Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Your Child's Diagnosis: Why It's Not Your Fault and How to Move Forward
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"What did I do wrong?"
"How did I cause this?"
"Is this my fault?"
Some form of this question is the first thing to cross the mind of almost every single parent at what we refer to as "the moment of impact" - the moment a parent learns their child is not ok and requires medical intervention.
Take a trip back with us to our original episode of Empowered by Hope as we share our emotional journeys through parenting children with complex medical needs, focusing on the ever-present shadow of guilt. Ashlyn opens up about the life-altering decision to venture into medical tourism, seeking a transformative surgery for her daughter Emery in London. Meanwhile, Emily reflects on her tireless efforts to provide the best care for her daughter Charlotte, navigating a labyrinth of specialists and daily challenges. Together, we explore the heartache and resilience that come with these struggles, offering our insights and support to those walking a similar path.
Unravel the heavy emotions that accompany a challenging diagnosis as we dissect the guilt that often haunts parents of children with medical complexities, no matter the diagnosis or severity. Through candid discussions, we emphasize that such feelings are not a reflection of parental inadequacy but rather a natural part of the journey. We tackle the difficult reality of balancing heart-wrenching medical decisions with the love for our children, and how guilt can blur the truth of our devotion. By sharing our personal experiences, we aim to provide clarity and reduce self-judgment, allowing parents to navigate their path with more confidence and self-compassion.
Community and connection are lifelines in these challenging times, and we emphasize their importance by encouraging open communication and shared stories. We discuss practical strategies for managing guilt and finding hope, such as writing letters to oneself or seeking solace in spiritual beliefs. Our goal is to create a welcoming space where listeners feel seen and understood, reinforcing that no one is alone in their journey. We invite you to connect with us, share your stories, and spread the support to others who might benefit from these heartfelt conversations.
And please, remember, your child's diagnosis is NOT your fault.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.
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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
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: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 episode one, After our introduction that Ashlyn and I recorded. We're so excited to launch into our content and to get to know you and to get to know each other, Ashlyn, a little bit more. Ashlyn, why don't you share what we're going to be talking about today? I'm so excited about this topic because I think it's relevant to everyone.
Speaker 3:I think that is absolutely true and welcome everyone so excited to have you with us. So today's episode is one that, without knowing you, I know that each of you listening can relate to this. We are referring to today's episode as guilt the real green-eyed monster, and guilt is something that can be very overwhelming, very scary. But today we are going to face guilt together and we are all going to leave, hopefully, feeling a little bit better, a little bit stronger and hopefully, a lot less guilty.
Speaker 2:Yes, well said. So well said. Well, before we dive into all things guilt, ashlyn, we thought we'd take a little bit of time to just catch up with each other, just a few minutes, so that you who's tuning in can get to know Ashlyn and I a little bit more and we can just catch up with each other a little bit. So, ashlyn, I know you've had a lot of things going on with Emery's care, so can you fill us in?
Speaker 3:Yes, I would love to so. As you all know, Emery was born with bladder atrophy and she had one surgery last year and, honestly, for the longest time we assumed that our next surgery wouldn't be for a few more years, but by total happenstance, truthfully, a couple months ago I learned about a surgery that's performed for her condition. That is done in London and we are in Indiana, so it is not anything like.
Speaker 1:London, England.
Speaker 3:Right, right, like you know, god rest the queen. Yes, london, absolutely. And we are actually now currently which is crazy to me to even say, as you can hear in my voice Now, currently which is crazy to me to even say, as you can hear in my voice we are making plans to travel to London after the first of the year to pursue a surgery for Emery that could truly alter her options for the future and really enhance quality of life, which that's all that really matters to us, and it is quite a journey and something I look forward to sharing more with you all as we go along, because I'm learning more about it every single day. But I admit, as many wild things as this journey has thrown at me, I never anticipated it throwing England at me, which I've learned recently is referred to as medical tourism. So more to share on that in the near future.
Speaker 1:What about you, Emily?
