Rhandyl:

 Hey guys, we are back and I was trying to think of everything that has happened over the last few weeks. I guess Easter happened. So we had a good Easter this year, honestly, Remi, she's never really cared about Easter egg hunting. She's never maybe understood the concept, but this year it was a totally different story.

Even a couple of years ago, of course you see all these fun ideas for disabled kids and Easter. And I tried the balloon one. Where you get the balloons and you tape the string and the balloon to the egg, and then they can go around in their wheelchair and grab the balloon. And so I was like, that is such a great idea. So then I do this and this is very time consuming. I'm doing it, taping it to all these eggs, have them all ready to go. Take them out in the backyard and literally, so we're in West Texas, even if on a good day, the wind's still blowing like 10, 15 miles an hour. That's no wind for us. 

And so I walk out the door and all the balloons just tangle up. And so I spent a solid hour trying to untangle them all. Finally get them all out in the yard. Right. Half of them are like blowing away or the balloons are already deflating and finally get Remi out there and she could have cared less and I was like never again.

But this year I think she really just watching Barrett, my son, he's two and a half and he was all about, when he finally figured out what was happening, he was like, oh my goodness. So I was pushing Remi in her wheelchair out in the yard and pushing her really fast. And we were racing brother to the eggs and of course I would get there first a lot of times. And she would look directly at the egg and point, like that's the one she wanted. And then we would hand it to her and she was just like, bringing her hand back with the egg and just chunking it into the basket. It was so fun, I was happy about that.

My family was also here for most of the weekend and we just had a great weekend. My husband, unfortunately, he had signed up to work like months ago, not thinking that Easter was in March. It was so early this year compared to usual. So yeah, he didn't get to partake in a lot of the stuff, but he did get to see the Easter egg hunts, so that was fun.

And we did do a traditional, like something that his family did growing up, where they would decorate all the boiled eggs. And then what they did was, the night before Easter, they would put all their eggs in the basket for the Easter bunny. And then overnight, the Easter bunny would come and hide all of the eggs from their basket all around the house and then leave them treats in their Easter basket. Oh, that's cute. What'd y'all do for Easter?  

Deonna:

It was like, meh, I don't know. None of our family came in or anything. And Dane actually had to go out of town for his job. And so me and the kids, it was nice. We just laid around and we watched that old movie, Beethoven from the 90s. And I had not seen that in, I don't even know, 20 years. Yeah. And so we don't really do Easter hunts with Allie. Like our neighborhood had one, and they were really nice and wanted to include her and try to make it like accommodating for her, but she didn't want to go because she doesn't like mascots and there was going to be an Easter bunny there and she just was like, no, not having it.  

Rhandyl:

I don't blame her. Those Big easter bunnies are creepy.

Deonna:

Yeah, so we went to church and like my husband got home later that day, but we basically bought two huge pizzas and wings and bread sticks and ate them for two or three days, like me and the kids. So not your typical Easter food or anything, but we had a good time. And so it was, it was good, but it wasn't like, we don't do the traditional stuff anymore. We used to, and I don't know we're just lazy. Cause now my son's older, my son's not into the Easter egg hunt anymore, unless there's like cash in them or something.  So yeah, that's, Yeah, I, I saw this video the other day and it was some parents, like our parents age, and they hid for all their kids. They had six or seven kids and their wives and they hid hundred dollar bills in some of these eggs. And the kids who are like 30 were running around pushing each other down. I was like, now that I could get behind, I would do that.

Rhandyl:

Okay that's funny you brought that up. My siblings, I have two siblings, and We were all married and this was before any of us had kids and my dad decided to do that. Because it was fun and we didn't have any kids, so nobody was Easter egg hunting and we were all home for Easter. And so my dad, he did the same thing. He hid, I don't remember how many eggs it was, but there was cash in them and all the way from like 5 and there was a couple of them with a hundred dollar bills in there. And I was like, in my childhood, like competitive, Easter egg hunt came out in me. But the bad thing was my husband and I ended up finding like all the big bill eggs. And so it was pretty unfair, I guess. It was an Easter egg hunt. I'm like, eh, but that never happened again. That was, that was the only cash Easter egg hunt, but it was pretty awesome. 

