Rhandyl: Hey all, it's welcome back to Raising Disabled. So it's been a while since we have released a new dumb Things people say episode. And I feel like it is time. It's time. Um, Yeah, we do these episodes for awareness and education and we recently did a social media post asking other caregivers, what's the dumbest thing someone's. I told you, and we had a lot of people respond and it was really, it's funny, but it's also like, ugh. You know, We're not the only ones that get this all the time. 

Deonna: Some were so bad I couldn't, I know believe some of them. 

Rhandyl: Yeah. But As caregivers, were told so many things that are outta line. And that are. Outside of our boundaries. And so today we're discussing the topic of unsolicited medical advice. We get a lot of it. Advice is given to us by people outside of our children's medical team. Almost a hundred percent of the time. So, friends, family, strangers. Everybody.

Yeah. So if you're a [00:01:00] parent or caregiver of a disabled child, I'm sure that you've been given suggestions of possible cures holistic, yeah, holistic healing therapies. I mean, you name it to improve your child's diagnosis that you've. Been told numerous things, which we'll go through some things that we've been told personally and what other people had, commented on our social post.

I mean these suggestions most of the time , I think they're given to us with good intentions. Like most of people say yeah, but we honestly don't. Need the unwarranted advice, so, as caregivers, especially with topics like this, we have done more research regarding our children. Countless nights of no sleep, researching, reached out to, I mean, mountains of doctors and mm-hmm. , Quite literally searched for anything that can improve arc. Kids' quality of life. Um, Yep.

And so for example, of course essential oils is [00:02:00] always one of the big ones. Yeah. , Have you tried, putting this on their feet or whatever. Chiropractors, I get told a lot, cutting out specific things out of her diet to help with something, which can help for sure. But yeah um, and of course all the intensive therapy programs that we have. Mm-hmm. None locally, like that's, so Crystals I've had people tell me to get a crystal for her room and I'm just like, mm-hmm. all the vitamins you can, that makes me laugh, yeah. . What about you? What are some crazy 

Deonna: Yeah, We've had a lot of those suggested to me. I've had when we were in, in the hospital within the first week of Ally getting hurt, we had people telling us we should pull her out of the hospital and go get stem cell transplants or whatever, stem cell therapy in Mexico. And I brought that up to the doctors and they about laughed me out of the room. That was not something that was even. Like a thing, yeah. We've had a lot of people with the [00:03:00] CBD/TCH, oh, yeah. Telling to give her THC and things like that. The crystals. No, that one's fun. But supplements yeah, lots of different supplements, oils for sure. And it always cracks me up when people think an essential oil is gonna cure something like a spinal cord injury.

You're just like, no, but chiropractors, which I'm like, I would never do that like with Allie. I mean, her backs is already so screwed up. I'm not gonna let somebody start. And I've been to chiropractors myself, but not for her. But yeah lots of physical therapy intensives, which. With us. Those do work for kids who have had some sort of paralysis.

Like we have a little friend whose name is Scarlet and she's going to a lot of these physical therapy intensivess. She's making progress like her. She has a. Incomplete injury, essentially. Yeah. Like when you're in those situations. Yeah, let go.

I mean, we almost went to one in [00:04:00] Kentucky that they're at right now, but then when we talked to the doctors, they were like, Allie has a complete spinal cord injury. There is no improvement, no movement whatsoever. If her hand started moving or. L controlled leg movements or torso, core movements, yeah. Go to these physical and therapy intensives. Yeah. But there's no signs of progress whatsoever, so you would be wasting 50, 60 grand to go. Just make yourself feel better that you tried.

I mean, so it's, but it is hard and we've had a lot of people. Friends, family, strangers tell me and you to do these things. Oh, yeah. And I do think they're trying to help. I really do. But we're just gonna talk today about when you say these things, kind of what it does to us as parents. Yeah. And then things you could say instead, if that makes sense.

 So the first thing we're just gonna talk about is [00:05:00] what does it do to a parent when you suggest these types of cures to their child or about their child? So, when I think for me, especially when people suggest these type of cures, it makes it hard for me to accept. Allie's diagnosis, right? Because they're kind of, I've accepted it. And that was something that took a lot of work and sadness, honestly, a lot of grieving and things like that to accept. And then when people just come up to you and are like, oh, if you. Do this or that. She'll be cured of her spinal cord injury.

