What Are You Most Thankful for About Raising Your Disabled Child?

In this episode, us and our listeners share what we're most thankful for about raising our disabled children. 

We share our drastic shifts in our priorities, our resilience as caregivers, and the unique perspectives our disabled kids bring into our lives.  

We are taking a break from releasing new episodes until January 10, 2024 so we'll see you in 2025 for season 3 of the Raising Disabled podcast.

Please subscribe, leave a review, and follow us on social media to know about upcoming episodes and to participate in this podcast.

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Transcript

Rhandyl: Hey y'all, welcome back to Raising Disabled. Sorry about the delay. I know that this is A little late, we usually are right on the two week mark for new episodes coming out. But Deonna and I have both been really sick and there was no way you guys would be able to tolerate listening to us or us be able to get through a recording. Our voices are almost back to normal. Bear with us. I've had an upper respiratory infection. I was telling Deonna before we started recording how, I was bragging or mentioning that everyone in the house had been sick and I was able to stay healthy and then it kicked me in the butt about a week later.

It did so Yeah, but we have been it's been busy lately. The holiday season is always busy, but in addition to all of that. One of our dogs has been Puppies a big litter of puppies. So that has been Taking a lot of our time. But it's exciting. It's our first litter and it's so cute. The kids love the puppies oh man, I bet yeah, they both love looking at them. And of course, they're still really little so they're just all cute and sleeping and eating all the time and They'll probably be a few more weeks, they'll be on everybody's nerves, but yeah, that's been fun. It's been our first litter so it's been a good experience. So far with kids. 

Deonna: They're so cute. I need to bring Allie and Cole over to see them because they've really never seen little tiny puppies, I don't think, except for ours, but they're bigger when , you get them. So yeah. 

Rhandyl: Yeah, but besides that, my husband has been guiding a lot of whitetail hunts in the northern panhandle the last few weekends. And so he's been gone a lot. So my parents like our last recap, your parents were helping you out a lot because Dane was doing the training and on and all of that. So yeah, same thing here. The last little while my parents came to Help out. And that's been nice. And we did some Thanksgiving preparation. So I did a lot of baking and just things I can do ahead and freeze. And my mom helped me with that. So that was, that's been nice. 

Deonna: Are you hosting? 

Rhandyl: Yeah, but we just, it's just us and some of Remi's nurses, if They don't have big plans for Thanksgiving or they're not going to family. So they're coming over and then our neighbors usually come over. We like to host and we cook a feast for literally the four of us anyway. So the more the merrier because yeah, we'll be eating leftovers for weeks now, but yeah, it's going to be fun. Yeah. We just 

Deonna: hosted in forever. I don't think I've hosted since I was pregnant with Cole. Maybe I have, but yeah, we're only having Dane's parents over. So it's, yeah, we're going to make way too much food and be eating it too, the same way. 

Rhandyl: Yeah. We started a tradition. Once Remi came home, we actually just recently celebrated her homeiversary November 14th of 2017. Yeah. And so that. Very first Thanksgiving, everyone came to our house and everyone brought all the sides and my husband, he loves to fry the turkeys. So he did that. It's been a tradition ever since. Stay in Lubbock for Thanksgiving and then we usually go home to the big family celebrations for Christmas. Yeah, but that's been our tradition. We just like to chill, hang out, watch the parade and football and parade. Yeah. 

But yeah, then something really fun. Remi started Special Olympics this year for the first time. And she recently had her very first event, a Special Olympics bowling tournament. And it was super cute. She enjoyed it. , they had the little ramps that you put the bowling ball on and then you line it up. And then she. Stood up and pushed the ball down and her teacher and her adaptive PE coach and also her nurse were down there on the, lanes to help with all of that.

And then we had a huge she had a huge fan base, like a huge fan. Oh my gosh. And it was so cute. , once she figured out, okay, like this is a competition, everyone's like watching. She kept, she figured out where we all were sitting and she kept looking. She would push the ball down and before it even got to the pins, she would turn around and make sure we were all clapping for her. It was ridiculous, but cute.

Deonna: She always has a fan base no matter where she is. Oh man. 

