Superstitions from Parents of Disabled Kids

In this episode, we share all of the superstitions from our listeners and ourselves surrounding the care of our disabled children.

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Transcript

Rhandyl: Hey y'all, welcome back to Raising Disabled. So we're gonna catch you guys up on what we've been up to the last few weeks. I have not had very much going on positively, so our whole, yeah, our whole house got the stomach bug. 

Deonna: Oh, that's the worst. 

Rhandyl: And it was the weirdest. It wasn't like your typical, it lasted a few days, and I felt like everyone had it a different time, so it seemed like an eternity. That we dealt with that. So that was fun. , tis the season for all the things. 

Deonna: How does Remi handle vomiting? 

Rhandyl: Luckily this time she didn't have the vomiting. Other people did. Oh, that's good. But she just had the other, yeah. Yeah. Which that's But she does not, no.

 But it's never fun when she has, , the vomiting because of the trach and lots of suctioning and it's just scary. Lots of trach care and it's a lot. 

Deonna: I was wondering what that would be like because Yeah. They don't think Allie could vomit even if she got sick because it takes some muscles to get that up there. So it's kind of gross, but yeah. TMI. 

Rhandyl: That makes sense. Yeah. Yeah. So that was fun. Remi did get her new AFOs. The last few weeks and they're custom AFOs. This is her first pair of custom AFOs. Now I really always have custom AFOs, right? For a while. Since she's got, yeah, since day 1 yeah. So we, she had her very first casting experience and did great. And then got her AFOs and yeah,, she's just had, they're not really, wouldn't call them over the counter. pink ones, or? , they're actually purple. And they're, , they look like the atmosphere. 

Deonna: Oh, the galaxy print. The galaxy one. Yeah, yeah. 

Rhandyl: She's just went through a huge growth spurt. And her PT really wanted to get her some custom ones to give her a little more stability. And it's been amazing. She's, she is walking. So they have this little taped lap in the Jim at her school. And for example, before these new AFOs, she was. She's walking with her gait trainer with her PE coach, like maybe maximum eight laps. And I'm not sure how big this lap is, but and today she walked 15 laps. So that was, and she's so 

Deonna: crazy because I've never seen her walk just in person. So she's 

Rhandyl: going to, I think this year challenger, we're going to have to bust out her gait trainer and make her. Walk the basis. Oh my gosh. But yeah, she, uh,, she, also this week in PT at the house, she stood independently for 12 seconds and her new AFO. So they're definitely helping her feel more stable. So it's exciting. She got a little treadmill. I think we talked about that for Christmas and she started using that. During 

Deonna: her, people that don't know what AFOs are, tell them what that stands for, their and what they a are for.

Rhandyl: So ankle, foot orthotics. And then you hear, you'll hear DFOs AFOs, H kfo, like there's knee, ankle, foot orthotics depending on the disability. Yeah. Depends on what kind of orthotics that you need, but typically they're a. which are ankle foot orthotics that most of the time that you'll see on kids.

And kids have them for all different reasons. It looks like a plastic brace yeah. And yeah, there's all sorts of reasons that, for Remi, she wears them for stability. And because she's so low tone and some kids have to wear them because of high tone contractures prevention of a certain, ankle problems and things like that. And then, You can explain why Allie has to wear them. 

Deonna: Yeah, she wears hers because her foot, you don't realize that you're actually holding your foot up into that kind of 90 degree angle. And so Allie's feet, when she's laying down, they just drop straight down. And so eventually what would happen with a kid who's paralyzed or something is like their foot wouldn't bend anymore and they wouldn't be able to fit into a shoe. Their foot would almost be like in a tippy toe position, or it would go off to the side. It would get to where you'd have a hard time dressing her in shoes and stuff. So yeah, hers is just to hold that correct shape and, 

Rhandyl: definitely beneficial for her in her stander too.

Deonna: Oh yeah. She wouldn't be AFOs cause it'd be just too much pressure on her ankles and stuff. So yeah, they're there's a lot of reasons kids wear them. Now that I know what they are, I see them all the time on kids and I'm like, Hey, I know what that is. Yeah.

Rhandyl: But, yeah. Yeah. That was a fun thing. And then this week I had gotten a gift card to a local spa for my birthday. Nice. That was last month. And I had, Scheduled it and then got the stomach bug and had to reschedule it, but I was able to enjoy that this Past week and it was a very relaxing day I worked the morning and then took the afternoon off and went to the spa and that's the best got a facial and just Hung out in the lounge room area and drank mimosas Complimentary and just enjoyed my life until 

Deonna: like I'm moving in here now, so you can't make me leave Basically, but I was going to the spa.

Rhandyl: Yeah, it was a very nice afternoon but you guys have been very busy. 

