong. Um, yeah, it was just something about something in my gut… and I, I was just, I honestly… they had me sitting in a triage room and I was having extreme contractions and I told my husband you've gotta go out there, his baby is coming. You've got to go tell them.. Right? ..and they reluctantly came in there like and checked me and I was at seven, at a seven, and they immediately were like, oh, get her to a delivery room. Yeah. And within this kind of a, a funny part of it, they were like, do you want an epidural? And I'm like, yeah, and duh comes I’m in so much pain. The anesthesiologist comes in there, I sign the paperwork, and the doctor was like, let me check her one more time before you poke her…and they checked me and I was at a 10 and they were like, Um, sorry hun… like it's too late. And so, the anesthesiologist, I remember him walking out of the door and I was like, all right, stirrup up! This is happening. And all I had in my head was, I got to get this baby out. Something is wrong. Like, yeah, something is wrong.

And so it didn't take long and she came, she was, she was three pounds,15 ounces. Wow. Um, and yeah. So they had to intubate her in the delivery room. Uh, she wasn't breathing, she wasn't responsive.  They got her intubated and got her back. There was no crying, she didn’t, she just was just kind of just laying there. Just, yeah…and I saw her for a split second and then they rushed her to the NICU. And it took a long time for me to be able to go down there cuz I was having a lot of blood loss and, I was vagaling and passing out and oh…so that was a whole thing, um…

Deonna: Tell people what vagaling means for people who don’t know what that is.

Rhandyl: So vagaling, so we, we all have a vagus nerve in our body that goes basically from top to bottom of our torso and, um, if you, If you've ever like thrown up or bear-down, like if you're lifting weights or something, you can like, get dizzy or actually lose consciousness. Right. Mine, I think was happening due to, like, they did give me some pain meds after delivery and on top of me losing a lot of blood cause I had a retained placenta, that I couldn’t deliver. And so that was also making me bleed a lot more. Oh my gosh. So it was just a lot. And I ended up having a D and C a week later to get it out. Yeah. Um, anyway, but yeah, so that's, it took, it was like 12 hours before I got to go down and actually see my baby. 

Deonna: Well, and for people who've never seen someone get intubated, it is like, I, I'm trying to imagine what, seeing your tiny three pound baby get intubated because it's such this like violent process.  It's not this, I don't know. It's, it's not fun to watch on a larger kid, so I can't even imagine what you, or if you didn't see it, your husband saw, I mean, just watching that happen is so hard to see. 

Rhandyl: They were, she was just surrounded in medical staff, and my sister was in the delivery room and she was trying to take pictures and they were like, you need to stop. Oh, no. Like, you need to stop. But she was, she was, I mean..she didn't, like, we didn't, none of us understood what was going on, like the seriousness of it. I think my husband did. No, because  he's been in the medical field for so long. I think he knew the seriousness of it, but, he didn't, he's really good about keeping me calm. Um, so…following that, yeah, she was in the NICU for two months at our local hospital.

Deonna: ..and you were here in Lubbock, right?

Rhandyl: Yeah, here at our local hospital. Uh, she was in the NICU.  She was intubated that whole time. There were three different times that they, tried to take the tube out and she just, she couldn't breathe on her own. And the first two times I was present. and it was so traumatic, because, you know, her ventilator settings, everything, showed that, oh, she she, she's breathing good. Like we, she should be able to breathe on her own. Yeah. Um, so they would take the tube out and I would just watch her just get blue her and bluer and then they would have to re-intubate. And like she said, it is not a fun process to see, um, none of the inpatient processes with your children are easy to watch. Um, no, but yeah, those were, those were the big two. And the third time they had decided to, my husband was actually working that day at the same hospital and I told him, I cannot, I cannot watch this again, but I need you. Yeah. I need you. Cause he wasn't able to be there the first couple of times. Oh man. Because he was working.  So anyway, yeah Cole came down and I just sat outside the NICU and I just prayed and prayed. And, I think my mom was there with me.

