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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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.
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.
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.
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.
I have to ask, what did you want to be when you grew up?
I really wanted to be a marine biologist.
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.
So do you have any pets?
Yes, I have three kitties. They are my entire life. My little fur babies.
Kaylee, what is your favorite thing to nerd out on?
Hmm, that's a tough one. I nerd out on so much.
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?!?"
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.
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.
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.
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
I have so many fortnight dreams! So I definitely understand.
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?
Definitely. We're introverted extroverts.
We are introverts who know how to play the role of an extrovert really well.
That's pretty accurate actually.
We know how to wear that hat. But we don't want to. Like we just do when we have to.
Right. And we can still enjoy it. But it doesn't mean that we don't want to get home right away.
Oh, I know. What is one thing you are presently grateful for?
My fiance Miranda.
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.
You guys have done a lot of growing together.
What is one of the best pieces of advice you've ever received?
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.
I love how you're like, "She told me..." Like you...
She did! She straight up told me I'm a Gosh Dang Cheetah!
(laughter) Love it! You are a cheetah!
You're a cheetah too! We're all cheetahs.
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.
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?
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.
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.
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...
This instance it worked out really well.
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?
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.
What is Ethan's favorite movie?
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.
What is Ethan's favorite activity?
His favorite activity hands down is riding his bicycle. He is a hardcore biker.
Does it make you nervous?
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.
Awwwe! There's something you've told me in the past, and I think it's awesome. His love for Toy Story.
Well, he definitely shares your’s and the kids’ love for Disney in general. Just all things Disney. And when the toys....
(laughter) I love how you grouped me into that.
(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!
You know what I love about that?
Forky is, at first the outcast. fork, he doesn't look like any of the other toys.
That's true. He wasn't even a toy at first, he was made into a toy.
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?
Yeah, I didn't even think about that.
Does Ethan have any pets?
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.
Awwwee. Does Ethan have a favorite person?
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.
Does Ethan ever get sassy or annoyed? And if so, what is the typical cause?
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.
What makes Ethan smile?
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.
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?