Navigating a Month in the Life of Raising a Medically Complex Child

There is so much joy to be had in the midst of the chaos. That is the key takeaway as Emily K. Whiting shares a month in the life of pediatric complex care for her daughter Charlotte. 

As Emily recounts the last month's wild journey of outpatient appointments, ER visits, infections, unidentified excruciating pain episodes, fevers, DME orders, IVs, catheters, blood draws, ultrasounds, x-rays, prescription refills, side effect management and even a vacation snuck in there somehow, you'll get a sneak peak into the constant barrage of medical management for a child with complex needs. 

As Emily shares the sometimes overwhelming amount of issues that arise in Charlotte's care, she coaches listeners on how to find the joy in the midst of the chaos. 

In this episode you'll learn how to focus on a mindset that allows for reality and emotion, while also holding onto the positive aspects of the situation. Many listeners will relate to Emily's 'month in the life' because your life looks very similar. 

If you're looking for relatability and some help with your mindset about your life of pediatric medical complexities, this episode is for you! 

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

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

Transcript

Speaker 1: 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by hope, is here for you.

Speaker 2: 0:23

Though we wish you didn't know this heartache, we're so glad you found us, so together we can walk this journey in hope. Welcome to the Empowered by Hope podcast. You have Emily Whiting here, your host this morning. Well, it's morning for me it usually is morning when we record, because that's the time we can get in before kids are up and moving. It's hard to snatch another amount of time of quiet at your desk, but it's not so quiet in our house. We might have a few interruptions as we record as Ms Charlotte is feeling quite sick and is up with me as well. So Mr Bluey or Miss I guess Bluey is a girl, right, the show is keeping her busy at the moment. But today we are going to talk about a month in the life of complex care, and of course this is from my perspective, and so there's going to be all kinds of different variations depending on diagnosis and the different needs and specialties for your kids. But if you are just curious, what a normal month in the life of handling the complexities of Charlotte's diagnosis, that's what we're going to talk about today, because I think from it you will gain some just insights into a lot of mindset things that can help you survive. What I would like to kind of relate to the relentless waves of. I imagine myself just kind of out in the middle of the ocean and we're just treading water and trying to keep your head above the waves. That's what it is often in the complex care world, and that's not doom and gloom. I don't mean that as a oh it's horrible. It's more just like that's just reality. It's just a constant wave after wave after wave of things that happen medically. And I'll go up soon to hear what I mean when I tell you about our last month, and this last month has been very typical for us. I mean, this is our life, this is very normal, and I think a lot of you will relate to certain aspects of it because it's very much your normal too, and so I think you'll get a lot of mindset things out of it. I think you'll also get a lot of relatability out of it, because if you're living this life as well, it's easy to look around you and see you know families going to pick pumpkins and get apples because it's fall right now and all these different fun things and a lot of those things get canceled in our world or can never happen because things just keep happening in the medical world. Now obviously we sneak in the fun when we can, but and I'll talk about that too because in the middle of our crazy week we also had a vacation, so or our crazy month. So you know, you sneak in a lot of fun where you can and when you can and you maximize those opportunities as best as you can and you just keep rolling with the punches. So I'm really excited about today to just share about our last month and see what resonates with you. I would love to hear in the comments or, if you want to reach out to us directly, what resonates with you, if this is similar to your life, if you feel like sometimes you're treading water and just getting hit with wave after wave. I'd be really curious how this sits with you.

