Stacy Raising Addy

In this episode of Raising Disabled, we talked to Stacy Faulkner about raising her daughter Addy with Cerebral Palsy and their adoption journey.  

You can learn more about Stacy by following their story on Facebook.

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Transcript

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Deonna: [00:00:00] Hey y'all. Welcome back to Raising Disabled. Today we have Stacy Faulkner with us, and she's one of our new friends. She is raising a disabled child just like us, and we're so excited about these parents we're gonna talk to this season. And they all have just something unique about them, like we all do, but just some fun story and interesting story that we can't wait to learn about.

And so, Stacy, tell us first a little bit about your family and where you live. 

Stacy: Yeah, we're about an hour from Detroit in Michigan. It's just me, my husband, and our daughter Addy. My husband and I had tried to conceive for about nine years when we were married and it just didn't happen. And so we just were wrestling, do we want to do all of the expensive interventions mm-hmm. To what could happen there. And we just early on decided, you know what, that wasn't for us.

And so we [00:01:00] started to go, the adoption route became foster parents and with the intent to adopt, not just to foster. Mm-hmm. Okay. And so ultimately that's how Addy came into our life and there's a big chunk of the story there as well, so 

Deonna: I bet, yeah. So that's so cool. 

Rhandyl: Yeah. Yeah. I can't wait to hear more about this, but I wanted to ask you an icebreaker question.

What is a small win from the last couple of weeks that has felt really big to you? 

Stacy: I'm thinking more in the last couple months, and I think that's perfect. Yeah. The last couple months and we will get into this too, I'm sure we experienced a medical trauma for sure. And I relate to you guys even more now than I did when I first started listening. But within that trauma and being hospitalized for so long, our daughter finally learned how to communicate pain.

Oh, wow. And it was one of those things where we've been trying for so long, with sign language, [00:02:00] does this hurt? Does your ear hurt? Does your stomach hurt? And everything was very vague as far as her trying to tell us. But through this medical trauma, she almost had to force herself any way she could try to tell us she's in pain.

Mm-hmm. And finally we, being in the hospital, we would say. Addy, does this specific thing hurt? Does your stomach hurt? And she would tell us, yes, she has a great yes or no, which is awesome 'cause we can ask her questions. . And she would finally point to where she was hurting and tell us very clearly, yes or no, this hurts or this doesn't hurt. And that was huge for us. And I'm sure you would understand that as well. 

Rhandyl: Oh yeah. That's been a huge goal for us, for over nine years now. Yeah it's so hard to know, it is still a speech goal currently. So that is a huge win, I would say. Huge win. I mean, unfortunately that it had to happen through [00:03:00] hospitalization and Exactly. But that's huge. 

Stacy: Yeah. That was one of our, silver lining moments. Yeah, for sure. 

Deonna: You know, You live a crazy life when you are happy that your kid can, communicate pain. Like most parents just take that for granted. Their kid's I'm hurting. It's this neat, and I mean, not very many people outside of this world understand that. I really barely even understand it. There was some moments where, I mean, my daughter, she's never been nonverbal, but , she was cuffed completely where we couldn't speak to her for, six weeks, seven weeks, whatever. And it was so frustrating.

And I think about that a lot with you guys. I'm like, oh my gosh, I only had this small window in my life where I was experiencing that. And that's y'all's every day. And it's just, it's crazy. .

So what made her end up in the hospital? Tell us about what happened with that.

Stacy: Yeah. So part of [00:04:00] her pain management, keeping her comfortable, she has quadriplegic, spastic cp. Mm-hmm. And we were doing oral baclofen for several years mm-hmm. Until we decided to try the baclofen pump, which is basically, if you don't know what that is, it's any kind of pain intervention pump that is surgically inplace into your abdomen. Yeah. And baclofen is released through the spine slowly, all day long throughout the day. So you get more of that continuous relief with her muscles and spasticity. Right, right.

So she had a pump in for about six years, and that's as long as the battery life is. So every six years it needs to be replaced. Yeah. So we were a month away. From getting it replaced, the surgery was scheduled, everything was going according to plan. I just know where this is headed until didn't, until it didn't. Yeah. And she woke up, made a plan morning. [00:05:00] Exactly. Oh my gosh.

She woke up one morning. We woke up to her screaming, and that's not normal so we ran into her room. She was twitching and toned out beyond what we've ever seen before. And honestly, the best way I can describe it to people, it was like watching an addict withdrawing. Mm-hmm. Because what was happening is her baclofen pump for some reason was failing. Something was kinked, something happened. Mm-hmm. Yeah. Overnight. 

Deonna: And you cannot quit that drug cold Turkey. 

Stacy: Exactly. Yeah. So, we didn't know what was going on originally. So , we took her right to Children's Hospital, which for us is in Detroit, about an hour away. And we got there as fast as we could. I all along knew something was going on with her Baclofen pump, but of course you take them to the ER and they wanna go through the whole list of things.

Oh, yes. And I'm like, you would just start with what I think it is. Let's go. You would get there a lot [00:06:00] faster, right? Mm-hmm. Yes. I didn't make many friends in September at the hospital. 

Deonna: Like, I'm smarter than you. Let's go. Yeah. 

Rhandyl: The one thing you learn after all these years is , the caregivers, the moms, we know best. You just listen. Yeah. But it, yep. Yeah. You didn't, you have to put up a fight. The ER's the worst. They ask you all these questions and I'm like, is it not in your system? It's definitely not our first rodeo here. 

Stacy: Right, exactly. So we did all the things. We, we went through all the things that they wanted to check. We had cts, we had MRIs, we had x-rays done, and I just knew in my heart something was going on with the pump. After 24 hours in the er, I cringe when I think about it still. Finally, 

Deonna: were they giving her Baclofen this entire time? 

Stacy: No, they weren't because they still weren't convinced that the pump was the issue. Oh my gosh. Gosh. I could tell. Okay. Just from looking [00:07:00] at her, she was withdrawing from something. Yeah, I'm not a doctor, but. I mean, yeah. So again we finally arrived at that conclusion and there was a lot that happened in between there, but, we had to get that pump out. Obviously we were scheduled to do that anyways.

Mm-hmm. So we thought, okay, we're just doing it a month earlier. She'll be fine. The pump goes in, we go home couple days later, she develops this hard, we'll just call it stool ball. Mm-hmm. Yeah. From all the anesthesia. Sometimes that can happen. And of course I have a CP kid, so she's always dealing with those issues. Mm-hmm. So we had to go back, they had to relieve her of that. We'll just say, yeah.

