One Year Anniversary of Raising Disabled

In this episode, we look back at our favorite moments from the first year of Raising Disabled.  Thank you so much to every single person who has listened!

Glass Ouse device mentioned in the show linked here.

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Transcript

Rhandyl: Hey guys, today we are going to discuss the last couple of weeks to start out. And I was just telling Deonna before we started recording, I can't think of anything spectacular at all that's happened in the last few weeks, which is actually, that's a good thing. Really needed that chill. 

Deonna: Yeah, sometimes nothing exciting. Yeah, 

Rhandyl: I think we really needed that, but what have you guys been up to? 

Deonna: I feel like ours is the opposite. We've had a lot going on. Cole had his track meet for sixth grade last week, and I just did not know how that was gonna go. He goes to a huge school here in Lubbock and so he just kept telling me, I'm gonna do so good at all my events. And I'm like, okay, whatever and 'cause I was not athletic, so it's really hard for me to just relate to this in any way. But he won like all his running events, his hurdling events, he got like second and third in jumping events. I'm just like, what is happening? The whole day we were just, I don't know. It was really fun. We were just celebrating him so much and it's really fun. I need to share some videos of that because 

Rhandyl: I was going to say, I want to see videos. I asked him the other day when we saw him about it and I could tell he was definitely super proud. 

Deonna: Oh yeah. Really excited. He really wants people to bring it up every time they see him. You know but yeah, he's already planning for next year, like already trying to run and all this stuff. Yeah. He likes it, but it's a fun thing for him to do. But it's Spring so I was outside in my flower beds. In Texas, it's just such a hard thing to keep stuff alive I feel like. I have like these rock flower beds. Yeah. And they're great, but I was Googling plants that won't die in Texas and which, Texas is so huge. We have so many different types of weather and stuff, like it's humid in some places, but here it's not. It's just bone dry desert feeling. And I planted a whole bunch of stuff this weekend that is supposed to not die. So I'm hoping, I'm really good at doing indoor plants, but outdoor plants are not. 

Rhandyl: I've discovered The last few years, potted plants are the way to go here. And I actually potted some perennials last year and they came back up in my pots. And I just I had to add some soil because they were way down in the pot because they had.. because of the wind wind? well, and so I just lifted them up and they're thriving. But I mean anything that I have planted in the actual ground has to be a perennial but yeah…

Deonna: I’m the same way. Like we have some people in our neighborhood who completely redo their beds every season. I'm like, what? How expensive? Obviously aren't living our life because no, I just..

Rhandyl: I love my plants, but it's definitely an expensive hobby and you have to babysit them a lot here. It's not like we get, like you said, we don't have humidity. We literally have to water them, soak them daily. It's a lot. 

Deonna: Every day. Yeah. Yeah. I have a lot of cactus. I had cactus in El Paso. And then when we moved during the whole crazy alley in the hospital thing, I ripped off several pieces and I told my mom, you have to babysit this for me. It's you know, we’re in the process of moving and everything. So I have those exact same paddles now. That's good. And so it's a cool, yeah, it's cool. But yeah, so we did that. So I was so sore. I was just on my hands and knees in the rock digging and I'm not in great shape. So it would just, it was so bad. Like I just now am getting to where I can like get down on the floor and get back up without cringing. My son's making fun of me so bad. And I'm like, someday you'll be old like me and gardening will be a full contact sport for you. So, I don't know what to tell you, it happens.

But yeah, the most exciting thing this week is Allie got this thing. It's called a GlassOuse and that's like mouse without the M and it is a really cool thing. It comes as glasses or there's different ways you can attach it to your head, but it's for people who have no, or very limited arm control or hand control. And there's a million different options and switches and things like that. Like Allie uses a bite switch, but they also have typical switches that we all have become used to seeing, like the buttons.

But yeah, she can control an iPad and a phone with it. We haven't figured out the TV part yet, but you can control a TV with it because that's something she's obviously missed being able to do is like change a channel. And but yeah, she's been playing iPad 24/7 since she got it. And so it's cool. So if your kids have any iPad games they like, you guys need to let us know because… 

Rhandyl: What did she say about when she started using it?

Deonna: Oh, she said it was the best day of her life. And it probably was because you know, at school, everyone's always talking about all these apps they play and she's just sitting there like cool I can't do any of that. And so that makes me so happy. Now she can control a computer and an Ipad and phone. 

Rhandyl: ‘cause they use iPads at school, right? 

Deonna: Next year they bought her a computer, but yeah, there were lots of times they were like, okay, get on this app and she would have to do something different or whatever and so it's really nice. Like it's a cool company GlassOuse and so we live in Texas and I don't know if this is the same in every state, but because she's on Medicaid for her injury, she gets is it $4,000 or $5,000 a year for adaptive aids in Texas? I can't remember. 

Rhandyl: It's in between there. It's like $4500 or something. 

Deonna: It's somewhere around there. Yeah. Yeah. And so we kind of forgot about that, but that's what we used. And so it's nice. So if you live in Texas and you're on Medicaid, that is an option for you. If you don't live in Texas, find out because there probably is just money that's going to waste, you know it happens. But so that's been fun and she's really excited about that, but you'll have to let us know on Instagram if you have any apps that you got your kids like.

Rhandyl: So I guess the one thing that is new for the last couple weeks is Barrett, my son, he started swim this week. And we've been going to the same lady since he was an infant like ISR infant rescue. He learned to turn over and float and do all the baby survival stuff, and now it's more swimming and so yeah that's been fun to watch.