Rhandyl: It was so cute. I was happy a lot of people got to be there, but it was a lot busier than I had expected. I didn't know what to expect. Everybody was asking me all these questions and I'm like, I literally have no idea. I just know what time to show up and that's it. And it was fun. She did really good.. And they do also locally though. I was asking like what all sports and they do bowling, basketball and track and field. Yeah, so I'm looking forward to that. Plus, we do our little baseball league. And I'm excited that, yeah, that she's getting to do that and that she enjoys it. A few years ago with crowds and applause and praise and all of that, she would have freaked out. So I was just like, so neat to watch her and watch my son cheering her on. It was just so cute. Oh, man. That's cool. Yeah. 

\I love that. 

But, yeah. Now, I know you guys have been busy cause you guys are doing your annual tradition with your kids for the last, how many years has it been now? Five now?

Deonna: This is our fourth, fourth year to do it. Yeah. We 

Rhandyl: stuffed the van. So tell our listeners about that and how they can help out. 

Deonna: Yeah. So stuff, the van is this idea. I think I got it from another mom who lives in Waco who has a disabled kid, but , I saw her filling her van with toys to take to the hospital.

And so I wanted to do the same thing. So in 2021, we did it for the first time and each year it's gotten bigger and bigger this year is going to be our biggest year we've ever had we have corporate sponsors this year and everything. So we've taken it. Do of course the podcast is sponsoring it.

But yeah, we've, of course, but it's going to be really fun, but basically all you do is you go to my personal Instagram or Facebook and there's links everywhere to be able to do it. And we can do an episode sometime about how to do this if you ever wanted to do this for your hospital, because it's actually really simple and I can go into all the details of it.

If anybody wanted to know how to do this, but I have a giant wish list that has been created by me and the Child Life Specialist at our local hospital. And so it's a little bit of what we want to give them and a little bit of what they want. And basically, you make this wish list on Amazon, and when you go to that link and purchase a toy, that toy gets shipped to my house.

And so we collect them at our house , we start it on November 7th, which is the anniversary of her injury. Hers was November 7th, 2020. And so we started on that day just to make a good thing out of a bad thing and it's a good day to start it. It gives us plenty of time. Cause it ends on December 10th, but yeah, you can go to the link, buy a toy.

It comes to our house and then it goes to our hospital. Here in Lubbock. And also, if you ever want to do this, we can go into this more if we wanted to later. But if you want to organize where your friends and family buy some toys and take them to the Child Life Department at your hospital, they're not going to turn that away.

They don't have huge budgets. And so, , it's a really easy way to help. Kids in the hospital at Christmas and beyond , it's really fun. The kids love it. They both are very invested in it. Even my non disabled son, he's very invested in this.

And, works really hard. We have to process a lot of toys every day and package them back into, smaller packages. He does a lot of that for us. So , that's going on until December 10th. And since we last spoke, she had , her anniversary of her injury and that's always a tough day.

She, for some reason wanted to talk about that day a lot, which I don't love talking about that day all the time. But when she wants to talk about it, I talk about it and she sometimes just wants to rehash what happened and process it and so that's always hard to do, but it was good. Yeah. And , it was four years ago, but still pretty bad.

Rhandyl: Yeah. But it's very fresh in your, 

Deonna: yeah. But sometimes I look at photos and I'm just like, oh my gosh, we survived that. I cannot believe that me, like that I did that in my kid, it's just, yeah, it's wild. And a lot of people listening understand exactly what I'm saying, but. Yeah, not a fun memory, but we decorated for Christmas decor and all that oh, good. Staying out of it a little bit. 

Rhandyl: But, yeah. I love that you guys start that on her anniversary. I don't think I realized that. Yeah. The anniversary of the injury. Yeah. Yeah , so we both have spent, and a lot of you that have spent , a long term hospitalizations. You've probably spent Christmas in the hospital with your children and, or just you or whoever. It's just not, it's not fun. It sucks. And the hospitals do their best to try to make it a special time. Yeah. But like you said, they just don't have large budgets. And so they try their best and they do the best they can to make the kids and parents and everyone, still feel the holiday cheer, but it's just hard. And so I'm so proud that you guys do this and I hope to be able to help out a little more this year with the delivery process and things like that. 

