This is a rerun of an episode from earlier this summer. Ashlyn & Emily will be back next week with a new episode. Happy Thanksgiving to everyone, we are grateful for everyone of you!
Imagine the shock of hearing a cancer diagnosis for your small child, an innocent soul you would die to protect, only to realize that dying won't change the prognosis. If that's not hard enough to imagine, add on top of that the shocking discovery that your infant is also facing their own unique medical complexities while still undergoing chemo with your toddler. That's the harsh reality our guest, Lori Szabo, and her husband, Ron, had to face. As a very experienced parent to children with complex medical needs, Lori takes us through her unexpected journey, from the initial diagnosis to the daily challenges and joys that come with raising her unique family. She offers invaluable insights into parenting a child with severe illness, yet living life beyond the medical, emphasizing the importance of unity and resilience within the family.
From snorkeling with whale sharks in the Philippines to a hilarious encounter with spicy Indian food in Kuala Lumpur, Lori has filled her family's life with rich travel experiences. She is a passionate explorer, constantly seeking to learn about different cultures. As a mother of four biological children, an adopted child, and a host to an exchange student who joined the family, Lori's love for children knows no bounds. She shares these heartwarming adventures and her family's commitment to maintain a sense of normalcy, despite the medical needs of her children.
Life may not always be a serene sail across calm waters, but Lori reminds us that there is always hope and beauty in the chaos. Balancing the needs of a sick child with the needs of other siblings can be a daunting task. However, she provides insightful strategies on how to handle the emotional dynamics of such situations. She also offers a helpful look into the process of transitioning from parent advocate to support mom as children become young adults. As we end this enriching conversation, we would like to remind you that whatever emotional storm you may be weathering, remember, you are not alone. Together, we can navigate through life's turbulent currents. So, tune in, reach out, and let's walk this journey together.
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
This is a rerun of an episode from earlier this summer. Ashlyn & Emily will be back next week with a new episode. Happy Thanksgiving to everyone, we are grateful for everyone of you!
Imagine the shock of hearing a cancer diagnosis for your small child, an innocent soul you would die to protect, only to realize that dying won't change the prognosis. If that's not hard enough to imagine, add on top of that the shocking discovery that your infant is also facing their own unique medical complexities while still undergoing chemo with your toddler. That's the harsh reality our guest, Lori Szabo, and her husband, Ron, had to face. As a very experienced parent to children with complex medical needs, Lori takes us through her unexpected journey, from the initial diagnosis to the daily challenges and joys that come with raising her unique family. She offers invaluable insights into parenting a child with severe illness, yet living life beyond the medical, emphasizing the importance of unity and resilience within the family.
From snorkeling with whale sharks in the Philippines to a hilarious encounter with spicy Indian food in Kuala Lumpur, Lori has filled her family's life with rich travel experiences. She is a passionate explorer, constantly seeking to learn about different cultures. As a mother of four biological children, an adopted child, and a host to an exchange student who joined the family, Lori's love for children knows no bounds. She shares these heartwarming adventures and her family's commitment to maintain a sense of normalcy, despite the medical needs of her children.
Life may not always be a serene sail across calm waters, but Lori reminds us that there is always hope and beauty in the chaos. Balancing the needs of a sick child with the needs of other siblings can be a daunting task. However, she provides insightful strategies on how to handle the emotional dynamics of such situations. She also offers a helpful look into the process of transitioning from parent advocate to support mom as children become young adults. As we end this enriching conversation, we would like to remind you that whatever emotional storm you may be weathering, remember, you are not alone. Together, we can navigate through life's turbulent currents. So, tune in, reach out, and let's walk this journey together.
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, welcome to the empowered by hope podcast. You have Ashlyn and Emily here with you today, and also a very special guest, Lori. We cannot wait to learn more about her, to introduce her and to just pick her brain. I'm going to have Ashlyn introduce her because she has known Lori for many, many years. I just had the pleasure of meeting Lori about five minutes ago, so we're very excited. I love the dynamic of that conversation though, because having somebody who really knows the context of your story, Lori, and then having somebody like me who really doesn't, I think that's going to be a fun, dynamic conversation. Again, I'm not going to go into a whole lot of detail yet, but Lori has some incredible experiences under her belt that, I think, is going to be so insightful for myself and for all those listening. We were talking before we hit record about a few things we want to cover in this episode, and I was saying I'm going to be taking notes, so this is going to be great. Ashlyn, I'll have you introduce Lori and we'll go from there.
Speaker 3:All right. Well, I am excited to get right into today's conversation because, like you said, Emily, there are so many things that Lori is able to provide. I will say that when Lori and I, when we had our conversation at the beginning of the week, when I asked her she'd be willing to come on and help us, help our listeners, you had no idea how much you even have to give. So I feel very honored to be able to showcase that and really grateful to be able to share that with you all. Because so, Lori Zabo, I, like Emily said, I grew up knowing you. Our families have gone to the same church for years. My sister and I both babysat your children. Your oldest son was in my good friends with my brother, shared classes and, I'm sure, all kinds of pranks and who knows what else together. But you know, just wonderful family. You all have always been a great support system and you've been a huge support system multiple times for me with Emery. There have been a few times.
Speaker 3:While we haven't had a ton of conversations Since I started the journey with Emery, the conversations we've had really left a big mark on me, starting with the conversation at my brother's wedding reception. You just gave me that perspective that nobody else I had really encountered yet, because you, being further out from you, know that initial stage of shock and diagnosis. You know your children are older and I'll let you tell everybody about them. But just get excited, people, because this is the first time I feel like we are able to talk to somebody who actually like you, you sailed the ship successfully and you know the course. And, while life will still throw crazy things at you, you've learned how to weather the storms and you can show us all and you've shown me already it's all doable, and you wouldn't be doing it if it wasn't something you were capable of.
