Rhandyl: Hey y'all, welcome back to Raising Disabled. Today we're going to start out with what we've been up to the last couple of weeks. And I know we talked last time, Deonna, you guys made a trip down to Houston. We did. How did that go? 

Deonna: It went really good. It had some ups and downs, but that's how every medical trip is, I have to say.

Believe or at least ours, but it went really good. We had a really easy drive there and it was just me and my husband and Allie this time. We have to leave our son back when he's in school because when they get up into those middle school, high school ages, it's just harder for them to miss.

Classes times, four or five days. So he always has to stay back, but he's okay with it. But yeah, she had a sleep study the first night. So I don't know if anybody else has ever done this before. This is so dumb. And we've done this multiple times now where we plan a sleep study, like the night of our travel day.

So you're so afraid that your kid's going to sleep in the car, right? So you're like, stay awake. And we leave it. Maybe four in the morning. So she's so tired. So she sleeps just a teensy bit at the beginning, but Oh my gosh.

You're like, please stay awake. Cause you cannot mess this up. This is like the whole reason we're coming down here. Yeah. She stayed awake and good was 

Rhandyl: fine. Did she sleep good? Yeah, she did. 

Deonna: And all of our listeners who have kids with neuro problems have done these sleep studies. And you're hooked to, I don't even know how many little leads you're hooked up to.

girls.. I'll have to share a picture someday of what the kids look like when they do this. It's funny. There's all these wires coming off their heads and then they put this, they I don't know if they do this with everybody, but they stick this mesh, stocking, mat type thing over it.

Yeah. Yeah. And it looks tight. I'm just like, I could never sleep with that thing on. I would just be laying there awake, but we bribed her with, Basically whatever she wanted the next day, we were like, we will take you to the mall and buy you whatever we want and go eat whatever you want. Just please do this for us.

So she slept so good. And we actually had the same sleep tech that we had back when Allie had an emergency during a sleep study. So embarrassing. Like we walk in and we're like, Hey, remember me? But at Texas Children's, they gave her a Build A Bear when she got done. And so that was cool. And so she was so excited about that.

And of course wanted to go buy the Build A Bear a new outfit that morning. So that's what we ended up doing. We go buy the new Build A Bear . A little fall wardrobe for her bear. And yeah, it's really cute. She has like boots you know, we always eat at our favorite places and do all that.

But then the next day we had urology. So she had a urology procedure in May. And so just checking in on that and they said it looked really great. So that's always a relief because. When it's something new, you don't know what to look for if there's like a problem or something. So that's been a life changing procedure that I have no regrets.

So happy we did it. And it's been amazing, but then we saw pulmonology. She's on event, Trey, cause most people know on this podcast, but they didn't even change any of our settings. That's easy. So that's always nice. Yeah, I know. You're like, okay. So all her sleep study stuff came back really good. And , so her vent is not being produced anymore.

So they talked about the fact that in the next year, we'll have to go back up there and get a different vent. So they told us which one it's going to be, and we got to look at it. And it looks, it made me feel less nervous. Cause that's like our kid getting a whole new set of lungs. Almost. It's scary.

Rhandyl: They told us that when you were there a few months ago, I was like, 

Deonna: I know it's like you get used to something and even if it's not that great, it's just the devil that, you know, so we have to switch, but I feel good about it. They've put a lot of time and thought into it, so I don't think they're just like flipping through a magazine, so I feel pretty good about that, but Then this is, this always happens.

I feel like you're having all these good appointments and then the last one, like kicks you in the butt or something, I don't know. We went to her PM and our doctor, which that's physical medicine rehab. , they handle the paralysis side of it and everything like muscles, things like that, and.

She was like, Hey, we're going to go get a X ray of her spine, which we knew she had scoliosis and it was starting I can't remember what the number was, but I mean, she has some curvature of her spine. We knew that was going to happen. It happens probably. I would assume in most spinal cord injuries and most kids who just are sitting in a wheelchair all day with low tone, so we did that and they were like it progressed 15 or 20 points. We're going to have to bring ortho into it. She may have to have, Complete spinal surgery next summer and me and Dane went from happy to just full blown depressed are you kidding me? Oh my gosh Got done with this surgery this summer and then we're gonna have to turn right back around and ruin her whole next summer With an even bigger one, yeah, that's me.

