Part 1: Introduction to Snyder's Hope Theory for Parents Raising Children with Special Medical Needs

In Part 1, Snyder's Hope Theory takes the spotlight, unveiling its profound impact on navigating life's hurdles, especially when it comes to  parenting children facing medical challenges.  As we dissect the elements of hope—goals, pathways, and agency—we translate them into tangible strategies for fostering resilience, both in harrowing times and the mundane stretches of everyday life.

The conversation takes a turn through the festive season's joy, reflecting on the importance of family and health.  As the rhythm of routine beckons with the return of school bells, we reflect on the simple joys and trials of parenting, from the evolution of homeschooling to creating a 'comfort box' that grants Charlotte the gift of self-soothing during the night.

Lastly, hope shifts from an abstract emotion to a concrete mindset, a tool for advocacy and navigating the labyrinth of life's challenges. We dissect the pragmatic side of hope, illuminating how it can bring solace and solutions to the daunting journey of raising a child with medical needs. By sharing our experiences and the comforting echo of community support, this episode is an invitation to a sanctuary of shared stories and encouragement. So tune in, and let's walk together on this path of empowered growth and relentless hope.

Additional Resource:
"Snyder Hope Theory" by Society Supports Alliance - this is not our video: https://youtu.be/zTVVaVIE9yw?si=LXWUftTbHYVhIFo1

Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc

Transcript

Speaker 1: 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while empowered by hope, is here for you, Though we wish you didn't know this heartache.

Speaker 2: 0:25

we're so glad you found us, so together we can walk this journey in hope. Welcome to the Empowered by Hope podcast brought to you by Charlotte's Hope Foundation. We have Emily Whiting and Ashlyn Thompson here today, and we are elated to join you in 2024. Let's see when you get this. It'll be mid-2024 of January, mid-january 2024. Anyway, so we hope your year is off to a good start, and today's topic is one that we've been talking about having since the very beginning, and I'm so glad, like the timing of it being at the beginning of the year is fun.

Speaker 2: 1:10

We're going to talk about Snyder's Hope Theory, and the Snyder's Hope Theory is a series of medical papers and also papers, I believe, that have extended far beyond medical application, business application, lots of other different things but from a medical standpoint it's a series of papers that basically quantify and qualify meaning from a numerical standpoint and, from a insights from people standpoint, confirm that hope does directly impact outcomes for children, and in these series of papers it talks about how do parents get and maintain hope and how does that directly impact their child's care. And so today we're going to give the very big picture of what it is Snyder's Hope Theory and then talk about the three things that make up hope, that this research has discovered, it's goals, pathways and agency, which I like to think of more as because that doesn't really mean much to me Goals, support system and mindset is kind of how I've rephrased it, emily Snyder's Hope Theory no, I'm just kidding, anyway. And so we're going to talk about how do we like? Okay, so it's good to know that hope might help us with improving our child's outcomes, but how do we actually do that? How do we, you know, attain hope. So we're going to talk about that, and it's going to be great, right, ashlyn?

Speaker 3: 2:41

I'm excited to do a little like maybe 15,000 foot view, maybe not all the way up in the sky, but we'll get a little bit closer and dive in. This is fun research, which I don't normally put those two words in the same sentence. But I'm excited to dive in this because it is totally relevant for what we're doing here, what we're talking about, what we're living. But the cool thing is, like you alluded to Emily, it really is a great way to look at problem solving in life in general. It's got some really great skills that are awesome to absorb and apply to our lives in a lot of ways. So that's going to be fun to jump into. But first let's do a little bit of catch up. I'm sitting here, I am standing at my stand I see that I'm envious. I'm trying something different, so I have so much more movement and I'm bouncing around, so hopefully not distracting Emily too much on the camera. I love it.

Speaker 3: 3:44

Yeah, so I am trying to embrace my own well-being this year, not like a hardcore health kick. I'm not looking to get ripped and be able to lift twice my body weight, anything like that. I don't know what the other size is a part of my year, but just really working on and paying attention to what does my well-being actually mean to me? What does it feel like when it's at its peak, which I'm pretty sure. It's been a very long time since I've been able to experience that and I'm really really grateful and excited that I feel like God has got me in this little bit of a pocket right now that I don't want to pop, of being able to explore that, of feeling really good.

Speaker 3: 4:32

I said in our last episode this was the first Christmas in five years that there wasn't some like doom and gloom hanging over my shoulders, my family's shoulders, it was just. It felt like what you want the holidays to feel like. Right, it wasn't about the guests, it was just about really thinking about the reason and connecting with everything that goes into the Christmas story and why we celebrate, and just embracing my family and all the gratitude that everybody was there and healthy, and knowing that those that I love, who are gone and missed, were having, no doubt, in my opinion, the time of well, I don't know if time of their lives is the right statement Sure, we're having an absolute hearty in heaven. So that's how I'll put it. I love it. Anyway, I overthink that. So no, things are great.

