What if you could navigate the emotional landscape of raising a medically complex child without being consumed by guilt? Join us as we journey through such a life, reflecting on our victories, challenges and the invaluable lessons we've learned along the way. We talk about maintaining confidence amidst adversity, finding the right feeding methods, preventing urinary tract infections, and dealing with hearing and vision issues - a testament to the resilience all parents must embody.
From managing ostomy bags to celebrating our children's milestones, we explore our lives with raw honesty. We shed light on the crucial role of medical professionals and the importance of their advice in our decision-making process. We reveal the strides being made by the Empowered by Hope Foundation, discussing the milestones and updates from our personal lives - always celebrating the power of hope and resilience.
We dive into a candid discussion about the role of guilt in our lives as parents of medically complex children. We share our coping mechanisms, how we let go of self-blame and how we let research guide our decisions. We emphasize the need to confront guilt constructively, maintaining perspective, setting an example for our children and building resilience. Join us on this journey, find hope in our shared experiences, and be reminded that you are capable, equipped, and not alone.
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
What if you could navigate the emotional landscape of raising a medically complex child without being consumed by guilt? Join us as we journey through such a life, reflecting on our victories, challenges and the invaluable lessons we've learned along the way. We talk about maintaining confidence amidst adversity, finding the right feeding methods, preventing urinary tract infections, and dealing with hearing and vision issues - a testament to the resilience all parents must embody.
From managing ostomy bags to celebrating our children's milestones, we explore our lives with raw honesty. We shed light on the crucial role of medical professionals and the importance of their advice in our decision-making process. We reveal the strides being made by the Empowered by Hope Foundation, discussing the milestones and updates from our personal lives - always celebrating the power of hope and resilience.
We dive into a candid discussion about the role of guilt in our lives as parents of medically complex children. We share our coping mechanisms, how we let go of self-blame and how we let research guide our decisions. We emphasize the need to confront guilt constructively, maintaining perspective, setting an example for our children and building resilience. Join us on this journey, find hope in our shared experiences, and be reminded that you are capable, equipped, and not alone.
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, we're so glad you found us Together. We can walk this journey in hope.
Speaker 2:Hello everyone, welcome to the Empowered by Hope podcast. You have your co-host, ashlyn Thompson, and Emily Whiting here today. As always, we are always so excited when it works out that we both get to host together, because the dynamic between the two of us is just so much fun and hopefully very insightful for all of you listening. And sometimes we have one of us in surgery with a kid or the other in surgery or in and out of appointments, so it's very fun when it works out that we have the both of us and today's episode we are actually going to go back and visit the very first episode that aired for the Empowered by Hope podcast and that was about how it is not your fault you are not the one who caused your child's medical complexities, medical trauma, medical challenges, your family's challenges as a result of that, etc. And it turns out that that episode and what, ashlyn? We're up to almost 30 now right, which is very exciting.
Speaker 2:I feel like we just launched this yesterday, but that episode remains to be the most listened to and over time still, it continues to be the one people go to, which what's really cool is we very intentionally I mean it's very intentional that that was our first episode. Right, ashlyn? We actually went to our board of directors. We're not for profit organization. We went to the board of Charlotte's Hope Foundation and we said, okay, we're launching this podcast, what should the first 10 topics be? And we actually have a maternal fetal medicine nurse on our board and she said it has to be about guilt. And I remember being like, oh my gosh, you're right, because when you first receive that diagnosis, your first thought is what did I do to cause this right?
Speaker 3:Absolutely.
Speaker 2:So today we're going to dive into that topic even more, because it remains one of the most, or the most popular topic of all that we've discussed, and I think it's because everybody battles it. And we're going to go a step further, not just at the time of diagnosis, which was that first episode, but now we're going to talk about, as you are going through, this life of medical treatment, medical trauma, medical challenges, the reoccurring what did you call it? Green-eyed monster of guilt. How do we address it? How do we not let it rule our lives, take us down to the dumps, et cetera, et cetera, because Asha and I have just a little bit of experience with this little guilt thing, right? So, before we dive into all that, you have lots to look forward to in this episode.
Speaker 2:I think, regardless of where you are in your medical journey, the beginning maybe you have adult children who have navigated life with medical challenges, or maybe you're in the throes of it, like we are with little kids. Whatever it is, I think this will be relevant to you because I almost guarantee everyone listening has gone through this guilt, and even if you are listening and you are a big supporter of what we're doing, with empowered by hope. But you yourself don't have a child with medical complexities. I think you'll relate, because parenting in general tends to have a lot of guilt attached to it, right oh?
Speaker 3:absolutely. And I also think it would be great that, if you're somebody listening to this, if you know anybody who's a nurse or a doctor, we love it when you share these episodes with them, because this just gives them insight that you just cannot have if you're not the one experiencing it. And I think sometimes understanding what's going on underneath the surface with parents when you're interacting with them can help a medical professional better reach them right in a good spot and figure out a plan together. Because, as we all know, as we talk about all the time, the more hope there is, the better the outcome. You know just the better chance you have at achieving that higher quality of life. And when you're down in the dumps kicking yourself, blaming yourself for every needle prick, every scream, every tear that falls on your child's face because of medical trauma, it can be pretty distracting from the hope you have to look forward to.
Speaker 2:Yes, exactly, I just had this vision of how amazing it and I've had several medical professionals do this and it's so healing when they look at you after whatever news has been delivered or whatever procedure has been done. That was hard and they say what are you really thinking right now? And if I have the courage at the time to really voice my thoughts, it's usually something about guilt of like oh you know, I'm, I brought her here and now she's, you know, going through this, or I'm the one who agreed to this intervention or whatever. And for them to look you in the eye and say this is not your fault and then walk you through the reasons why whatever just happened was necessary, or whatever just happened was the lowest risk for the highest benefit for your child or whatever.
Speaker 2:You know that whole constant discussion of risk versus benefit in the medical world. That's my everyday life risk versus benefit, right, but having somebody to just look you in the eye and help walk you through the reasons again to kind of calm that voice. So if you are a medical professional, I think you will glean a lot from this to just recognize some of the turmoil that's going on in those parents minds, because you're going to hear it from us, what goes through our minds, and I have a feeling many listening their thoughts echo ours. So and we can share a lot of the different thoughts that we've heard from our listeners and followers, that what they've expressed, that you know, might resound with those listening. So before we dive in, we have a few updates just going on in our personal lives and also with the foundation, which is very exciting, so we figured we'd keep you guys abreast. So, ashlyn, you said you had a story to share.
Speaker 3:I do so. Last night, as all, as most of you listeners know, if you've been following along Emery had her big surgery in April over in London, england, with the goal of first priority was to give her bladder and kidneys the greatest chance for optimal health as she grows. But the other main goal of that surgery was to give her a chance at achieving quote unquote natural continents someday in the future, and so that's something that we won't really know the outcome of until minimum. She's potty training age and she's just turned two, so we're kind of at the very beginning of that being a possibility. So anyway, emery has, you know, just like any other little kid, or at least most kids that I know, she loves her naked time. So she loves to. Both my kids, cole, who is six years old, and then Emery love for us to turn on different music videos and whatnot on YouTube and they dance, and so Emery loves to try to copy her brother's moves, which I really should share some of these videos with our listeners because they are just absolutely priceless.
