Episode 1 - Welcome | Who We Are

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

speaker-1: And I'm Maria.

speaker-0: ⁓ Hey! What's up? How are you?

speaker-1: Yeah we did it!

speaker-0: Good. Sorry, that was a little weird. Yes. I'm excited. Yeah. Little nervous, a little anxious, but yeah. I know.

speaker-1: Weeks and weeks and weeks. I've been like the I feel like the first couple are gonna be kinda awkward and weird and then maybe we'll get in the groove of it, but

speaker-0: We don't ever talk to each other or anything on a regular basis. But when you know, we're trying to actually do something fun and good, it we make it awkward. So it'll be fine. ⁓ yeah, this is even if the special needs parenting podcast, we are two sisters. I have almost known you my whole life. You've never gone any part of your life without knowing me. But we are sisters, but the main thing I think really know about us is that we both are special needs parents. We both between us have special needs kids with a wide range of diagnosis and things going on, you know, between us. But ⁓ yeah, I for a while now have wanted to do a podcast. It's always kind of hovered at the back of my mind. ⁓ I don't know if you were quite there with me from the beginning on was it ⁓

speaker-1: Yeah, literally or a sibling pressure on everyone.

speaker-0: Yeah. Just you know finally got to the point of life, I think, between the two of us where we felt like, Yeah, we should we should do this. But you know, with parents and friends of, you know, other moms and dads that have kiddos like mine or not like mine, just, you know, the hard things things we go through in life and conversations, things that I've said out loud and they're like, I'm not the only one who thinks that way. So it's just been one of those things where I'm like, this is this is needed. Like you know, to have these conversations that a lot of people and parents think about that aren't always said out loud. ⁓ and not just like a niche. I feel like there's a lot of amazing podcasts out there, but they're more niche based on like diagnosis, ⁓ as opposed to just general overall things that, you know, we as parents go through. So I feel like that's one thing that makes, you know. having these conversations important. And it's not just for parents, you know, it's for grandparents. It's for, you know, older siblings of kids. It's for ⁓ teachers or ⁓ you know, anyone who also wants insight, you know, that sees, you know, the special needs world adjacent, but still wants to kind of understand, you know, what it is that we go through. So, ⁓ that was, you know, that kinda is what has led me to really feel strongly about yeah doing this.

speaker-1: And then just having our faith and our beliefs tied to, you know, all the things that go on from day to day with and

speaker-0: Yeah. Our kids. Yeah. Yeah. Yeah. It's yeah. It's a it's an interesting life, but it's it's definitely a hard life. so I definitely think it's important to talk about, you know, all those those struggles, those stories, the things that make people not feel alone, but you know, also have guests on other other parents or even professionals that are able to talk about, you know, specific topics that, you know, we might not have all the info on, but you know. ⁓ we're able to hear it from people that really understand and can give more insight. I don't know if there's anyone that's not affected by someone that they know in their life that has, you know, someone or knows someone that has kids with some sort of diagnosis or special needs. So ⁓ the name I know we it took forever to come up with the name. I think we were back and forth on a lot for a while. ⁓ but I I mean I like it. I like the name. I think even if can be very thought provoking ⁓ at the end of the day. You know, ⁓ there's lots of lots of things tied to it. You know, you look at, you know, chasing hope, choosing love, you know, your position in life, regardless of what's going on. For example, you know, even if our child never dot dot dot, or even if life doesn't look like we planned and even if the hard days, you know, we're still here, we still love, we still laugh, you know, we keep going. So ⁓ that's kinda I feel like how we kinda organically came up with the name even though we were like back and forth for a while with all these different options.

speaker-1: But it's hard because like when you do look it up, you know, there are other podcasts that have that name, the even if name. ⁓ not that I, you know, I didn't listen to any of them or anything like that. But I do think having the the special needs parenting podcast tagged onto it, that's definitely makes it a little bit more original.

