Episode 13 - It's a Big Deal To Us

speaker-0: Welcome to Even If the Special Needs Parenting Podcast. I'm Michaela.

speaker-1: And I'm Mariah.

speaker-0: How's it going?

speaker-1: That's all right.

speaker-0: It's all right, all right, all right.

speaker-1: Yeah, we we were in Amarillo for quite a bit yesterday for Ellie's band contest. So that was a good that was a good day. They did really good.

speaker-0: I remember one time we went to band and it was one that was further on. It might have been area. I don't know. Yeah, that was a long time ago. And I just remember it was so cold that year. The wind chilled, the wind it was ridiculous. And I remember half of us couldn't even play our instruments because like our mouthpieces were like freaking frozen. It was insane. I don't know why out of all the my band memories, that is one that I remember and it was a miracle that like we moved on. That's so funny. It was so bizarre. It was yeah, I don't even think I could play 'cause I played a read instrument and it was so cold. I couldn't do anything. I couldn't even move my fingers. It was so freaking cold.

speaker-1: It was it was actually pretty nice yesterday. So they did good and they'rea

speaker-0: We've got winter.

speaker-1: so they'll be in Lubbock in a couple of weeks. It's fun.

speaker-0: So lovely band. Darby's so mean to band people. There's like beef between band and orchestra around here, apparently. Yeah

speaker-1: they would be on the same team on the like

speaker-0: I don't know. Fine arts team?

speaker-1: The s yeah, the same fine arts

speaker-0: Apparently there's not. You know, they have like rumbles in the parking lot and stuff like that. I don't know. He's in Texas. Yeah.

speaker-1: Well, and then yesterday also was Byron's birthday. So

speaker-0: Happy mother day, bro.

speaker-1: It's just w kind of another day when you get

speaker-0: Yeah.

speaker-1: I mean, I tried to make it special, but it's just hard whenever we're having to chase kids around.

speaker-0: When you're sitting in the stadium watching your kids' band perform

speaker-1: And really we were up there for maybe fifteen, twenty minutes and that was it. 'Cause we just watched our kids and No, we did not stay and watch all the other bands. I mean, it went until nine o'clock. Emerald High School did not do theirs until nine o'clock. So

speaker-0: That's middle.

speaker-1: just like I'm not no, I'll watch my kid. And we left. And then they found out they got ones and they were moving on, so it was great.

speaker-0: Yeah. So today's episode is basically about what counts as a win and why counting wins is important. So basically when life's asked so much of our families, every step forward deserves to be seen. A win doesn't have to look impressive to someone else to matter deeply to us. And I think we can all resonate with that because most other people don't understand like why the little wins are so important to us in the way that they are. So We're talking about noticing and celebrating progress, especially when it is easy to brush off or feel like, you know, is it worth celebrating? Do we need to celebrate it? How do we celebrate it? All of those things. So, is there a specific way that a win is important to you or like what it means to your family, like whenever y'all go through it with Lucy?

speaker-1: We probably don't I don't know. I mean, we get excited and we clap hands and and you're like, Yay! You know, like if she's like, Mommy, mommy, come here, come here, come here, watch me, watch me and then she'll do something, you know, like like this week it was her left arm, she was able to raise it above her head without using her right one to push it up. And, you know, it's just like, Yay, that's awesome. But so

speaker-0: Is she able to lift her right arm fully but not her left? Okay.

speaker-1: Her left arm has always been so weak. Always. Do it without the system. And no,

speaker-0: And now she can do it just like a one time thing.

speaker-1: and it it comes and goes. A lot of times after she gets her dose, she's stronger and she can do things and then it will kind of taper off. But that higher dose spinosa that she just got is supposed to help maintain it longer to where maybe they're not losing function as they get closer to their

speaker-0: Get her a little dumbbell and let her like sit over there and like.

speaker-1: some iron. Well, and there's another treatment that we're gonna have to look into, that milestatin inhibitor that just got FDA approved in September. And that would be one that she actually could get stronger. And actually you know what I mean? Like she actually could be like trying to pump some iron and get get a little bit stronger and also help just repair some of that damage, that atrophy that she has.

speaker-0: Yeah.