You go look into it and then you feel like stupid when you realize it's not indeed a thing, yeah. But it kind of gets your hopes up for a few minutes or hours or whatever. And. Usually people that are suggesting, these are not medical professionals, they are not inside the disability community, [00:06:00] so they have no like basis or anything to back these up. And I kind of feel like these comments, I don't know about you, but I feel like it puts pressure on me like to fix Allie and that it's my responsibility to fix her and that I'm not doing enough because I mean, I'm listening to these. Top doctors in the United States in their fields who are like, this is what it is, and you guys have to accept this.

And if there's ever anything that comes open, we will let you know if there's trials or anything. But like right now, yeah. This is her life. And the sooner you kind of accept that, the better. And so, that's kind of how it makes me feel when people say stuff like this how do, what do you think about that?

Rhandyl: Yeah, so for me it's hard because Remi is still undiagnosed. so I already have all this guilt on what, could I have [00:07:00] done? While she was in utero. I mean, guilt from all the way back to conception to almost nine years later. And it took a long time for me to accept that. We may never know. And when someone says something like, have you tried this? Especially when it's. Someone that is, not at all in the medical field of any kind, and they just, possibly watch some Netflix series or saw, read some article on Facebook, a video or something, and they're mentioning things like that. To me,, it's just frustrating, honestly. Mm-hmm. Because I. Have done so much research and had so much stress on, what can we do? ,

We've been to the top two hospitals in the US to find answers and. We're gonna keep trying with the whole genetic thing. We recently saw a geneticist and we're redoing the [00:08:00] whole trio genome sequencing. To keep everything up to date in case. Yeah. You know, , Remi is who she is and these holistic things are not going to change her. And that's fine with me. She's living, her best life. And so, yeah, 

I get the same feelings. People, not accepting that she's disabled and that they want her to be mm-hmm. to live this typical life. And, that's not what God had intended for her. No. So it's just, the fact that , I've been able to accept it and then strangers just can't, it's very frustrating. 

Deonna: Well, and I remember when we first moved here, I had become friends with a couple girls Samantha, who you know Yeah. And Deanna and Stephanie Speed, who we both know and has four disabled kids who have different diagnosis and things like that. And I remember Stephanie saying something one time, and I was still pretty new to this. I [00:09:00] mean, it was back in 2021, but, and she probably doesn't even remember saying this to me, but I remember we were talking and. I just said I gotta do everything I can do. I gotta put her in this, physical therapy intensive, I gotta go do this, I gotta do that. I mean, it was just like all overwhelming. All I thought about was fixing Allie and Allie wasn't good enough. It felt like it just felt like that to me. And I remember her saying and it kind of really stopped me in my tracks, but I remember her kind of saying something to the effect of at some point you're gonna have to accept this and be okay with who she is now, and let that old like girl go essentially.

Well, I'd kind of started to do that, but like I always thought there was gonna be some, 'cause I mean, today's day and age, like medical stuff is so highly advanced. But it has not caught up with spinal cord injuries, like those are usually pretty final and they're pretty bad. But I just remember her kind of [00:10:00] saying something to the effect of that you gotta accept this and you can do what you can do, but you may not be able to fix this.

This is outside of your right. Or whatever. And then it kind of made me feel relieved in a way. It was kind of hard to hear, but then it was like. I can't fix this. This is not something that's gonna get fixed. And so the sooner I wrap my head around it and just love her, but I do always think us as parents, we live one foot on the ground, one head in the cloud, like our head in the clouds, like we always kind of hope that something could change or get better and stuff does happen but usually the stuff that changes or gets better, it's stuff that only we notice like. Right, like Allie can sit in her wheelchair without her headrest anymore. I never in a million years thought she'd be able to do that.

Or Remi. Yeah, that's huge. Saying like the word go or whatever her new word is. Like you never thought she was gonna talk, probably, ever. I mean, these are huge things to us, but to everybody else, it's like, [00:11:00] yeah, but they're not normal, so you need to fix that. Yeah. And we just can't, 

Rhandyl: well, and her saying that to you, i'm sure came across very differently coming from someone that was a. Parent of multiple disabled children. If someone, oh, for sure. She lived it random. Would've just told you that. Or even a family member. You probably would've taken it like a whole nother level, 

Deonna: yeah. It would make you mad, but coming from somebody who lived it, you're like, okay, yeah. I gotta get on board. Yeah.