Deonna:

It started a sibling fight so your dad's like never again. But yeah, I mean like the last few weeks, I'm trying to think we Cole's birthday was this past week. And so we. We didn't get to do a whole lot. Like when they go to school, it's kind of like, I don't know. And we're not big birthday party type people, but we, he's real into poker right now.

Rhandyl:

Yeah. After Vegas.

Deonna:

And so we decorated the whole house, like in cards and the suits, like hearts, diamonds, all that. And we bought him a really nice like poker set and this like poker table thingy. Like all the things for him to play, cause we've been getting real into it. Like me and him are, and Dane, we play like almost every night. So it's pretty fun.  

And I made him his cake. So that was That was a traumatic experience for me because I was so sick. I was, like, I've been sick for several days. It has totally sucked, but I was sick on his birthday, and I'm like, I have to just dig deep and make this cake for him. I told him I would. He knows it's gonna be this theme, whatever, and so I was so sick. It was the day of the eclipse and shout out to all my nurses who were here last week. Like we, we trained a new sub and she was amazing. Cause I was starting to get sick. And then like Melissa Kendra, like Hannah, they all basically took care of Allie completely with, with Dane and Cole, but I was just so sick. It’s the first time I've been like out of commission since this all happened where I could not function, it was just, it was not fun. 

And so I was making Cole's cake, which I know that sounds gross that I was like making a cake and I was at sick, but only us four who all had been sick were going to eat it. So I'm like, whatever. But I made the cake and it collapsed in on itself, and just like I walked outside and shed some tears and I looked up at the eclipse and like it was just such a stupid memory, but now and then I went back inside and was like, I have to do this over. So I remade the whole stankin’ thing. I hadn't decorated it yet, so luckily I still had all my fondant pieces and everything, so that was good. 

Rhandyl:

You powered through. I can't wait to see pictures.

Deonna:

Powered through, but Yeah, it turned out really cute. It was like poker theme, but I put a little moon in there since it was like the eclipse day. So like a fun memory, but that, but yeah, I was just so sick. Like I still am. You can hear it's just not fun to listen to, but I'll survive. I'll live. You just have to keep going. Like, when you live our life, there's no break, really. It's just suck it up and go on. But thank goodness I have nurses who help me. They, they took care of my baby while I couldn't.

And then we also are starting Challenger. Tell them about that.

Rhandyl:

Yeah this was, we mentioned it I think the last episode that Allie and Remi are on the same little t ball team, and we had our first game this week and it was so fun. I was really worried that Remi was not going to like it because she does not like clapping or cheering in general.

Deonna:

Yeah, and I told you people don't clap that much, but they totally do. I did not remember that correctly. I was like, oh my gosh, there's so much clapping happening.

Rhandyl:

It was the first game too. So I mean everybody's pumped up. Everybody showed up. But yeah, it was so it was surprising, I don't know if it's because we were outside and it's not like we were in an auditorium or an enclosed environment. Maybe that's why but she didn't have any issues with it and she was so happy. She loved it. 

Deonna:

Her little hands were just shaking. She was so happy

Rhandyl:

Yeah and the thing about this little league, everybody gets a home run at bat. So we got to hit the ball. I helped her hit the ball, and then I handed her the bat and she chunked it, cause I knew she would. And then I just run her so fast around the bases in her wheelchair. And that's like her favorite thing.  And it made me so happy to see her happy, and also to see my son cheering for her and giving her high fives and be so happy. And he took off across this field once. 

Deonna:

He did. I watched that happen.

Rhandyl:

I'm like, oh my gosh, it was a toddler on the loose. I was like, oh my gosh, it's worse than a streaker right now or a stray dog. Like he's had to stop the game. 

