Sister & Nurse

Hosted by Erica Jolene with special guest Kaylee Sutton, LPN | Transcription HERE



 

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In this week’s episode we hear from our loveable home-health nurse, Kaylee. As Kaylee describes, her experience living an atypical life started at a very young age when her baby brother developed a seizure disorder. She shares with us about her experience navigating this as a proud big sister and how her natural tendency to care for her siblings led her into nursing and then into our home.


Kaylee was one of the first people I interviewed, long before the podcast had even released a single episode. She was delighted to join me but also very nervous. After hearing the other guests on my show, listening to the preview of her own episode, and then after some personal conversations with her family, she expressed her desire to revisit some of these topics in next week’s afterthoughts episode because she felt like she was being too careful, too gentle, and not quite as bold and brave as she wanted to be in sharing her Atypical Truth.


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Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.

 

Episode Transcription


Erica 00:16

Hello and welcome back to Atypical Truth. This is a podcast community for those impacted by disabilities in complex medical conditions. I'm your host, Erica Jolene. In just about every episode, I've opened with that same line and it's dawned on me that someone listening to this show right now might be asking themselves if a podcast about lives impacted by disabilities is applicable or relatable to their own life. So I thought I'd take a moment to address that very good question.

Erica 00:55

The harsh reality is that unless you have some sort of extremely powerful luck, most people have been, or will be impacted by disabilities, and or some sort of complex medical condition at some point in your life. As this past year and a half has taught us, even the healthiest of humans are still vulnerable to illness and disease. Disabilities and complex medical conditions may be experienced by you personally, or someone who you care about. Heck, you may have already experienced a time in your life when you or a loved one has had to navigate a difficult diagnosis. You might be someone who is only just now realizing the prevalence of disabled people within our society. And for that, I applaud you for becoming aware and tuning in to learn more about the people who directly identify with this community.

Erica 01:58

Your life experiences with or without disabilities may look and feel different from the stories you hear on this show, or it might be similar. I only hope that this show helps to better represent the beautifully complex lives of my fellow friends and family in the disabled community. In this week's episode, we hear from our lovable home health nurse Miss Kaylee. I've been holding on to this episode for some time, waiting for just the right time in this first season to share it. Kaylee describes with us her experience living an atypical life, and how it started at a very young age when her baby brother developed a seizure disorder. She shares with us about her experience navigating this as a proud big sister, and how her natural tendency to care for her siblings led her into nursing, and ultimately led her into our home.

Erica 02:58

Here's the thing though. Kaylee was one of the first people I interviewed. Long before the podcast had even released a single episode. She was super pumped to join me, but she was also very nervous. After hearing the other guests on the show, and then listening to the preview of her own episode, she expressed her desire to revisit some of these topics in next week's Afterthoughts episode, because she felt like she was being too careful, too gentle, or maybe not quite as bold and brave as she wanted to be in sharing about her atypical truth. So here you have the first of a two-parter, detailing the perspective of that classic big sister turned nurse.

Erica 03:52

I have to ask, what did you want to be when you grew up?

Kaylee 03:55

I really wanted to be a marine biologist.

Erica 03:58

Really?

Kaylee 03:59

I was... Yes. I was so incredibly fascinated by marine life, even though I've lived in the Midwest and nowhere near the coast. And I was just super interested. Like my favorite animal is a shark.

Erica 04:15

So do you have any pets?

Kaylee 04:17

Yes, I have three kitties. They are my entire life. My little fur babies.

Erica 04:26

Kaylee, what is your favorite thing to nerd out on?

Kaylee 04:29

Hmm, that's a tough one. I nerd out on so much.

Erica 04:34

I want the raw, real, truth. Okay, but you're also a gamer, which, honestly of all the things that I've come to learn about you, that one surprised me the most because...we're talking about the girl who comes in with her perfectly pink Kate Spade purse or perfectly proper hair and clothes. And then you're like, Oh yeah, I play fortnight every night with a bunch of people online and I'm like, "Wait, what?!?"

Kaylee 05:01

Yeah, it surprised me too. I'm very versatile. There's a lot of things that you know, that you wouldn't expect from me. But that's the beauty of diversity.

Erica 05:14

Exactly. And we're living in a time of COVID. And prior to COVID, like, some of us gamers learned that that is a really easy social outlet. You can do this thing, you can meet with your established group of friends, not have to leave the comfort of your own home, and still feel like you're connecting to the outside world. Also having a lot of fun.

Kaylee 05:37

Right? It's so much fun like I did, I had no idea that you played D&D, it was so surprising, but I love it so much. I love that that's one of your nerd-out things.

