Lindsay Raising Eva

In this episode we talk to Lindsay Sherbondy about:

• her daughter Eva's life altering accident,
• what life has been like for their family following this accident,
• how God has used this pain for good,
• and her art and how trauma affected it.

If you would like to learn more about Lindsay's art, visit her store Lindsay Letters HERE>>

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Transcript

Deonna: Hey y'all, welcome back to Raising Disabled. So before we get started, we're just going to chat a little bit about what's been going on in our lives so you guys get a little insight into what our day to day is. It's the end of the summer in Texas, basically. I know in other states, they don't start school till like late, quite a bit later, like after Labor Day, but.

Not how it goes in Texas. We start in the middle of August and so we have been doing all the back to school stuff. Have you guys got the school shoppings list done yet? 

Rhandyl: No, , we went to registration this morning. Yeah, but yeah, I feel like every summer is getting shorter. It is. It seems they're in school so much longer. I don't know if it's just because they have such longer holiday breaks than they used to or what, but. I don't know. It seems like it's flown by. 

Deonna: Yeah, this one went by pretty fast, but , I have to go register tomorrow because we're in the same school district, but we were waiting till tomorrow. Probably a mistake will be with all the procrastinators, but. 

Rhandyl: We waited forever in line. We got there first thing. So I. Everybody had the same idea. 

Deonna: But yeah, the last couple of weeks, Allie had two different camps and my son did one of them with her. At our old college, but her favorite camp that she did was this Theater camp it was with moonlight musicals here in Lubbock, which is like a community theater thing But yeah, it was so fun. It was they did finding nemo jr and 

Rhandyl: Oh, fun. 

Deonna: I didn't know how that was going to go. You don't ever know how inclusive a group's going to be, or a camp, or, cause Allie is cognitively the same as her peers, so you send her to these camps with her peers and , , I mean, I was nervous I just didn't know, but she did really well and she had a little speaking part that was really small, , but, In her mind, she was the main character of the whole show. So it was pretty funny. And we were cracking up. She was making some funny faces. Like she was definitely taking it very seriously, but she was the character bubbles that like, remember in Finding Nemo, the. Little fish that likes when the bubbles come out. Yeah. Yeah. That was her. So she would just say bubbles over and over. It was funny. That's awesome. But yeah, she had fun. And so my parents and in laws came in for that and watched it. 

And then so my son wanted to get baptized after that. And so , it was cool because after her play was over, he surprised them with. Saying that he was going to go get baptized. And so that was just a really cool ending to the day. And we went to our old college. They have this outdoor baptistry place where you can go get in and get baptized out in the middle of their, Yeah, mall area. So he did that and it was cool and emotional and all the things, you know, it's like

Rhandyl: So that was on the same day. It was so cool. Like yeah It was so awesome that all the family, grandparents and everybody got to be there to witness both things. That's awesome. 

Deonna: It was, it was good. So we were happy about that. He was super excited and happy. But that's pretty much what we've been up to.

We've been watching a lot of Olympics. Have you guys been watching that nonstop? 

Rhandyl: We haven't changed the channel since the Olympics started. We love the Olympics too. 

Deonna: Us either. , me and Dane both love the Olympics. I have so many good memories of, Watching it back in the nineties. Like we were reminiscing about like the 1996 girls, gold where member, like that Curry strug, broke her leg or something.

Rhandyl: That was still, I remember watching it live. 

Deonna: Oh, me too. Like this girl. Today when they were competing, she had a cut on her face and I was like, I think that would just take me out. Like even having a basic cut on my face. I guess your son's not really. Showing that much interest or not, but my kids are into the Olympics, but they're just, this generation's not, I don't know if this is just my house, but they're just not as into it as we were growing up. 

Rhandyl: And, whenever track and field starts, maybe Cole will get into it because that's my favorite. part. 

Deonna: He's been into it. Allie's been like, why are y'all watching this so much? She's so annoyed, but she did watch Simone and everything today. But yeah uh, we watched last night the guy in glasses, that's Steven. Cole used to wear glasses similar to that. And he's making guys with glasses cool again. So it was funny. Oh yeah. 

Rhandyl: That was such a fun celebration to watch them. 

Deonna: Yeah. It was so cute. We loved watching that, but we've been just watching that 24 seven, much to Allie's. 

Rhandyl: Oh yeah. Remi's not a fan either. Like tonight. Yeah, we have it on because she has her little routine.

She eats dinner and then she gets to pick a movie that we usually watch in the living room until she goes to bed. And yeah, all week we've just had on the Olympics and she's just hello. And so I had to bust out her Tony box and all of her toys and it kept her busy. I'm busy for a little bit, but 

Deonna: she's like, why are we watching people swim? This is not interesting. 

Rhandyl: But I was like, we were watching women's rugby. I'm like, yeah, tough, tough ladies. 

Deonna: I haven't watched that, but that Ilona Maher . She is so funny on Instagram. , I followed her last week and she makes me laugh so hard. So I haven't seen her actually play rugby though. I've only seen her joking around. Man, that was tough. That's how I wish my body was for what I have to physically do every day. I wish I was a lot stronger. I don't know, for transfers, it'd be much more convenient if I had a rugby body,.. 

But so you had some excitement in your life that was not. What you really wanted. So tell us about that. 

Rhandyl: Excitement is one word for it. So yeah. Bad excitement. Yeah. So just a trigger warning for those with emergency situations hospitalizations. Decannulation, scary things, just this is a trigger warning,

. Cole and I and our son Barrett, we had planned to go home to Shamrock where we're from. My in laws were hosting this ex students reunion that they have every two years. And Cole and I were going to help them with that and we had just been to Shamrock on the 4th of July and taken Remi and nurses and all the things and there's just some trips that we just can't. Manage to get everyone scheduled to be able to go and so whenever yeah, and I leave town Without Remi. We always make sure we have caregivers not just her nurses, but caregivers staying at the house yeah, 24 7 and they we always have medical release forms that have been signed and witnessed and if there's ever an emergency 

right before we left Cole and I checked all of our cameras, made sure that they were on and working, connected to Wi Fi, that the view was right, all the things, and made sure that All the medical stuff was signed and , I changed the batteries in the emergency button for the caregiver that stayed because it was You have a doorbell, right? Yeah, it's like a digital doorbell. Yeah, us too. Yeah. Then we hit the road and we get there. It was a Friday night and , we have some family in town, we have dinner, and then Cole and I went and we were hanging out with some friends, and then, , 

it was a little before 5 a. m., we got a call from the caregiver that was staying at the house, and Remi was having an emergency situation. . Yeah. So I'm on my phone. Cole immediately pulls up the live camera footage and I'm talking both of the nurse and the caregiver through everything. And then Cole calls the other caregiver that we had put on the medical emergency list. It's also one of the nurses. . Yeah. She literally gets there. I think five minutes. It was nuts. Oh. From the phone call. Yeah. 

Deonna: And she probably doesn't live five minutes away. 

Rhandyl: No. No. No. She gets there and they had already been working on her for quite a while. She made the call.

Deonna: It's like bagging her and stuff. 

Rhandyl: Yes. Bagging her. She had decannulated. She had woken up in the night and when she wakes up in the night, sometimes she Goes crazy and she's crawls all over the bed. She pulls up all over her bed she's just like whining out throwing her little stuffed animals everywhere and she was just being extra silly and She threw herself back and I think her knee was on her tubing and she ended up Anyway, and so looking at the time that we think she decannulated to when they got her trach back in. I think it was potentially like 10 minutes. So it was a long decannulation.

Deonna: She can go off vent, but not always, right? And not when she's asleep. 

Rhandyl: Yeah, not when she's Asleep or upset 

Deonna: That makes sense. 

Rhandyl: Yeah, so we also called a neighbor, our really good friends, the nurse practitioner and nurse, they live just two houses down, , they came and brought their vehicle down to help drive them to the hospital and , they get to the hospital around, 6 a. m. Yeah. By this time, Cole and I are already halfway there. It's a three hour drive from Shamrock to Lubbock. And we made it in less than two. . We put our Suburban to the test and it did its job, so in , between all that I call . Remi's pediatrician, and I am obviously panicked and she went ahead and called the ER ahead of time to let them know we were coming. And the nurse prac our neighbor that. took her, also works at this hospital. So he knew some of the people there and, Oh yeah. Told them our instructions and then, they called us and, we were talking to the doctors on the phone, 

 Basically what happened was once she decannulated and her oxygen saturations had gone down so low, once they finally were able to get the trach in and start bagging her, she Went into a hypoxic seizure, and she just couldn't snap out of it even though her oxygen levels were back up She just couldn't snap out of it. And so whenever that oh Yeah, whenever that happens We have to take her in and sedate her to let the ventilator breathe for her because otherwise she's just fighting the vent She's yeah everything we're doing because she's just in this Kind of the seizure activity. Poor girl. 

Yeah, so that was scary. By the time we got there, she was sedated and breathing well on her own ventilator, and I just crawled in bed with her, I like lost it when I got there. Oh, yeah. The whole way, all I did was pray that, number one, she was okay. And number two, that Cole and I made it there alive cause he was driving like a crazy person, but yeah, 

Deonna: we've had an experience like that too. I'm like, oh, I'm like, we can't die cause we're the only people that know how to take care of her. So chill out, dude. 