Deonna: Oh but y’all have a pool so he needs to know.

Rhandyl: Yeah, It’s necessary. No matter how many locks and fences and whatever I'm like, we are doing this as long as we have to. So my parents sometimes would take him when he was an infant, if I was out of town, if they were in town and they were like, I don't know how you do this every day. Yeah, and I'm like, and I think at one time made the comment-  I've literally almost seen Remi die so many times and I'm, I guess I'm choosing to do this to my son to0, No but yeah, he gets so nervous before he gets in. You can tell he's trying to be so brave and then he just loses it when he gets in there, but he does great he's doing what he's supposed to do.

But bless his heart. I'm hoping after a few weeks he's happy. Like last summer I thought oh my gosh.. Because we did it in the beginning of the summer, like we're starting right now, and then once our pool got ready and we were getting in the pool a lot at the house. I was like, Oh my gosh, he's gonna just be traumatized all summer. But after a couple of weeks, he was jumping into us and it was fine. So I'm hoping this summer will be even better and that and that he a little fish by the end of it, but who knows.

Deonna: I bet he will be, he seems like he would be. I do think those programs are cool. Like Cole just took regular swimming lessons. He should have done it earlier, but we just messed around and didn't do it. But I think those are so cool. Our nurse used to work in the ICU and drownings are like their number one thing, I think that people come in with all summer. It's good when kids, there's only so much you can do, but like it's good when kids at least know the basics when they're tiny and that in that kind of dangerous stage. So that's cool that he's doing that. Yeah. It would be hard to watch them do it though, I feel like. 

Rhandyl: Especially at the end when you have to put them in full winter snow gear and boots. That's crazy. And then it's just amazing to watch them flip over and just float there. And then you try to pull them out of the pool with all that stuff on and they weigh like 60 pounds and you're like, Oh my gosh, I don't know how you just did that, but it's pretty cool. 

Deonna: That is crazy. You're like, we don't live somewhere where people are walking on icy lakes. Like what's happening? Most people, have their clothes on when they're in a situation like that. Yeah. Oh my gosh. That would be so scary. I did not go through that. So I have seen my kids almost die multiple times, but not by choice. Not by choice.

Yeah, that's basically what we've been up to. And so this episode is fun. We have been doing this for a year and so let's just get right into it. 

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Deonna: Hey y’all, welcome back to Raising Disabled. So we realized the other day that it has been an entire year since we've started this thing. And I think the technical first day that we posted any episodes was May 5th. And so that was on Sunday, this past Sunday, but it just blows my mind that it's been a whole year because it doesn't feel like we've been doing this very long, but it also feels like we've been doing this for forever. I don't know. 

Rhandyl: Yeah, for sure. And it is wild to think that it's already been a year. And I've told a few people the past week it's been a year and they're like, wait, what? So, I think we're not the only ones, but we've learned a lot along this year. Oh my gosh. When it comes to editing and everything that goes into it, there's so much that goes into it that we, of course, when we first decided, hey, we're going to do a podcast. We never knew how complicated it can actually be, and Oh my gosh. Just the beginning of it. Yeah. Oh yeah. And we're still a two man team, so 

Deonna: We are. And probably will stay that way for a very long time because Yes. Yes. It's expensive to hire somebody. It's been so much fun, and I personally, you've been doing this whole disability thing longer than me, but I've just learned so much about so many different types of disabilities. I felt like my kid was the only person in the world who was disabled, and that our family was this only family who was hurting, or stressed, or sad, or all the different negative emotions, and so it was amazing to get to meet all these different people and have that community, even just on Instagram alone. But just so many people who all of a sudden, I'm just, my eyes have just been opened up to so many different situations and for the better, for sure. 

Rhandyl: Oh yeah, yeah. It's been awesome. And our friendship, um, Oh yeah, I know. Our friendship has gotten so much stronger. Obviously, we have to make decisions together regularly and hang out and so it's been fun.

Deonna: We barely knew each other. Now our families know each other. It’s been super fun. We really didn't know each other that well when we started. And it's so funny. I text you more than anyone. If you, for reals, like if you were to pull up my phone bill, it'd be like, who's Rhandyl? What is going on? Because it's just like constantly, because we are basically having to talk to each other all day, every day. This is a big commitment. Like people, 

Rhandyl: we're business partners but it's fun. And I'm glad that we're doing it together for sure. 

Deonna: I know. Oh, there's no way I could do this without somebody. Rhandyl's always did you get this done? I'm like, no if it wasn't for Rhandyl, I would basically never get anything done and we would not put out episodes as frequently as we do. So I'm proud of us. We made it past the sixth, I think like most podcasts fail after six episodes or maybe it's even three or four. And so we are 20 something in and a whole year in and still we haven't even scratched the surface of our ideas. That's exciting. 

Today, what we're basically going to do is we're going to just go back through and pick some of these favorite moments from the last year, our first year.And we are going to actually tell you guys which episode we're about to talk about. And then we'll play a very short clip from that. And then just give you guys an idea of what that episode was like. So if you're new to us and you're listening to this today. You can listen to what we have talked about in the past and possibly go back and listen to episodes that sound good to you or that you missed or..we’re just going down memory lane today and so…

Rhandyl: it was really fun I wanted to relive all the episodes. 

Deonna: Some of the first ones were cringy. I was like laughing because there's some stuff that I did or said or oh my gosh..

Rhandyl: Yeah, me too. Our editing has gotten so much better. 