Speaker 3:So with that, lori, I'm going to hand it over to you and it would be awesome if you would just let our audience know a little bit about you. And I want to make sure that you share stuff about you and not just your journey with your children, because I think that's something that we all tend to do in this position. I noticed it, emily, earlier, when you were kind of introducing yourself to Lori. It was a great introduction, but 90% of it was about Charlotte. Yeah, I can tell a lot of the time too. Yeah, where I you know my story is actually a we story or a majority my kids story, but we want to get to know you, lori. So welcome and thank you for coming on today.
Speaker 4:So my name is Lori. As they've said, I am 55. To give you some sort of context, I have been married to my husband for 33 years. We got married right out of college. I am a French teacher. I've done that. I did that before kids, I've done that after kids. I've kind of done, you know, substitute teaching, different things in between. But that kind of gives you insight that I'm passionate about travel and other cultures and I just I can't get enough. I've been to 37 countries and just really, you know, I love an adventure, I love people, I love food, I love reading. But it also gives you insight to the fact that I really love kids. And so we have four biological kids how do I say? A bonus exchange student daughter who's become part of the family, and one adopted from Russia as well. We've lived in China a couple of times and for about eight years grew up in Michigan, but most of the time we've spent in Indiana.
Speaker 2:So I've known Ashlyn since she was in elementary school.
Speaker 4:So yeah, I feel I love that we still have this connection and her whole family, their dear family, friends, and I'm sorry that we have some of the connections that we have, but I guess that just makes us stronger and, you know, can relate to each other better, be a good support for each other.
Speaker 3:One thing I'm going to throw in here is, Lori, I don't think I even shared this with you, but one of the big things that Emily and I consistently talk about when people ask us about the podcast or Charlotte's Hope Foundation, like what's the why behind it, what we like to say is there's such a difference in talking to somebody who can feel with you and not just for you. There's such a big difference in being able to bridge that gap, is it just takes support to a whole other level, a whole other depth, that you, just until you experience it, you can't understand how much it's going to mean to you.
Speaker 2:Yeah, yeah, yeah, that's true, so true. Before we go down the medical path route I really medical route, and you can probably hear my kids are giggling and running around having a heck of a good time with their babysitter, which is awesome, because last time it was a lot of screaming when we were at my corner. We'll take the giggles. I just want to know, out of those 37 countries you've been, to tell me and I'm sure this is really hard but what was your favorite country or what drew you to one I don't know. Pick a memory. That's really funny.
Speaker 4:People always ask that and I'm like I am not a list maker, I can't pick favorites. Obviously, france is way up there for me because I'm a French teacher and I love the history and I love the culture and I love the food. But I mean, we've had some really amazing experiences as a family. One of the really big standouts is snorkeling with whale sharks and the Philippines with the whole family. You just take a catamaran and you sit on the edge with your mask on and your fins on and the captain's like there's one and you go swim out and they're so huge that they just move their tail a little bit, they're gone. So it was so fun and it was so amazing. And then I think another one was in.
Speaker 4:There's a place called ATM Cave in Guatemala. That used to be a Mayan sacrifice place. It's a two mile hike into the jungle. But our kids I think our youngest was like a sophomore in high school at the time so all of us it was the whole family again and we're like checking two miles into the jungle with our helmets and our like jungle shoes and we have to cross the river and we're like, oh, let's see if we can see any tape ears, you know, but we didn't see.
Speaker 3:Oh my gosh.
Speaker 4:But we're climbing in the cave and you're going and it's, and they blocked it off, like you cannot touch anything, but you can see like the skeletons have crystallized because of the cave and it looks just like I don't know Aladdin's treasure, magical, kind of weird, because it's, you know it's skeletons, but at the same time, like you're, you're standing 20 feet back but it's so like shocking and historically interesting and beautiful and like to do all that with the family and then just have that shared, those kinds of shared experiences and we talk about and we're so we just love to travel as a group and have these amazing experiences and we also have the time that like we were in Kuala Lumpur and we stayed in a bread and breakfast, that we didn't have a car, we were just saying we needed to get. We're going to Cambodia the next day. It was like a layover. We were living in China. So it doesn't sound, it's not, it wasn't quite as exotic as it sounds from Indiana. I'm glad, tom.
Speaker 4:So we're like we had to go to a restaurant and the closest place to walk to is like this Indian restaurant. He's like oh yeah, it's a great Indian restaurant. Well, this level of spice was something that none of us had ever experienced. We're like asking for the mild and we're like we're laughing so hard because we are all crying from the spice it was. I mean, it was like a level 15 on a scale of 10. And we're like we just need to go in and get some ice cream and my poor children are like we think we're giving them a chocolate ice cream to cool down their mouth. And it's coffee, and they're like seven and nine and they're like what is this? This is even worse, it's horrible. But again, you know, we all remember that and you're like remember that time and then you just start crying till tears run down your face again, and so it's really more about the memories and the places.
Speaker 3:That's amazing, I have to say but you all are also big Disney people, correct? Oh?
Speaker 4:my well, of course. Yeah, we've been to all the Disney's in the world multiple times, and one of the girls that we're talking about today works for Disney. We love Disney. It's a family thing too.
Speaker 2:That's amazing, you are inspired. But pre-children I was a big world traveler all the time and since then I think I've been on a plane once. I mean we've also been like jam packed hospitalization. So, yeah, absolutely, when things clear through a little bit, you're inspiring me to try to do a few things with the whole family. I was actually just telling Ashlyn we actually cleared a weekend and just spur of the moment thing, decided you know what? We're healthy right now, knock on wood, let's go do something fun for the weekend. So we're very excited about that. This is the first time we've done such a last minute thing, but we actually can this time, so we're doing it. So yeah, you're, you're an inspiration.