Speaker 2:So I'm imagining she's like running around in a diaper. Is that what's happening? Just having great times.
Speaker 3:It would probably only share the ones with the diaper on, but there are a lot without diapers.
Speaker 3:But anyway she's got the perfect beach body. Let me put it that way she's adorable, so precious, but anyway. So last night she's dancing and then she comes over and stands next to Andy and I, my husband we were sitting on the couch and she's watching the TV, kind of bopping along to the song, you know. All of a sudden she goes oh, pee, pee, and I look at her and she like grabs her legs and I could tell she started going. But she, on her own, runs to the bathroom and she has a little potty in there. Now I don't know if she actually made it to the potty, but like she went in there and shut the door and she was either singing or talking to herself, I don't know. But then I heard the sink running. She loves to wash her hands, yes.
Speaker 3:So the point is that was really exciting for us is she obviously was aware of what her body was doing, and when she went I will say it was, you know, it was not a small amount, which is also a big deal, because her bladder before couldn't really hold much, it didn't really have capacity. So it just was. Andy and I were kind of like did that really just happen? It's amazing, right, it is. And so that's one of those moments that it is a win, no matter what, and that was an opportunity to just celebrate and be really happy, and just happy for her too, excited, like hey, that was a really cool moment and we obviously hope for a lot more of those. But you know, all that mattered was yesterday, and so that was really. Really. Who knew it would be so exciting to see your kid have an accident on the floor? Much better than like a puppy or anything.
Speaker 2:But she recognized it. She recognized it.
Speaker 3:Yes, so Molly wanted to share in that which was your dog.
Speaker 2:Yes, yes, just awesome, of course, yeah.
Speaker 3:But no, it was really great. So, anyway, I wanted to share that. But the other thing I told Emily that I wanted to share with you guys today is that and this is kind of building off of our last episode, which, if you haven't listened to it, it was awesome. It was the interview we did with mom Lori Zabo, who has six children. All of them are adults now. Two of them had major medical challenges throughout childhood and the one of them still continues to have them throughout her adult life. Amazing, amazing experience.
Speaker 3:But one of the things we talked about was how often when a parent who has a child with medical needs, we introduce ourselves or we tell the story, it's almost always about our child, right, it's almost. It's always related to something with the child. It's a we. It's never very much an I or myself. So we talked about challenging ourselves to remember that we too are individual people, and so one of the things I did last week was I signed up for this course. It's called Confidence and it's all about you guessed it building confidence. Shocker, right, but the form is the best.
Speaker 2:I think yes.
Speaker 3:It's actually a dance class, so there will be workshops, there will be journaling, there will be meditation, things like that, which I'm really into, those things, simply because I have ADHD. And let me tell you, a quiet mind is something I would pay a ton of money for, and so that is usually the closest I can get to one. But anyway, I'm just really excited because dance is something I did for years growing up.
Speaker 3:I wanted to go be a professional ballerina until I had to have made this I did right I wanted to be a professional ballerina but I ended up having to have major reconstruction on my right foot when I was 14. So my dream was crushed very early in life, but it's okay. But anyway, this is a great way that I get to go back to dancing and just having some fun in my life. Like literally. It's like 30 to 45 minutes a week. It's virtual. I've done it for one-on-one times with the coach. There's a forum, like you know, so group support and whatnot. But I just love that. It's the chance to not just work on quote-on-quote self-improvement, right, but intentionally putting some personal me time for fun in my weeks. And so I'll have to keep you guys posted on this and let you know how it goes. And the funny thing is the instructor's name is Ashlyn.
Speaker 1:I have never heard that. I've never heard that.
Speaker 3:No, I've met a few little kids over the last couple of years who have the name Ashlyn spelled the same way too. So that's so cool. More to come on that. Yes, I will not be sharing videos, most likely of my dancing, because I'm pretty rusty but we'll see.
Speaker 2:I think you should share a video of you dancing and your kids dancing side by side.
Speaker 3:That'd be.
Speaker 2:Okay, I think we could arrange that A fun challenge.
Speaker 3:Okay, all right, dance off. All right, what's going on?
Speaker 2:with you, Emily. Oh man, Now that you've said all those things, it made me. It brought a lot of things to mind. Where to begin? What's going on with me? Well, we also had major surgery. It was June 13. So at this point we're a month and a half out and I would say we are out of it now, Hallelujah, yes. Now. I mean out of it doesn't mean we're ever really out of it, but at least we're out of the post-op recovery. We're still doing the management and learning how to use ostomy bags, which is not going terribly great, which actually this morning I woke up having had a dream of a invention for an ostomy bag. That would be very helpful for us. So my next call seriously, after this episode, I'm going to hang up and call Coloplast, the company, and be like have you ever tried to create this and if not, how do we collaborate? Because I need it for my own daughter and I'm guessing others do too.
Speaker 3:Because my, my dog just dropped. I'm sorry really quick. If anybody else out there has dreams about medical inventions, please email us. I'm so curious, because what do you eat before you go to sleep to have a dream like that? Maybe it was the glass of wine before I fell asleep, I don't know.
Speaker 2:I like that better, I think because of Charlotte's cleft. Well, first off, when you're in the NICU, I remember sitting there and they were like I don't even. I can't even remember what all they were, but the one example comes to mind of different technology that I'm like duh, if we would just do this, it would be so helpful. So one of them was when you are nursing a baby who's having a hard time latching, you can use nipple shields to help them latch, or if you're having trouble, it's hurting or whatever, but anyway. So for the cleft, I was using one and they're clear and they fall on the ground and you can't find them and I'm like why aren't these orange? This is so stupid.
Speaker 3:It's a really great obvious point. The baby doesn't care what color it is but I do Make it something.
Speaker 2:There you go.
Speaker 3:I like the. Are there ones with colors now?
Speaker 2:No, I never called anybody about that. Because here's the thing when the problem is short term, I think of the idea but I don't act on it because I don't have time to deal with it. But when it's long term, we're going to be living with an ostomy for at least 10 years. I'm going to act on this because I need it. So that started the whole mother of invention thing. Necessity is the mother of invention.
Speaker 3:Right, Mother of invention. That's perfect. But we're going to open up another facet of Charlotte's Hope Foundation. It's going to be called Mother Invention.
Speaker 2:Oh, my gosh, I'm writing that down. I mean, I've always intended on us eventually having a product line for medical things that are like duh. Why wasn't this before?
Speaker 3:If you're out there and you want to work with us, just reach out Call hey, you know what I actually do?