Speaker 3: 5:37

I told Emily that this week I tried something that I've never done before, which is red light therapy, and I'm going to throw this in here because our attorney would probably appreciate it. Never are we ever recommending anything that is a medical treatment, recovery treatment, anything whatsoever. It is completely up to you to do your own research and consult with your own medical team, but I decided to try red light therapy. I love that plug.

Speaker 2: 6:05

Do not sue us when you try.

Speaker 1: 6:07

Maybe it doesn't work. That was for Roger, but it was really cool.

Speaker 3: 6:15

I had no idea what to expect. I had just been reading about it lately. I had heard that red light therapy has a lot of research going into it and they're seeing a lot of benefits for it. Of course, everything is anti-aging. It's for your skin, elasticity, collagen, blah, blah, blah all those things. I think I'll get me wrong. I could definitely use help with those, because stress is a killer on the face and the skin. But I had also been reading about how it's linked to positive results for that mental health status, for emotional health, for people who have maybe some slight depression or struggle with anxiety. That research also led me to some studies showing that it has some positive effects on people who have experienced chronic stress and trauma. I'm in that book.

Speaker 3: 7:12

I did it. It was just 25 minutes of laying in what felt like I think I told you you know those roll up sunscreens you can put in your windshield of your car in the summer so it doesn't get too hot. Yeah, it felt like I was wrapped in those. It was kind of comical looking, I'm sure, but it was extremely relaxing. I just laid in that for 25 minutes. Then afterwards I stood on one of those Vibe plates for 10 minutes, while it shook me and rattled me and made me laugh because apparently I'm a little kid I was like this is hilarious. I would have been laughing too. I was in the best mood later and I remember being like why am I so happy? But I just literally felt lighter, like physically, mentally. I just felt so refreshed and my husband was even noticed and I was like we're going to get on this train, we're going to try this and see if it was you know, was it a one-time placebo effect?

Speaker 3: 8:16

I don't know, but I'm excited to report back on.

Speaker 2: 8:20

I'll be here to hear Okay, so is this something you bought and brought home, or do you like go to a facility?

Speaker 3: 8:27

Tell me the details. No, I went to a place that was running a special. I saw so. So I went to an office to do this. But there's another place that I'm going to go try where it's one. You actually go, you walk into it. It's like a. It almost reminds me of like a stand up tanning bed.

Speaker 2: 8:44

Sana yeah.

Speaker 3: 8:46

I'm sure, but which would be a joke with my redheaded, fair skin self. But it'd be better than it, I could say. The stand up one is a little bit shorter. My attention span, as you know, is not the greatest. I get a little anxious when I have to sit still.

Speaker 2: 9:03

Yes, she says as she bounces while recording.

Speaker 3: 9:07

Yeah, I know a lot of people have like those. Have you seen like the red light masks that people wear, like they like? No, it's like a. They look like they've got like a hockey mask or like the white Jason Jason on their face but that it's got like red lights glowing under it. I know a lot of people have those at home and are supposed to be really good for your skin. That's one of those things that I would trick myself into saying like, oh, I should buy this and have it at home and then it will live in the land of all the other things I'm going to use and I get like three days in and then day four and five, I'm like, oh, I need to get back to that.

Speaker 3: 9:41

Might do it for a couple more days. And then three or four weeks later, I'm like, oh, shoot, I should probably start that up again.

Speaker 2: 9:47

Exactly, exactly. That's hilarious, oh, that's awesome. Well, we will be staying tuned to learn about this red light therapy. I'm definitely in, like you know, the I don't even know the right words scale of adapters for new technology. Of course, this isn't new, but you know a different approach to things. I'm the one that, like, waits till everybody else tested it and then maybe I'll try it.

Speaker 3: 10:13

I think we'll get hit by the bus because I'll walk out first.

Speaker 2: 10:17

We are definitely opposites. Yes, I love it. I'm like, well, someday, when it's proven by a million people that it works, then maybe I'll try it. I love it. That's awesome.

Speaker 3: 10:29

I don't trust other people's opinion, so therefore I must try it myself. That's awesome. That might explain a lot of the issues I've had.

Speaker 2: 10:38

but it's all good. Oh my gosh, no, it's all good. So anything else in your world?