speaker-1: Help repair some of that. Damage just

speaker-0: The Sylvester Salon over the top where he like sits while he's driving and just like wow lifts weights in the car. But she's driving her wheelchair, she could just do

speaker-1: Curls. my gosh. You remember that movie? Of course. and then okay, sorry, this is a side note. Since yesterday was Byron's birthday, he loves Rocky, you know, loves Sylvester Stallone. So he Sylvester Stallone had a memoir that came out at the end of September. So I was like, Yay, I know what I can get Byron for his birthday. And so I've had it four weeks now, hiding to give it to him yesterday. I waited and I was gonna give it to him when we got back from Ellie's band contest. Well, since we're in Amarillo, he's like, I'm I I'm gonna go to Barnes and Noble and get Sylvester Stallone's book and I was like, Dead gummit like

speaker-0: No you can't. And then you can't tell him why you can't

speaker-1: And then I ruined it because I'm like, I already got it for you, so there's no reason for you.

speaker-0: You didn't ruin it. He ruined it.

speaker-1: Yeah. But then he's like, Well you should have given it to me this morning. I'm like, don't blame me for you. I'm like, We ruined the prize

speaker-0: Good surprise.

speaker-1: on you. I'm like, quit buying stuff during your birthday month. Just stop it because you don't know. Really? Yeah. Yeah. But we did ruin the good surprise.

speaker-0: And I mean and I can see why like to other people just that that specific dynamic with Lucy doesn't always seem like a big win. You know, it's like, raise your arms, okay, everyone can just raise their arms. But you know, whenever you've lived with her inability to do that for what, thirteen years, it's that's a big deal.

speaker-1: I know. And you have to think about when it comes to physical disabilities and like the process of that we went through to get her diagnosed. I mean, she was losing so much.

speaker-0: Yeah, and fast too.

speaker-1: Fast, you know, just just the crawling and being able to stand and on her own and these different things. It was just like within a month, she couldn't do it anymore. And it was just completely gone. And so whenever you do have these little things like this that pop up, you know, just sometimes just so randomly, you know, it's just exciting because you're like, this is just such a big deal to see these things because man, you remember those time things time frames whenever they were just gone.

speaker-0: Yeah.

speaker-1: but true, I'm I would say we're not always the best to just I'm not calling my neighbors over and being like, we're gonna sell. No.

speaker-0: I mean that's probably the looks true.

speaker-1: I know.

speaker-0: We need a reason to invite the neighbors.

speaker-1: I know. Lucy raised her arm above her head, you guys.

speaker-0: I think can you imagine that phone call and be like

speaker-1: Alright. Okay.

speaker-0: job Lucy? Why do you think it can be hard for all of us to stop and celebrate when we're so focused on the next just everything's just day to day, over and over and over, you know, kind of the monotonous stuff that we deal with. Why do you think that it's hard to stop and celebrate whenever these things come up?

speaker-1: think it is like you said, it's just you get in this routine of every day and it's the same thing and you're just going here, going around, you're chasing kids around and you're just busy. You have your job, you know, whatever all the time. And so you probably just don't I don't know, maybe notice or

speaker-0: Yeah.

speaker-1: don't make it as big of a deal as really we probably should. And I like especially with Lincoln For us, I, you know, he he does all the things that he does. And so I'm not always just really focused on him as much sometimes as I am Lucy. But I I really I've always wanted to have the mindset not to take for granted the things that he can do because he shouldn't be able to do it.

speaker-0: Yeah.

speaker-1: So when he's shooting basketballs and he's doing flips on trampolines and he's doing all these things and there are times that I see him and I'm just hit all of a sudden like, my gosh, like this is just incredible that he's able to do that because he shouldn't be able to do

speaker-0: Dude. Yeah. I think I mean, I think most of us, like you were just saying, we get into problem solving mode. We're in survival mode. Like we're so busy managing all things that are thrown at us at us on a regular basis that unless it is more monumental, it's just something that's easily to slip through the ground.

speaker-1: Facts. Yeah.

speaker-0: Have you ever felt like it was something that, you know, wasn't that big of a deal that you didn't have to take the time to celebrate because there was just so much other stuff going on that it was kinda like What's the point?

speaker-1: If if if Lucy's excited about it and she wants me to see something that she's doing that she hadn't been able to do, I mean I do always feel like I'm I I'll come in and be like, that's awesome, yay. But you know, it's it's yeah no. It is it's hard whenever you're just running I don't know, just so busy and just running around like crazy all the time.