speaker-0: Yeah. Right. Well you can definitely see where it's coming from when you think about it with that lens tied to it as well. Yes. But yeah, I mean, I guess we need to like, you know, let let y'all know a little bit about us, kind of each of our stories and kind of where we've come from, you know, in life to this point. ⁓ there's we each have three kids. ⁓ we're flip flopped. You have two girls and a boy, and I have two boys and a girl. So our our your oldest in my middle are the same. ⁓ age, same grade. But yeah. My oldest son, ⁓ he is eighteen. He is on the autism spectrum, was diagnosed at three. ⁓ come a long way with him. He has definitely made leaps and bounds compared, you know, to when he was a toddler and when he was diagnosed behaviors and, you know, so many things that we went through with him and ⁓ that's been just amazing to look back on just to see how far he's come. Yeah. ⁓ so But he's yeah, he's eighteen. My middle and and your oldest are gosh, they're gonna be sophomores. I cannot believe that. I know.

speaker-1: So old fifteen. Ellie's old Which your driving scenario is a lot more ⁓ scary than my or my kid's driving.

speaker-0: ⁓ Definitely. Yes. I am in a suburb outside of Houston, very highly trafficked, and it's not like growing up like we did where the day you turn sixteen you got your driver's license and you're driving everywhere because you know, when you have a a town that doesn't even have a stoplight, you don't really worry about a whole lot of traffic. Which is the same for me level, I know.

speaker-1: Yeah. Because it doesn't dress. ⁓ It's fine. We we do have one stop light, ⁓ but that's you know, that's irrelevant. But it's small towns, it's the way to go.

speaker-0: I mean they're probably necessary. You want teenagers to be able to stop. Yeah, we had to drive what fifteen miles to the the next town over to even practice stoplights because we didn't have one growing up. Yeah. So so crazy. But yeah. And then our other babies, ⁓ yeah, my daughter's the middle child, and that brings a whole new level of whatever in the the midst of being between two special needs brothers. I mean, that is definitely, you know. A topic of conversation down the road to, you know, talk about the siblings of kids ⁓ with special needs because she's definitely been through some things and then ⁓ my youngest, he has cerebral palsy and all the rigmaro that comes with that, traumatic brain injury at birth, ⁓ nonverbal, he's legally blind with ⁓ cortical visual impairment, nonambulatory, G tube fed, seizure disorder, just all the things, lots of Medical intervention and you know, things that we have just gone through over his short eleven years of life, but we it's been a lot. So so thankful that he's here. It has been a lot. It's been a lot for you too though. Yeah.

speaker-1: man. I know. It's been I and it's the same. It's like eleven years for both of us really.

speaker-0: Yeah of

speaker-1: Him since he was born and then eleven years since we got Lucy's diagnosis. So

speaker-0: I know. It was it was like right after he was born, yeah. I remember that day well.

speaker-1: Yeah, on g on your birthday, no less. I know.

speaker-0: I know. Diagnosis day on my birthday. Sorry. Well, and your kiddos.

speaker-1: And then yeah. Ellie and Darby the same age. And then Lucy's 12, almost 13, because she's 13 next month. And I know. And then we got her diagnosis ⁓ March 19th, 2015 of spinomuscular atrophy, type two. And that was just, you know, one of those things where you never heard of anything like that before. And then it's always funny, like be f when the doctors are like.

speaker-0: No, I can't believe it. And

speaker-1: We think it might be this, but you obviously have to do genetic testing to see. And it's like don't really look anything up. Like don't go research. You're like, yeah, so like what they tell you and you're like, well, that's great, you know, and then you immediately leave the doctor's office and Google, ⁓ you know, what is SMA? Yeah. Yeah. And all the things that during that time frame, especially, because there was no treatment and ⁓ you know, thankfully we were able to get her in that drug trial. After she turned two and you know, but then it's just been all these years of going to ⁓ we go to children's hospital Colorado for every four months to get treatment to get treatment, and then we have Lincoln, our third one that's nine, and the same thing. He was born, had him tested, and then spotomuscular atrophy type two. So but his little situation.