Speaker 4:Absolutely. If you have the opportunity to do something, just do it. Don't come up with reasons not to do it. Just do it. You won't regret it.
Speaker 2:Yeah, yeah. It's easy to be like well, the grass needs mowed this weekend and you know that project that is a gaping hole in our house probably needs dealt with and all that stuff. But you know what? Those will be there when you get back, that's right, that's right.
Speaker 3:I even say that sometimes my thought process has been that I'm working on pushing through. Sometimes it's just like the hassle of getting everything ready and knowing that it's going to be a lot of work, it's going to be getting off schedule.
Speaker 3:It's going to be coming home really tired and learning to push through that and, like you said, it's those memories you realize it really is worth it. But I think sometimes, just having gone through so much with the kids too, it can be. I'm just curious. I wonder if other people sometimes feel that way, where you're like I just want things to be low key, but then I think you miss out on some opportunities to really experience more life.
Speaker 4:Yeah, there is that balance, Ashlyn trying to keep things on a somewhat you know norm. I like I tried to make sure they still had nap time and regular meal times. My husband would get so annoyed. He's like they're going to be okay. I'm like nope, meal times are regular meal times. That's what we're doing, yeah.
Speaker 2:Because we hungry kids are bad for everyone.
Speaker 4:Exactly.
Speaker 2:Exactly. That's so funny. Oh well, we better dive into our content. I don't even know where to start, but, ashley, I know you were heading somewhere and then I interjected with the travel thing, so that was okay.
Speaker 3:Like I said, it's exciting, it's, it's fun to actually get to know more about us, like the parents, and maybe I don't know. I think I'm going to try to think about that when next time I'm introducing myself or somebody's asking me you know about my life. Try to remember that there's an Ashlyn besides Ashlyn and Emory, yeah, even though that feels a lot more comfortable, but I think that is important to remember, especially as our children get older, which, lori? That's why I was so excited to have you on here right as you have that experience. You've gone through those transitions. You've been where Emily and I are right now. You've you've also experienced having multiple children, more than one child going through major medical needs. You have way more experience than I wish you had in regards to that, but it is encouraging, like you know.
Speaker 3:like Emily said, at least, you still found travel, you still found so many joyful experiences with your family that life didn't stop. After the medical crises and even with continued medical needs, you all still have found a way to live really beautiful, happy, fulfilling lives. And I just think there's a lot of us out there who we could use that inspiration and that hope that you bring and so, if you wouldn't mind, maybe just give us some, you know, just give us a little bit of background about how you came in, to, came to be part of this club of parents who have children with medical needs, and kind of what your journey into advocacy looked like.
Speaker 4:Okay, so our number three child we'll call her M was born in 1997, when she was two years and five months old, on December 1st of 1999. That's really, you know, drilled into my brain. She was diagnosed with acute lymphoblastic leukemia. She had been sick for a couple of weeks. We thought it was a virus. I just had a bad feeling and they did blood work because they also kind of had a bad feeling, although we couldn't put our finger on it. And that's what it came back. We found it very early. The oncologist thought maybe six weeks earlier it would not have been detectable. All is the most curable cancer for kids and has the highest survival rate for toddler girls. So we were really blessed with that. We had a fabulous oncologist, Dr Randy Hawk, who at the time was at St Vincent Children's, now Peyton Manning Children's Hospital, and you know it was at that point. You know people are like you know, when can you give everything over to God? Well, that's when you don't really have an option.
Speaker 2:You know right.
Speaker 4:Like I have zero control over this God. Like I can make sure she gets her medicine on time. But we interrogated that oncologist to make sure he was the right guy for the job. But like it was out of our hands and we knew it was out of our hands. And like what can you do?
Speaker 3:Did you get to that point fairly quickly after receiving the news, or what was that?
Speaker 4:Oh my gosh, that well, I mean, you know, I was always. I was always a Christian, always religious, I always prayed, but that that was just like. That night I was just like on my knees on our hospital bed, like. And for context, my other children were seven years old, five years old, and then I had a five month old nursing baby, so she was at the hospital with us too. That day. She was diagnosed, she was admitted, they put in a porticaff. That night they started chemo. They started chemo in the operating room, in the operating room while they had her under sedation.
Speaker 1:And you know, we were, we were in it.
Speaker 4:We were in it that first. When that blood work came back, we were in it.
Speaker 2:Wow.
Speaker 4:Yeah, it's. It was kind of crazy, and so my husband worked a half an hour north of where we lived and the hospital at the time. The roads aren't what they are now and it was about 45 minutes to an hour drive each way, so it was challenging. We didn't have any family in the state. Our parents we grew up in Michigan, our parents were all up there and our siblings were there and we really really relied on our friends and our church family for a lot. So that was our our welcome to this club.
Speaker 3:I'm still trying to catch my breath just thinking about it. I did not, I guess. Obviously I just didn't work out. You were a young kid at the time, Ash, I was younger.
Speaker 4:yes, at the time.
Speaker 3:But I mean just even hearing that now as a mom, like do you think it was harder on you or do you think there's a part of me that's like I just don't even know how you process that being, process, that being thrown into that so quickly, like did you grieve right away, you feel like, or was it delayed because you just had to jump All in?
Speaker 4:I mean, I don't even think I would say what I went through was grieving. I would say it was a combination of give me a list of things I need to get done and what do I need to hold the family together, make this be okay for everybody. You know, I don't know. Damage control you went into action.
Speaker 4:Damage control Really. Yeah, I didn't really take time to process how it was affecting me and it really hit my husband hard like a ton of bricks. At first they thought maybe she would have mono or something and I called him. I said they said we have to go to the oncologist. Like right now you need to leave work. He's like can it still be mono? They don't send us to the oncologist for mono. And he got angry and he was a little bit in denial and this all went very rapidly and I'm going to say 12 to 24 hours like he went through all of those grieving emotions very quickly before he was also in, like okay, we're in action mode.