And my husband came out, and he told me, you know, that it, it didn't work again. And he said that he brought it up to the doctors that it looked like when they would take her tube out, that there was, it was like, he described it.. ‘cause my husband has severe asthma. He especially did when he was a kid. He described it as like when he was having an asthma attack and he just couldn't get air in. Yes. He said if you picture like a plastic bag over your mouth, it's like you're trying to breathe in. Mm-hmm. Um, but you just, you just can't get air in. Yeah. And he was like, he was like, for some reason that's just what it looks like. Is there someone here, um, because this is, It’s not a large pediatric hospital, so we weren't sure if there was someone that could do, uh, a bronchoscope or visualize her airway in the OR. And, um, there actually was. So, we scheduled that the following week, and discovered that she had severe, it's called tracheobronchomalacia. Basically means floppy airway. Um,

Deonna:.. and you basically have to have to learn like so many huge words. I know, right? I know. I'm, I'm not that smart. I can't remember all these big words. Come on. 

Rhandyl: I know. And I have to like practice. Okay, how do you actually say this? You know, me too. Um, but yeah, so we found that out and it was like a 98% occlusion, basically. Wow. When she exhaled, her airways, just, her trachea…So our normal trachea's are shaped like a C..Mm-hmm..and hers is shaped like a U and so, um, it just doesn't have that extra curve. And so her airways were, and she was just, It was just closing off. 

Deonna: And so like it was just shut. Yeah. 

Rhandyl: Yeah. And so we had tried after that to do a CPAP  through her nose and that also failed, um, which was like a fourth re-intubation. And then after that, they started talking to us about getting a trach placed. Yeah. And of course, my husband and I, being in the medical field, we were like, we really want a second opinion, um, higher level of care. And they agreed and we were transferred to a larger hospital in Houston. And ultimately it was decided that she did need a trach. And so she had her trach and her G-tube, which is a little tube that goes into her stomach ‘cause obviously she wasn't able to eat my mouth ‘cause she had all these tubes in her mouth and for a while she had a tube that went through her nose to give her her feeding.

But that's not, something that, You wanna do for like, long period of time. So anyway, at three months old, she got her trach in her, her little G-tube. Um..

Deonna: so she was intubated for three months. Three months, yeah. From day one. That is so long. Yes, they were. Oh my goodness. 

Rhandyl: They said that was, you know, for an adult I mean, you can't be intubated more than a few weeks. No. And about three, three months is even a long time for a kid. Um, so yeah, that's very long. Yes. And it can cause, you know, just damage, permanent damage. And it, like the, actually the roof of her mouth is, a little elevated because of being intubated that long cuz they're so, you know, kids, babies are like pliable little plastic.So yeah, she kind of, yeah.  

Deonna: And it's really hard, hard when your kid's intubated cuz you can't see their face like at all. Yeah. I mean, you know, we, you probably didn't even know what she, she looked like really? 

Rhandyl: No, we didn't. The only time I remember getting like a good picture of her when they were actually like, re-intubating. I was like, oh, wait, before you stick it in there and like took a picture real fast and, and it was… like, so, um, but then that was the, that was the coolest thing about her getting a trach. If there is something cool, it’s being able to see her face for the very first time, at three months old. Yeah. yeah, like her whole face, get to kiss her whole face..  it was.

Mm-hmm. Um, it was, it was really cool. And she's a lot less fragile because trying to hold and, and cuddle a baby, that's intubated. It's like a three man team. Yeah. Process.  And so, um, she was a lot less fragile once she healed from those surgeries….and in the meantime we had… 

Because we still didn't know, exactly WHY?, because at 32 weeks gestation, yeah, she could have some respiratory stuff because her lungs weren't, you know, at that gestation, your lungs are kind of the last thing to develop. But typically, yeah, after a few weeks of oxygen and support, you should be okay. And so, We went through extensive genetic testing, all the MRIs, all the CTs, all the things. Yeah. Um, heart caths…and we discovered she, she did have, a PDA and an ASD, which are like small holes in her heart and a lot of that was due to being a little early. Right. They’ve since closed, you know, but we never, we were never, um, she never got a confirmed genetic diagnosis. So, honestly, all we know is that RemI is Remi and is a congenital thing. Um, yeah, that just happened and only God knows why Remi is Remi. Yeah. But she's developmentally and cognitively delayed. She's now six years old. She'll be seven in August and she still has her trach and her G-tube and her ventilator. So she, she came home on a ventilator. Yeah. So yeah, she was, she was hospitalized at Texas Children’s. 

