Rhandyl:

 Hey, it's Rhandyl and today we have Danielle Rose with us. She lives in Lubbock where Deonna and I live. And I first met Danielle in 2019 when I joined a local gym and she's a coach there and she helped enroll me and show me the ropes. And I told her about my situation with my daughter and my desire for exercise and the importance of it for my mental health and not only my physical health. And she was always so supportive of me throughout my fitness journey. And over the past few years, I was a bystander to Danielle's engagement, her marriage, pregnancy.. We've kept in touch for the last few years, and even though we don't see each other as often I definitely admire her for a lot of reasons.

Deonna:

Okay, so Danielle tell us about you your family careers just like whatever you want to tell us..

Danielle:

Okay, so hi, thank you guys for having me on the podcast. I'm super excited to be able to talk with you guys and share our story. We haven't really gotten to but I'm Danielle and like Rhandyl said both my husband and Brayden and I are from Lubbock. We've been married for four and a half years now. He is a sales manager for a family car dealership here in town. And then I currently am a stay at home mom. But I do a little bit of coaching still just to kinda keep me sane. Mm-hmm. Just to get outta the house. Get outta the house for a couple hours. Get outta. Yep. So I am still coaching a little bit so that's still nice. But that's, that's what I do, so nothing super crazy.

Rhandyl:

So when and how did you found out about your child's medical diagnosis? 

Danielle:

So it's actually kind of a long story, which is, I feel like, pretty common for anyone who's raising disabled. Right, yeah. But so I actually had no idea that anything was wrong until I was about 25 weeks pregnant. Oh, wow. Yeah, so, that was a pretty huge shock for us. We actually went into our 20 week anatomy scan, just like normal, for a normal pregnancy. Mm hmm. They do all the scans and check all the, whatever they check at that appointment.

Rhandyl:

Everything. It’s the longest ultrasound ever. Yeah. It takes forever.

Deonna:

 I don't even remember. Like..

Danielle:

So it was that appointment. We actually didn't find anything out at that appointment. You know, they finish doing the scan and the ultrasound tech that's in there, she says, if there's anything of concern that she'll get the doctor to bring them in and go over anything at that point. So we were like, okay, well, the doctor never came in for that first appointment. So we're like, okay, everything must be fine. Like there's no issues. But then she walks us out and we have to schedule a follow up appointment. And she just called it a “growth check.” So we were like, okay, we'll just have to see, like he's either too big or too small or whatever. They just acted like it was a routine. Yeah, it was like no big deal. So I think they scheduled that, It was like four or five weeks after that appointment. So it was actually that appointment, that follow up appointment, when we found something wasn't right. Again, we do the whole, the whole anatomy scan again. They redo the whole thing. And, 

Rhandyl:

And you guys are just assuming this is like routine? Because this is your first pregnancy, right?

Deonna:

First pregnancy, like regular ultrasound. Yeah. Like no reason to be thinking..

Danielle:

Yea, had no idea, just a growth check. But yeah. And so we go through the whole scan, but we realized this one was a lot longer than the first one. So it was kind of like, we started questioning, well, why is it taking so long? Why is she looking at this longer than the other parts of the body or whatever? And so she finishes the scan and she says, we'll get the doctor again if there's anything to go over. Well, it feels like an eternity. I mean, we sat there what felt like probably 30 minutes until the doctor ended up coming in.

And as soon as he walked in the door. It was just like, you, you, my heart totally sank because it's like at that point, you know something's wrong. You don't know what it is, but something was wrong at that point. And then at that point when he came in, I didn't hear anything I don't think. I pretty much blacked out just because I was just in shock of anything being wrong. All right. Because at that point I thought everything was totally fine. He was healthy, like there was nothing wrong. 

Deonna:

Well, and this is your first pregnancy, so that's what we all think, in our first pregnancies.

Danielle:

Right. So he is talking, pretty much all that I heard at that point was that they measured his brain, in a part of his brain which is the cerebellum they measure that I guess in every anatomy scan and his was extremely small for the point in pregnancy that I was at. Right. And again, at that point I didn't really hear much else that he said. Braden was asking questions and all of that, and I think we probably talked back and forth for about 20 minutes and he didn't really give us any information on a diagnosis or anything at that point. 

He just said, we know something's wrong. We're going to continue to check the growth throughout the remainder of your pregnancy. And then he referred us to specialists and all of that. So really we left knowing that something was wrong with his brain, but we didn't know what and why and how and all of that. So that was a pretty hard day. I remember it so vividly. Yeah. But yeah, so that's kind of how we found out that just something was wrong in the first place. So that was about 25- ish weeks pregnant.

Deonna:

Okay. So walk us through what those first few moments or days were like after receiving the actual diagnosis or after this event occurred, like how'd that feel? And just, you know, tell us about that…

Danielle:

So those first few moments, days, and honestly, really just the remainder of my pregnancy. I mean, I was right halfway, still had halfway to go..

Rhandyl:

Because he didn't really have, he didn't really have a diagnosis. You guys didn't, all you knew is that there was like a brain abnormality, potentially?

Danielle:

Right. Yeah. So just that day, that first day that we found out that there was an issue with his brain that was like, that was probably the hardest day just because up until that point, like you start seeing and visioning all of these things for a child. And then at that point, everything is completely changed.

Just because you know something is wrong with the brain, no matter how severe it is or not. There was definitely going to be something wrong. Yeah. But I just remember so vividly being in that office, scheduling the appointment, and then walking all the way to the doors. And as soon as those doors opened, I like, broke down.

Like, You're just trying to hold everything in and not get emotional and all the things because you don't want to cause a scene around all these pregnant women that are yeah down in the office and you know.. So I literally as soon as I opened the doors, I remember the sun it was like warm outside, but I remember the sun hitting me and it was like immediate. I just started crying and just hysterical. Yeah, I just didn't know what to think and..

Rhandyl:

That's heavy news like…

Danielle:

Yeah! So that was really really hard.

