In Part 2, Emily & Ashlyn examine the intricacies of Snyder's Hope Theory, revealing how it can ignite creativity and lead to innovative treatment options. We delve into the importance of seeking multiple medical opinions and building a robust support network, sharing stories that highlight the transformative journey from acceptance to active pursuit of the best care for our children.
Navigating the emotional landscape of parenting a child with special needs is akin to steering a ship through stormy seas—daunting yet possible with a steadfast mindset. This episode emphasizes the power of emotions in shaping our experiences and the value of a motivated mindset in fostering personal and creative solutions for our children. By adopting positive self-talk and reframing our narratives, we uncover strategies to combat feelings of inadequacy and reinforce our agency. Our dialogue doesn't shy away from the realistic aspects of hope, ensuring we view it as a strategy for better outcomes, not a magical cure.
In life's most tumultuous chapters, spirituality and faith often become the anchors that keep us grounded. We reflect on their indispensable role in providing solace and guidance, especially when faced with critical decisions regarding our children's well-being. You'll hear how faith can be a source of comfort, assuring us that we're part of a larger plan and never alone in our struggles. Remember, reaching out is a sign of strength, and Charlotte's Hope Foundation is here to extend a helping hand. By sharing our stories and connecting through this platform, we pave the way for hope and support to flourish in the lives of those who need it most.
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
In Part 2, Emily & Ashlyn examine the intricacies of Snyder's Hope Theory, revealing how it can ignite creativity and lead to innovative treatment options. We delve into the importance of seeking multiple medical opinions and building a robust support network, sharing stories that highlight the transformative journey from acceptance to active pursuit of the best care for our children.
Navigating the emotional landscape of parenting a child with special needs is akin to steering a ship through stormy seas—daunting yet possible with a steadfast mindset. This episode emphasizes the power of emotions in shaping our experiences and the value of a motivated mindset in fostering personal and creative solutions for our children. By adopting positive self-talk and reframing our narratives, we uncover strategies to combat feelings of inadequacy and reinforce our agency. Our dialogue doesn't shy away from the realistic aspects of hope, ensuring we view it as a strategy for better outcomes, not a magical cure.
In life's most tumultuous chapters, spirituality and faith often become the anchors that keep us grounded. We reflect on their indispensable role in providing solace and guidance, especially when faced with critical decisions regarding our children's well-being. You'll hear how faith can be a source of comfort, assuring us that we're part of a larger plan and never alone in our struggles. Remember, reaching out is a sign of strength, and Charlotte's Hope Foundation is here to extend a helping hand. By sharing our stories and connecting through this platform, we pave the way for hope and support to flourish in the lives of those who need it most.
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
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:we're so glad you found us, so together we can walk this journey in hope.
Speaker 3:I think that that's probably a good segue into pathways, right? Yeah, for sure, all right. So pathways are described as basically the different ways that you can go about achieving those goals. Right, and Emily, you talked about a lot of times that can be leaning on a support circle, leaning on other families around you.
Speaker 3:It could be working with doctors, it could be working with research experts, et cetera. It could be spending countless hours on Google researching all the random papers, random medical papers and then researching how to read the medical paper terms that you're trying to take in, which I did a lot of when I got on the path to looking into treatment in London for Emory, and the cool thing to me about pathways, or when you have hope, when you utilize this way of thinking, what they talk about is that people with high hope, we tend to be able to open ourselves up more creatively and be more open to additional options, and that's where things start to play into, leading to potentially better outcomes for our children. Right, because when we open ourselves up that there could be something outside of what's in front of me, there could be other solutions or other aids out there besides what this hospital can offer, what this doctor is able to do. But when we're shut down because we can't imagine things getting any better or worse than what they are right now, we stop searching. Right, and so I think I was saying earlier that, to me, hope is the key difference in shifting from settling to seeking. Yes, and that is where I really found Snyder's Hope Theory kicked into gear for me really started to make a big difference in our lives was not willing to settle, which is different than acceptance.