Speaker 2: 4:03

So it all started back in. It was the third week of September. I was elated that, with the help of an amazing care coordinator, we were able to sandwich 10 different outpatient appointments in four days at a hospital that is managing, I would say, most of Charlotte's care, but they're four hours away from us and before we had the help of this care coordinator, we had been going down there once a month for two to three days each time to get in, you know, three to four appointments, however many I could get stacked. But now that we have that help of somebody internal in the system to help us with that scheduling and coordination, we were able to knock out 10 in four days. Now, as you can imagine, that was so exhausting. It was a lot of work. We had on top of those 10 outpatient appointments, we had blood draws, we had ultrasounds, we had x-rays and so it was nonstop. But it was really time well spent because, as many of you know, every time you get in the car and you haul your kid to a doctor's office, it takes an immense amount of coordination to manage between babysitters for other kids and our childcare and dealing with work and paying for the gas to get there and finding a place to stay if it's overnight. And we've calculated that it costs an average of about $400 every time we go on this trip, whether it's one night or more to go to this hospital four hours away. So it racks up really fast. So the more you can sandwich as many things in it once the better, not to mention the emotional toll of it all.

Speaker 2: 5:51

In this case we actually ended up taking my son with us. Suddenly, I leave my two younger kids at home with grandparents, dad and babysitters, whatever it takes to pull it off. But this time we decided to take my son with me because the emotional toll on him of us leaving is monumental, and I actually gave him the choice. He's four years old and he's old enough now and he's been through enough medical things that's all he's ever known in his little life to know what a week like this involves. And so I said you have the choice of staying home and having a lot of fun with grandma, or you can come with us and you can sit in the hospital with me and Charlotte. It's not going to be a lot of fun, you know you're gonna have to sit quiet during appointments and if you can't do that, you're gonna have to go home because mama has to stay focused and talk to these specialists. And guess what he chose? He chose to come with us, and so we took him with us, which of course, added a lot of it added some logistics and some it was definitely a little bit of added stress, but I would say that added stress of logistics was better for me to handle than it was for me to handle knowing he was at home, distraught that we were gone. You know, luckily my daughter was, she's two and she's like, yeah, okay, bye, mama, see you in a week, whatever. So that's great.

Speaker 2: 7:18

So then, at the very end of that week long of appointments we actually had, our last appointment was with one of the specialists who did Charlotte's surgery this spring. And I told him, hey, next week we're going on vacation to the ocean. And his eyes bugged and he was like she can't go in an ocean. It is not safe for her to be in an ocean, and I won't go into the details of why, but basically we're at high risk for infection in the ocean. And I was like, well, it's a little late now. Plain tickets are booked, house is rented this has been planned for over a year with multiple families, can't really undo it and he's like, well, I don't know what to tell you, but she can't go in the ocean. So, oh my gosh, so I go.

Speaker 2: 8:08

You know that was day four of the fourth day of appointments and I'm exhausted. I've come to learn that by the end of weeks like that, I'm just totally emotionally drained because I mean, as you know, those appointments require so much focus, so much energy, and they're big appointments, you're making big decisions for your kid, right? And to stack 10 of them in four days and to have two kids with me in tow the whole time, and then to hear this news that the very next week when we're on vacation, I have to keep my kid out of the ocean, which is the whole reason we're going to the beach, right? So I called my husband and I was like, what are we going to do? So we lamented about it for a little while and kind of hymned and hawed and we ultimately, over the course of a few days, decided you know what? We're just going to put together some protocol for vacation and we're going to follow it very carefully and we're going to alert everybody who's coming with us what that protocol is so they can help us, you know, make it happen. And then we're just going to have to take some risk, like very low risk, obviously, not let her get in the ocean, but let her get her toes in all that stuff. And I'll tell you what that protocol was. But there was so much to happen before we even got on vacation, so I'm going to write that down so I don't forget protocol.