Speaker 3: 10:45

The kids are well. Cole is back to school, which is a very good thing. We needed some structured routine back in our lives. But I was telling Emily yesterday I'm going to keep this short so we can move on to your exciting life. But I came across this account. I should link it. It's a mom who basically talks about parenting and understanding your child from a neurological developmental perspective. And Cole is a great kid. He is a lot of kid packed into one person. We get a lot of intensity from him. He's a hardcore lover and he is a hardcore fighter. Everything is intense. Ever since he was a baby it's been that way. I think that's why he's such a great sleeper, because, man, he gives every minute of every day that he's awake his all. He does not hold anything back. But we've kind of been struggling.

Speaker 3: 11:49

It's the holidays come up and you want to teach your kids gratitude, right Appreciation, and you're mortified when they're making comments like, well, do I get more to open? Or while her present looks bigger than mine. That's not fair. And you're like, oh my gosh, I'm raising this ungrateful, bratty child. This is terrible. And let me jump to the point that it's not terrible. It's all very normal. And anyway, she talks about how, if you're, basically if your child is under the age of seven which, Cole, is close to seven, she's like if you are expecting your child to be kind and courteous and gracious more often than they are not those things, you're looking at it totally wrong and your expectations are unreasonable.

Speaker 3: 12:41

Not saying that we shouldn't still be teaching our kids, but expecting those lessons that were teaching our kids to actually stick with them is borderline. I don't know if I would say impossible but that part of their brain that holds onto those lessons Remember, I am not a scientist, folks, so that's why none of this is specific language but basically what I gathered is that part of the brain is still relatively smooth and all those ridges that means that things are being learned and being held onto that develop, those neuro pathways and whatnot. Those develop all the way up into our 20s. And so to put that pressure on our children and really to put that pressure on ourselves as parents, it's all for naught. Really.

Speaker 3: 13:25

It just creates a lot of frustration, anxiety, a lot of unnecessary tension too with your kids, and just having that changed or refreshed perspective over the last week it's kind of been a game changer for me. Honestly, I've kind of found myself being like okay, maybe this is how I can call my parent, because I'm not looking at everything as a that behavior could send him to jail someday, or that behavior is going to get him into detention, Right, I'm gonna be getting calls from he's gonna have no friends because he's yeah, he's never gonna have play dates, All these things that we think, yes, right, and so, anyway, I will have to link her information.

Speaker 3: 14:08

but it's been really interesting and I just recommend period. No matter what age your kids are, it's so interesting to do research about how your kid thinks. Yeah, because it's so easy to look at everything as how we think and see everything through our eyes. But when somebody who's on the outside can tell you well, this is most likely how your child is experiencing things, it's so much easier to go ah, okay, okay, this is not a question of does my child respect me and are they obeying or disobeying? It's not about that. It's just purely their little brains are developing and it is a process and it takes a lot of repetition for things to stick, and we are really, really working hard on that repetition.

Speaker 2: 15:02

Yeah, I gotta work on the patience of the repetition. I'm not great with that.

Speaker 3: 15:06

My friend told me yesterday that patience actually comes from the Holy Spirit. So to expect ourselves to be patient, that's why it's so hard. So just ask the Holy Spirit to give us patience and that will make it easier. So I'm gonna try that.

Speaker 2: 15:19

I'll let you know. That is so true. A lot of times and I have definitely had to ask for forgiveness for this many times over. But a lot of times when I'm really frustrated with the kids, usually due to something that is pushing all my patient buttons or lack of I will mutter under my breath or sometimes say loudly Lord have mercy or Lord help me, and that sounds great, except it's usually not actually a prayer, it's more of like a curse of like you know. So I've had to ask for forgiveness, like weekly for that. But I'm working on trying to like the fact that I say that is good. It's the tone and the mental space I'm in that's not good of how I say it. So I've gotta like reframe myself and be like truly Lord have mercy, help me here.

Speaker 1: 16:06

Help.

Speaker 2: 16:07

So, anyway, okay, I think you can pass on that one. Oh man, it does really help, though Sometimes I've noticed where sometimes I'm like God, get me through the next five minutes, and then somehow life's so much better. I don't know, it's crazy. Well we so we're in the throes of getting back into homeschooling and I will admit it is a mind game homeschooling is. It's one of those. So, for those of you who are just joining us and I haven't really done much detail on this in the podcast, but we have chosen the homeschool for this year because of Charlotte's medical schedule and all the treatment she needs every day, all day just made the traditional schooling schedule nearly impossible and more stressful on me, if you can imagine then figuring out how to teach my kid kindergarten. So we've been keeping all the kids at home and I have a six year old, a four year old and a two year old, and so I've been just basically doing kindergarten for all of them. Again, do not take recommendations from me.

