Ever thought about the life of a mom navigating the world of special needs nursing care? Here, we bring you a heartwarming and enlightening conversation with two incredible women, Kara and Kasey, who are living this reality every day. We journey with them from the moment their children's diagnosis altered their lives, to the trials and triumphs they experience in their daily lives now. This candid conversation provides an in-depth look at the world of caregiving, including the emotional impact of nursing care, managing family dynamics, and balancing work and caregiving.
We delve into the realities of providing care for medically fragile children while respecting their growth and desires as teenagers. Not only do we explore the love-hate relationship with having nurses at home, but also the continuous challenge of starting over with a new nurse each time. Kara and Kasey share the journey from survival to thriving, their growth fostering hope and support for other families in similar circumstances.
As we further this conversation, we shift our focus towards addressing unexpected challenges in parenting. Hear firsthand how Kara and Kasey manage the emotional toll of nursing care and its impacts on their lives. They also open up about their strategies for handling conflict, their stories offering valuable insights and practical advice for families in similar situations. This discussion with Kara and Kasey promises to be a source of encouragement and invaluable information you won't want to miss.
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Ever thought about the life of a mom navigating the world of special needs nursing care? Here, we bring you a heartwarming and enlightening conversation with two incredible women, Kara and Kasey, who are living this reality every day. We journey with them from the moment their children's diagnosis altered their lives, to the trials and triumphs they experience in their daily lives now. This candid conversation provides an in-depth look at the world of caregiving, including the emotional impact of nursing care, managing family dynamics, and balancing work and caregiving.
We delve into the realities of providing care for medically fragile children while respecting their growth and desires as teenagers. Not only do we explore the love-hate relationship with having nurses at home, but also the continuous challenge of starting over with a new nurse each time. Kara and Kasey share the journey from survival to thriving, their growth fostering hope and support for other families in similar circumstances.
As we further this conversation, we shift our focus towards addressing unexpected challenges in parenting. Hear firsthand how Kara and Kasey manage the emotional toll of nursing care and its impacts on their lives. They also open up about their strategies for handling conflict, their stories offering valuable insights and practical advice for families in similar situations. This discussion with Kara and Kasey promises to be a source of encouragement and invaluable information you won't want to miss.
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Hi, I'm Cara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible, and the dreams I once had for my life and family felt destroyed. This forward has many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created this special needs mom podcast to create connection and community with moms who find themselves going trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome, hello and welcome to the special needs mom podcast.
Speaker 1:I'm very excited today to have two incredible moms. What are the conversations that we're having today? I don't know how to totally summarize it. We're talking about their experience with nursing care, the reason I chose to bring this topic to the podcast is because it's coming up a lot in coaching In my one-on-one coaching sessions in the different groups that I have, the different pathway to peace groups that I have. It's coming up a lot. I totally get it. There's a lot involved in nursing care. I've actually split the conversation we had up into two podcast episodes. The first part is leaning a little bit more towards some of that emotional impact, the personal journey and how it's working. Now the latter half, or the second episode, is going to lean a little bit more towards some of the maybe tips and tricks or things that have worked or maybe how to manage stuff in your life with nursing care. It's very loose. It's not really black and white. I didn't design it to be very clearly like this part and this part it's kind of a fluid conversation, but that's generally what you can expect.
Speaker 1:The gals introduced themselves pretty thoroughly in the episode. But what I will mention is that there is a previous episode with Carrie Holt. Can't remember the episode number right off the bat. It's a few years ago, but it's a very, very well-loved episode. I think it's called Tending your Heart with Carrie Holt. I will put the link to the episode in the show notes so that you can listen to that one. It's definitely worth a listen. Then Kasey has also been part of the podcast before and she'll share a little bit more about who she is. I'm very glad to have both of these women here in this episode because they exhibit two women that are very experienced but also always learning. That's one thing I appreciate about this community here is that I think all of us have not arrived Yet. It doesn't mean that we haven't had some successes or found some things that work for us. I'll stop talking. Let's get into the episode. Carrie and Kasey. Welcome to the Special Needs Mom podcast.
Speaker 2:Thank you for having us.
Speaker 1:Yeah, let's start with a little bit more thorough introductions. Carrie, I'm going to ask you to go first. Tell us a little bit about you as a mom, as a caregiver, as a podcaster, and love to hear a little bit more.
