Navigating the unpredictable journey of parenting a child with medical challenges can feel like sailing in uncharted waters. But imagine finding a constellation of hope that guides you through the darkest nights. That's the essence of our latest conversation, where we share intimate experiences of hospital holidays, the strength it takes to smile in the face of adversity, and the infectious joy of celebrating every small victory. Our stories, including sweet Christmas anecdotes, will warm your heart and remind us all of the resilience that defines families like ours.
The festive season often paints pictures of joy and togetherness, but for many of us, it comes with its own set of challenges. In the tender retelling of Emily's daughter Charlotte's NICU journey during Christmas, we uncover the serene moments amidst the chaos, allowing for a deep reflection on what truly matters. We also extend our narrative to celebrate the excitement and hope of the New Year, even as we deal with unforeseen health scares and the constant adaptation required to keep our little ones safe and happy. These stories aren't just ours; they resonate with anyone whose love for their child is the beacon that shines through the toughest storms.
This episode doesn't just recount past experiences; it's a clarion call to join hands as we forge a supportive community for parents on similar paths. We're catapulting into 2024 with an open invitation for you to help shape our new program—created to honor milestones, foster connections, and be a non-judgmental space where laughter, tears, and encouragement flow freely. We're more than just voices in your ear; we're fellow travelers on this profound journey, and together, we're building a lighthouse to guide us all to shore. Join us, share your story, and be part of a community where every parent is equipped, capable, and never 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
Navigating the unpredictable journey of parenting a child with medical challenges can feel like sailing in uncharted waters. But imagine finding a constellation of hope that guides you through the darkest nights. That's the essence of our latest conversation, where we share intimate experiences of hospital holidays, the strength it takes to smile in the face of adversity, and the infectious joy of celebrating every small victory. Our stories, including sweet Christmas anecdotes, will warm your heart and remind us all of the resilience that defines families like ours.
The festive season often paints pictures of joy and togetherness, but for many of us, it comes with its own set of challenges. In the tender retelling of Emily's daughter Charlotte's NICU journey during Christmas, we uncover the serene moments amidst the chaos, allowing for a deep reflection on what truly matters. We also extend our narrative to celebrate the excitement and hope of the New Year, even as we deal with unforeseen health scares and the constant adaptation required to keep our little ones safe and happy. These stories aren't just ours; they resonate with anyone whose love for their child is the beacon that shines through the toughest storms.
This episode doesn't just recount past experiences; it's a clarion call to join hands as we forge a supportive community for parents on similar paths. We're catapulting into 2024 with an open invitation for you to help shape our new program—created to honor milestones, foster connections, and be a non-judgmental space where laughter, tears, and encouragement flow freely. We're more than just voices in your ear; we're fellow travelers on this profound journey, and together, we're building a lighthouse to guide us all to shore. Join us, share your story, and be part of a community where every parent is equipped, capable, and never 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 and welcome to the Empowered by Hope podcast.
Speaker 2:It's your hosts, ashlyn Thompson and Emily Whiting, and I have to say it is very, very nice to actually be together, emily, for the podcast and not only talking about strategy, which has been a lot of fun and very exciting, but I miss just downloading with you and catching up and diving into topics that relate with all you incredible families that we are really doing this for to connect with. We miss you and we're really excited to get on this plan that we have been crafting away and God has been leading us with a lot of enthusiasm and twists and turns, and it is a ride that we are thrilled to be on. But tell you what we want to start this episode out, knowing that this is going to be airing the first week of January. First and foremost, giving a specific call out message spotlight to any family who either you're finding yourself in the hospital right now or perhaps you've recently found out that your child who is due to arrive in 2024, the circumstances aren't what you were expecting.
Speaker 2:The year does not have that same. What do you call it? Resolution?
Speaker 1:list those things that I never do.
Speaker 2:It's looking a little different, right? Yes, I'm more of a pick a word person that I usually forget by month three, but I'm actually going to invite Emily in here to talk some about this, because I know you spent your first Thanksgiving and first Christmas and first New Year's as a parent right All in the hospital with Ms Charlotte. So, while my heart is 100% with you, I can't think of anybody better than Emily to share some words with you all, to give you some hope, which might be a word you recoil at a little bit in this moment. But, once again that's why we're always going to be here is that gentle reminder that hope comes in a lot of different forms than you would expect.