Deonna:

Oh and in those games, the ball's not the concern. Cause most of those kids can't hit the ball that hard, but it's the bats. Like they, like these kids will just chunk a bat, like 20 feet in the air, like having a good time. And you're like, Oh my gosh. But it was cute. And we worked, we worked a booth the Saturday before that.=

And that was really fun cause we got to meet all these parents who live in Lubbock who live a similar life to us. And so that was really fun. And it was so windy though, it wasn't that windy until the very end, but oh my gosh, if you don't live where it's windy, it's, it's hard to explain, but it just it blew our table over, it blew the tent over all these things.

Rhandyl:

Yeah. Everything, as I was unloading it back at the house later that day, everything was just covered in dirt. So much dirt. Because when the wind blows here, it's brown.  

Deonna:

It's so gross, but yeah, not a good postcard for our town.

Rhandyl:

But it was, it was fun the first few hours getting to mingle and chat with other families and kids that are also in the league. Like I said, this is our first year and I did not realize how big this was. It's exciting. And I'm glad that we're a part of it this year and that Remi's liking it.

Deonna:

Yeah, like you took such cute pictures of my kids out there because I wasn't out there because I was not feeling good. But like it it's such a fun thing. And it's good to see other parents who are going through your experiences out there, having fun and getting to do something like this.

So it was good, but yeah, we had, we had a fast and furious last two weeks and we have a really fun episode this week and so we'll see you guys there. 

Hey y'all. Welcome back to Raising Disabled. So today we're going to do dumb things people say part three. So if you missed parts one and two, you can go back and look at those. They're fun. We basically take a phrase that people say to us all the time that they may think is a good idea or a compliment or, whatever it is. And sometimes they're not very well received by us as parents of disabled kids. And we're just trying to explain why so that you can be a better advocate and have a good relationship with us.

But the one that we're talking about today is “God gives special kids to special people.” And this one, I would say we put this out on our Instagram page, which is Raising Disabled Podcast. We asked our Facebook group, that's our private parent group, that you can join if you just reach out to us on just our regular Facebook page. And I think that we got the strongest reaction I've ever seen for a phrase so far. Do you think so?

Rhandyl:

Oh, yeah. It made people feel some type of way for sure. 

Deonna:

Yeah. People were dropping the F bomb and I was like, okay, this is really making people feel very strong about this. We're gonna talk about God gives special kids to special people and I was thinking what does the word special actually mean? Let's get a definition out there. And it basically means that you're better, greater, or different from what is usual. So I will say different for sure, I agree with that statement. We are different, but I don't think that is what people mean when they're saying this. I think it's more of the better, the greater, it's more like that feeling I get as well when people tell me that.

Yeah. So we're going to go through some of these comments, first of all from you guys and I just want to say that when you guys participate in these questions that we put out there. It makes us better because it helps us know what you guys are feeling because we're only having two experiences that are just us, and we're trying to learn how y'all feel about everything. And so when you take that 10 seconds, 15 seconds to type something out for us, it actually means a lot to us. And so thank you to everybody that does this, but we're going to start with Danielle. And Danielle actually did a podcast with us back in the day, so you can look up her story if you want to.

Danielle Raising Barron. Yes, it was a good one. And so she said, there's so much to unpack with this statement, but I'm going to just read what she said, because I think it's really good. 

She said, I think that for someone that doesn't know how the disabled world works, they can't understand what we go through, no matter how hard they try to put themselves in our situation. They can see what we go through, see what we have to do as a parent, but they can't fully grasp everything. I think that depending on the circumstance, this is usually an easy statement just to say some sort of encouragement, empathy, love towards you. Because to someone that doesn't know our community, that seems like a safe statement to make, which I agree with, it's, it sounds nice. She said, I don't think that when people say this, they ever mean anything bad by it, but rather they aren't sure what to say to upset us, which I think happens a lot, but yeah. She said her go-to response if someone says this to me is that she's no special than you are. I just have the opportunity to show it in a different way than you do, or something to that effect. What do you think about her comments? 