Speaker 2:Sure, I am Carrie M Holt. I'm from central Ohio. I co-host the podcast Take Heart Special Moms alongside Sarah and Amy. We had a book come out in May, which was lovely Then.
Speaker 2:As far as my journey personally, I've been married to my husband, Bruce, for 23 years. We have four children, ranging in ages from 20 to 13. We have three sons and a daughter. Our oldest son is a sophomore in college. Our third son, Toby, who is 16, he is our son with a disability special needs.
Speaker 2:We were introduced into that world when I was pregnant. My 20-week ultrasound we found out he had spina bifida and hydrocephalus. When he was two and a half weeks old he had something called a Kiari crisis where he went into respiratory failure. That is what introduced us into the world of having private duty nursing, or home nursing, depending on how you label that. We spent two months in the hospital. He came home with a trach ventilator and a feeding tube. We have had nursing in our home for the last 16 and a half years. It has ebbed and flowed through different stages. I think one time I sat down and tried to make a list of all the nurses who've been in our home, and it's over 40, I believe at this point I know I missed some, because you interview and don't hire, or they show up for two days and then they stop showing up.
Speaker 2:We know this world of nursing and caregiving quite well.
Speaker 1:Yeah, it sounds like it. This is a lot of years of experience. Well, thank you, and Casey, let's hear a little bit about you and your journey into nursing care as well.
Speaker 3:Yeah, so my name is Casey Craig and I live in Southwest Missouri and professionally I am the Executive Director for the Cute Syndrome Foundation, which helps support families and patients with the genetic mutation called SCNAA. And so how I was introduced to this world was my youngest daughter, so I guess I should back up a little bit. So I've been married to my husband for almost 16 years. We have a 12-year-old named Lincoln, and then we were introduced to the special needs world with my daughter Stella. She just turned eight and my entire pregnancy and the first like six weeks of her life was ignorance is bliss. We thought everything was perfectly fine and everything was just going to be hunky dory. And then she decided to have a tonic-climax seizure at six weeks old. That was over eight minutes.
Speaker 3:And then that kind of turned into this whole cascade of events of us going to our nearest children's hospital, which is like four and a half hours away, doing so many testing and then getting the genetic results back. And at the beginning of that journey I remember our number one worry was oh my gosh, what if she's on a seizure medication and she can't drive when she's 16? Like, oh gosh, how horrible would that be? Okay, we'll just move to Chicago and she can ride the L and be independent. And then within like two and a half three weeks now we're talking about like major genetic issues To now is it will she ever walk, will she ever talk? Will she live past the age of two? So this was just this huge paradigm shift and we were really struggling with, obviously, that diagnosis.
Speaker 3:But then she started in with like the not sleeping and the screaming and hours and hours and hours, and my husband and I both had to keep our full-time jobs.
Speaker 3:I was the primary breadwinner, I kept insurance on the kids, like we could not lose that and due to us both being able to work or having to work, we did not qualify for a Medicaid in the state of Missouri. So for the first two years of Stella's life we had zero help, zero nursing care. She was up about every two hours screaming her little head off. I would take three hour shift and my husband would take a three hour shift and then we would work a full-time job the next day. We were literally walking around like zombies and we're desperate for help. So finally, through the state of Missouri, we were able to get a Medicaid waiver called the Serolopas waiver. That got us a nursing and then be self-directed hours, so we'll talk more about that later. But it really just kind of opened us up to, oh my gosh, we can have some breathing room and have some help in our home.
Speaker 1:Isn't it incredible when we look back at these seasons in our life, like for you, when you were taking three hour shifts of sleeping for years, right? And then, I'm sure, carrie, you have your moments where you have your own audacious story, like wise for myself, and you look back and you're like I don't even know how I did that, people asking me the question, like I don't know how you do it. You're like I actually don't know how I did it. So I think it's I don't know, incredible to look back. So thank you both of you for giving us a quick little snippet, a little window into your lives. And what I want to start with is looking at the evolution of your relationship to nursing care. So this can be both actually, like you mentioned a little bit about how and when it started, but I know, casey, you mentioned like it started off a little bit, like less frequently, and then it grew. So, casey, why don't you start us off with this journey and this evolution where you started and even where you are now?
