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
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Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us Together. We can walk this journey in hope.
Speaker 2:Hello and welcome to the empowered by hope podcast brought to you by Charlotte's Hope Foundation. We are together, the dynamic duo Ashlyn Thompson and Emily Whiting, and it is a crack of dawn, and that is just the way we end up getting our best podcast cranked out, as if we do it before children are up. So that is very exciting. And today we have noticed that our very first episode, which was very intentionally titled well, I forget the exact title, but basically it was like your child's diagnosis is not your fault. Maybe that was the title.
Speaker 1:That is the title.
Speaker 3:That is a good title.
Speaker 2:We titled it well because I can remember it. That's excellent and it has gotten the most views, the most hits, probably first and foremost because it's the first episode, but also because it strikes a chord where everybody. One of the very first experiences we have when we receive the news that our child is not well, is this guilt of this, like it's my fault. What have I done that has caused this? And something we've noticed that walks hand in hand with guilt is this comparison game. And I think you'll know what we're talking about very quickly, because it's very easy for us to start comparing out of jealousy, imposter and same diagnosis. So what do I mean by that?
Speaker 2:We can see other children or other families who are healthier than ours is at the moment, and we can feel jealousy, right. Or think, oh, why isn't my child healthier? Why isn't blah, blah, blah, fill in the blank. Or the imposter syndrome where, oh well, I shouldn't be so upset about my child's illness when there's so many kids who are sicker than mine. Or we have the same disease comparison, where we look to those who are on, you know, having the same disease as us or the same diagnosis. And of course, there's a spectrum within every illness and diagnosis, and so it's very easy to think like, oh well, we're not as bad or we're, we're, we're, you know, sicker or on the far end of the spectrum, and really struggle with that.
Speaker 2:And so we are going to spend this morning or today, whenever you listen to this today, really diving into those thoughts that we have and what do we do with them, because they can induce a lot of guilt and that's why it's very related to the very first topic we ever recorded, because a lot of times we have these thoughts of jealousy or imposter or same diagnosis, comparison, and then the immediate feeling after that is guilt.
Speaker 2:So it's going to be a really fun conversation because this is something Ashlyn and I both struggle with very much, but I think we're getting really quick and better at how to address it, how to not let it become a negative but just an acknowledged, you know, thing that's in the room and deal with it. So with that, ms Ashlyn, before we dive into all that fantastic content, we haven't been together for a while on this podcast, which it's always amazing and explosive in the best of ways when we're together. So share with us a little update of what's going on in your life, because I'm sure our listeners are wondering what is the update of Ashlyn and Emily and Charlotte Tope Foundation? Well, how much time does everybody?
Speaker 3:have Not enough time Right, just kidding.
Speaker 3:Not enough time for this episode for sure. But gosh, emily, there is never a shortage of things going on. I think I told you the other day that if I were to ever write a book which is semi unlikely because I don't think my ADHD has any interest in sticking to something that long besides Charlotte Tope Foundation it would be titled and then dot, dot, dot, because I feel like I'm finally, at 35 years old Dare, I say, learning to accept that life is going to continue having ups and downs all of the time, and by accept that, I mean I think I've been waiting for this time in my life to open up, where it's just like clear pastures, to run things, to be smooth, right, nothing in our way for a while, just easy sailing, and I think by living in expectation of that time coming, it keeps me from being in the moment when I can't experience things are good despite the chaos, and so I think this is a valuable lesson Not my favorite one to have learned, but I think it's something that's hopefully going to truthfully help me to enjoy more of my life moving forward, because there's big things that pop up all the time. There's little things that pop up all the time, and sometimes those things are really great and sometimes those things have been really, really challenging and my family has definitely been in a season of challenges that are beyond.
Speaker 3:You know, beyond Emory, it's not just you know what goes on with her and you know the things that we navigate with her medical journey which, you know, currently thank God we're very fortunate have been fairly minimal for the last couple of months, you know, since we've gotten through the major recovery portion of her surgery earlier this year. But anyway, so just navigating, learning to enjoy where I am, no matter what's going on around me. You're a very key part of that, emily, because if I can't be present with you then I'm really good at floundering and spiraling. So thankful for great friendships. I know you and I talk a lot about the importance of having that really strong circle in your life, building that support system, and that truly is my anchor, along with God at the center of it. So grateful for that, for keeping me from flying away with the wind.
Speaker 2:Well, I will second the fact that you know, I mean, I before you and I came together to launch this baby Charlotte Tope Foundation. I had this. I knew like this vision was festering in my brain and growing and growing, and growing, but I didn't know which way to go. And I didn't, I was just like kind of just waiting for it to all make a little bit more sense. And then you entered into my life and we started brainstorming and quickly it became an entire foundation with a nonprofit, you know board and blah, blah, blah, blah, blah, and it's just amazing. I just second the fact that when we are united it is, like I said, explosive.
Speaker 3:Yes In the best of ways.
Speaker 2:Yes, in all the good advice, your fire in my direction and then we take off. Yes, I got plenty of direction, but I needed your fire.
Speaker 3:And, you know, switch those words around. And that's why I needed Emily because all the fire. But I needed the Canadian fire department to help guide the fires right, to not put up everything. One of those more purposeful fires. It's what we needed help with, and so God brought us together. Yes, he delivers.
Speaker 3:On a lighter note, I thought I would share something really cute that I've been doing with Emery for probably oh probably the last three weeks or so, and I highly recommend this to anybody listening, whether you do it with your children or you do this for yourself, honestly. So in my family, we've been working a lot on just individual health, right, working on learning to take better care of ourselves, so that way, you know, we can be a stronger family, because if you're not taking care of yourself as much as I know that, you know we all talk about struggling with self care. I think I'm really learning what self care is right, and part of self care is actually taking care of the thoughts that go through your head and not letting them, just not letting them control how your day is going, just being aware of them. So, anyway, we I started doing this little mantra with Emery, and Emery being two years old. She is my little sing song bird. She loves singing, so whenever we do this she kind of sings it at the same time. It's so cute.