Rhandyl:

That's pretty much exactly the way I feel about it. I don't feel like, when people say this,  they're trying to give us a compliment. Just like Danielle said, that they'll never understand, no matter how hard they try, unless they're in our situation that this can be a very triggering phrase for us.

Deonna:

I've heard you say this exact statement- I'm just doing what anybody else would do, which is true in most circumstances. There are some parents who are like, yeah, no I'm not gonna do this. I can't do this.

I do like how she said at the end that she just has a different opportunity to show it in a different way. And I think you can, even though this is really hard, you can look at this as an opportunity to show what God can do because I would have never been this connected to the disability world. I don't think if it hadn't entered into my house, you know? So I'm glad I get to be this advocate, but oh man, it's hard. 

Rhandyl:

Yeah, it's not easy at all. And it's something that it's you're not born with it. You just become equipped. Yeah, you figure it out. Yeah Along the way. One of our friends, Alex, she said that she does not love this at all. She says, I don't think that my kids that are non-disabled are any less special. And the only people saying it are the ones not having to go through it. And Danielle said, they'll never know until they're living it. Yeah, but, and I agree with that. But she said, her daughter's name is Mattie, and she said just like “you were meant to be Mattie's mom.” I still would have been her mom if I had her and she didn't have her syndrome. And I and that's just the way I feel, we’re meant to be our kids mom, no matter what and whether they're disabled, typical. It doesn't make us more special to be a parent than another parent.

Deonna:

I can relate to this too. She, got paralyzed. So she had this one way, and then now she's a different way. Yeah. And I don't feel like Allie wasn't special pre-disability or anything. She was just as special to me as she is now. It's the same thing. Now, I feel very changed. I will say that, neither of us are the same as we were, but the special part of her, it's still the same exact thing, regardless of whether she's disabled or not.

Rhandyl:

That's a good perspective because It's from your perspective, Allie was typical for four years and now she's not. I can imagine it's changed you and who you are as a parent, but maybe not necessarily the special part. I think the triggering part of this phrase is the word special. Potentially, there's different ways that you can say the same thing and we'll go through those later. 

Deonna:

So this other girl named Twyla said, boy, this one causes me to sigh deeply. I talked to a secular social worker with our sons NICU. She said the rate of abandonment in there is very high. She had this heartbreaking job security, which, oh gosh. She said we're parents and those I know will give everything they can way past the point until it hurts. And she said, if what she said is accurate though, I likely have other individuals in my life that have very dark chapters in their lives and I'll never hear about it. I trust if I ever do though, I'll embrace them with the lavish grace I've been shown. 

And yeah, I think sometimes I get caught up in this trap of thinking, and I'm not exactly sure this is what she was saying or if I'm understanding this right, but sometimes I think, Oh, I'm the only one who has problems. Look at me. Like I have this hard life and then I'll talk to someone else and they'll start pouring out what's going on with them. And it's even if their kid looks typical on the outside or something, they may be getting bullied at school really bad. We don't know what other people are going through.And that's why I don't think I'm more special than any other mom, because so many moms, kids are going through very difficult things. Like my kids is just very visible and so people react to us differently.

Rhandyl:

I think parenthood in general is just, it's the toughest job that God ever will give us. And so there's layers of that, we have different layers and more life or death. Yeah. But going back to what Twyla said, about the NICU, I literally lived in the NICU with Remi for I guess she was in the NICU for the first like eight months of her life and then we went to a different floor, but basically the same thing. But it was really disheartening to see how many babies that were there that their family caregivers, parents either chose not to be there or couldn't be there. There's a lot of situations the NICUs are very strict. You can't have siblings in there. And there's a lot of stipulations and reasons why family members may not be able to be in there. But it was hard, and a lot of times I felt like I was the only one there for long periods of time. But I also met great moms in there that I'm still really good friends with that live all over the country.