Speaker 2: 17:07

I'm in year one of homeschooling. It may be our last year or it may be the first of 18 years, I don't know, but bottom line is it's been very challenging. It's been very rewarding and very challenging to just figure out how to stay patient and also to be really gentle on myself of like knowing if they were in school they'd probably already be six weeks ahead of where we're at now. But then reminding myself, yes, but that's why we're homeschooling, because we're in another hospital all the time and it's not like we're just not doing school on certain days that we could, it's because we're in and out of all kinds of medical things. So it's been a mind game. But I just keep trying to come back to like we are at the same level or possibly even further than if I had centered to a physical brick and mortar building, purely because of how much she would have missed. So more on that later when I figure out more, but for now that's what we're doing.

Speaker 3: 18:02

It's been good. I wanna take a second to give you some accolades that I remember at some point in the fall that you even kept up some of the homeschooling when Charlotte was in hospital, didn't you? I did? Yeah, that's amazing and something that I would probably not have done. So I just wanna give a moment to give you some kudos, because that was impressive.

Speaker 2: 18:30

Well, thank you, we're gonna be doing it again in a few weeks when we have a whole week of being down at Cincinnati, which is four hours away from our house, for a bunch of outpatient appointments. But the beauty of homeschool is it's what I've found it to be very fitting for. This lifestyle we're living is like okay, today we're gonna practice number recognition by you finding floor number four on the elevator, you know. And boy, you have to go to suite A3. So where's the letter A and where's three? And even down to the nurse who checks you in always asks what's their full name and date of birth. So like, okay, Charlotte, what's your full name, what's your date of birth? So just because I mean, that's part of kindergarten, is learning how to say your full name and your date of birth right. So it's been really good. And when I say I do homeschool when we're at the hospital, that doesn't necessarily mean I cart all the books with me. It just means we start weaving things into elevator number finding.

Speaker 3: 19:30

Well, I love how you make it work with your life and, for all the, I'm assuming I'm not the only person who thought that homeschool meant that you had to do homeschool educating like as many hours a day as they do to public, like actual brick and mortar school. And when you were like, no, like sometimes we get school done in an hour and a half, two hours, and I was like, oh my gosh, maybe this schooling there's something to this homeschooling. Maybe it's not, as, oh, it still is really scary to me, don't get me wrong, but it's scary to me too. It is really eye opening to me and a very positive. I would put that definitely on the pros list. That, like you said, it's focused because you're not taking bathroom breaks, you're not having to make time for all the other students to complete an assignment and et cetera et cetera.

Speaker 2: 20:22

There's so much time shaped. Yeah, I mean honestly, if it takes us two hours to do school in a day, we're doing something wrong. It's taken way too long. So normally an hour max is all it takes. So, yeah, it's been good. So that's going on. We're getting ready for the Cath Lab Cardio Cath Lab next week for Charlotte. She was supposed to do it before Christmas and due to having, you know, the never ending virus of winter, it got postponed. So I won't be shocked if this one gets postponed too, which is why Ashlyn asked me yesterday how am I feeling about it? And I was like I don't know, I haven't even thought about it because it won't matter until the day before anyway, because it might get canceled.

Speaker 1: 20:59

Oh my gosh.

Speaker 2: 21:00

Yeah, and we're in the throes of just, you know, all these normal medical things that we're trying to figure out. We got a new bag for her stoma that works a thousand times better, thanks to a connection with another mom who has the same ureterostomy as we do. She's literally the only one in the world I have found that has the same ureterostomy, and so we borrowed or stole her idea of what they use, and it has worked beautifully. So I got to get to the durable medical equipment company today and be like send us more of those, because those were great. And then, last but not least, and then we can dive into our content. So I've been. This, honestly, could be its own podcast, ashlyn, and maybe we should make it one.

Speaker 2: 21:38

But we've been having a lot of trouble with Charlotte, with sleep, and I know you have with Emory too, and I reached a point a couple of weeks ago where I was like, okay, she's six, and every single night, without fail, we tuck her in and she comes out crying that she's in pain. And it's true, she is in pain, I can see it in her face, I can see it in her body, and then, several times throughout the night, she comes out and we've done we're still doing a ton from a medical standpoint trying to figure out what the source of it is, trying to help. But I came to a conclusion a couple weeks ago where I was like, okay, pain is probably always gonna be a part of Charlotte's journey and she clearly needs to learn how to self soothe. Because there's only so much I can do, like even me going to be with her in the middle of the night. It doesn't take the pain away. So being with her is helpful, but it's not Like at the end of the day.