speaker-0: Lovely genes in our family. ⁓ yeah. Yeah I'm a yeah, yeah, because I'm a carrier of it. So it's it's it's in there somewhere.

speaker-1: Yeah. And that really was the first time we had heard of it was when you had said of course we were still ⁓ what year was that? I guess was that?

speaker-0: Yeah. It was when I was pregnant with Dawson, because my OB actually tested for it and a lot don't in utero. Well, didn't then. I think a lot more do now. But she was like, You're a carrier for this. And I was like, I've had two other kids. What are you talking about? And then she was like, ⁓ we'll just test your husband. If he's not a carrier, no big deal. And so I never even thought about it again until you told me that about Lucy. And I was like, ⁓ Yeah. But I sweat that.

speaker-1: I do remember you telling me that you were a carrier because that was that really was the first time we had heard of it, but then never thought about it again because like you said, Zach was considered

speaker-0: It was it was irrelevant at that time. Yeah.

speaker-1: But and then it's, you know with Lincoln, you know, Lucy, she's, you know, been in a wheelchair and and we have standing frames and we have all the you know, she's already had a ma you know, a back surgery for her scoliosis and gonna have another one this summer. Lincoln getting treatment at a month old just looks complete. ⁓ than for this crazy ages.

speaker-0: And then Yeah, he is he is a miracle, that is for sure. Just watching him do all the things that he does. But you know, that's that's his whole life. That's the rest of his life forever.

speaker-1: Yes. Well and you know, we want he went to MDA camp and we we really wanted him to go just because you know, something for him and Lucy to do together, but then we told him we were like, We never want you to forget I don't know, he's nine. It's so hard to put like try to talk to them this way. And I'm like, I don't ever want you I w I don't want you to take for granted the things that you are capable of because I don't want to because you you ⁓

speaker-0: Yeah. Right. ⁓

speaker-1: like your sister, you should be like other kids and thankfully ⁓ we're able to get treatment and

speaker-0: Yeah.

speaker-1: But that's

speaker-0: kind of pros and cons of the, you know, medicine world, but that is definitely one hundred percent one of the biggest pros that could, you know, ever exist is that drug that yes they created. So it's amazing. Yeah, it's definitely been a journey, I think, for the both of us. Just the ups and downs, the highs and lows, and not even like the medical intervention side of things, being in hospitals, just, you know, the things that come with it. Having to make the decisions and then the sleepless nights and The hard days and emotions and feeling like, you know, you're alone or you don't have friends or you know what, like it's it is definitely not a it is a good life, but it is definitely not one without struggles, for sure.

speaker-1: Yeah. Yeah.

speaker-0: That is it's I mean, I've learned a lot, ⁓ you know, things and I never thought I would learn, things I've never thought I would, you know, experience at this point in life. Because, you know, when you get married and you start playing a family, this is not what you think about. No. No, not always. You don't automatically think, yeah. Well, and you know, now I'm like, anytime anyone has a baby, they automatically increase their chance of having a kid with special needs. That's just going to be part you know, a fact of life the second you get pregnant, the second you have kids. Because there's so many things that could go wrong, so many diagnoses, so many, you know, options out there. So it's definitely something I think when you're young, I know I did. I took it for granted. I'm like, ⁓ having kids, having a baby, you know, raise them. Grow up, they'll, you know, move out of the house. They'll go on to their thing. I'll be have an empty nest and that's I will never have an empty nest. That is not that is not in my, you know. Yeah. future. So Dawson will be with us forever. So ⁓ you know, I've learned about, you know, don't not don't take things for granted. I've learned that it's easy to find real friends via, you know, what is it? Fair weather friends over real friends. You know, some that kind of just slowly phased out of my life. And it wasn't because I didn't want them to be in my life. It was because I was, you know, I'm so consumed by taking care of this child that you know, friendships are two sided. You know, you both have to give and take and, you know, when I feel like I'm the o I'm w not giving, you know, at the same time, I I don't blame people for kinda distancing themselves 'cause I can't give them you know, what I used to be able to give in friendships.