Deonna: We've had a lot going on. First of all, Allie did the spelling bee the other day and it was hilarious. She is a good speller, so I was excited, she qualified for her school and this is the script spelling bee. Like the. Fancy, big one. Wow. Yeah. Yeah I guess it has to start somewhere. So it starts in the elementaries and then it goes on from there. But there were so many roles. It was like really serious. I thought it was going to just be this cute, funny thing, but it was very serious, , thankfully, she got through the first practice round and spelled that word right.

Cause I was like, Oh, she would have been upset. But on the first real word, they gave her the word, we like, we, I'm going down the slide and she spelled it wrong. I didn't either. It's apparently it's W H E for people who need to know in the future. No, I would have not done H. But she spelled it W E E, yeah. Yeah. And no, I didn't even know that was a word. That's not fair. I know. 

 But it was really funny because, she just got out like on the first round, but she would have gotten out in the first few rounds anyways. She was going up against fifth graders yeah, but that's awesome. But I was proud of her for just putting herself out there and trying and doing it. So that was just a funny day. And then her birthday was a couple days ago. And so she had a Disney Descendants Zombies themed birthday. So it was just like Disney Channel stuff all over the house. And we don't have parties, but I made her a cake. And so she loved that. And Yeah, we just hung out at the house and did birthday stuff and she got to eat her cake and all that. 

Rhandyl: That's fun. The cake was so cute. 

Deonna: Yeah, she wanted a pink and green one and it was funny because that's the color of the movie Zombies, like the cheerleaders from the movie. Yeah. And whenever we made it, Allie's like, it actually looks like a Galinda and Elphaba cake from Wicked. And I was like well, you like that too, so whatever. There you go. Bye. Two for one. Yeah, I know, right? 

But the big thing that happened for us in the last couple of weeks is we went on, and I didn't even talk about this, which is funny because we're talking about superstitions and I didn't want anybody to know we were planning this because then I thought maybe it wouldn't happen or something, but.

, me and Dane got to go on a trip by ourselves for the first time since she got hurt. And so we used to do that, that was like something we did. . So basically my mom and dad came and stayed the whole time we were gone. And my mom has actually learned. A huge chunk of her care, like quite a bit, so I felt okay, and our nurses were here 24 7 around the clock, so shout out to Macy and Tanya and Lauren and Melissa and I mean they, stepped up and helped us get to go. It's a huge deal. 

It was fun. We went to Austin. We went and saw Hans Zimmer. He's the composer. He did like Pirates of the Caribbean and Gladiator and The Lion King. And I had never seen Inception or Interstellar, but he did all the music for those movies. And a whole bunch of other ones. Like he has done. So much, but he basically writes all the music for these movies. Yeah. He does these live shows where he pulls all the musicians who do the recordings and they perform it. And it's a big show. . It was really fun hearing all these songs that you've heard in the movies and he played them and the Lion King thing was definitely like the guy who sings the music from the Lion King.

He was there the original guy. Oh, that's so cool. So that was super cool. And I loved Pirates of the Caribbean. When I was in high school. Oh yeah, so did I. That was like our thing. And hearing that song played by the same person that played it, it was just cool, but and hearing the story behind everything, but.

We went and walked around the Capitol at night . The Capitol in Texas is crazy. Like it's bigger than the U. S. Capitol. Like the dome is bigger, which if you live in Texas, you get it. Like Texas does everything bigger than anywhere else. But we didn't know you could walk around it at night. So that was cool. Like we got to go walk around at night when there wasn't very many people there. And then we just went to all these, we researched like all these restaurants to go to. Had always wanted to eat at a Michelin star restaurant for some reason. That's just like something I wanted to do.

And so we got to do that and he in Austin and we ate we ate the best Italian food I've ever had in my life in Austin at this place called North Italia. I'm obsessed. I'll never go back to Austin and not eat there. Like it's that good. But, um. Um, yeah, we got to eat and do a little shopping, but I guess caregivers will understand this, but we also like laid around in our hotel a lot and watch movies and read books and chilled. And like we didn't 

Rhandyl: have no agenda. That's awesome.

Deonna: It was so weird that feeling, oh my god, yeah, like when we drove off and you didn't have her with you, or even Cole, I mean it was just like crazy, and we got there and grabbed, it's been a long time, oh it had been so long, and we grabbed our bags and went inside and we were just thinking Oh my gosh, we don't have a two hour process of unloading all of her crap and putting it away and cleaning the room up and, so it, it was seriously the weirdest feeling like going to sleep and not setting an alarm and just. It was not like seriously crazy, but we all needed that so much. 

Rhandyl: I'm so glad that everything worked out. 

Deonna: We did, yeah. We went to a spa too, and I love spas. We got massages and it was seriously, she's like, you have a lot of knots in your shoulders. I'm like, yeah, . I probably do yeah. But no, it was nice and my mom, when we got back, my mom and all my nurses were like, okay, now that we know we can do this, y'all can do it again and it'll be fine. So yeah, more often. And Allie did really good. I was like, I will bribe you. I will buy you. Whatever please don't make everybody's life miserable by crying and, being weird. Yeah, it was really fun. I'm so 

Rhandyl: glad everyone behaved and y'all had a, I know, relaxing time. 