Speaker 2: 22:35

I just realized like I'm losing sleep. I'm not a great mom because I'm crabby as crap. And then she's not, you know, she's impatient because she's tired and it's just like, okay, this is not working. So I decided to try to figure out how do I help her. Look, basically, I'm like trying to teach a newborn how to self soothe, but she's six. So I decided to create a comfort box. So I just got like this big gift box from Christmas and started. I asked Charlotte I was like, okay, when you wake up in the middle of the night, what do you think would help you feel comfortable, relaxed? So we put in crayons and paper and we put in like a little stuffed animal and a blankie she loves and a little hand massager thingy, like a thing she can hold in her hand and rub on her belly and her back when it hurts and I don't know what else, just like I was trying to find some kind of like silly putty that wouldn't make a mess in her bed.

Speaker 3: 23:26

I haven't succeeded with that yet, but I, we threw in a I thought it was. It will make a mess and there's an expert on that, oh my gosh.

Speaker 2: 23:34

Yeah, like a little matching game, something that would distract her brain, whatever. So it ended up. She's actually not used the items in the box, but the mental shift for her was huge, where she was like oh, I can actually comfort myself when I'm in pain, and I've noticed she's come out a lot less the last couple of weeks, and so that's been really interesting and it's been hard for me. Like I have to retrain myself instead of just being like go back to bed. I have to be like hey, I see that you got up. Did you try something in your comfort box? Why don't you go try coloring for a while? You know, like I got to teach myself, to teach her to self suit, but thus far it's been a huge help and I'm excited to see if it continues to be that way.

Speaker 3: 24:19

I just think it is brilliant. Like my jaw dropped when you told me about this yesterday and I was like everybody needs to know about this idea. Whether you're, you know, for whatever reason your child has trouble sleeping, whether it's pain, whether it's anxiety, whether it's typical developmental milestone they're having, you know they're trying to achieve, of being okay, being alone in their room. Shoot, probably even parents that are transitioning from, you know, a toddler bed, crib or a crib to a big bed. That could be a really great idea. But I just love how you're empowering Charlotte to have more control over her life and like how she feels and you could tell based on what you shared about her, like how proud she was of herself and I just think I mean what an incredible skill to be giving her and it's kind of an early step, honestly, like we're looking to the future of transitioning more of the control to her over how she takes care of herself.

Speaker 3: 25:30

Yeah, and like not to be, like you know, as a mom be a little sappy like I don't want to think about that far down the future, but I just think it's a really cool way to lay down the foundation for her and I just bravo. Emily gets gold stars for all the stories that she has shared today.

Speaker 2: 25:48

Oh well, so do you. We got to figure out this red light therapy thing. Yeah, it's been. You know, and I also know my personality. I tend to be the kind of person like if she's up and not feeling well, I want to be there with her. Right, I don't want her to feel like she's suffering without me. On the other hand, we're six years into this and it really doesn't help things when I'm with her, so it's like, okay, well, we need to do plan, because this is not working you know like how many years are we going to do this until we realize we need a new plan?

Speaker 2: 26:19

So yeah, and I think she reached a point in her development where she wanted to be able to soothe herself but didn't know how. So the timing was perfect. We'll see how it evolves from here, but yeah, it's exciting.

Speaker 3: 26:32

It is exciting. I keep thinking of you know the, the fable where it's. You know, teach the person to fish and will never be hungry. You know, whereas if you just give them the fish, they'll be hungry the next day and I don't know. So I think it is genius parenting, and I think it's a really big gift to her to help her develop coping skills.

Speaker 3: 26:54

That's kind of like what Kim Flood talked about right when she came on the Child Life Specialist, about how empowering and important it is to equip our children with their own coping mechanisms. A lot of times we're putting all the pressure on ourselves to help our children cope right. We want to take on their pain or take their pain away, their fear, their discomfort. But I feel like what Kim was teaching us that as children get older, there's actually more to be gained from our children learning their own coping skills. That makes them feel more powerful in those moments and probably a little less scared, knowing that, hey, I can do something about this, I don't have to just rely on other people around me. Yes, exactly.

Speaker 2: 27:35

And and also I'm trying to help Charlotte see, like, well, she knows, and I love this medicine isn't always the answer.

Speaker 2: 27:42

You know she'll come out of her room and I'll say, well, do you need? And I'll, you know, mention one of the pain management medications we have, and she'll be like, yeah, but that won't help, which I love that she has that awareness, because it's like, well, good, because I don't want you to take medicine that's not going to help. So trying to teach her, you know, it's not just medicine, it's not just mom, you also have the ability to. You know even things like we, we put up an old mobile that's for an infant but it has music, and so that's hanging in her bed now and if she's feeling uncomfortable she can turn that on and she loves music. So that's helpful, which you know she has a flashlight now and then I haven't figured out a way to help her be able to manage this herself, but we have one of those diffusers with, like you know, help the child to sleep, kind of natural oils, whatever. So, you know, just trying to like, trying to come at it from every possible angle to help.