Speaker 2:know somebody I should call who does these things, okay, anyway. So back to the point when Charlotte had her cleft, still before the correction, and then we were doing recovery Some surgeons, when they do cleft surgery, require you to not feed with a bottle for a month after, and that was our surgeon. Some surgeons let you, some don't. It depends and I don't know if it depends on the way they do the suturing or if it depends on their training, or both, probably both. Anyway. So that was definitely an invention moment, because it was like, well, if we can't do a bottle and my daughter will scream and not eat for a month with a syringe, which is what they sent us home feeding her with, it's like trying to feed a kitten with a syringe. Have you ever done that? It's impossible.
Speaker 3:I'm sure you're telling stories about how just disbared Charlotte was.
Speaker 2:It was hell on earth. It really was. So I ended up lining up all these different bottles, including ones I went to like animal. I have an agriculture background, so I went to these like TSC if you've ever heard of it tractor supply company, rural king, whatever these agriculture companies and finding all these little bottles and ways to feed animals that can't suck, because that's our situation, right, we can't feed her because she can't suck, or at least is not allowed to right now. So I got all these bottles and lined them up and tried to basically mismatch them to do what we needed to for Charlotte and get it to be something she would like, and we eventually did create one. So, anyway, I'm going to make an ostomy bag Determined.
Speaker 3:And this, ladies and gentlemen, is why every day, multiple times a day, I say in my prayers, in my gratitude practices thank you God for sending me Emily, because you are a genius. Oh my gosh.
Speaker 2:I think when your daughter is, you know not just her health but also her like. So today they want to play with water. Well, we can't play with water. We can, but we run a high risk of UTI, so we can't. In my mind, that means no, we're not going to do it, because that leads to three weeks of messing around with urine samples and then antibiotics that don't actually work, and then you have to do new antibiotics and then the cultures get lost at the labs, and then you have to do new cultures, and then we have issues with fungus, because all the bacteria was killed and the fungus takes over. And I mean clearly I've done this a few times, right?
Speaker 3:Right, so like no, and that's not even. You're not even talking about the fact like there's the pain and discomfort that comes from and the emotions that come from having UTI and the stomach issues that come from repeated antibiotics, all the things.
Speaker 2:And then the fact that some antibiotics play with her heart medication, so that rules out a bunch of different classifications. And then we have to talk to cardio if we have to switch her meds so we can do this antibiotic. It's ridiculous. So I'm like, no, we're not playing with water unless we can wear a bag, which we can wear a bag, but it's proving that the urine chips away at the seal and by the end of the day we have to take it off and it's supposed to last for three to five days, not 24 hours.
Speaker 2:So the problem is the way our and we knew this when we did the surgery that it might not be baggable, that basically the way the stoma is it's not like a true stoma and it's just really hard to fit to a typical bag. So, anyway, gonna be calling them. So that's one thing going on. The other thing and this just made me laugh and honestly that was my reaction. I laughed because we went to the doctor for a checkup on this ear infection that has been festering for months. But it's not your normal ear infection, it's not like oh, the eardrum is infected, it's something in the canal and at this point we'd had three pediatricians, two ENTs looking at it. We've had topical drops, creams, oral antibiotics and nothing has gotten rid of it. And the reason why it's a problem obviously is the discomfort, but more than that is she can't wear a hearing aid. It's in the ear that needs aided. So we're all like yelling as if we live with an 80 year old and repeating ourselves a million times. It's driving me crazy. It's not helping the fact that she's delayed in her speech with her cleft, and if you can't hear, that's not going to help with speech development, right? So all that to say we go to this appointment it was going to be with ENT and with ophthalmology to check on her eyes, because we also have this lazy eye situation. And so the ENT is like you know what? I think it might be actually the cyst that, like the ENT had done a surgery a few years ago to remove a couple tracks of cysts that were not supposed to be there. But she was like I think we might have missed one and there's another one in the ear canal that we have to get out. So we need to order a CT scan and then it's probably going to lead to surgery. So that's one appointment. And then we go to the next appointment and it's ophthalmology and they're like yeah, so the glasses haven't corrected the lazy eye, we're going to need to start patching two hours a day for six months to a year.
Speaker 2:And I text my husband and I'm like, okay, so now we need a CT scan, likely surgery and eye patches. And today was supposed to be like a softball, you know, just ENT and ophthalmology, no big deal. And he texts back and was like when are things going to get easy for Charlotte? And I could. Honestly, I was kind of proud of myself because I could honestly reply in a really good place and just be like it's not going to. I don't mean that doom and gloom, I don't mean that dark, it's just. This is life, this is going to be life with heart, a car syndrome, and I've gotten to the point where, like, I just expect, like if we leave an appointment without new news and next steps that we have to do that are kind of drastic, I'm really wondering what the heck went wrong, because I'm so used to appointments like these, so that's been happening.
Speaker 3:So another normal week in the Whiting household.
Speaker 2:Another normal week. But to your point about the dance lessons, I have been looking into trying to get the kids on horse lessons for for multiple reasons. First off, I love horses, but second off, it'd be great core therapy for Charlotte and a great activity Liam could love too and they could all do together. And third, I want to do horse lessons, so I'm trying to find a way that I can do lessons with them.
Speaker 3:So like a mom and me writing class.
Speaker 2:Well, selfishly, no, I want the instructor to take the other two and go do something and then a different instructor to do, because I'm actually really happy to hear that that's fantastic.
Speaker 3:By the way, I want to learn eventing.
Speaker 2:I want to jump.
Speaker 3:Oh, really Okay, that's awesome. I want to too, but I'm scared of it. So you know how that goes.
Speaker 2:I used to actually teach it, but that was in my previous life, that was like 15 years ago, so I need to relearn.
Speaker 3:So we've been talking about getting our families together, everybody for Labor Day weekend. Mind you, you all can tell how much. You know how close Emily and I are. Granted, we've still only seen each other a handful of times in our lives.
Speaker 1:Like three, I think, but we've never met each other's children yet.
Speaker 3:Four maybe. Yeah, we've never met each other's children in person, but we would both happily take a bus for each other's kids. Yes, our husbands. I'm sure we would wave our hands really dramatically to stop a bus, but just joking, we would do anything for each other. But we are talking about finally getting together and now I'm thinking maybe we should go somewhere where there's trail riding or something like that. Just something minimal like that could even be fun.
Speaker 2:Yeah, maybe I don't know, I don't know with a baby, let's think about that. Yeah, she is being practical. So, yeah, I'd rather just do horse lessons by myself, without the baby.
Speaker 3:But I like, I like trail riding. The guys can stay with it yeah exactly Okay.
Speaker 2:So content for today. Well, actually I do want to share a quick update on the foundation. There's so much more to share that's going on in our world and I'm sure in Ashland's too. But for now that's enough because we need to get into the content of what you're really here for. But for the foundation, really quick, I wanted to let everybody know.