Speaker 3:So, emily, yeah, yeah, when we were getting ready to hit record, we were just talking about what all do we want to talk about in this episode and we really want to share with you all the strategy we have been working on for the last several months, for 2024 and beyond, of how we really are excited to fulfill the mission we set out to do to be there for parents who have children with complex medical needs, who are in the throes of it, and especially those at the very beginning of the journey. Of course, throughout the journey, we want to be there for you. But as we were talking about that and we were excited to share that vision, we said you know, but we want to hit pause and just acknowledge those who are really in the throes of this right now, even if you're not in the hospital, but you are, you know, living day by day, wondering if you're going to be hospitalized or dealing with. I mean, gosh, how many holidays have I dealt with not being able to access the right doctors to get the help that we need? So we land in the ER because, you know, a lot of doctors are taking off for the holidays and the holidays are just really hard when you have a child with really complex needs. Honestly, this is the first holiday we've had in six years where we haven't. Of course, I realize we're only what two days post Christmas, as we're recording this, so there's no guarantee that in the next week we won't land in the ER, but this is the first holiday we haven't either been hospitalized through the holiday or landed in the ER as a result of the holiday. So my heart is with all of you who find yourself in this position, who find yourself living day by day, wondering what the very day in front of you, let alone the very next day, is going to hold.
Speaker 3:I remember that first year in the NICU, charlotte was really holding onto her life day by day. We didn't know what the future held. She had, you know, a surgery almost every two weeks and gosh, I remember it was Daniel and I my husband were just talking last night about how crazy it was that before Christmas. So she was born November 28th before Christmas. It was like every single day there was so much action with her care, so many things happening, like from the beginning of the day to the end of the day your head was just spinning trying to keep up with all the different medical plans and we're going to do this and we're going to the OR for this and we're going to go take this test and this lab work and blah, blah, blah. And then Christmas hits and it's like, unless the child is literally about to die, everything just stops and it's maintenance mode. And it was really hard for us to adjust to that because the first month of our parenthood was just like, okay, what's next? What's next, what's next? It's been five minutes since we got a new plan. What's happening now, you know? And then Christmas hit and it was like, beat and grow, beat and grow, that's what we're doing and hope nothing tragic or, you know, dramatic happens.
Speaker 3:So anyway, I just I remember those first, those weeks of the holidays, being in the hospital, ashlyn, and you get stripped of. You know a lot of times we talk about like trying to remember the real meaning of Christmas and trying to focus on that and not get stressed by the chaos. But when you're out in the real world and you're in the hustle and shuffle, it's really hard to slow down and really like it's very hard to slow down and really dwell on the meaning of it all. But when you're in the hospital you're forced to and in the moment I don't think I recognized it as the beautiful opportunity that it was. But now, six years later, I look back and of course I'm not saying that it was easy by any means. But I remember just sitting there rocking Charlotte, and it was quiet. You know, santa came in to visit once or twice, whatever little things happened, but not a whole lot and it was the most reflective time. Like that was the time I probably really understood the meaning of Christmas more than ever before, and it got me thinking too. I remember even writing about this on my caring bridge, which is how I share with our friends and family what's going on with Charlotte's care? It got me thinking about how, you know, for Christmas now we have all the trimmings and the decorations and the yummy food and all our families in town and it's all wonderful and there's nothing wrong with all that. That's all really good.
Speaker 3:And when you're hospitalized or you're surviving literally minute by minute with your child, you come to realize the first Christmas was not any. It was so far from perfect, right, like I bet Mary was. Like what are we doing in this barn, you know? Or the bottom floor of this house where the animals are kept and you know, just nothing was the way you would want it to be as a first time bomb, right?
Speaker 3:I mean, I'm not going to go into words in Mary's mouth because I don't know, but I just I just felt so close to her because it was like you just have to come to grips with the reality that is in front of you and just hold on to the fact that you know what is the hope of that day Like. For me, the hope of that day was Charlotte was stable and I got to sit and hold her. And that's monumental sometimes when you have a child with complex needs, because sometimes you don't get to hold them, sometimes you can't feed them, sometimes you can't clothe them, sometimes you can't even be with them, you know. So I just remember it being so reflective and far from easy. I'm not trying to brush it off in any way, but I also just want to shed some light on just just because it doesn't look the way we wanted it to doesn't mean that it doesn't have the opportunity to be beautiful.
Speaker 2:That's wonderfully said, emily. I was just thinking as you were talking about that some of you if you've listened to earlier episodes we had a therapist come on Chelsea Castle and we talked about trauma and stress and ways to cope, and the holidays really are a triggering time for a lot of people. But of course, we're focusing on these scenarios, which I would venture to say are as intense as any can really be, and but this is a great time to take a few minutes, whether it's to hand write or text some notes in your phone, or maybe you're a talk to text person, whatever you need to do and any thought that is in your head, just get it out of that space, because it can turn into a really booming voice that robs you of any chance of seeing any beauty around you. And what I would like to point out or not point out, we all know this, but the holidays often remind us of all the things that we wish was happening with our child. Right, we're surrounded by it in terms of commercials, social media posts, our friends, our family, everybody experiencing those things that we want to have.