Speaker 3:So what we do is and I've been doing it multiple times a day, just whenever it hits me, but we'll say I'll, you know she'll repeat after me. I say I am brave, and she'll I am brave. And then I smart and I am strong, and she does like the big, like arm flex, and then say I am beautiful. And her beautiful sounds like I'm booty full, which she does. That very cute little booty. You know how, like the diaper booties they have when they're filled by. Oh, it's the best, so cute.
Speaker 3:And then Jesus loves me and so I can't even pronounce Jesus loves me the way that she says it. But she's getting it and I know Jesus hears her. So it is the cutest thing that she gets the. Now that we've been doing it for a while, the coolest thing I've seen is she gets the biggest smile on her face. And then last night I've been working on this past week trying to remember to at least once a day have her do it in front of a mirror. So she's looking at herself when she's doing it and not just looking at me. And last night, we did it.
Speaker 3:And then, you know, she has this big smile on her face and last night was the first time she goes Mommy again, so she wanted to go through it again and I was like, oh, this is so sweet. But I have to tell you like, even just listening to her say it back, I'm like this is such a powerful little moment to have. And you know, I think that it's just something that's so simple and, honestly, it's fun, like I feel like I'm really connecting with her at a deeper level and I also feel like, you know, it makes me feel like a good parent moment and it's really easy to do and I think I need to hear the words to honestly, even when I'm saying it, I'm like Okay, now I'm trying to be more mindful of when I say it, like Okay, I shouldn't kind of, you know, think about this for yourself too, because these apply as well. And it's funny, earlier this week I had to take Cole to his play therapy appointment because, you know, trauma is a wrecking ball and there is always collateral damage around, and so we are working through some that our oldest son, or our only son, cole, who's six years old, that he has experienced, and so I had to.
Speaker 3:He had an appointment with the therapist by himself that day, so I had about 50 minutes to kill and I was starting to sit in the waiting room and I was like it is a beautiful day, what am I thinking? So I was like I have to get outside. So I went outside and I went for a walk and I could just feel my anxiety, like just that buzz, that tightness in my chest and not really taking deep breaths, and it's like Okay, I'm. I always tell other people they should, you know, be mindful of their thoughts. So time to apply to myself. So I literally for 45 minutes, walked around trying to only say it inside my head so people wouldn't think I was a crazy person talking to myself. But I know there were a few times I was definitely moving my mouth.
Speaker 3:But I just totally talked to myself all the time, all the time, which isn't a bad thing at all, it's a good thing, it's very healthy. Yes, but literally for 45 minutes I walked around saying I am calm, I am capable, I am doing a great job, and I said that over and over and over and it probably took 20 minutes before I started to actually feel a little calmer and then started to have more positive thoughts like Okay, ashlyn, maybe it's not easy, but it doesn't mean I'm not capable. Like I started noticing the conversation in my head started moving from being so judgmental and critical of myself to starting to tap into those positive words I was saying, because I will tell you this, I was not feeling any of those things when I started saying it and I was not believing it and I was kind of like what is the point of saying these things? I don't believe them. I know I'm lying to myself, but it is true. I guess therapists do know what they're talking about.
Speaker 3:Sometimes, if you say it enough times, then your brain is eventually going to you know, start to listen to it and then start to Change its way of thinking, to adopt that that you've got process. So I am trying to work on using that more consistently. I will keep you all posted to see if it does, I love it. But yeah, just for fun. Today, if you're listening to this, you know, feel free to borrow mine or borrow emery's. Actually, I'd love to hear from you all what's if you have when you already use, or if you come up with one right now, let us know what it is. We'd love to hear that.
Speaker 2:Yeah, I love it. One of my girlfriends was telling me and I wrote it down on a Note card but have not been great at following through but she, oh, this is horrible. I can't remember what verse, but I think it's Ephesians where it's like a Bible verse or chapter about clothing yourself in the armor of God, and every morning when she dresses her baby, she recites these like you know, put on the helmet of dignity. I'm gonna totally butcher it. I don't remember what the verses are, but basically it's like helmet of dignity and chestplate of whatever Humility, blah, blah, blah, blah. But it is so powerful, I'm totally butchering it. But I'll look it up and put it in the show notes. I'm gonna write that down so I don't forget show notes.
Speaker 3:Yes, I would know this. This sounds like something good to put in my closet.
Speaker 2:Yes, and so honestly it's like I should pay sit up to my mirror as I'm getting ready of you know, like Anyway, and it's super powerful. And she said her daughter always gets her kick out of it and gets all giggly. She's not quite at the level of like old enough to be able to recite it back, but I'm sure by the time she is she'll know it by heart, because her mom does it every single day.
Speaker 2:Which is really cool and it's very similar to the mantra you're talking about. So I would love to what will? I wrote down what we need to put in the show notes, and one of them is the mantra you're telling emory, so that we can all do the same thing. That is awesome. Okay, so you only have a few things going on. You know, totally know, life.
Speaker 3:Oh, I'm also getting a puppy. I'll let you all know how that goes next time I.
Speaker 2:Was telling her before we hit record. I was like Ashley, and you do realize that's like a baby, right like the level of care, not quite to the level, but really close. But but you were all in, so okay, here we go.
Speaker 3:Pray for me, but I have, I have good feelings about this. I have good feelings.
Speaker 2:Okay, I'll trust your feelings. So okay, our world, we started homeschooling.
Speaker 3:I'm crazy. I I forgot that was starting already Wow.
Speaker 2:Yes we're in week two and it's that's a honestly. I'm gonna write that down as another episode. Also, while you were talking, I wrote down we need to do another episode about Accept it like really just focus on acceptance of just the fact that life is what it is and what that does to how to get there and how it revolutionizes your experience of all the crazy. Not that I'm promoting homeschool by any means, but the reason why we Arrived to the conclusion that homeschool was best for us was due to a compounding list of of Challenges that was presented with the typical school schedule with our medical Schedule on top of it, and it just got to a point where, like we kept, I was kept trying to make it work For us to go to the normal school schedule and, you know, go to a physical school with typical teachers, and it just was not working. So that's yeah, I'm that's all I'm gonna say for now, because that's a whole nother episode in and of itself.