speaker-0: Do you think that's enough for her in those moments and she's able to understand how big of a deal it is, or do you think she might need more when it comes to those those little wins for her?

speaker-1: I guess I'd have to ask her. Like, I don't know. I mean, she's a big enough girl that I can ask her. Yeah. And then sometimes, sometimes we laugh. Sometimes it's funny because I think for her, it is a big deal. But she also knows that like for s an anybody else, that would not be a huge deal. Yeah. Like, like she'll pick, like when she'll take a bass, she'll she'll push down and she'll pick her butt up. And she you know, and she can do that and she just she gets so excited whenever she can do that and then we'll you know, I'm like, Yay, that's great but then we're laughing too because it's just like it it's a huge deal for her, but for anybody else, just it's like, Wow, that's great

speaker-0: Look at you. Yeah. That's funny. I love that she gets excited about it. And I, you know, I think a lot of us probably get stuck in that rut in time where we're like almost minimalizing it ourselves, even though we shouldn't, because it is something that is, you know, a big deal. And I remember there early on with Dawson for a while, I was like posting all the things that he would do, the smallest thing, the smallest purposeful movement, like Anything he would do, and then I felt like I'm like, okay, I'm overdoing it. Like people don't want to see all this. They don't want to hear what a big deal that it he you know, that he did this little tiny movement with his hand. Yeah. You know, even though for us it's a big deal and I understand how big of a deal it is because I understand with cerebral palsy on top of having a visual impairment, on top of like having the connection between body and brain, you know, to me I know why it's such a huge deal. But you know, it's hard to make other people truly grasp in concept why something like that is a bigger deal in reality than what it looks like from the outside. Yeah. Well I had I had a people chastise me a little bit. There was one time I posted something and I was like, I know I overpost, but you know and then several people were like, Don't you dare apologize about, you know, showing us what amaz but you know, not everyone feels that way either, I feel like. You know, you got some people that understand and then some that are like, There's Michaela again. Yeah. I guess. Well, who cares about their kid picking their nose? Yeah. And they pick their nose. I remember watching him and he like intentionally went straight up there and I was like, I've been waiting for this day for so long.

speaker-1: His Aunt Momo wants to see he does. If they don't wanna see it, they can just scroll past it. I won't pay attention.

speaker-0: And I think another issue is like almost like in that regard, a lot of us feel like we have to explain. And then it's like, what's the point if we have to over explain why it's a big deal before people can understand why it's a big deal? Yeah. Because then you have to write like this long no novel about why it is a big deal and that kind of just takes away the joy you feel when you have to like almost explain so in depth of why it is such a huge milestone.

speaker-1: Do you think I don't know, do you think we would be surprised maybe even if people don't have kids with, you know, this the special needs and stuff that we do, that they can be like empathetic and they can be understanding even if they don't know everything very well. Like I'm just saying like more than we realize.

speaker-0: I'm sure. But I think we're also bad about talking ourselves out of things or getting in our heads and like, you know, minimalizing things just because we're living in this world that you know, in this bubble that we're like, people outside of it, they they really don't care what's going on in the middle of our bubble, you know. And I think a lot of times we are probably guilty about talking ourselves out of that. But then it's like find that line because you also don't want to be an overshare. But then you don't want to be an undershare. I just think it's important for us to all remember that. It is okay to make space for progress, something like ordinary from the outside. But just, you know, because it's it's for our kids, right? You know, if it's if it's for me, I'm definitely not a horn tutor for myself. But I'm definitely gonna toot the horn I'm not a horn tutor. I'm definitely gonna toot the horns of my children way more than myself. Yes. So I think it's important for us to remember that it's you know, it's about our kids, like showing their courage, their persistence, their effort, and how amazing they are, you know, in those small moments over, you know, talking ourselves out of them.

speaker-1: Especially whenever like they're going to therapy and they, you know, they have their goals that they have set for them to do that they might not have been able to do. Like for Lucy for a while, it was like at school opening a door on her own and not having to have somebody else open a door. And you know, whenever they reach those goals and a lot of it's because of, you know, we're working on it in therapy and we're doing this and and then whenever they finally do it and it it's just so encouraging and it's so exciting for them. To be able to do those things when there is a goal set.