Deonna:

Oh, yeah. A parent can walk away. Yeah. They can definitely walk away and be like, I can't do this. I just can't do it.

Rhandyl:

Yeah. And, ugh. So for me, I think that God chose me to be Remi's mom, but I don't think that I'm more special of a mom than any other mother that loves a child unconditionally.

Deonna:

So our friends, Ruby and Grace, they both said the same thing. And this is actually a meme that they sent us. And it is so funny. I like, I love it. Laughed out loud when I saw this, but I, it said basically if someone says this to you, you say, how does it feel to know God doesn't think you're special, Karen? And it made me laugh so hard.

Rhandyl:

I think it's just, yeah, that's just like the special part of it. Like I said earlier, that's really the triggering part of the whole phrase, I think. Yeah.

Deonna:

And it does, like we bond faster, like me and you bonded a lot faster than I have with other girls in this town that don't have my shared experiences. Like when me and Rhandyl and our friends, Brooke and Alex and Kami get together, we were instant friends. We didn't even know each other, but it's like we bonded in a very quick way. But I don't think that we're all so special and high and mighty or anything. But it, we do bond faster, I guess, cause we know each other's life.

Rhandyl:

Because we live a different life. Like you said earlier. Yeah. 

Deonna:

But, I think there's other parents in this world who are special in totally different ways like it's yeah, I don't know, I just don't value us over others like, but this made me laugh really hard that you know, you’re not special.

Rhandyl:

Yeah, like we said earlier, people that say this clearly don't have disabled children or disabled child but and then someone said, how special would you feel if your child had a disability? 

Deonna:

My nurse said that, when I saw that and it was my nurse, it made me laugh because, when we go out in public, it's just, you're treated in such a strange way a lot. And she's privy, she witnesses that with us on a daily basis. And for the most part, the world does not treat disabled people that great. And so it's hard. You don't feel special. A lot of times you feel not great. So it made me laugh. Isolated, left out. Like all the opposite of special is like what we end up feeling. It's what our kids feel. And yeah, when I saw that she posted that, it made me laugh 'cause she's with us more than anyone else. 

Rhandyl:

Yeah. And I think we're just ordinary people trying our best. I feel that way. Yeah. Yeah, me too. But it's also a very dismissive. Someone said it seems dismissive. And it's like good job, pat on your shoulder, but they don't want to get too deep into the conversation. 

Deonna:

I'm going to bring God up so you can't get offended by this statement. Right. Yeah. Throw God in there.

Rhandyl:

Throwing God in there makes it a little more special. It makes it sound more meaningful. More spiritual. Yeah, we had a few people I want to say a handful of people said, I just want to punch them. Yeah. Anger. Like Deonna said earlier, there was lots of F bombs, it was Very triggering.

Deonna:

I told Rhandyl I forgot that I asked this question, and I got on there and I saw someone say the f word to me and I was like, whoa! And then I remembered that we had asked a question and I thought okay people aren't being mean to me, but yeah not today. But so me and Rhandyl are gonna share our thoughts on this. And then we have a really great insight from Rhandyl's uncle who's Bible scholar extraordinaire. So when I saw that he answered, I was excited, but I do think we live a very unique life. Like it's different than most people's. There are things we do that no one can relate to really. I do think it's very different. I'm not going to ever pretend like it's not, cause I feel like it's normal just when you're chilling at the house, but the second you step out of that door, it's not. The same as everybody else. So that's definitely true, but to me, this kind of gives me a few different feelings.

And when people tell me this, I don't get like mad or anything, but it is a strange thing to say,  but to me, it like insinuates that your disabled child is more special than your typical kid. And I have had many occasions where she is treated very special, and my son is just sitting there cool, thank you for noticing me, I’m a human being too, but. And that's not Allie's fault at all, but I was telling Rhandyl just like last night, we were at a restaurant and people were just fawning all over her, like buying her gifts, our meal got paid for, people were complimenting her shoes, just, going crazy for her. And no one ever looked at Cole, said hi to Cole, did anything. So the world does treat our disabled kids very differently. And sometimes it's good and sometimes it's bad. It just depends on the situation sometimes. But I view them exactly the same. I try to treat them the same. Yeah, I try to be as fair about that as I can be. Obviously, like we talked about, the disabled kid takes up more of your time and energy, so that's hard. 