Deonna:

I hate it when you feel like you have to hold it together because everybody's going to see you crying and like, I guess I don't really care anymore, but I mean, you know, it's just, I hate that feeling. It's terrible. 

Danielle:

And yeah, I just remember that was like the start of like my mourning process, so to say, I guess, just because, I mean, like I said, at that point you're literally seeing and envisioning your life with, a child and we knew it was a boy. So we were like talking about sports and like all these things. And so that's what we had in our minds so..

Deonna:

It's a grief.

Danielle:

Knowing that we weren't going to have a quote unquote normal child, that was pretty hard to do. But but really, so the last half of my pregnancy, it was, it was rough. I mean, just not knowing exactly, like, what to expect, and we had to wait a while until we actually got a diagnosis and kind of have more of an idea on what to expect when he was born, and all this stuff, so it was just hard, cause we were just trying to figure out, like, where do we go from here, like, how do we figure out like what's next and..

Rhandyl:

Yea, you have all these weeks left of your pregnancy that you don’t know..

Deonna:

Yeah And so I was gonna ask like how open were you with everybody? Because did you have to go to this baby shower and all these things acting like you're excited and all like it's all good you know?

Danielle:

Exactly, and that was probably the hardest part cuz I was still coaching at this point. So I was still seeing people every day Mm hmm. I mean obviously I was pregnant so people would ask like how I was doing and like when I was due and about baby names and like all the stuff and internally, like I didn't have it in me to explain what was going on. Yeah, and so I just put on a happy face and just said like everything is great, I mean..

Rhandyl:

So I'll be honest and this is the first time I've actually told Danielle this, but I remember towards the end of your pregnancy I know I would always talk to you about, you know, the normal pregnancy things, because I had recently had my son, I had just recently been through a pregnancy, but I remember like once you got further along in your pregnancy I don't know, I think the Lord just laid something on.. I just like I thought about you constantly like I just I don't, it's not like I knew there was something, I mean, I prayed and thought about you constantly, and, then after you had him and reached out to me, I was like, Oh my gosh! And I would just like, want to give you like the longest hug ever every time I saw you in the gym, I just, I don't know. I just had this, not that I thought that there was something wrong with your, with your baby, but I could just tell, like, I don't know, the Lord just, like, I just prayed and prayed and thought about you guys a lot during that time.

Deonna:

When you're going through this sadness, that you, you know, that’s tough.

Rhandyl:

And then you're not sharing it like that, you're holding it..

Danielle:

Yeah. And I remember you reaching out to me, I think this was... While I was still pregnant, there's the time frame kind of blurs together, but I think I was still pregnant at this time, but you, I believe, reached out to me for my address, because you wanted to send me some stuff, and one of the books that you sent me is one of my most cherished books, because it was so special, because you didn't even know at that point anything was wrong, which was pretty cool.

Deonna:

I wanna know what book it was. Like a baby book? 

Danielle:

It's, no, I think it's God.. I was telling myself I wasn't gonna cry. 

Deonna:

Hey, it's all good.

Danielle:

I'd have to look up the title, but it's like, God..

Rhandyl:

God made you special?

Danielle:

God Made You Special, that was it.

Deonna:

Oh my gosh, that’s cool.

Rhandyl:

Oh wow! That’s one of my favorite books, too. That's cool. Oh, wow.

Danielle:

Yeah. Isn't that crazy? That you don't even know. Yeah. And I, I remember getting that in, in the mail and was like, wow. Whoa. Like, how crazy is that? And I think I texted you after and that's whenever I told you kind of everything that was going on, but, yeah. 

Deonna:

Well, and people might wonder sometimes, like, why someone doesn't tell when they're going through something hard, but we know why you don't always do that because then you have to talk about it. Then you have to explain and you're still so shaky, and not right, and then you're having to constantly be answering to people and it's exhausting. And so, I totally understand why you, but I just , I feel for you because you had to go through some of this. Yeah. You know, in secret and that's so hard to do. 

Danielle:

And, and at that point, you know, that's supposed to be like where you're getting excited. Mm-hmm. yeah. The end, that's like the fun part of your pregnancy and getting ready for all of the new things that are to come. But at that point, like I was so..

Rhandyl, Danielle, Deonna:

I was scared. Oh yeah. Just because Yeah. The unknown. We didn't know. 

Rhandyl:

That's what I was gonna ask. Was there part of you that's like, It's just an ultrasound, they could be wrong? They were still, you had hope that that..

Danielle:

100% absolutely. That was the whole time you just think , it was just, they, they measured it wrong. He's just growing slow. It'll catch back up and everything will be fine. We prayed and prayed and prayed and prayed yeah, about all of that. But 

Deonna:

We've all hoped doctors are wrong when they're not, but you want them to be so bad. 

Danielle:

But there's always that small part of you that just hopes that that that they were wrong and that everything would be fine. 

Rhandyl:

So at this point you don't have a diagnosis, but when was the diagnosis given to you by the medical team?

Danielle:

So after that follow up appointment, they referred me to a doctor in Amarillo. They wanted to do an MRI. So there's the machine in Amarillo is safe for pregnant women. So they did an MRI of his brain and that's when we got a better idea of what we were gonna be dealing with when he arrived. Because I was still pregnant, they couldn't give me an official diagnosis, but that scan the doctor said she just told us, it looks like what she called microcephaly. Right. Which he does have, but that's not his main diagnosis. We'll find that out later on, but so that's what she told us at that appointment. So…

Deonna: 

Is that like the entire brain is too small? 

Danielle:

Yes, correct. Yeah. Yeah. So that's what she told us. She said, I can't give you really anymore information other than that's what it looks like to me and what to expect later because I just look at in utero. So she doesn’t know anything like, like what to expect as far as development.

Danielle, Deonna, Rhandyl:

Yeah. Oh, yeah, right. So that makes sense. And those were the questions that we had. Of course. We wanted to know, we wanted to prepare as best that we could before he got here. That's the important things to know. So and she couldn't give us any of those answers. She said just if you were willing to look it up, look it up, and then you can kind of find your own information from there, pretty much.