Deonna: And now we're gonna talk about superstitions in a second, but I can talk about it now that it's over. And Nothing bad happened. . Like we went over all the emergencies and had the 9 1 1 scripts is ready to go. And Oh my gosh. But yeah, nothing happened. So we're good to go. But hallelujah. I know, but so that's what we've been up to these last couple of weeks. 

And this next episode, we just had this random idea and thought this would be fun to explore all of our weird superstitions that we all have. And apparently, and you'll find out we have a lot of the same ones but this was a fun one and we hope you guys enjoy it. Not only do I transfer my own child in and out of her stander very frequently, I transfer my pediatric physical therapy patient in and out of their standers every day. And Zing standers are thoughtfully designed. Transfers in general are not easy, but Zing took care designing a standard to simplify the process as much as possible.

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So they designed a stander that could position a child from supine to prone. It's a seamless transition from full supine to 20 degrees prone and provides a therapeutic opportunity found in no other stander. You can learn more at Zingstanders. com  

Deonna: Hey y'all, welcome back to Raising Disabled. So today we're going to do something that I think is fun. We're going to just talk about all of the superstitions that we have as medical parents. I don't know what it is about being a parent of a disabled child or a medically fragile child or even a kid who has like cancer or something like that, but we just become so superstitious.

I don't even feel like I was superstitious before this. I thought that was all silly. And now we just have so many weird things. Were you superstitious before Remi? 

Rhandyl: Not really. No, my husband has always been superstitious, but Oh, really? Not really. But now, yeah, I'm definitely have these weird, superstitions and things, especially surrounding her medical care and things like that, 

so. 

Deonna: Well, when you're from a town called Shamrock, I guess it's okay to be a little superstitious. But so what we did is like what we normally do. We asked our listeners what their superstitions are, and then we're going to talk a little bit about what some of ours are and even some of the weird origins of some of these superstitions that we all seem to share.

So, , We're just going to jump right into it. Our first listener was @megan.davis.18, and these are from Instagram, and she says, No one is allowed to talk about how long it's been since my son's last break. I'm guessing he has a lot of bone breaks from his disease. I'm convinced it will jinx us.

, break number 13. Oh. And the last three compression fractures happened when someone talked about it. I also, yeah, I also need to pack a bag to keep in my car, but I'm too afraid that we will need to use it right after it's packed. The 13 is not funny, but you're like, okay, that's like a thing, superstition, but yes.

Yeah I do this sometimes, like I'm afraid for me to talk about certain things. I'm afraid for other people to talk about certain things. Oh, yeah. And I'm with her on the hospital bag thing. A lot of these are gonna have to do with hospital bags, which is really weird that we all are superstitious about our hospital bags for some reason.

Rhandyl: Yeah, and 

I feel like it's funny because, , everybody Has their superstitions in different ways regarding , do they do that? So yeah. So our next listener @electric.love.Retreats said never say how long #seizures. And luckily neither one of our daughters have chronic seizures, but. I treat a lot of kids with these diagnoses, and I know it's definitely taboo to talk about how long it's been, especially if it's been a while, and I think that goes for a lot of things that happen with our kids. But, yeah, the seizure thing especially if it's been, a while, they're definitely not, they don't even want to talk about. about that. So 

Deonna: , even the other day this girl, Samantha, that we both know, she was talking about how it had been years since her daughter's last seizure. And when she said that I felt superstitious on her behalf and was like, Oh my gosh, Samantha would God, why are you saying that? But.

Yeah, it's so true. Our next one's from @onceuponagene.Podcast who we've talked to in the past, but she said, if you go on vacation, know where the children's hospital is because your kid will get sick. Who am I kidding? Vacation. And it is like me and Dane, when we go on trips with Allie. We went on that huge road trip last year to Vegas and we were like, okay, there's obviously a good hotel in Vegas or, not the hotel those two, but there's a good hospital in Vegas.

And then we were like, okay, where are hospitals that are capable on the way? And we were like, Albuquerque Oh, that's it basically, and so it was scary. I just remember thinking, and we were having oxygen issues in Flagstaff. because of the elevation, and I just thought, oh, gah, here we go, like it just scares you. But that drives in the middle of nowhere. Yeah, but you have to know where those children's hospitals are. 