Rhandyl: Yeah. I was like, oh my gosh. She was only there a little over 24 hours. , biggest fear was that she was going to have an anoxic brain injury because of how long, we didn't know exactly how long her stats were low, 

Deonna: well, I'm glad she's okay. That was so stressful. When something's wrong with your kid. It feels like something's wrong with my kid. It's a very personal thing to go through. And it's like when any of us tells each other Oh yeah, my kid's in the hospital or something. It just like weighs on you that whole time. , I mean, And that's nothing compared to what the parent in the hospital is dealing with. But Yeah, it's terrible.

Oh my gosh, I'm glad she's, didn't have any like permanent ramifications from it cause that's possible. 

Rhandyl: Oh, I know. She had some, yeah, she definitely had some guardian angels around her that night. Man, , It's a miracle. But yeah she's great now. Went to school registration this morning. Yeah. She just didn't want us to go home. Needless to say, we didn't make it to the ex student's reunion and we literally just left our son there. I ran into my mom and dad's room and I was like, there's an emergency. You've got Barrett. And , we left before they could even get out of bed. We were already gone in the car. 

Deonna: We've done the same thing. We have left Cole with my parents, which he doesn't care, but you just got to do what you got to do and, it's hard though because if you never leave, then you get really burned out. So it's like you have to leave them sometimes and have some sort of break or, I don't know, but then. 

Rhandyl: There was so much guilt about that for me. And Cole really tried to talk me through we have to try to live our lives like we had everything set up, but it was literally my worst nightmare coming true. And so it was just. Yeah, being away. Yeah. I'm still. It's very, it's so much PTSD but she's like I said, she's good. 

Deonna: I would feel the same way. Yeah. Yeah I mean it's like I'm telling you, don't feel that way there's nothing you could have done, but if it was me I would be like, oh gosh, like what did I do wrong, but you can plan for everything perfectly, and , they're still so fragile, there's nothing you can't plan for everything, like we've tried, and it's just You know, impossible, but, yeah, I'm very relieved. I was, when you told me she was okay, I was like, okay, I can like be normal again. Thank goodness

 So that's just what we've been up to for the last few weeks for good or bad or all in between, honestly, our lives are crazy. Like today my husband was like, how was your day? I was like, just some extreme highs and lows, no big deal. That's just our life. It's a crazy life and it is what it is, but. So this time we are talking to Lindsey from Lindsey Letters and it was a really good conversation. She has a very similar story to mine. It's obviously different, but an injury that happened with her child and so we had a really good time with her. She's a lot of fun and so we will see you guys there. 

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Deonna: hey y'all, we are back with Raising Disabled and today I am super, super excited because we have Lindsey, am I saying your last name right? Sherbondy? Okay, I didn't want to say it wrong. So she has a company called Lindsey Letters and it's so funny because, I have followed Lindsay for a really long time.

I don't even know when I started following you, but back in the day wanted to learn calligraphy and like hand lettering and all that stuff. And so I just started following all these accounts and yours was one of the ones. And I was learning through Instagram and all that stuff. And I, got good at it. I don't have as much time to do it anymore as I would like, obviously. And I remember when your daughter had her accident, it was just like, what? I mean, it was so crazy to me to see you going through something like this, because I feel like it was one of the first times. It just didn't make sense.

Like you were this artist I was following this couldn't be happening to you. And I remember just following your story in the beginning. And then it happened to me a few years later, a very similar situation. Well, when was yours? Oh, it was August, 2019. Yeah. So mine was a year later, almost about a year later. And I just it's so crazy because I felt sick for you. And then I'm going through the same thing, like a year later. And it's just, it's worse than I could have. Ever imagined. Like it was like, I remembered back to you and thought, Oh my gosh, like how I feel. That's how she felt. I can't believe it was that bad.

And you just kept going and you were still creating and doing these things, which we're going to talk about here in a minute. But. I'm just super honored that you're making the time to talk to us. Cause like we've said with all of our parents, we don't have a lot of free time. And it's just, it's hard to make time to do anything for ourselves or outside of what we have to do. And so we're just so thankful that you're on today. 

Rhandyl: Yes. Thank you, Lindsay. 

Lindsay: Yeah, it's and it's really so good to be here and like I was just telling you guys I would only say yes to Deonna 

Deonna: So we have talked a couple of times and on not fun Moments, I guess yeah, I mean, some things 

Lindsay: Eva was getting her trach and you were my first reach out, honestly.

Yeah. And I was like, tell me about this. So, 

Deonna: and it's funny because when I was talking to you, I thought, oh man, I remember that feeling. And to me now a trach is no big deal. But back then it was life altering, horrible feeling. And so, yeah, that was, I mean, I was glad I got to become friends with you, but. That was really, that was tough. 

Rhandyl: Okay, Lindsay. So first off, just tell us about you and your family, your career, where you live, all the things.

Lindsay: Yeah, well, I wanted to say when I found Deonna, and I'm not even actually sure how, but I remember going through your timeline and trying to figure out it felt like Allie's accident happened and you were still creating.

Deonna: I did, for a while. 

Lindsay: It's like those deep dives that you know we do when we're up in the middle of the night, and it's I'm just trying, it's almost in a crime series, and the yarn tied out to this, it's like you're trying to piece together other people's stories. I think it just goes to show, It feels increasingly really difficult to share Eva, and really difficult to share her story and our story. And that's why I'd say I'd only say yes to you, because I feel like it's not tidy enough to give people the answers that they want to hear.

And I know that for you and the beautiful, authentic community that the two of you are trying to foster and create, that you don't need it to be, like, okay. Yeah, right. And so that is why I feel like this is a safe enough place for me to be able to Yeah, to be able to share, here's where we're at, here's where I'm at, here's the hard stuff, because you don't need there to be a bow on it, 

Deonna: no, it's always evolving. 

Lindsay: So , I think that is, One beautiful thing about when we do step out and share, it's both of you sharing made it safe for each other to reach out, like Deonna, you sharing Allie made it easy for me to just know I can reach out. , you don't generally start a friendship with being like, are you afraid that they're going to die all the time? 

Deonna: Yeah. That's not necessarily. Yeah. An icebreaker. Light hearted, fun first conversation to have with somebody. 

Rhandyl: Those people become your closest friends and confidants because they understand your life in a way that no one else can.

Lindsay: Yeah. It's so important. So I just have such a high value. For you guys and what you're doing here and just really grateful to be a part of it. 

So, yeah, I live in Wisconsin with my husband Dugan. He actually just left his job this summer, but he is a pastor by trade and a stay at home dad, . Now I have a son, Phoenix, who's eight and then Eva's 12. And I grew up in Rockford, Illinois, and Wisconsin welcomed us after bopping around for a while. Wisconsin welcomed us with open arms. And , my husband took a job at a church here. So we moved here when I was pregnant with my son, Phoenix, who, , is eight. And he was, three or four when Eva's accident happened, she was turning eight and he was turning four. 

 So yeah that's what brought us here, and I have been a full time artist since Eva was two. But, it's just, so, incredibly rewarding of a career and I'm so thankful that I get to do it and I am thankful that it's been something that's been able to carry us through the actual hell on earth, the most difficult days of our lives, so. 

Deonna: Oh yeah. 

Rhandyl: Yeah, you're so talented. 

Deonna: Yeah. We want to talk about your art here in a minute, cause I have, I got questions about that. But so first we we just want to know, you can tell us as little or as much as you want about this, but we just want to know for people who are wondering what was your daughter's accident, when was it, and just the version that you want to tell of that. 

Lindsay: Yeah, oddly, I feel like this is the easiest part to talk about. The hardest is, even up to this month. The life after it. For me, specifically. Part of it is because I didn't have to see it. So, yeah. Eva she was seven and a half. Turning eight in November and it was August and she was running around with the neighborhood kids and I had a lot of guilt because I was working that day getting ready for a shoot So I was like thrifting and bopping around my studio at the time was at our home in our garage So Eva was like bopping around across the street playing around in our neighborhood with friends She'd woken up ready for life that day 

And I am not joking. She just looked like exceptionally Gorgeous that day. I don't even know how to describe it, but like, every time I saw her, I was just surprised by how pretty she looked. When like little kids, little girls grow out their bangs, it's like all the girls have bangs, but it's like her hair is in this like top knot, like off of her face. And she has this beautiful, , Like she was a glowy that day. And every time I looked at her, I cocked my head, but you know, I was moving things in and out of my studio. 

And anyway, Eva got on our neighbor's golf cart and they had it to drive around the neighborhood as so many people do totally normal thing. And I didn't think anything of the fact that was going to happen, but I did, one of the hardest parts for me is I did look at her as she got on it that day, and her little foot, she didn't have any shoes on, was hanging down by the wheel. And I remember thinking don't be dumb, Lindsay. She's safe. Obviously, she's with Bella, a mom, and these other kids. She's got been in a golf cart before she's safe. And that is one of my biggest deals with the Holy Spirit, actually. Like, if that was something I was supposed to listen to, then why, what's the point of having, I believe that I have the Holy Spirit in my heart. That's how I've always felt. So I'm like, , why did you give me that? And then I still just didn't say anything. Ugh. So, I saw her little foot and , I yelled after her like, Be careful! Pick up your foot! And our dog, actually, Lucy, was going crazy that day, barking at her on the golf cart, which is also so strange. Actually made Eva get off and pet Lucy because she was being so ridiculous. Eva's, Like I'm like, Lucy, she's fine. I'm like, Eva, get off, tell Lucy. You're fine. Yeah. Um, So anyway, yeah, so strange. 