So we were like Oh, crap. Like this sucks, but then I know. Yeah. Good trip over, but I'm sure that I just feel bad when they're telling you that kind of stuff, but anyways we got back and we met a ortho person who we'd never met before. Cause that hasn't been in the picture. You try to 

Get rid of doctors, not add new doctors, you know, but cause it's a scheduling nightmare as so many other parents know, but anyways, long story short, , or actually a long story I already talked. but basically we ortho person and they said, No, it wasn't that bad. The x ray really wasn't even that good of an x ray image.

We'll redo imaging, but she's not even close to the surgery conversation. So it kind of was funny. We were sad, but then now we're okay, but it's just like 

Rhandyl: they're gonna try to do like a more conservative approach to it.

Deonna: Yeah, and she's getting a new chair that is custom fit to her body, whereas the other one wasn't. So I, they said it's practically like a brace. So I'm cautiously optimistic about that, but we've just been doing a lot of training. We've had a lot of nursing turnover and just training, getting new people in and all the things, but life never stops for us.

Ever, but Today we get to go watch my son play football and these days are just fun. He gets all excited and it's the cutest little thing ever. So I know he doesn't think it's cute. It's very serious to him and very, yeah, I can imagine, but yeah, I'm like, Oh, I want to take a picture with you in front of all your friends, but yeah, I know, but it's funny.

 So y'all been out of town to tell us what you've been up to. 

Rhandyl: I guess since our last recap, I, , I shouldn't say I, but I feel like I should have a medal for potty training my toddler. You should. Yeah. And I'm pretty sure it's accomplished, that's exciting. Yeah, he's potty trained. That's all good. He's like a prodigy. That was pretty fast. It was fast. Yeah, . He was ready. I didn't know if he was, but he was, so that's funny. Yeah. One out of diapers, so yay!

Deonna: I know, right? You're like, one probably forever, one out, whatever. Yeah. 

Rhandyl: Yeah. It is what it is. I know. But, , no, speaking of adding doctors, Remi, she holds her bladder forever and sometimes she'll hold it for over 24 hours before she'll No way. Have a wet diaper. Yeah, and then she floods everywhere. That's bananas. And sometimes that happens, yeah, sometimes it happens when she's constipated and we have to do, the bowel prep stuff and all the fun stuff. Yeah. She's just been doing it more and more lately. And so her pediatrician referred us to urology just to make sure that we're not having any sort of renal problems.

And yeah. Yeah, so we saw, yeah. A new specialist urology has not been on our list before. Yeah, so , we did, , all the scans and then saw the urologist and everything was good. Everything was clear. They just said sometimes, She said that she had another trach vent kid that does the same thing and Sometimes if it's been you know a long enough they have to end up straight cathing the kid at home and stuff So, but you know, gosh, you're just glad that yeah, we were just doing my world.

Yeah, I know But I teach you everything. Yeah, yes. Need all the sterile procedure information. Oh my gosh! No, but we're going to try to For your sake, I hope. No. No, but we are going to avoid that like the plague. But we're just glad that there was nothing, Bad that showed up and so hopefully that's just a annual checkup and eventually we don't have to go anymore.

Deonna: I know, right? Yeah, annual is the goal. 

Rhandyl: Yes. Yes. No, but my husband and I got About a week trip away. Actually, we just got back. From louisiana. We have friends there , and it's near lafayette. . But we had. a really good time. We had wonderful food and great memories made. Lots of my husband and I, we both love the outdoors, hunting, fishing. And so , we got our cups filled for the next little while because we had

Deonna: so nice y'all got to do that. 

Rhandyl: Yeah. It was awesome. And we came home with coolers full of Fresh fish and , you name it, we have it. And yeah, we have these awesome meat markets there that we love to get these specialty things that they make down there that you can't find, , here in Texas. And so yeah, we just love Creole food and Cajun food. And so stocked up on all that and all sorts of sauces and things like that, that to stock the pantry too. So we're good for meals for a while. So I'm excited about that. That's exciting. Thanks for having me. Yeah, it was a lot of fun. I'm 

Deonna: glad y'all got to go together, that's the goal with me and my husband at some point because it's just, it's good to get away from like the, it was nice. The grind, 

Rhandyl: yeah, and my kids behaved. Thankfully, we had, my mom stayed and then we had some friends, help out toward the end. Yeah. And Remi, Remi behaved. So I was Yeah, medically she behaved. Yeah. Thank goodness. Yeah. Medically, she's ornery she definitely didn't probably, 

Deonna: who cares if she actually behaves? I as long as she medically behaved. 