Rhandyl: Yeah, it cracked me up because, yeah, we always have an emergency plan when we're planning to travel most of the time. But where we go, there's not usually we're going to the mountains or. Small town America and so yeah, there's never like an easy means to get to a hospital in a timely manner for sure but it just was funny because she you know, Vacations are definitely few and far between for most of us disabled kids Yeah, there's always that thought and you got to have a plan whether it's how you're gonna manage them until they get there or Where you know, it's there's a lot to think about for sure 

Deonna: And it's something that is so unique to us. Never in a million years before Allie's injury would I have planned a trip for us and thought about where a hospital was. I just, that was not even in the realm, but and I feel like if you even think that they could go in the hospital on a trip, it could happen. That's how superstitious we can be. I know. It's stupid, but that's the way it is.

Rhandyl: I know. Our next follower, @nowisee_journey said if I pack the car in anticipation of being admitted for respiratory problems, then he won't end up needing to be admitted. It works! She said.

This is like the first one that you read, but I've never done this because I feel like If I did that, then it would happen. That's my superstition behind it. Me too. I usually don't prepare for hospitalizations because I feel if I do Then we're going 

Deonna: I'm like, I'm superstitious like you like I'm like, okay, if we're not Totally prepared for that it won't happen. And then my husband's superstitious in the opposite direction , I think that sometimes when I think it all this superstition comes down to like, we feel like we want to control a situation and this is the only way we can do it is by having these kind of things, and so it makes, and it makes her know, okay, I'm prepared and I feel okay about this and I can control this, and so it's like a peace of mind kind of thing, I think with a lot of us.

Okay. The next one's from @zylstra_rn and she says, when anyone says, how are things going? I always knock on wood and say, we're cruising. Don't want to jinx it. Also hospital bag is always. Packed with the current clothes because then we won't use it.

So it's the same, the bag thing again. So we're all very superstitious about our bags. But I think it's funny how she said we're cruising. Like she won't exactly say we're doing good or say something positive because then that buys into our superstition of being afraid, admitting something good's happening, we'll make it go. Bad, that's how I feel too, but same we looked up what, cause I knock on wood a lot. Dane knocks on wood. Like in our little crew, everybody. And I'll talk about that in a second, but I mean, we all knock on wood and I was like, why do we do this? So I looked it up so we could tell y'all.

I was trying to figure out why we knock on wood. And this one explanation is, there's actually a lot of weird explanations for this, but one of them is just this like ancient belief that people believed that spirits and gods lived in trees and that knocking on wood would be this way to call on these spirits to protect you or to Have gratitude for good luck, and it said people may have believed that knocking on trees would protect them for having bad luck, and then another belief is that some people believe that evil spirits lived in the wood and knocking on it would shake them out, which I don't get that. Like I would not want to release evil spirits but , I do understand from that one, like people thinking it would bring out good spirits to you or something. 

Rhandyl: It's very interesting. I had never really thought about why we do that. It's just something that we've always done. And but there's also A children's game that we read and I think it originated in the 19th century. It's called Tiggy Touchwood. And so when you're playing this game, players were safe from being tagged if they were touching wood. So it sounds like the game tag. Yeah. And base had to be wood. So 

Deonna: and you were safe and you were say could see that cuz I have heard I've heard people say knock on wood and touch wood. Have you heard people say that? Be like, oh my gosh touch wood. I can't believe And I'm like what like I'm that was weird to me. But yeah, maybe that's what that's from. 

Rhandyl: I think my favorite one That we looked up, it said Christians may have linked the practice to wood from the cross from Jesus's crucifixion. Which, I'm gonna go with that one. Yeah. That's why I'm knocking on wood. 

Deonna: I know, I'm like, okay, that sounds a lot better than, and that aligns more with what we believe. Sure. Evil spirits. Evil spirits. Summoned from wood or something. That's a little, the more you know on that one. Yeah, there you go. A little bit. Yeah, but we do knock on wood, I'll talk about it in a second, but it's, we're religiously knocking on wood about things all the time, it's ridiculous.

Rhandyl: So our next follower, @mrs.laurentesch, said, if we keep the hospital go bags by the door, before going to bed, when our girlie is sick. We won't need them, but the second we are completely unprepared for a hospital visit, it happens. 

I don't know, maybe I should try this, because I feel like we are always completely unprepared for hospital visits. Because it's usually our hospital visits are, like now, at least. It's emergency situations. So it's Oh, but then I'm like, Hey, if I do that, then she's going to have an emergency situation. 

Deonna: I know we don't ever casually go to the hospital. I know if we're going, the EMS are in her room. bagging her. She's getting carted out in the ambulance and I am grabbing my phone charger and we're, and you don't even care if you have your clothes or anything. You just grab your charger so you can like communicate. 

Rhandyl: But that's how our hospitalizations have been the last few years too. It's like fun. Yeah. 

Deonna: Our next one is @hkwoodley, and she said she was hospitalized for a mysterious respiratory virus many years ago. Pre covid. I still check her breathing every single night before I go to sleep. 5 plus years later. I have this weird superstition that keeps her safe. And like our daughters are on pull socks, so we don't do this, but I was thinking about this and I'm like, Oh my gosh, if you had a moment where your disabled kid de satted or did something like that, where they had oxygen problems, you, but then they're not on a pull socks, cause that's not really. Even in the disability community, that's not that normal, and I'm like, oh man, I totally would do this. I would be checking, I think. 