Speaker 3:I accept that Emory has bladder extra fee and that it is going to impact her health and her life her entire life but I did not have to. What I did not accept or was not willing to settle for was the current options that were presented to us in America at the time that didn't really have the best outcomes in terms of quality of life according to my plans for my daughter, right. So then I can. Then that point led me to start researching and seeking alternative opinions, alternative options, and it just happened to take us to another country, which is not the norm. Not encouraging everybody, not even encouraging you to go outside your network, necessarily, although I am a huge, huge, huge fan of second opinions. Emily likes to go all the way to seven opinions sometimes. I do. You will never hear us dis-getting another opinion.
Speaker 2:Nope, nope, because even if they all agree with each other, at least you've gotten confirmation and feel peace about the direction. And that's how it was with Charlotte. We got seven opinions about urology and basically all of them, in different ways, agreed with each other, and but that allowed me to move forward with the surgery and not be like, but is there something else? So I think we are kind of the queens of different pathways, which is no surprise then that we named our nonprofit, you know, after the hope theory, but I think another great thing to think about with this pathway part. So it's becoming really clear to me and I've presented about this Snyder's hope theory, and so have you, ashlyn, several times. And it's fun because, just like anything, the more you present it and teach it, the more you learn about it. Right, and I'm learning. It's really. At first I was very confused about this whole goal Pathway agency thing, but basically it's just like the goal is the starting point, the pathway is how are you going to get there? And the agency is what are you going to, what is your state of mind, to help you get there? And that's why it's transferable to business and to really any other goals you're trying to achieve, like I. As I was reading through it again today, refreshing my mind for this podcast, I was like, oh my gosh, this is so relevant for as we're building Charlotte's hope foundation and our goals for 2024. But in terms of pathways and support system, what I have found to be very helpful is often you have the pathways in front of you already. You have the medical professionals. You have family or friends or both. There's the Facebook groups of the world that are the diagnoses that you have, whatever it is, or the parent support groups that you have found that are relevant to your diagnoses. It's tapping into those networks and recognizing them, that they're there Right and, I think for me, a big turning point in my mindset and ability to hold on to hope.
Speaker 2:I distinctly remember it. It was one night Charlotte was probably a week old in the NICU. Daniel and I had been sent home because we were sick with fevers, so we obviously couldn't be in the NICU and we had just finished her very first surgery of many more to come and I was just feeling so defeated and hopeless. And then I remember looking around me and seeing stacks. It was right around Christmas and they were just stacks of gifts that had been given to us, things from Ronald McDonald House, where they give out amazing things quilts and stuffed animals, and all that stuff something that Santa had brought Charlotte in the NICU and gift cards family had sent us.
Speaker 2:And then I was on the phone with the night shift nurse and at first I'm lamenting. I want to be the one with my child at night. I'm almost angry at this nurse. And then when I hung up the phone I was like, wait a minute. She and I didn't have this word at the time, but she's a pathway Like. She is the support system that is there for my child when I can't be, and she is a fantastic resource that's helping us get through this situation. So when I was able to look around and be like, oh my gosh, I am supported by all these different avenues, I was able to actually sleep that night because I had some hope of like okay, we're not doing this alone. But no matter your situation, your family life, your friend network, whatever, I encourage you to look around because there's got to be somewhere that you do have a support system and the half the battle is recognizing it and then tapping into it. Right.
Speaker 3:It's being in a mindset to take action, to actually utilize those pathways that are in front of you. Like you said, to find it, to believe that it is worthwhile to share your story with total strangers and ask for help, Because that requires a lot of vulnerability too, being very open, and a lot of times I'd say a majority of the time probably you're asking total strangers, people you don't know anything about. But that's one of the unexpected, surprising gifts of being on this journey is the ability to connect with people at such a deep level, with literally no introduction other than we share this walk in life Right.
Speaker 2:Yeah, and it's impressive. I mean, it's just astounding, really, when people hear your story how much they're heartstrings are tugged and they want to support. And so, refer back to one of our earlier episodes was how to accept help, and I think Everyone should listen to that episode. It is so important. But, yes, this pathway is so important because it's basically okay, you've got the goals. How are you gonna achieve them?
Speaker 2:You know, like in my example of wanting to show up and be present for my daughter in the NICU, well, how am I gonna do it? Well, when I can't physically do it because I'm sick and I got sent home, that night shift nurse was a godsend, you know, like she was rocking my baby who was screaming bloody murder all night long, and at least she had that nurse. And then I Ended up at it. You know it felt uncomfortable because it felt like a stretch to ask my parents to do this, but I asked my mother-in-law and my mom to take turns, taking shifts, being with Charlotte until I could be with her again. And they did, and they they talked to this day about how much they loved that time with her because they got one-on-one time with her Until I was healthy enough to be back, and so you know, just like being willing to lean into your pathways, whoever that is, even if it's us leaning into, we're here to support you. Lean into us.