So she ended up falling off the golf cart and I got a call on my watch. at swim lessons with our son Phoenix and you get the call that you're always. dreading as a parent. You're also dreading making this call too. You don't want something to happen to somebody else's kid. Oh my gosh. Yeah. That'd be really hard. Yeah. Yeah. So hard. So , no part of any part of the story would have been the easier part to play. No, it's terrible. So I got a call on my watch and I just heard my name and I thought in that instance, I, knew like I just, yeah, Phoenix was in front of me.

And so yeah, then we found out Eva had the words were just tipped off the golf cart and so many questions have come to us since then. Did she have a stroke? Did she have a seizure? Did she faint, Eva doesn't have any, preexisting conditions. I asked did she eat lunch? Yeah, she had chicken nuggets. It's We've thought all the different philosophies. She's had a million strokes in her head at this point, like you can't go back and see if something would have caused it. She had one little scratch on her shoulder. They said Eva so dramatic. So they thought they said they looked behind and saw she was, she had tipped off and they thought she was joking, like laying in the middle of the street. 

So the mom that was driving picked her up, brought her to a neighbor, they called 911, Dugan went to the house, I finished swim lessons with Phoenix, I didn't know I got the call on my watch, it dropped, Dugan answered so the parent called Dugan's phone, and then Dugan just bolted, so I'm just in the pool with Phoenix Okay. Can I just I don't know, going to try and make this as normal as possible. It was his last swim lesson. Oh, wow. Dugan had made it to the house, saw Eva laying there and this sweet woman that was the neighbor, she actually had a daughter that had gone through cancer and had a, has a huge heart for individuals with disabilities, but she said she looked at Eva's eyes and said that she's never going to see again. I mean, I'm like huge pupils. There was definitely something wrong. Yeah. The paramedics got , there so fast. I mean the fastest and our hospital is, I mean, it took me 46 minutes the other day and Traffic and there's a train and they got there to the hospital in 22 minutes. Like Eva couldn't have gotten faster care.

Yeah. Wow. So she had sustained a traumatic brain injury and the rest feels like a movie the rest of that night, like bringing it, we've been to the hospital hundreds of times since then. And I'm like, where is the room they brought us to? And where's and I remember a chaplain sitting with us and I just remember Laying on the floor of the hospital and seeing this second chaplain And I just said like they don't send you for everybody like No, it's a bad sign that the chaplain stopping by , It was awful. I've got like a visitor name tag scratched with words like traumatic brain injury, excessive bleeding. All of that. They said the things that so many people have heard, like the next few to 72 hours are critical. We're gonna try and minimize swelling. But yeah, essentially for people that don't know she knocked her head just right or just wrong on her front temporal lobe above her eyebrow and there was , just a barely a scratch on her, but what happens is your brain swells with all the bleeding. So you go through this experience of trying to keep the swelling down as much as possible. So they remove part of the skull to allow your Brain to breathe and try and keep the swelling down and try and make sure that there's not pressure on your brainstem causing brain damage. 

Deonna: So was she moving or anything at this point after, I mean, she wasn't moving, she wasn't talking anymore. That was over that moment. 

Lindsay: Yeah. Yeah. It's really weird. Cause she took a video right before she got on the. Like everybody. Of course she did. She wanted to be, she wanted to be a famous YouTuber like everybody, like all the kids. And I just remember watching it and just searching for anything, as of to help me view. Like just show me. Something, like maybe I can fix it. 

Deonna: Yeah. Thought the at Allie might have had some sort of thing leading up to it, which she actually did, but it caused a stroke, but hers was a fall similar situation, but I remember them asking me all the questions can we look at video of her from the last few days? They thought maybe she had something going on. So it's so hard, but I. Oh man, I remember the vivid, weird details of those days and it's, I mean, I didn't even eat. I was so screwed up that I didn't even eat the same. We had like food in the crock pot that day. I didn't eat that recipe for two and a half years because that smell, I was afraid the smell of that food cooking would take me back.

And my son was like, I can't smell that ever again. And so we made it once and then he's like, no. But I mean, it really does, it is crazy looking at those videos, like right before I love them. And then I also hate them because it's, that's it. That's all, that was your last videos of them in that original way. You know, It's really hard, , 

Lindsay: the last thing I said to her, , I said. Bye. And she said, I went in and Phoenix was sleeping, but I kissed him on the head. And I just like all that did I, why didn't I just hug her? Like, why didn't I, like, why didn't I put down what I was doing? Why didn't I, but yeah, you can't live there. 

Deonna: No, you can't. I, oh man, like the guilt's pretty bad. There's a lot of things I'm like, I was doing something that day too. We were finding out we were moving here and I was like, we have to pack up everything, let's do this, so I was ignoring her and then I'm like, oh my gosh, like maybe if I had been with her, she wouldn't have got hurt. But you can't really, I mean, I lived in that for a long time and it is really hard to like, Wish, maybe I should have hugged her better or, silly stuff like that. But it's yeah, it's a real deal. It's tough. 

Rhandyl: Okay. So initially, you just explained the traumatic, first initial hospital ambulance, all the things. So can you describe or walk us through Events that occurred after that once they yeah prognosis They gave you guys days after those critical moments 

Lindsay: they did not think she was gonna make it and wow So that's really obvious Looking back at that, they didn't think she was going to make it. And then I remember there was a a point a couple of days in where her neurosurgeon said, I'm afraid she might, and I don't know that you're going to be happy with what you're left with. Oh, shoot. And I really actually value. I think I can look back and say, why didn't anybody tell us this? Why didn't anybody tell us this? But I think he really, from his years of experience he was showing us a kindness by saying that, by really leveling with us and saying, I'm afraid at this point she might make it and I want you. To be sure that's what you want. 

Deonna: Oh man, that's tough. 

Lindsay: Yeah, we just kept thinking , as long as they're seeing any brain activity at all, we have to keep going. And what keep going means, I mean, she was on a ventilator. So at any point we could have said. We're done. This is it. But we are, fortunately or unfortunately, depending on the day, people of faith. And I just felt like if I'm seeing actual activity very minimal activity, but there was a monitor in the room showing little tiny, very irregular brain waves. And I remember having this moment where I just said God, okay. I totally release her to you, like you've got her there. I'm confident. She's there. And if that's what, your plan for her, then by all means, keep her like she's yours. And it's no time with her would ever be enough. But if that's your will for her. And I have like mixed feelings depending on the day about like him giving her back, I mean you guys know there's not enough time. How many years would be enough with your child? And some days I look at her face and think I am so grateful I get you I'm so grateful of the miracle that you lived and I also think like the world doesn't deserve you it is I wish that you could have stayed. Wish you could have stayed in heaven. I wish you could have stayed there. Where you could , run, and breathe, and play, and enjoy, and not get poked, and prodded, and touched, and, have to live this life in the body that you, is not good enough for you, honestly. 

Deonna: Yeah, for sure. 

Lindsay: But yeah, so we just, there was very irregular activity and the prognosis was when they broke it down, they said, if she lives, she will probably not know who you are. She'll probably never speak. She'll probably never move. We had one neurologist that randomly said she might be able to move her right arm. Someday a little bit, which is shocking. Cause that was like, that is the thing that moves the most. I asked him once, like, how did you know that? If he said he doesn't remember, I know I'm like, well, cause you remember.

But yeah, , she will never. Everything. She won't be able to see Eva has something called cortical visual impairment, but it means her eyes are fine. But the connection between your eyes and your brain does not work. So she won't be able to see, move, know who you are. And what you guys know that I didn't know is the spasticity. Like when a child does not get oxygen to their brain, your body has a very high chance of being at war with itself. So. You have what's called extremely high tone and spasticity, and so victims of drowning or Attempted suicide or any sort of brain injury, lack of oxygen, your muscles don't cooperate. And so that's why, you might see somebody with a disability whose jaw is not cooperating with them or whose arms are tight or they're acting irregular. It's because there's all these muscle connections in your body that aren't cooperating properly. And so with the amount of lack of oxygen that Eva's brain had, I think they saw If she lives, her body is going to be facing this huge amount of tone and war with itself, they said you will never have your daughter back if she lives. This is, you will be leaving here with somebody. Yeah. And so we just left 

That's a tough conversation. I mean That's fun. Yeah, and you look Ugh. It is like you're watching your life happen. This is a movie that I am watching, and it's not actually, like, how can this happen? You can't compute. The brain's not even created to be able to compute these kinds of questions and these kinds of thoughts and processing, and I remember being so frustrated with God, like you know what's going to happen next? How would you leave it to us to decide? I don't want to take a chance on guessing what you may or may not be capable of. So we just left it to well, there's still a little tiny movement on this brain activity. And so when there isn't, that will be the decision. So yeah. 

Then it came time to extubate her. It had been a couple weeks, which you guys know like with adults, they wouldn't even mess around with a trach or not at that point. She would have been trached. But they were she's got pneumonia, we need to make a call. And at that point, two weeks later, Eva still hadn't moved. There are signs that we thought she was moving when I watch them now. I'm like, I don't know if that was like a twitch. If that was like, I don't know, she looked terrible. 

Deonna: Yeah. It's so confusing because when Allie got injured, her legs were shaking a little bit and I would get so excited. I'd be like, Oh my gosh, like nurses come look, she's moving. And they were like, yeah, but that's not good. That is actually really bad. And I was like, no, she's getting her movement back. It's all going to be okay. And they were like, Oh yeah, no, like this is not good. No. Yeah. 