Speaker 2:But I know many of you listening who have children with medical complexities. You recognize that it is really hard to Go into a system that is set up for the average child and try to get your anything but average child in the best of ways, right, like I keep hearing that we're below average and this and this and this and this, and my brain is like, yeah, but we are so above average and just like we're not even on the scale. We're just not even. There is no scale for us. You know what? In a whole different world.
Speaker 3:I heard the phrase the other day and I'm pretty sure I've heard it before, but for some reason I heard somebody say this the other day and I was like I'm going to work really hard to adopt this language as part of my regular usage. And it's just using the words different abled, and yeah, I loved that because I was like huh, because then, well, it takes the comparison out right, it's. It's literally what reality is. There's not somebody who's you know has better abilities or lower abilities. We all just have different abilities, and that includes our children, no matter what they're facing. And yeah, just like you have different abilities, that you have the ability to homeschool, which I just still find absolutely amazing.
Speaker 3:It's one of those things I was actually talking to you about, that I was considering, but my confidence is not there yet, myself very, very Uncertained. But I will say that Cole continues to show me signs that it's not something I'm ready to rule out yet. Yeah, but what does training look like? To like or I think you said you had training the other day what does that look like to become? Oh, there are a lot of resources out there.
Speaker 2:Well, that training was just virtues training, which is a specific training set up to help, like so, within a co-op, which is where homeschool families come together for whatever set amount of time that they so choose and do school together, basically, and so it was a training specific for being with other children. It's like basically a way to make sure we keep our kids safe. So that wasn't really a homeschool training so much as just child safety training. But yeah, there is no training. The training is you do a heck of a lot of research until you feel confident. That's the training.
Speaker 3:You are definitely prepared to research. So at least you've got that down. I'm sure you're gonna do a fantastic job, though. Seriously, you have such an Incredible heart in mind for this.
Speaker 2:It's been a lot of fun and I've already seen a lot of fruit from it, of just you know. Like you know, we did school yesterday morning and then we were off doing a bunch of other stuff, and then that afternoon I was so exhausted for a million reasons and I just laid on the couch for like 20 minutes. My body just couldn't keep going. And I can. I have my eyes closed and I can hear Liam, my son, building the ABCs out of his blocks on the floor, singing it and going, oh, that's the beat, but but be, and I'm like that's so cool. I taught him that this morning, you know, which was really fun.
Speaker 2:So that's really anyway found a lot of, a lot of benefit already, but um, and that's all, that's a whole nother topic. But yeah, so that's been an adventure. We also what else? There's so many things.
Speaker 2:We are gearing up for a really big week-long stay at well, we're not inpatient, but outpatient week of Appointments and it's going to be four hours away from our home and we're trying to decide are we gonna take Liam, are we gonna take Eden? Are we gonna, you know, are we gonna take the other kids or are we going to just go and leave the others at home? But that that induces its own set of issues and so just working through how we're gonna manage that. But I think we have in a four-day window, like I don't know, almost 12 appointments, probably maybe 15. It's gonna be crazy town, but I'm really excited about it because we went from going down there and doing these appointments you know, having like two or three or four at a time to now We've got them all stacked up and hopefully we don't have to go back for a couple months, which would be fantastic.
Speaker 3:And only does it answer. Let me back up. So there's more than four appointments that week.
Speaker 2:I, oh yeah there's like 12 to 15.
Speaker 3:Oh my gosh.
Speaker 2:Just I like to point out these moments and that's not all our specialists, that's just a handful Wow.
Speaker 3:But go ahead. Sorry, I just cut you off. No, I mean okay. So now I am going to ask you another question, friend. So when you said you were talking about, you know, do you take your other children or do you not? Do you ever ask yourself the question? Literally remove guilt from even being allowed to enter your brain right now. What would be easiest on you and Dan?
Speaker 2:Oh, yeah, for sure. But then you also have to consider, you know so my son has been left behind for more appointment weeks than that, like than I can even count, and at this point he knows when she goes, traumatic things happen and he cannot stand being separated from her when he knows that's happening, or really ever. So trying to factor in how he's going to handle it because, quite frankly, when we go through weeks like this, then we go through seven, two to three weeks of his behavior being out of control because, he's like dealing with the emotional weight of having been left behind.
Speaker 2:So, honestly, I think it's better to take him. Big question is then what about the baby? So yeah, and he's old enough now where I can just be like, look, if you're coming with us, you have to recognize that means you're going to have to sit still through a lot of appointments, and if you can't do that, somebody's going to have to come get you and take you home, and the thought that that's punishment is just like that's reality. If you're coming, you got to buckle up and join the way of medical appointment life. So right, we'll see how it goes. But yeah, it's, you know, factor in.
Speaker 3:I wonder if child, is child life, supposed to help any?
Speaker 2:you know that's a good point. I need to reach out and ask for them to pop into at least a handful of appointments. Write that down right.
Speaker 3:Because I bet if they know if Liam is going to be there, then like yes, they would be their quote unquote for Charlotte. But I remember when Emery was in the hospital and even though she was too little really for child life, the first time since they knew the coal was there, they kind of were able to like do something, so that way he was impacted positively by it as well.
Speaker 2:Yeah, for sure, yeah, and that that helps everybody, right? I have learned that the best toy to take for outpatient appointments literally buckle yourselves up for this, guys painters tape, seriously.
Speaker 3:And we're asking you right now will you present the picture that you took of yourself with painters tape all over you at one of Charlotte's appointment, and that's going to be our episode photo.
Speaker 2:Oh my gosh. It's so good too, because getting all tangled up in the comparison and guilt, it's all relevant. Yes, okay. So we brought painters tape. Actually, this was my mom. She packed it for Charlotte the one one trip. She's been fantastic.
Speaker 2:This is another thing. You can ask your friends and family if they say how can I help? You can be like make us a travel kit of toys and games and snacks. It's fantastic. I like that Because I don't know about you, but I get stuck in the rut of the same things that I bring and my kids get really bored with.