Speaker 2: 9:28

Okay, so then that night I was still hoping to be able to drive home that night on day four, because I really wanted to be home with our little girl, our daughter. And you know, the other thing I've learned is, if I stay the night, one more night at this hospital well, it's not at the hospital, we were outpatient, but, you know, near the hospital then it ends up wiping out the like a half of the very next day because it's a four hour drive. So I was like I would much rather eat dinner, pile the kids in the car and see if I can get all the way home, you know, but the problem is, charlotte also has this daily treatment that takes an hour, and it has to be done not in a car, obviously and so we still had to do that treatment. It was like 530 pm, and so we still had an hour of treatment ahead of us. We hadn't had dinner and we had a four hour drive, and so I was still holding on to hope that we would go home, as we're sitting there at dinner, and then I just noticed the kids were like they needed to run, they needed to play, and I was like you know what? Okay, fine, we're just going to stay here. We're going to go to the playground, we're going to play, we're going to do the treatment, we're going to get a good night's sleep and then we'll go home in the morning Best late plans. So we go to the playground, we're out there for five minutes and Charlotte falls and gets like road rash on all four, you know, on her palms and on her knees, which is really not that big of a deal, right? Road rash, whatever, no big deal. Well, I didn't have any first aid stuff, which is so ridiculous for me to even say Like I had a whole suitcase of medical equipment but I did not have first aid. The hilarity of that is just, oh my gosh.

Speaker 2: 11:11

So it's 8pm at this point I put the kids in the car, we're at a Ronald McDonald house, which, by the way, I'll have to do a whole episode about them. They are so amazing and if you ever have the opportunity or need to stay at their house, I highly encourage it. Anyway, that's my little plug. We got in the van and I was like okay, there's a CVS, you know, two blocks away from this, the Ronald McDonald house. We're just going to run over there and we'll get some, you know, antibacterial cream and some bandaids will be good to go. So we get there. They're closed, okay. So then I look up the next place. It's like two more blocks down the road. Well, I didn't realize. It was in the middle of a university campus and school had just started. So you can imagine if you went to college, you know what it's like the first few weeks at around 8 or 9pm around campus on the outskirts when the parties start, oh my goodness.

Speaker 2: 12:09

So I have a four year old and a five year old, and the five year old has blood and scrapes on both hands and both knees and she's like limping, oh my gosh. And so I get to this. Next I went to Walgreens. We get in there, they have all the supplies I need, but then the four year old announces he needs to go potty and I'm like, okay, we're going to find a potty. And you know how it is when toddlers say they have to go potty. They have to go potty now. There's no waiting.

Speaker 2: 12:37

So I go to the pharmacist, because he's the only one visible in the area, and I'm like you know where is the potty? And he's like we don't have any public bathrooms, which I can see why, because there are parties raging all around. They don't want random people coming in using their bathroom. But I was like I have a four year old. Please do you have like an employee place I can go. He, you know he's not going to hold it and he just shrugged and said no, oh my gosh, you guys.

Speaker 2: 13:03

So then I haul the kids back to the car and I'm like buddy, you got to hold it, you got to hold it. There's a Kroger right across the road or right across the parking lot there was a grocery store. So I load the kids in, we haul it over there, literally driving through, people party and Doing things that I'm not even going to repeat, and I'm like, oh my gosh, I just have to get my kids bandaged and get back to the Ronald McDonald house. So we get into the store I did not feel safe at all with my little kids. We finally get into the bathroom, we get the first aid, blah, blah, blah. We get back to Ronald McDonald, we get her bandaged up, everybody goes to bed. I take a deep breath. It's being super transparent. I start crying, just like oh my gosh, will this week ever end?

Speaker 2: 13:48

But this is very normal for us. So then we drive home the next morning and we're so excited to be home. You know, we get home at like 2 or 3 pm. We're excited to just be with the family. We're outside, playing, whatever. Then it's bath night and I go to give the kids bath and Charlotte has no symptoms, she's totally fine. But as I'm bathing her I noticed that from the wound on her right Pom there are streaks going up her arm, red streaks, and I'm like I'm pretty sure that's not good. So I take a picture, I send it to our pediatrician on call and I'm like I Can wait till morning to deal with this. Right, they were like no, actually you need IV antibiotics in the next hour, so you need to go to NER. It's at this point like 9 30 pm.