Rhandyl: Yeah. There was no emergency situations. This time we had the, A team at the house. It was all good. You got to. Yeah. But it was fun. 

And I actually, . Just this morning signed Remi up for the Special Olympics at school. Oh, I need to look into that. Yeah, and , this week they're having, , a fun day, and it's all the, special ed kids go and have this field day at one of the high schools in town. And I That's, Yeah, so I'm excited to see how that goes. This will be her first year to be able to do that.

Deonna: I need to ask Allie's P E teacher about that. Yeah. Because Yeah, that's who Allie might want to do something like that. Yeah. 

Rhandyl: . I'm interested just to see. I don't know what it's going to entail, but yeah. It should be fun. 

Deonna: If she liked baseball as much as she did, she's probably gonna like this. I think she's, yeah. 

Rhandyl: As long as she can go fast and, there's balls involved, she'll be, yeah, she'll be good. Oh, yeah. But, yeah that's about it. I could go on and on about our Louisiana trip, but, we actually did the math yesterday, and I, on our way home, we could have drove to Las Vegas faster than we drove home from Louisiana. 

Deonna: I'm so happy for y'all that you got to step away from it for a minute. It's a big deal, way bigger of a deal than regular people realize, like it's huge huge.

Rhandyl: Yeah. We definitely don't take our trips away for granted anymore, huh? We still be going. Before kids and especially, which Remi was our first, but yeah, never home in the weekends. Anytime we had a chance, we were off doing something. And so it's really special when we get to do that. For sure, even if it's just for a weekend, but this was a good long trip. That's been one of our first long trips away in a really long time. That's a good one. Yeah. 

Deonna: I'm glad you guys had fun. , we always just want to update you guys on what's going on in our lives so you get this little picture into what our day to day is like and just understand where just us two are coming from when we do these podcasts. And this next episode's really fun and we will see you there.

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com. Hey y'all, welcome back to Raising Disabled. So today we're doing another episode of dumb things people say. And this one, there's a lot of phrases that everybody says to us and it all basically means like, when are they going to get better? And so people ask us this all the time in different ways.

They'll say like, when are they going to be normal again? When are they going to be okay again? Are they out of the woods yet? Just all kinds of funny. When is she going to start walking? Everybody wants to know when this disability journey is over for us and we can just get on with our normal life.

And so today we're just going to talk about this question and why it's not okay to ask, and then maybe what you should say instead. And first we're going to get into how me and Randall feel about this question and and then we're going to share some comments from our listeners about what they say when people ask them this question.

Yeah. And these are fun ones. But first we're going to just talk about how this question makes us feel. I get asked this type of question sometimes now, it's a lot less now than when she first got injured. Like at the beginning, it was nuts. People just wanted to know when she was going to be fine.

And even if I told them she was not going to ever be fine, The same again, they just couldn't accept that as reality , but I did get it. I did get this question a lot in all different ways at the beginning because everybody was just so worried, I think, and it was really blowing people's minds that this could be happening to her.

I will say, and I've said this a lot, but. When random strangers ask me this type of question, I do not love this. At all. Yeah. Especially because, when they're asking this question, she's obviously with me. Otherwise they wouldn't know. She's with me and I usually just say some version of, oh, I don't know. Or she's doing well today, or we're just taking it one day at a time. I say the one day at a time thing a lot and Me too. It's. But I don't really give them anything else. , and this is where we sometimes differ on this, but I don't really feel the need to teach people about Allie's injury.

Like it, it isn't something it's honestly still, we're going on, this happened in November 7th of 2020. So we're getting close to four years of this and it doesn't feel like it happened That long ago, to me still, it's a very fresh feeling, for sure. And I actually don't like having to explain it and how she's probably not going to get better, to randoms and relive it, but if someone has a relationship with me and they ask me, I'm okay with it.

I'm a little more honest, and honestly, these people, I feel like, have different motives. They're not just like being nosy, but they're Right. They And they usually ask when she's not around. I've had a lot of people who are just kinda like, Hey is this ever gonna Resolve itself and then you can say, no I don't think it is.