Rhandyl: Yeah. Well, and most parents. I want you to respect their child's diagnosis and just accept it with them. Kinda like I mentioned earlier, when you're constantly being told, have you tried this? Have you tried that? It makes us feel like we've maybe given up or we've done something wrong. Yeah. We already have enough pressure 24 7 to care for them and, yeah. Like in their current state. Yes. We were constantly and we're literally living this day in and day out, like people that are saying this to us are [00:12:00] seeing us from the outside, like through our social media or just at a random Yeah.

Yeah, a few times a year, whatever.. So sometimes. Suggestions like this can possibly improve certain symptoms, 

Deonna: like CCB D or something like that. Yeah, 

Rhandyl: Yeah. But they're not going to cure something like a chromosomal or genetic disorder, spinal cord injury. Like no. By all means, if there's something that's gonna help our child live their best life with their disabilities, we'll do anything for that. So, yeah, I , I have Remi on all sorts of over the counter, vitamin supplements and things like that. Same to help her, but , I obviously know it's not gonna cure who she is. It's just, helps her immune system or whatever maybe. 

Deonna: Yeah. It's not gonna make all her disabilities go away. No. 

Rhandyl: But I think there's this damaging belief that everything can and should be healed and us parents of disabled kids are, are usually forced to accept it, and it's a lifelong diagnosis [00:13:00] most of the time, and it's hard. To do when our trusted circle can't accept it. And so when we get especially when it comes from someone in our family or close to us, we just want everybody to realize we've been at this a long week, we've accepted that our kids are who they are and There's not a one all cure, 

Deonna: well, and I feel like in my situation, I don't know if you felt this way, but I remember initially too, like all the. The women in my life were accepting it faster. Like the women were all like, this is what it is. Let's all get on board. There's nothing that we can do except for the things that Deonna and Dane have said.

Her maintaining range of motion and not getting too stiff. And like we put, we get her in her zing stander and we put her, hand splints on. We do all these things to protect her body. And that in itself is a full-time job. Oh yeah. Just maintaining her body [00:14:00] in case there was ever some sort of medical mar miracle or something.

Yeah. But I feel like the men had a really hard time accepting her diagnosis. Like it was, I mean, my dad had a hard time and I think it's 'cause my dad's personality is he's a person that likes to fix things. Well. This is something that couldn't be fixed. And it just, I remember he was like, can you take her to this place?

Can you do this? And I think it was like, when it comes from your inner circle, I take it better. 'Cause like with my dad, it was just like, he was desperate to find something that could fix her. And my husband was like that too. Like he was researching like, 'cause Elon Musk is trying to. Paralysis and he's doing all these things.

And I didn't even look into that and, but my husband read everything there was to know about it. My dad was reading about it, yeah. So I do think even like from a gender standpoint, it was [00:15:00] interesting in my family because the men were just having a really hard time accepting it. They wanted to find something, and yeah. Did that happen with y'all too? Or was it. 

Rhandyl: Um, Well, we were just given for years. , 'Cause nobody could really figure out Remi and so we were told by these, really well known doctors, time will tell she Yeah. Originally she's, she's gonna be a normal kindergartner at that age, right. It's just an airway issue. 

Deonna: They had no idea. 

Rhandyl: Yeah. And so. Once I got to the point to where I'm like, okay, this is probably forever. This is serious. how Remi is. Yeah. But I feel like it took my husband a lot longer too, accept that she wasn't going to be, I could see that a typical kid. And. I think same thing for the men in my family and things like, it's just, I think it was harder for them just because there's so much unknown with [00:16:00] her, , but I agree with you. I think it definitely, I. Took them a little bit longer To grasp it. Yeah. Yeah. 

Deonna: Because I think they felt like they couldn't fix it and they were giving up, whereas we just, it was like an acceptance, but for them it was like, I've given up and now she's not gonna get better. It's kind of like a control thing, like none of us have control over this, but we wanna kind of feel like that.

That's why we. Get, feel guilty and do all these things. It's I think Amanda was telling us that it's just we wanna feel control so we feel guilty or, yeah. Like we could do something. But yeah that's a tough one. So if you, let's say you feel very strongly as someone who's in their inner circle, which we'll talk about this in a little bit.