Speaker 4:But I don't really think I took time for myself to think about how that.
Speaker 2:You didn't have time. You had a nursing baby and two older kids and straight into the OR Holy cow and you have other children that brought you into this medical community.
Speaker 4:Yes, so the five month old baby will call her L. She was not growing as quickly as we thought she should. We knew her head was a bit large for the rest of her body, whites of her eyes are called the sclera, that was blueish gray and we had this information. But we, you know this was really pre internet, this is 1999.
Speaker 4:Even doctors didn't really have access to that sort of thing, and so we knew we had these outwardly visible signs of a few things, but we didn't know what that meant and about when she was about two years two years, three months we discovered that she had osteogenesis imperfecta, type one, which is commonly called brittle bones, and by the time she was two she had had two broken bones that we knew of.
Speaker 4:But once we got her into a geneticist and a specialist oh, by the way, there's no osteogenesis imperfecta specialist, so there are just doctors who kind of take it on as a side project. So we were seeing a pediatric endocrinologist which has nothing to do with osteo anything oh, sorry about that and they x-rayed her whole body and discovered that she had some compression fractures in her spine. We have no idea when that happened Could have been in Udrow even, we don't know. Wow, and some breaks that we didn't know about. But and then as time, of course the one that was going through cancer treatment was not quite done with cancer treatment when we found this out, so we had a lot going on, and of course they weren't getting treatment at the same hospital as each other, because the younger one could only be treated at Riley Children's Hospital here in.
Speaker 4:Indianapolis. They were the only ones that had any experience with it whatsoever in this state. So and that child turns out has other genetic anomalies. Typically, oi is an inherited disease. One of the parents has it. You have a 50 50 chance of passing it on to a child if you have it. However, in her case, complete genetic anomaly, which happens in about 0.2% of the cases.
Speaker 2:Unfortunately, there's so much that you just shared that I can relate to, like the lack of a specialist for this situation around the globe. There is no specialist, you know, and that you know. 0.2% chance and that happened for you guys. Yeah, we're always. Every time a surgeon or a doctor says, oh, there's a less than 1% chance of XYZ, I seriously just look them right in the eye and say, well, that's going to be us. So the question is, are we willing to play with that number? We're always the less than 1% chance.
Speaker 4:Yeah, yeah, and it's so strange to have the two girls back to back having different but, you know, significant medical complications.
Speaker 3:Yeah, how did you and Ron handle that, like after receiving L diagnosis? Like so, like literally you were still going through stuff. Like just curious, like from the perspective like of your marriage, like just how did you guys handle that emotionally? What did support look like? Because I mean you guys both had to be. I just can only imagine how depleted in multiple ways.
Speaker 4:I think I told you this on Monday, ashlyn One of the best pieces of advice we got was from M's oncologist about how to go on with that kind of diagnosis. And he said you know, the very best thing you can do for your family is to keep life as normal as possible. And he said, I know that sounds ridiculous right now, but if they have baseball, you go to baseball. If you have gymnastics, you go to gymnastics. You go to a movie on a weekend. If that's what you want to do, it. Don't make your life cancer treatment, don't make your life.
Speaker 4:This child Maybe break a bone if they try to ride a bike kind of situation. And so for Al it was. We knew that her bones were breakable but we did not severely limit what she could do. If the other kids wanted to go out and play outside on the swing set and climb up on the Eagles Nest, I was right there with her. But I certainly let her climb up on the Eagles Nest and play in the sandbox and go on the swings and, you know, jump up and down on the bouncy bridge or go swimming at the neighborhood pool all the time, because swimming is one of the best things. Or you know things like that. Just let her be as much of a kid and not make her life about the fact that she has brittle bones and the same thing with the cancer treatment.
Speaker 4:Like you know, you just got to do what you got to do. And I was telling Ash again one time we had planned a trip for spring break to Washington DC and it was during M's cancer treatment and she got the all clear to go from the doctor and we went and we were going to the national zoo that day and she came down with a fever. And when a cancer patient gets a fever you don't mess around. So we call her oncologist. Here we are in Washington DC you know he is an Indiana and we're like she's got a fever, what do we do? And he's like oh, I'm sure I have a colleague at George Washington University right there, let me make a phone call. So he called and this is again. We had a cell phone but they were not smartphones by any means. And, long story short, he got us connected.
Speaker 4:My husband took M and got her IV, antibiotics and fluids and stayed at the hospital with her that day. I continued with the kids at the national zoo. We all met at the hotel that night. Everybody got a good night's sleep. M was feeling completely better. The next day she was three. She was in a stroller anyway, and you know, we just went on because life goes on.
Speaker 4:It's not about the cancer, it's about life. And you know, some people would say maybe that was the wrong thing to do because you know your child's not feeling good. She was the one that demanded to go to Washington DC and she wanted to see, and this cracks me up. For whatever reason, she decided to call him Abraham Stinkin.
Speaker 2:She really wanted to see that.
Speaker 4:Yes, oh, she has a huge, huge history buff. Let me just say she's the child that asked for the teacher's store. From the teacher's store they had, like ancient civilizations, history posters for history classrooms, but that's what she decorated her room with when she was six. I mean, she's just that kind of kid. So she really wanted to see the Washington Monument in Abraham Stinkin and the Panders, so that that we were. She was the one that wanted to do that trip, so she would have been unhappy.
Speaker 2:This is such a good conversation. I told you I was going to be taking notes. I love this Partly, I think, the fact that you had older kids and life was well in motion, with being in the throes of child rearing before you had illness come in right yes, severe illness. So life was already in motion and life doesn't stop right. In our case we had I mean, this was how raising children started, and so it's kind of like all we've ever known. But I love how you're kind of shifting the mindset to how do you help this just become part of life rather than life become this? You know, right, that's so good.