Deonna: You'll have to come. Yeah. Yeah. And it's I was telling one of our corporate sponsors the other day, I went and spoke at one of their morning meetings and I was like, we were lucky because we were financially stable. In that situation, my husband was able to keep his job there were a lot of things going for us that made it not so bad for us, but there's so many parents where dad loses his job because he can't be separated from his kid, he just feels like he can't do it, or he Like he's a single parent or the mom is a single parent and she loses her job or the list goes on and on.

There's a million ways. That the finances, I've heard of parents having to file for bankruptcy because their kids in the hospital so long, things like that. And knowing that their hospital has a bank of toys that they could ask child life, Hey, I am struggling. I don't know if I have enough money. To buy my kids Christmas presents like they could take care of that for you I mean, it's something they can do if they have the resources or at least help you, so Yeah, it's a good thing. So we're excited about that. Another thing before we get into the episode is We are going to take our annual little holiday break from episodes.

And so , this is our last episode until the new year. We're going to come back on January 10th and we just take this break. It's a lot to produce these episodes and we have. So much fun doing it and we love it. But yeah, during Christmas time, it's just crazy. Like we both travel during Christmas and stuff like that.

So we're just gonna, 

Rhandyl: it's just a lot. So we like to take this time to, just focus on family and And then come back fresh for the new year. 

Deonna: And we plan during this time, what we're going to do for next year and things like that. So it's a good little break, but we always miss it and we got back into it and I was like, okay, this is fun. I missed it. So we'll be back on January 10th. We'll see all then and we hope you guys all have a really good Christmas and Thanksgiving and new year. But we're excited about today's episode. It's on theme for this week with Thanksgiving. And so we will see you guys there. 

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Deonna: , , it's Thanksgiving week, and we just want to talk about what you are thankful about raising your disabled child. We asked this question on Instagram and Facebook the other day, and people gave us such great answers, and some of them said things that I had never really, Thought about before. And I was like, Oh my gosh, me too. Or, things like that. And sometimes we just pick some of these, but we wanted to go through all of these because I feel like when you are going through a. Tough time and our lives are tough a lot of the time. I know, I don't know about you, but like I can get really focused on the negative aspects of what happens to me sometimes and just, I don't know.

Sometimes I forget to be thankful for my kid because I'm just so worried or stressed or. Tired or whatever, insert, whatever, yeah, and so I really liked this and so I hope you guys enjoy this and I think this is good for people outside of our world to realize we're not just this like sad family all the time we 

Rhandyl: are, I do feel sorry for us. We have, 

Deonna: no, there's no pity here. Like we're having fun and we actually are really thankful for our kids just the way they are, which is really hard for people to understand. But there's things about my daughter, for example, that she would have never been if she wasn't disabled. And I'm getting to know this version of her that is probably even more special than if she would have been the way she was before, which sounds weird, but we're just, we're going to get into it. Sorry if I butcher people's names when we are reading y'all's names, but the first ones are from Instagram. 

And the first one is, I think it's Jay Rice Luhan. And they said that what they're thankful for is the pure love I get to know and how lucky I am to have that in my life. And. There's no love like the love from a disabled child oh my gosh, like even kids who, I don't have this experience personally, but when a kid who has any sort of developmental disorder loves you, you feel so loved. Like they are. They're in love with you. You're their person and they're obsessed.

And my daughter loves me so much. I know she does. And there's no doubt in my mind. She tells me constantly. But you think of all these kids who can't verbalize that but like they can they show you and it is Oh my goodness. It's amazing to witness and so I know exactly what she's saying here 

Rhandyl: Yeah, I thought it was a really good way to describe the love and for me, I took it on, you know in both perspectives like how they show us love and then also how we feel about them is indescribable. Yeah. So I thought it was a really good way to explain it. It is pure. I think that's mostly true for all parents and their children, but it's like an unexplainable love for our disabled children, I think. Pure is a very good adjective to describe the feeling for sure. It's, 

Deonna: And there's like an innocence there that doesn't ever go away for some disabled kids. And so there's just this innocent, pure love forever. They just are obsessed with you. No I totally, I love that one. 