Deonna: Yeah, we have made improvements. But anyways, so I'm going to let you go first we're just going to take turns going back and forth 

Rhandyl: yeah, so the first thing we're gonna talk about is my story, It's titled Rhandyl's story and it just goes into detail about my daughter and the whole process of long hospitalization and bringing her home all the way to fast forward six to seven years and how life is now. And if you want to hear more, just go back to the full story so you can learn more about us and our family.

“Once you actually get home and you're quote unquote on your own there's not a button you can push and the whole medical team is right at the bedside. So I think that, I have always, even previously to my raising disabled part of my life, have been one to take it all and I can do this, I'm not needy. But I was definitely not aware. I've never had anxiety and isolation depression like I experienced the first six months to a year after bringing Remi home. It was probably the hardest time in my life. It was a lot harder than being in the hospital that whole time. I wish, you know, looking back on, I would've not been too proud ‘cause honestly, my pride held me back from a lot of self-care, ‘cause I can do this. I'm strong enough. 

I was very bitter in the beginning. No one understands what I'm going through right now. And so I couldn't relate to anyone. I just felt like no one understood where I was and what I was going through. Relationships were really hard and continued to be really hard, because I thought of my life as, life before Remi and life after Remi. 

I feel like we can go on and on about how it's different and the negatives. Yeah. But my favorite things to talk about are the blessings that I've received since Remi's birth and raising disabled. And number one is, my faith has flourished. And I feel like the majority of the time, these traumatic instances can go one way or the other. It can help flourish your faith or you can lose your faith. Yeah. And for me, I thank God that my faith flourished in this experience. So yeah, the birth of Remi definitely brought me closer to Jesus. That's number one. And just realizing that there is still so much good in this world, if there's one thing I've learned through this experience is take one day at a time because the future is definitely, unexpected and not guaranteed. And not guaranteed. Yeah. If there's anything I've learned is live in the present and don't sweat the small stuff because it's the present that's the most important and there's so much good that's come from raising disabled.” 

Deonna: Yeah, I think that listening to your story was super important for me especially because I knew what had happened and I had talked to you about this several times, but just when you really go back and remember the full story, you remember all these details. Even today I was looking at some old pictures of our story and you just forget like all the details. Crap that you've survived and it's amazing, but I do remember the part where you were saying coming home and how scary that was. And I just, it's so funny cause I do remember looking forward to coming home. And then when you got home and you were like, oh crap, I have to take care of my kids. I don't know what I'm going to do. Is it weird listening to that story again, or is it fun? 

Rhandyl: No, I don't like it. 

Deonna: I don't. I know. Yeah. We're about to talk about mine next and mine was the same. I listened back to parts of it and I was just flipping through it. And I could just feel my heart racing from just thinking back to these horrible times that people didn't really know how bad it actually was. And I'm going to share with you guys a little clip from my episode. 

“There's been so many good things that have happened and even Allie will admit that, like she, she'll say that there's been good that's came out of this in and it's her own body, but. Like you said, last time don't sweat the small stuff. I very rarely care about anything anymore, and that's a good and a bad thing. There's definitely I care about people still, but. I just don't, I used to sweat the small stuff. I used to care about appearances and just all these things.

And now I should probably care a little bit more about like getting dressed every once in a while and stuff. But I just, I don't care about anything. Like I definitely appreciate the little things that I just never even noticed before. There's things that happen that I think are great that I would've missed,” 

Rhandyl: Yeah, and I think one thing that I take out of this is we both said one of our biggest things is not to sweat the small stuff and, It's definitely something that we both acquired through this life because that part of our life, like caring about the little dumb things is gone. And I think that's a blessing, 

Deonna:Yeah, I think it is good to look back on the early years every once in a while, even though it's really hard because it shows you how far you've come and just, today I was watching one of these little videos where we had heard her voice for the first time in six weeks. And I always obviously took for granted the fact that she could talk to us, everybody does. But it was just seeing those like early videos and stuff from when she first got her trach, it's so hard, but it's also really cool too, to see how far she's came and how far we've come as parents. 

So the next thing that we talked about that we're talking about was our routines and those are different than our initial stories, because that's just what we do day to day. And we kind of wanted you guys to know where we were coming from so that you would see our point of view, basically on what we live with. And so we went through Allie's routine and Remi's routine and just went through, from the moment we wake up until the next morning when we're doing it all over again, because our work doesn't stop in the nighttime, like some normal parents lives do. We're gonna just share mine first, what a little part of that episode was.

“That's what a typical day is for us and that's on an easy day.If she's sick, like you said, there's so much more that goes into this, and the stress level is at...Stress level 10 because you don't know, Oh shoot, am I about to go in the hospital over this? But that's what a typical day is in the life of a very high level spinal cord injury. It's a lot harder than just having a kid in a wheelchair who doesn't move. It's very complicated.”

Rhandyl: Yeah, and listening back, you would think that, both of our girls are trach and ventilator dependent but their routines are not very similar. They are but they're not there's so many things that that we do differently and so it was very interesting to listen to both. So if you haven't listened, they're eye opening to what we do on a day to day basis and like we said these are just our normal day to day things. This is when everybody's happy and healthy. 

Deonna: It's so funny to think about when people like people don't have that insight into our life. That's why we did this. People just see my daughter with their wheelchair and think, wow, that's hard. Her kids in a wheelchair. That's the tip of the iceberg. They don't know what's going on under the water. It's just so much more difficult for her and for us and for our son, who is going through this in a different way, but he's in our house and experiencing it. It's good to listen to these routine ones and just get a little glimpse into what we're experiencing. 