Speaker 2:So we had a news feature on our local Ohio News Channel 5 in Cleveland and so it was like a two minute, you know, video feature on the channel five and it led to three different parents reaching out to us across the United States over the last few weeks who have Googled my daughter's diagnosis, which is called heart a car, and they came upon that feature story and they found Charlottes Hope Foundation, found empowered by hope, reached out to us, said how much it helped them and has led to fantastic conversations one on one with them and getting them connected with some resources. And you know that's just so exciting because we're doing what we set out to do Ashland and not just for heart a car patients absolutely not, but it's amazing. I mean that's only like 10 to 20 people in the whole world, so that's pretty small population, but the fact that what we're doing is starting to get out there, starting to get reached by the parents who are needing it most, and that they're reaching out to us to share how much it's impacting their lives and their children's lives, is just oh my gosh. It's such a wonderful treat to know that all the work that is going into this foundation and the podcast is, you know, exactly it's doing what we set out for it to do, so that happened.
Speaker 2:The other thing that's been happening is we actually Charlottes Hope Foundation and I'll have to share more details about this later because the oh well, actually, maybe this is still not public news. Okay, more to come. There is an award on the horizon for the foundation. Sorry, I just realized it's probably not public news yet, but yeah, we've gotten a really awesome recognition from an organization for the great work that's been doing going on here and the parents that have been impacted. And then the other thing Ashlyn, you want to share with them what we're planning for the spring.
Speaker 3:I do. We are planning our first major event, that we are still putting some details together, but basically the best way to summarize it for right now is we are going to be celebrating Charlottes Hope Foundation, really introducing it to the public right and just getting together with people from communities, getting together with other families and, just you know, I think I was saying the other day like I actually just want to celebrate the power of having hope, like the impact that that has had, because that's really what's brought us here and we've all started with our girls showing us what hope really looks like and how it can change our lives, and we are just so excited. But the really cool thing is that we were able to officially book our venue and it is fantastic, it is fun, it is cool, it is beautiful and we are just so excited to provide more details over the coming months. It's going to be in May next year. We'll give out more details, like I said, soon, but, granted, some of you might be thinking it is only July slash August of 2023 and you're talking about an event in May, so they're here to send in….
Speaker 3:If anybody has experienced planning events, they take quite a while to put together. So we're very proud of ourselves. We're actually probably on schedule and we have an amazing, amazing board member who actually plans events for a living Danielle and we are so blessed to have her leading the way on this and making sure that we steer the ship the right way to have a successful event. So, once again, just super excited. But we will take all the prayers and well wishes to make this event a huge success and we look forward to sharing more soon.
Speaker 2:Yes, we're very excited and, yeah, I can't wait to share more. It's going to be so much fun. And again, this was something that kind of came to me in a dream too. I woke up in the morning and I called you that day and I was like we need an event and we need an ASAP, so it's very exciting, okay. So back to the topic at hand. So, not your fault, gosh. Okay, I'm just going to start with an example story. It happened last week.
Speaker 2:So the whole ear situation with Charlotte. We need a CT scan to check what's going on in the ear. You get scheduled, we get there. You know I line up the babysitter for the other kids, we get to the hospital it's like 8am, sipping on my coffee, trying to explain to Charlotte what a CT scan is, when, honestly, I can't remember, amidst all the different tests, exactly what a CT scan is. And we go into the room and I had told her on repeat. You know you've had many or a couple CT scans in the past, but you've been asleep for them. But for this one you will be awake because you're old enough and you know how to lay still. So she was all proud of that. She's like okay, great, I can lay still. Well, we get there and you lay on this big table and it rolls you into this big donut looking white spaceship, basically that makes a lot of noise and she lays down and she gets moved in there and she starts crying, just that really weepy, heartbroken cry, and of course at the time she didn't have the words to verbalize it, but later she expressed that it was because she thought she was going to fall asleep and I'm with her and my heart is shattering because I'm like A I'm the one who brought her here, b, you know.
Speaker 2:Then my mind starts racing of did I do enough homework? Did I just take the ENT's word for it and hold on Charlotte one moment? Okay, guys, that was really cute. That was an interruption from Charlotte and the kids. They want to play with their water toys. And Charlotte came running in and was like Mom, I need a bag on because I want to play with water toys. So I will get her a bag as soon as we're done here, but anyway, okay.
Speaker 2:So the you know the thoughts going through my mind about the CT scan is like did I do enough homework? Is this radiation even worth it? What level of radiation is it? Should I have researched that more? And I had done a little bit of research. But I also knew like if we need a CT scan to get this thing out of her ear, then that's what we need. So I kind of had chalked it up and was like, well, don't stress yourself.
Speaker 2:But in the moment these thoughts are just crashing through my mind as she's weeping on this table right, and I should have gotten child life involved and you know, I should have probably prepared her more and had a doll with a CT little scanner to show her how to do it.
Speaker 2:And just all these thoughts of like it's my fault that this is happening, right, and we're five years into this, guys, so if you're listening to this and you're early in the journey and you're having these thoughts of it's my fault that my child is going through XYZ, just know you're not alone. And even five years into it, I still have these thoughts very frequently. But the hope is the light at the end of the tunnel is you get faster and faster at learning how to navigate those nagging feelings of guilt and address them head on. Look at them in their ugly face and either say you know what, yep, I need to learn from that for next time, or? Nope, that's actually not true. So we're not going to let that drag me down any longer. So I just thought that was a good introduction story to what we're talking about here, because it's very real and it happened last week.
Speaker 3:Oh gosh, it's a perfect example, and there are no shortage of examples of things that you can find to put your guilt hat on on this life I have found, and you know we were talking earlier. You know we said that first episode was really it was more heavily focused on that sense of guilt or that idea that it's somehow your fault that your child is facing this diagnosis, this, these challenges, and you know how overwhelming that is. But you said like you told me, you said, and that is a part of the experience or part of the journey that you will dip into often, often on, it comes in, it goes and it just depends on where you are in the journey and maybe you have long spells between moments like that, maybe you don't, I know. For me, the the biggest standouts for me are to start with Emery's very first surgery she had when she was seven weeks old, and that's the one where, if you've heard the story it required her to be in or the way that our hospital did the surgery.
Speaker 3:They put the children in an external fixator around their pelvis, so her pelvis was broken on both sides and pulled together to close the abdomen. So she had this, like you know, those connector sets that you can play with as kids. That's literally what hers. I mean, that's what it looks like coming out of her hips and then joining together over top of her belly, and then her legs were both casted in purple glittery casts, and then on top of that there was a bar between the cast and a rope hanging off of this bar. Yes, I'm still continuing just talking about her legs. And then there was a small two pound weight that hung off of that rope to keep her legs down.
Speaker 2:What, and so yeah, I don't know if you've ever described that in that much detail to me. Oh, my gosh.
Speaker 3:It was. I mean, it just didn't even look real, to be honest. I mean I still remember the first time I saw it and just being like there's nothing that could have prepared me for this seeing this?