Speaker 2:But when those moments occur and you can hear my little angel in the back yelling for a mom. She really wants mommy right now, every minute of the day, regardless of it being Christmas. But this child that you are going through whatever circumstances and I realize it could be really awful sometimes just taking it everything away and looking at it as simply as you prayed for this child, you longed for this child. You have this child to love and, no, you did not want all these other circumstances and we are praying for you and we want things to get drastically better for you regardless, but it doesn't change that you have this child that you are madly in love with and that gift right there. If we focus on that, it can sustain you. I'm not saying it's going to make everything okay, but sometimes just focus on that incredible love that you have for this child and I promise I know without knowing your circumstances your child has that same love for you and this is a time to really just. Maybe that's the one gift you can hold on to right now.
Speaker 3:Yeah, I jeez. If there's any dry eyes listening to this podcast, I'd be shocked at this point Wiping tears away here. I think that's a wonderful way to focus on the hope that's at hand. There's so many times I remember in those really rocky first few months with Charlotte, where I just had to keep clinging to. Charlotte is a beautiful, wonderfully made, fearfully made gift and I have been given the amazing opportunity to be her mother and I feel so far from fit to fit that role, to be at that role. But God chose me anyway and he gifted me to her, her to me, and he trusted me with her and he also sustained her long enough that I got to experience being her mother and that, even though came with an outrageous amount of struggle and heartbreak, was the greatest gift I could have asked for. Right, like I think about Mary, like was it easy to get pregnant outside of being married? Way back then, I would say that's a hard no.
Speaker 2:Not like. That was the fast way.
Speaker 3:Yeah, I would say it was not like today's culture where that was like you know, okay, and you know all the things that she faced. There was nothing easy about it, and yet Jesus. I mean, can you imagine any greater gift than getting to carry Jesus and then be the mom of him? And yet it came with a crazy amount of suffering. So, yeah, if you are just suffering immensely right now, just know that that suffering is not lost, it's not for naught. You're not the only one. You're not alone, though it can feel very lonely. And if there's only one thing you can hold onto right now that helps you get through it all, it is I think Ashlyn nailed it. It is just holding onto the gift that is your child and knowing that the love you have for them is so immense.
Speaker 2:Yep, there's nothing like that type of love, that experience of truly knowing firsthand what unconditional love actually feels like and yes, I'm supposed to be that way with my spouse and I believe I've gotten a lot better at that, but it's harder though. It takes more effort, not going to lie Effort well put in, but that gift of just no matter how brief it is or how long it is, getting to experience what unconditional love feels like is. I can't imagine a greater gift that I've had in life. Yeah, isn't that?
Speaker 3:true, and you know-. Oh, sorry, I cut you off, I got excited.
Speaker 2:I know you're good.
Speaker 3:I remember coming back to this thought a lot through the pregnancy and the first few months and still to this day, sometimes, when I'm really feeling like you know, how are we going to get through this? Coming back to the thought that I love this child more than I could possibly even put into words, and God loves this child even more than that and he loves you even more than that. Yeah, and so that small taste of unconditional love that you have, you know, gives you a glimpse into the love that he has for you and how unconditional it is right. Like you wouldn't care what your kid does with their life, you still would love them unconditionally. You don't care what their physical or mental or developmental anomalies are, you still love them unconditionally, and God's the same with you. And if you're pregnant right now and expecting a child, knowing that they have, you know, challenges ahead of them, physically, mentally I just want to speak this truth to you too, that you can do this and while you might not feel that well, I don't know I don't want to put words in your mouth.
Speaker 3:Sometimes it's hard for a mom who's pregnant to really feel that deep bond. Yet I know I really I did, but I didn't. You almost have to like see touch hold that baby before you got that really deep bond right. I don't know I could go both ways with that because I've had a miscarriage too and the loss was so profound. So either way, the point is you can do this and you know how. I know you can do it Because I know you were made to love that baby unconditionally, and if you don't feel like you already do, you will. I love that.
Speaker 2:Okay, because we want to have some dry eye moments. I would like to. Well, first off, if anybody is out there who would like somebody to talk to, or if you need to get some of those thoughts out of your head and you're having a hard time just writing them with seemingly no real intention of doing it, no intention of doing anything with them, feel free to send us an email. If you want a response, we will gladly respond. If you don't want us to respond, put that in the message and just know that we will read it with care and appreciation and we will be lifting you and your family up in prayers. Our contact information is always in the show notes.
Speaker 2:But okay, so we've settled that as much as we can. But I want to move on too. You know you touched on it earlier that this is the first Christmas that you've had in ultimately six years. That has been relatively calm, and I share that with you. It's been five years for me that this is the first Christmas that there hasn't been something truthfully somewhat tragic going on around the holidays.
Speaker 3:No, that's not somewhat very tragic.