Rhandyl: Yeah, I don't know about you, but this is something that I check daily, just literally out of habit. Multiple times a day is Remi's trach ties because her decannulations, 

Deonna: I don't have to worry about that as much as you do.

Rhandyl: Yeah, I am always just like randomly going up to her and sticking my finger and making sure that it's tight enough or whatever. It's tight, yeah. Yeah, because, yeah, that's usually an emergency situation. 

Deonna: And I think, I don't know about y'all, this is a whole different episode, I, topic, but, I feel like some of our superstitions, or rituals, or behaviors, can start to border into like, obsessive, compulsive things that I do. It's I'm superstitious about some of this stuff, but then I also get where, I have to have everything a certain way. And I, but I would do this if I was hurt, like if you almost lost a kid that way, I would check and I do things like that now. It is, 

Rhandyl: it's one of those. Yeah. It's like you live and learn and then it definitely makes me feel more comfortable. 

And, I feel like if you don't, if you don't do it, then, I don't know, I'll feel guilty if, it's just, it's a whole, there's so many things that go around it. But I totally see the OCD situation. That's probably very true. Yeah. I think all of us have that, in a way. PTSD and all the things. Yeah. 

Deonna: Oh, yeah. There's, I was even thinking during this episode, there's so many things that are, not necessarily a superstition, but Stuff linked to trauma where I won't cook certain things or I won't and they're all related to the day She got hurt or like the first day she ever coded we were watching that movie the holiday Which is still one of my favorite movies But I didn't watch that for like a year because I was afraid that if I watched that movie Something could happen. It was just like you link these things with trauma and it's that and then they can become like a superstition like this, but it probably does keep her daughter safe for her to check her breathing. Honestly, it's like not a bad idea at all. 

Rhandyl: Good idea. So our next listener, @katiemarie01. said, we can't talk about plans ever. A hospital visit always puts fun plans on hold. Never buy tickets for anything that can't be refunded. Literally anytime we try to plan a date or a day out with our older kids, she's hospitalized.

And, oh man I can relate to this. I don't like to talk about plans. Especially if it's more than a couple of weeks in advance. I don't like it. I mean, They're there, but I don't like to talk about them or I'm so excited about it. Because I just always, there's just this in the back of my mind it's. May not happen and that's okay. I just have to keep that in mind that, you can make plans, but I don't like to talk about them or act excited. It's just because it's, you never know. 

Deonna: I mean, our lives as parents of disabled kids is so full of disappointment. And I've, said this a hundred times, I think disappointment is one of the hardest human emotions you can go through, even worse than like sadness and things like that, and then sadness is tied up in it a lot, but you can tell this girl has been through a lot of disappointment. Like she has thought something's going to happen. It didn't happen. We're supposed to have a plan for this weekend. I'm scared to talk about it because somebody may call in sick and us not get to go or this or that or, 

Rhandyl: There's so many moving factors. Oh my gosh. Especially when you have nursing involved as well. 

Deonna: Yeah. There's a thousand things that could make us not get to do this, a non refundable thing that we want to do this weekend. But I'm like her, I always buy like that ticket insurance. If we're buying tickets to go, me and Allie and our family goes and sees lots of shows and like concerts and things like that. I always buy the insurance because I'm just like, you never know. . She'll get sick that week but yeah, I, Oh man, I've had so much disappointment like her. It just, it sucks. 

Our next one is from Ruby Moseley, who we have talked to in the past and she said on Facebook, I avoid scheduling things on the 13th of any month, which great moat Ruby. Now I'm going to start doing that too. It said she was born in 2013 and due on the 13th. but was born a week late. Her first surgery was on the 13th of the following month. Oh man. And she came home for the first time after 13 weeks in the NICU, but had to go back 13 days later. That's just weird. That's terrible. Oh my gosh. She said, odd numbers, years, ages also seem to not be our friends. She's had a major life changing surgery every odd number year since she was three. She's 11 now. And we find out next month if she'll have spinal surgery this summer. I 100 percent believe this is not in any way logical, but it is what it is.

The 13 thing is weird. Oh my gosh. 

Rhandyl: I would be, very, I've never been like a 13, It's funny, no, no, I've never really, it's, , I have, don't think it's a big deal, I try to just think, oh, that's just silly and for example, I swear, every time I go to get a Walmart pickup order, I park in the number 13 parking spot, because no one else is parked there, and it's pretty close to the door, they're all freaked out, yeah, and I'm like, this one's always open, and I always park there but, it's Yeah, no if I was in Ruby's situation, I would definitely avoid the number 13 the plague.