This is our reality, and it's better when they ask when she's not around, which most people do and they genuinely want to know and understand what our life is going to be like in the future. But I tell them that. I don't know if things are ever going to be better, but like she's stable right now or that she's not been hospitalized , in years, I can tell him things like that and they can be happy for me, but , There's also, and you know what I'm saying, like things are just going to keep getting worse for us.

There's not going to be most likely like a deterioration, it's not going to just probably get better. It's probably going to get harder. And. , I think that's hard for people to hear. So sometimes I don't even go there. Yeah. But , I have a small group, on Facebook people who know me very well and I can post things that are going on with her medically and those people can handle it.

And so they know more of the truth, but I will say, and this is what a lot of these people that we talked to, I think they were more describing like interactions with people who are strangers possibly or people just coming up to them and they are very annoying and awkward and Sometimes they can say the weird stuff. Like when is she gonna get better? And it makes me feel like she's not good enough for these random strangers and they need her to be Better to make them feel better Okay, and I'm just like, I'm sorry. Like I, I can't make her better for you. You're just going to have to deal with her. And she's good enough for us, 

I was talking to my mom the other day and I was telling her that the phrase, this too shall pass really isn't my favorite because I used to believe that I thought every hard thing you're going through in life is going to pass. And then you're going to go back to normal and it's going to be okay. But.

That isn't our life, at all. And my mom said that what it should say is this too shall pass when I pass. And I said, yeah. That's basically, this is our forever on this earth. And me and you believe in heaven. We believe in this place where our kids will not have to suffer through these types of things someday.

Why? While we're here. It's happening, there's going to be struggle, there's going to be hurt, and that's not going to pass, it's not going to go away. So When someone comes up and asks you something like this it just brings up that thought to me. It does. This isn't going to get better, it's going to get harder, and that's why I don't like people asking these types of future predicting questions. Because Like we don't know, we legit don't know what's going to happen to our girls this afternoon, much less a year from now.

Rhandyl: Yeah, I'm like when I get that crystal ball, I'll let you know but no, whenever I started thinking about this question, it made me think back to when Remi was a baby and there was so much unknown and we were hospitalized and my husband and I were asking these medical professionals these exact questions um, all the time.

And unfortunately, they didn't really know because the only official diagnosis that she's ever been given is her airway issues and, so they would give us kind of false hopes unfortunately, hindsight, obviously. . , by the time she's 18 months. This should be, better or by the time she's in kindergarten, she should be just like her peers. We were told so many things and so , it brought me back to I remember me specifically, obviously asking these questions and in our case still, we don't have a good concrete answer for these questions as of now. And like you said, day to day, Remi, she does continue to progress, but we have no idea if that progression could stop or continue we have no idea.

I think in general, when people ask these questions, it comes from a place of curiosity, but also a lack of awareness or knowledge of disability in general. Like it's, disability is not an issue. Yeah, it's not an acute thing, more than likely it's not going away yeah, but yeah, this question, it definitely strikes a nerve, but it also depends on the environment in which it's asked and things like that , and sometimes I, I, I will take time to educate , I mean cuz it's just awareness at the end of the day you know especially in our situation. We have no idea There's some disabilities where it's just the way it is like a kid with a genetic syndrome or Chromosomal syndrome. That's never that's not going away. Why would you even ask that question? Like it's not 

Deonna: Well, and I think people accept certain things as permanent, like you're not going to go up to a parent whose child has Down syndrome and ask them when they're going to get over it because those are more of an understood diagnosis. Everybody knows what that is, but in a lot of our cases like yours where you really don't know what's going on or mine where it's an injury. You just think like they don't understand it, which makes it, them ask those types of questions. Of course. And, we don't understand it either.

It's one of those things we don't have answers to why she has her developmental delays. We just, we don't know. And so I usually just say, just, take it day by day and we don't even know, like you said, we don't know what's going to happen this afternoon or tomorrow or. Hopefully nothing. Yeah. Hopefully nothing. Yes. Hopefully nothing. Yeah. And it's confusing too. Cause like at Allie's school, there's a little girl in her class right now who broke her leg just a couple of days ago. So she was in a wheelchair and now she's on one of those scooters. She is going to get better and it's confusing to the kids how Allie isn't, they're like, are you going to get better? And Allie's like, I don't know. I don't think so. You know? And I'm just like, Oh my gosh, because this other kid's going to be walking in four weeks, I don't know. It's, it is confusing. It's definitely confusing to kids. And when kids ask me these questions, that's a whole different thing. But this mainly comes from adults that are asking these kinds of questions.