Speaker 2:Okay, yes, I've yeah, Like I jokingly call my life the last five years a series of necessary unfortunately unfortunately there's a word necessary unfortunate events, because I know they've all been needed for one reason or another and I've been threading it all together as this slow motion miracle that's been occurring, but it's been dang hard in the holidays. It just does not feel good when they're not fun, when they feel heavy. So it was very, very nice, yet a little unsettling, to to not feel that weight, but I chose to lean into that. I had to be intentional about my thoughts of seeing this as a good thing, because my, my thoughts, my experiences wanted to tell me this is abnormal, and abnormal can sometimes feel scary or wrong, Whereas I just realized I need to retrain myself to accept that calm and typical child chaos is a good thing. I'll be at.
Speaker 2:The noise about killed me with all the screaming. I struggle with noise a lot, which is funny. But we had a beautiful Christmas and I just want to share this one little story about Emery. So she is two and a half now and she gets to go to my grandmother's house a lot, who I call Nani, and Nani is, oh my gosh, she is such a southern belle and she's beautiful and she's amazing and just full of joy and light and but she loves makeup and all things very feminine. Well, Emery has taken on that love and loves to do makeovers and you can imagine what she can do with a stick of lipstick. You know it's very impressive.
Speaker 3:So anyway she's. Can you put that on her?
Speaker 2:social, please. Yes, we can, I will have, I will share some of those. But she, for Christmas, wanted a makeup table and chair. Okay, are you kidding me? You're two and a half, yes. And so my Nani found her this amazing set. It's thankfully, it's all made of wood and it's all you know. It's just copies of it. None of it is real makeup. Thank you, jesus. Right, I mean that wholeheartedly, but it's got like fake hair tools. It has fake makeup sets and stuff and that girl has been in heaven playing with that nonstop and it is the cutest thing.
Speaker 2:And so when we left my mom's, we of course had way too many presents, because you know, the grandparents and the aunts and uncles never quite get the memo that we don't really need much at all. And so we decided at the time Emery was okay, was leaving her makeup set at Mimsy's house which Mimsy is my mom because then she could play with it when she's over there. Well, yesterday morning she apparently regretted that decision, because one moment we're sitting there playing foosball, we have just like a little like table set, foosball table and out of nowhere she stands up and literally screams at the top of her lungs oh my gosh, I forgot my makeup at Mimsy's. I want my makeup here. That's a very clear sentence. Oh, you're not kidding. She sounded like such a 15 year old girl. Oh my gosh.
Speaker 2:I was in stitches, I was laughing so hard. But one of the gifts, though, that in that moment, I'm grateful that I have is that I could stop and take a quick second, not dwell on it, but take a quick second and just thank God that this little girl is still here and I get to experience these hilarious moments. It don't take it for granted. It wasn't just a funny moment. It was a gift to have that moment that just cracked me up, and she provides a lot of those. You know what's crazy?
Speaker 3:I still have not met Emery, I know. We'll have to we will be changing that in 2024. Yes, oh, she sounds like an absolute hoot, her and Eden. So my youngest Eden, is there one month apart, and they are just I, oh my gosh, they're going to be besties, I just know it.
Speaker 2:They sound like they are just two peas in a pod, I believe, so I know it's going to be a lot of fun and a lot of prayers for safety when those two are together, right.
Speaker 3:It's like if you and I had met at younger ages, probably would have needed a lot of prayers for safety.
Speaker 2:Anyway, moving on, any standout moments for you guys for Christmas this year. Oh geez, I'm trying to think.
Speaker 3:Charlotte was really into the concept of Santa Claus. Charlotte was really into the concept of Santa this year, which was really cute. She was really excited. She kept oh my gosh, she kept going on and on. Like once that girl latches onto an idea, she does not stop when did she get?
Speaker 3:that. Oh, I wonder, hmm, think about that for two seconds. Her mother. So anyway, she lashed onto this idea that she wanted to see Santa and seeing him at dad's work party was not sufficient. She wanted to see Santa at her house, because all the story books say that the little kids wake up in the middle of the night and find Santa. And I was like crap, those books are really not helping me, like you know, the whole night before Christmas and all that stuff.
Speaker 3:So she was all the way to the Christmas party on Christmas Eve going on and on about how she's telling her brother we're going to get up 20 times and look for Santa, then we'll go to sleep.
Speaker 3:And then next thing, I know we're going to get up 50 times and look for Santa. We're going to get up five times and she doesn't quite get the concept of what numbers bigger and then. And so I let this go on for probably 20 minutes on the drive and then I finally turned around and I was like, just to be clear, santa does not come if you are awake, so you may check out the window once and then you must go to sleep. And she was like nice days, mom. She, she's like thinking about that and she goes OK once we're going to look at once and then. But then that night she ended up being in a lot of pain but she always is after holidays because she overeats and she eats things that are harder for her digestive system and but thankfully we I'm getting really smart and I took all the pain meds with us and we were able to get it under control within about 30 minutes.