Went back home again. Three days later she develops an infection. She, with her new pump, oh, I was gonna say mm-hmm. Where her, okay. I was wondering again. Yep. This can happen with any surgery. It's a [00:08:00] risk. Yeah. We know that, you know that. But of course that happens. So we had to rush her back again. Man, funny thing is I wanted the EMS to take her this time. 'cause I figured we'd get there faster. Yeah. I had to fight with the EMS worker to. Say we need to go now. And she was like, mm-hmm. Well we're not gonna do sirens and a blazing down the highway.

And I said, listen, our doctor said if this is gonna happen, she needs to get there as soon as possible. If you're not gonna take her, we're gonna put her in our van right now and we won't need you. Yeah. I was just like, I never thought I'd have to fight with an EMS worker to be like, get my child to the hospital. That's so weird. 

Deonna: Yeah. So I've never gone lights and sirens in the ambulance and I have felt personally like we should a few times. They just, I don't know. They don't like to do that for some reason. I guess. Guess safety. Safety, 

Stacy: like does charge, is it extra? Is there an extra cost for them?

Deonna: I dunno. Yeah, there's some reason they don't like to do it. So weird. 

Stacy: So we get to the hospital and they're pretty concerned at this [00:09:00] point. Again, with infection, you're talking about the catheter in the spine and mm-hmm. I didn't wrap my head around it until later that they were concerned about meningitis. I was gonna say meningitis, some sort of sepsis. Mm-hmm. Oh gosh. Sepsis. Yeah. I was wondering, and again, when you're in survival mode, you're not quite thinking all of these things. No. Until later you look back and you're like, oh, that was really serious. Yeah. Interesting how the brain protects itself. Mm-hmm.

But, at one point she was laying there and they said, we're gonna move her to trauma. And that's when my brain flipped and I honestly thought of you guys. Mm-hmm. Because I had just several months ago found raising disabled and I thought, oh, friends that get me. Mm-hmm. But now I get you guys more than ever. Because it was one of those situations where I'm not sure if she was gonna be with us. Mm-hmm. And they weren't telling us the whole story. They were telling us [00:10:00] enough. And again, looking back, I think they were protecting us from some things initially so that we weren't scared. But I don't know if that was good or not, but long story short we got her stabilized and we experienced the PICU for the very first time for several weeks in a row. I actually love the picu Yeah. We met some wonderful nurses in the picu and then we got moved to another floor and we were like, oh, can we go back to the picu? 

Deonna: She needs three liters of oxygen. We gotta go back. Sorry. Yeah. Bye 

Rhandyl: It'd be nice to have that one-on-one. Yeah.

Stacy: Yeah. And so otherwise, she's always been healthy until that random thing happen. Mm-hmm. That really was put life into perspective a little bit more. 

Rhandyl: How long was she hospitalized that last stay? Like with the infection? 

Stacy: We were there for about two weeks. Okay. She was on probably five [00:11:00] different antibiotics 'cause they weren't sure what they were treating, what kind of infection. So of course infectious disease doctors are like, let's just throw 'em all in there and, until we figure it out, all that poor kid.

Rhandyl: Oh yeah, that's a lot of antibiotics.

Deonna: Every time infectious disease comes in, I'm like, they're just throwing spaghetti at the wall and seeing, I like, I'm always like, oh my God, here we go. But yeah. Mm-hmm. I mean, I think they know what they're talking about, but it's always a very I don't know, helpless feeling when they come in because.

It's hard to know what the deal is, but my daughter Yeah. Is quadriplegic too, and so we do the baclofen and all that. And I think we're far from doing the pump yet, but I have heard of this where people get like infections or things like that, but yeah, that's not one of those drugs you can just stop and not have some sort of really bad, it's not like a narcotic, but it's up there. It's serious, so. [00:12:00] Oh my goodness. Yeah, for sure. Yeah. I hate that you had to go through that. And I, yeah I hope that parents who go through a medical trauma can feel comfortable messaging us while they're in the midst of that because it's something Rhandyl did not wanna know about.

It's something I did not wanna know about. But now that we do, we can talk about it in a way that your family sometimes can't talk to you or whatever. We know the inside feelings that you're having and things like that. So I'm glad you thought of us. We like it when people reach out to us. I truly did. Us and things. So tell us about your adoption journey and how that all came to be. 

Stacy: I'm happy to. It's really beautiful and I love sharing our story and I haven't done it in a while. Like I mentioned in the beginning we weren't able to conceive we decided to go the [00:13:00] adoption route because we just felt like we had a heart to love any child that the Lord wanted to give us. Truly. And so we began the journey. We got our foster care license with the intent to adopt, and we told our social worker, do not call us unless this case looks like it is heading towards adoption, at least 60 to 70%. 'Cause that was our heart. That's what we wanted in the end, right?

And so one day it happened we got the call and of course I missed the call because I was getting my nails done and I never get my nails done. I was like so the worker dialed up my husband's. And he said, I wasn't able to get ahold of your wife, but I have this little girl, and she was just taken in through CPS and the only thing we really know at the moment is that she's having seizures. She's had about 20 to 25 seizures an hour. And they're taking her to the hospital right now to get evaluated.

And [00:14:00] he was like, okay. She was like, I really need you to call us back in about a half hour with an answer. And at this point it was just, we need a home. We need a home for her. Wow. Yeah. And so he hung up the phone and he still couldn't get ahold of me, my nails are drying. And he said I just stopped and I prayed. I was in the middle of a school parking lot where he was working, and he just prayed and he was just like, the Lord has never been so clear. This is your daughter? 

So he finally got ahold of me and he said, guess what? We got a call and there's a little girl that needs a home. And I said, oh, okay. He said, and he basically was like, I told them yes. And I said, you said yes without me. I thought he was joking. I had to have an answer. Yeah. And I said, oh my gosh. He said, Stacy, this is our daughter. And he's not really a jokester. So I'm like, yeah, okay. How do you know he's that? I prayed and, this is our daughter [00:15:00] and I, and in that moment I'm like, okay, this is our daughter. ,

We didn't really get to meet her for several days after because they had brought her to the hospital trying to deal with her seizures. She was malnourished very neglected, obviously. With the situation she came out of. So meeting her for the first time, we got to meet her at Children's Hospital. Mm-hmm. And we fell in love instantly. How old was she? Um, She was sleeping and we walked in the room. She was 10 months old. Aw. And when we walked into the room, she was sleeping and I put my little finger in her finger and she squeezed my finger. And I said that, said, gosh, 

Deonna: I know. You're like, it's over. It's happening. Aw. 