Rhandyl and Deonna:

Google, yeah. Google's so fun. 

Rhandyl:

I don't know. I don't know. I've always wondered, like, if I, because I get questioned a lot. Right. You know, if, did you know anything in utero? Yeah. Like, we didn't, you know, if you've heard my story. Yeah. You know so I've always wondered, like. I mean, I guess now from your, you were kind of forewarned, do you think it would make a difference whether you knew or not?

Danielle?

You know, I've thought about that and I think it helped me once he was born. It was still hard for the first couple of months, but I feel like my mourning process began sooner. So I was able to enjoy him being here sooner. If that makes sense. No, I guess yeah, and because I've heard that and people have asked me like if I didn't know If that would have been better, but I mean we were able to prepare a little bit not a lot yeah, because we still didn't know exactly what to expect, but I think the mourning process of what my life could have been started sooner so that way I was more prepared when he actually arrived.

Rhandyl:

You weren't postpartum and shocked at the same time?

Deonna:

That's yeah, that’s tough.

Danielle:

Yes, which postpartum was a whole different story. Yeah, we'll get into that but

Deonna:

So once he's born, does that, is that when they kind of could tell you a little bit more about what was going to happen? 

Danielle:

Yes and no. So when we actually went in to have him the NICU team came in that night cause I went in the night before to be induced. And the NICU team came in, it was the doctor. He came in and pretty much just told us to expect the NICU team to take him pretty much as soon as he's born. They were anticipating that he wasn't going to be breathing on his own. That his heart rate might not be how it should be. All these things. And so that's not really the thing that you want to hear when you're literally about to give birth.

Deonna:

Was he full term? He went the whole time?

Danielle:

Yes, I went.. I, that was like a huge request of mine to make sure I went full term. Yeah. I really wanted to go into labor naturally, but they wouldn't allow me just because of the complications. Which is fine, but I said I will not go any earlier than 40 weeks. Yeah. So I went in 40 weeks and I had him 40 weeks in a day. Man. So but yeah, so they prepared us for pretty much worst case scenario once he was born. Thankfully everything, he was great. We, I had him and he was breathing on his own, keeping his oxygen levels, heart rate was great. So I actually got to do skin to skin with him right after which was really cool, cause I wasn't anticipating that. But we got to. Probably for at least like 30 minutes, which was like huge. Yeah. 

But then they took him and they still took him down to NICU and Got him hooked up and did whatever they did with him because I wasn't there obviously. And I didn't see him, I don't think until like hours later, right?

Deonna:

Like was he having vitals issues when he was born? 

Danielle:

No, not at that point. 

Deonna:

Oh, so he was already like proving ‘em wrong.

Danielle:

Yeah, he was totally doing great. His oxygen was fine. Heart rate. Everything was good. That’s wild! There was, there were no issues at that point. Right. And he actually didn't even have to stay in the NICU that night, he stayed with us that night, which was pretty cool too.

So that was like the NICU part we, he stayed with us that night. Well, then he started having feeding issues. So that was like the biggest thing is he wasn't eating. Yeah. And then it was probably that next day. Was really scary actually. We were working on trying to get him to, to eat and he ended up aspirating.. Oh, no. ..while we were doing that. And so we had, I had lactation in there and my mom and the nurse were all in there and he aspirated and turned totally blue.. 

Deonna:

That's the worst feeling in the world. 

Danielle:

Which I didn't see. But my mom, I saw her face and she was in sheer panic and so they took him from me. I don't even know what they did, but they got him to recover and at that point the nurse came back and was like, we're taking him back down to NICU because he's having issues swallowing. Something's not right. So they took him back down to NICU, hooked him up, put an NG tube in. 

Danielle, Deonna, Rhandyl:

Yea. Which is the, the nose. The nose thing? Yeah, the nose. 

Danielle:

He stayed in NICU and stayed in there for, I think he was in there for like 9 or 10 days because of the feeding issues and then NICU team actually sent in, which this is like the scariest part of the whole NICU stay was the hospice team came in, two of the hospice doctors came in. And I knew both of them, which is kind of crazy. Oh, wow. Both from Orange Theory, actually, so it was just a crazy. Oh, weird. Crazy moment. They both walk in and I was like, I know both of you guys and I don't like that you're here right now but they just were explaining to me kind of leaving the hospital kind of what to expect and they just told me like palliative care is for children, not for like end of life care, which still is not fun sounding. No. But so they talked to all about kind of what to expect and how they were to going to assist once we got home and all that stuff.

And the hardest part about the whole conversation was one of those doctors actually said, because we don't have a diagnosis and we don't know exactly what to expect. The reason we want to assist you is just because he could be here for years and be strong and healthy, or he could only make it to six months. So we don't really know kind of what to expect. And at that point, no one had given me like a time frame. So that was like the hardest thing that I had heard up to that point, just cause it's like. He's here and he's breathing and doing so good, but then you have someone come in telling you that he could only make it to six months and that was really hard.

Yeah so, but he's doing good. He's great right now, so that's good. But after that they sent us home, feeding tube, all the things. He actually was put on oxygen after that. Now when was his birth date? January 6th of 2022. No, excuse me, January 5th. My husband says the 6th. I get them confused too much. So January of 2022. 

So yeah, we get home, get everything set up, and they put him on oxygen because he started having issues. Right. But anyways we're going through all that for like three ish months. And that's when we started seeing seizures happen, which is like one of the biggest things with his diagnosis. So then we had to go see the neurologist. And at that point, once we got his first EEG, that neurologist gave us an official diagnosis of lissencephaly, which is his primary diagnosis. 

Deonna:

And what's the difference between that and microcephaly? 

Danielle:

So listen lissencephaly. It, it means smooth brain. So there's folds in the brain that make it look wrinkly. Right. And he has an absence of folds. So there's not as much surface area for the brain to make connections with the body. So that's where the difference is between that, but he also has microcephaly as well, being just a small head. Right. So those are like his two main diagnoses. Right. That he has.