Speaker 3:Yeah. So, like I said, the first opening of oh my gosh, we can have some help, we were just wanting like a night or two. We're like, oh gosh, how amazing would it be if we got to sleep for one or two nights a week? Wouldn't that be wonderful? And then, once we got one or two nights, it was like gosh, what can we do if we had three or four nights? And then, as we kind of grew our nursing and our self-directed hours and then we got all five you know, all five nights of the week covered. Then it turned into the weekend and I was like gosh, this is really nice and honestly, for the first gosh, probably first year, we were just trying to make up sleep that we had lost for two years, and so it really just started out as survival, like what, what kind of help can we get just to survive? And then it kind of turned in and morphed into a gosh. What if I had some daytime help? Because at that point in time I was working like two days at home, three days away from home. What if on those two days I had people that could help with the morning routine, with my, you know, with her and my son, or in the evening too, so I can cook dinner Like gosh. What would that feel like. And so then it just kind of kept growing.
Speaker 3:And I know we've talked a lot, kara, so I'll share real quick that I am in the Pathway to Peace program, the coaching program, and we kind of started this unique, I guess, group, if you will. So with the Cute Syndrome Foundation we were able to set aside some funds and actually support like up to eight family members to come for the Pathway to Peace and so they could get that coaching for free. And so we've had a lot of discussions about like building your team. And you know, what did you do? Or what do you want to do?
Speaker 3:You know, do you want to look at professional aspirations? Do you want to just have time to be able to take a nap or go enjoy, you know, life? Just a little bit, you know, and or a lot, depending on the coverage. And so that has really made me think okay, what kind of support do I need to be able to actually like sit down and take a breath, and it's not just survival, and it's actually like living and thriving and be able to have a career but also be able to go on vacation or take a nap or, you know, read a book, things like that. So I think that that's kind of we started out as major survival and then, now that I've got these key people, I feel like I'm so well supported that I can do these other things and I can dream about these other things instead of just like, oh, that will never happen for me.
Speaker 1:I think that's such a good point to mention the shifts from survival into, like actually you dreaming, because a lot of people that are in that survival or even the next stage, where they're kind of like sacrificing it all to care for their child, what they miss most is that they miss like having hopes for their life, kind of the things that they always wanted, and even though they know that it might look different, like they don't have anything at all. And what I want to say is it's completely normal, if you're in survival state, that you don't have those thoughts, that you are not hoping and dreaming, you're surviving. And what I want to point out about that is that there are these distinct stages of evolutions. I talk about it a lot in different episodes of what I call the evolution of a specialist mom, because good news is you're not going to be in survival forever. Like, you will change and evolve, and it doesn't mean we won't return to survival at some point.
Speaker 1:So thank you so much for that, casey. And so, carrie, let's turn to you. Why don't you share a little bit about your relationship in a nursing? How did it start? How was it then and how is it now?
Speaker 2:Yeah, so our journey is probably a little bit flipped with Casey's in that when we were getting ready probably a month before we were getting ready to take our son home from the hospital, they weren't going to let us leave without nursing care in our house because my son had a trach and that's considered an unstable airway which it was very unstable then and he was on a ventilator 24 seven. He's now just on a ventilator when he sleeps. But those two things automatically qualify you typically through most insurances and state waivers for nursing, and so we were covered 16 hours a day, seven days a week. It was just finding the nurses and at the time I had three children, three and under, so I had a two year old son that gave me chills Three and a half year old son.
Speaker 2:And then I'm bringing home this medically fragile child and I had one moment I remember. So my son was in the hospital eight days because he had two surgeries a surgery to close the open homeless, back the day he was born, and a surgery to place a shunt four days later. So eight days he comes home. And I can remember I grew up in Michigan. My parents had my other older two boys and the day they brought them home and they left, this was before he ended up with the trach. We were home about 10 days before the second major medical thing happened and I just remember thinking okay, I'm nursing two to three hours. We have to empty his bladder with the catheter every two to three hours. Those two things don't necessarily coincide. I knew he had reflux, he was doing some projectile vomiting, there were symptoms that things were coming, and then I have these two little boys that I'm running to preschool trying to crowd and again, you know, it's just that thing of like. I don't know how I'm going to do this. I really don't know how, and at that time we wouldn't have qualified, I don't think, for any nursing care whatsoever. So fast forward, it's just been.