speaker-1: They don't understand and they're not re they don't relate and so I am glad that you're where you're at and in the church you're at and just where you're able to have more people that it seems like are more understanding your situation. Yeah.

speaker-0: that well I think it's important to find your people, you know, and it's not an easy process for anyone, you know, going through what we all go through to find, you know, the people that can relate and, you know, and that's something I think it definitely needs to be talked about is family dynamics. You know, not all families are supportive. Not all like we have a supportive family and that's that's rare, you know. Yeah. ⁓ it's it's yeah, it's a hard It's a hard life and situation to navigate. You know, one thing that, you know, I've learned is not comparing not not comparing my kids to just I don't want to say typical, but you know what I mean. Typical kids. It's the same as not even comparing to kids with special needs the same or other families and people with you know, it's across the board. Like I'm bad about doing that. I don't compare Dawson to typical kids. I compare him to other kids with C P. I'm like, ⁓ yeah. Well they're able to Hold his head up. They they're able to sit unassisted. They're you know what I'm saying? Like I'm like, I can't do that. Like 'cause it's not fair to him. And then it just you know, comparison is definitely a thief of joy. ⁓ it is. And it just you know, it can suck it out of you completely.

speaker-1: bad about like if I do start comparing then I start getting down on myself because I feel like maybe I'm not doing enough help with something you know like well well they're you know their legs are stronger than Lucy's or you know whatever it may be and is it because I don't stand her up as often as I need to or I'm not stretching her as much as I need to is it my fault that maybe she you know isn't where she might could be I don't know or maybe she it wouldn't matter.

speaker-0: Yeah. You never Yeah. Well, and also, you know, if if we only knew then what we know now. Like I wish there was things I knew about autism back when Deacon was first diagnosed. That 15 years later, looking back, I'm like, I wish I knew this. I would have done this. I would have done that. You know, just so many things over the years that you you learn and you you, you know, process things differently that I'm like, man, if I could just go back and have done this different.

speaker-1: Yeah. Why what it could be.

speaker-0: you know, it could have changed the ball game down the road. But you know, again, that's you know, that kinda ties back to the the title of the podcast that, you know, even if we we know now what we know, it it would you know, we can't go back and make a difference. So ⁓ you know, keep moving forward. Keep moving forward. So but yeah, I've I've learned having a sense of humor is one of the most important things when it comes to navigating this life. I'm like, I just yeah, 'cause if not, you know, you can definitely get down on

speaker-1: Always says, if I'm not laughing I'm crying, so just gonna have to

speaker-0: You can just kinda My favorite my favorite story is ⁓ it's not a story. It was that conversation we had on ⁓ Instagram when you were talking about that one time at church that Lucy fell out of the pew when she was sitting there and what was it you said? You were like, Well she what was it you said? I didn't something about how well and I was like, Was she hurt or something? And you were like, No, but I mean ⁓ yeah, she can't walk anymore. Yeah. Yeah, she can't walk anymore. Yeah, she never can walk.

speaker-1: Yeah. ⁓ Yeah. She never could walk, but she can't walk now. So no. But it was just funny because like he literally was sitting beside her. I'm on the stage. I see her fall off. He has no like recognition that she's even fallen. I've seen her and I'm like in the middle of singing and then I I do this and I cover my, you know, mouth and I'm just like and then finally he sees her and p and she's okay, but yeah. But then you just have to have that dark you gotta have that dark humor sometimes of like, ⁓ she can't walk. So

speaker-0: The hook. I mean I guess she's kinda boneless. So, you know, she kinda just slinks off and folded into the In the

speaker-1: Bathtub the other day. I'm going to get her out. And she literally has both of her feet up here on her cheeks. And she's just slapping her face with her feet. Yes. And then she just starts laughing. And then she's just dying laughing. And we're just I'm just like, Lucy. And then and then I have such a hard time getting her out of the bathtub, anyways. But then when she's laughing, she like is even floppier. Yeah.