Speaker 3:Messages you know I think it's also being open that pathways that are available to you might be outside of what you would have expected to be your pathways almost every time, exactly, or not being afraid to you know. Just to stretch, I think, an example is when you're needing something to get done or you're needing information and the person who was assigned to you is not Making things happen like you know needs to happen. Then at that point you know maybe it's asking for a nurse manager to come in or a floor director or something like that, to come in.
Speaker 2:There are other, there are always pathways, but that requires that hopeful state of mind to think outside of the box, yeah, and and get to other ways of achieving the goal that you have for your child and even you know if a Lot of us, if we're tuning into this podcast, were exhausted, we're at the end of our rope, we're emotionally maxed, all those things and it's really hard to get creative about how to go about something when you're in that state of survival. And so, just remembering that you can go to the, the oh my gosh, I almost said social media lead, no, the social worker Lead, or the head nurse or whatever and you can just be like, look, I've got this problem. I have no idea how to what to do. I just know something needs done and I'm too tired to figure it out. So work your magic, tell me what to do, you know.
Speaker 3:Right, or you?
Speaker 1:could be a great option.
Speaker 3:Spiritual leaders in the hospital can be great to go to. There's. There are so many options and but, like Emily said, if you are in a position that you are struggling to find pathways for a certain situation, reach out to us. We're never going to tell you answers or what we think you should do, but we can certainly ask you questions that might make those pathways more apparent to you.
Speaker 2:Yeah, oh, oh, my gosh, a really good example.
Speaker 2:And of course I've mentioned this several times.
Speaker 2:But I have felt so hopeless About the lack of pathway towards true care coordination for Charlotte's care and and there's been times where it's been like where I'm on the kitchen floor and I can't even get up anymore because I'm so defeated about the lack of coordinated care for her.
Speaker 2:And Yet there's always, once I get out the emotional you know baggage of it, do my, do my thing, when I peel myself back up off that floor, there's always something else I can do, like, oh wait, I remember a social worker once saying that I could call her if I hit another barrier. I'm calling her. Or hey, wait a minute, I have this amazing neonatologist who knows a lot of different people in the medical industry and he could tell me what to do next. Or hey, I'm gonna call my mom, who's been in the throes of this from the beginning, and be like what am I missing here? You know, like there's just always one next thing you can do that can peel you up off that floor of hopelessness and keep you putting one foot in front of the other, because that's what the name of the game is one foot in front of the other.
Speaker 3:It is, and I think we talked about this a little bit earlier.
Speaker 3:I do want to point out that even when practicing Snyder's hope theory, it's okay to hit pause if you need to take a moment for grief, for sadness, for anger, whatever those feelings are those emotions.
Speaker 3:We're not saying that you have to, you know, put your head down and barrel through like you're, you know, on a line drive and football.
Speaker 3:You can take time. We don't want you to feel like this is a way of saying that you need to run past other emotions that are negative or sad, because when you lean into those as we've talked about with like guilt which a lot of times we say is, you know, kind of false thoughts that create a story for us, if you take time to sit with that, that feeling and explore where it's really coming from, then truthfully, that can actually lead you to creating, you know, new goals or help you establish, you know, new ways to achieve those goals that you have felt like were impossible to hit. So everything works together, but I mean just it's it really, at the end of the day, so much of this is learning to listen to your gut and being open to it and and what it's saying and trusting Yourself, and then being confident enough to move forward and you know what, I'll even Kind of build off of what you were saying about like letting your emotions be what they are.
Speaker 2:Those emotions can be the pathways to get to where you need to go, like when I've been so mad, like Livid, about the lack of care, coordinated care obviously I have to temper it when I reach out to people and not be crazy person, but like it's what drives me to solve the problem right.