Erica 05:50

I'm actually newer at D&D, but I've always played what they call RPG or like role-playing games, like video games. It started with computer games, it was all about the storylines. There was a lot of reading involved. There was a game that I played called Neverwinter Nights, and I would play so much of it, that I would actually dream about it. I would be in my sleep, having these adventures, wake up in the morning, and be like, "Hmm, that was exhausting". I don't know that that's healthy, but it was

Kaylee 06:25

I have so many fortnight dreams! So I definitely understand.

Erica 06:28

Okay, okay, good. I'm glad. Some of them are a little scary. I'm not gonna lie. And then I'm like, "Why am I doing this to myself if I'm just gonna, like lose sleep over it?" But it's so fun and I'm such a homebody. Traveling through different types of adventure RPG games, it gives me that sense of adventure that I crave without having to get me out of my comfort zone. Does that make sense?

Kaylee 06:54

Definitely. We're introverted extroverts.

Erica 06:58

We are introverts who know how to play the role of an extrovert really well.

Kaylee 07:02

That's pretty accurate actually.

Erica 07:04

We know how to wear that hat. But we don't want to. Like we just do when we have to.

Kaylee 07:10

Right. And we can still enjoy it. But it doesn't mean that we don't want to get home right away.

Erica 07:14

Oh, I know. What is one thing you are presently grateful for?

Kaylee 07:19

My fiance Miranda.

Erica 07:21

MmmmHmmm.

Kaylee 07:22

I'm very grateful for her. She just came into my life about a year and a half ago. Is a real blessing to have her in my life.

Erica 07:31

You guys have done a lot of growing together.

Kaylee 07:33

We have.

Erica 07:35

What is one of the best pieces of advice you've ever received?

Kaylee 07:40

A piece of advice I have received that's a good one... Ummmm here recently I've really been into Glennon Doyle. We've talked about her and she said, she told me that I am a Gosh Dang Cheetah and I have not been able to get that out of my head.

Erica 07:58

I love how you're like, "She told me..." Like you...

Kaylee 08:02

She did! She straight up told me I'm a Gosh Dang Cheetah!

Erica 08:06

(laughter) Love it! You are a cheetah!

Kaylee 08:09

You're a cheetah too! We're all cheetahs.

Erica 08:11

I feel it more recently than I ever have. But I definitely feel the cheetah in me coming out. Kaylee, before you begin working as a nurse in our home, we had an informal Meet and Greet. This Meet and Greet, for those who may not be familiar with this process in home health nursing, it gives you, as a family and as a nurse, the opportunity to feel each other out. It helps you to get a sense of the environment and the feel of the home, and helps you to be introduced to the patient, the patient's needs, but also the family and their needs. Really it just gives all parties the opportunity to determine if your presence is a good fit in the home.

Erica 09:11

So something that I remember about your Meet and Greet, beyond, the kindness that radiated from you. Also, your very down-to-earth demeanor. I loved that about you. But there was something that you shared about your upbringing that really intrigued me. Do you mind sharing that with us?

Kaylee 09:33

Yes, absolutely. I shared with you that I have a brother with a rare seizure disorder that he developed when he was around two and that I was experienced in this kind of atypical life, per se.

Erica 09:54

When you told me that I remember just this giant sense of relief leaving because that is so rare to find. But then to have someone be interested in coming into your home and working with your kids, I was like, "Oh my goodness! She's lived this life. She knows this life. Also, she's choosing to remain in a life like this!" And it was so impressive. I'll never forget that moment.

Kaylee 10:26

It was a good first you know, meet and greet. It was only my second meet and greet with the company and it was very relieving just from the start walking in. I knew I liked you guys already. And you never know what you're going to be walking into. And from your all's point of view, you never know who's going to be walking in. So it can be a very nerve-wracking situation. So...

Erica 10:55

Absolutely

Kaylee 10:56

This instance it worked out really well.

Erica 11:00

Yeah, yeah, it definitely. I felt that. Do you mind telling me a little bit about your brother? Sure. I know his name is Ethan and I know he just had a birthday. It's very close to my birthday a few days ago. How old is he?

Kaylee 11:17

He is 17 now, which is so hard to believe. Him and his twin sister, Natalie, they were surprises. So but they were such a huge blessing and I watched them grow up and it's so bittersweet to see them grow up and they're in high school and it's crazy.

Erica 11:40

What is Ethan's favorite movie?

Kaylee 11:43

His favorite movie? Well, he watches a lot of you know, children's TV shows. A lot of movies. His favorite right now is Fire Man Sam. He's going through a fire truck phase. Where he loves all things fire trucks.

Erica 12:01

What is Ethan's favorite activity?

Kaylee 12:04

His favorite activity hands down is riding his bicycle. He is a hardcore biker.

Erica 12:11

Does it make you nervous?

Kaylee 12:13

So nervous. You don't even know how many bruises and scrapes he has had, how many accidents, and he literally just he, it doesn't phase him. He will just when he gets knocked down, he gets right back on that bike. And he loves it so much. It's so cute.