Stacy: And, uh. Then we started to learn more. And again, it didn't matter. Yeah, in that moment we didn't realize what this journey was gonna entail and it just didn't matter. But it was a lot. First we're dealing with controlling seizures. Now we're learning that she's [00:16:00] failure to thrive. So it was just one thing after another. There, there was no diagnosis. Birth mom never followed through with appointments and things like that. So we never had a diagnosis until we began to set up specialists and say, what's going on here? There's her body, doesn't seem right.

And shortly after that, a couple months later, through going through all of these questions and following these rabbit holes we found out that she did have cerebral palsy. And the way we found out, like kind of makes me cringe still. You ever have a doctor where it just kind of tells you something so Blatantly like where it's just like mm-hmm. Very matter. I didn't realize this was my first time hearing. Yes. 

Deonna: Like a huge deal. And it's like they deliver it in the most not big deal kind of way. 

Stacy: Yeah. They were evaluating her and she goes, oh yeah, she has cp. And I was like, what's that mean? Yeah, I know. I [00:17:00] mean, again, this is how much I didn't know. I wouldn't have known either. She really didn't even explain it well. So we're like, okay, we leave the appointment appoint, we go out to lunch and I'm just sobbing. Mm-hmm. And I said, Brian, will you Google cp? I don't even know what CP is. Yeah. So oh my goodness.

Fast forward, we were able to adopt her several months after. It was one of the quickest adoptions they've ever seen which was cool. Yeah. And she started to thrive. We never saw her smile for the first couple months we had her. . Her hair started to grow. She started to smile. Her personality started to come out. And it just made this journey so much more beautiful. And I really over the years of learning so much about her diagnosis and becoming a specialist of her.

Yeah. Mm-hmm. I've learned the power of, and the word and, and , I've always felt like I've needed to [00:18:00] act so strong in front of everybody and such a great advocate and like super mom and I never allowed myself to be vulnerable. And through counseling, thank you, Jesus for counseling, it has saved me so many times. Mm-hmm. The power of and is this life is hard and it's good. 

Rhandyl: . Yeah. I like that. I've never really thought about the, and me too. Yeah, 

Stacy: because we can be honest, but we can also say it's both, it's always both. Sometimes. Yeah. Always. 

Deonna: I feel like, before I started raising a disabled kid, I thought it was very, or it was like, you're happy or you're sad, or I did not realize I could be as happy as I am now and also be going through. Unthinkable, parenting experiences that are terrible. So yeah I definitely agree with that. That's so true.

And I was gonna tell you I don't know if you know our friend [00:19:00] Deanna, but we talked to her back in the day. Her episode was called Deanna Raising Joy, but she adopted a little baby that had Shaken Baby syndrome. And it sounds very similar, didn't know what was gonna happen or what the future held, but they just had this, and it was during a really tough time in their life, but they just had this feeling that they needed to say yes. And so, well, I'll have to like, introduce you to her someday. 'cause y'all have a very similar story. She had other kids, but , they were fostering a lot of disabled kids and they ended up adopting Joy. But it's a cool story as well.

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, When we started the foster care adoption process, we wanted to adopt a lot of kids. Mm-hmm. Or three or four. But then we got Addy and that's when everything changed. So it's like she's enough 

Deonna: Think rethinking that one.

Rhandyl: I can relate to that one. Yeah. 

Deonna: Oh man. 

Rhandyl: Took me a quite a while to decide. Maybe we should have a second. I don't know. But no, you're, your comment about the, and it goes with the next question that we have for you, and it's how has parenting [00:21:00] your disabled kiddo changed the way that you see yourself?

Stacy: I will say this, I'm not the same person I was 13 years ago. Mm-hmm. She's 13 now. And I think, through counseling, I've learned that nor should I be, nor should I be the same person I and same with any situation. Of course I wouldn't be the same person. Of course, my bandwidth is not the same. Of course, I walk into a room and I don't remember why I am there, but. I think it's one of those things where you being okay with looking at yourself in the mirror and saying, I've changed and it's okay.

Mm-hmm. And I'm a better version of myself because I've been able to look in the mirror and see the struggle and see the grief in the stages of grieving and know that I come out the other side and I'm still winning because mm-hmm. I have been given this gift [00:22:00] to raise, and this life really isn't about me. Anyways. I get to, and I think I keep coming back to, I get to raise her. We get to have her forever. Mm-hmm. , She is our third wheel forever. Perspective. I'm always getting per new perspective about life. Maybe in the past I was more negative about situations. Never really understood, how good things come out of hard situations. And now that's all I see sometimes.. and not every day, don't get me wrong, but I feel like I'm able to see those silver linings in life and I'm able to look at the small stuff and go, that does not even matter. And my, or they matter the most, would not have said that. So. Exactly.

Deonna: Yeah. We say the Taylor Swift quote the old Taylor can't come to the phone right now 'cause she's dead because that's how we all feel about our old life. I, I [00:23:00] don't we're not even alive anymore. It's like totally different.

Yep. People being reincarnated or something, I don't know. But I laughed about when you said you don't know why you went into the room. We call that trauma induced a DD at our house. Like my husband's like yours is getting really bad. Like you are doing nine different things at the same time. And I'm like, I don't even remember what the first thing I was doing was, and I just have complete tasks all over the house. So that's my 100%.

Rhandyl: No, I totally agree. It's just a completely different perspective that we have on life. And like you said the small things don't matter, but then the, some of the small things matter the most and it's just awesome. We hear this a lot from caregivers that we interview. Across the board, I feel like that's one of the biggest blessings and things that we've learned throughout this process is just our perspective and life has changed and we become kinda like Deonna said, [00:24:00] reincarnated. So I relate.

Stacy: It's good to relate Yes. 

Deonna: The whole point of this. . So what do you wish people knew about your home life as a parent of a disabled child?

Stacy: If you think it's a lot, it's even more than a lot that you think. Did that make sense at all? Yeah. Yeah. Makes complete sense to me. I saw this online once, it's think about having an infant, right? And you bathe them, you feed them, you change them, and that's what you do all day long. And maybe even in the infant stage, some moms are going back, they're going, oh, I don't wanna do that again. That was exhausting. And the best way I could describe it to somebody is that we're doing that every day for a 13-year-old teenager, hormonal. Mm-hmm. Teenager. Mind you so glorious.