Speaker 2:So sometimes letting yourself be really mad or Really sad or whatever it is, is exactly what you needed to help you break through the latest barrier and and just keep charging on, you know, and sometimes it's the fuel you need to be able to keep going. Because, I'll be honest, like this Example of a lack of coordinated care, if it didn't continually rear its ugly head every single week in our life on the reality of how it affects Charlotte, I would just ignore it, I would just let it go, because it is a massive uphill battle to fight. But when it keeps showing up every week and I you know that, like I've heard of the term Advocate, you know like that, that welling of like, but I'd still not solved Sometimes that's exactly what you need to be able to to make the pathway so lean about it.
Speaker 3:I love that. Break that one down and think about that some more, because it's so true. I mean, that's ultimately how we ended up creating this podcast and the foundation is because that's it's why you were so London right, yes, yes, exactly. I mean. Trust me, I would not have gone to London without a lot of emotion packed into it.
Speaker 2:Uh-huh, yeah, so you know, our emotion can be some of our greatest tools, if we let let it be.
Speaker 3:Yeah, and I think that's the key right is allowing space to acknowledge the emotion, but not letting ourselves be ruled by our emotions.
Speaker 2:Mm-hmm, exactly, exactly. So this leads us beautifully to mindset, or agency, however you want to term it, and Basically, I mean, I think we all know mindset is a massive aspect to life in general, but especially when we're talking about being hopeful, and so another way of thinking about this is like motivational mindset. Right, we talked about this a lot in business of like, if you really are going to be able to Grow a business, it comes down to a ton of mindset. Even in my homeschool groups that I've been joining to help a Like, 90% of the content is all about mindset for the mom and man, isn't it true? Just shape, shaping your mindset to be able to achieve those goals. So how would you describe agency, ashlyn?
Speaker 3:when I was watching some videos on it earlier.
Speaker 3:What I ended up summarizing from the two of them was Agency is really just, it's embracing the belief that you can actually create change and you can like these goals that you have are achievable.
Speaker 3:Yeah, and I think that's what you're describing with the mindset that's required, because if we Tell ourselves we have no influence, like I don't have the authority to change this, or I don't have the education to you know to be taken seriously and make things happen, or whatever you know story you might tell yourself for why you can't make this happen, then that that starts to create a low-hope mindset and that will shut you down Really quickly, whereas if you're a high-hope individual, which can take some work, we understand, you know, but really just well, if you believe that you're capable of changing something, then that's when you know things really start to take off for you. That's when change will start to happen. But you have to believe that you can actually make it happen and that means, you know, believing in yourself as an advocate and valuing your role as an advocate and then ultimately, really, really, really Leaning into the fact that nobody knows your child better than you, and that means everything.
Speaker 2:Oh my gosh, it's funny you said that as an example, because the first example I have written down of self-talk that we can have, that we have to reframe, is I have no idea what I'm doing. How many times do I tell myself that I have no idea what I'm doing and I mean, it's true, I really don't know what I'm doing, but then reframing that to be like, yeah, but I know somebody who does, I'm going to call them.
Speaker 2:Or well, I don't know anything about stoma care, but I do know that I want to make sure that my child is dry. So what are my resources to get there? Just changing your narrative or yourself, or recognizing your self-talk when you tell yourself you know, I'm not qualified to raise a child who is on oxygen, I don't know how to do that. Right, Nobody knows how to do that until they have a child who is on oxygen. So you know, just like helping. Yeah, exactly, I don't know how to raise a child who is on a feeding tube.
Speaker 2:Yeah, no one else did either, Like you know so reframing your mindset to be like I don't know, but I know how to find out, or I will learn. You said sometime in a previous podcast something brilliant, and I forget how you phrase it. It was so good, it was simply like the word.
Speaker 3:Yet I like to throw in when you switch that, when you make that one tiny tweak to a statement of like I don't know how to change a G tube, yeah, yes, or I don't know how I'm going to handle this yet, but like that yet implies that you believe that there is a future where you will be able to do that, yeah, and that, right, there is the game changer for shifting yourself to a hope mindset. That means opening yourself up to more opportunities to help achieve your goals for your child, and that is why Snyder's hope theory is linked to. You know, having an influence on a child's outcomes is because when we open ourselves up to more possibilities, right, then we're opening up our chances to give our child more of what they need. Now, this isn't going to apply all the time. I don't want anybody to think that we were saying that this theory means that your child is going to be healthier and be cured and everything is going to be hunky-dory.