Speaker 2: 14:40

So I I load Charlotte back into the van and at this point my four year old is so traumatized because he was so excited to be home in his bed and sharing his room with his sister at home, and so he's like I wanna go with you and I'm like no way you're not going with me. It is almost 10 pm, go to bed. So dad stays with the other two, I rush Charlotte off to the ER. I tell them at admission we're a high-risk patient, we have super medically complex background and also we were told we need IV antibiotics in the next hour. So it was the fastest ER visit I've ever had, because they ushered us right into the emergent wing and treated us immediately, which I so appreciated. But I was like I told the ER doctor, I was like this is not that big of a deal, right? I mean, it's just some streaks up her arm. He was like no, this is a big deal. This is like lymphenitis. This is not good if left untreated. So I'm like all right, fine, so we're here. So then we're getting ready for vacation, and now we have this lymphenitis infection and we also are told you know, the ocean is not safe for us on any given day, let alone when we have lymphenitis. So I'm like can we even go on vacation? I don't know. With all this going on In the background, I'm also trying to prepare for vacation by getting all the DME equipment durable medical equipment ordered so that it's all here on time to pack it, and trying to make sure I've got all the right specialty pieces that are gonna help Charlotte or our vacation be successful, right, and not lead us to the hospital, which I also reached out during that week of appointments to our complex care pediatrician and was like hey, what hospital?

Speaker 2: 16:33

I told him where we were going. I was like what hospital is the best for me to take her, if I need to, while I'm there on vacation? Which is a good pro tip. If you're ever going on vacation or leaving your home area, leaving your home medical base, for whatever reason, you need to have a plan of where you're gonna take your kid if and when something goes awry, because when you have a plan, things don't go awry, but when you don't, that's when things go awry, right, anyway.

Speaker 2: 17:02

So we decided to put together this vacation protocol. So we were like, okay, only up to her niece in the ocean. She's allowed to, like you know, stick her feet in. We kept telling her just stick your toes in, but you know, with waves that means it's gonna reach her knees, but at least it's gonna get nowhere above her knees. That was our goal. And in order to be on the beach at all, she had to have her ostomy bag on to protect the ostomy and keep everything as clean as possible. And then we decided, okay, there was a pool. It was like this really cool beach house that we went in with a bunch of families on, and so there was a pool. So we were like, okay, the other protocol is she always has to have that ostomy bag on to go in the pool. In every 20 minutes Somebody has to check the ostomy bag to make sure the seal is sealed well. We also were like, okay, we can't even stick our toes in the ocean until Tuesday, because we need a full 10 day course of antibiotics and we won't be done with it till Tuesday and we don't want her sticking her hands in the ocean and then we're dealing with some other horrible infection.

Speaker 2: 18:08

There were a few other protocol. I forget what they were, but anyway, all things to try to like. It felt super stringent, but it was also kind of a deal of like if we don't implement these, we simply cannot go on vacation or we're gonna spend it in the ER. So we gotta implement them. So we go on vacation. My son gets sick, of course he does, obviously. So then, oh my gosh, it's laughable, you guys. So vacation ended up being a delight. Honestly, I kept pinching myself wondering when the shoe was gonna fall. My son was sick, but it was no big deal, it was just, you know, normal sickness, whatever and then. But my daughter really never had any trouble and the ostomy bags worked really well and everything went smooth and her typical pain that she experiences was a little bit worse on vacation, just from all the activity, but not that bad, it was totally manageable, it was great.

Speaker 2: 19:06

So we get home, and we get home on a Saturday, and then Tuesday rolls around and Charlotte is at grandma's house. I'm trying to work on Charlotte's Hope Foundation things for my work day and I get a call from grandma and Charlotte is wailing in the background, just wailing, and I'm like, oh no, what's the matter? I know that cry, it's severe pain. And grandma says, well, I don't know what's going on, but the front lower part of her abdomen, right around her hip, she's holding it, she's doubled over, she's crying, she's been doing it for a couple hours. She won't eat anymore and really won't talk much. So I'm like, okay, well, that's kind of a new pain for us.