Rhandyl: Me too. The next follower, Brady Palacios, I believe they said, the way it made me slow down and to cherish the little things, not just with her, but her siblings and to cheer on the tiny gains, to treasure them in my heart and I oh my goodness. I loved this one. It's like all of I just I truly believe us parents with disabled children cherish the little things very well 

Deonna: like your bowling story, for example, from earlier. Yeah. What person has a giant group of 15 people come watch them bowl a couple pins? That is not something other parents understand. Like they drop their kids off at a bowling party and they leave and they don't care. That's normal to a lot of parents, but , your kid has 15 people screaming her name and cheering when she bowls. Everything is big for us. Every little thing is big. And yeah, I loved that one.

And with the siblings too it does bleed over into the siblings. Cole, we're just obsessed with him playing football. Even if he never scores the whole season, we're like, yes, Cole, I love you. Oh my gosh. Yes. 

Rhandyl: Yes. Yeah. That's funny thinking about that actually we've started. Having Remi walk in her gait trainer from room to room. Yeah. She's getting too big to carry around and she can walk in her gait trainer. So this evening she was walking to her wheelchair to eat dinner and my son was, cheering for her. Go sissy. Good job. You're walking so good. And oh my gosh, my heart just wanted to explode. It was so cute.

Deonna: Yeah. Oh, I would have cried if I saw that. Yeah. Yeah, our next one is Allison, Nicole Ford, and she said the way she teaches me about patience, resilience and strength. I'm like, Oh my gosh, I'm amazed by how much she wants to accomplish on her own, no matter how hard it is. And yeah, we watch our kids struggle through really difficult things that they want to do on their own. And. Sometimes you're like, Oh, this is so hard, but that's what makes them stronger and makes them more independent. So that's tough to watch sometimes, but yeah, the patience, resilience and strength, those three things, if you don't have those things, you're going to have a hard time in this world. I didn't have those three things even in 1 percent of what I have now. 

Rhandyl: Yeah, the thing that stuck out to me was. The resilience part. All three for sure, but if there's anything our disabled children have is resilience. They wouldn't be here if that wasn't the case. Remi definitely has taught me what actual resilience is and. I aspire to be as resilient as her.

Yeah. The next one was from Jenna Coats, and she said, thankful for how strong she has made me. I'm the advocate I am today because of her. It made me think like advocacy is definitely a learned skill and it's very hard But and it takes a while, but I'm so thankful and proud of myself for my advocacy skills I don't know if her physicians would say the same but I think that's I think What no, but that's okay. That's also, a lot of the reason that she does progress 

Deonna: or is even alive, honestly. 

Rhandyl: Exactly. This was a great one. I definitely am very thankful for being an advocate. And I remember, but like I said, it's hard. 

Deonna: Oh, it's so learned. Like you said, I remember back in the day you would tell me, like, when I first started this and you'd been doing this for a while and you'd be like you need to tell that doctor this, and this, or you need to tell this person this. And I'm like, yeah, I could never say those things to someone. And now I'm like, oh my gosh, how hilarious that is.

That I thought that back then, yeah, it's definitely a learned thing. And it's a strength that you did not think you had until your first day. And another one of our friends, HK Woodley said, she's just thankful for her. She is who she is because of everything she is. And she is more amazing than I ever imagined.

And she wouldn't be the same kid without her disability. And I'm just thankful that she gets to, that I get to be her mom. And I loved this one just because it is true, like all of our kids, if they were just magically healed and a hundred percent healthy , they wouldn't even be the same person.

These kids are the way they are because of their disability and it's just, beautiful in a lot of ways, even though it's hard, 

Rhandyl: yeah, for sure. 

Deonna: Okay. I accidentally missed part of her comment, but she said, I also am thankful for the perspective my daughter has given me. I don't sweat the small stuff anymore, and it's freeing in a way.

And I'm going to talk about that here in a second, but I feel the same way. I used to be so worried about stupid stuff and I'll get caught up in it still sometimes, but yeah, that is a very freeing thing when all of a sudden, you know, what's important and everything else just goes away, 

Rhandyl: yeah, Remi definitely has helped me prioritize my give a damns. That's for sure. Yeah. Yeah, and I'm glad for that freeing perspective. Although our lives are not really freeing at all, it's just the prioritization of what matters It's honestly just relieving and freeing. Yeah, I love Don't Sweat the Small Stuff, for sure. 

Deonna: And that's why sometimes I feel like, as parents of disabled kids, I don't know it's hard to fit in with the rest of everybody else because we're just like, yeah, I don't care about that. And it makes us sound abrupt or rude, but it's just the truth. I actually do Yeah. Oh, man.