Kind of to go back… for six months in their NICU. And then they transferred her to another floor, that was at the time called, the Progressive Care Unit and she was there for another six months. And…

Deonna:… is that like the TICU now, like we’re you’re kind of getting ready leave? It's like a transitional ICU. Yeah, yeah, yeah.

Rhandyl: So, um, reason she was hospitalized for so long is because we were going to be transferred back to Lubbock, which for those of you that don't know how large Texas is, um, Houston is, uh, a nine hour drive, yeah from Lubbock…and that's without really stopping much. So, It's really huge. And it's not like, oh yeah, you know, she's doing great y'all can just go home because there's not a lot of specialists. Um, there's more now, but there especially weren't a lot of specialists at that time here, um, the doctors were not comfortable sending her home,   

Deonna: Did y'all have to drive home when, when she got out? No. Or did y'all get to ride in the jet? We got to ride the jet and I'll get to that. Oh yeah, we, I like that jet. 

Rhandyl: Yeah. Yeah. The kangaroo crew. Yeah. Yes. Um, so we actually, they picked us up, yeah, at Lubbock in the NICU and then flew us home. But, so, one of the biggest reasons she was hospitalized for so long was because her ventilator settings were so high that there wasn't a pediatrician in Lubbock that was comfortable taking her, until she reached a lower setting.  yeah. And so we really just kind of rode it out and I, I made up my mind that I was going to be 100%, it was my full-time job, every day in the hospital. I was going to learn everything I could possibly learn, and more,  about her care, because I had been told, “you can't rely on your home health nurses to know what to do for your child” in this situation. And so, I think yeah, it's definitely on you to know. Yeah. And then teach them exactly. Even though they’re our nurses.

Yeah, yeah.  So, I just focused on, my, my job was to learn everything I needed to know to make our transition home the best it possibly could be. And also being the physical therapist assistant that I am, I was so, uh, on top of trying to get her to do the things, like move her around, sit her up, get her on the floor, no matter how hard it was to get the tubes where they needed to be. I was there and I was the psycho that was, even though the room was sterilized, you know, I was going around cleaning every piece of, I mean… I got there before they rounded on her every morning so that I could be part of the team and it took me a good six months to really learn how to advocate.

And, just realized, like I had, you know, there were a few times where my mom gut was like, I don't know, I don't think this is right. And then I wouldn't say anything and then it would end up being right. And, there was one traumatic experience where I was like, you know what? I don't care what they think of me. I don't care if I have the, the, you know, the “hard mom” sticky note on her chart because I,  Yeah. ..am going to follow my gut and advocate for what I feel is going on, or if there's something that I feel is wrong. Yeah. Um, so we learned a lot and that's also helped me.

Deonna: You completely change, like, you completely change as a person. I mean, you, when you have to,  advocate for this person who's helpless and can't do it, you, you do change. And I mean, having that hard mom sticky note on a, I mean, I'd be okay with that too. And that's definitely probably happened to me as well.

Rhandyl: Yeah. Yeah. And so she finally was able to get to the settings that everyone, the whole team, was comfortable with her going home. And  so she was flown back to Lubbock, and an ambulance picked us up and we rode on an ambulance to the house.. Yep. On November 14th, 2017. And it was a big party. Oh my goodness.