speaker-0: Yeah.

speaker-1: But then sometimes they've set goals before that I'm just like, okay, like we gotta make sure we're setting achievable goals. Okay. Like let's not do

speaker-0: and that is definitely something you have to do correctly in the educational setting. Yes. Is make sure goals are reachable because you yeah. That's a soapbox I will not get on because that's a whole nother

speaker-1: I know.

speaker-0: conversation when it comes to IEP meetings. So

speaker-1: 'Cause there are times that I'm just like the like we've talked about goals before and I'm like, Do you really understand what spinomuscular atrophy is? Because like her transferring from her wheelchair to a toilet and being able to go to the bathroom by herself, like it is a dream. I would love for her to be able to

speaker-0: Yes.

speaker-1: go for her. No, that was something that we had discussed. Like they asked me if that would be a goal for her. And I was just like, No, we're not gonna do that as a goal for her. I'm like

speaker-0: That you're optimistic.

speaker-1: Would absolutely love for her to be able to do that one day, but I was like, That's not gonna happen.

speaker-0: And then even then.

speaker-1: Yes. And then even if she could transfer, I'm just like, how is she take you know, getting her panties down, getting her pa you know, like how's all that stuff gonna happen?

speaker-0: That's lot.

speaker-1: Even when you get over to that position.

speaker-0: And it's not even just strength you have to have for that. It's so much organization. It's just so many steps. People just don't stop and think about, you know, in that perspective, like how much actually goes into it. Yes. It's a

speaker-1: Yeah.

speaker-0: lot. And I'm just happy now if Dawson, you know, will just look at something. Yeah. That sounds horrible. No, no. But that's that but that's in regards to regression due to all of his seizures that have come up and just things like that. It's just so yeah, you know. I have I've had to take a step back and think about, you know, now progress for him because I'm bad about comparing it to past Dawson

speaker-1: When he was doing

speaker-0: so many more things than he is now. And it's, you know, I that's that is that has definitely been a challenge on trying not to compare him to himself, you know. 'Cause you say, well, you you only compare him to themselves and not other people. Well now I'm comparing him to him his old self and that's not fair to him either. So Yeah. Yeah.

speaker-1: And that's so hard

speaker-0: He still does things. He still does things and he still, you know sees things that should be worth, you know, celebrating and doing. So

speaker-1: But it is hard. Any type of just regression that we have to see as parents with our kids is so hard.

speaker-0: Yeah. It sucks. Okay, so transitioning out of that, we kind of set the foundation for the episode a little bit. So but now we are moving on to I don't want to say a fan favorite because I don't know if it's fan favorite or not.

speaker-1: No clue if

speaker-0: I know. But I like it, and it is why did you cry this week?

speaker-1: It is a host fa a co host favorite. So we don't care if y'all are favorite, yeah. We don't care if you like it or not.

speaker-0: It's just because we make fun of ourselves for crying about everything all the time. And

speaker-1: Every freaking second.

speaker-0: Yeah. I have been very emotional today. If anything happened today, I would probably cry, but that's just because I'm really tired. Yeah. I was up till after three AM last night, got up at seven and I'm just I'm exhausted. I could think about something sad and I would just it would just set me off.

speaker-1: Yeah.

speaker-0: Though but this week I I'm a glutton for punishment when it comes to reels. So bad about it. But there you know, and my FYP has been built by myself and a lot of it involves you know, special needs peoples and populations and stuff. And it was a wedding and it was the the bride posted of her wedding and she was talking about her brother who has special needs and how the DJ played a song for him so he would have something to be excited about and dance to. And she was talking about how supportive all of her friends were of her little brother. Because they were all dancing around him in the middle of a circle to the Mickey Mouse Clubhouse song. And they were all just dancing with them and I just started crying. So beautiful, I know. And I'm like, I w probably wouldn't cry as much as I do if I quit watching reels on a regular basis. That's my problem.

speaker-1: Yeah. That you they but there's there are some good ones like that that you just really love seeing like little celebrations like that. Even if you don't know the people, it

speaker-0: No yep. All these strangers on the internet making me cry.

speaker-1: I know. I had mine again was just at church this morning. We did music. It's made of Yeah,

speaker-0: Music out on the piano and started crying.