Rhandyl: Our next friend, Estabana12345 said, Grace, remembering that grace is extended to us as parents raising a medically complex kid, as well as grace for him navigating growing up as a kid, but while dealing with all the medical crap that life throws at us, we are both growing and learning.

And love that. , it made me think about scripture and 2 Corinthians 12:9-10, God told Paul, his grace was more than enough and his power was made perfect in Paul's weakness. My grace is sufficient for you for my power is made perfect in weakness and therefore, I will boast all the more gladly of my weakness, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content for weakness, insults, hardships, persecution, and calamities. For when I am weak, then I am strong. 

And I'm like, wow, that's what grace is, and the verse, it just stood out to me so much since the beginning of this journey with Remi, I have never felt so weak, but also so full of faith in God. Compared to any point in my life prior to Remi, and it's the grace of God. That's the only way you can explain it and she explained it so well. Yeah, but it just really made me think and then just how much I feel that in my everyday life. But yeah, it was, 

Deonna: I love that. I love that verse too. There's a lot of verses that I didn't understand until the last four years, which is hilarious. Like I'll read something back and be like, Oh my gosh, I know exactly what that's saying now. But 

Rhandyl: I memorized that in Awanas back in the day, but I I didn't know what that actually meant.

Deonna: I didn't get it. It's, like with, when he says he would boast about his weaknesses I remember thinking back in the day, why would I ever tell somebody weaknesses that I have? I don't want people to know that. And now we're like, Telling every horrible weakness we have. But I think parents of disabled kids are really good at sharing weaknesses and struggles because we know the other people need to hear it and if you do, and we all have a lot of grace for each other.

, like in our little texting group, we'll tell something we did and the others are like, yeah, I would have done the same thing. Or whatever. , but yeah, grace I don't know. I don't have a lot of grace for myself sometimes, but I need to work on that. But no God has plenty for me for sure.

Yeah. , and these next ones are from Facebook, but Lindsay God or Godot or I'm not really sure. , is it French? Probably. She said, I don't know if I've ever seen someone receive so much love as my kiddo gets from our family, our friends, care team, everyone. So I'm thankful to witness firsthand how much love is shared in the world. And we have, Two girls and so many people love them and I think people would have loved them if everything was fine. But it's just so different. Like it is people that just shower them with attention and love and gifts. And it's crazy the way people show up for them and yeah, and , it's interesting to experience as the mom, just. How obsessed people are with just loving our kid and trying to show they're enough, if that makes sense. 

Rhandyl: Yeah, and I think a part of that is, I felt this too, and, but I also feel like everyone that shows so much love sees that our children have so much light everywhere they go. They do, yeah. And not only because they're wheelchair bound and have trachs and vents and all the things, it's That's not what people are, people that know her or Allie are necessarily so, um, drawn to. It's more just like their light and love and it's just, yeah. It's really neat to see and witness as a parent. Sometimes it's overwhelming, but. It's a blessing. 

Deonna: Yeah, sometimes it's a bit much but overall it's good.

Rhandyl: Our friend Ruby, who we had on a few episodes back, she said, I'm thankful for the lessons that she's taught me about resilience, determination, faith, mental fortitude. And the list is endless. I'm thankful for the people that we've met because of her disability that we would have never met otherwise. I'm thankful for the way that God has provided exactly what we needed before we even knew we needed it in the form of people, information, opportunities, et cetera. And yeah, she said it perfect, like she always does.

Deonna:  I know, she's better with words than us. 

Rhandyl: Yeah, I couldn't have said it any better than Ruby. She hit all the highlights. We love you, Ruby. 

Deonna: For sure. No, I do think the meeting the people part, that is very true. , me and you would have never met. It's just probably wouldn't have happened. It's crazy how you have friends because of this. It's crazy. 

So our next one is from Marie and I think it's Sarazine, sorry if I mess that one up, but she says, I'm thankful that she chose us as her parents. She's lucky because we rock. When I read that one, I died laughing, but it is true. I do think our kids Really love us a lot and they know what we're trying to do. They know when we're putting in the effort and it's not in a way where they like feel guilty or anything for what we're having to do, but they know.