Deonna: Yeah oh, and I hate that she might have to have spinal surgery. Me too. We had a little scare this year that Allie was going to have it, and that is a thing oh, man. 

Rhandyl: It's a big deal. 

Deonna: Yeah, even like the 2020, I that's when Allie got hurt, and that was a horrible year for so many people. And it just, it's just so freaky that whole year just was a bad omen in itself it was horrible. 

Rhandyl: Yeah, I don't even like to say. Or I think about that year. 

Deonna: I don't either.

Rhandyl: I can only imagine you. Your situation. 

Deonna: It was, yeah, it was bad before she got hurt, but then, oh man, like when I think about 2020, just that number and I don't know, it's, and it's weird too because I remember in 2022, I made, cause I used to do calligraphy and hand lettering and a lot of graphic design, which now I do that for this and things like that, but I made this post on my Instagram.

, I just thought of this and it said no funny business 2022 cause we had such a hard 2020 and 2021. I was like, okay, 2022 we're going to start healing, blah, blah, blah. My brother dies 50 days later and I'm just like, oh my gosh. And so now I never ever post new year's. Anything positive about that year because I'm just like, who knows what dumpster fire awaits Like, you just never know, but, yeah.

So tell us about some of your superstitions or things that have happened to you. 

Rhandyl: Yeah. I was trying to go through because I know there's a lot and I'm sure I'll didn't remember all of them because I feel like they're just always something, but I actually collaborated with Remi's nurses too, because we all have our things that we do, but my biggest thing is I don't like to say things that are positive happening medically out loud until it's been like a while just to not jinx it.

Yeah. 

Deonna: Do you think them though? 

Rhandyl: Oh yeah, I think them. 

Deonna: You think them, okay. 

Rhandyl: But the thing is funny if someone says Oh, I haven't seen her do that in a while, especially if it's like a negative thing that she does, and I'm like Why did you just say that out loud? I'm like, stop. I know. 

Yeah, and I don't like to say the word clampdown in fear that it will happen. So like when Remi has her bad clampdowns, it's like when her airway closes and it's a major thing. She goes into hypoxia and all sorts of things. But , we call them bad things. It's so funny. You listen to the nurses give report each, shift change. And most of the time, thankfully, it's no bad things, and we're talking about clampdowns, decannulations.

Deonna: That's such a new medical term to me. Yeah. So professional. 

Rhandyl: I don't know if they, they probably don't put that in their narrative in their notes, but I don't know. I hope they do. I hope they do. But yeah. We don't talk about the bad things out loud. But, there was some comments about supply hoarding on our private parent group, and I, definitely after 2020, there we go again, talking about 2020 like all of our stuff so Remi's ventilator circuits, we didn't get them for a whole year.

Yeah. We were having to like, Try to figure out how to sterilize it and we were making them last as long as we could. I was scrambling through all the, there's Facebook groups of medical exchange places and like we've called them unicorn circuits for years now because she is super sensitive or she, especially then she was really sensitive to specific circuits.

Yeah I hoard specific things and now like they for a while we weren't getting her custom trachs and so I have a Ziploc bag of ones that have been used too many times so we've sterilized them you know the max amount of times but I still sterilize them and then I put them in this bag and it's like It has on there, for backup only. And we have so many trachs. Like, We are not low on takes. But yeah, I'm like, weird. That's her lifeline. That's her airway. I keep them all. I mean, Obviously, unless they're broken. 

Deonna: See, we came into this world during 2020, so I thought that was all normal to be like, trying to scramble for things and not have things. And then as it chilled out, I was like, oh, this is actually the normal experience. I didn't know. Yeah, you can get a lot of things. Yeah, we were like not getting anything and I thought, this is weird, but yeah. 

Rhandyl: Oh, I can imagine. 

Deonna: Everybody was on ventilators having COVID, I know. 

Rhandyl: Everybody, yeah. So it was a wild time. And so I. I, I catch myself like, oh, just in case, hoarding date. Yeah. So you were talking about oxygen tanks. We have an oxygen tank refiller at home. And so we don't have to swap out tanks. We can fill them at home. And I'm constantly checking, even though she never is on oxygen anymore, like ever, but I'm still constantly, we always have a tank with her, because in case she has an emergency, and I'm always checking the regulators , if they get, even three quarters low. I'm like, we need to fill it even though we have backup ones. And I always have backup regulators, which I think you should always, but just earrings, all the things they have to be with her wherever she goes. 

 I do have, we call it a go bag, but it's basically a duffel bag that rolls, they take it to school, we take it everywhere. It has backup. Everything back up that she would need in it and she never have to use it. But in the one chance that we don't have that duffel bag, then we will, you're in trouble. Yeah. 

But so remi stopped wearing her glasses like a year ago. She just one day restarted pulling them off and refused to wear them. She was wearing them great for a year or two and so we just randomly try to put them on her and when she does wear them and keep them on and not mess with them, We don't like to talk about it. We're just like, Okay, she's got them on, let's just not talk about it. 