Speaker 2:But oh, she ended up.
Speaker 3:One of the pain meds, unfortunately, is what's it called makes her sleepy. What's that called? Anyway, I don't know. Whatever it makes her sleepy, so she can't stay awake. So my heart kind of broke for her because we got her home, we got a ton of pain, we finally got the pain under control and then she fell asleep and she didn't even get to look out once.
Speaker 3:But, she woke up and was so excited that morning, so it was all good and I was just grateful. Like I said, most holidays we would have landed in the ER for that, but luckily we have been through it enough that we have an entire pharmacy at our house and a 10s unit and all kinds of things, and we knew like the step by step process to get it under control. So, yeah, and today we are going to be practicing actually, as soon as we're done recording here, we're going to be practicing with a new ostomy system, which I'm excited about. She is not, and I don't blame her, because every time we try a new ostomy system she's like but it hurts when you take it off because they fail more often than not, which is why we continue to try new ones. And then we have to get them off and they're very sticky, and sticky stuff on little kids skin is not fun.
Speaker 3:But we got to keep trying because we need her to be able to have some independence and be able to handle her own ostomy. You know Working on that today, and then we're gearing up for the cath lab in two weeks. So never a dull moment. But it has been nice that you know we had a plan in place. We were able to get through the holidays and you know we'll gear back up doing medical things in the new year. For now it's maintenance.
Speaker 3:Well, we'll take, we'll count every win, no matter the size or the reason a win, right, exactly, it's a really big win to not land in the ER, honestly, so it's all good.
Speaker 2:Yes, it is so 2024. Hello and welcome let's do this.
Speaker 3:I'm getting so excited. Okay, I think this story helps us get in the mindset of what it is we're setting out to do in 2024. And it also just helps reframe why we started out to do this in the first place, right, Ashlyn? So right before we jumped on this podcast, we said a quick prayer and in that prayer we prayed for a baby named Joseph, who was just born on Christmas day, and I don't know him or his family personally, but he was referred to us from a friend asking for us to pray for him, because when he was born I believe unexpectedly, although I'm not sure he started having seizures and yesterday had one that almost took his life. And so, without giving any more details about the family or anything, when we said that prayer we both got super teary eyed right before we hit record, and it was just first off.
Speaker 3:We are praying so fervently for you, Joseph, for your parents, for all those involved. We pray that the doctors and the nurses are the hands and feet of God, that you can find peace in the midst of all this turmoil and that Joseph experiences radical healing and that God's will is done. And secondly, the story really refocused us on. This is what we set out to do. These are the people we set out to be here for the mom and dad who are thrust into this life, and we want to be there for them in that moment. So that sets up 2024 pretty well. I'll pass this to you, Ashlyn. Yes, it definitely does.
Speaker 2:Yes. So back to Joseph really quickly. If you're hearing this, no doubt that he'll still be needing prayers. So, however you pray, whatever your goodwill thoughts that you could send their way, we know they would be appreciated. And that's what's so special about having a community and connecting with others who, while we may not know, be able to relate to the exact circumstances. Right, we all share that journey of walking the pain that comes along with your child hurting or being in danger, and that's enough to make this a family, yep.
Speaker 3:Where all that?
Speaker 2:connected, whether we know each other or not.
Speaker 3:And we always say one of the differentiating factors or really off differentiating factor about Charlotte's Hope Foundation is we're not diagnosis specific or prognosis specific. And that's very intentional because, like Ashlyn said, when you've gone through the emotional turmoil of having your child receive a diagnosis or be unwell and still not have a diagnosis, either way we're all in the same family, whether we want it to be or not. It's the club no one wanted to be a part of. But now that you're in, we're happy to be there for you.
Speaker 2:Yes, exactly what is it we say in the beginning? We're sorry that you need us, but we're so glad you found us. Amen, all right. So on another note, though that is exciting for January, we wanted to give you guys a little behind the scenes look of what we are going to be hyper focusing on what we've been drumming up in the background here for a while, and that is going 100% on preparing for our celebration of hope that is taking place May 4th in Worcester, ohio, and we are just so excited. And if you can hear children screaming in the background, I promise they are not slowly dying. They are giving their dad a run for his money on. Who can avoid getting dressed the longest is what I've been able to gather so far from the limited words I can make out of this conversation. Anyway, not for real life.
Speaker 1:I'm sure, you're sure you're not sure you're going to miss that at all, all right.
Speaker 2:So yeah, no children were harmed during this episode, right? Dads maybe? Yeah, I can't promise.