Lindsay: The type of movements that Eva was doing, it was like this, arm, like shoulders scrunched to her ears, like arms out. And they said that that's not good with that, what you're watching. And Eva did , she went through this, she started neuro storming. It was the worst thing I've ever experienced in my whole life. Just so hot, so cold. And Eva did start making these like back bends, dystonic. Tight movements and that's honestly how we spent her first year of life with her when she finally woke up after weeks, it was just droning crying.

Oh my gosh. Oh my goodness. Yeah, and But yeah, so two weeks in they were like we need to make a call and extubate her, and we just felt like we weren't ready. I don't know if we should trach her. I don't know if we should not like those confusing movements. , I don't know. And so , what we've decided, feebly and all, well, maybe extubate her and if it turns out that she can't breathe, then. Re intubate her and then we'll make a final call. Yeah. And so they, yeah, they just said, Well, there's a possibility we won't be able to re intubate her because of swelling and whatever. And that's just the choice that we took. Yeah. And then she was able to breathe. In hindsight, I honestly think we spent so much time in and out of the hospital because I do think probably she needed a trach way sooner then. She got one. 

Deonna: Yeah, but you don't know at the time. No. So anyway, that was our first 

Rhandyl: call. I mean, I remember we had, my daughter she was intubated for three months. . When they decided in the hospital? Okay. Yes. 

Deonna: I don't even know they did that until you told me that.

Rhandyl: Yeah. That's a long time. So as an infant that was pretty much the max amount. So they've tried multiple extubations and she failed them all. And so, eventually she, I mean, she got her trach at three months and then that was, It was such a hard decision but essentially that was the only thing that was going to save her life at the time.

And so, we finally , gave them the go ahead and , it was the hardest decision at that time. But now, like Deonna said it's, not a big deal anymore because it's just our life. But for anybody that is contemplating, I mean, we all three know like that feeling of , is this really essential?

 That it's hard, so hard to make those huge life changing decisions because you're like, well, if we do this is she going to be like that forever? Or what if it doesn't work? Or, it's, there's just, a snowball of, And it's so hard to finally get to that point of just, basically, you don't have really any other decision other than to just do it.

Lindsay: Yeah. Thank you for sharing that. Yeah. That's, it's so true. I think I felt frustrated that it was almost presented as a decision to be made like I'm like, the alternative is what, just to watch me like slowly suffocate over years. Like I don't know. So I think one of the hard things. I know we're skipping a bit, but it was just to, it felt like it was either invasive procedures versus palliative, but where Dugan and I landed was we actually think for us specifically, and I'm not, I don't know anybody else's path, but for us specifically doing a trach was the palliative choice because for us, like comfort based care was allowing her to be able to breathe.

Yeah. Nobody was persuading us to do either one, but I felt like she wasn't safe without one. So it was either, do you want to transition to hospice, like hospice for children is very different, than it is for adults. You can live on hospice for as long as your body lets you, , but it was more like a palliative based approach. We actually decided not to trach her the first time I reached out to Deonna and then Eva had a seizure where very uncharacteristically she clamped down, turned purple. Oh shoot. 

Rhandyl: So How long after? The accident was it before she got her trach 

Lindsay: last summer. So this summer Oh, so five years. So four years. Yeah, but I mean we've spent over 400 days in the hospital in this last five years I mean, it's Again, in retrospect, I think that , if her physicians were on this call now, I think that they would say, we wouldn't have presented it like this because you weren't ready. I think that they've got Eva's best interests in mind. Probably even more, they had definitely think about the parents, but if they wouldn't have thought she was safe without one they would have, they doubled down when we, before we left the last time, we're not going to extubate her without a plan, but I do think had I brought it up, , the whole first year and during COVID and all of that, , I think if I probably would have raised my hand to say, do you think she needs a trach?

I don't know how that would have changed the trajectory differently. I think one of the things I have. Trauma around regarding this whole, medical complexities of this, and maybe you guys can attest to this too, is , for me, I didn't realize how terrible a situation is until I'm not in it anymore. And then looking back, I'm like, Whoa, that was really bad. Like Eva was in the hospital a few years ago for pancreatitis and in one day they had, they had, she ended up having what's called a pseudocyst and it's very unlikely, but they didn't catch it. So the stuff hit the fan really fast. And they ended up doing a surgery for that. They poked her bowel accidentally in that. And Eva has a, Eva has a shunt that goes by her brain that drains her fluid into her stomach. So when you poke your bowel, you have to externalize the end of your shunt.

So her surgeon shows up in his street clothes and the room starts like rolling up his sleeves. Everybody's coming in and at bedside, they just cut open her belly. And then. Externalize the end of her shunt. Then she had this pleural effusion. And then in the same 48 hours, she ended up having two chest tubes coming out. Then they're coming in. Yeah. Coming in, putting it. And this is all like in them. I'm like, this is how the Middle Ages should look. It's just at bedside, like cutting a child open with all these drains. And then they come in and do the central line and it's nobody in this moment, like you're on adrenaline and still 

Rhandyl: flight. You're in fight or flight mode and you don't realize at the moment. 

Lindsay: Randomly making small talk about Eva stuffed animals with the resident and like you're doing all this stuff. And then it gets quiet at night and you're like, what just happened? , or there's times where I realized how close to death Eva was, but there's not like a board in the hospital room. That's like on a scale. So I started asking like on a scale of one to dying, like, where are we right at this moment? Yeah, every time I go in, cause, I think in medical school, there's very great providers, but , I don't think there's a class on here's how you talk to family. There's not a class about that. And so I just. I think that some people 

Rhandyl: And honestly, I don't even know if a class would help. No, right. Because if someone has good bedside manner, they have it. If they don't. Bedside manner definitely is not something you can teach. You're either good at it or terrible at it I don't even know if a class would help because some people, it's just personality types and some doctors are horrible at it. And we've talked about this recently, like the approaches. I think that they need to maybe talk about. The approach that you should go to a family that is dealing with something in your situation so, yeah. We've all dealt with really horrible doctors that tell you these things. 

Deonna: It's like they're so smart, they're dumb. Yeah. Oh, yeah. Like social, you're like, okay, you need to help. You need social help. 

Lindsay: But still, what my perfect idea would be, it would be like empathy plus direct communication. For example, if you are afraid that she's septic, what would make me feel more comfortable is for you to say, I'm fearful that she's septic. 

Deonna: Well, I can tell you, I can tell you if someone's doing something bedside, your kid is not in good shape. I have learned that multiple times and I'm like, and I didn't know that back then, but now if they were to all come in, With all their stuff bedside, I would be like, oh crap. , this is happening. We have had multiple emergency bronchs bedside and stuff like that, and it is just not good, but yes. 

Lindsay: Hearing you say that now about the stuff at bedside gives me so much clarity because Yeah, that's such a good point. And that's, yeah oh yeah. Now looking back I can see that's true. Nobody's there. There's not like a PICU mom that's standing there saying like this. This is, we're at a level, we're at a level nine now, 

Deonna: I remember the first time Allie ever coded and I knew it was bad. I mean, she was literally not with us, but I remember hearing him start counting and I was like, what's the number that we're about to get to that is all of a sudden bad? Is it five? Is it 10? Is it 30? What is the number that you don't want to go past? And they would not say they were so busy doing their.

code, whatever. And I remember it got to 10 or 15 and she woke up and I thought, well, I sure hope that was an okay number. Like I, you just don't know any of that. Like it's unless you're from the medical world, but right. I can definitely relate to. What y'all are saying about, I never noticed how bad something is until I'm looking back and then I look back and think, Oh my gosh, that was really bad. Like I, I almost lost her there or whatever. And. I did video diaries, so like, I would go back and look at some old videos I did, and I thought I can't believe I lived through any of that. That is just nuts that we survived it, but we are still doing it.

Rhandyl: I remember one of the first Big bedside like massive, traumatic things that happened and I mean gosh I don't even know if Remi was two months old yet But I remember a nurse pulled me out of the rooms There were so many people of course, I wanted to be in there But I really couldn't do anything and I just remember sitting there asking her like Okay, like how many minutes was that?

Because I knew, she was going without oxygen for a long time. What felt like forever. And luckily the nurse was the good communicator to me no she wasn't gone that long you shouldn't have to worry about, a traumatic brain injury in that moment. Of course, we've had lots more moments in that same scenario, but that was one of the first I remember a really long bedside coding and all the things, and it's just a lot of emotions going on, but you're just, you feel like, You want all the answers right there. What's actually happening and everybody's just so busy and the communication is not there. So, 

Deonna: yeah, they're not worried about you. So how do you guys handle, and you can answer for your husband too, if he doesn't care, but how do you guys handle the stress of it all? And then. How did your family handle the stress of it all? Because we talk about this a lot. Me and my husband and son were dealing with , this horrible thing, and we were getting the front row seat to it, but then our family, it was just rippling out to everybody. And it was interesting to see how everybody handled the stress of it.

Lindsay: Yeah. I guess in a nutshell, if I was being succinct, I would say not great. Yeah, yeah, I, for real, I was on the phone with my best friend today and I was like, I just have to let you know I am not doing good today. It's summer. Yeah, everybody, Phoenix is home from school and I want to give him the life, the childhood that I think that he deserves, and Eva takes a lot of attention, all the attention, and it's been interesting because my son and husband were out of town camping on their first camping trip.