If you're a stranger, this isn't really your thing unless you are very knowledgeable about something. We'll get into that in a second. But if you feel strongly that something could benefit a child or a disabled person, I. [00:17:00] First you have to consider just that timing is everything.

Like I had people suggesting that stem cell crap, I mean, right out of the gate and I was like, dude, I like, I have barely i've, I hardly have even gone home and came back to the hospital and you're telling me to go to the stem cell, I mean, it was just like, yeah, you're not like, you need time to kind of figure some things out.

And I was so vulnerable and I just remember, asking these doctors, I wouldn't do this stuff now. 'cause I'd be like, no, there's no basis for that. It's stupid. Sure. But you know, back then I was like asking doctors about all these insane things that people were saying to me and they would just nicely be like, that's not something that will help.

And they're all nice. They probably think I'm like a crazy person. But like with the timing, like we, for example. We changed something with Allie's, one of her routines. [00:18:00] Okay? Well, I know three other girls who are paralyzed. I know their moms. We talk every once in a while. Well. I wanted to try something very different and very, for us. Yeah. And it was with my doctor's permission. I told them what we were doing well, it worked great. And so we did this for, we've been doing this for about four or five months, right? Yeah. Well, I wasn't going to tell those moms. What we were doing and that maybe it would work. I wanted to try it first, make sure it worked.

Then I will tell these girls who trust me because I know what I'm talking about because it's my life, right? And I might be like, Hey, I just wanna tell you, we change this, we do this now. And our life is 10 times better in this one category of life. You know what I mean? Yeah. And so I just now feel comfortable. I think we started this back in like April. I just [00:19:00] now feel comfortable telling these moms, Hey, we changed this up and it's a thousand times better. This is what we're doing, and I'm just telling you in case you wanna try it because it's awesome.

But I mean, even with Allie, Allie had a big surgery. I would've never told another mom to do that. But now that we've been out from that surgery a year and it has drastically improved her quality of life, I will tell other parents in this, category of being like in your chair and just stuff like that. Hey, we did this. It was amazing. It's worth it. Yeah, I'm just letting you know, it's not like you should do it. It's just you can give that advice because you've lived it, you've tried it, and the timing is right. Like you, you know that this could benefit their child. With their doctor's like approval, if that makes sense.

Sure. Of course. But, I think that's the difference is giving people advice when you've tried it or [00:20:00] no. As opposed to just, oh, I saw this, like video or read this book, or, yeah. Whatever. So. Yeah. Have you guys ever had any experiences with that? 

Rhandyl: Well, . Similar to your experience with take her to Mexico, do , these Yeah. Stem cells , we once, Remi was diagnosed when she got that very first bronchoscope and they were like, she has severe malacia, like mm-hmm. 99% occlusion. Just shut off. Oh my gosh. And so then we advocated, and the neonatologist here was locally was great, and got us transferred. I was like, we wanna go, if we can the best of the best.

And my husband and I were a. We had been doing this research and I think we had heard about it from someone else, it was pretty new at the time. They were doing these 3D printed tracheas and they were implanting them in. That's crazy. Kids, adults they were starting to trial 'em on kids with malacias, like Remi. And so we were like, this is the answer. This is the cure. Yeah. [00:21:00] This is what's gonna be, it's the thing.

So as soon as we got there and we were able to see ENT, we started bringing this up. We were , dead set. We're gonna convince them like maybe they're doing this here. Maybe they can transfer us wherever they're doing it. Yeah. And so when we brought it up, they , they informed us that these specific surgeries were extremely risky. And like they wouldn't Oh, for sure. They wouldn't even give it a second thought. And we were so frustrated we started looking for third and fourth opinions, mm-hmm. but crazy, like different countries that would do it Well, really soon after. I would say a month or two after these conversations and discussions had went on, there were all these complications documented on the specific procedure and super serious infections and even deaths. Oh my gosh. It's not even, I don't even think it's something they do. Yeah, no. So to say that we're thankful that the doctors were transparent with us at that time [00:22:00] is, yeah. It was, I mean, that's an understatement so that's just an example of, that's, 

Deonna: well, that's of the risk of being in these trials, like on the outside. Everybody's get Allie in this trial. Get her in that trial. And me and Dane have to be like. Well, Allie could die if she does certain. Yeah. Remi could die. I mean, this is yeah. We want her to, get, be able to walk again or whatever, but at what cost? Are we gonna go risk her life? Yeah. I mean, it's just really tricky. We have to think about this stuff and random people don't, they don't care. Yeah. It's not their kid, so, yeah. 