speaker-0: Yeah.

speaker-1: than she already is to begin with. And I'm just like, I cannot get you out of this battle.

speaker-0: Per cup. Love her sense of humor. That's a that's a fun party trick. ⁓ my gosh. You can do that at the school talent show. No one else can do that. I can't do that.

speaker-1: She I she should. I'm gonna be like, Can y'all do this? No, you can't.

speaker-0: Yeah. Yeah, moving forward, I think, ⁓ you know, we're gonna do this every week. Talk about a different topic, a different situation, scenario things that, you know, we all deal with. ⁓ you know, things like marriage, ⁓ the strain that it puts on relationships and you know, even also being a single parent, because there are a lot of marriages that don't work, and there's a lot of single parents out there that are, you know, navigating this life on their own, you know. We talked earlier about siblings of special needs kids, hospitals. I mean, yes, there's I had a f I have a friend that she has a daughter with some special needs and she doesn't have the medical side of things, but she has more of the severe behavior side of things. And we were talking about how, you know, we're walking this road of special needs parenting together, but our journey is still completely different because she can't relate to what it's like to constantly be having to, you know, administer medical care and it. the hospital all the time. Then I can't understand, you know, having a fifteen year old with severe behaviors where, you know, they get aggressive and they can get violent. And, you know, things like that. So I definitely think it's important to cover every aspect of every possible, you know, even if something that you and I aren't walking. That's that's why I'm excited to have other parents come on and and talk about it. Because it's just important to hear, you know, from these people that are dealing with it on a regular basis to know that, you know, We're not alone, but we're st even though we're different, we're still the same, you know. In our our journeys with our kids. ⁓ parent health, that is a big one. ⁓ because we put our kids first. You know, our health gets put on the back burner. ⁓ you know, we can get sick too, we can get cancer, we can get, you know, we can have all these things happen. And, you know, the more complex your kid is, I think the more we're able to just completely ignore our own health and our own, you know, well being because, you know, that's what we do as parents. We put our kids before everything. ⁓ burnout for sure. That's definitely one to talk about. ⁓ faith. Some people, you know, their faith is what gets them through and then others, you know, lack of faith. ⁓ you know, there's I have good friends that struggle with faith because they're like, Why, you know, why was my kid made this way? So, you know, and, you know, can't fault them for for thinking that because it it is it is a hard thing to wrap our our brains around sometimes. So definitely all the things, you know, to talk about moving forward. So I'm excited to Yeah. I mean I don't think we can ever run out of topics because there is so many things that day today. Yeah. Some even

speaker-1: I don't think so. No, but I was thinking like like to cause there's names that we'll say and I'm just like, okay, maybe we need to mention, you know, your husband's name is Zach, my husband's name is Byron. I know I've already said my husband's name and I'm like, ⁓ yeah. Already like, who's this guy?

speaker-0: Yeah, I just call him my husband. Yes. Our husbands are yours is Byron. Mine is Zach. My kids are Deacon, Darby and Dawson. I did all these. ⁓ Yeah. And you know, that's not confusing at all and I'm trying to yell at ⁓ and then enter the room.

speaker-1: Anyway.

speaker-0: Yeah, I think, you know, moving forward, this was just kind of our intro podcast to get to know us, kind of get to know our our kids and where we're coming from and kind of, you know, the things we want to talk about and our heart and you know, stuff like that moving forward. But ⁓ yeah, I think the main thing moving forward in each episode is to just consistently think about your even if, you know, what's something that today you're choosing to believe, you know, to believe in, to have hope for, to hold on to. ⁓ 'cause obviously, you know, this life we're living is not the life that we expected it to be, but there's still, you know, there's still good that comes from it. So in all the grief, all the sorrow, all the you know, all the all the hard days, there's still there's still good that comes from everything.