Speaker 2:So when grandma packs a bag, it's all new things and it's very fantastic, even if it's just cheap, dollar, general, you know, whatever, it doesn't matter stuff to keep them busy, but anyway. So she packed a roll of painters tape because she knew my kids loved it, and so we were in an hour appointment and Charlotte literally taped me from my ankles all the way up, but I could keep talking while she did it and she was so occupied. The doctors and the nurses thought it was hilarious, but I was like, look, she is busy, she's not destructive and I can pull it off super easy and it's fantastic. So, anyway, okay, and she was not distressed. Yeah, she was having the time of her life. The doctors were like looking in her ears, listening to her heart, the whole thing, while she was just taping me up Okay, really quick, because we got to get into our content here. No, right, we should have just done an episode on catching up.
Speaker 2:But so, from a Charlotte's hope standpoint, we have a ton going on and if you want to know more details of what we're doing, we actually have a newsletter coming out in the coming weeks.
Speaker 2:I just have to get it off to the designer, which, if anybody has designing skills and you want to design our newsletter for us, please reach out.
Speaker 2:But we have a newsletter coming out via mail and email to anyone who wants to keep up with all like the business side of things and also, you know, all the outreach, all of it. So I'm very excited about that, and if you want to be added to that list, you can contact us at contact at charlotte's hope foundationorg and send us either your email, if you want to be an email, or send us your mailing address and we'll get you either or both. You can also go to charlotte's hope foundationorg and subscribe to our podcast, and then you'll automatically be added to our email list and so you'll get the newsletter. So that's very exciting, and we're also starting to get the preparations pulled together for our celebration of hope next spring, which is going to be a very big fun in person celebration event of all the incredible things happening with Charlotte's Hope Foundation the families were getting to impact and interact with. So stay tuned for more on that. So, and and this is like one of the biggest things.
Speaker 2:And then so we aired episode 21 of when I revealed that we learned a diagnosis for Charlotte, because, if you're new to this story, we did not know a diagnosis for the first five years of her life and it was just this spring that we got a diagnosis, and it's what they call ultra rare. So there's nine cases documented around the world with our disease called heart a car syndrome. It's a med 12 gene variant and since we aired that episode and then we had a news what do you call it?
Speaker 2:A story ran by our local news outlet. That, of course, is online. So since then we have had several parents who have Googled heart a car syndrome when they receive the new diagnosis and they found the news article and then they found our website and they found that podcast and have reached out to us and you know it's been incredible. So at this point we went from knowing about nine documented cases to we've added five. So that's exciting, exciting and also heartbreaking. You know, I'm really sorry, of course, that anybody has this diagnosis at all and also grateful that we are starting to form a community, because there was no such thing and all these families have been floundering on their own with this very rare situation. So very excited that Charlotte's Hope Foundation we're not a diagnosis specific organization by any means, but it's just exciting when we can foster that unity and community around, whatever the issue is. So that's the update from my end. Just a few things, okay. So comparison and guilt how do we even begin, ashlyn? There's so many things.
Speaker 2:I think you know when you start out in this situation of having a diagnosis for your child or you know, I don't even know how to put this briefly.
Speaker 2:We got to find a way to term it.
Speaker 2:But basically, if you're in our shoes, where you were undiagnosed but clearly there's huge problems, right this your brain immediately can go to. You know, you see a mom walk into the OBGYN while you're sitting there too, waiting for your ultrasound and you can't help but wonder like, does she have a healthy baby? And then the immediate jealousy of that, like I wanted a healthy baby, I wanted a healthy pregnancy, or I. You know I'm in the NICU and you see a baby walking in a stroller outside the hospital when you're exhausted and you're walking back to the Ronald McDonald house or whatever, and you can't help but think like I want my baby to be with me, but they're not, they're in an isolate right. And so then following that thought almost immediately is often guilt of like, oh, I should be happy for that mom, I should be happy for that dad, I should be thrilled, you know. And how dare I feel that way? To varying degrees. So I think this comparison problem affects us all from the very get go of realizing we have a less than healthy situation.
Speaker 3:Definitely. I think earlier we were calling this more a comparison trap, and I want to make sure that we set the stage at the beginning, now that we're diving into our topic, now that we're 30 minutes into the podcast. Remind me to add up to the show notes.
Speaker 2:We'll stick in the show notes yes, if you want to go straight to the content, go to minute 29.
Speaker 3:Yes, so but I think it's really important to acknowledge that, just like feeling guilty, just like feeling jealous, it's literally a feeling.
Speaker 3:These thoughts are going to enter your mind and it does not make you bad or doesn't make you wrong for having these. So what we're going to be consistent when we're talking through these different parts of the comparison trap we can fall into is, first and foremost, do not make yourself feel wrong for having these types of feelings and thoughts. They are literally out of your control. What we can do is learn and practice becoming mindful of when these thoughts and feelings enter our head and learning to take a moment to pause and explore what you're actually feeling, what is behind that thought in that moment. Because if we take that second to look at it, I'm guessing 98% of the time, maybe even 100% of the time, we're going to find that there's so much more under the surface level that then you can find that grace for yourself.
Speaker 3:Because if anybody else was explaining to you those feelings and what was behind them, you're most likely going to find yourself saying well, of course you have that feeling, of course that thought entered your mind. There's nothing wrong with that. I would have felt the same way. So learning to be mindful enough to take a beat, to be kind to yourself, is what we can do. We don't want you to think that we're telling you don't compare, because that's like saying don't breathe because, girlfriend or boy, if you're listening, you will compare.
Speaker 2:Yeah, and I mean, like we said at the beginning, we both struggle with this. Honestly, I struggle with it on a daily basis, but well, struggle is a strong word. At this point I think I'm getting a lot better, that it's not necessarily a struggle. The thoughts enter my mind and I go, yeah, of course you had that thought. And then you're like, huh, okay, well, nice thought, bye-bye, thought, you know, and we move on. I'm like, well, and I'm not saying I'm a pro at it.