Erica 12:32

Awwwe! There's something you've told me in the past, and I think it's awesome. His love for Toy Story.

Kaylee 12:40

Well, he definitely shares your’s and the kids’ love for Disney in general. Just all things Disney. And when the toys....

Erica 12:49

(laughter) I love how you grouped me into that.

Erica 12:49

(laughter from both) Of course! I love Disney too! But yeah, his love for Toy Story didn't start until...I don't know which number it is because I honestly have not even seen it. But it's the one with Sporky, or Forky. He's obsessed with Forky. Loves it!

Kaylee 12:57

You know what I love about that?

Kaylee 13:16

What?

Erica 13:16

Forky is, at first the outcast. fork, he doesn't look like any of the other toys.


Kaylee 13:23

That's true. He wasn't even a toy at first, he was made into a toy.

Erica 13:28

I could see why he identifies with that or likes that. I loved Ariel from The Little Mermaid because she went through this period with no voice and I just fully identified with that, right?

Kaylee 13:42

Yeah, I didn't even think about that.

Erica 13:45

Does Ethan have any pets?

Kaylee 13:48

He does. He has a black cat named Bert. They've become best friends even though I've heard that Bert is very clingy and just loves Ethan so much.

Erica 14:00

Awwwee. Does Ethan have a favorite person?

Kaylee 14:06

My dad.

Erica 14:07

Yeah...

Kaylee 14:08

He's a daddy's boy. Hands down. Yep, looks just like him, acts just like him, wants to be just like him. It's adorable.

Erica 14:18

Does Ethan ever get sassy or annoyed? And if so, what is the typical cause?

Kaylee 14:25

All the time. He is a sassy little boy. He really what triggers him is when he gets told no, just like any young child. When he gets told no, he has meltdowns. His cognitive-developmental age is around five, around, you know a toddler kindergarten age. And so when he gets mad, he throws tantrums.

Erica 15:00

What makes Ethan smile?

Kaylee 15:02

Ethan is such a happy kid. Honestly, it does not take much at all to make him smile. The smallest little thing, you bring him home a Dollar Store toy and he is over the moon.

Erica 15:16

So if someone's never met Ethan before, how would you describe to them to know when he's happy? Would it be that he smiles? Or does he get talkative?

Kaylee 15:26

Yeah, he smiles and you know it, he's, he talks about it nonstop, whatever's making him happy. He just goes on and on and jumps up and down, you know, just that elated, you know, hand flapping and just happiness.

Erica 15:43

Can you explain to me a little bit about Ethan's diagnosis, and maybe some of the medical complexities that are involved in that?

Kaylee 15:51

Yeah, he got diagnosed with Lennox-Gastaut syndrome, which is a rare seizure disorder. It set him back developmentally. He is also diagnosed with autism, which is also a developmental disorder as well. He had brain surgery when he was four years old and that stopped a lot of the seizures, but it didn't stop them completely. It's taken a real toll on his body, for sure.

Erica 16:24

You were pretty young when Ethan was born. But also old enough to be able to catch on to some of the things that were happening. For example, the absence of your parents, perhaps the concerned tone in their voices, the things they weren't saying, or the things that they were saying - but in hushed voices. I'm sure there was a shift in their attention or a change in their behavior. And I'm curious to know because there are a lot of parents out there who are listening and I feel like your perspective, it'd be really insightful and helpful for those families to hear. So I'm curious to know, what things do you remember about their birth? Or the events surrounding that experience?

Kaylee 17:17

Um, yeah, I know that you know, the purpose of your podcast is not to sugarcoat things. It was, it was hard, you know, being so young and not knowing what's going on. And what I know now, is it was equally as terrifying for my parents, because they didn't know at first, you know, what was going on, either. All they knew was they had this sick baby and didn't know why until multiple doctor's visits, hospital stays, tests, you know until they figured out what was going on. And I, I didn't know exactly how to handle that. At the time, I would have been around eight when all that started going on. And I don't remember much honestly. I do remember being with my grandparents, pretty much all the time. My grandparents pretty much raised us during that time.

Erica 18:14

Did you ever sense any of the emotions that your parents were experiencing?

Erica 18:18

Yeah, my dad, I didn't sense anything from him. He's a very reserved, laid-back guy. And when something's bothering him, you don't know because he doesn't express that, like my mom does. My mom was a very emotional person. So I definitely felt her fear, her frustration, her anger, and yeah, sometimes, you know, when you're in that situation, you take it out on other people. I definitely experienced some of that.

Kaylee 18:44

Was that scary for you?

Erica 18:45

It was a really, it was was a difficult, a difficult few years of unknown and just getting him stable, you know? Because you spend all that time wondering if you're going to lose him.

Erica 19:03

Yeah, that's really scary for a big sister. He was healthy and developing. There was no indication of this been something that would suddenly start occurring.