Speaker 2:At one point he finally qualified for a Medicaid waiver and we have a couple nurses that have been with us since he was about a year old. But it just honestly ebbs and flows. We've had nurses with us 15 years. We've had nurses with us a year and sometimes I just have this love hate relationship with it because there have been people watching me parent for the last 17 years. I mean, I'm, my oldest is 20 and my next son is 18 and they watched me have another baby and navigate that after Toby we have a daughter who's three or younger than him, and so it's just been. And then there honestly, has been a point, as Toby has gotten older, he's gotten a little bit more independent that we're in this kind of strange stage right now where he is starting to have a say. He can talk. He's fully developmentally appropriate for talking for his age for the most part, and now we just had a recent situation where he was personally having boundary issues with a nurse. Now he and I are navigating this together because he still has a ventilator, he still has a trach and we were also in and out of the hospital for the first 14 years of his life. He had 60 surgeries in those first 15 or so years of his life.
Speaker 2:So it's just been this ebb and flow of really really needing so much help and honestly I'm so grateful because I think it's helped to keep our marriage healthy and allowed us to get away and allowed us to not feel so guilty about our other kids and them being involved in sports and that kind of stuff like that has been wonderful. But at the same time, every time a new nurse walks through my door at this point I hate starting over. It's a buildup of trust. You're having to interview them and let them into your home and I've learned some things that I can share later, some tips and tricks.
Speaker 2:But honestly, just recently we've lost quite a bit of our nursing again and the thought of starting over makes me sick to my stomach because I just I feel like we've given so much of our lives and hearts away to nurses through the years that have had an impact on our lives and then they just walk out of our lives, right, because they move on to new jobs or the situation didn't work out or Whatever that case may be. And there's a part where you just start to get kind of cynical and you're like I really do not have the mental, emotional, spiritual capacity to start over again. So it's, it's been interesting. I'm kind of in that stage right now and it's been a little bit difficult.
Speaker 1:So yeah, I've talked recently on the podcast about me being personally in a space where I've realized, oh, I'm actually under supported. So I'm taking a look at, kind of where I've gotten stuck in. That Turns out even though I'm a coach, I get stuck too. I think that's important to mention, right that we all have our areas. And I think there's this piece about support where there's this tension between the effort it takes to get it and the gift of receiving it. So, as you're speaking, carrie, it's like, well, of course, having a nurse is likely beneficial, but, like you mentioned, the emotional toll, the personal, all the different relational tolls, like Toby's kind of not maybe loving it, like, oh my gosh, like there's so much to weigh in all this. So I guess what I would put in here is like this is just another place. Yet another one is to bring so much compassion to ourselves as we are navigating this and not making ourselves wrong for either having or not having the support that we have and, if we are resistant, not making ourselves wrong for that, because it's real easy to kind of turn on ourselves and be like, well, what's wrong with you? Like why aren't you doing this or doing that?
Speaker 1:And I also want to mention a little bit about just relating to Toby's voicing his preference, and he's just a little bit older than my son my son's 14 now and we were at an event this weekend where I was essentially following him around. He was willing around on his own, but I was following him around because why I knew exactly what he was going to be doing and it wasn't things I wanted him to be doing. And so he looked he's like getting kind of mad. He's like mom, why are you stalking me? And I said well, levi, I don't know what I said. Basically, there's this tension of like they need the help, right, probably you know, if you're on a ventilator, there's probably a great reason why insurance pays for a nurse. It's necessary. But how do we honor their wishes and desires to grow up as teenagers and also to keep them safe? And I don't have the answer to that. I guess I just want to put it out there, as this is what we're working with.
Speaker 3:I was just going to jump into something that just kind of came to mind. And both of us have, you know, other children and essentially these people are in their lives too, and so you know they're navigating. You know, my son was five, I guess, when Stella first started getting nursing care, and he's a little boy who runs around in his underwear. Well, now he's 12. I'm like, okay, buddy, we probably need to get you like a robe to wear, and you know things like that. But like this is his house, like that stinks, that he's not able to do that, and just a real quick, funny story. So again, he was five when we started having these essentially young girls.