And it's just, it's a different kind of [00:25:00] exhaustion. I have some friends that used to tease me, I take a nap every day, whether it's a half hour, sometimes it's an hour. And they're like, you nap all the time. And I said, if you only knew I literally need that time to just recharge for the next portion of the day. Mm-hmm.

I try to break my days up into the morning and then afternoon and evening because , it's just a mindset, it's overwhelming. You know, I have to, you know, and then in the evenings, my husband and I , we'll tuck Addy into bed and our ritual has been, we meet in the middle of the living room and we give each other a hug and we just kind of melt and we say, we gotta do this again tomorrow. Right? Oh my gosh. Or no, I think we said we have to do this tomorrow. Right? And he goes, no, we get to do this tomorrow. Yeah. And again, that's, we try so hard to hang onto that perspective,

Deonna: yeah. I appreciate you changing the word from have to, to get to, because like my daughter hears everything we're saying. She's, [00:26:00] she's listening all the time, and I was saying really kind of harmful. I don't know. Like the way I was saying stuff to me, I started to notice could be harmful to her. I was like, I have to do your trach care. I have to do your change out. I have to switch your circuit, and then now I just say, I'm going to, I'm gonna do this, I'm gonna do this.

And it's like just taking the word have to out. I think it made her feel less bad because my daughter has verbalized to me on multiple occasions, I'm sorry I've ruined your life. I'm sorry that I've made your life hard. I'm sorry. And I'm like, Allie, this isn't your fault. This was not your fault, but.

Like she knows that she ha that her disability has changed our life and it's not her fault, obviously. I think she knows that deep down, but she gets worried about it. But it's like a lot of parents, even parents of [00:27:00] kids that don't have disabilities, like we say these things and we don't realize that our kids are listening and being like, oh, my mom has to go to my game. My mom has to do this. It can be harmful to them, especially disabled kids, I think. 

Yeah, I have a 13-year-old as well.

Oh, lordy. Yeah. 

Stacy: Yeah. The things we're experiencing with, her being 13 is also very encouraging. 'cause people will remind me, Stacey, this is very normal, like how she's acting, the things she, this is normal and I'm like, normal. What's normal? 

Deonna: You're like, oh cool. Yeah, exactly. I'm glad she can this to, 

Stacy: yeah.

I don't really know what normal is. Yeah. You, 

Rhandyl: like you were saying, you were comparing your life as a newborn mom all of the time and Deonna said that in the past and mm-hmm. It's so funny. I'd never really thought of that perspective until I had a typical newborn [00:28:00] and I saw what the typical newborn situation is and then it goes by super fast and then mm-hmm. You have this toddler that's not near as dependent on you. And then I'm like, what we do with our daughter? That is a great comparison. I mean, that stage never ends. It's just constant dependency on not only us, but machines and all the things. It's an interesting way to put it, but it does, that helps people that, that don't live our lives, kind of have a little bit of an idea of what it's like on a daily basis and. , Deonna and I are soon to be in the hormonal female stages with our daughters, and I am so dreading it. So dreading it. Yeah. So, yeah. Buckle up. Excited. She's already excited. So sassy. I am like, oh boy. Yeah. Can't wait. 

Deonna: Y'all will be calling me up, like Stace. Mm-hmm. Yeah. Be like we probably won't wanna [00:29:00] know.  The funny thing too about the whole newborn comparison is, I was 25 years old when I experienced my first newborn situation, and then I was, I think 29. So I was in my twenties experiencing this. So I was very young, had a lot of energy, things like that.

Well now, I mean, I'm turning 40 this year and I'm gonna be doing that newborn routine. As long as she's here on this earth. And so, I see 65-year-old people doing the workload that a 25 or 26-year-old did. And I mean, I see this dad at Cole School who just is older, quite a bit older than me, and he's just lifting his daughter's wheelchair up into the truck.

He's picking her up, he's doing things that other men his age not only aren't doing, but [00:30:00] probably can't do anymore. And so it just, I mean, that's something I get nervous about for the future and why I try to like, work out and do all these things and be healthy because I can't let my body, yeah. Get out of shape like ever. I mean, it's kind of a scary thought for me sometimes to think about how good of shape I'm gonna need to be in when I'm 60. 

Stacy: I will say. The word future is the part that always gets me the hardest. Me too. It's, you're in the present, but you're always thinking so much more into the future than most people are. Mm-hmm. Because we always feel like you have to be several years ahead of your brain, in your heart to prepare for that next thing. Yeah. People are always like, don't worry about that's so far down the road. Or what's she gonna do when she's, out of the school program at 26? Mm-hmm. Oh, don't worry about that. I'm like, but my brain has to figure it [00:31:00] out, mm-hmm. So the future stuff is probably the stuff that gets me the most.

Deonna: Yeah. Yeah. I, Rhandyl always talks about being in the present and that's what you need to do. 

Rhandyl: That's my thing. Like stuff, I think it's my, brain's safety. I don't know , or if it's me just being in denial and gonna be just in shock someday oh, why didn't you prepare? I don't know. But I'd really avoid thinking about the future. And it's not something that I consciously do, but then whenever I start thinking about the future then I start having so much anxiety.

Right. Mm-hmm. 

Deonna: Me too. 

Rhandyl: I just focus on the day, the present, , maybe a couple of days ahead, but I've just learned anytime that we have something planned, I don't even tell my kids, like even my typical son, like if, like for example, the other day we're gonna go to the movies I have this superstition or just something about I'm not gonna let them get excited about anything unless it's [00:32:00] happening. And so, like right before we get in the car, I'm like, we're gonna go to the movies. And he's like, what? And I just have this thing I do. I cannot I don't even like to say if my husband and I are planning on going on a trip or something, like I don't wanna tell anybody. I don't want to even make plans about it because I'm like, it's just gonna not happen. Which is not probably the best way, but I, I don't know. 

Deonna: Barrett's gonna tell his wife someday. My mom was just flying by the seat of her pants. She never knew what was gonna happen. She just decided things like sporadically and you're gonna be like, yeah, that's not really how that was, but okay. 

Rhandyl: Yeah, I'll just let him think that I'm spontaneous. Whatever. Yeah, she was fun.

Stacy: See, silver lining, different perspective. 

Rhandyl: Yeah. There you go. Yeah. So that leads us to another question that we wanted to ask you. What expectations did you have to let go of throughout the last 13 years? [00:33:00] 

Stacy: All of it. Yeah. Mm-hmm. People would come up to us and say, do doctors think that she's gonna walk? Oh, she's doing therapy. Does that mean she's gonna walk someday? Really these days doctors no longer say, your child won't do this, or your child won't do that, because doctors are starting to realize that when they start to put limits on kids they start to prove them wrong. And doctors don't like to be proved wrong, so they start to notice that you just can't say what they're gonna do and what they're not gonna do anymore.