speaker-1: no. We we did King of My Heart. That's a good song. I enjoy that one. And then I don't know if you know kind of where it came from because that's Sarah McMillan, John Mark McMillan's wife.

speaker-0: You don't have to give us a bunch of names. No.

speaker-1: John okay, John Mark McMillan wrote How He Loves. Okay, you know that one. Yes. Okay. So that is his song. But I've listened to him for many, many, many years. he's a great songwriter, but his wife wrote King of My Heart. And she wrote it after her parents had been married for almost 40 years and they got divorced. Ooh. Like growing up in church her whole life, like just thought, and so like she's an adult, she has her own kids, and then all of a sudden her parents like, Hey, we're getting a divorce. So that was kind of where that song came from. but for me, it's just, you know, just singing, you are good, you are good, you are good over and over and over again. I'm just like, my gosh. Sometimes I'm in the mindset of, I believe that. You know, like I'm singing it, I'm like, I believe that. Like you are good, you are good, you are good. And then there's other times where I feel like that guy in the Bible that's like, believe help my unbelief. You know, sometimes I'm singing it and I'm like, I really need you to help me believe this whenever I'm singing this right now. but I also have the advantage of when I'm leading in songs that I'm seeing people that I've known for 12 years. I know people that have lost spouses, lost, you know, or have had kids that have been, you know, gone through things or Cancer. You know, like I have all these people that I've known and we're such a small church that I know. And when they are singing and I'm seeing them, it just it gets to me. It really

speaker-0: It c it really

speaker-1: does. And then I'm so awkward because like the song's over and I'm crying and I'm like trying not to look at people. So then I just leave.

speaker-0: Mariah stormed off again too.

speaker-1: I know. I'm just like, I'm gonna go and 'cause I don't want anyone to look at me.

speaker-0: Okay, so I think it's important for everyone to stop and really think about like how each individual family and like everything that they go through and how that they choose to celebrate. Because it doesn't have to be big, it doesn't have to be expensive or loud or perfectly timed. You know, and I I think just giving what is the word? Homage. Homage. Homage. You know, even in those small moments, it doesn't have to be something big and, you know, grandiose, but just making yourself and your kid and your family have those moments I think just adds a little light to some of those days and dark you know, 'cause there's there's a lot, you know, that we deal with on a regular basis. And I think it's just those small things that just help add a little bit of hope and life into those days that are so hard.

speaker-1: It needs to be acknowledged for

speaker-0: You know, and just thinking about those things, you know, just being more cognizant of them, I think, can definitely make, you know, a difference. So we had we prompted on social media for people to tell us. because we wanted to celebrate. Because you know, like we get it. Every one of these posts and comments, I was like, my gosh. I was like, Yes, it's amazing. And so that's another good thing, like we could all do is Doesn't nef necessarily have to be on our page. Any page that you're on, let's face it, a lot of us are on something that has to do with our child specific diagnosis or any of those things. These families and these parents, they are going to get it. And I just I love so much. I'm like, I wish I knew you in person because that's so amazing. I wish I could celebrate with you. So I want to read all of them because I think they are all absolutely amazing. So the first one is from Mariah Potter. Yeah. That says Lucy raised her left arm without having to use her right arm to lift it up. And I just, you know, I cause I could picture her because I've seen her do it. Yes. And I just it made me so excited to know that she was actually able to to do that without having to have that.

speaker-1: And just I it's just so funny when she calls me in there because I'm having you know, I'm at her beck and call all day. Like, okay, what do you need? Can you give me a bag of hot Cheetos? Okay, I'll be right back. Or can I go to the bathroom? You know, whatever it is. And she and then she's like, Mommy, look at this. And it's just when she gets excited, I get excited.

speaker-0: Yeah.

speaker-1: Bet said, Mine ate a half of a can of raviol.

speaker-0: Woohoo.

speaker-1: She has been G two fed for the last six plus years. Yeah. That

speaker-0: Someone who is a tubi mom.

speaker-1: A two

speaker-0: Yes, that's amazing. Like Dawson will never eat by mouth. And that would be something that I love and wish that he could be able to do. So just knowing how exciting that was in that house, the fact that her kidda able to eat that much food, even though they say bed for so long is a big deal. Like I have awesome.

speaker-1: Not even just like a bite of it. Okay, that's all.