Kaylee 19:16

No, he was a normal baby.

Erica 19:19

What things helped comfort you during that time?

Kaylee 19:24

My grandparents. Me and my grandma had a really good relationship growing up and they were very, very comforting. Family, friends, we had a really good church family who was always there to help and support and we had, you know, a good team of people. It takes a village.

Erica 19:45

It does. I'm curious to know how your parents and even your grandmother helped to communicate what was going on. Did you feel like the way they communicated the events to be sufficient? Or did you feel like you were left to fill in a lot of gaps?

Kaylee 20:07

Well, of course, they didn't want to tell us a lot of the scary stuff as to not scare us, because we were so young. So I guess they told us what, you know, Ethan is sick, he's got to have some tests. He's, you know, the basic information, but not to the extent of how bad it was. So we only knew what, obviously, what they told us. And, and that was it.

Erica 20:34

At some point, you had to realize this was a big deal, that this was serious. At what point did you start to realize how severe it is?

Kaylee 20:47

At the point that it was, the decision was made that he was going to have to have brain surgery. I knew that that was a serious thing that was a big deal. For going into his brain they're cutting part of his brain, I knew that that was a big deal. And it was very scary. I have vivid memories of being in the hospital in the family waiting area, waiting while he was back from surgery, and my mom pacing and just waiting for someone to come to tell us that he was okay. And it was just a very nerve-wracking time.

Erica 21:28

Those hospital and surgery waiting rooms are impressionable. I remember each of them prior to every surgery, the color and the smell. And I still remember where I was sitting. When we talk about trauma, we don't associate those instances very often as trauma because we weren't hurt. We weren't in direct danger.

Kaylee 21:59

Right.

Erica 21:59

But emotionally, we were frozen. And I'm just curious to know, do you still have any sort of flashbacks of that? Is that a fear that you still live with? Or do you feel like you're past that?

Kaylee 22:16

Oh, I definitely have vivid flashbacks of that. I'm surprised that I was even able to be there. But I do remember being there. I remember people bringing me and my sisters’ little care packages. We got this basket of, you know, just little color books and stuff to do while we were sitting there and, and candy and stuff. And I remember just, you know, doing all that waiting, watching the clock tick, and you know, just a lot of waiting.

Erica 22:54

Yeah. You are the oldest child? I am. And in many ways you are the classic big sister, which I think is why we understand one another so well, we have that in common. I'm curious to know, what role did you play amongst your siblings and with Ethan specifically.

Kaylee 23:19

I was the second little mama, pretty much. I helped my mom bathe them, feed them. And not because I was being told to, because I wanted to. I was very bossy, very independent. And I just loved from an early age, I loved to take care of people and they were my little people to take care of.

Erica 23:47

Did it any of that change when he came home after the brain surgery? Did your comfort level in the care that you provided for him, did that shift at all?

Kaylee 23:58

I was scared to touch him at first, you know, he's just seemed so fragile when he comes home with you know, his, his bandages around his head and, and everything. And cause he was so little. It was scary. But I helped him by helping my mom, pretty much. I made sure that the kitchen was cleaned and I helped her you know, around the house and just to minimize her stress. And because there wasn't much I could do for him.

Erica 24:37

You were so young to be recognizing that need and then filling it.

Kaylee 24:43

Right.

Erica 24:44

That's phenomenal. Wow.

Kaylee 24:47

Yeah, I was doing that from a young age honestly.

Erica 24:51

So is your love language acts of services?

Kaylee 24:55

Pretty much, yes. Yeah, I think that you know that firsthand. Like every time something's going on with the kids, I'm just like, can I clean something for you? Can I, can I do something?

Erica 25:08

And that is my love language too, and that is felt. So when something like that happens and I've noticed, Kaylee did the dishes, oh my gosh, what? Or look at the bed, she made their beds, like to me. I feel the love when that happens. I want you to know that. I don't know if I've been able to articulate that at times. I think I have but not every single time and, and sometimes I don't even see it until you've left. I can't tell you how many times Randy has heard me say, "No, she did not!" And he comes into the room. "What? What did she do?" And I'm like, "She folded their clothes!" And he's looking at me like, "Are you upset by this?" "No, she didn't have to do that. That's so sweet."

Kaylee 25:57

Oh my goodness.

Erica 25:57

..because that is totally my love language.

Kaylee 26:00

We have so much in common. It's crazy.

Erica 26:03

It works out very well.

Kaylee 26:04

It does.

Erica 26:06

Ethan has a twin sister. Natalie correct?

Kaylee 26:10

Yes

Erica 26:11

And Natalie did not have any sort of childhood diagnosis that is comparable to Ethan's. I'm sure that Ethan's bond is unique and different with each of his siblings. And his attitude with his siblings, I'm sure changes. I'm curious to hear more about his relationship with his twin Natalie, and I know you're not Natalie, so you can't speak on behalf of her experience. But as their big sister, can you describe to me how you see their relationship?