Speaker 2:Even just down to the example of we're talking about what therapies to enroll Charlotte in, I keep finding myself really resistant to it and I can't figure out why. And now I'm. I mean, I've been thinking about this for the last couple of weeks. I think it's because it's like you know what? Can we just enroll her in some really fun activity where she gets the same exercise? I realize it's never going to be the same as a trained therapist who has a lot of same name as a trained therapist who works on XYZ muscle, but you know, I wanted to run around with her sibling and be enrolled in the same soccer program and not not have to haul all the kids to another therapy program where she's the medical child instead of the kid kicking a ball.
Speaker 4:Exactly and I think I think that's okay. I think if there are deficits that you're seeing that aren't being met, that maybe you need to go to special therapy for that. But I think it's totally fine for her to be a kid playing soccer. I think she should be a kid playing soccer because you gotta remember that emotional and you know age appropriate development by hanging out with kids her age or doing normal things are going to enrich her life significantly.
Speaker 3:Yeah.
Speaker 4:Absolutely.
Speaker 3:I don't think you're ever going to regret letting your kid be a kid and you know it starts like I don't know. I struggle with you, know the questions of you know, what do you? What is worth risking? What is worth? What do we need to take action on? What can we let go Like I found, like I've even gotten better about like anytime Henry would show a symptom that could potentially have anything to do with the UTI, like my first thought was like okay, we have to go to the hospital, we have to go get the special catheterization done for a sample.
Speaker 3:And now I'm just like if I'm not super sure that it's that, then I'm comfortable. I'm like we're going to ride this out, because why put her through all that? I wouldn't put my other kid through all this just because you know they spiked a fever. So even things like that, I think learning to like let things just be what they are, as opposed to always being in emergency mode, which is where I feel like I was stuck for a long time. Emily knows very well how stuck I was in emergency mode. That is almost I don't know. It was almost harder to shift to the mindset that I could look at things as just normal everyday things. It was kind of hard to get myself to step back from, you know, having an eagle eye on everything and being an intense advocate and always looking for the next problem to solve.
Speaker 4:Yeah, it's a really delicate balance between being vigilant and being mindful. That makes sense. Yeah, because you know, and I think my husband, for better or for worse, he tends to take things less seriously medically. Going back to, can it still be mono? I love that, but you know he always has more about. Let's give it a couple of hours and see mindset, you know, unless it's an obvious, like you know, subcutaneous, but you can tell displaced pressure, right.
Speaker 1:You know Right, yeah, yeah, we're going to the hospital for that.
Speaker 2:But, yeah, I love that, yeah, and you know what I think when you're in the height of surgeries and treatments and whatever, it's natural to kind of be at that hypervigilant state, and in some cases that's okay, but making sure you don't stay there, right, like I think right now it was okay that for the last month I was hypervigilant and now I finally can breathe, we're out of this major surgery and it's time to take a deep breath and let that fever ride for a day, see what happens, you know, or whatever the example is. So, yeah, this is so helpful, so I want to know. So it's obviously a lot of strain on a relationship to navigate all these challenges, and I mean every relationship has. I mean, life is challenging, right, but I'm curious what have been a few things that have really helped you and your husband to stay strong and united through it all?
Speaker 4:Oh, I don't want you to have any illusions. We were not always united.
Speaker 2:Sure. I would expect that that would be the case.
Speaker 4:But we kind of we would have conversations about basically we kind of divided and conquered right Like these are going to be my responsibilities, these are going to be his responsibilities. We're going to make sure that we're together on, you know, these family activities, but there's no way both of us could do everything. So we and again we did not have family here, so it was they came and helped when they could, but they were. I mean, they were our parents, were my age now when we were going through this and it was just a team effort, really working together as a team. Of course, we disagreed on how some things were going to be handled and whoever was in charge of that category got the final call, you know.
Speaker 4:So you know, if, if it was me and it was a medical concern and I felt it was time to go to the doctor, and he didn't think so, and I felt like stronger about it than that's what we did. Or if he was, you know, he was in charge of whatever grocery shopping, baseball practice, whatever the case may be. But really, I mean we just really tried to make it a team effort and we divided up duties so that our family could run as smoothly as possible with a dad that's working, you know, to support the whole family. I mean, I know you guys know this, but even back when our daughter was diagnosed with cancer, it was over a million dollars in treatment and thank goodness for our great insurance and he was very conscious of being.
Speaker 4:You know how important his job was at the time. I was a stay at home mom at the time, Thank goodness, because many mothers do have to give up their jobs and their careers, especially when working from home wasn't an option. So that's another factor that thank goodness we did not have to cross that bridge. But yeah, yeah. So divide and conquer and teamwork.
Speaker 3:I love that. I'm curious because you know I wouldn't. I can't say that it's always necessarily the mom role, but I know that I've talked to a lot of moms and couples that when you first receive a diagnosis, like and I did this personally, so maybe I should just speak about my own example I was so consumed by it that I had a really hard time even allowing my husband, andy, to step in and like take more of an active role in it. And I think after a while he realized like okay, well, you know, you're just going to keep handling it. You just keep running ahead with everything and not necessarily even have like. I would usually tell him after the fact about something how do you like, do you feel like this was a good decision? What do you think about this? And I've gotten a lot better since then.
Speaker 3:But I'm just curious if you have any advice, for you know, maybe those parents, that couple who are new to diagnosis and whether it's the mom or the dad, one of them is just having a. Really you know is is holding on so tight to everything and even sharing with her, sharing the weight of it with their partner, feels hard, because I remember thinking like I need to be the one with Emery all of the time. She needs mom, like Andy's great, but like I'm her mom, like I'm supposed to be there for her all the time, no matter what, and I really had a hard time stepping away from her at all.