Speaker 3:We're going to walk out of our offices and dads are just going to hand us babies and they're going to walk out. That's kind of what happens every time.
Speaker 2:Yes, so celebration of hope. What is it? Well, emily, it really came from your dream. I think I started talking about big, fancy, exciting events to bring people together, like five minutes after we first had the idea for the podcast. But the celebration of hope really came from your big dream, Gosh, last year.
Speaker 3:Well, it was my initial dream and then you took it and owned it and ran with it and made it like I feel, like I had the idea but didn't know how to bring the vision to life, and then you just did it. Amazingly, we make such a killer team. It's amazing, yeah. So I my best ideas come in the shower, because it's the only time I'm sort of kind of uninterrupted for like five minutes. And so I was.
Speaker 3:I think it was like last October, and I was like we need an event, we need something that is our first big public splash that gets the community involved. And we intentionally need to have it somewhere local, because so I'm in Ohio and Ashlyn is in Indiana and our local tribes, our friends and family and community have been our biggest supporters through our own personal journeys. And then, you know, as we've launched this Reliott's Hope Foundation and empowered by hope, and many times I hear the question how can we help, how can we be involved? And you know it's hard to kind of come up with. I'm not sure yet, I'm not sure.
Speaker 3:We're still evolving, and so this the idea was this is the first opportunity for the public to really join in on this mission of hope, get excited. It is a fundraiser with the goal that it will fund our efforts for the year of 2024 and beyond, and it is our very first big opportunity to share a lot of the stories of different families. We've touched stories of families who are going through these really hard times and the power of hope, and so the evening will be filled. Of course, it's on Derby Day, kentucky Derby, which you discovered, so that is going to be so much fun.
Speaker 2:Can you imagine all the big hats, the theme is a Derby affair and I cannot wait to see the hats and the bow ties and all the fun, all the fun that's going to go into this. Emily and I are both horse, girls or grew up horse girls, right? And so this just landed in our lap and it's perfect. We did not pick the date intentionally, knowing that it was the Kentucky Derby, but by golly, we are embracing it and we are going to run with it, and yes, that was a funny joke.
Speaker 3:It's going to be so fun. We had a lot of fun with the sponsorship package too, with all the puns of the race words. It's going to be really fun on the day of to just merge the vision of celebration of hope in the Derby day. Yeah, it's just gonna be so fun, so we're really excited. There's multiple goals of the event. First, of course, is involving the community, getting them excited and personally engaged in what we're doing, really pulling back the curtains on what it is that we're doing, the families that we're touching. And then, of course, getting the opportunity to raise the funds to be able to do it even more. And, ashlyn, now is probably the perfect time to reveal what is it that we're going to be using that funding to do for 2024?
Speaker 3:We have one really big goal and I'm so excited about it.
Speaker 2:Alright.
Speaker 2:So we love having the podcast and we are so grateful for our listeners, but it is time to take it to the next level of connection right of being able to make ourselves available, but also to make a space where Families can come together and be available to one another.
Speaker 2:So we are going to be working on creating a Community a private community, if you will that is geared specifically for, you know, parents, direct caregivers of children or expecting children who have medical challenges, and we are so looking forward to making this happen and, in addition to it being a, you know, a safe, private group where people can Share and talk about things that aren't just, you know, beyond the medical, because, right, there's, there's so much more to this life that is not the medical, and that is where we can really help each other and propel one another forward and share the, you know, the honor of giving hope to others, because so often what I know in Leon, I experienced on a regular basis is not only is it, you know, feel great to give gift, or give the gift of hope to others, but it's also a huge gift to the person who's sharing that hope.
Speaker 2:It really is a way that, oh my gosh, it is so healing and it is so fulfilling when you can draw on your own pains and challenges and unbelievable obstacles and and use them to share some light with others and and encourage them, and so it's just this beautiful Gifts that just keeps on giving those who are receiving. Before you know it, you'll be the ones that are giving hope to others and we're just so excited to make this happen. We will be providing other you know benefits to being in this group opportunities for prayer, opportunities to listen in on, you know, talks that will dive into specific subjects that Are really helpful to Navigating this life. We plan to bring in other experts Outside of our organization that can come in and speak to you and connect with you, help you learn about other organizations that are out there doing wonderful things, that so many times in land I come across and say, um, where was this information?
Speaker 3:We were just happy. The last week I came across another one and I was like I don't know if I should jump for joy or scream that I didn't know about this.
Speaker 2:That's one of those. You do both I did 100% did both, but um Emily, what else did you add?
Speaker 3:to that. Oh my gosh, I think you did it. You painted the picture so beautifully. In fact, I was taking notes because I was like, yes, that's exactly what we're doing. I think this is so we really took a lot of time to strategize about.