That's fun. Yeah, for five days. And so I was with just Eva all day and it was a really good refresher to be like, okay, this is an absolute full time job. And I know that I know that, but , she , has been on the string of antibiotics, which with that comes like, Lots more changes and lots more bed changes like Yeah all the stomach stuff and it's like we'll get done with one and then they start another one and then another one and just Lots of secretion management and it's just been a lot and I thought you know Dugan isn't working anymore.

And so there's part of me that's like great now we get to he'll also be such a good Stay at home, dad, and our house will be clean. And , it was a good reminder. What am I thinking? Eva is a full time job and it is definitely it's like a newborn this for a typically developing child. Plus the thought that like, you can lose them at any moment if something goes wrong, so plus that stress and then plus knowing like this will never be over. We will never not be doing this until she dies. Yeah, so it's just if you can imagine 

Deonna: to our daily thoughts. 

Lindsay: Yeah, if you can imagine That's how it feels and When people that have a newborn that's typically developing say like you're in survival mode. It's Yeah, I guess it's that, plus just thinking are her lips blue? Is this a UTI? And I try and reroute my thoughts to say, I'm her parent and what a gift to be able to have that, like this to be my focus. I'd either be with her hearing about boy problems or driving her somewhere. This is just the different. This is just what it looks like to be Eva's mom. And but it's really. I won't go on a tangent that about like how much I love her and how much she's always enough because I'm sure we'll get to that too, 

but as far as the stress, it's like that plus now Phoenix is home and I, he doesn't have the sister that, Eva, we call her paraverbal, but to most people, she's nonverbal. Eva on her good days can blink and sigh to respond. And she absolutely will light up at things that she knows and recognizes her favorite song, a Bible verse, like a friend, but that's how her communication is very nuanced and only when she's at the top of her game. And so Phoenix, I feel like he's just very lonely all the time. He craves attention and craves people. He just wants to , have a play date that never ends. And that was heartbreaking every day. Oh, I know. Yeah, so that's just one little component of it that's making everything so stressful on top of it. I have a job and that is really difficult because having a disabled child makes it both extremely challenging to work and extremely important to work because they're very expensive. 

Rhandyl: So I know every state is different and like Deonna and I both have private duty nurses that are able to help us with our caregiving. Now does Wisconsin offer anything like that for you guys or is that an option? 

Lindsay: . So we went to exclusively Medicaid and the word on the street every time. Cause we've been waving a white flag for a year now. . We're like, we are exhausted. This is really so much this is a lot like, yeah. Just her secretion management and how much she has to be suctioned and coughed and therapies ,, how many changes and she's very complex she is the highest level of need while still caring if people are around her. 

When she sleeps, Overnight. She's awake all day. And that is challenging to figure out how to, there's a lot of hours in the day and she doesn't sleep hardly at all overnight either. So there's a lot of wakeful hours. Eva's laying in bed, like ready for somebody to be hanging out with her too. Be with her. Yeah. Yeah. 

So, in Wisconsin, because Medicaid pays out such a little amount to people and there's such a shortage of home nursing that the response that we're getting is that. Home nursing facilities just aren't giving Medicaid patients nurses because the nurses are going to go to the places that are, reimbursed more that the company, I'm not saying it right, but could you know, I know what you're saying. Do you get what I'm saying? Okay. 

Rhandyl: It sounds like caregivers and advocates in Wisconsin need to really Be reaching out to their legislators and I don't know because that is sounds like a racket and it's 

Lindsay: yeah, our Eva's complex care doctors one of them even which felt nice. They said it's oh her palliative care doctor said it's borderline abuse for parents and families to not be able to give them support percent but I mean, I've been Deonna and I have talked about this But we I have slept on the couch since Eva got a trach I mean every night I'm up at least Five or six times just to empty the condensation out and then Dugan stays up late to be able to finish her feed and do the things and , turn off the lights and whatever, and then Phoenix is up at 6. 30 in the morning. So I'm like, I don't know where I am on my literal last nerve. I'm exhausted. Yeah. So, and people are 

Deonna: like, you should rest. And you're like, I will cut you. I can't rest.. And , it makes me laugh so hard when people say that because I'm like, you have no clue. It's seriously exhausting. I have MS and I. Started a horrible relapse because of how tired and stressed I was when we were in Houston a few months ago, and it's just now chilling out. Like it affects you so bad and there's no end in sight. Like you were saying, , I've always told people, having a kid like, Remi or Eva or Allie, it does feel like you have multiple newborns who could die at any moment forever. I mean, it's never ending. It's such a stressful, tiring thing for sure. 

Lindsay: Yeah, I think hearing you guys say that is well, I'm not doing it wrong. That's good to know. And I have ADHD and I can, if it's just me and Eva and nothing else going on, I can hyper focus on anything. So if I just get to be wrapped up in Eva's world, but to do that and then stop and Fun parent and then answer some work emails and there's been a lot and then even correspond with friends. But I'm like I've got this picture of the person that I wanted to be. And then I think that I could be the kind of mom, the kind of friend, the kind of artist, my, like general aesthetic, , I can see her. I can see this person that I feel like I could be. And I feel like I don't ever get a chance to be her, which if that was sacrificed to be able to allow Eva to be the person that she could be, then that would be completely worth it. But I feel like, gosh, . I don't even get to give you the life that you deserve, so it feels like a very surreal alternate universe. 

Rhandyl: Yeah, you're just in a constant state of overwhelm. 

Lindsay: Yeah, I just felt like the other day I was like, oh, I should post on Instagram. I'm like, no, I should just rewrite my profile to just say over simulated.

So back to the stress and insurance. I think that we might. Add another insurance this year and just try, but it's been helpful to hear Deonna, like you're looking for nurses right now. So I know enough to just know just cause you have insurance and could get a nurse. I mean, you can. It's irrelevant. Yeah. Yeah. So it actually is nice cause I don't wish that for you, but I don't look at it thinking like if only I, X, Y, Z, so, and then, oh yeah, 

Deonna: we live in a state that’s super friendly towards this, currently, it might change in the future, but just can you can get doesn’t mean you have it, it’s frustrating.

Lindsay: So I'm like, well, I'm just going to spend the next couple of months with Lindsay Letters trying to make 18, 000 extra dollars to add insurance to get a nurse. 

Deonna: Oh, my paintings. 

Lindsay: So here we are. Yeah. The stress is I said to my best friend today, like I am so done. Like I am, Dugan and I have expended all of our relational equity and he wouldn't mind me saying that, but it has been incredibly difficult to, I mean, , It's like God takes two opposite people and then marries them in my limited experience. And it's been really challenging for us how we process things, how we handle grief, how we experience like our expectations of not of Eva, but of God how we handle stress is so different. Yeah. And I would say that it has definitely not. Made us stronger or brought us together, but we Have said so many times. There's the only way this works is together 

, he is an incredible Dad to Eva. He is an incredible, like doting, loving very involved, intentional father. So that has been helpful, but it's been extremely challenging for our marriage. It's been really hard on Phoenix as we've talked about before. I mean, , that loss and grief for him is really real. I am trying to do all this with, yeah, being able to financially support our family. And It feels hard to find time for anything that feels life giving and just knowing, that this will not get any easier , you know, if somebody said, Lindsay, could you do this for five more years? I'd say no, I couldn't, I could not do it. But if that means I don't get to have Eva longer than that, like how, The end of any of this feels not good. Does that make sense? Yes. 

Deonna: Me and Rhandyl have talked about this. I'm like, there's no easy path forward for any of us because either we're going to lose our kids, which is a very real concern for all of us, and that'll be really hard and we've known lots of parents who've been through this.

Like my parents just went through this with my only sibling and it's, I mean, any age it sucks, but we might lose our children when they're children, Or you're doing what we're doing right now, which is really hard too. I mean, there's really no cupcakes and rainbows path, for our future. And I know that. And it's really hard. That's a tough realization when you're like, okay, either way. This isn't going to be easy, but what I've realized is God never said like your life's going to be easy, but it, I always thought it was going to be like, I don't know.

I just, I grew up with an easy childhood. So in my mind, my kids were going to get that and they have not got that. And it's, it's really tough, but. The sibling component is hard too, like knowing that my son will probably go through what I've gone through just recently with my brother only probably, well, potentially younger. Oh, it just kills me, thinking about those things, especially when they have one sibling. 

Lindsay: Yeah, does Remi have siblings? Yeah. 

Rhandyl: Yeah. So she's the oldest as well. And my son is two. And they're both August babies, so they're all soon to be three and eight. Yeah. And so, yeah he, he's still in the little oblivious, stage not asking questions yet, but it's so funny to watch their relationship and how he just subconsciously does understand. And praises her for just little things, like just for example, tonight him and I were throwing this little stuffed animal back and forth. And I was like, Go see if sissy wants to throw it and because I could tell she was looking over like she was wanting to Be involved and so he went to get over there and she chunked it and he was like, yeah Like he was so excited and but it's just little moments like Yeah, but yeah it's always so challenging to think about like you said It My son is very similar, it sounds like, to a phoenix and he wants to be the center of attention and he's just this ball of energy and he wants to do all these things and he wants my attention constantly and it's just almost, impossible in our caregiving world to be able to give both siblings full attention.

I mean, I think that's with any parent, but in our situation, it's impossible. It's just it's just a constant battle of guilt. And so it's definitely a challenge, but it's been, fun to watch. We never knew if we were going to, if Remi was going to be an only child or not. , and now, it's been a huge blessing. But It's also tough, and I know that it's going to be tougher whenever he starts asking all the why questions, and oh, we have to explain things, and that's going to be pretty hard. 