Speaker 3:Medical tourism. Yes, that sounds like a good future episode, but I know that you have been going through it, my friend, and I kind of feel like you got yanked back to being thrown really deep waters again. So why don't you share what's been going on with you and with Charlotte?
Speaker 2:Yeah, well, before I share about us and Charlotte, I just have to say I just so admire your tenacity and your get it doneness where you pursue you know you've heard about this surgeon, you heard about this surgery literally across the world and you decided to look into it and ultimately determine it was the best route for your child and, honestly, the diagnosis that Emery and Charlotte have while there's vast differences, there are some similarities. So I am just watching and learning while you go through with this and I'm going to see how I can transfer it to Charlotte too. So we'll see. But yeah, so Charlotte and I and our family are definitely in the throes of really lately.
Speaker 2:It's kind of feeling like we are back, not at square one that sounds dramatic but just back at trying to figure out where to get the best care. Who can provide the best care is the kind of care Charlotte even needs. Out there. I've spent hours and hours pouring through research papers and calling anyone who will answer their phone and looking up who's the authors of these research papers to call them to figure it out. We just have so many complexities with Charlotte's care and there's no diagnosis or like clinic or kind of medical home, as I've learned the term is. So you learn medical tourism, I've learned medical home. We don't have a medical home but we do have over 20 specialists involved and they're all fabulous but, as you can imagine, it just gets so cumbersome and so many things get lost in her care. So trying to just figure out where do we find that medical home, if it even exists, and if it doesn't exist, how do we build it? And if we do build it, where are we going to build it and how can we do it quickly to limit the trauma and the turmoil and the medical mishaps that happen for Charlotte's care.
Speaker 2:So actually, right before we recorded this, I started making a list. That well not started. I continued working on the list of all the phone calls that need made when we're done with this recording. So it's all good and I really do think we've been brought to this point, you know, just kind of realizing we really need to kind of upend how we've been doing her care and reimagine it from the beginning on purpose, because we really needed to kind of shake things up and do it different, because she remains in pain a lot every single day and I keep saying if I could just give up and just stop being a hound dog? I would gladly. But then I see my daughter on the floor crying every day for an hour and it's like, yeah, that's not nope, I can't give up, we got to keep going.
Speaker 3:So, yeah, that's what's going on in our world. Well, as I've told you many times and I know our listeners are going to get a very deep look into just how incredibly strong you are, not just as a mom, but just as a human being. You are on a mission and there is nobody else that I would want to recruit to my team before you. If I ever need to get anything done, if I ever need to find a better answer to a problem, you are definitely that person. And it's funny.
Speaker 3:I actually heard a quote this week from somebody else I really admire. His name is Ed Milet and he said complexity is the enemy of execution. And I instantly thought of you and I was like that's what you're going after. You're trying to find the most simplistic way to address your daughter's complex needs and in my opinion, that's pretty heroic of you because it is not a small feat. So excited to support you and I know our listeners are going to really love hearing what progress you make, what struggles you have. But I know together we'll face them and we might even get some really cool insights from our audience. We hope that might be able to help you.
Speaker 2:Yes, I'm looking forward to that. I'm really looking forward to this being a two-way relationship where you know, hopefully, what you and I share in this podcast is really helpful for other parents and caregivers who are in the trenches with us, and also, I'm very confident we're going to learn so much from you all who are listening, and I cannot wait. It'll be really fun and you know what. This actually transitions beautifully into our topic today, ashlyn, because I was sharing with you a little bit before we hit record. I'm struggling with guilt right now and it's something that comes and goes, but comes frequently and I will say, as time goes, I get better and better at looking that green-eyed monster right in the eyes instead of kind of skirting around it and letting it hang out in my heart and head for much longer than it is welcome. So that's good, that's a perk.
Speaker 2:But yeah lately I've been dealing with a lot of guilt of you know, like how long is my daughter going to be in pain before I can figure this out? And you know why didn't I realize I should have gone, you know, in search for different care, specific care? Why didn't I know? You know the term medical home, all those things.