And if you want to listen to that, it was about a sibling perspective, but that happens. But I just think about Psalms: 139, where it says that you're fearfully and wonderfully made. And that's every human being. God doesn't show favoritism, like in Romans: 2, it says there's no favoritism there. So I don't think God thinks Allie is special, but Cole's not. Deonna is real special, but this mom who has typical kids is not special. It's funny and silly, but yeah, God views us all the same and loves us all the same. 

And so that's not a scriptural comment, but I have lots of Christians who say that to me. It's mostly Christians who say this to me. Another thing about this that I'm not sure about, and I'm not an expert on this, but to me this kind of, this tells parents of disabled kids that they were just predestined to have this life. I believe in a lot of different things. About God knowing what's going to happen to you, but I'm not sure if God's like Oh, Deonna, that, that girl is special so I'm going to really create some difficult situation for her, so she can just show people how special she is. Like I, Yeah, I don't feel that way.

Rhandyl:

No, so that's the thing. We'll get into what Chad said, but it's the challenge that we have. To live with every traumatic situation or challenging situation we don't know, we don't know why. And we don't. This is definitely this phrase of God gives special kids to special people. It's not biblical. Yeah. It's just insinuating. I catch myself doing this sometimes- quoting what I think God thinks and it's that's not at all the way He thinks.

Deonna:

One time I did this Bible study, it was a Priscilla Shirer study. She's really great. Like I love her, but she did this Armor of God study and when we were doing it, she was basically saying at the beginning that she believes people who are these big warriors for God, sometimes the world is just going to come after them because they're trying to do good. And they're trying to share God with people. And like the devil doesn't like that. That's not his thing. He's like no, I'm going to come after this girl. And so I remember when she said that being like, oh my gosh, I don't want to do anything special because I don't want Satan to come after me. I just want him to leave me alone. 

And so when this happened to Allie, it was a few months after that, I heard that. And I do remember thinking, for a moment, is this what is happening? It was weird, but I do think that if you're being this person who's trying to be a disciple for God, the devil's like, I don't like that. I'm going to make this difficult for you. 

Rhandyl:

Yeah. I think that’s what we discussed last episode. It's a guilt thing. Yeah, I'd be lying if I said that I didn't pray, I don't even know how many times, for me to take on all of Remi's disabilities.

Deonna:

Sometimes this is so irrational, but there's been times I used to pray Oh, I want to do this big thing. I want to be this person who makes this huge difference in a lot of people's life. And then this happened. And I I used to ask God please give me this Big purpose in my life. I want something big, and then this is happening now. And I'm just like, did I ask for this? But that goes back to the guilt thing. And I didn't ask for this to happen, and I don't think it's made me more special or whatever, but I do think it's what you can do with it. And my thing is I do believe truly that God can turn us into these amazing advocates or these amazing disciples for him, or change makers. Yeah, big time. 

And I do believe that God knew this was going to happen to me. And in my personal experience, we're going to talk about in a second. But in my personal experience, I feel like certain little things were getting me ready for this really difficult thing. And it was certain Bible studies I was doing. Just random stuff that was all kind of culminating. And then all of a sudden when it happened, I had more to hold on to than I think I would have. So it's not like I didn't feel ready for this at all, but it did feel like I was ready to take it on in a way compared to maybe what I had been like even a year before. So it is cool when you can look back and be like, oh God got me ready for that. I didn't even know what was happening, 

Rhandyl:

I can definitely relate to that because in Mine and my husband's case we were both medical professionals prior to Remi's birth. And there are so many occasions, which we've talked about in previous episodes but so many occasions that he caught something that the nurses and doctors didn't see when she was hospitalized. Or I can't even tell you, dozens of times, we've saved her life because of our medical background prior to having her. And so I think that we may be more equipped to handle the pressures or advocate properly. But like that doesn't indicate that we're superior to other parents or more special. But like I said earlier, I don't think I'm more special of a mom or a parent than any other parent that loves their child unconditionally. So that's where I stand on this whole thing. I think there's some instances that we were equipped and we talked about this earlier, like personality types. To spin it around on  your relationships. When you have that support, you're not having to feel like you're taking it all on. 

Deonna:

Oh yeah. Even on an extended family level. Yeah. Oh, for sure. Because, we have extended family who would Bend over backwards for us. And I know we've had lots of conversations with other moms who are like, yeah, my mom doesn't help me or my, siblings won't help me or this or that. And you're just like, okay it takes a lot of time. It takes so many people to be okay. So even if you are well equipped, if you don't have that group around you, it'll be really hard.

And everyone listening to this, who is in our situation in some way, it is very hard. And I think this quote is spiritually charged, but I do think that, as far as what we're saying about being equipped, like for me, I didn't feel ready for that. There's this hilarious video. Oh my gosh. I  laugh out loud every time I see this. It's the first day that your kid gets diagnosed with a disability. And it's that scene from Barbie where Barbie's laying on the ground, crying. And then it was like a year later, or something like that, and it shows that scene from Devil Wears Prada where Meryl Streep's getting out of the elevator. Yeah. And everyone's scared. And I was like, it's so true. It really is. That's awesome. 

We joke around in our house cause there's a Taylor Swift song where it says, “can the old Taylor come to the phone right now? No, cause she's dead.” And it makes us laugh so hard because. When I look at photos of me pre Allie's injury, I am not the same as I was. I am much stronger, much all the things, but I don't know, I don't feel special in any way at all. It's just different. You got to do and you become this other person for sure. I think that if somebody said you're a lot different now, it'd be like, Oh yeah, that is a true statement. Like you are a mean, crazy lady now, but special no, mean for sure. Oh my gosh. But yeah, I think it's funny when people think we're special.

Rhandyl:

Yeah. My uncle, Chad Bird, he is he's a writer. He has multiple books published and he's a scholar. He works for 1517 but I wanted to just pick his biblical brain about this phrase. And he said that it would be like telling a parent, God gives violent kids to violent parents 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 couldn't agree, with all of that more. Like he said, we don't know why.

Deonna:

Yeah, I like the quote that he says about how it puts this additional pressure on parents to find this hidden ability within you, because I think about this has happened to me a few times. I did a few little speaking things back in the day where I would talk about different things in front of women's groups and stuff, and then it was like, as soon as Allie got hurt, it was like, people just all of a sudden thought that I had become a completely different person.

And I really feel like I have, in a way, over time, but it didn't happen all initially at once. And people all of a sudden were like, oh, will you come speak at this event? Will you go do this? And I'm like, no, first of all, I'm so traumatized right now. I can barely even talk about it without crying, but it was like people had in their mind that I had stepped into this other level of being this special person, and I think a lot of parents of disabled kids feel like they have to become these big advocates.