And, yeah, we had signs in the yard and there was signs in her room and, um, Then, AFTER we got home, that's when my, this was really scary, right? Yeah. So I kind of describe it as like “COVID scared” times 10 plus. Yeah. About germs, yeah. You know, this was pre-COVID so, but I, I didn't leave my house for three months, unless I was taking her to the doctor. My husband and I didn't sleep in the same bed for the first six months she was home and… Right.  I mean, continued to not do on very frequent episodes because of ..Yep. Nursing. 

So, uh,  so we have to have private duty nursing in our home. And what that is, for those of you that don't know, so due to the medically fragile complications she, she qualifies for private duty nursing and it's through a home health agency. And, you know, in a perfect world, you'll have a night shift nurse and a day shift nurse that, um, multiple of each obviously. Yeah. ..and for our situation, Remi qualifies around the clock 24/7 for that. And so, in the beginning, that was really hard because I was training, I mean, literally I was training these nurses how to care for her plus…

Deonna:…and you probably thought they were gonna know everything already? And that's just not how this life works.

Rhandyl: I had been warned, I had been warned, but I also had no idea how clueless, like, and I shouldn't say clueless, but every kid's different.  and especially in 2016, there was not a lot of kids being discharged from the hospital on trachs and vents. I mean, honestly, a lot of, a lot of kids like that passed away because there wasn't, yeah. You know, we're just now in this world like getting more, it's more and more common that, that you're going to see kids out in public with a trach and a vent. It's just,

Deonna: yeah, I had never seen anybody, I had never seen anybody with a trach until my own kid had one. I mean, it's, it was crazy.

Rhandyl: Yeah, and medicine these days, you know…we’re, we're realizing that they can come home and have a, have a, a quality of life. So, yeah. That was definitely the, the hardest part was about the first six months just trying to figure out how to communicate with nurses how to get used to having someone else in our home 24/7. 

Deonna: Okay, so when you got home after being in the hospital for over a year,  you get home and did you realize that the anxiety was gonna come home with you? Because obviously in the hospital you have it, but did you think you were gonna be okay when you got home? Or what happened with that?

Rhandyl: Yes, I, I had a very unrealistic expectation of how I was going to be able to handle, being home because it was something that you look forward to for so long and you get so many false discharge dates and they fall through. And at some point, you know, I basically never believed them when they said, um, a discharge date. And then it was like when they finally gave us the November 14th date. The ball was rolling in that direction and I actually was excited about that and, and, but I did not, I had no idea. I don't think anyone does. Once you actually get home and you're kind of quote unquote on your own, um, there's not a button you can push and the whole medical team is right at the bedside.

So I think that, I have always, even previously to my raising disabled part of my life, have been one to take it all and I can, I can do this, you know,  I'm gonna be okay. ..Just kinda have that personality where, I just more of an independent type person. I'm not, like, needy. But I was definitely not aware. I, I've never had anxiety and isolation, depression like I experienced the first six months to a year, um, that I experienced after bringing Remi home. It was probably the hardest time in my life, it was a lot harder than being, uh, in the hospital that whole time because my focus then was, okay, I'm gonna learn all of this. I treated it as a job and for me, one of the hardest things after transitioning home, I, for a long time, still treated taking care of my child like it was, um, a job and was very clinical in my, care for her. But yes, I did not have a clue what it was going to do to my, mental health.

And so, from my experience now, looking back on that, things that I wish I would've done was start seeing therapist, counselor, you know, the only people that were I could relate to were online. And sometimes, I felt, I didn't even feel like they could relate to me. So that's some things that I, I wish, you know, looking back on, I would've, not been too proud cuz honestly,  my pride held me back from a lot of self-care. cuz I can do this.  I'm strong enough. Yeah. You know? Yeah. And so there's things that I wish I would've, I would've went to my doctor and talked about medication earlier on to help me get through the tough times. The lack of sleep,, you know, there's just so much. It was like having a newborn times a hundred like yeah, you literally don't sleep and then that takes a toll. Um, such a toll. So, yes I definitely, my expectations, like I learned a lot about myself, um, in that first year and I'm still learning to this day. 