Speaker 3:You know, there's a lot of directions we can go in 2024. There's a lot of uncharted territory, lots of opportunities for us to be there for parents who have complex medical needs, and so we were, you know, in no way struggling with lack of ideas. The biggest struggle was which direction do we go? Because we're only two people right now. Eventually will be a massive team. It's gonna be great, for now it's two people and we're both managing our own children with complex needs, so it has to be manageable and, really, what can't, what really brought us focused on this one opportunity for this private community, was how we all be, how we started, right, ashlyn.
Speaker 3:We started out of this Drive, this passion, this need to be there for other parents at their greatest time of need. And I remember, before you called me and said, hey, let's start this podcast, I found so much fulfillment from one-on-one conversations with parents that would get, you know, very Unofficially referred to me of like, oh hey, I know so-and-so who has this baby and hey, I know, emily, let's connect them right. And I probably had 15 of these one-off conversations with parents, where sometimes it'd be five minutes, sometimes it'd be two hours, but it's just talking with them and whatever the issue that was pressing heavy on their heart at that Moment we could talk about and I'm never the one with the answers, but at least, having been through it, can be the one who asks questions and helps people, you know, refocus on, maybe, where they're at or where they're headed with their child's care, whatever. And I found that to be so fulfilling and so beautiful and the niche that we really fit in Ashlyn. And so when we started talking about what does 2024 look like, while we had a crazy long list of ideas, we came back to what is it that parents need at the moment of impact, the moment of diagnosis and and shortly thereafter, right, what do they need the most?
Speaker 3:And Eventually they, you know, would like insight and knowledge and education and tools have had a navigate this, but at that moment, they need community. They need community from people who get it, who've been there, who've done that, who are currently going through it. So, no, you're not alone and you can do this. That's it. You're not alone, you can do this. So that's what we came back to is, you know, we're going to get to all those other things that are on the visionary board over time, but right now, the goal is to meet those parents at that time of need, provide a community, provide a safe space and make it so that you know, the moment you, from the moment you find us, you can just take a deep breath and be like, okay, I'm not alone and I can do this.
Speaker 2:Yeah, I'm, I'm envision, I keep envisioning just this idea of creating a space that people can, you know, walk into or connect with, and it's just filled with All of these lighthouse keepers, all of these people who are shining light from their own lighthouse because they too have weathered storms and Now they hold that light and they protect it and they are there to share it with those who are just now, you know, starting out into these stormy seas with no idea where they're going and no idea what lies ahead, but just having a glimpse of that light from others who have, you know, crossed those seas and, I'll be it, a lot of us still crossing them but just to see that others have gotten there and it's, it's such a testimony, right, and I think that's where we can all just find that life raft of hope is just just seeing and connecting with others, and I really see us as being just like this safe soundboard, like Emily said, we have no intention, and this group will have no intention or purpose, of being a, you know, making recommendations for medical treatment, anything like that, not saying that you can't share.
Speaker 2:You know what worked for you to an extent, but you know we, we will iron out through those rules, so we don't have to worry about that today. But it's really just being able to help people get outside their own heads and feel safe and cared about by somebody who they know understands the weight of the emotion Of having to make decisions like this, because, my gosh, it is a really heavy armor to have to wear it is, and Even though you kind of cognitively know you're not alone and many other parents have gone through similar issues when you are in the heat of it it is so isolating.
Speaker 2:And so, yes, and your other child is your child, I will say that like I and I don't mean that harshly whatsoever, but even hearing other people go through the exact same diagnosis, if you will like it, still is never going to hit you as hard as your own child going through it, and that's okay. Nothing is more intense and there's nothing you should be more focused on than your own child's journey.
Speaker 3:Yeah, it's going to be so good and I'm excited that it'll be an opportunity. You know, in our experience there's a lot of really fantastic doctors, nurses, medical professionals who provide, you know, social workers, all the things who provide a lot of pieces to the puzzle of care for your child and for you as a family unit. And the one piece that has been the most missing and remains to be the most missing in our own journey is this piece we're talking about filling right here. It's the piece of families coming together, uniting behind just the trauma of the journey, the challenges of it, the joys of it, the highs and lows of it, knowing you're not alone and having a space where it's not diagnosis specific. You know, and I know, our case is very unique, but so is everybody we're talking to here. Like in our case, I could turn to the cleft group, or I could turn to the urology anomaly group, or I could turn to the neurodevelopmental group or the cardiology group, but none of them are really like. They're all so focused on one diagnosis or one area that it leaves me feeling like, yeah, but I still don't belong here because we're in this other camp that involves all systems, right, and so, whether you have cleft or urology or neurodevelopment or fill in the blank, doesn't matter.