Rhandyl: No, but the timing definitely is everything. Definitely don't, especially in the beginning, like when everything is so fresh and new and we don't even mm-hmm. We don't even know what's going on.

Deonna: Our kids are like barely hanging on to life. Yeah. Like the least of my concerns was her getting completely better. I just didn't wanna lose her completely. Yeah, exactly. I mean, that was my feelings back then, but 

Rhandyl: [00:23:00] yeah. So one thing that , we want our listeners to know that may not be in our situation is we really just want you to focus on the beauty of our disabled children and not mm-hmm. fixing them. That's what we do every day. We are observing what brings them joy. That's really all that matters. Um Mm-hmm. At the end of the day is, they're living the best quality of life that they can with the diagnosis and whatever disability that they may have.

They bring so much joy and love and that's what we see. So if you've listened to our episodes with the other caregivers, I mean it's across the board. I feel like we all find the same, so much joy in all these little positive things that happen. And Remi's the happiest, carefree kid, and I couldn't be more thankful for that. And. There's no crystal ball that's gonna make her typical and that's fine. 'cause she's great, she's awesome. We love our kids and yeah, it's 

Deonna: Can you imagine life without her? I mean, it's crazy to think [00:24:00] about I mean, even, and I feel like people accept, this might be a huge generalized statement, but I feel like people accept kids who are born with really stereotypical, like well-known, disabilities, like Down Syndrome or things like that.

They're like, oh, we love our, they don't think they're gonna fix Down Syndrome. Right. They understand it. They're like, this is a lifelong thing. It's, it is what it is, and they see the beauty. Quicker than when it's like an undiagnosed thing like you, or when like when your kid gets hurt, they feel like, well throw a bandaid on that. She should be good to go. But that's, yeah, that's not how it is. And I see beauty in Allie that people, even at camp recently, it was cool to see people make that transition from. Seeing her chair and her vent and her trach to seeing her. Yeah. Like over the week that happened. That's great. With a lot of the kids, but yeah, that's the only thing we see. We really don't see the [00:25:00] medical no. Like side of them. It's just them, and they're pretty cool kids. Both of 'em are. Um, 

Rhandyl: Oh yeah. , We just wish people would accept that not everyone in the world is meant to be typical and, nope. Changing a diet, putting a crystal in their bedroom, lathering them with essential oils and THC yeah, it's not gonna fix 'em, but No. Yeah. 

Deonna: We're, I'm gonna buy you a crystal though, just to be funny and you have to put it right by her bed. Yeah, I think sometimes they think of the, I think people think of this as a way to support us and I kind of get that and yeah.

But there's things that we need. Instead of cures or medical advice. And I mean, we need emotional support. A lot of us have really bad trauma experiences or PTSD, anxiety, depression. I mean, all the list it, the list goes on and on. All the things. Me [00:26:00] and you, I mean, me and you are super open about this with each other and with everybody that listens to this, I mean. I'm so screwed up mentally, like from everything that's happened and it takes every ounce I can do, every day when I get out of bed.

I don't know about you, but I literally get out of bed and I'm just like, here we go. Like I, it just is and maybe every mom feels that way every day, but it's just like the amount of things I have to do and. I mean, I can't even think about a cure for her. I'm like, I gotta keep this girl alive today a alive like's, let's go.

But we need a lot of emotional support. Oh, yeah. Good friends who actually care. I mean, we have good community with each other, but it is nice having community with even people outside of this life and it's possible, for sure. Yeah. Respite we need breaks sometimes. There's times where Allie's just playing with somebody for an hour and I can go sit and read a book and it's nice. I mean, yes. Just [00:27:00] little dumb stuff like that.

We need advocacy. Like the other day, somebody told us at camp, they said to move allie's van, and like this whole thing. And one of the ladies that works at our camp was like, she's not moving this van. She's disabled. And I mean like we didn't have to say that somebody else who's outside of that disability world did that for me. That's awesome. You know, So it's okay, I don't have to be that. Be that person today. 'cause we always have to be like a total all the time.