Speaker 2:Correlation, not causation. People, Exactly yes, yes, yes, and it's always. You know, what we're always talking about is reframing our hope and our goals to be within the realistic limits of the diagnosis and the prognosis we're dealing with, right. So, knowing full well, holding on to hope is probably not going to heal your child, but it might allow them to be able to. You know, let's use the example of like you thought your child would never be able to walk, and when you're able to hold on to hope, over the course of many years and a lot of different efforts and a lot of different things, through goals, pathways, agency, maybe it allows your child to eventually be able to walk with a walker.
Speaker 2:You know, like I'm not saying that's going to happen, but what I'm saying is that's the difference is when you hold on to hope and you set your goals to be more realistic of like, well, they may not be able to walk, but I'm going to help them be mobile. So we're going to find a great wheelchair that they can manage themselves, or we're going to find an amazing what's it called when somebody no, what's the nurse aid that like comes to your house? We're going to find a great nurse aid that can come and help this child be mobile by getting them around the house with them. Whatever it is, you know it just like when you have this hopeful mindset, it helps you not just stop at the. They can't walk. That's not. That's not the end of the sentence. Right, Right.
Speaker 3:Yeah, I think one thing I kind of want to lean into here I think we should talk about Emily is at the stage of of employing agency or of requiring agency. Medical providers can have a really big influence on this part and that can be a great thing. But I think what's important to talk about what happens if you're getting pushback on your agency or some like you know, somebody like the doctor, the specialist, is making you, you know, feel like you don't have that agency to actually change things or question things Like how would, how would you go about recommending, like how, how do we handle that? How do we get past that?
Speaker 2:Yeah, I think it's really important to remember that's one opinion, one voice, and also not your child's parent, right? So there's countless examples, and in no way I mean every doctor and medical professional we've interacted with and it's been hundreds has wanted like, no one has intended to make you feel like your agent. You don't have any agency or any ability to you know, set your mindset to be able to reach these goals. But inadvertently it happens a lot, and so I think one thing I've had to remind myself a lot. So a very good example is Charlotte's chronic pain.
Speaker 2:Okay, how many doctors told me it might just be something she has to live with because we can't discover it? And I'll tell you, there's nothing more of a slap in the face to be told your kid's gonna be in pain for the rest of their life and there's nothing we can do about it. Well, that's not true. I shouldn't say there's nothing more. I'm sure a lot of you have heard other things that are a lot harder. I'm just saying like, when you're told like there's nothing we can do and basically stop barking up this tree because there's nothing here, it's really hard for you to not think I'm crazy, right, like that was the thought I kept having, like I'm crazy because I'm the one who keeps saying my child's not well, and I keep hearing from doctors well, we don't know why it's not us, it's not us whatever, it's not this specialty or whatever.
Speaker 2:And so, having to really my husband has been very helpful at this being like, okay, well, that was one doctor and he doesn't live with the pain every single day, so we need to go to a different doctor. You know, and like I tend to be the kind of person who I will just keep going to the same doctor over and over, determined to convince them that they need to do something different, to find something else. And my husband's like why are you doing that to yourself? Like, go to someone else. So I think a lot of times it's recognizing if somebody you are interacting with makes you feel like there's no more, you're at the end of your rope, then maybe you need to go find someone else. What's your take?
Speaker 3:So I was just trying to think about how I could apply this to the experience we've had, and probably the most recent example really is when I made the decision to take Emory to London to have the surgery. A lot of people thought I was crazy and at first our American urologist seemed really supportive. And then, emily, I remember I was with you when I got the call from him saying that he had reviewed her recent tests and discussed it with other top expert doctors in America and they were very cautionary about whether or not I should do it because she was so healthy right now. What if the surgery essentially messed her up? And in that moment I felt crushed. I felt like, yeah, who am I to be trying to make this decision for my daughter? I mean, if our doctors aren't saying she should go get the surgery, why am I saying she should get this? They're saying it's not necessary. What if I do mess her up? What if I do hurt her?