Speaker 2:No, it just feels so inhumane, doesn't it?
Speaker 3:It truly does. And there are other hospitals or other doctors who do a different technique where they it's called a spica cast, I believe, which is where they put a cast all the way up around the waist and all the way down the legs, but those children can actually start being held like a few days after surgery, but in a lot of times they go home with that. There are also hospitals that do the same type of surgery Emery had with the external fixator. I don't remember if they do the leg cast as well, but they actually send those kids home after like a week and let them finish their recovery at home. Well, that absolutely terrified me, because everything I just described is only about her pelvis, has nothing to do with the fact that her entire lower abdomen has been completely reconstructed.
Speaker 2:Her entire urinary system is brand new, not to mention all the pain meds you're managing, and all of that Right.
Speaker 3:And but what they told me at that one hospital that sends them home is they're like, by the time they go home, most of these kids are only on like higher level or higher dosage ibuprofen. They do great and I just could not fathom that. But anyway, so I see this in. A lot of you already know that Emery had, unfortunately, some really difficult unforeseen challenges after her surgery and I just remember thinking I chose the wrong thing for her. I made the wrong choice, thinking that this was the right technique. And we chose that technique based off of you know, you talk about risk right, it appeared to be the lowest risk. It also was close to our home and our support system.
Speaker 3:I remember thinking the original hospital that we planned to take her to those children. They keep their children in traction for six to eight weeks. So I remember thinking, okay, well, four weeks seem so much shorter, so it's going to be much better than that. But I, just when I could not pick up my child who was screaming and sobbing and only thing she wanted to do was be held, I just remember thinking this is literally all my fault. I'm the one who chose this for her and she is going through absolute hell over and over again because of what I chose and I'm my agreeance of yep and yes is not agreeing with that thought.
Speaker 2:I'm agreeing that those are the thoughts we have right, right, exactly.
Speaker 3:I even went so far as to blame myself as so, like I alluded to those complications she had when she was seven weeks old had a lot to do with the fact that newborns, you know if you don't know, I'm not going to say this completely right medically, but I'll give you the gist so the whole breathing reflex, you know, is something that continues to develop, to develop as their newborns, so they don't automatically just breathe no matter what when there's a lot going on. So if a newborn is in a ton of pain, they will not always continue to breathe correctly, right. Or if they're on a ton of pain medication which makes them super tired, they will not continue to breathe correctly.
Speaker 3:Exactly so. Our hospital was originally recommending Emory have the surgery at either 12 weeks, like sometime between 12 and 16 weeks. Well, my research had shown that. Granted, there's not a ton of evidence, but there was at least some for this that stated that bladders that were placed back in the body within that six to eight week bark were showing more promising signs of better growth development long term than those placed afterwards. And it wasn't a guarantee, but that's what circumstantial evidence was showing.
Speaker 2:So I insist you with thinking you were the one right.
Speaker 3:Exactly Then, as my husband reminded me, and multiple other people said they're like our surgeons would have turned us down and said, no, we will not perform the surgery on her at this age, if they two agreed that it was too great a risk, yep, and so having people like that step back and say that to you is important.
Speaker 3:But what I want to put out there whether you're somebody who is making yourself feel guilty or you are a support system to somebody, there's also a time and a place to hear that message, and you have to be willing to and I'm looking back, thinking about how I handle this I feel like you have to be in a place where you're ready to receive that message and you're ready to step out of the ring of beating yourself up, and that is not always an easy thing to do. It can't like that. I don't want to say I don't know if martyrs the right word. It's not intentional, but it's like. Sometimes I feel like I've gotten stuck in that it's all my fault. It's all my fault and I don't want to hear anything besides that.
Speaker 2:Yeah, of course, if you're dealt with, that you can get out of that. Well, I know and I'd love to talk to a therapist about this, but I think that the reason we can get stuck there is because it's often when we're in a space where we have zero control to make it any better, and the only form of control we have is the control to blame ourselves.
Speaker 3:True.
Speaker 2:So I think it's kind of like a deep like when you're pregnant and there's nothing you can do about the fact that you got the diagnosis. You can't Eat different. That's gonna change it. You can't sleep on a different side. You can't nothing. Nothing's gonna change it. You can't try to sniff the right paint, like it doesn't matter what you do. The diagnosis is what it is. So what do?
Speaker 3:you have control over. Sorry, I feel the need to interject. Please don't anybody ever try to sniff any paint to change your child's health or for any reason at all.
Speaker 2:actually, so this is why we have insurance If we say something that gets misconstrued?
Speaker 2:Oh my gosh. No, but seriously, you know, I think we have this tendency to need to do something about what's going on, and if we can't do something, then the next thing we do is blame ourselves. And you know, I could be totally wrong. If a therapist is listening to this and is like, oh girl, let me talk to you about the neurological situation that you're actually explaining. But from the lived experience of it, that's what it tends to be Like.
Speaker 2:When we weren't able to back to the whole cleft bottle feeding situation that was I equate it very much to what you were talking about of like picking the right surgeon in the right place to do it. I could have picked from probably five different hospital systems around me, which is amazing that I live in a space that has that many different options. That would have done post-op recovery different and would have allowed us to have a bottle. And so then the heavy weight of oh my gosh. I chose this place to have a surgery where I knew I wasn't gonna be able to give her a bottle, and you know, hindsight's always 20-20. I could beat myself up about the fact that we never practiced with a syringe and we never taught her how to do that. And now we had to take a binky. And now she's upset about that and I'm such a horrible mom. How did I not think about these things? And then the guilt of like, well, maybe I should just give her a bottle, see what happens. But then, oh my gosh, what? If something happens to her, it'll be my fault because I'm the one who gave her the bottle the surgeon told me not to. You know the rat race of thoughts. So how to get out of it? That's a good question. Well, I have three thoughts for you. First off, I think it goes back to what Lori told us in our last episode. It's that you can only do what you. You can only do the best you can do right, and all of us are doing the best we can do.
Speaker 2:Another mom once I heard her say to her older teens who were griping about how they parent, how she parented the younger siblings different than them when they were younger, and she said you know what? I made the best decisions I could at the time with the knowledge that I had. I have different knowledge now. Yes, I'm making different decisions and we have to hold on to that. You made the best decision you could with the knowledge you had about where you were gonna go for surgery. You didn't have the knowledge that you do now about what that would actually look like, especially for Emery's case. You know, like you don't know how it's actually gonna play out for your child versus anybody else's. I did not know the impact of switching from a bottle to a syringe and that's I mean. You know you have to like really just look the guilt in the eye and be like, okay, maybe I could have made a different decision, but I decided this based on the knowledge I had at the time and that was the best I could do at the time, just like we, and I elaborate on this in the book. Actually, I think there's even a call out where I talk about this specifically.