Rhandyl:

Okay. So, I mean, I feel like we all handle all these things that people tell us, these diagnoses all these what ifs and but how did you handle the stress? How did you handle the stress of it all? Did you have family? Just how did you handle the whole thing? 

Danielle:

So, definitely our family was like the, the biggest part of handling the initial learning that he had something wrong when I was still pregnant and then all the way up until now.

Rhandyl:

I was gonna ask at least your family, immediate family knew?

Danielle:

Yeah. Yeah. Yeah, so all of our family knew and they were supportive and just tried to keep us as positive as we could because when you're in that situation you want to look at the negatives and ll the things that you're missing out on and yeah all that stuff. So they would try to keep us Looking at the positives and how God's going to work through the story of Barron and not worry about what our plans were, for what we thought would be better for us, you know? So our family definitely was like first and foremost. And then Brayden I mean, as cliche as it is, he was like the person that kept both of us together. Definitely when we were having a hard time just processing everything. But, yeah the family has been a huge, huge blessing for us, especially with having them in Lubbock to be right with us. 

Deonna:

Can they watch him? You know, do they feel confident doing that?

Danielle:

For the most part, yes. Yeah. Now there's times when if he's like having different issues at certain days that. I know, like, I, I'm not going to send him with somebody if he's having certain issues. Yeah. But for the most part, everybody's good. 

Deonna:

That's nice for y'all's sanity to know I can, like, leave him with grandma and go out and do something or, you know, whatever. That's good. 

So, what were, you know, back then, which this wasn't that long ago, you know, or what are the hardest parts of caring for a child that has a diagnosis or illness like this? 

Danielle:

So with Barron honestly his medical issues really, at this point, aren't, aren't super crazy and they're pretty easy to manage. Like I said earlier, seizures are one of the biggest issues with lissencephaly. But we've been able to control those with medication, which has been a huge blessing in itself. Just because typically, lissencephaly kids have seizure issues and medicine doesn't control them. Oh. So, we have been very, very lucky that That's wonderful.

We have been seizure free now for over a year. I mean, he's only 18 months old. Wow. Wow. Yeah. And we haven't upped the dosage or anything, which is, that’s a good sign. It's, it's crazy just to think about how blessed we've been with that. Yeah so, just watching for those, but he's fully G-tube fed; he doesn't take anything by mouth, so. Right. Just keeping up with his, his feeds, honestly, is the hardest part. Yeah. And that's not even hard. 

Rhandyl:

He has a G button like both Allie and Remi. So, yeah, he's on the feeding schedule. 

Danielle:

Yeah, and so we just have to keep up with that, and he does night feeds, so he does that, and then eats three times during the day, and really that's pretty much it. The other issue that we have right now is he can't swallow. He doesn't have the coordination to swallow. He can, but just not very well. Which is why he had the aspiration issue when he was born. And he still has that issue. So we're teething right now so he has a lot of saliva that he is trying to swallow. So it makes it hard because he'll choke and gag himself and sometimes he'll spit up and then there's a higher risk for the aspiration because all of that. 

Rhandyl:

So, does he get any, like, physical, occupational, speech therapies? 

Danielle:

Yes. So, we have ECI, which is Early Childhood Intervention; they come to our house. We have PT, OT, speech, nutrition and then we have a caseworker who does just work with us as well. And then he also has nurse care, which she only comes once a week, just because his needs are pretty low right now, but yeah. So, we have all of those therapies; we see everybody a lot. 

Rhandyl:

Okay. Well, that's, I mean, that's good. 

Danielle:

Yeah. So we started out seeing everybody, I think, three times a week. So we were seeing somebody like every day, pretty much.

Rhandyl:

Yeah. I remember. 

Deonna:

Our houses are always filled with people, like constantly.

Rhandyl:

Yeah, before Remi went to school, we definitely had. It was a five day. I mean it still is, but yeah, it's a lot. I mean, it's the busiest baby schedule. 

Danielle:

It really is. But now that he's gotten a little bit older, we've kind of backed off a little bit. Just because there's only so much you can do at this point and what we're working on. So we don't see everybody every day anymore. Right. Yeah, we still see everybody, which has been a huge  blessing they've been awesome to be able to work with him and just see the the progressions that he's made.

Rhandyl:

Yeah, the little inchstones as we like to call them, or I like to call them.

Danielle:

Yeah, I was about to say they're they're very small milestones there. I mean,

Deonna, Danielle, Rhandyl:

But they're big to you I mean.. they're huge! They’re huge to us. Exactly. But they’re things other people don't even notice and we're like celebrating. I'm like, that's just the way it goes. I’m pretty sure Rem had a goal of playing with toys at three years old. She wouldn't play with toys. I mean, just little tiny things. I mean, they're so big. They're big to us. For sure.

Rhandyl:

So, Danielle, did you, did you know anybody or any children diagnosed with anything similar, or can you describe some of the misconceptions that come along with having a child who has this diagnosis? 

Danielle:

So, once we actually got the official diagnosis of lissencephaly, I had never even heard of it. Really anything having to do with the brain, I'd never heard of, had no idea. So this was like brand new to me. So I had no expectations, no nothing. Which I think is good and bad because you don't know what to expect. I also didn't look up anything until way later because I didn't want to know. And I just kind of let the doctors tell me what they needed to tell me and then if there was something I had a question about, I would look it up. But I never looked up  specifics. I have now that I've gotten past the initial shock of finding out what his diagnosis was. Right. Yeah. So I didn't know anything about lissencephaly.

Rhandyl:

Gotcha. I had never heard of it. 

Danielle, Rhandyl:

Yeah. It's, it's extremely rare. It's 1 in 100,000 births. Oh wow, that is rare. So it's, it's very rare. And of course I've heard of microcephaly. Right. But, yeah. 

Deonna:

Allie had hydrocephaly as a baby. 

Danielle:

And that's actually pretty common with lissencephaly kids too. Yeah. He doesn't have that issue, I think because he has microcephaly. 