Rhandyl: This is definitely specifically for adults listening. So we wanted to share a couple of Answers that our listeners gave us. We asked them how they respond to these questions. And here's what they had to say. 

So our first one, their name. on social media is @dontsinghappybirthday, which I see this and it makes me laugh because for the last seven or so years anytime anybody's sang Remi happy birthday, she flipped out. So

Deonna: I hate people singing happy birthday to me. Like I, does anyone like that? Like it's my son, I understand this person.

Rhandyl: But they said, That's when spreading awareness happens. My daughter was born with a rare genetic mutation called PCDH19 epilepsy. There's no cure, unfortunately, just management and making sure that she's loved and the best quality of life that she can have. 

And another one. on the same topic. @kassaundrapierson says, I use it as an educational moment and I just kindly say that this will be one of many lifelong challenges she faces and gives a short summary of her genetic syndrome, which is CTNNB1 and the why.

And so I do think if this is asked in a compassionate way and you're in the right head space or environment, To have an educational conversation, that's great, but it's not always an option. Yeah. , like you said, if you're around Allie, you're not going to tell the full harsh truth to a random stranger. Like that's, doesn't make sense. And I understand the educational aspect of it and I do like to take those moments, but I also am aware that Remi can understand and if she's around and it just really depends on who is asking it and the way it's being asked. Being asked for sure, but , I like to educate a lot, but then it's just, there's just some scenarios where it's not gonna happen.

Deonna: Yeah, I like how they both have these rehearse simple and to the point answers, they've practiced these and got them down to one sentence because we all have that. We all have our little, I call it my elevator pitch story of Allie, like that one sentence thing like, Oh yeah, she fell and had a stroke and now she's paralyzed. Boom, we're done. We can move on.

When they ask if she's ever going to get better, that's not a one sentence answer. That is, that's a little different, but we say these things all the time, but I do like how they had their little. Quick answer and yeah, probably have said it a hundred times at least.

Yeah. Our next girl is @j_kcamp. And she said, I educate, but I'm probably more blunt than they were expecting. And this is, what's funny is if you are going to go up to a person and ask them if they're ever going to get better from their disability, You better be ready for the truth. And most people aren't quite ready , especially if they're asking that one, they may not want to know, but it depends on my mood.

I can tell if someone's being nosy and weird. And if Allie's not within earshot, I may tell them the truth. And they probably aren't going to love my answer because it's a tough truth. They don't want to know that. And it's probably incredibly upsetting to them.

But to me I've gotten less and less I don't know the right word. Like , to me, it doesn't feel like it's my job to sugar coat that answer. If they're crazy enough to ask me that and they don't know me, it's not my job to water it down for them. Like I might just be like, no. She's not going to get better. Thank you. And that's how I feel about it, but I think if , they know me and they're genuinely wanting to understand her and learn , , if Allie's not with me, I will tell them, I, I don't mind telling them, yeah, this is probably her lifelong situation, and yeah, I've answered before. And people just get that. deer in the headlights look. It is oh my gosh, I can't believe this little child is going to be disabled for the rest of her life. And I'm thinking, you really shouldn't have asked me this question if you didn't want to know.

Rhandyl: Exactly. Yeah, for me, I'm typically just very open to the fact that we don't know and only time will tell. Cause I really, there's really not a lot for me to say whenever someone asks me this.

But another follower,,, mccoin.michaela. Said depends on the person's energy and intention often. I just say She's feeling much better if she's actually been specifically sick But I sometimes will follow it up with her general condition is a lifelong condition or if I'm feeling sassy I'll just say yes, she's healed and I just laughed at that one so but this comment definitely hit all the feels because I Of course, if my daughter's recently had an illness or a hospitalization, it's way easier to answer a question like this, obviously, but , like I said, it depends on my head space and the way that you ask me, my knee jerk response may not be PC I don't feel like he's, yeah I, yeah, , and it's just, it's really, it's true the way that it's asked and who it's coming from

Deonna: yeah, it made me laugh how she had three different answers and she probably has even more than those like ready to go, depending on what's going on, who it is, where you are, like everything. That cracked me up. I change my answer up all the time, depending on what's going on, but like you were saying, Hey, is she doing better or something like that?