Deonna: You and your husband have a signal, you just look at each other like, Yeah, it's, You can say it though.

Rhandyl: She does this crazy thing where she pokes her eye And gets her eye infected a lot. And then she's actually completely scratched it before Oh yeah. Where we had to do like really strong drops and all this stuff, but, Ugh. We avoid saying she hasn't poked her eye in a while, things like that. If we, someone says that to me, if one of the nurses say that her eyes are looking good, or, and I'm like, You know better. Shut up. And Remi, she knows what we're saying, and then literally, she'll just poke her eye. Right at her. 

Deonna: It's like a cue. Yeah, it's like, oh, that's what they want me to do right now. 

Rhandyl: No, kills me. But one of the night shift nurses, she said I don't tell her she's gonna have an amazing night and sleep all night anymore she said that she just likes to Tell her good night and sweet dreams because the nights that she'll tell her to sleep all night She wakes up at 2 a. m. Ready to party like a rock star and that's so true 

Deonna: That's funny that you say that because the other day when we were talking on the podcast about how Ali doesn't wake up in the night anymore, , we were doing this like at night and I walked out there and she was asleep and everything.

And the next morning they were like, she woke up like 20 minutes after you walk through and never went back to sleep. And I was like, I just said she wasn't doing that anymore. Oh my gosh. Like I was like, sorry, that was my bad. And I truly believed that's why these are so funny. I was like, that was. That was my fault. I told everyone that she doesn't do this anymore. So she's just watch me do this. 

Rhandyl: I know. I, Remi, she's still like once a week, once every two weeks, she'll have a night where she's up for hours and it's the worst. We definitely don't like to talk about that out loud. Like we don't, there's so many things we don't like to talk about out loud. 

, one of her day shift nurses that's been with her for years said , before I leave my shift she sings the song, I love you, a bushel and a peck. Oh yeah. And she, she said she's only forgotten a couple of times and it gave her extreme anxiety when she got home. I know, I'm like, you could have just called and sang it to her on the phone. I know. Yeah, but it's just so sweet. That is sweet.

Yeah. A deeper one for me. Yeah. I don't know if it's like a superstition, so for me, I don't imagine Remi's future past six months to a year. Yeah. Out of fear. Like just out of fear of losing like hopes and dreams. It's just something that I think I've done to protect myself since Yeah. I think so. He was really young. Like I really don't Imagine, I try to never really think about that. Yeah, like teenage Remi or adult Remi. Really, cognitively trying to, it's just, I don't. Yeah. Because you just never know. She's came close to death so many times, just like Allie. I am, Not going to think that far in advance because yeah, then I just feel like things more things are gonna be shattered So, I don't know if that's the right thing to do, but that's What my body and brain? 

Deonna: When people I'm the same way people are always like where will Allie go to college? And I'm just like I'm not And I have thought about things like that before and she you know wants to go to L of course where I went and things like that.

But I'm just like, I can't envision her being alive past this year because I just don't know. And if it isn't that way, I'm going to be so heartbroken. So it's just, yeah, I'm the same way too. I don't like to envision her older right now, even though it could happen. Oh yeah. But there's going to be good and bad when they get older. 

Rhandyl: It's probably harder for you to avoid those conversations and things because Allie does talk about her future and yeah, she does and that makes it, you have to be like, Oh yeah, or 

Deonna: And it's heartbreaking how realistic she is. She's I'm not going to be able to do a lot and she'll tell you and you're like, okay, yeah, you're right. I think she'll do what she wants, but I'm with you. I don't like to think about the future. It's just too much one way, it's either too hard to think about being older and raising them still, or it's too hard to think about being here without them. Either ones. 

Yeah, , I got a few stories, but it's weird because speaking of your town Shamrock, whenever like I remember, when you, when your kid has like an injury or something like this, which it's probably the same when they're born with a disability, but you have a traumatic memory of everything surrounding that time and, before and after and everything.

And I remember we went to my parents cabin on the way home, and she got hurt like a few days later. And we were in the mountains at their cabin, and Allie came up to me, and she was four at the time, and she's like, Oh my gosh, Mom! I found a four-leaf clover and like Mm, I, I had never seen a four-leaf clover before. I had seen the three, ones. Yeah. But I was like, oh my gosh, that means you're gonna have really good luck. And, we were talking about it. Sure. And I just remember it. And now I'm like, freaking four-leaf clover. That is not lucky, and so now when I see four leaf clovers, I'm just like, ugh. Like this. It just is a weird, not like superstition, but that was supposed to be lucky. And then this thing happened, but so I, it was weird. Like it was really weird, but and I do remember after she got hospitalized, I, like I said, I don't think I was that superstitious before, but one time we were in Houston and we were on the TICU floor.

Were y'all on the TICU? 