Deonna, Rhandyl, Danielle:

Yeah, it's like the opposite. He didn’t have to have a shunt or anything like that? No. Okay. Yeah. So which is..Yeah, that's. Good. That's big. 

Danielle:

Which means he didn't have to have any surgeries. It's at least with his brain at that point. Yeah. Yeah. So yeah, I didn't really know anything about it until I looked it up, I think he was like six or seven months old when I officially looked stuff up so..

Rhandyl:

Good for you. I'm proud.

Deonna:

You’re like, I’m in a better mental headspace now. 

Danielle:

Yeah. And that's why I waited. That's so smart. I knew that if I started looking stuff up, I would just go down a deep dive and find all the negative things that I didn't want to hear.

Yeah. Oh, yeah. And I kind of made just like a, a mental note to myself, like, I'm just going to let Barron show us what he's going to do and what he's capable of, and I didn't have any expectations, so anything that he did was positive, and I wasn't looking at, like, the things that he wasn't doing, so I, that's kind of my mindset on his diagnosis.

Deonna:

Well, you were, you were in the present, you weren't obsessing over five years from now, which is definitely the healthier way to handle it. I didn't look up stuff either. Really. When Allie got hurt, I just like, and people were looking it up and telling me and I'm like, la, la, la, la, la. I don't want to know because there's nothing I can do about this today, I mean, that's it. Right. So yeah, that's definitely smart. 

Danielle:

Yeah. But I would say as far as like misconceptions go not with lissencephaly specifically, I think just in general just for raising a disabled child. Just from my past experience, just, I know I would see somebody that had a disabled child and look at them and be like, Oh my gosh, I cannot believe they're going through that and that's what they have to live with and I thought all these negative thoughts and just...

Rhandyl:

Kind of felt sorry for them?

Danielle:

Yeah, you feel sorry for them and then you just think there's no way that they're happy.

Deonna:

I used to think that too. There's no way they're happy.

Danielle:

Yeah, like there's no way that they can be happy with that, you know? Yeah. That was like my thought whenever I saw somebody but that is like the biggest misconception, especially having Barron. He has brought more joy than I've ever thought possible with having a disabled child I mean he doesn't do.. He doesn't do anything. Literally, he is like a newborn that can't do anything for himself. He can't eat for himself. He can't, he doesn't have sight, technically. So, he can't see. Yeah, so he has neurological blindness, so his eyes don't see. Oh my gosh. His brain isn't processing what he's seeing. Right. So he has never seen me, so he can't even look at me and recognize that it's me.

Deonna:

But is his hearing okay? Do they think he can hear? 

Danielle:

Yea, his hearing is good. His hearing is fantastic. 

Deonna:

Okay. I bet you're like, I wake him up all the time. 

Danielle:

So it's just like he can't do any of these things, but there's just things that you find that bring you more joy than something would with a typical child. Oh, yeah. Yeah. Like he's trying to figure out how to smile right now. Like he doesn’t.. oh my gosh. He doesn't know, but he, he will do it. And it's just the best part of the day because you..

Deonna:

..you guys start screaming?

Danielle:

Yes. 

Rhandyl:

So it's just like, and there's like certain things that you're like, oh, he loves this so you like do and see the reaction?

Danielle:

Yeah. And his little personality is coming out and like, oh my gosh. Even though he can't  verbalize anything and he can't move his arms or legs in the way he wants to, he is starting to make noises that I'm trying to understand, like, what he's trying to tell me without telling me.

So, it's just like, it's just crazy how much joy he's brought and I truly think that it's made me really focus on the smaller things that no one looks at when you have a typical child. Yeah. Just because it's things that you, at least in my perspective, that I'd really never thought that he would do. So, things that he does do, I'm like, Oh my gosh, this is the best day ever because he's doing XYZ, whatever it may be. So that's like the biggest thing is. The amount of joy that this child has brought both Brayden and I, and our whole family, really. So, that's the biggest thing. 

Deonna:

Well, and people outside of this world may not understand that, but I mean, we've been through more heartache than we ever thought we would, I mean, me, I ever thought I would go through on this earth. But then the joy is so much bigger than it used to be because like we've talked about this before, you know, you don't care about dumb stuff anymore. You just are focused on the good things that are happening, and it can get hard sometimes, obviously. We all know this, but yeah, I think you're right about that. 

Rhandyl:

Yeah and I think, I mean, we've said this before, but we kind of live, we try to live in the present and like planning thing and like. We still plan, but I feel like when plans fall through for us now, or at least for me, it's like, yeah, you know, no big deal. Just brush it off. 

Deonna:

Well, and we all know that our time on earth with our kids is more limited than some other people are going to experience with typical kids. And so I think there's that too. You're just soaking it in while you have them because you don't know, you just don't know. 

Danielle:

Absolutely. I think that definitely, because we don't know how long we'll have him and we know his life expectancy is definitely..

Rhandyl: 

I was gonna ask.. so they only told you that like in the NICU.. have they given you now that you have a.. Have they given you any sort of a life expectancy?

Danielle:

So a doctor has not, but Google has. Dr. Google. Yeah, Dr. Google has told me this. I looked it up, like I said, probably he was like eight, nine, or so months old. Mm-hmm. When I was in a good head space and I was actually doing research. And so, typical life expectancy is about 10 years. Mm-hmm. so. I read it and of course was like, oh my gosh, like 10 years, that's nothing. Mm hmm. So that was hard. 

Rhandyl, Deonna, Danielle:

But there again, that’s joy. That's why, I mean, I can see, you know, now that you say that, it's like.. oh yeah. Right. Well, every tiny little thing. Exactly. You guys are just like sponges trying to soak every little. Just knowing that, but who knows? I mean, you never know. Yeah. Only God. Right. Only God will know. 

Danielle:

Yeah. So, and, and. I mean, just with every day, there's no, there's no guarantee for any of us. But just knowing, just knowing that his time is limited, we definitely, I mean, we just take everything as it comes and it's, we try to find the joy in everything, and try not to look at any negative. Just because you don't have time for that. No. Really.