Rhandyl: “I think the first time you do any of this you realize okay, organization is key. You have to be organized. Yeah, everything has to have its place, every thing has to have its time. Not only because your kid's life depends on it, but your sanity depends on it. Yeah, organization is, it's the only way to keep up with our daily routine for sure.

 It’s a lot and that's just her routine, that doesn't include our own routine, our other kids routine our work life, something’s wrong, what so and so said to you at the store that's still bothering you or whatever.

Deonna: That's just what you do with her. That's it. Yeah. Yeah. 

Rhandyl: Yeah. But thank God for nurses because, I mean, just like Remi and Allie, they couldn't live the life and be included in things like school and extracurriculars if it weren't for them because there's no way we could do it all. And so when we don't have them, we, we notice. Yeah.

Deonna: We notice. We notice. Thanks for telling us all this stuff. It's a vulnerable thing to share what you do with your kid inside your house, because that's not something we all do all the time. But I think it is good for people to hear what we're doing and understand that it's not just what they see out at school or church that is hard. It's all the behind the scenes leading up to those moments. That is also really hard too.”

Yeah. What I took away from the part that you shared was just the adjustment of having the nurses in the house all the time and just being able to tell people you need help and that. You can't do a lot of this on your own anymore and I think that was an important part of that because like both of us are super, super independent, stubborn people, and so it's hard for people like us, especially to, and I think it was probably really hard for our husbands to to all of a sudden be like, Oh, I need help. I'm like supposed to be this man and now I need all this help. It's hard, like really hard. And so that was a big takeaway for me from that. 

One of the other episodes that I really enjoyed and we both have some very strange stories that you can't explain other than that God was taking care of us in this way that we did not understand and sometimes weren't super happy about. And so let's listen to a little clip from one of those episodes, Divine Interventions. 

“there's so many times when God is like, I'm gonna do this thing, you're not gonna understand it for a year or, Five years, 10 years. Maybe ever. I don't know. But it's what's gonna be the right thing for you or for your kid.” 

Rhandyl: Yeah, and a lot of these stories that we tell in that episode, there's, so many things that we may never understand or realize years down the road, oh, that's why that happened then. And it's just wild to think back on these particular moments. 

And another episode Deonna and I have some crazy stories from our daughter's hospital stays. The episode is called beautiful disasters and we both had some pretty crazy national and state disasters that happened while our daughters were hospitalized. And then other similar things that happened as well which if you listen to this episode, you'll know what we're talking about. So here's a little clip from beautiful disasters. 

“We were a year into this long hospitalization when this happened and making it through a national disaster, losing a vehicle, like it was cake. . After things that we had witnessed on a daily basis that whole year, those huge things that would have rocked our world, before, they were just laughable, like we said.

But I really, I thank God for the perspective that I have now, and I see more clearly the priorities in life. And I think a lot of people see us caregivers of disabled children as burdened, maybe? But for me, it's... Yeah, I think they do. Yeah but honestly, for me, so many earthly burdens that I had before all of this they've been unloaded.

 Not to say that this perspective makes my life easier, because my life is hard Yeah. But, finding joy in the small things, and not sweating the small things, all at the same time, I think it helps give me grace honestly, just, the perspective that we have. At least I can say for myself is, I think it's a blessing for sure.

Deonna: God can give you this amazing clarity in the midst of these literal storms, or it can be in your life. It doesn't have to be an actual storm like what happened to us, but God can give you this amazing clarity where you can, when you can just quit worrying and obsessing over what the world cares about.

And for us, that's been this really freeing thing. God can take a hurricane, or a loss of a car, or a fire, or a freeze, and he can give you this peace, and something I've noticed, and if you're a parent of a disabled kid, the world is always watching you, and that's hard sometimes, because you feel like you're just in a fishbowl, and everybody's watching all the time, but I think you can use that as an opportunity to use that for good.” 

Yeah, I was talking to Dane about this episode today because we are preparing to go back to Houston for some stuff, nothing emergency or anything, but we're going to be there from anywhere from a week to three weeks. And it was funny because when I was talking to the place where we're gonna stay I'm asking them, where's my car gonna be parked? Is there gonna be security? They're probably like what is your deal, you psycho? But I was like, I was afraid I'm not I am I can't lose another car down there, like I can not lose another car down there. And I told Dane to I said I want to get in and out before hurricane season, like I am not messing with hurricanes no, thank you.

So it's funny. We both had some very crazy stories. Sometimes I think about these and I'm just like, how did we have this happen? It's like stress on top of stress. It was such a nightmare. But like I said, these types of things even made us realize all of our stuff doesn't matter. Our cars don't matter. Stuff that you feel is very important to you, like a huge vehicle, you're like, Oh, I can get another one. What do you do? 

Rhandyl: Gone in the blink of an eye. Yep. Yep. 

Deonna: For sure. So another episode that is actually going to be coming in handy now is Summer ideas. So we just talked about every single summer idea we could think of for disabled kids. And you guys actually gave us a bunch of ideas for this one. And I need to re-listen to this because it's just around the corner. But I, the quote that I picked, I'm going to share it right now and then we'll talk about it in a second. 

“You as a disabled parent, and I've lived on both sides of this, but I. You don't need to feel like you need to keep up with the Joneses and the Joneses are families with non-disabled kids.” 

The thing I remember the most is just, our summers are so different. It's crazy. The kids were at home a lot with me before and that's not different, but just, you're still having all the same people coming in the house, like nurses, therapists, and it is very difficult. You see all of those non-disabled families doing a million things and sometimes it, like the little jealousy bug can creep in or, things like that.