Because our kids do go to the hospital they do get sick. And when people take the time to care enough about it, remember it, ask if she's feeling better, those people, I will tell, hey, yeah, she's doing this, or she had this surgery, or , thank you for asking she's, doing better than she was. And some people will even ask me like, is she doing better than she was three years ago? Oh yeah. She's doing way better than she was three years ago. Like in the course of 20 years, she'll probably have atrophy or deterioration or things like that. But right now she is doing way better than back in the day. And I have a lot of people ask me that. That's a totally different thing. But it did make me laugh how she had three different answers. I understand that a lot. 

 . Our next one's from @mamijv on Instagram. And she said, depending on the question and how it's asked or the relationship I have with the person asking, usually my go to answer is she's doing better than expected, which kind of made me think about Remi.

I mean, That's so true for her. And it said that usually opens up the conversation about what's usually expected of children like my daughter. And I sometimes say something like this because I honestly cannot believe she survived 2021. So the fact that she's even alive is crazy. And so, um, I do sometimes say things like this. I'm like, Oh man, she's had so many, Horrible emergencies that her just being here today is a miracle in itself that she's still with us, And so what do you think about this? Because I think this one applies to you. 

Rhandyl: Yeah, this one definitely yeah, when I read this one, I was like, this is exactly how I feel and how I respond a lot of the time. I generally say something to this effect. Yeah. It's a miracle we're here and tomorrow's another day, basically, because, yeah. The future's unpredicted for, yeah, it's unpredicted for all of us, but, yeah. Yeah. It's very elevated when it comes to our situation with Remi, yeah. But yeah.

Deonna:  I like this answer. I may start saying something like this too. 

Rhandyl: Yeah. Yeah. It just leaves it open ended in that way. There's not a whole lot of follow up questions.  

Deonna: And it's something you can say in front of your kid because Allie knows that she's almost died like 30 or 40 times. So for her to hear that, she's phew, no kidding. It is amazing I'm here. She knows. She's experienced near death multiple times. So I feel like that's an okay thing to say in front of your kids, if they're aware, of what's going on. 

Rhandyl: 

Yeah, I agree. Our next follower @amber_l_robertson, said, I try to explain her disease and the fact that she will never be out of the woods. I wish people would do a little more research before they say things like this. And I totally agree. People are sometimes just so naive to disability and having to explain this often is, honestly, it's exhausting for us caregivers.

Deonna: Yeah, , and like we were saying, if they're a complete stranger, they won't have researched it. They're just being nosy, but 

Rhandyl: I just can't even imagine. Maybe it's now me because I am raising a child with a disability, but , the audacity to go up to someone and ask this. I just don't, I can't comprehend it, but. 

Deonna: Yeah. No, it's awkward. , I feel like this is why you should never ever ask this question out in public to someone you don't know. This is just completely out for me, saying this. Yeah. Because when we have to say like what she's saying, her kid's never going to be out of the woods, those words are painful. That's a truth that is very painful for us. Almost, it could be incredibly anxiety triggering. It could make some of us, it used to make me feel like I was going to have a panic attack. Like at the beginning, I'm a little more used to having to have these, conversations with people.

But back in the day, it was so hard to talk about. And it brings up trauma that I think most people actually can't handle hearing about. , they just want the scoop, but they can't actually handle when you give it to them. I know, I do. I do think that when people are asking this, like she's saying, it's forcing her to say a painful truth that her child will never be out of the woods. That's a tough one. 

Rhandyl: Yeah. So our next listener Twyla Penner said oh, is there something wrong with him now and then wink and tell them I Know and then I wink and I'm open to answer any questions, but I also steer the conversation so that it respects The guy who's taking it all in her son.

. And this one cracked me up. I think I'm gonna start answering like this, but you can get away with it. , but also respect that my daughter does hear and understands conversations being Yeah. Had around her, even though she doesn't communicate in a typical way. But, oh my gosh, this one was. How I laughed out loud for sure when I read this I, 

Deonna: maybe Remi would think it was funny.

Rhandyl: I think she would not like, I think she would crack up laughing. I really, like if This complete stranger out in public comes up and asks me something like that. This is so funny. Yeah, and then it would just make them feel even more awkward. Like they already made me feel awkward. So there you go. 