Deonna: Yeah, those are fun. 

Break for Part 2 

What are some, if any, positive or unexpected moments that you've had from him? This difficult thing that's happened with you guys.

Lindsay: Yeah, positive things. We're very grateful that Eva can smile and that she does know who we are. , that is, I feel really grateful for that. I think that it's one of the reasons that it's hard for me to follow other people's journey because it's hard not to compare your experience with other people.

So on one hand, I think, I actually was just telling some friends about Allie and I was saying, like you and I've talked about, it's difficult that Eva can't, I would give anything to hear her voice. On the other hand, it'd be really hard to hear what she has to say about her circumstance.

Deonna: It can be bad. Yeah.

Lindsay: Yeah, so I think sometimes it's And sometimes not, but you know. That's why having a community is really helpful because sometimes it is so good to hear another perspective about that. But there were some emails or messages we got early on that said, how did you get her to smile my child hasn't smiled yet. Oh. After their brain injury. And those break your heart. 'cause it's I don't, nothing like we, 

Rhandyl: there's no TBI the same, like it's just not, they're so random. 

Lindsay: And so, on one hand, I'm, I can compare Eva's TBI to another online buddy we have and think, Gosh I expected that she would get to go sledding and horseback riding and, all these things.

Huh. And then, on the other hand, we've got people whose children haven't been able to Show that they can identify who their parent is outwardly and so it's just oh, it breaks your heart in all the ways But so I say that tenderly because I'm sure there are people that don't have that gift yet but I will just say for us It's been you know, I live for Eva's Smiles like her recognition of who we are. And it's just like the most beautiful thing I've ever seen her smile. 

Deonna: There's, There's this video, I think it was your mother in law maybe. And yeah I saw this back in the day and your daughter, she said like, do you want to do your verses or, something like that in the way your daughter reacted?

I mean, I lost it immediately. And then I, for some reason was in my feelings, I guess, because I watched it like over and I thought, Oh my gosh, she knows who she is. She knows what she's saying. Okay, this is, cause you just don't know sometimes when they can't. Talk as well what is going on? And so I was like, okay. She knows her like this is exciting. 

Lindsay: Yes, Eva loves doing that. Dugan's mom, said, do you wanna do your verses? And Eva will flutter, blink. And then Eva, if you watch her she'll, I mean, we know she, she blinks at the same times every time. So wow, she's got a cadence of blinks for this verse. So like she does it with Sharon. 

That's that kind of stuff is even hard. I mean, I remember it was a huge mental shift for me because at the hospital and all of our admissions, when. I felt like I finally could stop convincing people that she was, with us. Yeah. Because I felt like for a long time people were just humoring us. I know. Even if you said you watched the video over and over again, and you probably could pick up on the intentionality of it, but if we just show that to a provider once, they're like, okay. They don't see it. Or they'll say like, how does Eva respond or how do you know that she responds? And I'm like, I just just watch her mom. I know. 

Yeah. And I'll just describe like how you nod without thinking like Eva can blink like conversationally, but you have to pay attention. And so I think it was two plus years where it switched from her being a child being brain injured to like her being a child with a disability. If that makes any sense. And I think that has been one of the top most difficult things. I know we're talking about positive things, so of course it would end up being difficult but I think that, and. Of course, I think it's why one of the reasons so beautiful that the two of you are doing this together because you have such similar stories and also very different, too.

But I think for me, it felt a little like Eva became disabled. And so where I could look at other parents who had a child that was with a disability and I can think. You were perfectly made. God made you exactly like this with your disability. And it's only a disability because we live in a world for one type of person.

But if we're all created that way, it wouldn't be considered a disability. It's the same as being a minority. Like it's very dependent on where you live and Everything around you. So I can look at a child born like that and think, well, of course, like you're perfect. You're perfect. You're exactly who you were supposed to be. And I felt like there was more community. And this is just my very limited perspective. I'm wrong, but I felt like there's more community for children that are born with disabilities. And whereas Eva, this happened to her. So I felt like I didn't belong in either community.

I didn't feel like I got to be part of this. Community of being proud to have a child born into this like elite community of survivors and incredibly tough individuals and their caregivers and this perfectly beautiful created like this community. And. And then she also was not typically developing either. This happened, and so even walking through school and IEPs and, or like, resources, I just felt like, um, I have a friend who has a child that was born with a disability, and I felt like , she left the hospital resourced. And I was like, where's my pamphlet? Like, where is, but they we left the hospital with I don't actually think she's really here. Good luck. Oh man. 

Deonna:  I know what you're talking about because when I first got out of the hospital with Allie, I didn't fit in the group of moms that had disabled kids because I felt like an imposter for a long time because it honestly, I didn't feel like Allie became disabled that day.

I felt like Allie died that day. ,, I have lost my child and now I've inherited this new one. I don't know what to do with her. And so I felt very weird, like I was being an imposter trying to sneak into these groups of moms whose kids were born that way.

And then I started to realize, , even though, it was a different way into this group They're pretty accepting. I mean, it's not Oh yeah, your kid, your kid came in a weird way. But yeah, I know you can't join our group. She didn't join on the first day, but it really was, but it was like, it felt like that. It sounds so stupid, , but I didn't feel like I was going through the same thing as them. Cause it felt like I had a death. And so then I was like, Yeah, they gave me this new kid and they were like, good luck. She's probably going to die. I don't even know what to tell you. And it was like, Oh my gosh.

 It's a very weird experience. And a lot of moms who have kids with injuries, they don't want to talk about it because it's too hard and they just, like some parents I know whose children have been hurt or disabled, they won't speak about it. They just are like, no, I can't talk about it. And. I was like that for a little while, but you know, now obviously I'm not, but it's a weird experience. 

Lindsay: Yeah, I mean I think that's one of the reasons I wanted to say yes to your kind invitation because I felt like I wanted to be able to share that. That felt really awkward, honestly, and I, while I don't know what it's like to be expecting be surprised by a diagnosis or a prognosis it's all different types of grief, right? And none, neither, none of it is better grief. Grief's not like on a scale. 

Rhandyl: Right, I was just gonna say it's all grief. 

Lindsay: Yeah, it's all grief. But yeah, it's all bad. It's, there's not a good one to choose. There's no such thing as easier grief. I had to grieve who she was, not my expectation of who I thought she would be, but who she actually was yesterday. You knew. Yeah. And and, Who she could become and I appreciate you jokingly saying like she didn't join that day because I yeah I think that it did take a couple years before I felt like my eyes were pleading with the providers Like can you see can you give her a chance? But Okay, we're entering like I have a child with a disability and not like I have a child that I'm trying to convince people that she is still there.

Yeah. But the smiles, I think, is just, it's God's provision. It's manna. It's literally, as soon as, I would say, as soon as that stops if ever, but that would be the beginning of us wondering if this is still like the right path for her. I know. Yeah. 

Deonna: So conversation too. It's yeah. I mean, it's not fun. And we've actually thought about that recently because another mom who had a kid with a similar injury to our kids her kid had an incident and wasn't speaking or doing anything afterwards. And it was so scary. Cause I'm like, Oh my gosh, this mom is going through my literal nightmare. And now she's being okay again a little bit, but Oh my gosh. Like I was watching this mom go through this and thinking, this is my. Potential future reality, 

Rhandyl:  So what or who do you feel like has helped you the most through this experience? And then secondly, what do you feel that's helped Eva the most through the last few years? 

Lindsay: Yeah, they're probably the same. And this is another thing that has been positive. I would just say that Eva has had just so much support. I mean, she loves hearing how many people are praying for her and she loves that she, she, I mean, the week before accident, she just marched into the room and was like, I want to be famous. And I remember being like, you can't like, you can't like want to be famous. And she's like, no like, that's what I want to be when I grow up. I want to be famous. And, but she was saying it like adorably, but she was like, I just wanna be, I wanna be famous. So Dugan's like, no, you can be like, 

Deonna: not in like a prophetic, creepy way. 

Lindsay: Yeah. Like famous for what? Oh my God. And she's just for anything. And she's like singing, dancing. Eva did not have a great singing voice. Don't tell her. Told you that. She was an incredible dancer though. She was an incredible dancer. She was dancing all the time and hilarious, just like such a good dancer. Her body just knew how to move. And I remember like backseat parenting, like Dugan, just let her want to be famous. She's seven. Like just He was trying to like, be like, well, you can be modest and humble and then, And she's like, no, I want to be, I want to be famous and fortune is still there and she loves getting to Here that people care about her, and like when kids send videos and like she just loves it and right away we were so inundated with so many gifts and things and she was like in a coma and she was in a coma, but we've tried really hard to share it all with her.

So, I think that has also been really fueling for Eva just to hear that she matters. And that's not to say that people that don't have the same sort of support that Eva has. Matter any less. I just think it's really, I just think it's really unique that Eva wanted to be internet famous when she grew up and that there was such a beautiful outpouring of people for her.

So I think that that has just been so beautiful. I think that any time that we hear that somebody has experienced God or revisited their faith in a new way because of Eva Is really beautiful to hear, of course, not, I've said to God so many times, like how many people, like how many people do you need? You know what else would be really cool? If she just like started talking and walking and we put that like on the internet, like 

Deonna: I've had that experience to people are like, I have started going back to church since Allie's accident, or I have cracked my Bible for the first time. And. 15 years after this. And I'm like, cool. And I love that, but Oh man, like you just are like, did my kid have to have this happen to them? And may, and that's when it's hard. Cause you're like, they are gods and not ours, but I didn't want to give her up for that. You know what I mean? And it's so hard when people are like, Oh, she's so inspiring to me.