Speaker 4:Yeah, that is really hard, I think, for us. Again, I don't want to portray it like it was easy in any way. We don't think your life is easy.
Speaker 2:I totally would assume it was not.
Speaker 4:No, no, no, no. I can talk about the relationship between my husband and myself Like, of course there are conflicts, but you know, at the at the time you got to remember, I had a nursing baby and I had a child in cancer treatment and I couldn't be the mom of a nursing baby and the mom of a patient 100% of the time I had. God made it such that I had to give stuff up. I realized how important though that my other children's time with their dad was. I mean, they had such a great relationship with dad and wanted to spend time with dad and he, he carved out these fun little daddy daughter activities and things that I I mean that you know I'm not daddy. We could do fun mommy daughter activities where we making tons of beaded necklaces and bracelets. I'm sure you got some of those, ashlyn, in the hospital, because you know, in coloring pictures and things like that. But daddy was like Disneyland fun. You know video, daddy and paper mache messy. I don't care, daddy, because I'm not going to make a mess like that.
Speaker 1:I've got these other kids clean it Exactly, I don't have to clean it.
Speaker 4:But you know, I think the balance for me was a mandatory thing because I had the nursing baby and I had the other kids and you know, again, it was really for us it just a really big team effort of like these are the things that's going to get done and you know, what can we do together and what do we need to take on for getting it done.
Speaker 3:Yeah, maybe the takeaway from that is just is making a point of having that kind of like carving timeouts who have those conversations. Don't just assume that it's understood like that one person is going to do this and one person is going to do that Exactly, oh communication.
Speaker 3:It's going to be a really communicating, Whereas I know that I we fell into the trap of just kind of assumptions and because we've been able to live our lives like that up to that point, Like you know, I know he was going to take care of this stuff and I was going to take care of our you know my stuff and that was fine. But when, when this happens, it's no longer that easy, Like you can't divide yourself all different ways to carry everything. So just having an actual conversation is probably a really great place to start.
Speaker 4:Yes, exactly Right. And I think that people in all relationships kind of fall into that hole and I think I'd rather over communicate and have the air clear than to like be like, oh, I don't know if he was okay with this restaurant or that decision or whatever. I and even after 33 years of marriage, now that we're empty nesters, it feels like did he always been like this? Like we were so busy doing other things that I didn't process some of the stuff you know after 33 years. But but communication in all aspects is such an important part, but and I think, like you said, ashlyn, like feeling fiercely protective of your child is a natural thing. But just remember that you know it takes two parents and you've got to, you've got to share.
Speaker 3:You've got to share.
Speaker 4:It's actually really basic principle that, yeah, you got it, you got to share the burden you got to share the joy you got it, you've got to share.
Speaker 3:I'm sitting here almost getting a little red thinking. I've been getting on. You know, right now we're trying to teach Emory about sharing, because her parents are trying to teach Emory about sharing, because her new thing has been that she's learned from her brother no mine, and she'll run and just grab. You know, just mine. I'm realizing maybe she didn't just learn that from her brother.
Speaker 2:Yeah, kids are the worst and the best mirrors, aren't they? Yes, the best because it's honest, the worst because it's so hard to look at the reality, oh, my goodness. So I am curious, and I know I mean, there's so many directions we could go, just like every podcast that could stem off into 10 more episodes, right. But I'm curious, now that your children are venturing off into adulthood, learning how to, you know, advocate for themselves, what are some things that moms, dads and caregivers who are listening now could keep in mind? If they they're in the stage of kids ages, you know, zero to 18, what can they do now to help their kid grow into their own advocate, knowing that, of course, you as mom or and or mom, dad, caregiver, are going to be there to support them. But how do you help lay the groundwork so that they can step into the role you've been doing for them when necessary?
Speaker 4:Really, I think it goes back to what we were just talking about communication. It was important for my child, like you know, she was done with treatment by the time she was five and she went to elementary school. And how much do you remember from before you were five? You know, and I don't want to constantly bring up in her life like, remember, remember, you're a cancer survivor. But at the same time I had to teach her like this is the kind of cancer you had, this is the you know. This is important for you to know.
Speaker 4:You have some residual side effects and that's why and you know so she is just an informed, you know an adult of what. To be honest, she has forgotten to put it on her medical history because she's in such good shape now Thank goodness, she's 26. She had residual, really weak legs. She lost her ability to walk a couple of times during cancer treatment, which again she could be put in a stroller. So it wasn't as traumatic as it could be. If you know, the child was 15 or 16. But one of the you know we'd done physical therapy and whatever, and they're like well, you know horseback riding is a really great thing. So she definitely got horseback riding lessons out of that. So she, she's like, you know, it's not all bad. Yeah, right, it's not all bad. Did she have a couple of horses? Yes, she had a couple of horses and she loved. She loved that and you know, people will give you horses, that's not the problem. The, the, the expense of a horse is paid. Oh my gosh, after after Don't.
Speaker 2:I know.
Speaker 4:Yes, but for my, for my younger child, for my younger child who has lifelong genetic, you know things going on, just you know, helping her understand what's going on at the time and answering any questions they have and kind of, as they get older, explaining to them what you've been doing behind the scenes that they probably don't even know. You've been doing, like what, what doctors go with what? You know what? Just like your child my child has many specialists. Like what doctors go with what? Why do you see this doctor? Is this doctor a one time thing? Like what the heck is a sleep dentist? Yeah, you know. Like how is it all related? Just like trying to communicate all of this information and not in an overwhelming way, but just be like hey, we're going to go see the neurologist today and the neurologist is the one that helps you with your seizures.