Deonna: Well, and you said about being, you said about being independent. Your husband works shift work. He's a nurse. My husband is a pilot. He does shift work so. Neither of our husbands have this, you know, cute office, nine to five job where they're gonna be home with us every night and be able to help us. So it was, I mean, even though you feel like lonely or isolated, like your friends don't understand you, you also are at home alone with this very, very, you know, fragile kid who's just, at the beginning, you know, constantly trying to die on you and still, you know, Yeah. For both of us,  every week. And so, yeah. I mean, you have to become independent. You almost have no other choice, you know? Yes, for sure.  So what have the years, so what have the years been like since, because that was years and years ago. Yes. Like what? You know, what are things kind of now for you?

Rhandyl: So basically we just now I, I kind of call it our “new normal.” Um, we don't, yeah, we, so with the nurses that come into our home, you know, we've learned, we learned, how to request nurses through our agency. We learned, kind of. our likes and dislikes. Learned that, you know, there's, if you have a personality conflict, it's not gonna work out. Even though they may take care of your child, you have to live with them. We want our nurses to feel like they're part of our family. We always treat them as so because they are, they are part of our family and mm-hmm. Um, Remi, uh, they have to have a connection with my daughter; She has to connect with them. They have to connect with her. If I don't see that, you know, within a time period, then I just know now that. And so that was a, that was a couple of years worth of just trying to navigate that whole world. But yeah, so that's kind of our, our new normal and..

I've figured out routine is key. It's the only thing that keeps me sane and it's kind of how my daughter ticks, like, routine is definitely key. Um, and for me, organization, we have so many supplies, so many schedules in our life. Like she's the busiest six year old. Which I mean, you, you understand this, I think everyone in this world understands. Like, you not only have a calendar, um, for your work or yourself, you, it's a full-time job keeping up with, your child's schedule. Yeah, your disabled child schedule and also your, your typical child schedule. But it's just a, it's a lot. So organization, I've learned, is so important.  

And also, uh, from a self-care aspect for myself. Since then, coming to the realization, and honestly this hasn't happened until this last year, uh after actually after having my second child.

I mentally, um, it took a huge toll on me. Because, I had been living this life of, just a mom of a disabled child and this is how it is. And, and then bringing my son into the picture, and he was a typical newborn. Came home two days later. But I also had, you know, Remi to take care of and, um, all the things, and then you're even more sleep deprived.

And so the aspect of of having my son, it, it really… Like I kind of mellowed out and plateaued from a mental health status for years. And then, yeah, we had our second child and it really, it brought out a lot of different emotions, a lot of guilt in a way.  There's just so much, um, that came with that. And so, I recently…

Deonna: ..well, and probably being back in the labor and delivery area of a hospital was not this like, happy, fun memory for you. So it probably brought back some like, really bad feelings for you. 

Rhandyl: Well, I, and I, like a lot of my anxiety started when I found out that I was pregnant again. It's not like it was a surprise. We did try, we prayed and prayed and prayed, um, did all the testing to make sure. You know, like genetic testing again. Yeah. Um, all the things. It was, it was a hard decision. It was years in the making and a lot of prayer and yeah, we, we finally, you know,  made the go and my fertile self, didn’t take long. And then I'm like, oh wait, like what did we just do? And so.. 

Deonna: The “what ifs” are too hard sometimes. 

Rhandyl: Exactly. And you can ask, my husband will tell you. Um, it was not a fun pregnancy. I was so anxious and nervous. And, um, of course I had a high risk doctor. I was very, very  closely looked at the whole pregnancy. Um, very in tune with my body after my first experience. But,  most of my anxiety started with the pregnancy and then of course, um, the labor and delivery. Actually, I think it was a God thing. I was so at peace, like, and I had a really amazing staff in the room with me that day. And so that whole experience was really awesome.

Mm-hmm. And then it's like, okay, you're home. And so then, you know. So I recently, this year started, for the first time, seeing, uh, counselor and ended up getting on some medicine to help me kind of stabilize. Yeah. And it's really, it's been an important aspect, like I am able to balance life better now. So, yeah. Um, that's good. Yeah.  