Speaker 3:We hired nursing students. At first he called them our guests, our overnight guests. I had to like warn his kindergarten teacher. Like hey, when Lincoln talks about our overnight guests, morgan and Sydney and Shelby, like what he's talking about? I'm sure she's like what are they running in their house? It's such a foreign thing for other people to understand and relate to that. Like I'm always really upfront with you know teachers or other people, or like him having a sleepover, Like I have to warn you know those parents. Like hey, just FYI, like we have overnight nursing, so someone's like upstairs all the time and that's just. You know something that you typically don't have to talk to other parents or families about.
Speaker 1:So yeah, but also something that is very foreign to them, like, oh wow, you have somebody in your home that's not your family, it's you know. I can only imagine the looks that you get when you do start to engage in that conversation. So let me get real clear on where exactly you guys are at now with what you have in terms of nursing care, like when do they come, how often? What are your situations?
Speaker 2:So right now we have a nurse, a day nurse, like two days a week. Our shifts are about 730 to 430. And then we have night nursing, completely covered. It's a night shift, 10 to 10 p to 6a and 11 p to 7a on the weekends. And that's even tricky because our son's room is right next to ours.
Speaker 2:And just to like, I had this conversation with my husband just a couple of weeks ago because and not to get too personal but I said to him I don't think we realize sometimes the amount of trauma that has been on our marriage relationship and I think sometimes he and I are both a little bit perfectionist. So it's like, well, if we're not doing this this way or we're not achieving this this way, that our marriage isn't thriving or whatever. And I'm learning that We've had nurses, night nurses, in our house for the last 16 and a half years. You can't tell me that doesn't affect intimacy. And now, as you have teenagers, teenagers stay up late, like you said, when boys have sleepovers, our daughter has people or we have family come in and we've had to learn how to navigate and adjust.
Speaker 2:And then we also have a respite nurse that she is kind of been our lifesaver she spent with us. I think she's been with us the longest, about 16 years, bless her heart, like she has grown up with Toby. But she kind of covers, you know, like 32 hours a month. So if there's an evening like six to nine, I'm running a kid to practice or we have to leave and my husband I have to go out for client dinner or something Like work related. I am a stay at home mom but we are pretty active in volunteering and church and different things, and our older two boys were basically in travel, sports, basketball for many years, so that's kind of when she has covered that nursing. One of the things that I have learned is and maybe you're going to ask this question but is how to navigate those different boundaries, how to hire somebody and what that looks like in your house, and I can expand on that a little bit.
Speaker 1:But yeah, well, I'm glad you mentioned this complexity of the intimacy piece. Actually, this is also an issue I think you mentioned with teenage kids. My oldest is a teenager and so is Levi, but it has created some challenges. And I was talking to Casey at a conference recently and I'm going to have a episode actually from I don't know exactly what she calls herself, but essentially a conversation about intimacy. She's actually a nurse by training, but her area of expertise is in women's pleasure and women's sexuality and I think it's going to be really great to talk about that.
Speaker 1:We'll be pulling the audience to be like what do you guys want to talk about? Because this could get juicy. It's kind of also making me nervous. My hands are sweating a little bit already. Okay, back to nursing. Let's talk a little bit about some of those challenge areas. I think it's obvious that you guys have spoken to like how the relief has brought you the ability to do things for other parts of your life. But I hear a lot especially when people are kind of maybe just awarded some hours the hesitancy and maybe even the story or narratives that come up. I hear the word guilt a lot, and so if you would speak to a little bit about what was your more emotional impact early on and even now. So whatever feels kind of most important to share about having again this in-home nursing component of your life?
Speaker 3:So right now we are fully staffed, I would say with nursing and self-directed hours, but just like everyone else, that could change at any moment.
Speaker 1:Casey, clarify what fully staffs mean actually. Oh yeah, if you don't mind, I didn't let you answer the release, but thank you.