Speaker 3:But then, after I probably was rocked for what? A week or two on that one, that one really unnerved me because I mean we had flights booked, folks, I had all my Airbnb's that I didn't make it to booked for our sightseeing expeditions I thought we would be doing during recovery which we did not but realizing that it was okay to feel this need to go about my daughter's healthcare differently than what other people thought, that was our right as her parents and so I did have agency to make that choice and I stand by it that it was the right choice for us, for our family, for Emory. But it was a good example of just realizing that you can kind of be knocked off balance here or you can have the misperception that a doctor is the final statement or the final opinion on what happens, and I feel like we basically are on our way to a miracle for Emory because of what we did and no doctor here was going to make that happen.
Speaker 2:Yeah, yeah, that's a beautiful example, gosh. I mean we could go on for ages probably with examples of these. Like I remember, with this whole pain situation, we kept running into dead ends and basically told like we don't know what to do. And even if you go somewhere else, you're not gonna probably get answers. And if you go to a different hospital system it's just gonna make it all that much more complex, cause Charlotte has so many specialists involved. And if you involve another hospital system, well now we're not gonna be able to communicate very well.
Speaker 2:And I remember just being like I finally hit a wall and I was like y'all don't communicate that great, anyway, I'm out, which that sounds horrible. Anyway, and even to this day I hear so we're at three different hospital systems. Now Her care is very intentionally with specific specialists at three different hospital systems and I hear almost weekly man, this would be a lot easier if we were all in one system. And I just very confidently respond every time I have been under one system, I've been under three and I'll tell you it's really no different Because you get in these massive hospital systems and communication.
Speaker 2:I mean it's just humans, right? Human error is just the way it is. So, yeah, I think some of it is just gaining the confidence of going through this for a while and learning like, okay, a lot of people are gonna have their insight and their perspective from, like, more of the admin standpoint, or from an American urologist who's been trained by American urologists and that's great. Their insight is great, it's very valuable and it doesn't have to be the end of the road. I love that.
Speaker 3:I think at this point we have covered majority of Snyder's hope theory and given a lot of examples that hopefully make it more clear what we're talking about and help you start to think about how it applies to your situations, your life. So for a lot of people you may be ready to be done. You've listened to us. Thank you for hanging in there. But there is one other element I think it's really important to talk about, and so I just listeners. It's up to you if you want to stick around for this part or not. But really a big element as well, to hopeful thinking, to being a true problem solver, is leaning into your spirituality, is your faith.
Speaker 2:Oh yeah Is. I was almost gonna end this conversation and not bring that up. I'm so glad you did I know you are.
Speaker 3:No, it's okay, and that's why this part may not be for everybody, but I know it's been.
Speaker 2:It is a critical part for Inley and I personally, I think it's relevant to everyone, because everybody is spiritual, no matter whether you are atheist, buddhist, jewish, catholic, protestant, whatever.
Speaker 3:Good energy or crystals, or everybody's got a spiritual aspect. I think I mean, remind me, Inley, you've read this a little more thoroughly than I have, admittedly, but I mean, doesn't Snyder's Hope Theory actually talk about the importance of you know, of when a faith is leaned into, or spirituality, or leaning into a resource that is greater than yourself, right, yes, Something that is larger than you and any other human being that we can draw so much hope from that? And you know, I mean for me it really is, as this is going to be very simplified statement and it goes a lot deeper. Personally, but knowing that God loves my daughter even more than I do and, to top it off, he loves me even more than I can comprehend, Holding onto that helped me to maintain that hope all the time that it was okay to keep pushing that, those intense feelings that I was having, that don't stop here.
Speaker 3:Don't stop here to listen to that and lean into it as my faith, as God guiding me and helping me have the confidence to pack my family up and go across the country to somewhere I've never been, and I mean the statement that my daughter the first time, or well, second time, she met him for pre-op. But I mean, I literally had a man operate on my daughter who I had met on Zoom twice and in person one time, before he got her open for any very massive surgery. But I had total peace about it and that peace came from praying and a lot of conversations with God and, I'll be honest, my prayers sound like the conversation we're having right now. I talk to God like I would talk to a friend, my parent, and I feel like I practice learning to listen and sometimes I get it right and there's a lot of times he's probably like, nope, not what I meant, but we're gonna work with it anyway, Right.
Speaker 2:So true. No, I'm so, so glad you brought this up. Okay, I can't believe whoever's about to hit end record.
Speaker 3:I have to laugh because I thought, for sure, we were gonna get here a lot faster, but I'm glad that we're getting here.