Speaker 2:Regarding an amniocentesis we did, which is when, while you're pregnant, they use a needle to go through the abdominal wall into the uterus to remove some amniotic fluid. Thank you To run genetic tests, and at the time we had weighed the risk versus benefit and decided it's worth it because if it gives us insight to help her live after she's born, then great. But it came with a risk of miscarriage low but risk and we obviously didn't miscarry because she's still here. But I remember the three days after that procedure, me just being a total wreck of like, oh my gosh, if we lose this baby, I am going to feel so guilty because I chose to do this amniocentesis. But I had to come back to the and I even say this in the book I had to come back to the fact that, with the knowledge I had at the time, it was the decision I knew to make. Now, in hindsight I even elaborate this in very great detail about in hindsight I would never do it in our specific situation, because I know that the genetic test actually did not give us anything that was helpful, but I didn't know that at the time. So it's like you can't beat yourself up for what you know now because you didn't know it then. So point number one, I think, is you have to come back to the fact that we make the best decision with the information we have at the time.
Speaker 2:The other thing, I think is we can let guilt and I'm pretty sure we elaborated on this a lot in episode one but we tend to want to let guilt just be this undercurrent that we never actually acknowledge because it's ugly. We don't want to look it in the eyes, but when we have these thoughts, these subliminal thoughts, I think it's very important to stop and be like, okay, I'm feeling guilty. What exactly am I feeling guilty about? Let's put words to it. Let's like if I even have to write it out, I feel guilty because I chose this surgery, which caused this. Or I feel guilty because my daughter's panicking that she's gonna fall asleep, and I know that's due to a heck of a lot of previous trauma and I didn't prepper for this better.
Speaker 2:Whatever, the guilt is looking it in the eye and being able, because then you can either say you know what, actually, yeah, that's something I need to learn from. Or you can look at it and be like, no, actually that's not something that I'm gonna let. That's not true, whatever the case may be. So, like the whole, I didn't prep Charlotte enough for the CT scan to look at it in the eye and be like, okay, well, now I know next time I better prepper better. Oh, I see Miss Emery has joined us.
Speaker 2:Or if you look the guilt in the eye and it's actually not true, whatever that example is like, I'm the one that's guilty that caused my daughter to have these medical traumas in the hospital. No, you're not. Your daughter has these anomalies and you chose medical care for her and that comes with trauma, but it's. I mean, what else were your choices right? So just looking that guilt right in the eye? Sometimes you even have to write it down, tell it to somebody, something that helps it become concrete, and not just this subliminal flow of guilt that doesn't have a name right? It's when we let it just keep festering without really looking at it that it can get really ugly.
Speaker 3:Oh, I always, I say all the time that the most dangerous thoughts are the ones that stay in your head. Yeah, because they just get louder and scarier and they just overwhelm you. What I'm getting from all those three points that you shared which are great, is one of the ways to maybe take your power back right Is you can either like guilt bury you or you can let your guilt guide you. We have to give ourselves the grace to let those guilty feelings maybe what we can get out of them. It doesn't have to be negative, maybe it's just a way to teach ourselves. And, yes, they are hard lessons but, like you said, for my circumstances I maybe I could have done things differently, maybe not, but did I learn from it Absolutely? Was I more prepared for the next time she had surgery, you bet? Was I having different conversations than I did the first time? A hundred percent? And that made me feel more confident going into the next surgery.
Speaker 3:And were there a lot of new things I felt guilty about? Of course, of course I did, but I'm being a few months out now like they're all things that I've learned from and the other thing too, I think sometimes can be. It's really hard to think about this in the moment when you're going through it, but it's something like that I've been working on in therapy. Is that you know? I also really want to set an example for not just Emory but both of my children on how to handle hard things and challenges, and those are going to be a part of life, no matter what and if I beat myself up about everything that happens. Oh yes, emory is here visiting. Oh, coco apparently is home and maybe has an earache.
Speaker 2:Is that right?
Speaker 3:Yes.
Speaker 1:And she's currently brushing.
Speaker 3:Emory. She says hi, but she's currently brushing. She's going back and forth between brushing her toes and brushing her teeth with a toothbrush, so we might talk about that later. Yeah, that's a. It's quite the multi-tool. Anyway, going back to what I was saying, I think it's just also thinking about how do I want my children to handle feelings of guilt when they get older, right?
Speaker 2:I'll jump in. Ashen just muted herself to get through Miss Emory and her antics, which is so stinking sweet. We love it when we have visitors. You know, when we first started out recording these episodes, we would try to edit these pieces out, but at this point I'm like, meh, leave them in. This is reality, this is the life we're living, and I wouldn't want it any other way. And if I was a listener, this would help reassure me that these ladies are grounded in reality. Right, so it's all good. So, miss Emory, you just brush those toes, do whatever you've got to do.
Speaker 2:Girl, I think you know this guilt can be pretty. I'm not sure how far I want to go with this, but this guilt can be pretty surface level, like the guilt of oh, I'm the one that brought Charlotte in and now she's really upset because she thinks she's going to fall asleep. That's, I mean, that's hard, but it's not like the worst guilt I've ever had. Or it can be really deep. It can be like so I'm just going to be really honest with you guys, one that I have struggled with and I elaborate about this in the book she Is Charlotte quite a bit as well, which, if you're interested in reading. It's on Amazon, just look up, she Is Charlotte, by Emily Whiting and you'll find it. You can also find it on our website, charlotte'shopefoundationorg.
Speaker 3:But one thing Emily, I think I'll link that in the show notes too, excellent.
Speaker 2:One thing that I have really struggled with is the guilt that I knew my child would be born with a lot of complexities and, if she survived, her life would be full of pain. I knew that and in the world we live today, I had the option to terminate and we didn't choose that. And knowing that we didn't choose that, then it's easy for me to slip into the guilt of oh my gosh, I have caused this pain and this is deep, and this can go a lot of different moral ways and we can talk about all kinds of different things. But just sticking to the topic of guilt, I think the most healthy thing for me has been to not let that thought fester but to just voice it. Like my husband, I talk about it very upfront, just have a discussion and be like yeah, but let's come back to the fact that we didn't know what the future was going to hold and we aren't the ones that are gonna decide whether she lives or dies and who's to say what quality of life is, and we just come back to all of those things and have to remind ourselves the truths of what caused us to make that decision right. And so, no matter where you stand on the issue, no matter your previous decisions or whether you've decided similar to us or different.
Speaker 2:That's not the point here.
Speaker 2:The point is I'm just trying to be really real with you, with the darkness of how this guilt can be and how dark it can be, and it can lead you down some really hard roads in your mind, and the best thing I can say is to look it in the eye.
Speaker 2:Don't let it live in the shadows of your life, but call it out for what it is. Discuss it with a trusted friend, with a spouse, whoever you need to discuss it with to be able to either, like you said how did you say that Let guilt bear you or let guilt guide you. That guide for us has been reminding us. No, we chose to give her life and look at what amazing life has come from it and that's a beautiful thing, and so we're gonna hold to that and that's okay, and it's not my fault that she's alive Like that's a good thing, that's a beautiful thing. So, again, this is not a pedestal for talking about this issue from a political standpoint or a moral standpoint. It's just trying to be really real with you about the reality of how deep this guilt can get and how hard it is to navigate if you let it fester.