Speaker 3:Yeah, no, you're just fine. So I think fully, staff really means the different things and different seasons of our lives, for sure, but as of right now, how I feel most supported is we have overnight help every single night. So sometimes they come in at six, sometimes they're coming in at nine and they leave somewhere around eight o'clock in the morning. So that's every night. And then we also have during the day, because I do work from home. We have help on Monday through Friday and the timing kind of changes but somewhere around the eight to six or nine to six hours and I am able to use nursing hours and self-directed hours, which are completely different budgets, so I'm able to kind of work that around to wherever we need. So like if Lincoln has a particular concert at school or something like that, or if we want to go away for a 24-hour little getaway or something like that, we can do that. And again, that kind of morphed into. Sometimes it depends on who you have and if you really like them and if they want more hours. So I have one nurse right now that is just an absolute rock star, love her, easy to get along with and she was like, hey, I'm kind of looking for some more hours. Do you have any thoughts? I'm like, yeah, do you want to work some Saturdays here and there? I have a lot of organizational projects I'd like to get done and it would be really nice.
Speaker 3:I don't know if I mentioned this earlier, but Stella's needs are very complex. She does not have a trach, but she has a G-tomb. She essentially is a solo tone that she cannot hold up. Her own head, she cannot sit up. She's wheelchair bound. Every little thing, everything to being cast, suppository, feeding, anything, you know, someone else has to help her with, and there is a lot of.
Speaker 3:I found a lot of guilt if I didn't have help and I was trying to work or do something else and essentially she was just there. No one was playing with her. She might have her eye gaze communication device or something like that, but even that's work Playing with SwitchToys is work for her and so I found that I felt really guilty if I wasn't 100% paying attention to her. But I also had all these other responsibilities and so it helped me to know that I had someone here and their sole focus is Stella and to take care of Stella and to play with Stella and to read to her and do those things. So then that way I can kind of set myself away and say, okay, this is my work time and this is when I'm working on this, and so that's helped a lot.
Speaker 1:So also kind of going back to your star, is like you were in such a state of survival. It seems like when you have the opportunity for nursing care, maybe it was less guilt but more relief for you. It was like, oh my gosh, we can finally kind of maybe function. And so what would you say are those kind of lingering thoughts or even areas of grief about having this support component of your life?
Speaker 3:I do find myself, because we are fully staffed or supported at this point in time, that I start playing this narrative in my head of maybe I should be spending more time with Stella, like I should be the one that's playing with her, I should be the one that's reading her these books, I should be doing these things during the week, and we don't know how much time we're going to have with Stella. We know her life expectancy is limited. We just don't know what the future holds. And so am I going to regret that? Am I going to regret not spending more one-on-one time with her? So that is something that I kind of struggle with. But then, at the same time, I'm trying to think like, well, if I had a typical child and they were home, I would be sending them to daycare so I could work, and that's what I did with my son, and so is that much different to have those people here to help support me, so then I can work and do these other things. And what fun is it for her to have a mom that's trying to do 15 things at once, versus having someone that's dedicated to her?
Speaker 3:The overnight is like a blessing and a curse, just like you were talking about. Yeah, I mean, we have three sound machines and the bathroom fan going at all times, because, yeah, it's like, ooh, can they hear the TV show we're watching? Like all these things, because my daughter's room is right next to us as well and they hang out in the living room or kitchen area, which is all open. So, yeah, there's just always that lingering thought you can't go out and get yourself a glass of milk or a snack without getting fully dressed and walking outside, and it is your own home. It can be taxing, but at the same time, I don't think we could survive without overnight help. There's just we wouldn't get any sleep.
Speaker 1:Yeah Well, thank you for sharing the things that come up in your headspace. Now, like that, I should be the one or that area of guilt that kind of creeps in. It sounds like you do a pretty effective job of questioning it and saying, well, is that really true? So well done, and let's move to you, carrie. Same question of kind of looking at what are those things or stories that start to spin in your head that cause you an experience that's undesirable for you.
Speaker 2:Yeah, so probably this is more recent than in the beginning. Well, let me go back a little bit. I can remember through the years, probably one of my biggest struggles has just not necessarily been about the nursing per se, but just the need for nursing. So, for instance, you know, my husband would call me from work and say, hey, we can get tickets to the high state book I gave him this weekend. Do we have a nurse? And we wouldn't. And every time we would try to do something together. We have to plan a nurse and a babysitter. So it's because, and where we are, the way our nursing is set up, nurses cannot be responsible for other children and so when they were younger, especially in our kids, we're not considered of an age to be home by themselves. You know, quote unquote even though the nurses there, it was always a nurse and a babysitter every single time.