Kaylee 26:50

Yeah, watching them grow up as twins. Was, was very cute. Because Ethan being developmentally delayed Natalie, she pretty much took him under her wing at school. And she was his, you know, built-in playmate. They have been really good friends. Since the start. She's, she's her brother's keeper, for sure.

Erica 27:23

Awe, that's amazing. Our lives as parents, they shift drastically when we bring home a child with medical complexities, with health concerns, or disabilities. We quickly have to learn how to integrate the lives we lived before with the new norm, we have to navigate now. And I have a hard time imagining how challenging that must be on the siblings in the family. That sudden shift in your life must have been momentous for you, as it was for your parents. How did you, how did you explain that to your peers? Your teachers? Your, you know, your friends? How did you navigate that as a young child?

Kaylee 28:23

I'm sure it was very drastic at the time. Since I was so young, I really don't remember a time before our life as an atypical family. The whole town knew. We lived in a very small town. I'll start off by saying that. We lived in a small town and everyone knew everyone. And like I said before we had a church family. And so when all this was going on, he was always on a prayer chain. And so everyone knew even knew our family and what was going on. They didn't treat us any differently. We did, if we wanted to hang out with friends, we had to go to their house because my mom didn't like having company which even if she didn't have Ethan, she wouldn't want company. That's just the kind of mom she is, she says "There are enough people on this house it is. I don't want any other kids running around in it." So

Erica 29:26

Yeah, because you guys had - that's a house of six right?

Kaylee 29:29

Sx of us. Yeah. So that was enough. And Ethan is enough for six kids himself because he's so hyper. He's always been a hyper kid.

Erica 29:40

I like how you have referred to that a number of times as an Atypical family setting. And I feel that way very much. I don't think it's a bad thing. I just think it's different from what a lot of my peers have in their family setting. So I'm curious to know did that ever prevent you from doing certain activities participating in certain school events or even just wanting to have friends over?

Kaylee 30:11

You're right. There are a lot of people who don't know what this life looks like. They have a typical life, they have typical challenges. And a lot of my friends were like that, they didn't have any family members with any special needs. And sometimes they didn't know how to act or respond to certain things. You know, if they the rare instances that somebody would come over, and they witnessed Ethan's meltdowns firsthand, that was probably really, you know, new to them. Unless they had younger siblings or someone who has the same things going on. But it didn't stop me from doing things outside of my home. Definitely not. We were able to go to friends and do sports and activities and everything. My grandparents were heavily involved in those types of things. My grandma took me to cheerleading.

Erica 31:13

Did you ever feel like you had to educate your peers? About Ethan, to prepare them? And if so, how did you do that?

Kaylee 31:23

I did kind of feel like it was my responsibility to at least warn them about his behaviors. Because when he was younger, you know, like, I would say, maybe a couple of years after his brain surgery, he started having some behavior issues, and he would have frequent meltdowns. And so if we didn't have anybody come over, we kind of had to warn them, that it may happen. But it wasn't something I was too worried about. Because if it's like if you couldn't accept it, then don't come over.

Erica 31:55

Mm-hmm. So Exactly.

Kaylee 31:57

Yeah.

Erica 31:59

A lot of kids with seizure disorders are put on medications that do have side effects, which cause behavioral issues.

Kaylee 32:09

And he has been through that. He has been on medications that did cause a lot of behavioral issues, as well as you know, physical side effects that it's, it's really just, just a ummm...

Erica 32:22

It's hard, because, you know, they're so helpless to begin with. I mean, when it comes to having no control of what their body is doing, the way their brain is firing.

Kaylee 32:32

Right.

Erica 32:32

And then when you are trying to manage that, and you have to choose, you don't have to, but you try a new medication with hopes that it will reduce the seizures and give them an opportunity to develop. But then you see this, you know, negative side effect of behavior issues. It's heartbreaking.

Kaylee 32:54

Mm-hmm.

Erica 32:54

It's an impossible choice as a parent. And, you know, we went through that with Caratacus, he cried for nine months straight while on Keppra. And I guess I'll never fully know if that's what did it. But I've always known that Keppra is the seizure drug that's going to cause behavioral issues. I'll never be able to fully say with confidence that it was the Keppra, but I will always speculate.

Kaylee 33:26

Yeah.

Erica 33:26

And that was so hard because, at the time, it was also his very best seizure rescue medication. So you're choosing: reduce the seizures, but also, this means his crying is going to be worse for several days. Or, I mean, either there's no "or," you reduce seizures.

Kaylee 33:47

Exactly.

Erica 33:48

There is no "or"

Kaylee 33:49

Like, which is the better evil, you know?

Erica 33:53

Yeah, it's terrible. When he would have these meltdowns, what did you do as a family? How did you comfort him? Was there any comforting him? Or was it just a matter of giving him time and space to calm because, at that point, it's just a neurological issue?