We do need. Acceptance from people and I mean, even someone to just make you dinner, like those types of things would be huge. If I didn't have to go in there after doing everything all day and cook dinner and do all the ba, I mean, it would just be huge. I mean, yes. What else? What else do you think about what we need instead, kind of stuff. 

Rhandyl: Yeah I agree with, everything you said, especially the [00:28:00] respite, finding. Some way. I know it's harder with, kids with more medically complex things, but that also comes with we sometimes it's hard for us to just step back, and so giving yourself some grace. As a caregiver, if someone's offering to help you in a certain way to give you a break , you should do it. , That was really hard for me to do for a really long time. And same I know so many caregivers that just, you get burned out and so, yeah. I think taking that and even if you're still right there, but being able to, step away for a minute and just do something for yourself. Whether that's being outside or reading a book or just going and taking a shower. Little things like anything Yeah. That you 

Deonna: want that makes you feel showers have become vacation for us. 

Rhandyl: Yeah. And I love it when we're. Out and about. And we know this world is definitely not handicap accessible. No. And so [00:29:00] whenever we're struggling with a wheelchair and someone just opens a door notices, it's just so, yeah. It's oh my gosh. I mean, it's the best. So 

Deonna: that's how it was at camp like. Yeah, it was, I mean, high school boys would notice me struggling pushing her, and then these mm-hmm. the same consistently boys helped me push her all week, and that, I don't even think that can be taught. It's just like an awareness of someone needing you, it's, yeah. Yeah. It's pretty cool. 

Rhandyl: The dinner would be nice for sure. 

Deonna: Oh man, I would love that. Seriously, this is our plea. Please make us food. No. 

Rhandyl: So one of the other topics we wanted to talk about was what to say when someone gives you unsolicited medical advice. Oh gosh. I have to stay PC here, but no, I know, right. 

We came up with a few phrases that you can say back and you could [00:30:00] just, say thank you, but we're working closely with our medical team and we feel good about our current medical plan. That's simple. But basically. Like back off. Stay in your lane. Back off. Yeah. Yeah.

Something like, it's much more complicated than you realize, and that kind of advice suggests that we aren't doing enough right now and we just need support. That's another get your point across, I mean.

Deonna: Well that's very true with Allie. I mean, para paralysis is complicated. Like it's not just her. Not moving. There are things that Oh yeah. You could not, well, you kind of know, but like from me telling you, but it is complicated. There's so many things that can go wrong. I know. I remember learning, never would know.

Rhandyl: I remember learning in school about spinal cord injuries. Mm-hmm. And the aftermath and everything you have to watch out for after it itself, everything shuts down.

It's not just they can't walk or anymore or move their arm. Yeah. Like it's a whole, like sy it's a whole system thing.

Deonna: Their heart quits working, right? Yeah. Everything quits. [00:31:00] So yeah, it's, I like that one. 'cause things are always more complicated than people know. 

Rhandyl: Oh yeah. Something else you could say is these kinds of treatments often target desperate parents and we've chosen not to go down that road but to trust our specialists.

And I have been that desperate parent. Me too. And I think at some point we probably all are, US caregivers are desperate for any, for sure. Oh yeah,. And I could still live in that world because there's so much know me too with Remi. But I've chosen not to. And so when people, give us advice or suggestions hinting towards some sort of a cure, , it sparks up those feelings again. Like, I'm not doing enough. And so, yep. So that's something else you could say.

And something simple like it's a lifelong diagnosis and there currently isn't a cure, like literally.

Deonna: That's our, our vibe. 

Rhandyl: Yeah. And then, just asking them straight up, where are you [00:32:00] getting your information from? 

Deonna: And if it's Facebook, move along. Yeah, Facebook, oh my gosh. Like Netflix documentaries. Yeah. Like did you mean a medical journal? Oh, you didn't? Okay. No.

Well, in the desk, like when it comes to the desperate parent thing, like you were saying, I do think we all are very desperate at the beginning and then. But I like, I don't know if I necessarily always agree with the stages of grief, and I've been through this with Allie and now with accepting my brother's death.

But you know, acceptance is kind of always that final feeling. And sometimes you can recirculate or back through the feelings and they're not all in order, but it's, but I mean, we're all trying to work towards acceptance. At some point and years later I've seen parents who 10 years after a spinal cord injury have still not even remotely accepted the fact that their [00:33:00] child with a traumatic brain injury or a spinal cord injury, like they're not gonna go back to the way they were, it's just not going to happen, and that's. So hard to accept like going to a funeral of your child. Hard to accept in a way. But if you don't do that, then your whole life is gonna be just chasing these rabbit, chasing all over. And I feel like you'll look back on your life someday and be like, she was there.