Speaker 2:There's definitely times and I gave you an example before we hit record where I'm still kind of beating myself up over a jealousy thought where I compared myself to, how you know, another mom thought she had a bad diagnosis and then it was confirmed that it was actually gone, like the problem just disappeared. And my you know, and it kills me that my first thought was why does she get to have the instant healing? And we don't, right. And then, of course, it's immediately followed with I'm so happy, like that's such good news, that's so fantastic. And then the immediate next thought is how dare I not initially just celebrate, why would I possibly compare?
Speaker 2:But then if you take a step back and you're like, well, of course you did, emily, because your whole life got totally upended, rerouted and blown up and started all over in this route you never, ever wanted, wouldn't have chosen for yourself. So of course, your first thought is going to be like well, how come she got that and I didn't right? Right. So just saying that you know, we all struggle with it. And I do think, though, as you get more and more accustomed to these thoughts going through your brain, you either let them eat you alive or you start to recognize, like, look, I can't control the fact that my head went there, it just happened. So now, what am I going to do with it? You know, I'm just going to acknowledge Yep, it's a bummer that our story didn't go that way.
Speaker 3:I'm so thrilled hers did. We talked. I feel like there's been so many episodes where we've talked about having two totally different feelings or emotions, maybe five feelings and emotions all at the same time, and this is just another one of those examples. Even as you were talking about that, I'm curious about your thoughts and like it almost made me think about really the journey of grieving, how grieving comes and goes.
Speaker 3:It's not something that, like when you first get terrible news or something you know happens that was unexpected, there's a loss you don't just like grieve for.
Speaker 3:You know, there's not like a three month window where you grieve and then it's all behind you, like, I think that grieving is something that that comes and goes and it shows up at different times and sometimes it's completely unexpected when it's going to show back up.
Speaker 3:But I think that that's something that maybe being aware of can help us during when we're feeling those pressures of comparison is realizing, ok, I'm not a bad person for feeling this, it's just I'm. It's OK that sometimes things are going to remind me of what I had hoped that we would have, the experience I hope that we would have for, you know, as a family, as a mom, as a dad for our child, and it's OK to still feel sad when you know, when you get reminders that that's not your reality doesn't mean that you haven't accepted or embraced or love aspects of your new reality. But you know, it's just. Once again, I think we can all work on practicing just kindness to ourselves and remembering that we are a whole human, not just, not just the parts that we're focusing on in the moment, that maybe we wouldn't necessarily want to put a spotlight on for everybody to see. We are a whole human with a whole human experience, and we're constantly going through things.
Speaker 2:Yeah, and you know, remembering that, ok, well, that parent might not have a child with a diagnosis, but guaranteed they have something else going on in their life. Everybody always does Right, and so you know all of us. I loved what you were saying about different abled. We also are different. What do you want to call it? Different struggled, different burden, different. So true, and I remember, you know, I remember going to a mom's group once early on. We had just gotten out of the NICU and it was probably the worst decision I ever made, because it was a mom's group of a bunch of moms who had very healthy children, which bless them. That is fantastic. But I was not in a good headspace to hear the challenges they were facing because in my world those were so irrelevant. You know, like.
Speaker 3:Or coveted right those were things that you would have. Loved to have been worrying about. Yes.
Speaker 2:And I remember leaving that group and feeling, I don't even know, like a million feelings all at once. You know, of Annoyance that that was their problems you know those were their problems Frustration that those weren't my problems, All the things, and then of course, the guilt of like well, those are legit problems, they're just not my problems Exactly. I wish they were my problems, but they're not, so we got to get over that because they're never going to be my problems. My problems are different 100%.
Speaker 3:I think that's actually a really good segue into our second part that we were talking about. That is common in the comparison trap. Is this idea that? Or let me back up a little bit. So one of the things that you and I have talked about before is that you know, with Charlotte being your first child, that was, that's literally all you like. That was your primary experience, intro to motherhood, all things. Yeah, my first child, cole, was a completely typical pregnancy, very healthy, I mean. Kid literally didn't even get an ear infection until he was two years old. Oh my gosh, I like right.
Speaker 3:I know you have to relate to that.
Speaker 3:Well, exactly, and, but I think it's interesting that having so I'm saying this is a I want to point out that if you are a parent and your first child is the one that is experiencing some type of you know, diagnosis, illness, medical complexity, whatever you label it, I have a feeling that's a very different experience, simply because with Emory, that being her, with her being my second child, I will say I felt like I was a little bit more forgiving, or it was.
Speaker 3:I found that it was easier for me than some of my friends who, it was their first child going through, you know, some major medical diagnosis, to be able to understand that when other parents who have a child with no true needs, that when they were talking about how exhausted they were because their baby just wouldn't sleep through the night, or their child is teething, or, oh my gosh, potty training is so hard, or Tommy keeps biting the kids in his class, and you know, or you know, or, oh my gosh, you know, my, you know, my 10 month old is already walking, and I remember hearing those things and just being like, yep, that's it, you know, I mean having you know, but I also remember like how panicked I was the first time cool got the flu and then. But after having Emory I'm like okay, I understand why I was so panicked. And it is scary when your kid is no matter what is going on.
Speaker 3:Right is awful when your kid can't sleep through the night and they're crying and you know they're a snotty mess and they can't breathe and and you're upset for them. So those are still very real experiences that you know, it's very valid to have feelings.
Speaker 3:It all comes back to love and but at the same time I think it's really important to acknowledge that if you're a parent who did not have a quote unquote healthy child from the start, I can completely understand, or would think that that could be so much harder to adjust to hearing people talk about that if you have no experience with it.
Speaker 2:Right, yep, Because that's all you ever wanted was to have those challenges. Like all I ever wanted when we were in the NICU was to be the one that was up all night with my baby at home. That was like the coveted dream to be the one rocking my baby, but instead an isolate is holding her and a nurse and I have to go somewhere else because there's no bed for me. You know, Like yeah.
Speaker 2:So I think that's really good insight. And, having had more children now I also I think our experience just reversed right, where I can have a lot more grace with myself when I have those thoughts, because then the next thought is, well, yeah, but when my second got a near infection, I had those same feelings or whatever. So I think a lot of it's just perspective. But coming back to that whole being mindful of when those thoughts come, because you can't control the fact that a thought pops in your brain and this affects everything in your life, we could spend so many podcasts talking about this, going on to topics that have nothing to do with medical complexities, but so you can apply this across your life and everything.