Speaker 2: 19:50

Normally her pain is in different areas. So I'm like, okay, what am I gonna do? So you know, typical me. I'm like it'll be fine, give it a few minutes, it'll blow over. Well, didn't blow over, so I'm like, okay, I will grab all my pain management plan stuff that I have here because we have a whole pain management protocol, load it all up and go to grandma's. Well, she's 30 minutes away, so I get over there.

Speaker 2: 20:14

I'm on the phone with a pediatrician trying to figure out like where do I go. Oh, and before that we actually had a complex care coordinator meeting on Monday. So that was the day before I forgot about that, which was amazing and I'm gonna have a whole nother episode on that later. But basically, after five years of begging, pleading, crying, sobbing, screaming, talking as kindly as I possibly can all the things that I could think of to as many people as I could finally, five years later, we were able to get our specialist team together for a virtual meeting to talk about the overarching plan for Charlotte's Care and hashed through different labs and different tests and surgeries coming up and try to streamline and coordinate some things, which was so amazing but, as you can imagine, also very emotionally taxing. So that happened Monday.

Speaker 2: 21:06

Then, tuesday, this belly pain starts. I call the pediatrician, I'm like I can come to you right and they're like no, you need to go to the ER, which I understand for sure, given all of our complexity too. But, as many of you know, I don't like going to the ER because it's like starting brand new with a bunch of obviously very well-skilled and wonderful doctors. But we have such a complex medical history, it takes them so long to catch up on what has happened and what all the risk factors are, that by the time like and then I feel like I'm kind of guiding and coaching at the ER of what it might be because I'm the one that knows the medical history the best, right, and so then it's just not great because it's like I would much rather go to a pediatrician who has history with Charlotte, who has been part of many of the appointments, has seen a lot of the discharge paperwork and knows the risk factors right. But there is great value, of course, going to the ER and having some fresh eyes too, because they're able to look at a bigger picture and not have kind of the blinders of what we already suspect to be the problem, right. So that's good. But anyway, I was just like I have to go to the ER again.

Speaker 2: 22:19

Going to the ER for lymphogitis was great because it was just like it was a very obvious problem. It was on the skin. I can tell you what the problem is, and so it's no big deal. You go in, you get antibiotics, you go home. But going in for excruciating belly pain is another thing, because we have so many things that could cause belly pain that are very unique to her, and so all the typical things like appendectomy or appendicitis, that kind of stuff is like well, no, not relevant for her Anyway.

Speaker 2: 22:51

So we go to the ER and, lo and behold, at this point it's like four hours into her being in pain, we get there and the pain goes away. She's super tired and weepy, but the pain's gone. So we get checked in and of course they don't see her in pain. So we're put on the like long wait list. So we have a three hour wait ahead of us. So I sit down. The waiting room was so full and many of the kids were pretty sick, so I'm like we're going to contract something here, we're going to be so sick. So I'm sitting there for about 30 minutes and Charlotte's perfectly fine. She's watching the show, she's chilling, she's talking, she's good. I'm like you know what we are not staying here. I can always just drive back when the pain comes back. I am not waiting for three hours where we're just going to get super sick, so we go home.

Speaker 2: 23:40

The very next day we drove an hour to another hospital system for two other outpatient appointments that had been scheduled long ago, and those appointments it was cardiology and nephrology. We were there from noon to five. It was a very long day, I know it would be. We had echoes, we had EKGs, all kinds of different tests, and I was thinking we should get a urine sample while we're here, because we didn't go to the ER ultimately and they would have taken a urine sample and maybe we have a UTI from vacation or something. I don't know. We were always high risk for UTI, but we had no fever and she was doing fine that day. So I was like, yeah, it's okay, maybe that pain is gone, whatever. It was so funny of me to have thought that, because then the very next day so let's see what day was that, I don't even know Wednesday, that's this week.