Speaker 3: 28:37

You can get her one of the roll-on ones instead, like she might be old enough to be able to just do like a simple roll-on one as long as you, because I feel like she's a smart girl, like if you told her like don't go crazy with it, she'll be very diligent about that.

Speaker 2: 28:50

Yeah, as long as it doesn't smell like mint Anything mint she'll vomit.

Speaker 3: 28:55

Well, it makes you think of the face mask that they tried to they put you to sleep with.

Speaker 2: 28:58

Oh my gosh, the other day. Okay, and then we really will get into our content. We're going to have to put in the show notes. Jump to 30 minutes if you just want to.

Speaker 3: 29:05

We might have part one and part two, just the Boeing bit out there.

Speaker 2: 29:09

So she was eating jelly beans from her stocking the other day and she popped a pink one in her mouth and she loves pink, anything pink, and she spit it out and I was like what's the matter? She goes that tastes like bubble gum, tylenol oh, oh.

Speaker 3: 29:23

Oh, Don't spit it out too Right.

Speaker 2: 29:28

Oh Okay, so Snyder's Hope Theory yes.

Speaker 3: 29:32

So what I was thinking in preparing for this or looking over this, is let's start out with talking about just from more technical standpoint, like exactly what it is. You already talked about it somewhat at the beginning, so we don't have to spend too much time on it. But I know that you and I were talking before we hit record and I just want to say this as a precursor to diving in. If there's one thing that you all take from this I want you to be thinking about this as you're listening to us talk about it is that when we use the word hope or being hopeful hope always being available to you no matter the circumstances and we understand that the word hope sometimes can cause you to recoil and be like a slap in the face Like what do you mean that there's hope in this situation? Xyz, the hope that we're talking about is not the hope in terms of just an emotion. Right, it's not always going to be that feel good, fuzzy, warm. I can see the light. I can see the light at the end of the tunnel. It's not that.

Speaker 3: 30:40

The hope that we're talking about and that Snyder's Hope Theory talks about is looking at it as a literal way of thinking. So hope rather than being an emotion, hope is a cognition is the way that they wrote it out, and that was really helpful for me to understand because at the beginning, before I really understood Snyder's Hope Theory, sometimes I was worried is this a little assuming that any parent should be able, or has the ability to apply hope to their situation? Because I was looking at it from an emotional standpoint. That's always been my relationship with hope, and being able to step back and see it as a way of thinking almost it's a method of problem solving, if you will. Being solution oriented has been very, very helpful and it plays so well into being a killer advocate and achieving the things that you want to for your child, yourself and your family.

Speaker 2: 31:40

Yes, so well said. It really it's a mindset, is what it is. I think that's so helpful to know it's not just an emotion, because when we think it's an emotion, it can. You can almost have this immediate recoil of feeling guilty or down on yourself that oh well. If hope has a direct impact on my child's care and I'm not hopeful, well then what? What kind of parent am I, you know, and you can go in that tailspin and that is not the hope we're talking about. So if you had that thought of, like, well, I'm not hopeful, that's okay, stick with us, because I think we can redefine hope a little bit to help you be like, oh, actually I am and I'm capable of it. The other thing is I wanted to share the reason we are named Charlotte's Hope Foundation is because of Snyder's Hope Theory, and so you know we really believe in this, we, and it's not, it's not something that I mean, it's scientific, it's not just like, oh, we believe in it because it seems cool. No, this is scientifically proven to be very impactful for the parent and the child. And what I love about Snyder's Hope Theory is it gives us the three avenues, the components that help us have hopeful thinking. So that's what we're going to talk about.

Speaker 2: 32:53

What we talked about earlier, it's the goals, the pathways, the agency or, as I like to say, goals, support system and mindset. So should we just dive into goals? Let's go for it, let's do it, okay. So I think the best way for me to describe goals. We all know what goals are, but when we are hit with a diagnosis with our child oftentimes the goals we initially had and these are usually subconscious, right? It's not like you sit down and write down the goals you have for your child over the course of years, but subconsciously you might have this goal that your child's going to be healthy, that they're going to be able to do school like any other child, that they would be able to do sports, whatever. Whatever your vision is that you had, we all had it, whether we knew it or didn't. But when we're hit with a diagnosis, we're hit with the reality that many of those goals either are not attainable or need to shift in what they are, how we attain them, right.

Speaker 2: 33:55

So, for instance, I remember subconsciously I had this goal that I was going to have a very healthy child. This was not a conscious thing, but I just knew I wanted a healthy child and even after receiving the diagnosis I kept holding on to this hope that I would have this miraculous healing. And it's even written in the book. She Is, charlotte, where I thought like if I just hold on to enough hope, maybe one day God's going to snap His fingers and she's just going to pop out of that, you know, isolate, and I'm going to be like peace, doctors, we're going home, she's fine. I don't know what y'all are talking about, right, and it took a while for me to.