speaker-0: I love that so much. Yeah. So Amy said that she received, it was text that she received from her son's speech pathologist. And she said she read it to him and he just beamed and said, I'm proud of myself and I was that was something that yeah made me emotional 'cause I love when our kids are able to understand what they're doing is amazing that they're proud of themselves.

speaker-1: Well, and I love that the you know, whenever your teachers or speech patholys, pathologists, or any of your therapists like wanna make sure that you know what's going on because they know how big of a deal it is. Lacey said my five year old walked forty five minutes in her walker and that's a lot for her physically.

speaker-0: And she even attached a video and it was amazing to see. Yeah. Those great trainers are amazing. Such

speaker-1: Yeah and

speaker-0: a big deal. Because even with the assisted support like that, that's so much organization. Just the ability to, you know, to do your reciprocal hill to toe touch pattern just fluidly is not as easy as people think that it is. It is a long

speaker-1: And it's tiring. And so I know that's

speaker-0: Forty five minutes is a long time. Yeah. Yeah. Alison said the biggest celebration was getting to watch her son work at a pop up stand selling artists and creations he and his friends made together. It was literally a dream come true to watch him work and contribute because for so long I could only dream of that for him. Another huge win is that he is now calling a boy at the Rise community his best friend. For a child who has always been most comfortable in his own little world, these are spectacular milestones. Seeing him connect with peers. And find his place in a community is everything. That's awesome. That is a big deal. Especially, you know, coming from the autism world, like not all kids struggle or deal with the same things, you know, that have a diagnosis. But my son, he likes the idea of friends. He but he I mean he is not a social kid and he is fine on his own. And I know that sounds horrible. but he he's good, he's good by himself. So if he had a kid that he was like, This is my best friend because I've never heard him say that. Yeah. you know, it would be a big deal to me. So I love and can completely relate and empathize with Alice and when she said that she's able to see her son calling another boy his best friend. I love that so much. Yeah.

speaker-1: So another Allison says that her son has been going to athletics every day this year so far and only had a few issues. The other day he came to my room after athletics and I asked how it went. He just shrugged and said it was fine. we just lifted weights. Well, last year, even talking about the weight room would have had him burst into tears and freak out. For him to so nonchalantly talk about lifting weights was just really huge for her. and she didn't even think that he noticed, but That's really cool to just see from, you know, one year to a next, just a big change.

speaker-0: Yeah. Being able to be comfortable in a environment that, you know, used to freak him out so much is a big deal for a lot of our kids. Yep. Kim said, My son rode the bus today and stayed at school all day. Listen, I know how big of a deal that is. I have some friends who struggle to get their kids on the bus, who struggle for their kids to be at school all day because they get called because of behaviors and other things like that is such a big deal. And so many of us take for granted the fact that our kids are able to go to school and just stay there and participate through the whole day, but you know, for some of us that is not the reality. So I'm so excited. That is a huge milestone. Yeah. I love how she L L L I know.

speaker-1: She did all with like A L L L L L It's like all Dustin put my youngest was super happy on our latest daddy-daughter adventure. Car ads can be a bit of a challenge, but she did really well this time around.

speaker-0: So my gosh, yes. There's so many kids that do not do well in the car for whatever reason. The car can be my gosh, it can be a nightmare. I mean, I just the the screaming sometimes is just horrible. And then you can't do anything, you're just stuck with it, you know? And it's just never ending. So that's exciting that they were able to have an awesome adventure.

speaker-1: And I love that it's, you know, daddy daughter. Like it just sounds like that that's something that he tries to do, you know, yeah with with her. So that was very sweet.

speaker-0: Then Stephanie said, My seven year old participated in a group activity while I was able to enjoy watching him. This was a huge win for both of us. And I think that's something else that we don't a lot of people don't stop and think about is that when you're able to just see your kid be a kid and interact with other kids, you don't stop and think about how big of a struggle that is for so many other kids to just participate in a group with other kids. Yeah. So many of our kids are not able to do that.

speaker-1: And you not having to do anything or you know, like you're just a spectator, you're just watching

speaker-0: In that moment she was just mom.

speaker-1: Yeah, just mom getting to watch your kid, just have fun. That's great.

speaker-0: Yeah, not it so much.