And so usually our response is, I don't know, maybe, but , we know realistically that she's not gonna walk unless Jesus heals her. Mm-hmm. . And we've come to terms with that, but people around us haven't come to terms with that.

Rhandyl: Yeah, we talk about that a lot. 

Stacy: Yeah. And it's, I think you guys have talked about like the oils before and like [00:34:00] special treatments before. And here you should go to this doctor who uses , blank, blank, blank. I don't even know how to speak that language. Yeah, unless it's a medical term, but. Yeah. And you could lay on the table and she'll tell you what kind of supplement she needs, and I'm like, bro, I don't even got time for that. So I can barely keep up with her. It gets 

Deonna: 3000 medical. 

Stacy: Exactly. They, the insurance won't build a ramp for our house. I'm pretty sure insurance isn't gonna cover that. , But anyways,, we've just learned to not have expectations and then when those wonderful things happen when we see those wins that we weren't even expecting or that we've been striving towards through therapy and things like that it makes it even better because those expectations weren't there in the first place.

Deonna:  I love that. I think it is smart. Even as a parent of a typical child, if you get your expectations just way up high, it's just, it's [00:35:00] such a dangerous thing to do to yourself and. You even, I can't speak about what it's like to have fertility issues. I know some people that have that, but I mean, your expectations are just so high when you're 22-year-old girl and you wanna have kids and all these things and not all of our lives end up the way we thought.

And there's girls who mm-hmm. Never have a kid in the traditional sense. There's girls who have to go through all that IVF stuff and either do or don't. There's girls who, I mean, there's just like a million different scenarios and you're just never, I don't think you're ever prepared 'cause you just have your expectations set where everyone else around you is having this normal experience and I got to live that for a few years and didn't even know how. Easy it was, and all that. But yeah, I mean, even the expectations. I [00:36:00] remember having just a complete meltdown after they told us she probably wouldn't, be a mom. She probably wouldn't do this. She probably wouldn't do that.

And , I didn't realize how much of my expectations for my life were tied up in her, like mm-hmm. Especially with daughters, I feel like this happens a lot. I was like, oh my gosh, I'm never gonna plan a wedding. I, and now I'm like, okay, I'm, that was dramatic for me to say those things, but I, but really that's how I feel about some of that steel.

It's like I didn't realize how much of my life, the expectations were tied up with what I thought maybe she would do. And that's, that was a tough one for me too. Yeah. 100%.

Rhandyl: Yeah. Expectations. It's kind of like my planning situation. I just don't expect much. And even for my son, he is four and a half. He loves the outdoors and playing. , But we haven't even pursued any sort [00:37:00] of, sports leagues or, all these things that if I would've had, just my typical, what I thought my life was gonna be like, situation, we would be doing all of that all of the time.

And it is just like, why let him play outside. Mm-hmm. Let him be a little boy. I mean, obviously if he starts showing interest in asking about things then, but yeah I know that, my expectations,, with our story, it's different than Deonna's because you got to have Allie as your typical little girl for four years. And of course you were gonna have all those expectations for her. And that's part of the trauma of what happened and, for me, I had no idea. Yeah. We didn't even find out the gender of Remi our first I thought I was having a boy the whole time, so I at least didn't have the expectation of throughout my whole pregnancy of, oh, I'm gonna have this little girl and, make all these plans. But yeah it's just different. 

Deonna: , so what moments feel really sacred to you [00:38:00] that other moms might overlook?

Stacy: I think there's times where as much as Addy's a teenager now and like hanging out with mom isn't cool. There's times where we're sitting and waiting for a medical appointment or we're sitting in a situation that she isn't familiar with she just very lightly will reach out and. Touch my leg or grab my hand and hold my hand very intentionally. Mm-hmm. Mom, I know you got me. And those are those moments where I'm reminded that I'm her person. We're her person. And that she trusts us. That trust has been built. And it's a little bit different from us in the beginning because that trust had to be built with some of the trauma she went through as an infant.

Rhandyl: Oh yeah. Mm-hmm. Um, but those little moments where, where she just reach reaches out and safe place. 

Stacy: Yeah. And those small moments that just remind me that she trusts us and that she knows we got her and that we see her. 

Rhandyl: I love that because like you said earlier,, God chose [00:39:00] you guys to take this little girl that was so neglected and all the trauma that she had to go through and y'all had to build so much trust and to just be able to see it now in the scary moments of her life still, the fact that, you guys are who she reaches to and you know that okay, we're good., Like she knows , but just hearing those little things, it's just, yeah. Yeah. It's so awesome. 

Stacy: Often things aren't understood until you look backwards, right? Very true. 

Rhandyl: So has your community shown up well for you? And if not, where have they missed the mark? Have, do you have a big support group there locally for cp ,

Stacy: I would say that the area that we live in is an. Area that not a lot of people get to experience. Our community as a whole we have access to a lot of wonderful things for Addy. I'm gonna start with her school. It's called Woodlands and [00:40:00] my perception of her school before Addy went there and our perception now completely different.

I would drive by that school and say, oh, those poor people, they probably just sit in wheelchairs all day and, I don't know, watch movie. I don't watch movies. Her school they have adapted this program called the MOVE Program. And basically from the second she gets off the bus until the second she gets on the bus on the way home, she's not in her wheelchair. They get her off the bus, they put her in in an activity chair a stander, and it's mixed up throughout the day. She's moving and grooving. She's biking down the hallway. She's Wow. When she gets off. That's amazing. The bus in the afternoon. She looks rough, but I love it. I love that. That's funny. So her school is amazing. Her teachers, her aides, I mean, [00:41:00] everything about it is just a big family there. It takes a village and they're part of our village. Mm-hmm.

I would say our church family is very wide-eyed open to the disability community. And they're adapting a program to have leaders equipped to welcome in more of the disabled community. A lot of the disabled communities don't go to church 'cause that's one extra thing that they have to deal with or mm-hmm. Yes. Will there be accessibility? Is there somebody who feels comfortable with my child? And so they're working on getting a program set up for that. And that's so encouraging to me. 'Cause then I can say, Hey, friend come to church with us. Yeah. We wanna love on you. Mm-hmm. So there's that.