Like this summer, my son has a lot going on, like camps and stuff, but I do think it's important to just know yourself. If you compare yourself to other people, stay off of social media because I don't know how healthy that is in the summer, watching everybody go. And if you do go. It's great, but it's important. 

Rhandyl: Yeah I kind of dread summer for Remi because she loves school so much and it throws kids off routine. A lot of disabled kids. That's the worst part of it. Everything. Yeah, that’s literally the worst part of it is the routine. Yeah. 

Deonna: Our routine is crazy like it gets totally thrown off, but Allie's okay with it. But some kids are not okay with that. So summer ideas, if you need them, we've got them. 

Another episode that we did that was.. I don't know, maybe you shouldn't listen to it right before summer vacation if you have a trach/vent kid, because we basically share some of our really close call, scary moments on vacation. Me and Rhandyl both just go. We don't quit going on trips and things, even though we have very complicated packing processes and all the things, but so don't listen to this one, maybe right before a trip, but just listen to it on the way home when everything's fine and you're good to go. Like when you're literally an hour away from home, you can listen to this, 

Rhandyl: But we still go so.. 

Deonna: We still go. Yeah. Even after all these things, but we'll share a little clip from what we've learned from this. 

“I've said this and this is one of my mantras But I've always been like there's no point in keeping our kids alive if you're not gonna live it's really a difficult thing because every time you go outside of that Comfort zone, you, there's a little risk there.

You know it, like it's, it is the way it is, but if you want to have any. I don't know, like experience, yeah it's worth risking it a little bit, but yeah” 

Rhandyl: Yeah. If you listen to the Vacation Mishaps, the full episode obviously we go over some crazy stuff that has happened to us on our road trips and trips, but we don't let that hold us back. So it's definitely made us better travelers and more on high alert more obviously than we were before all these scary things happened. 

But, this other mom, Christy Cook with Accessible Adventures she has a lot of good advice for road tripping and mountain trips and national parks and stuff. She had some wonderful ideas and all sorts of great things that she shares. And I learned a lot from her episode, just on vacation ideas and things that are accessible and I have a summer vacation list of things I want to do the next few summers because of this episode. Here's a little clip from Accessible Adventures with Kristy Cook. 

Kristy: “We got Robbie's camper through Make A Wish. And I'm like, great, where do we go? And then we started to realize, I don't know, if we travel, how to find things that are accessible. So I got on my personal Instagram and people were making reels, right? It's during COVID. It's when Instagram first started popping off and stuff.

And I was like let me follow all these like full time RV families cause they travel all over, they’ve been everywhere. And I just started messaging random people or leaving comments like, hey, did you see anything that looks stroller or wheelchair friendly in that area? I would love to go there.

And we went on our first trip and it was this big road trip, and it took us almost two weeks, and we saw three different national parks and we got home and I was like, man, it took me months to plan this. And not everyone has a type A personality like that to just sit up at night and plan out everything in that way. And I thought, man, what a shame. So I started accessible adventures and then I was like we'll just share some pictures. And then, I took a video of my husband, he’s carrying our son on his back in his kinder pack, and he was walking in front of a waterfall. And I posted it and was like, ‘this is my love language. No complaints, no hesitations. He never gets left behind. My husband's always there.’ 

And it went out to 10 million people on accident, and I was like. I guess we could actually do this and maybe we could make a difference and build a community because we can't be the only ones that still want to see things, even though our kids are out here.”

Deonna: And it's not always going to be picture perfect. Even when you plan, there's going to be things you thought you were going to be able to do that may not work out exactly, it's like any type of travel, but you can't just show up somewhere and expect the red carpet to be rolled out for you. That's not what this life is like for us. You have to go out and plan it and fight for it, which, is hard sometimes, but 

Rhandyl: And just like she said earlier, you plan it and you get there and it doesn't work out. But I feel like us families that are raising disabled children we know that's the life we live now.

Deonna: Yeah, I really enjoyed her episode. I've used several of her tips already on our last trip that we went on. And it just makes you realize that there are options, like a wheelchair. In my mind, when Allie got in a wheelchair, it was like, okay going outside's out. There's no going to these huge parks is out. But she explains in detail in this episode, how you do it and where you can go and all kinds of stuff, and her website's really great. And so if you are wanting to come out West, especially where we are and check out this part of the country, she really lays it out. 

Rhandyl: So next we're going to go through some highlights of caregivers that we have interviewed of what they said about how their lives are. And all these moms were very inspiring. The first one was Amber raising Henry and, I've known Amber since we were children. And so this one was very near and dear to my heart, and she is such a wonderful mom. And Henry is the cutest little thing ever. So here's a little clip from Amber Raising Henry. 

Amber: "Learning to be resilient and flexible and not having expectations are the same expectations of what life is gonna look like.

Yeah. Because, yeah, just because something is different doesn't make it bad. Yeah. Yeah. And that doesn't mean you're any less than Yeah. And it doesn't make, it doesn't make them less than, it just makes it different. Yeah. And that's something I wish people knew that just because my child looks differently, just because they, do things differently doesn't mean they're less than. We have expectations, And it's not always what you expect. No. And that's hard. That's hard. But it doesn't mean it can't be beautiful. Yeah, no. And it doesn't mean that it's not gonna have joy and it does. And finding joy in those moments. And just because you know our life doesn't look like other peoples, doesn't mean it's any less joyful.

 But just because this thing has happened that I didn't want to happen, that has happened, does not mean that God's not gonna use it for good because he is and he is gonna use it for good."