Speaker 2: 24:33

Then Thursday or Wednesday night we get home from the hospital, from being there all day, and she starts fevering. Of course she does. Anybody listening is like, yeah, obviously, of course she did so. Then I'm like, all right, we're just going to deal with this fever as if it's not a big deal. And then in the morning, because there was no other symptoms, she wasn't in pain, nothing else. So I'm like, in the morning we'll go to the pediatrician, we'll get a urine sample.

Speaker 2: 25:00

So in the morning I call a pediatrician. I'm like can we get in? No appointments available, you're going to have to go to urgent care. I was like, no, no, I can't do that. I'm going to need some help here, because that, no, we're not doing urgent care. I'm not doing ER. I'm not contracting a new illness. Help me please.

Speaker 2: 25:19

Plus, collecting a urine sample is a very tricky situation in our case. So you really need people who know what they're doing and people who know Charlotte, so they bless them, squeeze us in. I'm so grateful. So we get in Now. In our case, getting a urine sample takes a solid hour, sometimes longer. So we were there for quite a while and made it through, got back home waiting for the results.

Speaker 2: 25:47

Her fever has been high for the last two or three days, but no other symptoms, so very strange. And so been on the phone with urology and pediatrician just trying to decide, like, do we start treatment? To be proactive, because cultures from urine samples take three days to come in and so we don't really know. But from preliminary results it doesn't look very conclusive. So that's been the last month, guys, that's one month. But here's the thing that is so normal for us, so normal and I'm guessing, for many of you it's very normal too. Like, honestly, if I were to take a snapshot of any one month of the last five years, this is how it would look for different reasons it would have been a surgery, or it would have been all these outpatient appointments, or it would have been, you know, all these illnesses. I mean, it's just constant.

Speaker 2: 26:39

And so what I have come to learn is that mindset is key, first off morning when you need to mourn, which we talk about that all the time, ashton and I do. Like that night at Ronald McDonald, after I finally got the kids bandaged up and we got out of the party scene and we were in bed and I cried. It was like, okay, my body needs to release the stress and I'm just going to let it out right, and I'm just going to let all the thoughts that are in my head come out and I do a lot of prayer journaling. So I got out my prayer journal and I just poured out my heart to God and to my prayer journal and to my husband, just like, blah, right, and that's totally healthy and it's totally fine. It's totally good because if you're constantly like, oh, it's all fine and dandy, you'll go crazy because your brain knows it's not all fine and dandy. But there are little things you can do that shift your mindset. That helps so immensely. Like you know, on Tuesday, when I'm trying so hard to finally catch up on some work with Charlotte's Hope Foundation and I get a call and now what I'm supposed to be working on is, you know, out the window again for the millionth time, it's just been like, yeah, okay, well, the whole purpose of Charlotte's Hope Foundation is to serve as parents who have children with medical complexities, and right now that's me. So that's what I'm going to do, you know, and I'll get to the work. When I get to the work, Like at 6am, when I try to get up before kids get up, but then they get up with me so they're watching Bluey. But you know, a lot of it is just laughing about it.

Speaker 2: 28:11

Like that night we had to go to the ER right after getting home from being gone, for you know, those four day appointments. You know I remember my husband. He blessed him. He was so tired and he was kind of you know, he had been running the household all week by himself with the baby and he was stressed and he was just like ready for everybody to be in bed at our own home. And I totally agreed and he was like, really, you're going to go to the ER now. And I was like, yeah, you know, this is the way it goes and I'd rather go to the ER now than find ourselves hospitalized like get the treatment now and deal with it and come home by 2am Then be hospitalized tomorrow because we drug our feet and now we're going to be in the hospital for four days. Right, because that's how it goes.

Speaker 2: 28:59

So a lot of it is just like, yeah, this is the life, this is the way it goes. So here we go, and that sounds very flippant, but it takes a while to get there, for sure, you know. But I think I've come there out of necessity, out of survival. It's just, this is the life that we have and there's so much joy to be had in the midst of it. I was talking to a family member the other day and I said something about you know, that'll be okay or whatever, I don't know. She was like, oh my gosh, you're so optimistic and I was like you know, I have come to decide that this is the mindset that is going to get us through and there is so much joy to be had in the midst of the chaos.