Rhandyl: Or, it wasn't called the TICU, but it was the same thing. We were It's the same thing. Yeah. It was a, you guys got there right after the new tower was built. And we left like a year before. 

Deonna: Oh yeah, y'all were in like Wallace or something. Yeah, Wallace. The TICU is where all the like, oh crap, you're, you're In and out, not making it kind of floors where the TICU was like where the more stable trach kids were who just weren't rehabbing to get out and stuff.

So it was chill a lot, like at night, and one night I was out there talking to three or four nurses and I was like, it's just so chill tonight. Those nurses went ballistic on me and they weren't even like kidding. Like they straight up were like, Oh my gosh, I can't believe you. It's gonna be bad now. And 

Rhandyl: oh my gosh, I made the same mistake with that. Yeah. I said the Q word. I said wow, it's quiet tonight. And they were like, what did you do? They were so mad at me. And they were like, never say quiet. And Cole was actually with me whenever I said it. And he was like. Dude, you don't ever say the word quiet in the hospital room. But he's in medical, yeah, he knew. But everybody was so mad at me. 

Deonna: I definitely, yeah, it was really awkward. But I definitely think that we're so superstitious because of how many medical people we hang out with all the time. Because that is the most superstitious group of people It is. you will ever know. They I mean, it's hilarious, but Allie coded at El Paso children's like lots of times, but in Houston, she only coded once and it was at night and Allie's nurse, Joy told me she was sitting there I don't remember why I remember this, but she said she was sitting there that night and it was quiet.

And she said, she looked at Allie's monitor cause they have all the monitors outside in the halls. And she said to her friend, Oh, look at my little Allie sleeping so good. And she said her number, like her heart went from 60 to zero. It was like. Within a few seconds of her saying that or thinking it or whatever. Oh wow. And she runs in there obviously and is doing CPR and like the whole thing happened. And afterwards she was like, I'm so sorry. I thought that she was sleeping so good and now she coded and I was like, like she, I think she truly felt like it was her fault that she had said she was sleeping good.

And I'm like it's cause I. Pulled the circuit off trying to dump the water out and I caused it, like I did but She felt so bad and I just remember being like man 

These girls are really superstitious about the same stuff we are now, but we always take, Allie's had the same unicorn that I gave her when she was four and her name is Zoe, which is funny cause now our dog is named Zoe. But we take Zoe to every hospitalization. I don't even think she, she's not even really that into Zoe anymore, but Zoe has to go. And there's this rainbow blanket that my mom's friend, Lori made her. Like the week she got hurt and that, like that's her good luck blanket. It's gotta go everywhere we go. We have to have it. It's like a thing. 

Rhandyl: We did that with a scout and scout finally bit the dust, but every hospitalization. For years was we had to have her scout with her. She had it like from the, like she was when she was tiny in the NICU. . 

Deonna:  We also don't like to tell people how long it's been since she's been in the hospital and it's been years and I just don't like to talk about it or say it. Like people be like, she hasn't been in the hospital in forever. It's been years. And I'm just like, great. Thank you. She's going in this weekend while I'm out of town. Thank you a lot. 

But and then we knock on wood, which is, great. And all of our nurses knock on wood. They all freak out if you say anything like weird, but. We have a bag like what you were saying that has Serious emergency stuff in it. Huh, but me and Dane will not pack a hospital bag Like we know if we pack one we're going yeah, and so we just are like I'm not doing it, 

And it's funny because there's this hospital bag that I took every time it was like this black bag and I won't use it for any other reason but the hospital because I feel like it has like bad juju or something like I just don't like to take it and it's a cute bag I really love it but I just I don't use it for anything other than that but yeah, all of our nurses, therapists, even our DME RTs are very superstitious. They won't talk about, if they do talk about how well she's doing, they're knocking on wood. 

Yeah. It's been fun to just hear all these different things. It sounds like a lot of us have similar superstitions or things that we're afraid, but the thing that kind of makes me, I don't know, like sad necessarily, but we're so afraid to say our kids are doing well. And that's sad kind of, because like they are a lot and you want to be positive, but. That's true. Yeah, I feel like it's a control thing, like we were saying Yeah, I do too. It makes us feel like we're in control, and they're not gonna go in the hospital, so we do all these things, but yeah.

Rhandyl: But they're all probably pointless, but it makes us feel better. 

Deonna: It totally does. It totally does. Except for that girl checking her breathing. That might not be pointless. 

Rhandyl: Yeah, no, that's not pointless. Keep doing that. Keep doing that, girl. 

Deonna: That sounds like a good idea, 

Rhandyl: Hopefully you guys found this a little entertaining and maybe educational.

Yeah, , if you weren't aware of all these things that we always have on our mind don't ask a caregiver how long has it been since this whatever or, just be aware and always keep wood close. Um, But yeah, thanks for listening and we'll see you guys next time.

**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.