Speaker 2: 34:31

And that's like I'm all about miraculous healing, nothing against that but I had to come to grips with the fact that that's not probably an actual attainable goal.

Speaker 2: 34:42

Like it's great to pray for it, it's great to hope for it, but to really make it something I could attain, I had to shift my mindset from hoping for a child that was perfectly healthy, fully recognizing that was not the reality I was living, to hoping that I could help my child be at the most comfort possible each day.

Speaker 2: 35:03

Like that's how I had to shift my mindset like okay, I'm, she's probably not going to just rip off all these leads, lines and cords and be like I'm good, mom, let's go, and instead it's going to be like, okay, my job today is how do I help her thrive the best way possible within the cords, lines, leads and isolate that she's in right now, you know. So that's goals is helping really kind of shape your goals to fit the situation you're in and make it something that is truly attainable. And it becomes a lot more hopeful when you know like, oh, I can't. I can pray for miraculous healing. That's great, there's nothing wrong with that, but I can't cause that, I can't influence that. What I can influence is her comfort for today. So that's my example.

Speaker 3: 35:52

Another example that I'll share, and then we can move to the next step. But when I was pregnant with Emory, I understand or relate so well to the miracle healing.

Speaker 3: 36:04

Yes, I think we all make it all go away, just everything disappear and it all have been some terrible mistake and everything be fine. So I got into my head that, emory, I knew she was going to have bladder extra fee that was indisputable. But I got into my head that she was going to be born with her hips being close enough that she would not require that aspect of surgery, that she would not need the osteotomy, which is the breaking pelvis, which was the part that was going to require her to be in traction, all those things, and I wouldn't be able to hold her for a month. So I just held on to that. I rode that boat down the Nile River. I was the queen of Egypt or something, and when she was born and we had X-rays done, not only did she have the dioceses that they say these kids usually have, hers was the largest dioceses they had ever seen.

Speaker 3: 37:08

And at first I was heartbroken, of course. But two things happened from this. So one, the first step, was, like I said, my hope was dashed, but it wasn't. You know, what I was hoping for wasn't truly realistic. There was nothing wrong because, honestly, that kind of helped get me through pregnancy, that helped me keep myself in a good place, and I think that is completely okay, even if you're kidding yourself a little bit for a little while. Sure, we do, we have to to keep our head above water. But what I then shifted my thoughts to in terms of hopeful thinking was okay. Knowing that she has to have this, I am going to pursue the very best expert that I can possibly find and put in to you know, put my daughter in their hands so that she has the best outcome possible. And that shift helped me feel a lot better and it also helped me do a lot of research, get a lot of opinions, so that, when push came to shove, I felt much more confident about making the decision who was going to operate on her, what technique they were going to use, and feeling like I can't take this away, like that was the hope right, that she wouldn't have to have major surgery. Yeah, but what I shifted my hope to was I can make sure, or do my best to make sure, that her outcome is as strong as possible and that her recovery is as smooth as possible.

Speaker 3: 38:35

And funny enough, this is just a little aside that's really beautiful to me. So, like I mentioned, her diastasis between her pubic bones was as large as they had ever seen there. Typically it's somewhere between three and four centimeters and hers was four and a half. And while that extra doesn't sound like half a centimeter doesn't sound very big, but when you're talking about basically a newborn, that's a big difference. When she had her surgery, the ortho surgeon said he goes, I have never had the pubic bones come together so fantastically as they did. It's like I was concerned with them being so far apart, he's like, but it actually played to our favor. He's like they literally are kissing.

Speaker 3: 39:18

So he described it when he was done with her, and so that was a good reminder to stay tuned. Something that sounds really bad up front can later on serve a purpose that's better, and that's just another way, I think, that I found, to maintain hope, or to have that mindset that one piece of news doesn't necessarily determine how everything is going to play out.

Speaker 2: 39:45

Yes, yes and oh man, my mind went a million directions with that. That's such a good example and such a great story. I think, something that is important for parents out there to realize to hold on to hope does not mean to ignore the negative thoughts that you have. It means to address them head on, to look at those evil little thoughts, or just the real, practical little thoughts, to be like, okay, so let's talk about that. This is like inner dialogue right In your head or with somebody, or in a prayer journal or whatever. That I think like anything dealing with anxiety, depression, lack of hope, whatever you know, fill in the blank. Half the challenge is recognizing those fears or those that inner dialogue and being able to be like, okay, yeah, I hear you brain, I hear what you're saying. Let's really think that through.