speaker-1: That's like there's just so many little parks and things that we used to go to here in town, but they're it's so hard when they're not accessible and they're not, you know, so I'm just like I'm always the one caring here and going here and going there. So anytime we've ever got to like go to like accessible parks, it's so nice because you're just like, Okay, go, like go. Go do stuff and you're not having to just be like

speaker-0: Well sounds like y'all need to move to a larger city.

speaker-1: We actually have they're actually gonna build of course Lucy's thirteen, so she's, you know, a little old growing parks.

speaker-0: Old growing

speaker-1: She's outgrowing parks, but they are gonna build one here in town. They got they applied for a grant and they got grant money. And

speaker-0: That's awesome. Yeah, and how long will that take?

speaker-1: That it's gonna be a while. So they but they did ask us to kind of help it and it and I guess advice per is what maybe they're

speaker-0: Or like

speaker-1: on suggestions on what they could do, even though Lucy may not ever get to really do much with it. But I'm like we have we have a lot of kids in our town that are in wheelchairs, surprisingly. In a small it it is crazy.

speaker-0: It's easy. Well just make sure that they know there's a difference in being able to wheel right up to the playground and that's where you stop, besides get as opposed to being able to get like up on the equipment in your wheelchair. Because I got in an argument with Dawson School District. whoever is behind their Facebook. I mean, who knows? Maybe it was just AI I was arguing with. Probably Because they redid all of the elementary school playgrounds in our school district, which is a lot 'cause it's a large school district, which is, you know, great, amazing, whatever. Well, out of all of these elementaries, I think there's two that are fully accessible for people in wheelchairs to actually be able to go on the equipment. Yeah. Yeah. Dawson's school has the only medically fragile life skills. So everyone in his class is in a wheelchair. Yeah. They got a brand new huge playground. And it's not handicap accessible in the way that parents think that it should be. And I made a comment on a post about it and they s they messaged me privately talking about, it is handicap accessible. There's turf that goes all the way around the equipment and blah blah and I'm like, I'm sorry. So you want them to just wheel up there and stop and watch other kids play on the equipment without them? Yeah. I'm like, that is accessible adjacent. That is not accessible.

speaker-1: Yeah.

speaker-0: Literally they they literally wheel them out there in their wheelchairs and just park it and they still watch everyone participate because they cannot access the equipment.

speaker-1: Yeah, you're like it has to have ramps going up everywhere that makes it twice. And there's no independence either. No. Like you know, like, okay, well, I'll get you out and I'll carry you up there. But I mean, yeah, we've we've been able to go to several of that. Of course Lucy can't always push herself up ramps very easily sometimes, depending upon the grade. If the grade is is isn't very much, then she can, but but

speaker-0: Yeah.

speaker-1: But then yeah, and then going down make me a nervous wreck. We're like, but please you're two down those ramps too fast.

speaker-0: We chased a little rabbit there, but yeah, anyway. I just think it's important. I know this was a pretty of a brief episode and you know, we touched more on positive notes on this one. I think it's important to have times where we are focused more on the positive and the good things than just because there's so many things that consume us that are so hard, so frustrating, and so negative. Because I mean, that's you know, that's just reality. So I think it's just for for everyone listening, just remember that it's important to celebrate the small ones, regardless of if you think anybody will understand or relate. Do what fits for your family, do what your son or your daughter, you know, loves and appreciates. And then find a community where you can share, like with us or some your other pages where there's people that will love and be happy to celebrate with you. I do.

speaker-1: I do like my little Facebook SMA group that we have because people do post a lot on there about what their kids, you know, are able to do and and just wanting to share things and I I love it just because we get it. We understand we're great with you.

speaker-0: We can celebrate Yeah. And, you know, there it is nice to celebrate in those groups that kinda, you know, had the same diagnosis and are going through the same walk in life as other people. But, you know, for us, I'm just like I'm a parent first and I just I wanna celebrate this life with so many other people. You know, and that was the point of this podcast and this community is just for parents to come together regardless of background and diagnosis to support each other because at the end of the day we are all living You know, the same shared experience of just being the parents to our children. So

speaker-1: We're all in this together.

speaker-0: My gosh. If Darby heard she'd be like, let's go watch.

speaker-1: Musica. brain just went there. Okay. Just want to have a reminder that we can celebrate a win even if the road is still hard, even if progress is uneven, and even if other people don't understand why it matters. We'll see you next time.