Deonna: Yeah her saying “just because something is different doesn't make it bad.” That quote I mean of all the things anyone has said on this the whole time to me, that one is the one I just remember it, like it really stuck out to me because in my mind, it felt so bad for so long. Just like looking at Allie and people still, people don't treat our kids great sometimes, but it doesn't matter what everybody else thinks.

We don't have to feel like this is a bad thing, even though it's hard. It can be this amazing life still. And when she said that it was amazing. And also I have a little side note about her. So the other day I was at a plant nursery and I saw her son and her mother in law was there and he was the cutest thing ever.

I had never met him and it was like, I felt like I knew him because we talked about him with her, but he was so cute. He was telling me all about his chickens and how they're teenagers now, and I would just like made me laugh. I'm like, what? But he was so cute. He said “I'll start bringing you eggs.” I was like, I will take that. Seriously. Eggs are so expensive. But he's so cute and I mean, he is just such a sweet kid, and they're doing a good job with him. You can tell. He's just so happy and it's amazing, but yeah, I just, that quote really did stick out to me too. I know, I use it all the time.I know we need to make a printable of that because it's very true. 

The next person that we talked to was Danielle Raising Barron. So the way you can tell on our podcast, if we're talking to a caregiver, is it's going to say the parent raising and then the kids. So that'll be an easy way for you to be able to tell, but we talked to her and you knew her from working out, right? She was at your gym. 

Rhandyl: Yeah, she worked at the gym. Yeah. And so her I knew her before her pregnancy.

Deonna: We didn't say earlier, but Henry has limb differences that we were talking about just a minute ago. That's his diagnosis, but Barron has lissencephaly among other things, right? So that's his diagnosis, but we talked to her and so we're going to listen just for a second to a clip from that episode. 

Danielle: “And I made just like a mental note to myself I'm just going to let Baron show us what he's going to do and what he's capable of, and I didn't have any expectations, so anything that he did was positive, and I wasn't looking at the things that he wasn't doing, so I, that's my mindset.” 

Rhandyl: And I just love the perspective she had so early on that she didn't have any expectations she was just going to let him do what he's going to do and let him run the show. And man anybody can take a note out of that book right there, if you can take anything out of this life, there's no guidebook or recipe for how things are gonna turn out 

Deonna: so the next one we want to talk about is Deanna Raising Joy. And Deanna is our, we've decided she's just our little resident licensed counselor. So she's been on more than once. But she is the mom of a disabled kid, so this episode was called Deanna Raising Joy and so we'll just listen to a clip from that right now. 

Deanna: “My husband's father had passed away the day before we got the call for her, which is just a good God story in between all of that. And so we were upset about Aaron's dad dying and then we got the call for Joy and. They said, we know, like Our agency was like, we know that y'all are in the middle of all this grief stuff. And she was like, so take your time, don't feel like, but the lady said it, I just really felt like the Holy spirit told me to call you for her.Wow. And then you're like, okay, we better listen. And so you're like, are you sure? You're like, really? Because that sounds like a lot. Yeah, it was interesting. We said, send us the stuff.”

Rhandyl: Yeah, Joy she had severe shaken baby syndrome. and Deanna was the foster mom to her, and then eventually adopted, which you can hear the whole story. It's a God story for sure. They were going through this huge loss and the thought of taking on something this big at that time in their life, it was really hard, but then it ended up being so awesome.

Deonna: So the next thing we're going into is we have a series called dumb things people say. And this was just an idea we had because we've had so many different people say funny things to us. Pretty much on a daily basis, somebody says something weird to us or does something weird and so this is just like a funny, like it's supposed to be funny and fun, but it is meant to be educational. Like we want people to hear what we're saying that are outside of this community and take it in and take this advice because some of these things can actually be really hurtful. And we're gonna go into the first one that we did was part one, and it was the phrase everything happens for a reason. We're gonna listen to a clip from that one now. 

Rhandyl: "Jana says that God says he'll work all things for our good. Not happy clapping good, but real good, the nearness of God. And she said she put in quotes Psalms 73, the glory of God, the good of those that love him. And that includes the hard, broken, painful, and sad things too. It's not wasted. And I love that. I just, I love that it's not wasted. We can use it for good. If we choose to, and that's the thing that's the hard part I think, sometimes is having to wake up every day, decide, choosing. You're gonna do that?And every day's not like that.

Deonna: Oh, no. I'm a that's be real. Mess half the time., Yeah, no, a hundred percent. I'm very unins inspirational quite a bit of the time. But , even if we don't understand why something's happening, it doesn't mean that God doesn't have this plan and purpose for our kids' lives and for our lives." 

Rhandyl: Yeah, I really love her happy clappy good compared to the real good. It definitely put it into perspective for sure. But the next one we talked about was part two and it's the phrase you're so strong. 

“My response to most people when they tell me that I'm so strong is that, any genuine human or any parent that was going through the situation would do the same thing. But yeah. 

Deonna: And parents who say this to us, they would do the same things. They would, yes. They don't think they can do it because they don't feel as strong as us, but push comes to shove. They would do the same stuff, and they would. Be just as strong. They can do it, but yeah I remember. 

Rhandyl: It wasn't a fun journey getting to be this strong,

Deonna: Raising disabled kids takes grit and this just different kind of strength. And it's developing and working a muscle that you didn't know you would need. And you may not feel strong enough at the beginning of a diagnosis or an injury or whatever, but you'll get there and you do have to develop a really thick skin, like tough skin, you have to let stuff roll off. It totally changes your personality and even people who knew me before and after, like I'm way meaner, I'm way more honest and I'm not as scared to hurt everybody's feelings as I was. And I don't love all the new. Parts of me, but it's what I have to become to survive this because it's hard.”