Speaker 3:You fit in this community, because we are not diagnosis specific, we're not prognosis specific. We are journey specific, right, we are specific to the journey of having a child that has. That is not well, that is not healthy. That's what we're about. So that's really exciting. And I think it's what makes me really excited is it fills that pain point that I personally have had and I don't want to put words in your mouth, but I imagine you too and therefore it sets us on fire knowing we're not the only ones that have had this pain point and we're going to turn around and help others.
Speaker 3:And I think you nailed it too, ashlyn, when you said the members of this group will have the opportunity to, when they feel ready, turn around and offer hands of hope to others as well, and that is so healing. So I cannot wait to watch how this evolves. A lot of details still need ironed out. We're going to very publicly develop this thing, this baby. It's not developed further than what we've just told you, which is exciting, like we're going to very publicly develop it and bring you in on the journey, and so we would love to hear from you if there's something that, as you're listening to this, you're thinking oh, I would love it if this community had Bill in the blank. We might not be able to do it all right away, but we have kind of this ongoing visionary board where all ideas go, so that when we can get to it it gets incorporated, and so we would love for you to be part of the development of this program, and we want to hear from you about what it is that you want and need.
Speaker 2:Right, because we're building this for you, yeah, you know, for all of us. Shoot, emily and I we're still building it for each other because we're still in the throes of it. And just the other piece I want to throw out there's a lot of amazing groups, there's so many others out there and we're not there to replace anybody. We're not trying to come in and say, oh, we can do it better than anybody else. No, absolutely not. It's just there's enough room for all of us and we just want to make it as easily available to families as possible to find their, their network, their support circle.
Speaker 2:And, you know, I'm also hoping that people feel encouraged to come to this community, even to celebrate, to cheer each other on and relish in those victories and throw out timelines of you know, typical milestone achievements and be able to connect with other people who understand it is a huge deal that your two year old is sitting independently now yes, for your four year old and it not feel like. You know, there's no judgment, there's no, it's not coming from a place of sympathy. When you share it with a bunch of other people who can't relate, like to really be able to indulge in the experience of being celebrated, your child being celebrated with other people who understand the value of how monumental those things are. Yeah, I just I see that being another huge benefit to this community like this. Oh my gosh, I agree.
Speaker 3:And if you are pregnant and expecting a baby and you know they're going to have complexities, I can't wait for this community to be the beacon of hope that you can turn to to say I know in my head I can do this, but now I know in my heart I can do it because I'm watching this whole community of parents do it and I can do it too. Right, mm, hmm, that's going to be so powerful. I mean, oh my gosh, can you imagine if we had that when we were pregnant, how powerful that would have been Amazing. I can't wait, it's going to be great. Oh, and just to clarify, we are still doing the podcast. This is not in place of. This is in addition to Exactly.
Speaker 2:And, speaking of the podcast, I think it's good to maybe end with just a little look ahead into what you can expect with the podcast.
Speaker 2:So, when Emily and I started really chipping away and finding our focal point for what we're going to do in 2024 and that you know, all circles around this community creating this and making it very, very helpful, not just an open forum you know, we started thinking about what is so relevant to people when we're at this stage of the journey, when you're, when you're new to this or you're earlier in this, and so we are going to take a step back and you're going to hopefully come along with us on the journey of revisiting what that first initial stage looks like, that surviving stage, and then, after that, we will move into the, the searching phase, what comes along with that and just dive deeper into that.
Speaker 2:We touched on those earlier in 2023, had some great episodes on them, but you know, how many times have you listened to us say, oh my gosh, this thing could be its own episode. It could be its own episode. Well, we're going to try to actually follow through on that and maybe they won't be as long of episodes and would love your feedback on. If you know, is our shorter episodes you know better for you, or do you like the long conversation format and Lee and I obviously enjoy it.
Speaker 3:We don't get a lot of uninterrupted time. We're going to keep this short. Yes, we're going to keep this short. 50 minutes later, right?
Speaker 2:But it would just be really great to get your input on that and feedback. But through that we'll be, we'll be utilizing those podcasts and the research that goes into those and the conversations and feedback we have with you all to help make sure that we build this community the way that it needs to be built, with the right, you know, foundational pieces and elements that are practical, relatable and efficient, and all those things that we you know we strive to find that often feel like a unicorn.
Speaker 2:Yeah, you know, hasn't been discovered, and so we hope you'll come along with us on that journey. And, as always, if there's something that you would like to hear on the podcast, or if you feel like you have a story that should be on the podcast, by all means please reach out to us and, with that, if there's a podcast you listen to that you think that we should look into. You know, reaching out to connecting with, then do not be shy. We want to connect the more, the merrier and the bigger impact we can all make together. Yeah, greed.
Speaker 3:Well, with that, we will catch you next week, and thank you so much for joining us. Happy New Year 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 charlottehopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share.
Speaker 3:We hope it bears.