Rhandyl:

Now, did they say this is just a congenital or was, was there genetics involved ever? 

Danielle

So we've done lots of testing now that we, once we got our diagnosis so it's a genetic condition, but it's not hereditary. 

Rhandyl and Deonna:

Gotcha. Oh, I always get those mixed up. Yeah. Me too. I think most people. We had the same conversation with Amber. I was like, so hereditary and genetic is not the same thing. 

Danielle:

And it's confusing; it took me, like, quite a while to actually figure out, okay? Because you think about..okay, well, how did this happen? But neither Brayden nor I have the specific gene change that Baron has, which is literally just one gene mutated.

Deonna and Rhandyl:

That's crazy. That’s why it’s so rare, right? 1 in 100,000 you said?

Danielle: 

1 in 100,000 Wow. Yeah. 

Deonna:

Don't you love it when your kid has like a rare thing and you're like, why me? But you know, it's just like, yeah, you just go on with life.

Rhandyl:

Yeah, I don't know what Remi? I mean, how many, she's the only one that I know of. 

Deonna:

You can't Google hers. 

Danielle:

The funny thing that I always kind of joke about now is like, just because his condition is so rare. You know, we met with a geneticist about all this to just kind of see like what happened and all of that. And she was like, well, if you want to have another child, your chance of this happening again is less than 1%. And I'm like, well Barron is already a less than 1%, so that doesn't really give me much hope, but I get it. 

Deonna:

Is this supposed to make me feel better? 

Rhandyl:

Okay, that is so genetics though, like they are so, it's so funny. They talk in a completely different language. Yes. Their rationale for everything. Huh. I mean, the questions they ask you, like, I'll never forget the first genetics. I mean, we've talked to so many, but first time I was asked this, because I've been asked this a lot more, but like, are you and your husband related? And I, I mean, just, I mean, all these questions, I mean, they are some, there’s some doozies out there.

Deonna:

That is so weird. 

Danielle:

I don't know if we got asked that question. We might have, I don't really remember, but oh yeah, it's funny but it’s.. Surely not.

Deonna:

Oh my goodness gracious. So what were some, if any, I mean we've kind of talked about this a little bit, but like what positives have you seen or unexpected or, you know, surprising moments that have came out of, you know, Barron and raising him?

Danielle: 

Yeah, it's just kind of like what I was saying earlier. It's just the amount of joy that we've gotten from him. Just figuring out, kind of, his personality has been the biggest thing. It's like, even though he can't say anything, do anything. Yeah. He still is his own little person, and just seeing him here and living and breathing and..

Rhandyl:

it's a miracle. 

Danielle:

It is. It's a miracle. Mm-hmm. Because, we, Brayden and I were talking just the other day about your brain literally controls every single thing your body does. Yeah. And his brain is telling him to breathe. Like, that's huge! And so we  have looked at those little miracles and we just God for that.

Rhandyl:

Yeah. I mean, seriously cause I mean, Remi, her brainstem is, I mean, the only part of her brain that's affected is a little part of her brainstem and she completely stops breathing as soon as she falls asleep, right? So yeah, just the fact that..

Deonna:

That's what my kid does too. Yeah, I mean which hers is spinal cord but I mean, it's just neuro is crazy, like we've had neuro people be like, you know telling us we don't know anything compared to what there is to know about the the brain, and it's fine.

Rhandyl:

That's talking about genetics. I feel like that's the same thing. They're speaking a different language, there’s so many things they don't know. Yeah. That are still unfolding. Yeah. That will still be unfolding for decades. 

Deonna:

Yeah. You have to be okay with not understanding all this because no one does. Even the most brilliant minds in the world don't understand everything there is to understand about this. 

Danielle:

Yeah. So I'd say that's kind of the biggest thing is just finding those little things where you're like, wow. Little God moments of look at what he is allowing Baron to do when he technically might not be able to do these things. So that's just pretty cool to see.

Rhandyl:

Yeah, that's, that's awesome.  

Deonna:

Has all this  affected your relationship with God in any way? 

Danielle:

Absolutely. Absolutely. So I would say just when I was still pregnant, there was a lot of doubt. And just, I would say, I mean, I was mourning, so I was sad, sad, almost depressed and, why me? And that was probably the hardest..that was the lowest point that I think I was at, just cause you're questioning..why are we chosen with this burden of having a child that's going to be disabled?

Yeah. That was the hardest thing and just questioning…how are we going to do this? Why is it that we..”

Deonna and Rhandyl:

You don't feel worthy? What did we do? 

Danielle:

Yeah. What did we do? And, you know, you just start asking yourself all these questions like, I mean, you'd go down a rabbit hole of these things and it makes you question your faith and what true faith is. Yeah. You just wonder, is there anything that I could have done or, you know, all those questions. Oh my goodness. Yeah. And so, that was really hard. And I think I, I didn't  fall away from God at that point I just kept praying questions and wanting a miracle to happen and mm-hmm. everything would be okay and there'd be no issues. And I, I would always pray, God, prove your power.  I know you can perform miracles like you. Mm-hmm. You are the Miracle Worker. So Yeah. I know you can do this, so please, prove those doctors wrong, that they can, that you are powerful, more powerful than any diagnosis that you can give.=

I mean, I pray that every single day, multiple times a day for probably the rest of my pregnancy. Yeah. And then, When he was born and there was still all these issues and then we find his diagnosis, you just wonder like, well, why, why are you not answering? Why didn't you answer my prayer? Mm hmm. And so that was like, yeah, it was yeah, just a big question of..are you even there? Why was I praying all these prayers and nothing happened?

Deonna:

It's hard when God doesn't do something that you know, he could do right but you're just like come on like this is my kid, aren’t you fixing this for me? 

Rhandyl:

That’s what I was going to say, I mean at least.. and I think I can probably speak for the majority of disabled parents that are Christians that we've all prayed that prayer, like you have all the power.You are, you know, please just fix this, you know?