There's times where Allie says thanks for what you do for me. Like she gets that my whole life at some points, not all the time, but like a lot of my life revolves around her care, her insurance, her, things like that. And she will just, tell you thank you and a lot of kids can't tell their mom and dad, thank you for that. If your kid can't tell you that they are thankful for you. Whether they know what you're doing for them or not they, I don't know, like they know, even if they can't express it, 

Rhandyl: Yeah. And I think that, our children are definitely More fortunate than others in their situation. And this comment definitely made me giggle because I also think that my kids are lucky to have myself and my husband as parents too, because not only are we in the medical field, but we've got their backs and we do everything we can to make sure everything is okay and we keep the gears going, but yeah, not everyone is as fortunate. No, I. Yeah, I loved this one. It was out of the box. I liked it. It was funny.

But yeah, our next friend, Deanne, she said, I'm thankful that he is my son. He's a strong boy and will be 15 this month. He's an inspiration to me and my friends. Also, I'm thankful for all the people who helped us and are still helping us, especially with all of his needs. I'm grateful for the nurses who are taking care of him, too. There's so many things I'm thankful for, even small things that help him in our life that makes it a little easier.

Yeah. This comment, I related to it, it actually was a good feeling when I thought about this question myself. I didn't realize the unending list of things and people that I'm thankful for. I know. Until I had to narrow it down to what I'm the most proud of. It's pretty impossible to do actually. Yeah, like you said earlier it is hard on our daily basis to think about I'm so thankful that I have to you Know get up two hours extra early to do all these treatments and you know pack all the bags and all the things It's just not you on your daily mind but when you I think it's a really good thing to sit down and think about and So yeah, but when I did it's wow, I'm thankful for like Literally everything. It's pretty awesome, but 

Deonna: I know I get that. Our next one's from Carrie Zylstra, and she said, thankful that my son is a rock star and has shown so many people his strength, which in return gives us strength. He has taught us so much in the three years he has been here. So many big and small things, that we're thankful for every day. 

And so I like how she said that his strength makes them strong. And there are times I have felt that. Felt that way with Allie I'm like, if Allie can do this, then I can do this too. And I, I will be fine. I can do this. It's, gonna be hard, but like she's doing it so I can do it too. 

Rhandyl: Yeah. They're good motivators a lot of the time. The next comment was actually from one of my friends, Brandee Wheeler. She said, I'm thankful that I raised two kids. Two of the kindest, most nonjudgmental and accepting young ladies ever. I am so blessed to have been chosen to adopt them and be their mama. And Brandee is a friend and her daughters have fetal alcohol syndrome. And she adopted them both as young children and raised them so well and with so much love. Yeah. . Yeah. She's just wonderful. 

Deonna: Sounds like it. Oh my goodness. Our next friend is Jana Smith. I always like her comments too, but she said, I'm so thankful to be Hudson's mom. I think having a disabled child first made me a better mom, enjoyed moments more, didn't sweat or oversleep.

Think the small stuff, which I guess is a common theme with all of us. He has taught me so much and displays Jesus in , such unique ways. Thankful for the ways his siblings are more inclusive and kind because of him too. He's our joy boy. And I do think a lot about the sibling part because I think my son would have been a good kid.

Whether any of this happened or not, but having a disabled sibling has made him very different in a lot of good ways. And he's really good about looking for kids who are not. In a group or, like stuff like that. Like he's really good at paying attention to things like that. And I don't know if he would have been. So it's just really cool seeing it have positive effects on him. And I'm thankful for how that's going to carry on through his adult life, what he's going to do. Yeah, I love that too. Yeah. I'm excited. I'm starting 

Rhandyl: to see little things with my son and that just, you know, Melt me and I can't wait to just watch him, be the little big brother from here on out but I,, like she said, though, she felt like it made her a better mom. I've often felt that way that I feel like I'm a better mom to both of my kids because of my experience with Remi, even though I have a comparison to what. Kind of mom I would have been before, but I think, sums up like the whole, like what's important, what we prioritize, like what we celebrate what we stress about like all the things I really think that just knowing my personality and before all this, I feel like, I would have been a lot more worried about dumb stuff as a parent than I am now. . 