Kaylee 34:10

Mm-hmm. We definitely had to do that. Give him space, let him cry it out. Just make sure he didn't hurt himself or anyone else. That was a big thing. Because he would get aggressive. At one point, he had to be institutionalized for a couple of weeks, because he got so out of hand. And then of course, once they got his medication under control, which happens to I'm sure so many people that just have such bad side effects to medications like that. Once he was, you know, it has taken years for him to really level out. And, and now, he at 17 years old, he is not anything like he was at that age when he was going through, you know that. I think they finally have gotten to a point where they know what dosage he needs, which of course, you know, gets adjusted as he gets older and bigger.

Erica 35:13

But also, you know, our kids, their seizure disorder is the worst throughout the first year of infancy and, and then their toddler years, and then we know to expect there's puberty, it's going to get bad again. There are these growth spurts. There's, any sort of changes with your body, as you've witnessed when they teeth, we see neurological changes. You know, it makes sense that he's 17 and you're seeing this kind of calm down because the brain is really, it's nearing the end of its development. It's done some of the most predominant changes in development and creating new neural pathways. And so it makes sense that you would see that calm down. It makes sense that those things would be hard to manage while your brain is changing and growing so rapidly. I'm not a neurologist, these are all assumptions, but I feel like we may not have the behavioral issues but we certainly see similar themes at a neurologic level, and you've witnessed it where there's really nothing you can do except like sleep,. Let them have their reset button, which is sleep. Did sleep help, Ethan?

Kaylee 36:36

Definitely. Yeah. And that's just with any kids. Sometimes they just need a nap. Sometimes they're just cranky, and they just need a nap.

Erica 36:48

I want to talk about your atypical truth. Okay. Let's say that there are parents with older siblings to kids who do have autism or seizure disorders. If there was one thing you'd want people to know most about your role as the big sister to Ethan, what would it be?

Kaylee 37:07

Well, I think sibling relationships are very important. Just having siblings in general. You know you grew up with a sister, you know that. They're just built-in friends. You fight with them, you play with them, you love them, but you dislike them at the same time. And it's, it's a, it's a roller coaster ride with siblings, but at the end of the day, they're there for each other. And I will always be there for Ethan just like, I know, he would do the same for me. And I guess what I would want parents to know is to not let all the stress the tension and everything takes over your life, so much so that you are affecting the other children's lives negatively.

Erica 38:02

It's a hard thing to.

Kaylee 38:04

It is a very hard thing.

Erica 38:06

Something we don't talk about very often is maybe some jealousy, maybe some, some resentment for the sibling who now has extra needs because it has taken away from this kind of normal experience you had before. And those are hard things to talk about. Because there's so much shame layered into that too, right? But when you're a kid, it's just like a primitive feeling. You see, mom and dad are really busy now. It's because of this, my brother, it's because of my sister. And then you feel resentful, or jealous. And even you might act out.

Erica 38:51

I was the disabled one in my family. But when my sister was born at seven years old, I saw a huge shift in like my parents. The attention was no longer on me. I was no longer an only child. It was a Royal boot! But also, I mean, let's be honest, I was the first child, I had a lot of extra needs. And then suddenly this baby came along and she was perfect. And she was healthy and super adorable. But there was some jealousy there because things came easier for her than they did for me. And I am ashamed that I felt that way. But it was just a natural feeling. And I wonder it'll wonder I'm certain that there are kids and parents out there who are struggling with navigating that. Do you did you ever experience any of that?

Kaylee 39:49

I don't know if I would call it jealousy. I don't know if I would call it resentment. It was more sadness. Yeah, that my parents weren't the ones in the stands at my games. It was my grandma, which I love my grandma dearly. But there were times that I wish that my parents could be at places that they couldn't be because they were taking care of Ethan. Which they tried their best to, you know, do things with us separately. And we did, we did a lot of... they, they, they did try and take the time to let Ethan stay with my grandparents, and they would take us girls and, and go and do stuff with us take trips with us. And they, I think they did the best that they could grow up trying to keep us, keep themselves involved in our lives.

Erica 40:41

They think kids can sense that. I really do think kids can sense when we're doing our very best.

Erica 40:46

Mm-hmm. They did.

Erica 40:50

If there was one thing that you could share with other complex needs families to help them in their journey, what would it be?

Kaylee 41:00

It would definitely be to not let your atypical life keep you from doing things. Even though I know that this life can be stressful, can be sad, can be really hard. Don't let it keep you from making memories with both your typical and atypical children. Because that I feel like that is really something that can be regretted, later on. Because I'm sure, I know my mom has voiced it to me that she does regret not doing more, even though I feel like she did a lot, she feels like that she did not do enough with us as kids. And she holds a lot of regret about that. I mean, I can't speak for her just for what she's told me. But I know that that there is some sadness there.