Speaker 2:So, yes, so agency, even in the research. A big part of it is your belief system and it makes so much sense and nothing like having a child with complex medical needs will rock your belief system and make you question it and think about it and either you know and dive deep into it and really or run away from it or run away from it. Yes, it will make you wrestle with it. You can't ignore it anymore, and that's a good thing. Wrestling with spirituality is a very good thing. So any who agency when your belief system can be a huge element to helping you maintain hope. A really good example, like very big picture and this is even in the paper about Snyder's hope theory that I was reading that when parents, let's say, you're a Christian right and you are holding onto hope for your child and you're able to shift your mindset to recognizing that hope actually also may mean that if they die, life's not over and they're with Jesus, and that's a massive mindset when you're like, okay, so maybe that's not the worst thing. And I say that with the utmost love and tenderness and awareness that we have parents who are listening, who have really hard prognosis or have already buried their child, and our hearts are with you, and I remember when this reality hit home so hard, I was still pregnant and just knowing that if Charlotte lived, she was going to have a massive mountain of struggle ahead of her and coming to grips with the fact that her life is invaluable. And I believe in a God that has an amazing heaven and that he's going to take her home to Him if he so chooses. And that's not the end of her story.
Speaker 2:Of course I will be heartbroken, but she will be fine, and so that's why faith has such a massive aspect in this agency conversation, because it shapes your thinking and even like your example of you know, faith is what allowed you to go to London with peace. Faith is what caused me to decide to homeschool. Faith is what has allowed me to be okay with having more children and at peace about it. You know, faith is what has a gosh everything. It has influenced everything. So, regardless of your belief system, your belief system influences everything it does.
Speaker 3:And I would. The only thing I would add is that the added piece of faith and spirituality adds the factor of taking away the feeling of you're doing this alone. But it is all on you to make everything happen, which don't get me wrong. There's a lot of our situations where, yes, you're having to make all the hard literal decisions and you may not have somebody to discuss those with, and that is so incredibly hard and heavy. But when you have a faith that you can lean into, just that, knowing that, okay, no matter what we're going to get through this, I don't know what it's going to look like, but one way or another to you know the next day is going to be, the sun will rise.
Speaker 3:Yes, exactly.
Speaker 2:And I'm going to throw this out there If anybody's listening and is thinking man, I could really use some help with my faith. Or, man, I don't have a faith and I would love to have one. Or I don't know how to even begin to involve God in this whole situation. Email us. I mean, there's nothing I would feel so humbled if given the opportunity to walk with somebody in their questioning and wrestling with their faith. That's such a gift, such holy ground, and we want to be there for you, for all these practical things and for spiritual things. So please email us at contact at Charlotte's Hope Foundation. We can set up a call, whatever it takes, to help you with this aspect of really everything.
Speaker 3:But you know, according to the Hope Theory Agency, and if you are in hospital or going to be going in hospital. Almost every hospital, to my knowledge, has some type of you know whether it's a chaplain. Has you know? I need to learn more about what other people are called? No, I didn't think about that. I don't know either, but you know, like from other religions, or you know they have. They will have volunteers who are of faith that are available and want to be there with you and maybe that's an opportunity to have a conversation and you don't have to be a believer to have a conversation with them. No, I encourage you to have a conversation, especially if you're not a believer and know that it's not to pressure you into having a faith, but just talking about it out loud with somebody else who is safe and is going to care about you no matter what, regardless of your feelings and your viewpoints. Yeah, that's a great, great benefit to utilize.
Speaker 2:Yeah, agreed, amen. Oh, I'm so glad you brought that up. Well, folks, I think that's a wrap on Snyder's Hope Theory, like every other episode. We could go on and on and on, but I think, for your all's sake, so you can get on with your life, we're going to end it there and so we don't totally overwhelm you with too many examples and information. So bottom line is, if you are trying to look for ways to hold on to hope, remember it is a state of mind, it is a cognition, it's not just an emotion. And the three components or ways of holding on to hope is through your goals, through the pathways and agency or goals, support system and mindset. And we are here for you to help you with all three of those things. So please reach out to us, follow us on social, subscribe to this podcast, reach out to us at contact at Charlotte's Hope Foundation, and we cannot wait to hear from you. You are capable, you are equipped and you are not alone.
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Speaker 2:We would also love to learn about your personal journey and how we can support you.
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