Deonna: I was that person. Yep. Okay, so when you think about this question because we've shared all of our Stuff from our listeners or followers on social media, which once again Thank you so much to people who do this for us because it gives us a new perspective on what we're thinking about and it helps make these episodes good because it broadens just like the experiences that we're able to share to be beyond just me and Rhandyl, but Rhandyl, what do you think when you think of this question about what you're thankful for about having a disabled child?

Rhandyl: Of course I'm most thankful for Remi and the challenges. Yeah. That she has and continues to overcome over the last eight years. My life has, like we've talked about, just tremendously changed since 2016. Like my outlook on life, what I put my energy into, what makes me happy. My relationship with the Lord kind of summarizing everything we've already said but I am very thankful for the change, for sure.

But when we asked this question we narrowed it down to what we're most thankful for which was hard, like I mentioned earlier. I think though, if I'm choosing what I'm most thankful for when it comes to raising Remi it would be the community that has surrounded us since having her. Not only from medical teams, doctors, caseworkers, therapists, private duty nurses. Respite. Teachers. Yeah. Adaptive PE. You name it. All these people we would have never came into contact before. And the village is what I call it. Is why Remi is where she is today. The village is how I say semi sane.

It's so crazy. Semi saying. Yeah. It's funny because, yeah, and it's so funny. This is what I'm most thankful for. If I'm having to narrow it down, the village is what I'm most thankful for. And it's so funny because this was initially the hardest part about raising a disabled child for me, accepting that I actually needed this village.

And then once I realized that without it, not only Remi's quality of life, but my own quality of life, it was dependent on the village. And without her private duty nurses, she wouldn't be able to go to school, which she absolutely loves school and everything about it. I wouldn't be able to have a career that I love and be able to do the things that I love and share with other families, and it took us, of course, this was not an easy transition because years to become accustomed to the revolving door of our home. But it's just normal. It's normal now. But all these individuals are thought of as family. I don't know what we'd do without them. And when they're not around, we figure it out real quick and it sucks. Oh man. Know what you're doing on that one. What about you Deonna? So whenever you think about what you're most thankful for in this life we live 

Deonna: Yeah, it is hard to narrow it down. But I'm thankful for the life altering perspective that it's given us and just, I'm so thankful she's alive for a lot of us whose kids have like an injury or something.

You think, Oh man that probably should have been the last day. And so when you get this, what we call overtime, you're just happy that you have a little more time with them, however long it is, you don't know, but so we're definitely happy for that. But the thing that's been good for me is I used to care about what people thought a lot.

I didn't realize how bad I was about stuff like this until now. But sometimes I look back at my life and I'm like, man, I really, I cared about what everybody thought about me all the time. And now It is. And now it's funny because we're always being looked at. We're always being pointed at. We're always having people come up to us.

And you're like in a fishbowl 24 seven. Your whole life is being watched by others in a way that. Normal families aren't. And if I was still like that and cared about what everybody was thinking of me, I would be insane at this point. But for sure I kind of have just realized that.

A lot of people aren't going to like what I'm doing and that's okay. And a lot of people aren't going to understand what I'm doing or just all the different things. And I just don't care at all. And it's a very freeing thing, like we were saying, but it's, Yeah. Like I just don't care. Like it's funny and I probably should care a little more than I do.

You boo. Yeah. Yeah, I know. But and then another thing is I just, I used to think like it was important for my kids to be good at sports or to have perfect grades or this or that, whatever. And it's funny now because. I just, I don't care if either of them are successful by the world's standards, but , if they grow up and they're kind and loving and they have good relationships with people, they're successful in my book.

And I, I won't think I would have felt that way if we weren't living this life, I would have been concerned about, how they looked or this, just like stupid stuff, but, so that's just been so nice having that clarity. And just having that time freed up to care about stuff that is, that matters or having fun with them.

But I'm thankful that she has this strength God that everyone can see she has impacted. So many lives and we'll continue to do that. And people are always like, Oh, you're so inspirational. I'm like, it's really not me though. It's her. And I think about, I never understood speaking of verses that we don't understand, but I've never understood.

It said in Psalms one, 1971, it says, it's good for me that I was afflicted, that I might learn your ways. And. I just thought, like, why would I, why would it be good for you to be afflicted with something that's crazy? I don't want to have a problem, but it really, like you were saying about your relationship with God, like my relationship with God was good, I don't know, like I was doing all the right things and, whatever, but Now, it's this reliance that I didn't have before, and it really was good for me to be afflicted because even Allie she would never have had the faith she has now if this hadn't happened, and I mean, she's getting it at a very young age.