Speaker 2:When you have thoughts that pop in your brain, you can't control the fact that they popped in your brain. It's what you do with those thoughts that matters, right, and so we can take them. We can let them beat us up, we can dwell on them, we can let them determine what we do next, or we can say, hmm, yeah, that is really hard, isn't it, emily? Okay, well, good to know. Moving on, you know we were talking. It sounds very pragmatic, but it kind of is.
Speaker 3:That's just the reality.
Speaker 3:Well, that's true, and I think that's just part of the human condition, right, that there are a lot of things that are actually probably very simple to deal with.
Speaker 3:But in the moment it is so easy, for it's almost frustrating to hear about a simple way to handle something. But you and I were laughing before, but then I just made offhand what I thought was a joke, but I saw a big eyebrow raised out of you and I said, yeah, I feel like I just need a comparison box or a guilt box that when I have a thought, instead of letting it run through my head, ricochet through my head and tear apart how I feel about myself, I should just write it on a note and stick it in the box and say, okay, thought, you're out of my head. You're going in there, like acknowledge it and then move on from it and you're like, oh wait, that could actually be really powerful or really helpful, or I don't know, some people use a swear jar. Maybe you just have a guilt jar or a comparison jar. Drop a quarter, drop a dollar and then buy yourself a treat when you get to like 10 or 20 bucks.
Speaker 2:Yes, I think this is brilliant and also it helps you actually process, get the thoughts out of your head, process them, because a lot of times we have these thoughts, we're ashamed by them, so we tuck them away and hope they go away, and they only just fester and cause infection when you do that. So if you have a swear jar, a comparison jar, a guilt jar, like if it's physical, and you write it down on a sticky note and pop it in, and then you have a burn party at the end of the week every week, like that's cool or I love that idea. My husband loves to have fires, so let's do it.
Speaker 3:I love that. I'm just seeing us like doing like a moon dance at night and like throwing these notes in there, like whenever there's a full moon and like God's got the sky all lit up and there's stars and stuff, and just being like I release you from my head.
Speaker 2:Yes, I give you over to the sky.
Speaker 3:Jesus takes my pain.
Speaker 2:Right, exactly, you know, and I realized that might be a little impractical, because who has time for like an actual box and a fire and whatnot?
Speaker 3:Don't they have little desk like, or like those little like desk fires? Or I wonder if, like a smore, like an inside smores thing, my husband has those too.
Speaker 2:Yes, we have lots of options in this house. Yes, I was thinking too you could create on your phone, you know the notes section you just create a notes. That is the comparison and guilt notes, and anytime they pop in your brain you know nobody else has to see this, because a lot of times we are afraid to journal or write things down because what if somebody else sees it? Because these thoughts are so horrible is what we tell ourselves? They're not horrible, everybody has them.
Speaker 2:So if you pull open your notes and you write them down of like oh, saw this, you know, kid, today he was in a wheelchair and had oxygen and my initial thought was why do I feel so bad about my diagnosis with my child? Because she walks and she breeze on her own Right? Those are very real thoughts. And so writing that down and just being like okay, and then delete the note at the end of the week and start over the next week, you know, just like allowing yourself to have this space. Whatever it is is it a journal? Is it a box? Is it a note on your phone that helps you get it out of your head and onto some form of physical paper or physical something to be able to take the two seconds it takes to acknowledge that thought and be like, yeah, he is in a wheelchair and he is in oxygen, so on, oxygen. So, instead of comparing and feeling guilty about how I feel about my daughter, maybe I can just say a prayer for that kid and that family.
Speaker 3:Move on. You know, when you were saying that it, something came to mind that I've actually found myself struggling with a little bit, and right now I think I'm pulling the word or holding onto the word shame earlier because we haven't really used that. But I think that's a big part of this. And something that I've found myself in a couple of situations, whether it doctors' offices or at the hospital in the last few months, is when I've seen a parent with a child whose you can tell their medical needs are very severe specialized wheelchair maybe, hooked up to various things, nonverbal things like that and I feel that it's that comparison right game where I'm just like, oh my gosh, I think about how upset I get about what Emery's been through and I just can't even imagine what they've gone through. But I find myself sometimes it's funny, here I am in this foundation doing this with you, but I still have these moments when, like I don't even know what to say, like what would I? I don't know what, even know what to say to them, and so sometimes, like I just find myself not saying anything, or I become so uncomfortable with my thoughts that I don't know how to be there for them because how my child's situation isn't as bad. And I'm listening to all this and thinking you know what like in those situations.
Speaker 3:If I'm like next time I'm feeling that you know, if I'm like in an elevator, let's say, with a parent, you know, maybe next time I can just ask like oh, how old is your son? Like asking just a question that you could ask about any child the day. Or you know, or you know, or you know, are you here for the day? Or you know, or which, which department are you going to? You know, like just something. I think that might be a way to help us get out of our own heads and help us connect with each other, because what I think we will always find but no, I know we will always find, because it's literally what Charlotte's Hope Foundation was built on is the whole idea of talking to somebody who feels with you, not for you. When we talk to other people, when we take that moment to get outside of our own heads, we're always going to find we have more in common than we don't have in common.
Speaker 2:Yes, amen, sister, can I get a hallelujah, hallelujah. And the other thing that I've noticed, you know, when I get in that headspace of let's go with the elevator example, you're in the elevator with a child who clearly has a whatever you want to call it more severe or progressive illness or challenge ahead of them than yours. You can immediately get that uncomfortable. Ooh, I don't know what to do. I'm not sure how to be there for them, and so you can shut down.
Speaker 2:Or what has really worked for me is to look at them in my like mind's eye and be like there's a child of God, and it changes everything, because then you just talk to him like a normal person, you know, because they are a normal person, because they're a person and it's beautiful, you know. And so then you can just be like hey, did you get rained on when you were running in from the parking garage? We did too. We're soaking wet or you know, whatever, the cafeteria food here is horrible. What do you do when you come to have lunch? So, yeah, I think just getting out of our own headspace, of it being about us and about how, you know we aren't enough, or we don't know how to relate, or we this, we that, and turning it to them and being like, wow, what a beautiful person he or she is, let's engage. You know, I always love to give a compliment Be like.