Speaker 2:Yeah. So I have a question for you and it's very much pertinent for myself. So this is a selfish conversation, but I think other people will appreciate it. So something I find myself doing a lot, and I'm sure you do too, and many listeners or have in the past. I'm also a stay at home mom at this point be a necessity, and I like to call myself Charlotte's medical manager that's really my title and of course then you know driving foundation things with Ashlyn and all that fun stuff. But I find myself I'm at home all day with my kids but I'm on the phone Probably.
Speaker 2:I think we said in the last podcast it was on average three hours of phone calls a day of ordering the right durable medical equipment, getting the right scripts, getting the right orders sent to the right doctors and the right companies that can ship you the right things, and following up on that shipment.
Speaker 2:That didn't show up. That happened this morning and I broke down in tears right before this podcast because it's been five phone calls and we're a week late and now we have to try to get a rush shipment before we can leave for the weekend and all that stuff, and yet trying to be present with your kids right, trying not to be glued to your email and the my charts and the messages from the doctors. And yet you can only get them when they call you, because if you miss them then it's going to be another two or three days when they're out of clinical. You know rounds that they can actually call you. So how do you try to be as present with them as possible and still manage the medical mayhem on top of, of course, the administration of the actual treatments that need to happen right?
Speaker 4:So, in part, some wisdom, the best you can do is the best you can do. Do not beat yourself up. You can do as much as you can while they're sleeping, but you got to take that phone call when you can take that phone call and that is not under your control. Don't beat yourself up Like literally. The best you can do is the best you can do and you're only human. Give yourself grace.
Speaker 2:If anybody else listening is about in tears right now, I'm right there with you, yes, and I think you know that's so good and maybe that's even something to share with the kids when they're having their fifth meltdown because I'm on the phone call again and I'm not pushing them as high on the swing as they want to be pushed. You know, it's just like doing the best I can and when this phone calls over, I will push you as high as you want to go Until the next call comes Exactly right, exactly right.
Speaker 4:You know you can sit in the sandbox on a phone call, but you can't. You know this is the best you can do.
Speaker 3:Yeah, yeah. I feel like I'm almost thinking about this that when you asked the question and I almost felt like, like in my head it was like what's the bullet list of? Like how much time should you try to spend with each kid and how much like?
Speaker 2:yeah, how do I check off the list to make sure I feel good about it?
Speaker 3:Like what is the definition of being a good present mom? It felt like you were trying to, like Lori, tell me the box to shove myself into and grade myself on yet again. Yep, I have the way that you said that, lori, too. What I also took from it was you know, you're doing the best that you can, and so in those moments where maybe it is a little more quiet and you can be present, maybe it's the quality of the time that you get to be present as opposed to the quantity, and just appreciate that, when you're having a good moment being present, like that's something to celebrate.
Speaker 4:If you're not having a good moment while you're trying to be present, it is what it is Exactly right, exactly right, really enjoy those times when you're reading the bedtime stories and praying and, you know, having dinner as a family, like that, you know, you don't think and I don't know. I always thought it was super important for us to have dinner as a family every single night, even if my husband didn't go home from work till 6.30. I'm sorry the kids are having a snack at 4.30 because we're eating dinner together as a family. Right, and those times, looking back on it, are the times that are the most important. You know, they don't remember when I was like calling the insurance for 50 second time, you know, or whatever it was. They do remember. You know dinner together, being at the pool, you know, whatever it was, they remember. Those things they don't, they're not gonna remember. I mean, I'm sure Charlotte will be like mom was my biggest advocate, you know. But yeah, focus on the good stuff.
Speaker 2:Yeah, so this is another question. Sorry, I'm totally ramrodding this, ashlyn, but it is so insightful. If you knew the issue was going to.
Speaker 3:I knew this was going to be a really awesome connection. I'm just enrolling the show.
Speaker 2:So I'm curious how did you help the siblings Kind of process what's going on, not feel left out, but also recognize, you know, at certain points certain kids are going to require a lot more attention than others. What were some things you learned along the way? Or even, maybe in hindsight, that you think, oh man, now that I know this, hey, all you listening. Keep this in mind.
Speaker 4:I think you guys give me a lot more credit than I deserve for, you know, thinking. I've thought through all of this.
Speaker 2:You know sometimes not thinking through it is probably healthy rather than obsessing over it.
Speaker 4:Yeah, no, I mean, my older two were always my helpers, you know, before even the third one got sick. They, I always kind of gave them a leadership role. You know, they were early readers and I would have them read to the baby, or I would have them run and get diapers for me, or whatever the case may be. Or you know, you, you sit next to the baby in the bouncy seat, well, I go to the bathroom, kind of, and they really relished those leadership roles. And I know it's not that way, for example, in your case, because in your case your eldest child is the one that has more medical complications.
Speaker 4:But also, I tried, you know, as the younger ones grew they became big cheerleaders of their older siblings, as, like you know, they got dragged to soccer games and baseball games and you know, again, we tried to communicate. Like you know, this is their activity, or they support you in your activity, and just kind of the family stuff. But I will say that they were both. The older two were both heavenly, heavily influenced, maybe heavenly influenced too, what they saw happening with their younger siblings. I am a hundred percent sure Daughter number two is a doctor, and from the time she was about five or six when her sister got sick. She's like I'm going to be a doctor.
Speaker 4:And there were times when we are our eldest exchange student daughters, also a doctor who went through it first, and she's like I don't know if you want to do this, I don't know if you want to do this. And she's like, honestly, it's the only thing that even remotely appeals to me, it's the only thing that sounded good my whole life Like this is what I meant to do, and I'm sure you know that was that was just part of it.