Deonna: So bad, this comment is really funny and I hope she legit really does do this because it's so funny, but to me, it brings up a pretty important point that we've talked about a little bit today, but our kids are listening and. They may not know their condition is lifelong, like with Allie, I think she's starting to get, we've never just sat Allie down and been like, Hey, , this is forever. , there's no hope, like it's over because we don't want her to get depressed. She's a very young child, right now. Yeah. And and it's hard for us to bear that thought. Even for her and she's, but she's picking up on sometimes we'll say stuff about her being with us when she's an adult. That's not something parents say about their kids. So I think she is starting to slowly pick up. Okay. I'm going to be with my mom and dad or, like she'll ask Cole, can I live in the same town as you? Like , she knows that this is going to be a very long term thing, 

but you. We've never sat down and really had that conversation exactly because honestly, you don't know. We were saying, there's so many crazy things happening in the medical world and I don't know if it's going to happen fast enough for our kids. I don't know, but yeah, there's some crazy stuff happening and I know. I'll never count it out completely. I'm always going to have a little bit of my head in the clouds on this one. But I do think people assume like looking at certain kids, if they have a trach or they're in a wheelchair that they can't hear and understand what is being said around them. 

And I would tell. Anyone listening, always assume kids can understand, always always, because you don't know. Even us as parents who have a nonverbal child, you don't know the exact amount they're taking in or not taking in, so you just have to assume they're taking it all in, really, 

Rhandyl: exactly. No, that's great advice for sure.

Yeah we like to end these conversations about dumb things people say to what to say instead. This one's tough though, if you're not close to the caregiver that you're addressing and asking them, are they out of the woods yet or when are they gonna get better? Don't even go there. Don't even go there. Yeah. Yeah. . Because some disabled children, their prognosis are, they're progressive and they're chronic and these are very touchy subjects. They can be very hard when you're asking, very triggering to caregivers or like for example me I have no idea, so I don't know besides like we said, you know If they've been sick or there's an acute situation going on or obviously just checking in but I don't know I just don't think there's a great

Deonna: Yeah, usually we have, like with our other parts of this series, we at the end can tell you, Oh, instead of saying this, say this. I honestly can't think of a good alternative that is similar to this. I will say yeah, just don't ask this ever. I think in public, if you're a stranger, you don't have to always talk to families with disabled family members. Like I know people, especially in the South, just feel like they have to initiate conversations with us everywhere we go.

It's exhausting. Like I was telling one of our new nurses, I'm like, She was off with her by herself for a few minutes. And I said, I'm just letting you know, people are going to come up to you and talk to you when she's with you. And you just need to get used to it because it's going to happen every time you take her somewhere. And she's like, are you serious? I was like, yes, I'm just. more than you now. And they were away from me from at Barnes and Noble for maybe 20 minutes, and she said multiple people came up to them. And it's just like everyone has to come tell them something or say something, but you don't always have to do that unless you're just like waving, saying hi, making a connection.

Those things are fine, but I actually don't think it's. Ever okay to be coming up to someone asking them to try to predict the future and force us to tell you Whether we think our kid's gonna be okay or not like that's just not okay. I can't even yeah, i'm like you I can't think of , anything you can say.

And I will say there's a lot of people who we know who have taken the time to learn about Allie. And they know, like we've told them, it's came from us, like we've said, Hey, this is tough. This is not going away in a year.

This is our permanent situation until she's no longer with us, which is like a painful thing to think about also, you know, but Yeah I think that's something that if you're curious about, you need to build a relationship with someone for a long time, and they'll eventually tell you , but I feel like the only exception in public is let's say someone came up to us and their kid was almost like a mirror copy of Allie, had been in an accident and had a vent or a trach. It'd be okay if that mom came up to me and was like, what are the doctors telling you about prognosis or something like that? But yeah, outside of that, I just, I don't know. I think this is a big no. 

Rhandyl: Yeah. Same. . So we like. To do these every once in a while these dumb things people say. And it's really just to spread awareness. Honestly, and that's why we do what we do, but these topics all these phrases that we discuss are really important. Very triggering to most caregivers, and so we just would like to continue to spread some awareness on things you should probably just not say to us and , we hope you guys took something from this today.

**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.