And I'm like, Oh, she's just a kid. And she was my kid.  It's really hard. I'm with you. I love it when people say it, but , I have mixed feelings about it. Triggering. We would, we have people thinking, Oh, she's going to be okay.

She's going to snap out of this. This is just temporary. And it was so hard because us as the parents were having to be like, actually they're saying it's not going to get better. And so it was really hard. We've talked about this on the podcast, a lot about people saying, well, if you had more faith, she would be getting better and you're like, that's not how God works.

And if you think that you're in for a world of disappointment because God actually can use really horrible stories to make people, come around to him. And it's, it's unfortunate that sometimes our girls, are a part of that stuff, but. 

Lindsay: I love thinking about, in heaven though I'm like, Eva, , I tell her all the time you will never know how many people are praying for you, how many people love you, how many people believe in you, and I love thinking that she'll get to know someday I feel like absolutely heaven's gonna be, like, she's gonna get to know, so, I think that has been , it's bittersweet, but definitely sweet for her.

 But Eva loves hearing it. She loves hearing that she's changed somebody's life. So I think there's definitely something about Eva that she knows something that we don't know. And I would say that, yeah, I think that she does. I honestly, if I wanted to quit faith, I'm like, I just, I don't know guys.

Like she, I think she has seen the face of Jesus and she knows something that we don't know. And so I'm like ask Eva about it. If Eva can hear about God and Jesus and get, she just was not, I mean, she grew up in. Church, obviously, but yeah, student's a pastor, but she was not like a, like oozy Jesus kid. Her bestie Braylon is Jesus, God in Jesus. And Eva is like I really like to sing on stage, but just something is different since her accident and she knows something. So I look to Eva for that. And we have just been really well supported by our good friends.

People that have children with disabilities oftentimes have very few Or if any close friends, because yeah, it's impossible to sustain the level of grace and intentionality and did I say the right thing? Did I show up in the right way? You're difficult to love because it's so nuanced and I thought this was going to be helping and it's just really hard. And I think that we are just very lucky. To have a small group of very intentional people that have stuck by us and my best friends are Eva's best friends.

Deonna: Okay, so before we talk about your business for a minute, because I want to hear a little bit about that, but what is the best thing that has come out of Eva and everything that's happened? 

Lindsay: Yeah, it's hard to quantify what the best thing is. I hope that when I get to heaven, there's lots of people there because Eva inspired them in some way or another. And I think that's a big possibility. I think one strange sort of thing I can think of when I reflect is, I grew up Feeling like I needed to be a certain type of person or a certain way or and I think that actually a lot of children of the 80s and 90s maybe did feel a little like they needed to assimilate, or and I was very worried for what my relationship with Eva might be like.

I mean, she came out of the womb dramatic. And she's been directing me since she was born. And really hilariously, but she challenged me from the very beginning. And I, I remember always Feeling like I wasn't truthfully, like I wasn't who my mom wanted me to be, like, I shouldn't understand me. Like I was messy and disorganized and laid and like creative person. And my mom just couldn't get, figure me out, and I felt like I was a little unfigureoutalble. And I remember feeling like I needed to be a certain way and act a certain way and dress a certain way to get my mom to like me And I think that I'm not alone in how that felt, and I was really nervous about my relationship with Eva and wanting to make sure that I fully loved who she was and is, 

and I think that it's cool that I can look at her straight in the face. Every day, and say, you are absolutely enough. I couldn't love you anymore. I couldn't possibly love you anymore if you you ran around and hugged me and started singing right this minute, or if you never did. You don't have to do a single thing. You bring so much joy. Just in your sheer presence. You are absolutely enough

. It is crazy to me how easy she is to love. And of course she's not disagreeing with me. Like, of course, of course she's not having tantrums, but I think I felt a little, like, how challenging will it be as a parent to what, what happens when she makes choices I don't like, and what happens when she makes I don't know, you name it, but raising a kid is hard. Difficult and yeah, and it's not you know, but it's just cool Like I don't have any resentment for her at all Like I don't I just can authentically say wow, I just like I just love you so much You're just so easy to love you're like so beautiful and so enough and so And I think that is I don't know proof of something that's better than all of us, I think. Yeah. You know, like, She's just the most perfect thing. And I love getting to look at her and say you're absolutely enough. And that's just what I always felt like would be really nice to hear. 

Rhandyl: I feel like you being so intentional, from the day that you had her until the accident, and now you've been so intentional in showing her that she is enough and I'm sure that she didn't feel like you resented her in any way and still to this day it's so amazing how intentional you were and still are.

Lindsay: Thanks. 

Rhandyl: And how much you love her. 

Deonna:  I loved Allie before and I love her even more now it feels like, but it's crazy because sometimes, people are like, Oh, well, I don't know how God could accept me or love me because I'm not perfect or whatever. And I think the world looks at disabled kids differently.

Like in a different way than we do, obviously, but it's so cool to me to think about how much we love our kids. And then God loves us a million times more than that. He loves our kids. He loves us. And so it's so cool to me to think about that a lot because. They are easy to love.

They're so sweet. They've been through horrible things, but they just are easy to love. And it's crazy to think that's how God feels about us because I don't feel like easy to love all the time, but I mean, we are like, he just looks at us that way, the same way we look at our kids. So it's a pretty cool thing, but,

Lindsay: , I mean, Phoenix is in like a very interesting fashion phase. , like , the other day he wore to a library event. Eva's old crop top, long sleeve rash guard, hot pink to the library with sweatpants. And I was like, Oh, I did feel like nervous for the reactions that he might get, but I was like, far be it for me to decide, like what you feel like putting out into the world. I just, I'm going to be your biggest fan. I mean, unless you're doing something that's mean to somebody, but I'm like, I'll be your biggest fan, so 

Deonna: you're like, that's a choice that you're making. Yeah, exactly. Even with Allie, it's funny because like going to church, I used to feel like she had to be like pristine. I mean, she was my girl. She had to look a certain way . And now I'm like, who cares? It's just funny.. But I do still make her get dressed up sometimes. And she's like, Oh, I'm like, sorry, I'm sorry. She's she won't wear dresses right now. I'm like, come on. 

So, okay. So we want to talk about your business real quick. So, you have a very loyal fan base of people that just love your. art and everything. I remember I followed you back when you were making a lot of the lettering signs. Now you're doing all kinds of stuff. You're like, I mean, I think when I followed you, you weren't doing as much of the painting or I didn't know that as much, but now you're just doing all kinds of stuff.

And so, tell us about your business just a little bit. 

Lindsay: Well, you also, I am so inspired by your art. I just love it so much. So

Deonna: I never even do it anymore. 

Lindsay: Well, I'm a co fan and I really spend I would say less than 10 percent of my time creating art. Yeah, so I think sometimes I feel like an imposter artist because I work in short bursts but I'm not like in the in a white studio with linen curtains blowing and like a Child on my hip like painting every day, yeah I wish, I mean maybe, I think that's one of the cool things about having a child with a disability is you realize the seasonality of your life. Yeah. For better or for worse, it, that is I guess the only piece of advice other than I do not see how you do this with a faith, but I really don't see how you do it without one. Oh yeah. But I would say Appreciate and almost welcome the seasonality, if you can of your life, someday this will not be my reality for worse or worse.

And there will be a day that , I might like shower more regularly again, and it's going to come at a cost, but it will not be like this forever. So there could be a day I'm 75 and in the studio every day, yeah. grieving. grieving these days. So yeah, but I have a business called Lindsay Letters and I honest to God think that the Lord did that as like provision for how we would be able to make it through Eva's accident. 

Deonna: Oh, for sure. 

Lindsay: As soon as we were like those early days in the hospital, I was like, Oh, this is why you allowed this to look like this. It's to be able to been able to support us. I don't know how else you'd be able to have spent so much time in all these admissions and and have it maintain a job and be able to provide Eva with the support . To give her the best life that I can while she's here. It's not perfect, but to be able to support her.

I think that, and then God being able to through COVID and every, it was, it's actually terrible, but cool. Like that everybody is lives broke when ours did, I don't know if you feel like that at all. Yeah, it's like a little special that we were in the hospital when so many people were in the hospital Yeah, so many people. Yeah, so many people's lives had a different chapters starting with grief intertwined It felt a little like everybody's starting over now and to be able to have had a business that can Bring a little bit of levity to people's lives in really hard Times like art's not going to change the world by any means, but   one of the beautiful things about being human is that we get to experience beauty.

And I've thought about it a lot. When you look at the famous great artists that you think of, that you learn about in school, through the great depression and through the Renaissance, like through the, through war and trials, like people were creating art this whole time, nobody stopped creating art in the wake of tragedy. It never stopped. And so I think that it felt like just a huge privilege to be able to share my work with people that needed some happiness delivered to their door when their lives were breaking and before that too. So. 

And I know the internet can be a really volatile place, but I've always had I've never experienced that. I mean, people have been so kind and I think it's because. When you're buying art from a person, you can feel that there is a story behind it. And that becomes like part of your story too. And , you can see your story and their story and vice versa. It's just like a thread that connects us all. And so I've, it's really honestly the great, privilege and ministry of my life to be able to. So I create art that's print on demand. So it's shipped to anybody, printed and shipped. Based on what people order. And so to be able to do that while I'm in the hospital, while I'm caring for Eva is just . Incredible. It's an incredible privilege and honor, really. 