Deonna: So, what has been the hardest thing about being a disabled parent? Like in the beginning and then maybe now we'll start with the beginning. 

Rhandyl: Um. So in the beginning, I remember this is an example and I think about this so often, cuz especially with new moms that have NICU babies, that especially if it's like their first child.

And we'll touch on there, there's a poem, um, called Holland. Yeah. And I can't quote the author right now, but, um, it's, it's really perfect and, uh, how, how I felt at the time.  But you know, I planned this whole, um, perfect pregnancy and visualize my, my newborn and my child  growing up and yeah. You know, how that was gonna be and then it all, in one hour, changed and, um, yeah.

So I remember go just going into the grocery store to buy some groceries for myself in Houston when I was there one day. And just every time I saw a mom with a newborn in her basket or, just, just literally someone going to buy milk. And I was like, Yeah, you are just there, living your life and you have no idea. Like I was very bitter in the beginning, like, yeah, you have no idea what I'm going through. No one understands what I'm going through right now. And so, there was a lot, I couldn't relate to anyone. I just felt like no one understood where I was and what I was going through. So, relationships were really hard and continued to be really hard, because it's just you, you think of your life as like, or at least I did for a long time… I thought of my life as, life before Remi and life after Remi. Yeah. And it changed in a heartbeat. And then you find it harder to make friends in, in this, this world because you also don't feel like people can't relate to you or understand you. But then you also realize acquaintances and friends that you had previously, mm-hmm. Um, who, kind of, who really are your ride and die. So in the beginning, like that was my biggest thing is I felt alone. 

Um, and now the hardest thing, as she's older, and she goes to school daily, and we just try to give her the most normal life, um, that we can give her and that she's able to live. But coming to terms with the fact that she can't live a typical life, like, um, just that's a hard pill to swallow, if you will. Um, yeah, it, it just is. And the fact that she can never be left alone, like literally, for example, the other night. One of her night shift nurses, she went to the bathroom really quick and Remi turned over in bed and her ventilator circuit unhooked, and she was like in the middle of using the bathroom, and like her vent’s going off and she had to like run in there and connect her. And, I can't tell you how many times that's happened to me in the middle of the night. Oh yeah. But just hearing the nurse say that, and I'm like, Yeah. That's like, that's our reality. Yeah. Um, you just can't, the fact that she, she and honestly, and she's getting older, like knowing that in the future she's not gonna get to really have her personal space and No.

Um, so that's hard.  

And just realizing that the smallest incident can, that can happen, I mean, she can die in a  matter of minutes, just like, yeah, becoming unhooked in the middle of the night. So she also has central apnea, so she doesn't trigger her breaths when she's sleeping. Right? And so, if she doesn't wake up and she's off of her ventilator, you know, there's that and there's other things. Yeah. But, not exaggerating. When I say in a matter of minutes, she could either be permanently brain damaged or die. Like just knowing that, yeah. Every day.

Deonna: Probably seconds? Honestly, not even minutes. Like seconds. 

Rhandyl: Yeah. Um, and of course, I've touched on this a lot, this episode, but, just still to this day, living with someone outside of my family unit in the house 24/7. Like I was just telling one of my friends the other day that has, uh, typical kids, she was kind of complaining her and her husband had, um, been in an argument and she was like, you know, asking me about, that. And I was like, well, it's kind of crazy because, like, with, we have someone in our home 24/7,  we bite our tongue a lot and sometimes that's a good thing. So it lets us process, but then sometimes it can like, make us stew. And so then when we finally get to talk about it, it's either good or a bad thing. So, you know, that's just, I mean, that's another, that's hard. You just, you have to figure out, how to manage not only your life, but your marriage and your relationships differently, uh, on a day-to-day basis. So that's still, that's still hard, but…

Deonna: having an audience 24/7 is very hard. Yeah, for sure. And when you're out in public, everybody's looking at you too. I mean, you're just constantly being looked at, no matter where you are, even at home, no time to chill or relax, ever. Yeah, it's hard. Um, so obviously there's so many things that are hard about being the parent of a disabled kid, but, you know, I feel like for me personally, like a lot of good stuff has happened. What are good things that have came from Remi and just like all the trauma and things associated with that?