This phrase had a lot of feedback from our listeners. But I understand why this could upset somebody it is interesting one because it seems incredibly harmless, like we were saying. But I do think it is good to listen to that because most parents would do the same thing as us, like we were saying. I'm definitely stronger than I was. I feel a lot stronger and tougher, but a lot of parents actually don't feel that way. They feel very fragile. And so when you tell them, they're strong, it can be tough. And so that was a good one. 

Rhandyl: A lot of our feedback was split on this one for sure. Yeah. This one was mixed. Yeah, and on the others, I feel like it was more one-sided for sure. The next one, though. 

Deonna: Oh my gosh. 

Rhandyl: Yeah, part three 

Deonna: We, part three was “God gives special kids to special people”, and this one, people were so mad. I could not believe how mad people are getting that people say this. So this is by far so far the most angry people have gotten and dramatic about this one. So let's listen to a little clip from that. 

Rhandyl: “It would be like telling a parent, God gives violent kids to violent parents, or God makes or God gives successful kids to successful parents. But he does acknowledge that he says, I suppose that the intent behind it is to say God is specially equipped parents with special needs to care for these children. But then did He? Because that was an additional pressure on parents, like somehow we have to find this secret hidden ability within us. Yeah, and so it does put additional pressure on us as parents of disabled kids. But Chad also said in this situation we're stuck with that common but unavoidable dilemma of suffering and burden bearing in this Christian life. We just don't always know why things happen and God didn't tell us. He does promise to be with us and to enable us, to guide us, and most importantly, to forgive us when we fail."  

Yeah, and I just love this quote. That was from my uncle, Chad Bird. He is a Bible scholar, and his perspective on this hit the feels and it was, it pinpointed why this is such a triggering phrase. So tune in, go back, listen. 

Deonna: I think that was a fun one though. I liked that one a lot. It was fun. 

Rhandyl: The next couple that we're going to talk about are about the siblings of disabled children, so the typical siblings.

Deonna: Yeah. We talked to Stephanie Dotson and she grew up with a disabled sibling who passed away actually, but she tells us all the things about what that felt like growing up and this was in the 90s, but I'm sure a lot of the basic feelings are gonna be the same now. It's the same thing just different decade. And so here's a little clip from her episode

“I've talked to my son about this a lot, but did you ever feel neglected or invisible because of your sister's disability and just the attention that she required every day?

Stephanie: Yeah I don't at all think it was anything that my parents intentionally did or said or didn't do. Oh yeah, for sure. I think it was just from a very young age, I became really independent I could pretty much take care of myself, and for the most part, I kinda took on the role of a third caretaker for her.

Yeah. Yeah. And just suppressed my own needs I didn't want to get in trouble or step out of line or Do anything that was gonna cause more stress than they already had. Yeah, that was just something in my personality I think that I took on but I mean It's impossible to not notice how much effort and time and energy your special needs sibling is taking. And my parents tried really hard and they didn't miss a single basketball game of mine or anything like that.” 

Rhandyl: Yeah, this episode, Stephanie's episode. I definitely shed a few tears during that. It was a great one and it was emotional. But it was something that all caregivers need to hear. No matter how old your typical children are, your disabled children are it's one to definitely listen to. And we also talked to Katie Taylor with Child Life on Call. She's a child life specialist and we talked to her about supporting the siblings of disabled children and she talks about how child life specialists guide caregivers and the typical siblings through getting home from the hospital with their disabled sibling and just living the day to day life. and how to help us as caregivers explain things or prepare them in ways that we might not have thought of before. So here is a clip from that episode. 

Katie: “I don't know how you guys feel but I really like to encourage curiosity about things instead of just labeling and walking away and not talking about it. So bringing up the thing and I call it run to the danger. That's what my dad calls anything that you don't know, just run to the danger and try to find out and figure it out. And I just think it's such a good practice or that's funny.

It's really staying curious about it. What if somebody else notices, what would you say? And so just having that complex preparation, preparing for when, or if that does happen so that when, or if it does, they have a response and the more they practice it, the more confident they feel.

Rhandyl: Are there different things that you guys do whenever the child is getting ready to go home tools that you use for siblings to prepare for discharge out of the hospital, into their home environment with everybody in the family and 

Katie: yeah, I think preparing them for what it will be like at home because likely after discharge. It doesn't mean you probably go back and see the doctor pretty frequently at first for any kind of updates or therapies or whatever that would look like. So having the plan with when we go to therapy, maybe grandma or grandpa is going to pick you up from school and thinking about the logistical impact that it's going to have on the sibling is a good preparation tool.”

Deonna: I think this episode is really important because hopefully this part of our journey is over. But I do think that it's a good idea to use her or to use the Child Life Specialist at the hospital to try to help you navigate that because they have a lot of experience and most of us don't have counseling experience.

We don't know what we're going to say to our kids. We don't know. It's just uncharted territory. And talking to her was really great because it makes you realize you have that resource that you may not have thought you had. And so most people, unless you've been in the hospital for more than a day or so, you don't know what child life even is.

And so it was a good episode to even teach you what it is. But the next one that we did, and this was a very recent one, but we talked about anger management with Deanna Dawson. She's the one we were talking about earlier, who has a daughter named Joy that she adopted. But we obviously all have, if you don't have anger and you're a parent of a disabled kid I want to know what your secret sauce is, because most of us do, and we have different ways of showing it, or maybe some of us are too embarrassed to talk about that, and so we just don't, but it's a part of this, and let's listen to a little clip from that one. 