Speaker 2: 40:41

You know, and I think what was such a good example in your story was there's so many things with our child's care that's out of our control and so it can become feeling. I mean that's one of the quickest ways for me to feel hopeless is when I feel like there's zero, there's nothing I can do to influence and positively impact Charlotte's care. That's when I lose my ever love in mind, but there's always a way you can shift your brain to be like okay, whatever it is, I thought I could control. Like I thought she would not have what did you call it? She wouldn't have the.

Speaker 3: 41:18

The diastasis between her.

Speaker 2: 41:19

Yes, so that's what you thought and that was totally fine to hold on to that hope for a while. Now you have to shift your mind to be like, okay, I can't control that, what can I control? Or maybe the better word is impact what can I influence, what can I impact? Right? So if you're like a good example, if you're in the NICU and you're feeling like nothing about your child's care is in your control, and maybe instead of I know, a shift I had to make in my brain was like I kept thinking, like I want to be able to hold her. My goal is to hold her. My goal is to go home. My goal is to go home with a healthy child.

Speaker 2: 41:52

And then I had to really reframe my mindset and thank God I had an amazing neonatologist and nurses who helped me do this to say like maybe your goal needs to be just being present with your child because she knows you're there, whether you can hold her or not. Maybe your goal needs to be just being able to be there for rounds so that you can process what's happening and be aware of what the next steps are. Or maybe your goal needs to be that you just get to cup your hands around her head and her feet today. That's it, and it's when we're able to shift our goals to be really attainable that we're able to hold on to hope and not be so defeated, feeling hopeless because things are out of our control.

Speaker 3: 42:39

That's such a good point, Emily. I think I want to pull that thread a little bit more and almost think of it in terms of embracing the idea of creating micro goals. Yeah, Small, little obtainable goals are a great way to help you keep putting one foot in front of the other because, like you said, the big goal is I want to bring, I want to go home with my child. That's a huge, huge, huge goal. That's like an umbrella over a ton of other little goals.

Speaker 3: 43:13

And the important thing for that is, I think when we have micro goals, when we build out that ladder of all the tiny little that feel small little steps to get to the ultimate goal, right, that creates a lot more opportunities for wins. Yeah, it creates a lot more opportunities to measure success and to measure opportunities for improvement, but I think it just it makes it all easier to digest. And when something is so overwhelming like this, breaking it down into really small steps is a good way to take some of that pressure and some of that anxiety away, because you're not thinking how do I solve all the world's problems. You're thinking how do I teach my kids to be kind to their classmates?

Speaker 2: 44:06

Right, how do I show up the best I possibly can today for my child? Yes, exactly, and you know it's funny we're having this conversation because I've been having this realization about parenthood in general, outside of complex medical needs, parenthood and especially in that infancy stage. You really have to reset your mindset, or I do for sure I was telling my husband this last night have to reset my mind to be very present in the moment, very like, small minded in the best of ways. We're like I'm going to be present to my child when they need me. In the next five minutes I'm going to change a diaper, joyfully, I'm going to get her that 25th binky that she threw, you know, whatever, and like because I've noticed, when I take parenting from a big picture standpoint, like homeschool, and I think I'm going to help keep up with, you know, the brick and mortar school so that by next year she can get plugged right into first grade.

Speaker 2: 45:05

That is such an overwhelming goal I crush under the weight. I cannot even like I don't even open the school books that day, if that's the goal I have. But if I can break it down and be like we're going to make the ABCs super fun today, then it's like, yeah, yeah, we're going to make cookies spelling out Charlotte, that's actually, we did that this morning, it was fun and like so, yeah, just. And so then you take it to this complex, you know, care topic and it's all that much more relevant because when you try to think of anything bigger than what's right in front of you, it's so overwhelming, it's so crushing. So to even think like I want my child to be off TPN, I want my child to be off oxygen, whatever, those are really good goals, but if they feel overwhelming to you, then it needs to be smaller.

Speaker 2: 45:53

And the other thing I've thought of as we're talking about this is a lot of times, if you can focus your goals on things like about your child's quality of life or your quality of life with your child, that can be a great way of re shifting your focus, rather than it being like I want my kid to be able to run and play soccer and not even know that she had 17 surgeries and you know, whatever. That's such an overwhelming goal. But to be like, hmm, how do I refocus that to be quality of life? I want her to be able to to play with her kid, her siblings, today, joyfully I don't know I'm making this stuff up but like when you can focus on quality of life over the bigger vision for the projection of your child's life, that makes things a lot more attainable, which helps you hold on to hope. You are capable, you are equipped and you are not alone.

Speaker 1: 46:50

Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button.

Speaker 2: 46:59

We would also love to learn about your personal journey and how we can support you.

Speaker 1: 47:03

Reach out to us at contact at charlottehopefoundationorg.

Speaker 2: 47:08

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