And I would say, wow. Lastly, one of the biggest things we found six years ago was a cheer gym called CL Spirit. And they're about 45 minutes away from our home, but it's the best 45 minutes drive spent every week taking her to cheer practice [00:42:00] because they adapted a program into the All Star cheer gym that they have called Cheer Abilities. Mm-hmm. And cheer abilities is something that really is at a lot of gyms across the states. Mm-hmm. So if you're listening and you're like, I wonder if there's a Cheer Abilities program in my state , hook 'em up with me, I can help you find one. Mm-hmm. Or just google it. She cheers. Every week we go to competitions and she's on a cheer team with other individuals who are differently abled from autism to down syndrome and to all kinds of things. And yeah, it's the most beautiful thing you'll ever watch. Mm-hmm.

I remember when they cheered for the first time at a competition 'cause they go to competitions and you better believe they win first place every time. Oh my goodness. Yes. They don't actually get scored, but I remember the first time they cheered irrelevant. I know, but this is what gets me is the first time they cheered one of the girls on her team, her name is Grace, she came off the [00:43:00] stage and she was like, we got first place. We got first place. And we're like, they don't even score you. And, but we, but again, perspective, she's spread the word. We won. Yes. We were like, you know what girl you did get first place and you better believe they get first place every single time they compete. So Yes. I'm obsessed.

It's inclusion at its best. I love that. And it's not even just for them, but it's been interesting and amazing to watch the other girls at the gym some more slowly. Others not as slow, begin to gravitate towards them and be more comfortable with them. And now Addy shows up to the gym and it's like, hi, five. How was school today? Unprompted, the coolest thing, she looks at me like, mom, get out. This is my gym time. Like my friends are here. Literally, if you could see the look in your face, 

Deonna: well, I have to be here, but whatever. Oh my gosh. So that is, I mean, that's such a good feeling when [00:44:00] somebody does that to your kid and mm-hmm. And. That kid doesn't even realize the impact it's having on you.

They might know that what they're doing has an impact on her, but like that has happened to Allie. Some, and , I'm over in the fetal position, crying and then, they're like, they don't get it like it, and kids are either really special like that or they're just not.

That's kind of my opinion. I've experienced amazing kids who just treat Ally, like she's just one of the group and then, you have the horrible children as well. But it's so amazing when the kids are like that at cheer. That's such a cool story. I love that. 

Stacy: Yeah I agree. We'll be at competitions and you'll see some of the kids kind of lurking. They'll look at her, they're trying to figure her out, and they're like getting the courage to come up and say something to her. And again, they're few mm-hmm. But just this weekend we had a competition and a girl came right up to me. Now, she wasn't looking [00:45:00] at Addy, and again, this is something that can be taught, but she was looking at me saying, I just wanted to tell you that your daughter did such a good job performing, and she is so pretty. And I'm like, pretty I've never heard a little girl say, my daughter's pretty.

And I was a wreck. Complete wreck. I had turned to my husband. I said, I'm gonna need to get outta here. My have to leave. And this girl was maybe 10. Mm-hmm. And completely unprompted mom wasn't around. And I wanted to be like, where's your mom? I need to talk to your mom. I need to tell your mom how incredible you are. Yeah. And I, that's happened before too, where I've kind of tracked down mom and I said, I need you to know, that your daughter. Completely changed my day because their moms need to know too that their kids are making a difference.

Deonna: Well, and I used to think it was like a learned thing that parents were teaching their kids to be that way and that's why they would do these things. But the longer I've been doing this, I [00:46:00] think that is sometimes part of it. Sure. But I think there are just kids that are, I don't know, like they're just amazing human beings already.

And there are kids that just gravitate towards my kid. And I don't know if it's a learned thing. I think it's just who they are and how they view the world. They look at your daughter and it's the same as anybody else. And so those people are so amazing when they cross paths with you. 

Rhandyl: I think it's a gift also, like especially mm-hmm. The kids that just instantly know how to interact with our disabled kids. It's, I'm always just taken aback 'cause I was not that kid. I remember being so scared to send Remi to public school because, I mean, I came from a really small town situation and we did have disabled kids, but I was just so uncomfortable all the time, so.

Mm-hmm. But, now when you see kids that are just [00:47:00] naturally intrigued and interested and interact so wonderfully. Like one of my good friend's daughters, she's amazing. She has been since she was little with Remi. And it's this great feeling. And I, I, do think it's a, gift that we're, that they're given that , they're probably going to have something to do with the disability world but I feel like those kids that we're talking about are going to hopefully help and continue to grow the future of inclusion. 

Deonna: Well, it's like God gives people spiritual gifts and I kind of grew up thinking that's oh, well I'm gonna teach Bible class or I'm gonna do this or that.

But the older I get the more I realize that a lot of people do have this amazing spiritual gift to be around disabled individuals. And it is something like May was talking to my mom about this and I was saying what you were saying I didn't feel good at this growing up. And my mom's like, well, you would always say hi [00:48:00] to this kid or that kid.

And I'm like, but yeah, okay. Maybe I said hi to them, but that's not enough for me. Now as a parent of a kid, when somebody says hi to Allie, that's nice. But , when somebody's actually creating a genuine relationship with Allie, that's totally different to me than just a kid being like, hi.

And so, and I'm sure y'all feel kind of the same way you want more now as the mom. And sometimes we don't get that and it's really hard for us, but when you do, it's oh my gosh, amazing. 

Stacy: . I think it's true. Like we've been talking, it's learned. Sometimes just a gift. But on the flip. , I think, what started this internal mama bear in me. Several years ago we were grocery shopping. And Addy, she was making all her happy noises. She was happy. She loves to see kids, so when she sees kids, she gets really excited and starts, doing all her fun noises. And we are in line at the [00:49:00] deli. And this little kid was intrigued by Addy and he turned to his father and said, dad, why is she acting that way? Totally innocent. Mm-hmm. And unfortunately, the father looked at his son and said, quit staring. Quit looking. Turn away. Mm-hmm. 

I remember the rage just pooling in my soul. Yeah. For that child, because that father taught him nothing in that moment. Mm-hmm. Well, nothing good. It's the worst thing. He could have done nothing good. And I feel sorry for that kid 'cause he didn't get the opportunity. Mm-hmm. I guess I'm more sad than mad, yeah. Because I, I want more parents to allow their kids to ask questions and so I think about that moment a lot and I wish that, that, that father would've handled that differently, but he didn't.

Deonna: Well, and it makes you wonder what we would've done. I just don't know. I mean, if I had been him, [00:50:00] but I don't think I would've said, look away, don't stare. I might have just been like, hi. I think that's probably what I would've done, but I just don't know. I mean, it's kind of like saying at the very least you're saying like, I don't know.