Speaker 2:It's definitely shaped their lives as well, and I think it can be easy to worry about how does it shape their lives negatively and I fall in that trap plenty as well, especially from the emotional fallout of it all. But it also is such a beautiful shaping in a really good way, Like, yeah, they learn empathy to a level that most kids don't get maybe ever, you know and they learn how to hold a hand while somebody's going through a treatment. I mean, every single day when Charlotte gets a treatment for her GI track, Liam is on the ground holding her hand.
Speaker 3:She's always like batting him off, saying don't hold my hand, but then he's rubbing her head, he's doing whatever it takes to get in there.
Speaker 2:It's so sweet, you know so, and I think, something we actually talked about a lot with this last surgery. Our middle child had a really hard. We're still dealing with the fallout of the emotional whiplash of it all for him and but something that actually worked beautifully and I. This was totally a god thing. We were at the hospital. We brought our son with us because we knew it was going to mean the most like he was going to have a really hard time if we left without him. So we took him with us and the first few days of surgery and recovery he was with us and then we had him go back home with family and I knew the separation was going to be really rough and he was going to be really upset about it. So I but he's also a worker, he wants a job, he wants something to do, he wants to help. So I know he's four, so I knelt down. Well, first I was like God, help me. I don't know how to make this positive, but he has to go. So for everyone's sake, he has to go. So I got this idea and I totally think it was God being like here. This is what you need to do Basically, tell him we all have a job this week and none of us like our jobs.
Speaker 2:I don't like that. We have to be in the hospital. I don't like that. I have to monitor her pain management and manage all these side effects. Charlotte does not like that. She's having to recover. Dad does not like that. He has to keep bringing me hot meals and I never eat them until they're cold, like all these things you know, and but your job is that you need to go home and you need to help me with your sister until we get back. And he puffed up and he stood up and was like Okay, and he got in the car and off he went and that was that.
Speaker 4:It was amazing. Exactly right. When you give the kids responsibilities, they respond well to that.
Speaker 2:Yeah, when it's not just like oh, you have to go home because that's what you need to do.
Speaker 4:No, it shows them their value, that they're, they're needed and that they're you know they, they're part of the family and they have responsibilities to be, with them, yeah yeah, I'm blown away by that.
Speaker 3:That was a fantastic idea.
Speaker 2:Don't you love God moments?
Speaker 4:He's so smart Sometimes you did that with all you took call to England to be with them.
Speaker 3:I did. I don't know that Cole felt the same sense of pride and some of the responsibilities, but he did in the hospital. He did. He was really really great in the hospital and, yeah, he did make a huge difference.
Speaker 2:In that I'm super proud of them yeah it's a it's a fine line, like everything we've been talking about here, of involving them to the point that they want or are prepared to be involved, and sometimes you don't know until you've over involved them and now you have to get them out.
Speaker 4:Yeah, true, you don't want to make them responsible for their siblings health. No, at the same time. If they want to be involved, you find ways to.
Speaker 3:Yeah, I think what I struggled with was Cole. I think what was a little harder about the experience in England and why Cole did be to go home a week earlier than what I did with Emory was and I struggled with it. I think he saw so like he saw so many what I would call traumatic moments, because Emory had so many bouts with pain just from the spasms that can't really, that are extremely difficult to treat. So you know she'd she'd be playing one minute laughing and then next thing you know she's throwing herself on the ground and she's trying to, because it's like a labor contraction I guess. So she's trying to move around, trying to get away from the pain and you know she's screaming or crying and and as soon as it's over she's back up, but then like every diaper change, it was like All right, all adults, and you know all the adults have to go and it's two or three people. They're trying to do it and she's screaming and sobbing the whole time and I struggled with how much of that he saw Like that's why I kind of wondered us like am I doing the right thing letting him be around all this?
Speaker 3:Because, like I could see him giving more and more emotionally charged over time and and he kind of started to get to the point where he was like, no, I don't want to help. But then what I found out was then he started being scared that he was going to start hurting in ways that she was like because we were talking about like she got constipated from amines and dehydration stuff, and so, you know, we were trying to explain to him at one point like she's in a lot of pain right now because she needs to go potty, so like. So you know she'll be okay, but that's why, well, then he got his head. If he did so, then we had him. So then I had two kids that was really fun to deal with over in England and from the end of this episode, be like Gee, thanks, mom, really appreciate you sharing that.
Speaker 3:But it just it was so interesting to me how he puts it. I mean, if I'm honest, in the moment I felt really bad about it that he was experiencing that. But I don't know, but listening to you two talk about remembering, like, the good things that come from it, like, yes, did bad things affect him For sure, but I don't think that I've stopped to look at the positive things that happened. You have a lot of really great experiences, like in the hospital and talking to doctors. You know, showing respect and being patient and helping nurses and helping a sister, like those were all good things and I feel like I honestly have forgotten about them.
Speaker 4:Or those are great things, those are great things. Yeah, I remember the good things.
Speaker 2:He also got to see a mom and a dad who really, and a grandma who stepped up and took amazing care of his sister, which is a very good, you know, amazing thing. And I like I think about what Charlotte siblings got to witness in this last surgery, and it was an entire army of families showing up at different moments to help, you know, and as much as the passing of kids from one person to the next can be challenging, it also shows them you have lots of people who love you, you know, which is really amazing. So well, we have covered a lot of amazing topics and I see that we're pushing on an hour, so I guess is there anything else, lori, if you, you know thinking about those who are tuning in, is there anything else that you just really want to share today before we wrap it up?
Speaker 4:You know, I just want to give people hope, because life is messy and it's always going to be messy, but there are always beautiful things, like we were just talking about. And you know, nobody gets out on skates. So this is, this is what you've got, and do your best in the moment and appreciate all the nice little things.
Speaker 3:Yeah that's beautiful. Thank you so much, Lori.
Speaker 2:Thank you for having me. It was so nice to meet you, Lori. Yes, nice to meet you too, Emily.
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. We hope it bears.