Speaker 3:I mean, think about how often you know any child. I mean I have never, I have yet to ever see a child that I have not found something beautiful or sweet or charming or adoring about. Even my own oldest when he is on a rampage. I can still find something you know that is reminds me of you, know that sweet, beautiful miracle that he is. But sometimes just giving a compliment, I mean, or gosh flash it, just give somebody a big smile, yeah, acknowledge them. Sometimes that could be just the most helpful thing is to let somebody know I see you and I see your child and you are so worth a smile.
Speaker 2:Yes, like, not just a look of pity, yep, yeah, definitely not. Yes, so this imposter so we call this kind of the imposter syndrome where you feel like, well, my child's not as complex or doesn't have, as you know, big of needs as fill in the blank, whoever can really wreak havoc on our interactions. Because, as you can hear from what we're describing, when you have these thoughts it can affect how you then interact with that individual, and then it makes you feel even more guilty because you're like, well, gosh, I should have been able to step up to that situation, right. So, being able to just acknowledge those comparison thoughts and be like, okay, yeah, so we're not on oxygen, they are, we're just talking, you know, it's just very, very helpful to allow yourself to recognize those thoughts and not let them, like like Ashlyn said so well, wreak havoc.
Speaker 2:Another thing that we often can struggle with if you have a diagnosis and honestly this is only a new thing for me, but when you go to interact with other families who have the same diagnosis, it's easy to compare yourself to where you are on the spectrum within that diagnosis, because every diagnosis has a spectrum, right, you can be on the severe end, you can be on the mild end. Regardless, you're dealing with similar issues but on varying levels, and so it's really easy to compare, to be like well, my child has this heart condition, but she doesn't. How come we got that condition and she didn't? Or, you know, my child is doing much better and I feel like I shouldn't even be in this conversation because I'm I don't qualify right, I'm not equipped or I don't measure up to the level of challenge that this other family is having. I'll admit, I struggled with imposter syndrome and well, okay, now I'm bouncing back to the imposter. But, like, as we're launching Charlotte's Hope Foundation, I kept thinking like, but my child is verbal, my child is not G-tube dependent, my child doesn't have oxygen, she walks, you know. And so I immediately could felt like I'm not qualified to have this foundation and to lead the charge with Ashlyn of, you know, connecting with all these families who are going to have children on all these different, with all these different needs.
Speaker 2:But then coming back to the fact that, yeah, but we have our own set of struggles and it's all relatable and we can feel with, not for, and yeah, so we have different challenges, it's okay, there's going to be a lot of people who listen in, who don't have the same challenges we do, where we're in and out of surgeries constantly and we have all these mechanical problems, right, and that's okay too. But we can also relate to the medical challenges we're facing. We can relate to this comparison game. We can relate to the guilt problem. We can relate to the fact that when we have this, I was just talking to a mom yesterday who had this need to get a specific order done for her child and she didn't know which specialty to go to. So I was able to brainstorm with her and be like well, you probably want to start here, because then they can kind of triage it from there. And she was like, oh yeah, so just like we have so many skills we can share with each other, regardless of the diagnosis right.
Speaker 1:Exactly.
Speaker 2:But the same diagnosis challenge can be really hard and it's a newer challenge to meet, but I'm having to remind myself as I'm interacting with more and more parents who have hard to car, which at this point is up to like 15, you know, being able to just recognize that. Yep, some kids have struggled with a lot more severe. Unfortunately. We tend to be one of the most severe situations that I've come to learn with an art of car, which of course, then brings up the jealousy issue of like well, how come? How come we got every single diagnosis with an art of car and some didn't? That's okay.
Speaker 3:Right, it is what it is. We all have our own walks and we are all uniquely and beautifully made for sure. Yes, one thing I think that's that I want to acknowledge to you in this part of the conversation it's definitely different. Just because Emery had her diagnosis went in utero, I knew what we were facing, which meant that, even though it was a rare diagnosis, there's still plenty of families who have, you know, who deal with bladder extra fee.
Speaker 3:And what I fell into with that comparison trap was being so hungry, like trying to satiate myself with all the knowledge of every child, of every case, of every surgical experience, of every medication, of every specialist, where I wanted to know every single thing to happen to every child. And what I found leading up to Emory's first surgery was I was kind of in this dangerous game of creating all these expectations for what Emory's journey was going to be like. I was pulling all of these details as if they were evidence to tell me exactly the path that we were going to be on and how she was going to react to this medication and for how many days she would have spasms or how she would you know, would she be able to sleep through the night and things like this. And Emory's surgical journey, thank God, was so much worse than majority of the ones that I talked to that I learned about because there were some things that were completely unrelated to her diagnosis itself. Some of the things that we had to deal with were truly because, being a redhead, there's a lot of evidence out there that redhead struggle more with pain medication and with anesthesia, and Emory definitely fell into the evidence, or, you know, proof of evidence for that line of thought, for that theory. And then there were also, you know, as I've talked before, there were some, of course, completely accidental but human errors that came into play that literally, you know, almost cost us her life.
Speaker 3:So we had such an insanely traumatic experience that majority of families did not experience and that really then laid the pathway for the rest of our month and, honestly, myself for quite a long time, because you know the level of trauma that I experienced was just, it was just a little bit different, I mean, but at the same time I think one of the best things that my mom told me during that time was she recommended to me she's like Ashlyn, she's like tell you what she's like. I will stay in the parent support group for bladder extra fee. And so you know, if you want to ask questions or ask people for recommendations, I will do that for you. But I think it would be best for you to consider just turning off those notifications and kind of excusing yourself from being able to see any posts in those groups, because I was, you know, every time one would come in and somebody would be posting a picture of their child that maybe had surgery at the same time as Emory and that child was doing really well, or that child was home already, or that child, you know, they had a surgery technique where they were allowed to be picked up and held and I just was using everything to beat myself up and feel worse and worse or more scared.