I don't know what the old Deanna would've done. I just don't know. Mm-hmm. I know what the new I do remember we saw, I don't know if I've ever told the story before, but they have a huge science museum in Houston that me and Cole would go to a lot. And when Allie was in the ICU there for all those fun months and there was a kid who I think had some sort of cerebral palsy, we kept running into the kid over and over and over all day, at all the exhibits. And the mom, I just kept looking at the mom and thinking. This is going to be me in a few weeks. I'm gonna be her. And I was staring at her all day, probably just seeing is she okay?

Is [00:51:00] she happy? Is she smiling? And I realized that my son, who was like seven at the time, he was looking at the kid a lot and I said, Hey. Quit looking at them so much and he's like, you're looking at her too. And I said, I know, I just, I can't help it. I know this is about to be me and you and because there were siblings with them and everything and I wish I would've just went and talked to her, and now I do. I mean, I've met so many people out in public and Target and all these different places, but back then it felt like I couldn't go talk to her because I felt like I didn't know enough, maybe about her experience or whatever. But it was funny 'cause I just was so into her and watching her and I don't know, it was just like a weird, I just thought of that, but it was such a weird day watching my future walk around, kind of. It was crazy.

So how has [00:52:00] parenting your daughter affected y'all's marriage?

Stacy: Oh, gut punch. We go through it. I mentioned before that, we, meet in the living room at the end of the day and that might be the first time that we've actually greeted each other or stood face to face that day. And and then by the time a day is done, we don't have anything left to give. Yeah. And a lot of, and a lot of times that's just where we're at and it's it's very vulnerable. We're learning to be more vulnerable with other couples, couples go through a lot anyways. Marriage is hard. Yeah. But when you're raising a disabled child who depends on you for their every need marriage part definitely gets pushed to the side, not on purpose. Mm-hmm. You can be as purposeful as you want to be.

We often say, I miss you, and that kind of clues us into, okay, we need a date night. Yeah. Mm-hmm. We need to be more intentional, and we have to [00:53:00] fight for that. We have to fight for that time. Whether that's putting aside other things that we wanted to accomplish and just sitting together and watching a show 

Rhandyl: being intentional.. I can relate to that. Yeah. It used to just be natural and then Yeah. It's whoa. I mean, multiple days can go by when you're just in the mix of it. It's just, yeah. Mm-hmm. Something that you definitely,, I think we're all three very fortunate to all be still married after this happening to our lives. I'll be honest. I mean, it doesn't mm-hmm. , I know there's different statistics out there, but name easy. Yeah., It's uh, very challenging and, you have to be very intentional. Yeah. 

Deonna: Well, and like what we were talking about, trauma, when you're operating at a just high level of awareness.

Mm-hmm. And I mean, there's times where me and Dane are so stressed out by the possibility of her going into the hospital or this or that, whatever, that, you can just snap because [00:54:00] you live at such a different level of stress. It's mm-hmm. It's like you can't even explain it to somebody outside of this world.

And so, yeah. It's tough. It's tough. And I know what you're saying. Saying about just kind of not connecting. Sometimes it's really hard. 

Stacy: Yeah. And I guess, like what we experienced in the fall with that trauma mm-hmm. That, that took the whole marriage is rough to a whole new level. Because now we're dealing with, viewing trauma and, and that takes a while to get through, to dig through and I'm very, I'm a outward processor. I will process out loud for days and my husband's not, he deals with things differently. And so now we're dealing with grief and trauma and all that other stuff. And again, I relate to you guys so much more now. Mm-hmm. 

Deonna: Yeah. My husband's like that too. He processes everything inside of his brain. He doesn't really wanna talk about it. And then I'm like. Just spewing out every single thought I have. [00:55:00] And he's like, I just need a second to even if if she has some sort of traumatic event, like a Dsat or something, I will just be like, whoa, that was crazy. Okay. Oh my gosh. So we did the, you know, and I'm like just going through it in my head of what we should do next time, and he'll go in the room and he'll just sit there quiet by himself and just, I think he's thinking through it, but he just can't talk about it yet. So we, we both have our different ways of ways dealing with it. 

Stacy: And sometimes we view that silence as. He has nothing to say or he's not feeling right. Mm-hmm. And it's not bad at all. Doesn't matter. It's, yeah. 

Rhandyl: Mm-hmm. I think my husband and I are both more internal processors and so I kind of wish one of us was , more like you two, because after traumatic things that we've had, we just won't talk about it. It's just, it is what it is. And then sometimes it'll be like years later and one of us will bring it up. Oh [00:56:00] my gosh. And then we'll finally be like, yeah. Oh yeah, I was thinking the same thing. Or, oh, I was on the totally different page. I don't know if we both have this internal process and then we get through it and then it's just probably really bad but yeah, I wish I could be a little better at that, but, 

Deonna: That's how I was initially, but now when something really bad happens, I'm so like jaded that, it'll happen and our nurses are like, traumatized and I'm like, whew, yikes, that sucked. Okay, I'm gonna go take a shower. And they're like, what? So, I don't know. I'm all over the place. We're all crazy.

Rhandyl: So Stacy, when was the first time that you realized that you had to become the expert? Is there like a moment that you realized,

Stacy: I don't know if there was a moment, but a lot of times you don't get the whole story, mm-hmm. When you're seeing different specialists and and they don't know your child on a daily basis. That's what it comes down to. Right? Um, They don't live with us. And uh, I don't know. I [00:57:00] guess , it just was something that along the way I didn't want to take what they said as complete fact. I always wanted to make sure that our specialists, our doctors were people that we trusted and that we felt comfortable with, of course. But they would share things. And then I would go home and I would dig deeper.

And maybe that was just part of my journey is making sure that I understood what was going on and that I could articulate it to other people. I guess I just didn't have a choice.. I had to be the expert and if I couldn't speak the language of our home and her language 'cause it were her voice. Yeah. And if we couldn't properly communicate that to a medical specialist then we were never gonna be on the same page.

Rhandyl: I totally get that. Yeah, that's true. 

Deonna: Get educated or they're not gonna make it, I mean, that's a tough realization to have. Yeah. 

So if you live the caregiver life like us, we're just hustling and grinding all day. If you [00:58:00] had a day off to just do whatever you want, either by yourself or with somebody, what would you do?