Erica 41:57

Mm-hmm. Yeah, that's, I need that reminder. It's a hard thing to digest, too.

Kaylee 42:06

Yeah, it is.

Erica 42:07

Everyone's situation is so different. And you know, it's sometimes I get so wrapped up in how difficult it is to maybe do a certain activity that I get defeated before we even start creating those memories. That's all. That's all they have. That's all we have. And it's, it's an important part of our formation as human beings. I think about how much of my identity is wrapped up in these amazing memories I have from my childhood. So yeah, why not give that to our kids too?

Kaylee 42:43

Exactly.

Erica 42:45

Can you name one thing that you would like to do or provide for Ethan, if you had no limitations, like money, destination, or accommodations?

Kaylee 42:57

Hmm. Well, this is going to be a really hard answer for some people to hear. But as I get older, and as my parents get older, I think about the future and one day having to care for Ethan without my parents around. So I think one thing I would do would build an accommodating house for me, and him, and my family. As well as even if my sisters. I just would love to be able to have a place for all of my, my family, including Ethan. And also I would love to... If I could I would just make the entire United States, World, just more accommodating. Just build more facilities that accommodate for these children, these adults with, you know, complex needs.

Erica 43:54

Yeah. So you want to family compound like ours, but I bet it looks a lot better.

Kaylee 44:01

Whatever! Yours looks amazing! No, but you know me, I am like bougie, I'm gonna have to have this big mansion. You said I didn't have the money limit in this question.

Erica 44:14

You don't. You don't. That's the whole point, you know. You said that you thought this would be an answer. That would be hard for people to hear. But I'm going to tell you right now from my own perspective, it would bring me nothing but peace and joy to hear something like that come from the mouth of a sibling. If my kids had a healthy older sibling like that would just bring me so much peace and relief. That is a huge fear, we as parents have is the idea of who will look out for our children when we're gone. And there is some comfort when there is a healthy sibling involved. But to hear from the sibling that that is actually a part of your plan; that is, that is what you want to do. Oh my goodness.

Erica 45:09

My final question for you. What have you learned from Ethan?

Kaylee 45:15

A big thing is patience, honestly. I had to learn a lot of patience. Ethan, you know, we've talked about earlier, he's not always easy to get along with. He has meltdowns and he doesn't like being told no. When just growing up as kids, I babysat him and my sisters a lot. Um, my mom wasn't always the best in health. So I babysat a lot. And just arguing with him was equally funny as it was frustrating. So I did I learned a lot of patience and love.

Erica 46:00

Yeah, definitely, I think patients stems from love.

Kaylee 46:05

Yeah.

Erica 46:06

I think you have to love someone, to be able to be patient with them.

Kaylee 46:11

Mm-hmm.

Erica 46:12

In that capacity too. You know something I've noticed, and I don't know how often you recognize it in yourself, but you have a really amazing sense of humor about the realities of life. And I think that's wrapped up in your patience. And also wrapped up in your experience with Ethan. You're able to laugh at things, you're able to laugh at yourself. It may be a coping mechanism, but it's one that we share, and it's one that is comforting. When times are hard, we're still able to see the humor, and

Kaylee 46:48

(laughing) It's yeah, it's something even though it's so frustrating and just makes you want to pull your hair out in the moment. It's something that you go back and you just laugh. You just laugh because it's Ethan. It's little, lovable, crazy, fun, argumentative, Ethan. Yeah. And I mean...

Erica 47:09

You wouldn't have him any other way. I mean...

Kaylee 47:11

Exactly. Literally.

Erica 47:12

He wouldn't be happy if he didn't have that obstinance, you know...

Kaylee 47:17

Yeah...

Erica 47:18

...hard-headed. I mean, a lot of these traits...

Kaylee 47:20

...hard-headed

Erica 47:21

...are also a part of you, which is what is what I find really hilarious.

Kaylee 47:25

It's true! Runs in the family, honestly.

Erica 47:28

Oh, I love it. I have more questions for you. What comes to mind when I ask you to recall a memory or a moment that brings you great joy?

Erica 47:46

One thing that has brought me great joy, you know, within the last year or so would be my acceptance letter into the RN program.

Erica 47:55

That's exciting!

Kaylee 47:56

Yeah, that brought me so much joy. Like I didn't think that I wasn't going to get in. But at the same time, it's like when you read that letter that says, "Congratulations, you've been accepted into it." That's just such a good feeling.

Erica 48:10

Mm-hmm. You know, that segways into my next question for you perfectly. You are the home health nurse for both of our kids. You're one of two. And I keep telling you how proud I am of you because I personally could not imagine doing school full-time, working full-time for our crazy family. I'm just curious, where does that drive and motivation stem from? What inspired you to be a nurse?