Deonna: Well, it's a good freedom to have. Even though it's a ton of work to work for yourself, I mean, having that freedom is huge and I even with me I do little drawings and it was like, It, I didn't draw anything when Allie initially was hurt because I didn't want to associate something I liked so much with something so bad and I finally did like in January or something, it had been months and it was such a big deal to me to draw just something little.

It was nothing, but it was, I mean, it really can be healing to either have it in your house. Like a lot of your stuff is really. Emotional, but also to even , try it yourself. Even if you're not good at it, I think it's a good, it's a good to try and just, get something. 

Rhandyl: Yeah, I was gonna say in here I literally don't have an artistic bone in my body. So I'm a little I'm the third wheel in this conversation. But I. I do follow you and your work is amazing and obviously Deonna's wonderful. But, , my question, I guess, would be So your work, prior to Eva's injury, and then did you feel like the trauma that happened with all of that, did it affect your creativity or like your art process at all?

Lindsay: Yeah. So, So I call my friends that came alongside me after Eva's accident that like the Avengers. It was like, yeah almost I had friends like a friend that was great at art directing and photography. A friend that was great in business, Hannah knew my business, like the back of her hand and the had. Worked with me for a long time behind the scenes and just, I can name them all, but they all appointed themselves and rose to the scene to be able to support in that critical time. So I just created , and a lot of times it was almost easier in the beginning, cause Eva was in and out of comas and surgeries and all that to be like, well, I guess Bring my paint here. , I never neglected her by any means, but when we were in the hospital all the time and she was sedated all the time, it was like, well, I guess, , her accident happened in August and that's when we create for holiday. And I felt yeah, I have to support my family too.

 So if I've got people that will power that stuff and put it into the world for me. Yeah, I guess I can create and I really it sounds silly, but I feel like it's a spiritual gift I mean I paint Mostly abstract art. So you can't like get it wrong. And so, yeah, to your point, like I would just say just if you were like, maybe I should mess around with paint, like you should mess around with paint.

And then if , if you paint something that you don't like, think if I saw it on Lindsay's website and it was styled pretty, would I like it? And if your answer is yes, then you did a good job. Like we just know, it's you don't think that your own stuff is good. Yeah.

So, anyway, I just. It was really a huge blessing to be able to escape into these worlds. Like every collection I make has a kind of different perspective and person that I think about what would their space look like with these things in it? And it's the only way, I mean, when you're in this high stress, high trauma, high, fight or flight all the time, it's unsustainable. And so, it really is healthy. I actually feel like right now I'm not working on a collection and I am doing a lot of like doom scrolling and like randomly obsessing about patio furniture. Cause I don't have anywhere else for my brain to go, but to be able to have Lindsay letters established and to have Avengers that rose to the scene to help me in the first four critical years after Eva's accident where I could just create and they could power, it was the gift of a lifetime. And I'm so grateful that I had those women in my life to be willing to step in and do that. And since then they've all gotten other opportunities and stepped away as it like, just like the Avengers as it made sense 

 So now it's Me and some contracted roles but that was exactly what I needed and yeah It just feels really cool. It's just yeah such a privilege to be able to do that And I think Eva really liked it. Like she really liked that I was an artist and that, and she's an artist too. And she loves when I'll, get messages saying that I bought this and whenever I see it, I pray for Eva. I mean, she just loves hearing that. So it makes me really happy to know that there's little just like spots and people's homes everywhere where we're connected and thinking about each other. And so it feels like to the great honor of my life that I can be a part of people's sacred spaces. 

Deonna: It's cool too, because like, when you go into Rhandyl's house, there's a lot of photos of her family, but to me, I don't know if it's because of the different way my kid got disabled, but I actually don't like photos of Allie pre injury.

So I won't hang up any photos. Like I have one or two of her when she was like a baby or one and a half. But, I think people might think it's weird when they come into my house because I have art all over the house, but I don't hang up photos of ourselves except for these three or four and they're ones post injury, but , To me, it's hard.

Even when I go to family members houses and they have all these photos of Allie when she was fine, it's just Oh shoot, this is like a huge knife in the chest every time, and so I have art that makes me feel a certain kind of way in my house. Because it is hard for me to just stare at photos of myself.

And I used to have photos of us all over the house. Like I loved that, you know, but it just hits different now, so. Yeah, I'm more into the art stuff now just because it's more what makes me okay, yeah, I'm also like a huge art nerd. So, yeah. 

Lindsay: I haven't been able to articulate it like that, but we moved A year ago in the spring and I haven't put up any photos either it is a little yeah, just really tender When I see pictures of her before Again, it's different now because she's I can think okay. She's younger than but it is Yeah, there's something different about it. And even, I don't know, Eva's face, it's like, when I look at her in person, she's the most beautiful thing I've ever seen. And when I see a picture of her, it feels like that didn't capture your beauty like I wish it would. When I see a picture of her I see like a trach or I feel like I bet somebody would feel like this is sad I think that's one of the hard things about sharing her increasingly is because It's makes people sad, 

Deonna: I feel like I can't hang up photos of her pre injury because then people will be like Okay. Are you living in the past? That's not what she's like anymore, even though that was a part of her life, but yeah, I, so I'm always like, Oh, like there's these cool old photos of her and I'm just like, I feel like I can't display these anymore, which is stupid, but I mean, I could, it's just not her anymore.

Lindsay: It is a nice thing about abstract art, though, that I love, and I think people are more into figurative art I'm seeing more of a trend in figurative art post COVID, because I think sometimes there's also give me something tangible is it a house, but I, what I've always loved about abstract art is that you can draw your own conclusion to it, whereas a photo feels so , conclusive like it feels that was that in that place in time, but I can paint something that means something different to everybody. And I love that choose your own adventure of it. Yeah.

As far as if it's changed at all since Eva's accident, I can tell I'm feeling pretty like. Dry for inspiration, but it's just now hitting me, but I can tell I've painted all these things that are like a beach or this from how it might feel in my memory. And I'm feeling a little man, I got to see something other than these four walls pretty soon here. New life experiences. I'm really ready to just get out in the world and see some stuff, but. 

Deonna: You're like, I have to go to Italy. It's for work. I have to go to Italy. Yeah. 

Well, , we're so thankful for you coming on when you talked about just being in different seasons in life, I right before talking about lettering when right before Allie's injury, the week before my dad had helped me build this huge wooden sign that was going to go outside of our house.

And., it was made out of these shelves that were in my room as a child. And we build this whole thing together. It was the week before she got hurt and I had all my pain out there and I had wrote in my calligraphy writing. And it just said in every season, I will praise him. And it's. Funny because I wrote that because I thought Oh, it's outside.

It's the word seasons. That's cute. Like zero meaning whatsoever. You know what I mean? Well, so this is the crazy thing. So the. I was almost done with it and I didn't finish the last cause you have to do three or four coats sometimes of paint to make it look smooth when you're using these paint pens and stuff, but I did it all and the bottom word, I didn't finish like the word him, I didn't finish it.

It's still real streaky and messed up looking. Well, I was working on it the day before she got hurt and I never finished it. And like, when I got home that night after, I got to go home from the hospital, it was like, I walked outside on the back porch and there it was like the sign and the pens and everything, and I felt like I needed to finish it, because it's okay, I didn't finish the sign.

Well, now it hangs in my back porch, not done because it's the truth. Like there. Like you can't predict your life. There's crazy seasons that are going to happen. And Rhandyl started hers when her baby was born. Ours happened later, but it's tough. And, we've all learned how to live with it, but.

The seasons can be different and difficult, but there's a lot of beauty and goodness in them too. So, I mean, I totally relate to your story. Obviously it's very close to my story, but I really hope that. People can learn from this. But we're just so thankful for you coming on. We know you have a lot going on. And so we're just so thankful 

Rhandyl: for you. Yes, Lindsay, for sharing your story. I know it's not easy and We're just happy that Deonna was the one that, that you wanted to come on and share with us. I know, right? Yeah. Yeah. Yeah, because this is not easy to talk about 

Lindsay: thank you so much for having me. I really feel exceptionally grateful. I really, I do respect you guys so much and I'm a huge fan. I love what you're doing. I just appreciate being able to have a place to be honest and say these things. I think somebody, whenever I post Eva, people will ask, how's she doing? And I just had this thought It's it'd be like saying, how's earth?

I don't know I don't know, like a little good, like a little miraculous, a little terrible, and it's just, how do you describe it? , it's indescribable. There's not any words to be able to say, I think what they're asking is like any new developments, but it'd be hard to say, well, she's blinking more consistently. I mean, to the naked eye no, it's actually getting worse over here. Yeah. 

But I think at the same time, better, but I think that she's quicker to notice things and , it just is so multifaceted to say, how are you guys doing? How is she doing? I don't know. Part of it's a dumpster fire, but also there's pink dolphins. Did you know that? That's new to me, and that's how it feels. That's so funny. And that's how it feels. 

Like you've got to look at like, how was that last hour? Did I laugh? Did she, did they cry? Was it awful? Like it resets every 60 minutes almost. You can't look at your life in the scope of days anymore. And the answers to how things are just, Indescribable in words that make any sense to somebody that's not part of this Community and so I just really appreciate that you guys Have a space where people can be honest about that. So felt really nice to do So thanks for having me on

**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.