Stacy: I always say that one of my favorite things to do, I'm laughing. My favorite things to do is just go to Panera Bread, get a bowl of soup, and just stare out the window. Yeah. And just stare out the window as long as I could until I was sick of staring at the window. Oh, man. I don't I guess it just takes me outta my world a little bit. My brain is always going, my brain is always 10 steps ahead, thinking about what's next? What does she need, what does she thinking? What's wrong with her, I am my daughter's own hypochondriac. And every little change or different movement or a different moan it's exhausting on my brain.

Mm-hmm. My brain is more tired some days than my body. I often tell my husband sometimes when I need a nap, it's not, 'cause my body is tired and it is tired, but my brain [00:59:00] is tired. Oh, I can totally relate to that mental energy mm-hmm. That it takes. And so, I would just love to just go have a coffee and just stare out the window and watch other people go about their lives. Mm-hmm. 'cause I think about when we're at home and we're doing our caregiver thing 24 hours a day, the world is spinning still around us. But we don't always, see that the world is still turning around because we're stuck in our patterns every day. And sometimes , that wears on me is the daily routine after routine. Now, I love the routine. If we were out of the routine, I'd be like, I missed the routine, right? Yes. But then the routine drains me. So yeah, just a good staring date by myself. Heck yeah. I love that answer. 

Deonna: Hey, I love Panera. I now I wanna go eat there tomorrow. I love that place. That's hilarious. I love to people watch too.

Rhandyl: Yeah. And my daughter Remi she loves people watching toos and You talk [01:00:00] about That's fun, her sounds because Remi she's the same way. She's nonverbal. She will say a few words, vocally, but most of the time it's sounds mm-hmm. And like you were saying, her happy sounds excited sounds she has the same thing. She has her mad sounds. She has her trying to get my attention sounds just, yep. And it's it's a whole language that once you, like her nurses that have been with her for years, like they know her little sound language. But yeah, it is, it's exhausting because then you're like translating it to others when they're like, mm-hmm. What's going on? And I'm like, oh, she's fine. Or, oh, she's mad because I didn't do this. I didn't let her chew on her seat, buckle strap today. Whatever, I can totally relate to what you're saying

Stacy: I feel that, yeah, my mom will often say, how did you know she wanted that? Or How did you know she was saying that to you? And I'm like, oh, you mean she tugged on her shirt, winked her eye, and looked down the hallway or whatever, and oh, well, she means she's tired and she's ready for bed. Or, she was like, how did you know? I'm like, I just, I [01:01:00] know. I just know. Yeah. 

Deonna: We know everything about them. I'm, oh my goodness.

Rhandyl: Okay, Stacy, so finish it up. What are you most proud of, not just about Addy, but about yourself over the last 13 years?

Stacy: I think I'm most proud that I've accepted who I am today and how I've got here. Mm-hmm. The journey has not been easy. I felt like I lost myself along the way many times. I went from having a full-time career in radio having my own afternoon show. She's saying I need to back away from the on-air portion and just work behind the scenes to then. Going to four days a week to three days a week, eventually down to two days a week. And even at two days a week, I just couldn't, I couldn't catch up couldn't get it together. And it was the hardest thing, going to my coworkers and saying, I think it's time. Mm-hmm. And I think they knew it was coming. They knew it was coming. They saw my day-to-day challenges, they saw my tears in the bathroom, [01:02:00] meltdowns. Mm-hmm.. And I grieved that for a long time, my identity of losing my career and becoming a full-time caregiver.

And so trying to figure out what , that new identity looked like. And when people would say, what are you doing nowadays, they'd run into me And Are you still on radio? And I'd say, no I'm just a mom. And I would catch myself saying I'm just a mom. Just, yeah. Oh my gosh. If they only knew, right? Mm-hmm. I had a hard time saying what I do now because I didn't feel like it was enough. Mm-hmm. And again, that was part of the grieving process, and

so I finally had to say, Stacy, tell people what you do. Tell them you are our full-time caregiver for your daughter. Um, And it's the best unpaid job I've ever had. My boss is just sassy. So's. Mine's demanding. So demanding.

But I've learned it's okay. To not be [01:03:00] okay. It's okay to ask for help. It's okay. To say I need a break. All those things, and to give myself permission to be vulnerable, and I'm still working on that that whole vulnerability thing. But it's okay that you're not the same person that you were 10 years ago, and a lot of times it's even better. 

Rhandyl: Yeah, a hundred percent. I love that.

Deonna: I think that it's not only okay to not be who you were 10 years ago, there's times where me, , I've been doing this a less time, but. The old me couldn't do what I do now. I've changed so much that the old me, I don't even really like that girl anymore. And it's not that there was anything wrong with that girl, but it's just that girl couldn't do this. And now I can. And , it takes a lot of time to get to the, that point, but yeah. Yeah. I know what you're saying about that for sure. 

Rhandyl: Yeah, no, I can [01:04:00] totally relate. 'cause I've had to back away from a full-time career for years in the beginning and then slowly work my way up to working again and then boom goes the dynamite and Right. It's just crazy. Because , I remember saying that for a long time, the years that I wasn't working or I was being a full-time mom, full-time caregiver, people are like, what are you doing now? And I'm like, and I would say the same thing. But in my mind, when I would say it, I was like, but it's so much more, yeah. It's, that's not mm-hmm. I mean, being a full-time stay at home mom for typical kids is a lot. Yeah. I will. I mean, but it's not anything in comparison to what we do full-time. So, no, I appreciate you sharing that.

We appreciate you sharing your story. We could talk for hours. You are just so fun. Mm-hmm. And relatable. Mm-hmm. And we are so excited to share this episode with our listeners and, is there, anything you wanna share with listeners about how to , follow you

Stacy: yeah, I started a [01:05:00] page called Raising Addy a while ago. Mm-hmm. And for the sole purpose of it was just too hard to catch everybody up. Anytime I ran into somebody, what's going on with Addy, Hey, I saw you had an appointment, blah, blah, blah. I'm like, I'm just gonna, because really I, I wanted people. To see what life is like and to see mm-hmm. But also see her joys. And all the highs and lows like you guys talk about all the time and our buffaloes. But that was my original reason for starting the page and now it's about advocacy. It's about helping people understand. And so it's just raising Addy on Facebook and on Instagram and you're welcome to join us and just come along on the journey and we share lots of fun things that she does and I'm trying really hard. One of my goals in 2026 is just to be a little bit more vulnerable. 

Rhandyl: Oh, I love that. We'll definitely tag raising Addy on our show notes . So thank you so much. We've enjoyed this. 

Stacy: [01:06:00] Thank you so much for having me. Thank you for doing what you do. I don't feel so alone these days.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.