Deonna:

But yeah. So it's just at that point when you're still questioning..you’re like, okay, well, if you're not going to fix this issue of his brain then what what am I getting out of us and boy have we learned So much just since having him. and yeah and knowing God's plan is far greater and better than you could ever even possibly think of mm hmm. And sometimes he uses things to make you grow in your faith to become a true Christian, who believes with everything in you that this was for his purpose and his good, not for anything having to do with us.

Our joy is not earthly. True joy isn't earthly. It's Eternal joy in heaven with, with Jesus. That's  the biggest thing that we've learned. And honestly, I think Barron's purpose of being here on this earth is it was for us to realize that. And I think a lot of people that don't go through hardships as severe as what we kind of go through. Yeah. As disabled parents. That you don't really truly understand that until you go through it. No, you don't. Because you think, like, oh, X, Y, and Z, this was so hard, and, but God got me through it, and everything's gonna be okay, But, yes, we're going to get through this, but  in the end, we're still going to end up losing a child.

Mm hmm. But we can't fixate on that because we know that no matter what happens, Barron will be in heaven and we will be there with him one day. And that's what we have to hold on to and that's the greatest joy that you can even imagine. Yeah. So it's just crazy that... A little small human can teach you something as significant and as that, I mean, that's the biggest lesson that you could ever learn and truly understand.

Rhandyl:

Yeah. So. So that was how God answered your prayer. 

Danielle:

Absolutely. 

Deonna:

Yeah. It's a hard day when you realize that you weren't promised to have an easy life, and I always thought I was going to have an easy life, and then when that took a turn into a different direction, it was confusing for a while, but you know, you figure it out, but it doesn't happen overnight.

Danielle:

And of course, there's still days that, I mean, my niece is a week older than Barron. So that's hard because I see like where she is developmentally and then I see Barron and then I, there's always that comparison of, well, he's still in newborn stage and he's a year and a half, but like what he quote unquote should be doing any of those things.

Deonna:

Like what he quote, end quote should be doing or whatever…

Danielle:

So there's days that of course I compare and I'm like, well, this sucks. Like, it's not fun. We all do that. Oh, yeah. But then, then you just have to get right back on it. 

Rhandyl and Deonna:

Then he starts smiling. Right. Oh, we're good again. 

Danielle:

Exactly. So, it's just kind of like a rollercoaster, I think. Rhandyl and I have talked about that. Just the rollercoaster of just emotions. And it's always up and down and loops and. 

Deonna:

It's a daily thing. Yeah. You can be happy one second and super sad. I mean, it's just all over the place. Yeah.

Rhandyl:

So what would you tell a parent whose child may be going through getting this diagnosis or any difficult diagnosis?

Danielle:

So, I wish I had more advice other than like the typical like It's going to be hard, but it's going to be okay. But that's, I mean, that's, that's what it is. It's going to be hard and there's going to be days that, like we said, are going to be harder than others, but living in the moment is the biggest part and not fixating on the “what ifs” or the “that's never going to happen” or whatever.

That's the biggest thing is not to fixate on the negatives because then, then you just go down a deep hole of sadness and it's not fun. So just knowing that it'll get better, it’ll get worse and then it'll get better again but just to keep keep on moving just keep walking forward and things things will get better and you'll be able to handle situations better and don't be scared.

I mean you can be scared for a little bit, but you figured out. Yeah Oh, yeah, like we all do there's new things. There's things that you never thought you'd be doing, but you do them, you figure it out, and then at the end of the day you're like, oh, yeah, that’s no big deal anymore. 

Rhandyl:

It just becomes routine.

Danielle:

Yeah, and then you don’t know any different. Right. That's what my mother in law, she would always tell me, when I was still pregnant, she'd say, once he's here, you're not gonna know anything different and Barron is just gonna be Barron. And I was like, for me, so eye opening for some reason. I guess I just had the vision of, oh, all these things are gonna be different, and he's always gonna be different, and he'll eventually be in a wheelchair one day and all these things. And you like start thinking about that..

But she was like he's just gonna be Barron like there's not gonna be any difference from any other child that you would have like just as we know him as what he is. Yeah. So that was  super eye opening to me because he is, he's just Barron like he does what Barron does. So, I know what you mean. 

Rhandyl:

That's awesome. So she said that whenever you were pregnant?

Danielle:

Yeah. Yeah. I think it was towards the end of my pregnancy. 

Rhandyl:

Did it click to you then, or did you think about that later on, like, oh, wow? Or did she put it into perspective kind of before? 

Danielle:

Yeah. I think it was just kind of perspective. That's awesome. Just moving forward. 

Rhandyl

I love that, though. But yeah. That's kind of going back to like, when I asked about whether you, you wish you would have known, not known or known, you know, yeah before he was born. Yeah, for sure. 

Deonna:

So if you could describe what Barron has taught you about yourself through this experience, what would that be? 

Danielle:

Oh my goodness. I literally could talk for hours on all of the things that Baron has taught me which is crazy because again, he's 18 months old, like, he's a baby, but there's so many things that I have learned just from having him and going through all the trials that we've gone through with him.

But the biggest thing is definitely, like I said earlier, is learning what true faith in God is and just sitting back and having to like throw up your hands and say, okay, I will trust you in whatever it is that you're going to give me. And then really knowing that his plan is far better than whatever I could think of. Which was just so crazy to think about. 

And then just knowing that God wasn't going to change my plans for His. Was something that was hard for me to grasp at first, but now I'm like, okay, I understand why You did that and I've seen the good come out of something that was such a deep disappointment and just a deeper relationship with God has been.

Just insane how, how much my faith has grown because of Barron. And I think something that Brayden and I have talked about is when I was pregnant, we would talk about Jesus the night before he was crucified and how he would pray to God asking Him to take that cup from Him, because He knew what was coming. He knew that His death was coming on the cross the next day.

Deonna:

And that kind of means to take the burden from Him, for people who haven't  heard that phrase. It's kind of weird.