Kaylee 48:46

I come from a medical background family, to begin with my grandma was an LPN. And, and I guess my personality just really fits with the nurse, you know, like, I've always loved taking care of people that like I said earlier, I love taking care of my family and I think that an Ethan has really motivated my decision to get into nursing. And my school, my high school pretty much threw me into pre-nursing. So I graduated high school with my nurse aide and then kind of just that really motivated the decision also because I was already that far might as well pursue higher titles.

Erica 49:38

Yeah. So I'm curious to know what compelled you to work in home health?

Kaylee 49:47

I don't know, honestly. I have done things that vary from the clinical setting, to nursing home, to assisted living, to mental health. I've like dipped my feet into all these but home health. So I had spent my first year of being an LPN kind of trying to find my groove, what I fit into. And then when I was moving, I was looking for job opportunities and found this home health opportunity, and I just decided to go for it. And it's the best decision I've made since I moved here.

Erica 50:33

What aspects of your job as a home health nurse or just nursing in general, do you enjoy and look forward to the most?

Kaylee 50:43

Taking care of the babies!

Erica 50:44

Yeah...

Kaylee 50:45

That's the best part is just getting to see them grow. That's the best part of working in childcare in general, is just watching your, your little children, patients just grow and thrive, and do things that you get to see them on a day-to-day basis. It's not like an acute setting where you're seeing someone in and out in 15 minutes. You get to see these kids every day and, and be a part of their growth and development. I think that's such an amazing thing. And you know,

Erica 51:15

For kids like ours to have that consistency, that face that they know, that routine that they're familiar with, the voice that they look forward to hearing. It is so awesome as parents to watch my kids engage, and be mindful of those things. Our children can't communicate that in typical ways. The fact that that is a part of this that you enjoy is so comforting and exciting because that's the part we enjoy about it - that our kids have this regularity to their lives, this person that they can count on to celebrate those milestones with them because they knew how hard it was for them to get there. You know.

Kaylee 52:01

Right? And like my, some friends I've had, you know, they're always like, "Oh, I don't want to go to work," they say, "I dread, you know, I dread my job." And just not being able to feel that feeling is great. It's something that everyone strives to have a job that they genuinely love, and enjoy, and don't dread going into?

Erica 52:24

Well, that's awesome to know.

Kaylee 52:28

Well, you definitely should know that.

Erica 52:31

Well, thank you. You know, it just it means a lot to us to have good quality care. This job isn't for everyone.

Kaylee 52:41

No, it's definitely not.

Erica 52:42

It's hard. It's not an easy job by any means. I think there's a lot of assumptions about home health, maybe being more relaxed. But you're in someone else's home. You're under their eyes, for the most part, you're trying to make them comfortable and also make yourself comfortable in their private setting.

Kaylee 53:08

And right now we're playing the role of nurse and therapist. So thanks to COVID.

Erica 53:14

Yeah, thanks to COVID we're exploring professions that you haven't actually been fully trained in, but we're all expected to learn. And you know what, we're doing a good job. You guys are doing a really good job. What aspects of your job, what aspects of it are difficult or challenging?

Kaylee 53:36

I would say the bureaucratic part. All the paperwork and dealing with billing and all of that stuff. It's really sad that that is the part that is most frustrating, about, about the job, then the actual job.

Erica 53:55

It's crazy to think that every single detail counts, or counts against, the quality of life that this patient might get. And that's so, I'm sure it's really stressful to have that responsibility lay on you guys.

Kaylee 54:09

Yeah, definitely. And I know I speak for nurses everywhere that facilities are understaffed and overworked. And I do not speak for myself in this just, you know, other nurses and other facilities. You know, it's nursing is a, a fulfilling job, but it can also be, you know, difficult depending on where you work.

Erica 54:36

Yeah, definitely. I think a lot of nurses are feeling that in the time of COVID to definitely. I love this. I think this conversation went really well. And I'm, I'm just so happy to learn more about your experience with Ethan. We've touched on it previously, but almost a year ago or when you came back I was like, I really want I talk to you for my podcast, so we have to avoid conversations about Ethan because I want to be surprised. I want to be candid with this. So, I'm so excited that we finally got to do this.

Kaylee 55:11

Me too.

Erica 55:14

I appreciate you doing this with me.

Kaylee 55:16

Absolutely. It was really fun.

Erica 55:19

I think you have a really good perspective and a good head on your shoulders. And I'm just so grateful that we get to call you, our nurse. And for the listeners who are wondering, we are never letting her go, she will not be available to work in your home. Because we are keeping her forever,

Kaylee 55:39

Forever and ever.

Erica 55:40

However, there are a lot of people, a lot of really great nurses out there like Kaylee. And you've just heard us talk, we're very candid and comfortable with each other. And if you're starting on this journey in home health nursing, if it doesn't feel good like this, you can say no.

Kaylee