And I think that's where I kind of fall on it with Allie is and you I know you're the same way. Like Remi's here right now, I'm gonna love her and I'm gonna do what I can do. Like we are both really on top of our kids' medical needs. Yeah. But we're not chasing these little dreams, it's like we're doing what we can do, but we're playing baseball with 'em and taking him to camp and having fun with them in the Yeah.

Meanwhile, but. I think our faith helps us with that too. For sure. Oh, a hundred percent. Like Yeah, well, not helps us, like for me and you [00:34:00] like, gets us through, but Uhhuh. Yeah. I think that there's things to say instead to parents like us and I think, like what I was saying earlier, you can say if a parent who had a. Kid with a spinal cord injury or something, some sort of disability, similar to Allie said, if you told me I tried this, it helped Remi with blah, blah, blah. Yeah. Like it helped her lung function, or it did this, or it did that. I would be like, I'm going to try that because Rhandyl said that works or that vitamin helps her not get sick as much.

Like I've told Allie's on a drug called Tobramycin, she does two weeks on, two weeks off. Well, that is one of the main reasons she's not just chronically in the hospital anymore. And if parents ask me about that, I say, yeah, this is the drug we're on. This is why we do it, blah, blah, blah. It's helped with her hospitalizations. It may not work for you, but that is [00:35:00] what we're doing. Or whatever. Yeah. 

Rhandyl: We have kind of a similar it's a different antibiotic, but it's something we give prophylactically. Yeah. To keep her outta the hospital because that was the original pneumonia away. And tracheitis and all of that. Yeah. 

Deonna: But these are things that our doctor came up with. This isn't, yeah. I mean, they know what they're doing and you have to trust them, even though it's really hard to do that, but even in I have MS and in that world, there's certain things I've done that have helped me. And if anybody has ms, I tell them these are the, 18 pills I take at night to make me okay. I mean, I don't know the number. It's ridiculous. But I would never tell somebody an ms, vitamin regimen if I didn't have it. I mean, it's crazy. Well, yeah, so I mean, I do think just saying, I've tried this, it made this better.

Don't suggest cures. It's more of like a lot of kids have chronic pain or Sure. Things like that. Like I told one of our friends recently, have you ever, 'cause her kid has [00:36:00] chronic hip pain. Our friend Abby, I said, I take this for chronic pain, nerve pain. Maybe she could do it but ask her doctor first 'cause it can interfere with other drugs. Like Sure. But she was actively asking for people's advice. Yeah. That's the difference,

but I think it's good to tell. Parents your child's really blessed to have you, or lucky to have you. Because we work our tails off and we have, we've tried everything. I mean, we really have. And so just saying, they're so lucky to have you or blessed, because yeah most kids really are super blessed to have parents. Like us who fight, I mean, almost like verbally get into fights sometimes. Yeah. Over, oh yeah. I mean like actual fights to take care of them and get what they need. So we're all, 

Rhandyl: yeah, that's probably my, the best compliment that. Gives me the good warm fuzzies when fuzzies. Yeah, Yeah. 

Deonna: Oh yeah. You and your husband both. I mean, you do everything for [00:37:00] her and I don't think you could give her any more. It's like you're maxed out. It's tough. Oh yeah. But just when you think you're maxed out, you have to somehow give even more. And you're like, oh my gosh, I'm not gonna make it. But somehow you keep going. We're on e. Yeah, we all running eat all the time. All the time.

I think it's I like it when people, and people have said this to me a lot. Like they say stuff like, were you in the medical field before? And I'm like, no, I was not. And they just say, it's so amazing how you've learned all of these things about her. Very complicated. Care and her diagnosis and how you take care of her and you fight for her. Because, I mean,

I even, I had to have a huge personality shift. I mean, I wasn't, I mean, I was like this little, cupcakes and rainbows girl, and now I'm like, GI Jane Killer. I don't [00:38:00] know how to describe now, but it's not the same. I mean, it's like you have to get so tough and no. Yeah. Stuff and mentally and just, I don't know. It's, but I do like it when people say stuff like, wow, you are practically like a nurse now because of all the things you've had to learn and all this stuff.