Danielle:

Yeah, so and He prayed that three times and knowing what good would come out of it. So yeah, we would pray. Obviously, we wanted our burden taken and yeah fixed. But then you kind of flip your perspective and you look at it and say, okay, Jesus asked God for that to be taken from Him, The biggest disappointment of crucifying on the cross. And he takes it and makes it into THE BEST THING IN THE WHOLE WORLD. The greatest thing to ever happen. He made. death of victory. So if God can do that with Jesus and Jesus accepts that, then we kind of looked at our situation and said, okay, well, if God doesn't take this from us, then something good can come out of this. Yeah. If God can take. Death on a cross and make it literal victory. 

Deonna: 

That's a really good way of thinking of that. Yeah, I never thought of that. 

Danielle:

That was like a huge we talked about that, definitely towards the end of my pregnancy. Just, just to help us. Mm hmm continue to realize like whatever we're given It's nothing compared to what Jesus gave on the cross. So if He can do that, we can, we can manage. Oh, wow. 

Deonna:

Well and it's crazy to how I love that, but it's crazy to how these kids, there’s so many kids out there who are nonverbal or they have these I say perfectly imperfect bodies, like my daughter or whatever. And they just become this massive influence. They, they don't say a word their entire life and they just are so influential because of  people watching you and how you're reacting to that and everything. So I think that's really cool. 

Danielle:

Yeah. And I think just kind of adding to that we haven't really been we haven't, we've been open with Barron and his diagnosis, but we haven't openly shared on Facebook or whatever.

We just, we talk to people if we see them out. But just we posted on his birthday, just kind of like an update on what we had been through for the first year of his life. And we didn't even post his diagnosis. We just kind of shared like our testimony with Barron and just how our faith grew just with the trials that we had with him, and the amount of people that reached out to us just to say their perspective on faith had changed from reading our post.Yeah. Was insane. 

Like, I'm telling I was blown away with how many people were reaching out to us and saying, thank you so much for sharing that. Like it really, it hit me hard knowing what you guys have gone through and seeing what faith really looks like with what you've gone through. So that's been a really cool part of Barron's story. Cause that's all, that's all from Barron and, and God has allowed that to happen. And he, he orchestrated all of that again for His purpose being to hopefully bring more people to Christ, which is we've seen happen multiple times from again, a small human that's never said a word, which is just crazy.

Deonna:

They have influence. They do. They're making waves.

Okay. So what resources would you recommend to a parent that is facing a similar challenge to what you guys are facing? 

So as far as resources go I think the thing that's helped me most is finding other parents that have children with the same diagnosis. Just because with Barron's diagnosis, it's so rare.

There's not a ton of people. I mean, I think there's one other child in Lubbock that has lissencephaly, and I actually have. Reached out to this mom because 

Rhandyl and Deonna:

Yeah, of course you have!  You're like we have to be friends now.

Danielle:

And she's younger than Barron is so Barron's the oldest yeah out of the two in Lubbock, that I know of. But just finding somebody that you can relate to, even if it's just on social media, I've found so many.

Rhandyl:

I was going to say, are there groups out there?

Danielle:

Yeah, there's, there's Facebook groups.

Deonna:

Specifically for that diagnosis?

Danielle:

Yeah, there's one that I'm in, it’s actually a worldwide group on Facebook. So there's a lot of people in there, which is really nice because you can see different stages of life and different severities of the lissencephaly and kind of what other people have gone through and how they're handling it. And that's just been really, it's been really good for me to see. And then even just Instagram, I think I searched the hashtag lissencephaly one day just because I wanted to see if there were any other moms that were sharing their lives on social media and I found one. And it's been just so great cause and I don't even know where she lives, honestly, but I talk to her like every couple of weeks.

Rhandyl:

I mean, essentially how a lot of like Deonna and I met through social media. Yeah. I've met so many moms and caregivers through social media. We've talked about this before, but it's, there's so many misconceptions or just negatives with, with social media. But I feel like, especially in our world, that's where a lot of our resources come from. Because when you have kids with such rare diagnoses, rare things happening to them I mean,  that's where you go to. It's not like you can just go to your local playground and..no. Exactly. 

Deonna:

Yeah. And when you, when you use the hashtags, people might think like, oh, they're trying to get attention by using this hashtag, but it's not, that's not why we do that.We do it because there's been a lot of times where I've been trying to find other moms whose kids had trachs or this, and when you use those hashtags, you can click on that and you can see just everybody in the world who has that problem. And it's this community thing that you can find people.

Danielle:

Yeah. And I think with, at least with Barron's diagnosis of lissencephaly, because it's the brain, there's so many parts of the brain that can be affected and some kids are more affected than others and it just kind of depends on what areas are affected. So like some kids aren't, they can't breathe on their own, so they're on full oxygen 24/7. Some kids have trachs, some... Oh, I bet. Yeah. Some are able to walk, some are able to verbalize. 

Rhandyl:

So it's like a really broad diagnosis. Yes. Because  it just depends on what, what area of the brain or what connects to what, you know. 

Danielle:

Yeah. We will eventually figure out, once he's a little older, we'll figure out what areas are more affected, so we'll know more of what to expect, but we kind of already know, we see what he's doing right now, and we know it's a pretty severe case, so there's a lot of things that are affected. Oh, okay. We'll find out eventually. Yeah. But it's just good to see kind of the, the broad range of, well this child is very similar to Barron, but look what they're doing now. Mm-hmm. And so it gives you kind of.. Yeah. It just gives you just more info and a community to reach out to if, if need be. Yeah. So that's  the biggest resource that I've come across. 

Deonna and Rhandyl:

Same. Yeah. Me too. 

Rhandyl:

Well, Danielle  I'm just so happy that you came on to share your story, your faith, your grace. I mean, wow, what a testimony! Um, Because I know you haven't shared it with many so we really appreciate you going on and doing doing it with us. Like yeah, it's awesome.

Danielle:

Yeah I'm definitely thankful that you guys wanted me on, and I think this is a great opportunity for me to share Barron's story for those that wanted to know, kind of, more that I haven't had the opportunity to sit one on one with. Yeah. So just a way to share our our story with him and how much we love him.