Speaker 3:And but it's funny is, at the end of our surgery journey there were things about, like I learned that there were things about Emory that she handled so much better than quote, unquote the average patient that goes through that surgery right and her bones seem to heal faster than most children in that hospital's experience and you know she was able to do certain things a little bit sooner than expected and on and on. And so what I really learned from that is that it's okay, certainly, to look outward for some guidance, but don't make those your hard. Fast boundary lines for your experience right. Leave room for flexibility and always, always remember that your child is one of a kind. No other human being is ever going to have the exact same experience your child is going to have, and I think it's so important to stay in tune to that, so that way we allow our children to tell us who they are and what they can do and what they need.
Speaker 3:Not what you know not what average numbers and data tell us they need, based on other cases.
Speaker 2:Yes, so you know what I'm thinking about. How you know, we didn't have a diagnosis till a few months ago and, honestly, it was the timing of it was so perfect because for the first five years we were able to, there was absolutely no, like I had nowhere to do any of the research that you did, right, ashlyn. So I had zero expectations of what her future would look like and, honestly, probably the biggest work for me upfront was recognizing and and just grappling with and becoming okay with the fact that there was no roadmap for us.
Speaker 2:It was just going to be paved one day at a time. But there's some really freeing aspects to that and I remember being a little bit relieved when genetics would come back to us time and time again and say, well, the latest test still says nothing. That really helps us because it's like, okay, so we're not put in this bucket of classification, and now we have all these expectations of what our future holds. There's no expectation, so she will do what she does or she won't what she won't. And that came with, of course, its own set of challenges because a lot of things like it came. It required a ton of monitoring, a ton of watching to figure out what each system is going to do, what problems are going to pop up, and then eventually it became very problematic because we couldn't get the care that we needed without getting the diagnosis. So the timing of getting a diagnosis was perfect. But I'm glad we had those first kind of formative years as parents, learning how to be parents of a child who have has complexities, because we learned from the get go that like she's going to be Charlotte and she we kept calling it Charlotte syndrome, which was really kind of fun, and I would always laugh when I talked to the doctors because I'd be like yeah, because they would always ask, well, what is, what is her diagnosis? And I'd be like Charlotte syndrome, and they'd look at me like really trying to figure out if that's an actual syndrome, and I'm like no, I mean, that's her, it's the Charlotte syndrome. Now we actually have a name for it, but I still call it the syndrome. What's been fun too is when I'm interacting with more parents who have heart, a car. They've been telling me like, oh yeah, I've been calling it my child's. All, all people who have heart, a car are female. So it's always, you know, I've been calling it my daughter's name syndrome also. So we have, you know, all these, all these little girls names for the syndrome, because we all had the same journey until this latest genetics test, able to figure out that this isn't a real diagnosis.
Speaker 2:So anyway, I think there's some real power in just taking some time to recognize what Ashlyn said. Your child is uniquely, wonderfully, beautifully made. There is no one else who's ever going to be like your child. He or she is I always screw this up unrepeatable, irreplaceable, invaluable, and they're going to follow their own little path and it's going to be a wild journey. So people buckle up, you know, and and let this comparison game, you know, just be what it is and not let it rule us up. I can hear my child coming in, so that tells us it's time to wrap it up. I'm going to put it on mute while you wrap it. How's that, ashlyn? That?
Speaker 3:works All right, well, and my little redhead munchkin is up as well. And for a little, another quick way see, the comparison game exists in all areas of life. Life because I literally handed my child my phone and put YouTube, gave her YouTube kids, so that I could finish this up. And there are times I see other parents who never give their children phones and I can start to beat myself up. But I'm looking at this as this is for the greater good, so that we can release this podcast without 37 interruptions every moment.
Speaker 2:And it's only for like 10 minutes. So you're good. Exactly, yes.
Speaker 3:But but no. So hopefully I hope everybody who listened to this certainly can relate with different aspects of it. I would say, even if you are listening to this and you don't, you don't have to have a child with medical needs to fall into the comparison trap. It's just part of being human. But the biggest takeaway I hope that everybody lands from this is that do not make yourself wrong for having any of these thoughts. First and foremost, you are not wrong. You are not bad. You should not feel shame for having any of these because really, the, the, what's really fueling these thoughts? It's always love, right? It's. It's coming from a place of you want the best for your child and sometimes what you define as the best isn't going to happen or isn't going to be possible. So you have to redefine it for your life. Everybody is constantly having to redefine what okay looks like in their life, healthy, child or not. That's just part of our own journeys with this.
Speaker 3:The other thing that I hope that you take from this is that we talked about, you know, the idea of making sure that, after you acknowledge that you're having those thoughts is taking that moment to just stare it down, except that it's just a thought that you cannot control, whether you need to write it down. Put it in a box, put it in a you know we were joking around about the swear jar so instead, maybe have a comparison jar or a guilt guilty jar and, you know, drop a dollar in there or just write a note and put it in the box, or throw it in the bonfire at the end of the month. Like Emily said, just just work on being kind enough to let those feelings come and then let them go, because it's when we keep them inside with our we keep them trapped in our own heads. That's when they can ricochet and do the most damage and that's not good for us. And I also know to like I don't want my kids to grow up feeling bad when they have thoughts like that. So, you know, just practicing being that example and teaching them what to do when they have those thoughts, that's all something that we can do together.
Speaker 3:So, with that, I'm so glad that you all were able to join us today. Emily, I love you. I'm so glad that we got to do this. I've missed you and, yeah, we love you and we hope that you all are doing as well as you can and if you need anything, as always, we're here. We love to hear from you, we're thinking about you and we're believing in the best for you. So all right.
Speaker 2:Yes, and I will jump in in a moment of silence on our end. I love you too, Ashlyn. It is so much fun doing these episodes together. We hope that it brings so much peace to those who are listening, Hope and some some clarity and direction and just knowing you're not alone and you can do this. And also, if you do have anything you want to connect us, connect with us about reach out to contact at charlottehopefoundationorg and definitely let us know if you want to get the newsletter via email or via mail. We would be delighted to keep you informed about all the incredible things going on at Charlotte Hope Foundation.
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.