And I think me and you feel like that sometimes. And that's probably how this has been born. But this isn't for everybody and you don't have to feel like you need to do this big advocacy thing to make this difference in the disability community, I don't think. But I was thinking, when he said the part about he promises to be with us, we have this book called Scaredy Cat by Max Lucado, and we've only read it with her a few times, but there was this poem, prayer thing that she now has latched onto. And so she says it every night before bed and it just says, God, you are good. God, you are near. God, you are here, and God you love me. And I think that's a really good prayer to teach kids because it's super simple and it's reminding them that God is good. Good. He's not trying to come out and get you. He's you know, He is good. And even though these bad things happen in your life, because I think most people who leave the Christian faith, leave the Christian faith because of this little sentence right here about how we just don't understand why things are happening. And if we can't understand something, we're just going to abandon it. And there's no way to understand God. You're unable to grasp him as a human being, and so I think when people don't know how to handle a situation they can blame him and leave their beliefs of that, but I like how it just says, God, you are good, to remind them of that. God, you're near just saying he's there. He's around, He's near to them, but saying, God, you're here. Because I think it's important to teach your kids God is here. He is in your house. He is in your heart. He's present. He is everywhere because sometimes He can feel far away, especially when you're going through a hard thing as a kid. And then God, You love me. And I think that kind of sums up some of this is. God loves every single kid. There's a million songs about it, and He loves us as parents. He loves us as kids and this is a simple thing I think that kids can learn. So we've liked having her say that it makes us feel better to hearing her say that like really makes us feel better. 

Rhandyl:

Yeah. That kind of reminds me of a poem from Where the Sidewalk Ends by Shel Silverstein.  I read a lot of these poems as a kid. I did oral reading in UIL. And and I remember this particular one and it just hits differently now, at this time in my life. But it's called, No Difference, and It says “Small as a peanut, big as a giant, we’re all the same size when we turn off the light. Rich as a sultan, poor as a mite. We're all worth the same when we turn off the light. Red, black, or orange, yellow, or white, we all look the same when we turn off the light. So maybe the way to make everything right, os for God to just reach out and turn off the light." 

And I love that so much now. That is really good. Especially now, it just, like I said, it just hits different. And you can put that poem into so many scenarios, and it's so true. None of us are any more special than the other. So sometimes I wish we could just turn the light off for a little bit.  

Deonna:

The lights are always on, it feels like. Yeah. Oh man. That's a good one though. 

Rhandyl:

Yeah. So we had talked about things that you could say to parents of disabled children, instead of “God gives special kids to special people.” And I think this is saying the same thing, but a lot less triggering. Deonna and I talked about this. We've had people say something similar, but it just hits different. So like someone says, “you've really taken a tough situation and made such a great testimony of faith with it.” Or just, “you've taken this difficult path and turned it into such a blessing for others.” I think it’s good to say is “I can tell that God is walking this path of parenthood with you” because yeah, I mean for me without my faith and without God then my parenthood and my journey thus far with parenthood I cannot imagine. No, me neither. So obviously this phrase is geared more towards the Christian faith. So if you want to tell someone something like that, then complimenting their faith during their parenthood 

Deonna:

And that reminds them that God is near to them. It's a good reminder that he's there because sometimes it can feel like he's far away when you're going through a bad.. it can either feel like God's far away when you're going through a bad thing, or it can feel like He's closer than ever.

The last one we thought of, and there's honestly a lot of other ideas, and if you have other ideas of ways to say this differently, you can give us those ideas, because we would love to share more. Yes, message us. But this one just says “your child is so blessed to have you” and I do think that is basically what the people are trying to say. They're just trying to say you're doing a good job, your kid is really blessed to have you, and that's really the gist of what they're trying to say it is.

So we hope this has been helpful to you, and if you guys have any comments about this episode, you can always leave them on our instagram or you can send us direct messages this is our third one in the series. So if you guys have just started being with us, you can go back and listen to the other ones. So the two that we've already done are “everything happens for a reason” and “you're so strong.” So you can go back and listen to those were fun ones. And so Yeah. We hope y'all learned a little bit today.

Rhandyl:

Yeah and like we've said in the beginning, these phrases we know that they're meant well. The reason we're doing the series is just to bring awareness to people that might not know how triggering certain words are. But, everybody has their own opinion, obviously. Not all parents are going to feel the same way we do. That's why, like Deonna said in the beginning, we really want, as much input from other caregivers as possible. So keep on bringing in those comments and answering our questions because  some of your responses actually changed my perspective of this phrase a little bit. Yeah, me too. Yeah. So, thank you guys and we'll see y'all next time.