Deonna:“I feel like we just as a culture and just parents in general, we're expecting our kiddos to self regulate earlier than they should be doing that.

And so that just means, you're self regulating. So that means you have an emotion and then you can control that emotion and you know what to do with that emotion in a healthy way. So that's self regulation. So like, when we have an infant. They can't do that at all. They're totally dependent on us to regulate everything for them. So they cry, we feed them. They cry, we change them. They cry, we rock them. 100 percent of their things depend on us. Yeah. And so then we go into that next stage of co regulation, which is is doing most of the regulation and teaching them how to regulate, hold them and rock them and talk to them about what our feelings are and what we need to do with them.

And, we co regulate and I think we need to do that longer than we’re currently we're expecting kids to just get over it. Okay, it's, you can't cry, stop crying, and you're on your own. And you're like, dude, they're going to cry. Like crying is okay. Like they're going to cry and they need to cry. That's a natural thing. And so we're pushing boundaries, but, and especially for kids with disabilities.”  

Rhandyl: Yeah, and she goes into some really good ways to look at anger in different ways, different perspectives. In this clip, it's funny because the way she's talking about infants. And I'm like, I'm that way. I need someone to help regulate me, I have to take meds to regulate my emotions.

Just the advice she gave during this episode, I was taking notes for sure. And the next clip is Amanda Griffith Adkins. We talked about guilt with her and everything that comes out of her mouth is gold. There were so many things when I was going through this episode, I just wanted to repost the whole thing. It was so good. But just putting different perspectives out there, it's crazy how it can just completely change your mindset on an emotion.

Deonna: And she’s also a counselor with a disabled kid, so she knows just like Deanna. 

Rhandyl: Yeah, so here is a clip from Guilt with Amanda Griffith Adkins. 

Amanda: “I think the first step to any feeling is first of all, acknowledging to yourself that you're feeling it, because it sounds like such a simple thing, but these feelings like guilt and anger, grief they're swimming around in there and they make us feel bad. 

Think that idea of being like, oh, it's my fault is some weird way almost of trying to have control over it. And so we just have to remember like. there's nothing we could have done and I would say to go back to the idea of self compassion ask yourself, if you get if you find yourself getting stuck in these thoughts ask yourself,

'What would I say to a friend that was coming to me and saying that they feel guilty that their child was born this way?’And, most of us would say, Oh, it's not your fault. You didn't do anything wrong. You didn't do anything to cause this. It's just the way it is. And can you extend that compassion that you would give to your friend? Can you try to extend that self compassion to yourself?

And if you look at it from acknowledging the feeling instead of it being guilt as grief, I think that makes it feel a little bit more approachable because it's a feeling that you're sitting with. And then you can have compassion on it. It's not something that you've done wrong. It's just really grief at the end of the day.”  

Deonna: Yeah, I feel like this had a really mind blowing revelation to me, just the fact that I felt guilty about so many things surrounding my kid's disability, and realizing that everybody felt that way. Because it felt like, oh only the moms whose kids get hurt should feel this way. And then realizing that the kids whose moms were born this way, feel the exact same way.

It doesn't matter. Like everybody kind of is blaming themselves for things and it really was just the sadness. The part where she was talking about grief and I'll let y'all listen to the whole thing, but just talking about how it's just grief, but we feel guilty because we think we're in control of this life and we're just not in control of anything.

And so now when things are just spiraling. I don't know, it just feels different to me after listening to this episode and thinking about it that way because things do spiral. There's no control. It's just sadness at the end of the day. We don't have to feel guilty. So took a load off me for sure.

Rhandyl: Yeah, I think just being able to voice what you feel guilty about and then realizing that, oh, I'm not the only person that feels guilty about these things that you feel guilty for even feeling guilty about. It's just like a whole vicious cycle. 

Deonna: This is our first year and we have, we've had so much fun. Yay! I know we did it. We didn't quit, but we are so thankful that you guys who have started out. At first it was just, I didn't know if anyone was going to listen. And so it's so cool that people are listening and some of this is resonating with people.

And me and you are not experts on anything. We just, we know what it's like, we know what our kids are like, and we're learning. Like I was telling a parent the other day, there's certain diagnosis that I am trying to learn. I feel like I'm trying to learn on the fly about all the different things, so that I can understand all these different parents perspectives, and that is going to take a lifetime to right learn all that and to try to understand it. But it's been a really good outlet for me, for sure, to just look outside of myself, and try to do something that is going to be beneficial to people who are in my position three years ago, because it was like a lost puppy dog feeling three years ago for me. And hopefully this can help people not feel that way and it's been super fun and I’m super excited for what's coming up. 

Rhandyl: Oh yeah, like Deonna said earlier, we have barely scratched the surface on ideas and it seems every episode we think of something else that we could bring up later. I'm just excited for what the future holds.

Deonna: There's always something. Yeah. And we're so thankful to you guys who have given us your opinions because like we were saying, me and Rhandyl, we don't know everything. We don't know anything. Like we're just like learning this stuff. 

Rhandyl: We're still a baby podcast. And yeah, we're so thankful for all of the faithful listeners out there that have been with us and can't wait to hear the next one. And all of you listeners out there keep tuning in and leaving us reviews. It's very important for us to it is continue but yeah, we hope you guys enjoyed this episode today as much as we did, and we look forward to more. And we hope that we're making a difference for everyone, and everybody belongs! Thanks for listening.