Rhandyl: Yeah, I get that a lot too. That, that always makes me feel good. But yeah. I love just obviously your child's blessed to have you, but then whenever they compliment you on how much and how well you take care of your child, even through all the medical things we have to do all day.

But. Also just telling someone like, you're such a wonderful advocate for your child. That's because we take pride in that because that's what we do all day and it's hard to do all day. It's exhausting. It's part of the fight we do on daily basis and sometimes. It's just not easy 

Deonna: and there's no break. I mean, no, [00:39:00] like even when we were at camp, I would have wifi if I walked past certain spots and every time I'd walk past certain spots, you'd pull up your phone and you had six voicemails from different medical companies and you had all these text messages from people and you were just like, golly, can I not just be up here in the mountains for one week and not, nonstop, never stops. But but those are things if you kind of know the parent or something, even if you don't know the parent, I don't think it's that big of a deal Sometimes I'm not in the mood to interact with people out in public, and I'm like kind of annoyed, but.

I do think it's okay if parents say oh, you look like a great mom, and you just are like, oh, thanks. I mean, it's okay to say these things to us. It's not the end of the world. Yeah. But if you don't know the person at all. Just smile and say hi. Never, I'm, this is my opinion. Never ever give unsolicited medical advice to a random medical parent out in public because [00:40:00] No, you do not know them.

And it's weird. And the only time I would ever be okay with somebody coming up to me and giving me advice is if they had a child that looked exactly like Allie. Or something like that. Sure. We've even had people come up to us out in the parking lots and stuff. They're not giving me advice, but they wanna see inside of our van because they're, yeah. Their grandma needs it or whatever. I don't mind having those types of interactions,

but don't come up to me unless you are. One of the world's leading neuro neurosurgeons, and you're about to tell me some groundbreaking trial or study because yeah, I just don't want to hear it like. It's so weird. I don't think lavender is gonna fuse all her nerves back together. That's not how that works. But, it's, that's kind of my vibe on that one. But what you, 

Rhandyl: oh yeah, a hundred percent. No, I never ever [00:41:00] give if you don't know them from Adam. Never. I mean, that doesn't happen that often, but it never to me has happened. Yeah. Not very often, crazy, the comments on our social, what people, I mean, it's just insane. Some of these parents have been told. 

Deonna: I know from, we're gonna get into all that in future episodes. Yeah, because there's some stuff I was like, if I didn't read that, I wouldn't believe it. But

so just to wrap things up for this episode I think that you, as somebody who does not have a disabled child, can just trust that most parents are literally doing. Everything that they can to help their kid. I mean, that is all me and Rhandyl and all these other parents in this raising disabled community. Like we wake up thinking about ways to make their life better and we go to bed thinking of ways we could have done it better. I mean, we are so hard on ourselves. And I actually am [00:42:00] trying to work on that because it's just, I'm so hard on myself all the time. But, that's all we think about Yeah's

Rhandyl: so much there. Guilt that comes. Yeah. There's so much guilt that revolves around what we could have done better. And we're just trying to make sure that they're living life to the fullest and so, 

Deonna: we've accepted it whether everyone else has or not. And I do think, and we also know way more about it. There's times, I'm talking to even family members and they'll say like, why aren't you doing this? I'm like, well we can't because of X, Y, and Z. Yeah. And they're like, oh, I had no idea. And it's nothing that bad. It's just like they don't know 'cause they haven't been in the rooms and the hospitals with us. We just know more, but yeah, we're living it. Yeah, it's, we're a little mini doctors and we are doing our best, but

but yeah I think that most of the time it comes from a good place. But hopefully this kind of gives people an insight into how these types of unsolicited medical advice can make us [00:43:00] feel. Because usually we aren't going to take it seriously unless it's coming from a. Person with experience in that field or medical professional.

So, yeah, just take this advice and next time interact with somebody, maybe you can remember some of the things we said to say instead. And so, yeah. Don't say this was a good. This was a fun one and if you wanna listen to any of our other episodes, they're all labeled dumb things people say and they're pretty fun. We try to have a good time with it and not take it too seriously, but at the same time, share with you guys how we feel. So, this was a fun one and we will see you next time.

Rhandyl: Don't say dumb things. 

**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.