It's not normal, but I think about that a lot, but I, and like you said, the community our personal community that helps us, you can't even tell them thank you enough times in the day for all the things they've done for you. It's, you try to buy them a present to express what they've done for your life.

It's just never enough. 

Rhandyl: There's no way. Yeah, I know. 

Deonna: Yeah. They'll never. understand what they've done for us. So shout out to everybody who's in my house 24 seven, cause you're the reason I'm still alive, basically. Exactly. But also like in a bigger sense, the community, like these fierce, tough parents that were all a little broken, we're all a little screwed up, but I've received so much healing from them, just hearing their stories, or being able to, I don't know just be allowed to tell the bad stuff to them, and they can handle it, and the grief we've been through, being able to share that with people who aren't going to be like, Oh my gosh, I can't believe you

Rhandyl: relatable and they can just, yeah, they know. Our little village amazing. But then of course the communities that we've gathered through, whether it's social or, this podcast, everything, it's something that I would have never in a million years, even a few years ago, whenever I was living this life, 

Deonna: , oh yeah, if you would have told me four and a half years ago that I was going to be talking on a podcast about disability, I'd have been like, I don't know anything about that. And I. Can't do that, so I mean it's crazy, but life leads us in some crazy directions sometimes, but I hope that this Conversation has been eyeopening for the fact to me, like we have a lot to be thankful for as the parents of disabled kids 

Rhandyl: I think that now it's especially with us as caregivers and with our disabled kids, it's like, what you see is what you get. There's nothing like that. We don't put a bow on it and call it, it's just, we are what we are. Yeah, we have no extra energy to put into things that are meaningless.

And 

Deonna: no, 

Rhandyl: I'm definitely. I want to, thank everyone for all their insight and advice and just their comments on this perspective. And it's just definitely helped me even see more things to be thankful for. And so I think even listeners that might not be able to relate to this completely, if you know anyone or are close to anyone that has Someone or that's going through even if it's initially like anyone that's going through any sort of trauma Related to disability like, you can share any of our episodes that you think are relatable to them to help them through this time because I re listen to our episodes sometimes and I'm like, man, if I would have just heard this, if I would have heard my advice from now, seven years ago, oh my gosh I don't know if it would have went in one way or not the other, but I really wish I would have had it.

But that's the reason we're doing this because there's people in our scenarios That don't, and that , need our advice, , all these comments that people put in , you're going through some really tough times, but just know that you're going to be so thankful, and your life is going to be okay, and, Yeah, it's just 

Deonna: And like you were saying it's funny because after Allie's injury and people seeing me out and about with her or Just knowing my story you and you've probably been through this too like the amount of people who are going through other traumatic events like death in a family or or a death of a child or things like that.

I find myself having these conversations with these people. So if you are going through a hard time in your life, you can talk to a parent of a disabled child because they will be able to talk to you about this. They've lived a difficult situation. And that's another thing I've been thankful for is Having the ability to talk to people about really hard things, and I used to be so afraid to do stuff like that, and now within a few minutes, I'll be talking about how someone's husband just died or something it doesn't scare me to have those tough conversations, 

Rhandyl: I just feel like , before I couldn't relate in any way or I didn't really think I had the words to say that would Be meaningful and yeah.

Me neither. I think you're right. Yeah, because there's so many scenarios , that we can help others that are going through difficult situations so bad,

Deonna: , and we're thankful for everybody who listens every time we get an email each week saying how many people listen that week.

It just makes us feel so good. We're like, okay, this is something that people are finding value in. And it just makes us happy that we've met so many of you guys through this. But we're so thankful to you guys for being a part of the Raising Disabled community. It's been such a fun thing. first two seasons and we have so much fun stuff planned, we hope you guys have a great holiday and everything.

Rhandyl: Yeah. And if you guys , like this podcast, you like listening if you want to, you know, Merry Christmas to us, leave us a review. That would be amazing. Yes. The more reviews, the better. And we just , thank you guys for. Listening, and we hope you guys have a wonderful Thanksgiving, Christmas, and Happy New Year!

See y'all next year!

**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.