Speaker 2:And I remember just feeling so constrained by the nursing our son's needs, the fact that most other parents can just pick up on a whim and go do things, or, you know, they can throw their kids in the car and and go, and we couldn't, and so that, honestly, like I have had to wrestle just with comparison, with that and then more recently it's just kind of like I mentioned earlier with Toby, helping him to learn how to advocate and for me to listen to him. And in the last couple of years he was just having a really hard struggle with one of the nurses he had and they they weren't necessarily getting along for a while, but he can be very black and white. You know he will tell you like it is. You know he thinks that you're doing something wrong. He's going to tell you you're doing it wrong and he'll say I am a pro at this, you know. I know what I'm talking about. Don't do it that way.
Speaker 2:And it was really hard for me to have people say to me we're leaving your home because of your child's behavior and all of a sudden, like immediately when I say that, the tears come because I feel like I have made a mistake in my parenting and you know all of that. It feels like that narrative of well, I've messed up somewhere in parenting this child and not wait, he's had 15 brain surgeries, he has hydrocephalus. These nurses can leave our home and go to other cases and have much more difficult situations than they have in ours. You know, maybe it's not a good fit. So it's just rewriting that narrative of how do I help him advocate with kindness for himself and also accept that not everyone's going to be a good fit. That was kind of easier in the early days when it was just me making those decisions, and I will say this to anyone listening I think depending on the nursing agencies that you use, or however you are hiring nurses, you have the right to interview that nurse before they come into your home and train and acclimate.
Speaker 2:Over the years I developed just this gut instinct of if they didn't take their shoes off when they walked into my house, they were probably not going to last, because it means they're not respecting our home, they're not navigating, you know, hey, do, should I take my shoes off? And another part of that too has been like you said, casey, how they interact with their other kids, because there have been times my older boys tell a story about how one time I was gone, I think my husband and I were out of town and we had a nurse with my mom. My mom was here staying with their kids. They were at the park and one of my boys, you know, grabbed Toby's wheelchair and they're pushing him around the accessible playground and running with him and treating him like he's a normal kid. Right, this nurse steps in like shoves my kid out of the way and is like no, you're not going to do that to Toby, and she didn't last very long.
Speaker 2:But just you know, there are those situations where if a nurse comes in and they're too comfortable right away and they're trying to take over my home, it's not going to be a good fit. So that's been a challenge too. Just how do you balance conflict and go to that person? When has it gone too far and you bring in a supervisor and then it's just that perfectionism in me. You know they always got to do it my way. What do you let go? Yeah, just dealing with that mentally and personally.
Speaker 1:There's so much there and actually I'm going to let a lot of those questions that you just asked I'm going to have those be a teaser for the part two of this conversation. The second part of this conversation is going to lead into a little bit more of you guys sharing your experience with what's worked. You know, casey knows I'm all about identity and really knowing who you are in any given role, and clearly the role of managing in home care is very different than the typical mother experience. I especially noticed this carry when you're rattling off the schedule and it's almost like you're reporting shift, like in the sense of like that's part of your role as you manage. So anything to wrap up this part of the episode that you didn't get to say or share from this last little conversation before we move into some of the more technical pieces.
Speaker 3:I could just throw in there really quickly that one of the other things that I struggle with is that my livelihood is completely responsible by other people. Sometimes, like you know, if I don't have nursing overnight, then now I'm not going to be able to do my job tomorrow or I'm not going to be able to function, and I really struggled with that on. You know how, if they don't show up or if they're not doing their job, then I can't be in the position to do what I need to do or be the person that I need to be, because I'm well rested or, you know, whatever. So it is really hard. Whenever you know someone calls in an hour before their overnight shift where I can't get anyone else in, it completely changes your entire demeanor. You know my husband and I just deflate. We're like, oh man, it's going to be a rough night. You know, buckle up. Here we go.
Speaker 1:Yeah, and I hear this a lot actually the experience of these sudden surprises that shift everything and that you really ultimately don't have control of. You know, I think that's one of the things that I think is really important to me is nursing care, or something completely different. I think this is one of those through lines, through all the different special needs parenting that we deal with constantly. All right, well, we're going to take a quick pause there and we're going to pick up the conversation next week and we're going to continue where we left off. So I'm going to go ahead and share some of the real tips and tricks and what's worked and ideas and really address some of the difficulties of dealing with conflict and having somebody working inside of your own home. We'll see you on the next show.