Speaker 2: 29:46

Once you decide that life is just going to be chaotic and life is going to be full of ups and downs and IV pokes and tears and infections and acatheters and all that stuff, then you're just like, yeah, okay, so how are we going to find joy in it? So like we're singing the ABCs and tying in homeschooling while we're collecting our urine sample on the potty. You know, the other day, and we're, I don't know like. I feel like I've bonded with my daughter so much because she and I sit in waiting rooms a ton, just her and I and I've gotten to bond with my son a bunch because he's constantly, you know, getting total along with us. And then my daughter it's been really fun to watch, like when I do get to be reunited with her in and out of these things. Our time is so special because we know that it's not a given right.

Speaker 2: 30:38

So there's a lot of things that you can just find little. And it's not telling yourself that everything's okay because it's not, and that's not true, it's not okay, but it is just finding the little things that are really good. You know, like like, if we get to go to the cafeteria in between outpatient appointments and get a donut, I'm like it's the best day ever we got to have a donut. And Charlotte's like yeah, you know, just finding little ways to make it fun, to smile and to laugh in the middle of things. So I'm guessing some of this is relatable to you guys. Hopefully to many of you. It's very, it's like more than you're used to. That would be so good. I hope you can't relate, but I'm guessing many of you can, because we service, you know, parents who have children with medical complexity.

Speaker 2: 31:29

But I also think that when you have the opportunity to enjoy life outside of medical things, that you just got to maximize it. You know, like when we were on vacation, just enjoying it and trying really hard to be mindful about not worrying about when the next shoe is going to drop, which is very easy to do. You know, like today I'm kind of wondering we're going to have to cancel some. We have a birthday party we're supposed to go to obviously going to have to cancel that, going to have to cancel a few other plans we had, can't go visit the family that we wanted to visit, all that stuff. So I find myself worrying, like, oh my gosh, we're going to have to go to the ER today. Oh my gosh, my husband's not here this weekend. What are we going to do if that happens?

Speaker 2: 32:12

You know, and it's okay to obviously have those rational thoughts of like, okay, we have to have a backup plan, that kind of stuff, but also just not letting my mind run because, yeah, that fever and that excruciating pain could mean something super severe, or it could just mean she has some nasty virus that's going to work its way through our household like any other normal family, right. And so you really have to stop yourself and be like, okay, don't be a runaway train, think about all the possibilities, yes, but don't just assume it's the worst, right. And not getting ahead of ourselves living in the what ifs versus the what is right now. That's something I have to really work on is just constantly bringing myself back to the reality of what is right now, not what's going to happen tomorrow, because, as you can see from the last month, there is no predicting what's going to happen tomorrow. There is absolutely no predicting. And also, if I try to predict, I will just burn out from exhaustion of the worry and the fear of what could happen, because our syndrome has a lot of possibilities of things going really wrong, it's true.

Speaker 2: 33:20

So you just learn to maximize the opportunities in front of us. You know, like today I don't think we're going to be able to go anywhere public, so maybe we'll go on a hike, maybe we'll go to the woods and take a stroll, or, if I have any energy left, I don't know, I haven't gotten much sleep in a while, as you can see, for obvious reasons. But I've also learned staying at home isn't always great either, when we're all exhausted, because everybody's crabby and it's just not great. So I'd rather get us out and go do something. So, yeah, just like maximizing opportunities. Like maybe we're going to make cookies this morning, maybe that's what we're going to do, or maybe we're just going to zone out to Bluey all day long and I'm going to have to battle with my internal critic and tell myself it's okay, because everyone is not feeling great and Charlotte is really sick and I'm exhausted and sometimes you just have to zone out to Bluey. So that is a month in the life of complex care pediatrics.