Speaker 3:Wow, I think it's really amazing that you shared that, emily, because going that deep shows you just how much these bouts, these battles with guilt, can really impact your life, your quality of life, how you parent, how you are as a spouse, how you are just in your everyday life. Because if we carry these all around, oh my gosh, it gets so heavy and, let's face it, life is heavy enough. There's going to be enough real things in life that we can feel kind of guilty about. But one of the things I wanted to bring up and this is changing gears just a little bit, but this is actually something my husband brought up to me when I was struggling with trying to jump into the guilt pool once again a couple of weeks ago, when I was questioning or starting to go down that path of oh my gosh, what if this surgery that we chose in London, what if it doesn't work out? What if we don't get the results that we're hoping to get? Because Emery had her first post-op ultrasound, which it was three months out, and for it did show just a little bit of hydronephrosis to the left kidney and what that means is basically a little bit of reflux. So the kidney was slightly swollen in comparison to the right one. But also it was the first time that she's ever had any of this show up on a scan, which is unheard of for her condition, truthfully. So we've been insanely lucky. So I have to remember to keep perspective.
Speaker 3:But the first thing I attached myself to was picking up guilt and covering myself in it, because our daughter's kidneys looked absolutely perfect before this surgery. We chose to have this surgery at a much younger age than America does any of their surgeries. And what if I screwed her up? I'm just gonna be really, you know, black is right here like super simple. That was my thought. Was oh my gosh, what if I screwed her up and ruined her future and I've put her health at risk and I'm gonna have to answer to her someday? I say really calm about this, obviously Very practical like most of us.
Speaker 3:Right, yep, I have a nickname in my family which is known I've been known as the cliff diver my whole life and I'm pretty I say pretty true to that name, anyway. So I'm talking to my husband about this and he's listening and he's going okay, I hear what you're saying and he's like but it's not a but he's like. Just one thing you're not really taking into account is you didn't do the surgery. You have to leave room for the surgeons who actually performed the surgery themselves. It's on them. You and I were responsible up to the point. We handed her over.
Speaker 3:Yeah, after that, we can't really take that guilt on or that fear ourselves. I mean, we literally had he's like we weren't gonna do the surgery. Right, absolutely. He's like. You know we have to share that burden and that's what this experience requires us to do. So to sit here and beat yourself up for all the what ifs and maybe these go wrong, he's like. Obviously I'm hoping they don't. And I think we still have tons of reasons to be positive, because both of our doctors our American doctor and our London doctor we're still very, very happy with what her results looked like. We're very, very encouraged, and that's what I need to hold on to. But I think that's where that trauma brain that I talk about a lot comes into play, that it jumps out and throws the caution flag and says, oh gosh, something bad is coming or you know. You better start beating yourself up now, because you're ready.
Speaker 2:It's your fault. Yeah, exactly, we had first off. I just wanna celebrate that news. That's fantastic. Not the hedging of phosas part, but that your surgeons are really encouraged. That's amazing, it's huge?
Speaker 3:Yes, it is, but the reason I wanted to point that topic out is because and this is you know I actually almost feel a little bit of shame and then guilt, for a different reason, that my first reaction to that Good girl call it out so that shame can go away. Let's hear it. My first reaction to that was not positive.
Speaker 3:My first reaction to it was that's not good or that's not good enough. And then, after I had that feeling, my second thought was how ungrateful am I? Oh my gosh, where is my perspective? I know good and well what Charlotte is going through, what you all are dealing with, and I am upset about something that is technically really good. But just because there's a hint of something that we were hoping wouldn't be there, I've decided it's all bad, I can't do that. So talking it out loud, you know, was really good. Talking with Andy about remembering that I did not actually perform the surgery itself and that we made the decision like I think it was the second point you said. We made the decision based off of all the information we had at the time and that's what we had to move forward with.
Speaker 2:Exactly exactly, and I'm so proud of you that on Airwaves, with how I don't know how many people listening, you just confessed to your guilt and shame. That's amazing. And now it has no space, it can go away in the Airwaves Bubbly shame. But also I think that brings up a good point, and this is probably content for an entirely different episode the comparison game. Right, we can play that game all day long and never win the. Well, my kid doesn't have it as rough as somebody else, or I don't have it as rough as this other parent, so I should be able to handle it better, or I have it worse than them. So what's their deal? Whatever that comparison game is, it is so unhealthy, but it is reality. It's something we all deal with.
Speaker 2:I mean, I know, ashlyn, when you and I set out to start this foundation, I was plagued with this thought that who am I to run a foundation when my kid doesn't have? You know, she's not in a wheelchair, she's not oxygen dependent, she's not medical equipment dependent, she doesn't have developmental disabilities, and I know a lot of our listeners are gonna have that. So how can I possibly lead an organization when my kid doesn't have it that rough? I remember that plaguing me. You know it still plagues me sometimes or even like who am I to discuss things about a terminal illness when my daughter is living?
Speaker 2:And I know that there are people listening who have a child with a terminal illness or have already lost that child and that haunts me, but at the end of the day, much like guilt, we have to call it out and just be like okay, yeah, so that's good to know. We have differences Moving on, you know, not letting it plague you or drag you down, and I think that's half the battle of a lot of our thoughts. It's just calling it out and looking at it in the eye and being like all right, so what are we gonna do with that? Like you said, letting guilt bury you or letting it guide you. I thought that was brilliant, oh, thanks.
Speaker 3:Gail, that might be the title of the podcast?
Speaker 2:I don't know. We're gonna figure that out.
Speaker 3:I think that could definitely work and actually what you just said. You let me know if you feel differently, but I almost think that this might be an appropriate wrap up for this topic, because we could obviously talk about this for hours. There's no shortage of examples. But when you were saying that, I was reminded of the episode we did on the introduction to advocacy and how we kind of came around to almost like, I think, defining advocacy really as that courage to follow where love guides you for your child.
Speaker 3:So, maybe we take a step back and we look at guilt and we just think that guilt isn't there to punish us. It's an indication of our love for our child. We only want the best for our children, right? We want to protect them from everything emotional harm, physical harm, mental, all of the things, right? But that's not reality. Even if our children were completely healthy, had zero medical complexities, they are going to have struggles that we cannot shield them from and truthfully, that's a disservice to try to shield them from that, because the world's not going to treat them that way.
Speaker 3:Nobody gets out unscathed to some degree, and I don't mean that in a negative way. That's just part of how we learn right. That's part of how we grow and expand. But I'm sitting here just thinking about all the things that we've talked about today and I think it was great. Those three points you made. I'm really holding on to the whole. The best you can do is the best you can do, like Lori's shared with us, because that's it. That's really all we're capable of and that's all we want our children to think they're capable of, right? I mean we don't want our children to grow up and be advocates for themself and then think that if everything goes smoothly, that they've done a terrible job.