Rhandyl: Yes. So, I mean, I feel like we can go on and on about how it's different and, you know, the negatives. Yeah. But yes. Um, like my, my favorite things to talk about are, like, the blessings that I've received since Remi's birth and raising disabled…and number one is, my faith, um, has flourished in this, and I feel like the majority of the time, these traumatic instances can go one way or the other. It can help flourish your faith or you can lose your faith. Yeah. And for me, I thank God that my faith flourished in this experience. So yeah, the birth of Remi definitely brought me closer to Jesus. That's number one. 

Um, and just. My husband and I talked about this so much in the beginning, whenever all of this happened and we were in the hospital for so long, um, just realizing that there is still so much good in this world, you know? Yeah. We constantly hear about everything negative, you know, there's so much negative in this world right now. But we were awakened to, like, there are still, there’s still good in people because I mean, for years the support that we received, especially in the beginning, but even to this day, the support that we get, not only financially, but just, just a camaraderie.

And of course we're from a small town, so we had that, that whole support group. And um, yeah, and like you said, our, like I said earlier, like your ride and die community. Like you figure out who those people are through these experiences.  But that's also very overwhelming. Um, it's an overwhelming sense of, of graciousness, like, I can't even put it into words. Because it's like you have this feeling you could never thank these people enough for what they're, uh, giving to you and helping you with and supporting you.

Um, yeah. And another thing is, you know, I don't know the exact statistics, but, marriages do not last, the majority of the time, in situations that, that we're put in. Because it is so tough, um, but I think it's like over 80% of marriages fail when they're raising a disabled child or, or long-term hospitalizations. Yeah. Things like that. It's really bad. Yeah. And to be honest, um, we're thankful that our relationship prior to this, we were together for quite a long time. Dating and married. Yes. Um, and so, we were pretty strong in our relationship, in our marriage, um, I would say, but honestly, going through this has made us stronger in so many aspects. I could go into that… and that's probably gonna be on a future episode. Yes. Um, but yeah, I mean, I feel like just the battles that we've fought together through this process, has made us closer together.

Just, Just positive disabled communities that we have found, like we've talked about these Facebook groups and these, just these social media groups, where you can find people that are in your similar situation that you can relate to, that I had no idea existed. Those are so positive. I find so much community there. That's definitely a positive thing. 

And you know, kind of going back to the work I do, I didn't start out working with pediatric, complex kiddos, but now I do. And it's after when I finally did start going back to work a few years ago, after we got really trustworthy, good day shift nurses. I started going back to work a little bit and I went back and started working, um, with kiddos and just my passion for my work is, um, so, so much different now. And that's a positive, very positive aspect of, and you know, beforehand I was like, oh, pediatrics like, and I definitely would be like, no way. I'm not working with these really medically fragile children. Like, no, no. That's so scary. 

Yeah. So, and just a another aspect, just about life in general. Don't sweat the small stuff.  Now, the things that I would have  worried about or stressed about, um, planned for like, It is, I, I mean… if there's one thing I've learned through this experience is - take one day at a time because the future is definitely unexpected and, and not guaranteed. And not guaranteed. So, yeah. Um, if there's anything I've learned is, uh, live in the present and don't sweat the small stuff because it is, it's the present that's the most important. And so, yeah, there's so much good that came that's, that's come from raising disabled. And I can't wait to to talk about it more and, and talk about it with you and hear your story,  and everything that you guys have gone through the past few years.

Deonna: Yeah. So next time we're gonna switch and I'm gonna tell what happened with my daughter, Allie. It's very, very different, but a lot of the things that we go through are almost exactly the same. So it's kind of a crazy, it's crazy,  so that's what our next one will be. So we hope we will see you guys then.