Speaker 2: 34:17

Now, if you are early in your journey and you're listening to this and you're like, oh my gosh, is that going to be my life? Maybe it might be, I don't know. But if it is, don't panic, we're here with you. We're going to be there with you. We're going to hold your hand and guide you. We're going to be constantly putting out new content on this podcast to help you learn how to navigate it.

Speaker 2: 34:39

It will be okay and there is so much joy to be had in the midst of the chaos. There is so much joy to be had in the midst of the chaos. I'm going to just say that over and over because I think it's so important for us. I'm going to write it down. There is so much joy to be had in the midst of chaos and I have to remind myself that a lot, and I have to remind the people around me a lot too, because a lot of times I'll get the comment of like, oh my gosh, when's it ever going to settle down for you? And my answer is it won't. It's not going to, and there's a lot of joy to be had in the midst of the chaos, because that's the way it goes, and I can either get bogged down and super depressed and that would be warranted for sure and I could get really down and out about it. But here's the thing my daughter and my family needs me, and for their health and their well-being and for my own.

Speaker 2: 35:35

I have to focus on the fact that there is so much joy to be had in the midst of the chaos and also on the great privilege I have that God chose me to be Charlotte's caregiver. Me why me? I don't know. I'm so underqualified, but he chose me, and what a blessing that is. He could have taken her to heaven and, quite frankly, there were many times we thought he would, and sometimes we even wonder how and why did our daughter get to live and others didn't? I don't know, I'm not sure, but I do know that I am honored and privileged that I get to be her mother, that she is here with us. What a blessing. And, yeah, there's a lot we have to navigate, but at least we have a lot to navigate, right? So I hope that that is uplifting to you. I hope that that resonates with you. If nothing else, if you're listening to this and you're like, wow, I feel really guilty for not having that mindset, don't go there either. Don't go there either. It's okay to have felt all the things you have felt, and I just want you to hold on to the fact that there is so much joy to be had in the midst of the chaos. And you know, this is a month in the life of Charlotte, of our family, of Emily, and it's probably a month in the life of many of you. And so I would love to hear from you what are your mindset tricks, what are your tips and tricks to help you navigate the chaos and just roll with the punches?

Speaker 2: 37:08

I know many families who are in and out of hospitals more than we are right now, who have more well, maybe not more specialists I don't know anybody with more specialists but who have more. Like severity of complexities. Right, a lot of our things are very complex, but they're long-term complex, not like acute complex. Those are two different things. So I would love to hear from you. Please message us at contact at charlottehopefoundationcom. Noorgcomorg. I thinkorg I'm a little rusty. As you can see, I've been away from my desk for a little while managing some medical things, so please message us. Comment.

Speaker 2: 37:47

We want to hear Subscribe to the podcast. Share it with your friends, please. We want to get this podcast out to as many families who we can support as possible, and we would just be elated if you would share it with them. Also, I want to mention that the success of this podcast is due to largely due to an amazing company called Cash Flow Podcasting. They are the ones who are powering this, bringing it to all of you, making it sound professional. They're amazing. So we are so grateful to Cash Flow Podcasting and our board member, ben Kruger, for making that happen.

Speaker 2: 38:26

Also, I wanted to let you know we actually have a newsletter coming out with lots of updates about what's been going on with Charlotte's Hope Foundation, and if you're not already on our mailing or emailing list, please go ahead and do that. You can either email me your mailing address and I will add you to the physical mailing list, or you can go to our website at charlottehopefoundationorg and you can subscribe. You just scroll down to the part where you submit your email address and your name, and then you'll be able to have access to podcasts every week as they come out, and you'll also get our newsletter when it's out, which should be in the next couple of weeks. That's very exciting. All right with that. I will leave you with the idea and the concept that there is so much joy to be had in the midst of the chaos. You are capable, you are equipped and you are not alone. Together, we can do hard things for our children.

Speaker 1: 39:28

If this episode connected with you and you want to hear more, be sure to hit the subscribe button.

Speaker 2: 39:33

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's fair.