Speaker 3:Right or, if everything goes bad, that it was all their fault because it wasn't Right, exactly no, I think the second thing you said is we can only make the decision with the information we have at the time and that's all we can really judge ourselves by. Hindsight's always going to be 2020. So, to look back in shame, I think it's going to be Ashland. That I was two years ago, but from the perspective of the Ashlyn, who has two more years experience, well, that's not very kind to myself and also it's completely pointless, and you'd never do it to somebody else.
Speaker 2:Why is it? No you're so hard on ourselves and we look at others and we're like, oh well, obviously she didn't know that then, so it's fine, you know what that?
Speaker 3:about. I'm gonna challenge all of us and I think we should put this out there a litmus test for Guilt. Okay, if you. So when you start, you know Emily you talked about the third point was to you know, write out Literally what you're feeling guilty about, or say out loud to somebody what you're feeling guilty about, so you can really look at it, you know, face it and and try to apply logic to those feelings and really determine is this practice, this logical or not? And what if you look at that, that statement of I feel guilty about XYZ and look at that and decide, okay, so, like in my example, I could look at it and say you know I'm feeling guilty about this, but if Emily said this to me, what I think she should feel guilty or what I tell, her she's done a great job or that she's done her very best, and that's literally all that matters for our children.
Speaker 3:So if you would tell somebody else, they should feel guilty. Okay, you know, I could maybe entertain that a little bit.
Speaker 2:But if you would tell a friend or even a stranger that that's not something that they deserve to guilt themselves over, that's your answer for your own guilt and even if the answer is oh yeah, that that probably is guilt inducing or that, you know, you probably should feel guilty about that, which is gonna be very rare, right, because we're all doing the best we can for our kids. But when the answer is yes, well then let's look at it as okay. What do we learn for future? You know, how do we just use that to? Okay, now we know we, you know, now I know I'm not gonna do XYZ again. How are we gonna apply that for future? So we're not here again because I think you're right kind of like anxiety.
Speaker 2:I think guilt can be a very good guide if we let it, if we don't let it faster. But we look at it and we learn from it and we're like, oh yeah, good point. I mean, we have all these emotions for a very good reason. We are, you know, animals, we have nature and it. It's meant to help us learn and and do things better or different, for Self-protection or whatever you know.
Speaker 2:And if we can actually acknowledge it and let it be the tool that it's meant to be, then it can be really useful and not totally bury us, like you said, and I think I need to apply a lot of these things to my life, but truly I think if we we can let guilt totally bury us in this life, because Parenting in general can be very guilt inducing, and then you layer on top of it all of these medical decisions and it will bury you alive if you let it. So I'm really hoping that this podcast can provide the tools to at least get you started To face those fears, to know you're making the best decision you can with the information you have at the time, to know that you are doing the best you can do at the moment, that you're doing it Right, that you can let guilt either bury you or let it guide you, and to voice those thoughts. You know whether, what. If you don't want anybody else to hear it, that's totally fine. Write it in a journal between you and yourself you know if you want to play about us
Speaker 2:about it. Email us. We would gladly tell you that you are not guilty, yes, and be very genuine about it. Yeah, so I think that you know, if this episode has, you know, even helped you a little bit in navigating that pool that can just make you drown in guilt, then we have done our job and we are so grateful that you have trusted us to walk on this journey with us To, you know, be the best we can be for our children, because we know that when we step up and we are the best advocates for our kids, then our kids thrive the best they can, with all that hope that we bring to the table.
Speaker 3:So yes, I want to. I'm gonna throw out there one less thing. If you are listening to this and at the end of this episode there is still a thought that you are wrestling with that you feel guilty about, seriously, please do reach out to us. You can reach out. You could private message us through Instagram or Facebook or send us an email at contact at charlotte's hope foundation. Calm or sorry, yepcom, yep, our org.
Speaker 1:You got org Thought that sounded funny.
Speaker 3:But reach out to us and and we would genuinely love to respond to you in a thoughtful way and help you work through it. We're not going to answer anything for you, we're not gonna tell you what you should or shouldn't do, but sometimes having an outside person help you see how that guilt can guide you, can be really valuable, and and that's a skill that you'll learn over time in this journey it's just, it's one of those things that you've got to build on, and Every one of us are capable of doing that, and that's what's so great about doing these things together is Emily is really great at showing me what I can learn and helping me see the positives, and and I certainly try to do the same for Emily oh, and you rock it and I think that's one good point that you know, like you said, we're never gonna give you the direction or the answer or tell you this is what you should do, this is what you should think.
Speaker 2:But we will ask the questions to get your brain going, to help you steer maybe in a more healthy direction or Just think about things a little differently than what your brain has allowed you to think about it. And I think that's the value here is we're not, you know, our big insurance policy statement. I mean we're not here to give medical advice ever. What we are here to do is support you and to love you through it and to help you hold on to that hope that we know is so important for you and your child and your family. So we feel very honored and humbled that you trust us with that. I also want to give a quick shout out to someone who actually happens to be a board member and my brother. He has a business called cash flow podcasting and it is because of his business that we are even doing this. He's amazing, I mean. I think we would have found a way to do this, but it's so much better doing it with cash flow podcasting.
Speaker 3:Oh my gosh, they are, yes, they are fantastic, and we also can give a shout out specifically to Anne and Brett, who are on his team, who Thank you both for the editing and the posting and all of the amazing helpful Things that you guys do and at the last minute very often, because I am not the best person at getting things done ahead of time.
Speaker 2:So it's funny, you are wonderful. Yeah, we set this vision of like we're gonna have a month of content Pre-recorded. We have yet to have more than a week recorded at a time.
Speaker 3:I think we had a bank of like two once two or three maybe so, but you know what.
Speaker 2:They are a fantastic team. If you're ever looking to launch a podcast, they're the ones to go to cash flow podcastingcom. But we just wanted to make sure we made a shout out because it's just amazing to have been the the founder and I don't know what his technical title is, but basically the one who started and runs cash flow podcasting on our board and really helping to Develop our approach for empowered by hope podcast and helping us with the foundation is just an incredible gift and we are so grateful to him and his team, breton and and all the others who are probably behind the scenes that we don't see. That helped make this look like we know what we're doing.
Speaker 3:Yes, thank you.
Speaker 2:Ben, yeah, I always say, like you know, we know the medical side and we know how to talk. We don't know how to actually administer a podcast. So this is fantastic.
Speaker 3:No, so we can hit play pause and then send yes, yes we appreciate you all and we will see you next week.
Speaker 2:All right, bye everyone.
Speaker 1:You are capable, you are equipped and you are not alone. 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. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at Charlotte's hope foundation org. And, last but not least, if you know of someone who could benefit from this podcast, please share. We hope it bears.