Speaker 2:You know it's easy to just beat yourself up with guilt that you know we have in some, some way, shape or form, failed our children. So this topic, while we are going to focus a lot in this episode on that initial feeling of guilt when you receive the diagnosis because you know this is episode one, so we'll start at the beginning of the journey but I think it just is a beautiful thing to recognize that it's not like oh much like most emotions. It's not like, oh, you address that guilt and then you move on and it's never resurfaces. It is that green-eyed monster that you just have to continue to learn to look in the eye and you get less and less afraid of it with time and a lot more just like yep, there's that old, familiar feeling of guilt. Now I need to remember how to tackle it and say bye-bye and close the door on the guilt, because, ultimately, it doesn't help us to serve our children, does it?
Speaker 3:No, it doesn't. And I just want to put on the record right now that, in terms of what we all are talking about, in terms of having a child who has medical complexities and the guilt associated with that, I want to label guilt right now that it is a liar and is something that will continue to lie to you, and that's why we know it's so important to talk about today, because the sneaky thing about that green-eyed monster is that it can very easily color everything with that green haze. We'll call it. Before you know it, you'll realize you're looking at everything through this guilt filter and the problem with that is that this false guilt really causes you to look inward and look for blame, because it's almost a sense of finding that control again right, like if I blame myself, I feel guilty, at least I feel like there's a reason. But that guilt can also stop us, in our tracks, from looking outward and taking action. You know being solution-oriented, which, let's face it, that's what our children need, right.
Speaker 2:Right, and I think it's important to help you know. I think if I were first tuning into this, I would initially be like guilt, what are you talking about? Help me understand. But when we give you a few examples, I think you'll quickly be like oh yeah, I get it.
Speaker 2:We actually have a board member at Charlotte's Hope Foundation who is a maternal fetal medicine nurse, and when we were trying to come up with the initial podcast topics, we asked her what are some of the initial questions or comments you receive from parents who receive diagnoses in utero, because she often is right there at the moment of parents receiving diagnoses or at least hearing your baby is not healthy, right? And she said, without a doubt, it's guilt. And I was like well, in what form? How does that come out? And she was like it comes out in the form of what did I do to cause this? And isn't that the rhetoric that goes through our head over and over? What did I do to cause this? And I remember that was one of the first things I thought too, you know, like, did I take one more Tylenol than I should have? You know when?
Speaker 2:I had a migraine? Did I have one drink too many before I knew I was pregnant? Or that smoke that I inhaled on vacation in July when I was, you know, 10 weeks pregnant? Did that, did that? Did I say months? I meant weeks anyway. But but you know, it's easy to start thinking like, what did I do to cause this? And she said without a doubt you know most parents that's one of the first questions that comes out of their mouth is what did I do to cause this? So that's, it's interesting. You know, it's really easy for us to think that that's something that only we deal with. Like it's easy for me to think, oh, I'm the only one that you know keeps wanting to blame myself. But talk to anyone on the front lines of dealing with medical complexities and they're like, nope, you're not alone in that. At all?
Speaker 3:No, definitely not. And I, too, had the same experience as far as when we got the diagnosis I mean the list of things that I instantly started throwing on the guilt train for myself. I look back and I'm sad for that person who was sitting on that ultrasound table at that time, because I think about who that person was, how terrible it felt and it was a really hard situation. That, truthfully, that guilt only made worse. But I can also understand. That's just part of the process and it is completely normal. Yeah, it is to be expected, honestly, but if you haven't felt that, that's awesome.
Speaker 1:Yeah, don't feel guilty. There might be some people who don't, and that's great, yeah.
Speaker 3:But for some of you who are struggling with that idea, one of the things that took me a while at least to figure out and I'm pretty sure conversations with you, emily, helped me was that While I felt guilty, like surely even if it's something in my DNA that caused it which they don't think there is, but even if there was, it's not like I intentionally chose my DNA to go into my child to make sure they have a difficult life. You had no say in it. So I think it's hard at the time to make a distinction between the difference in reason that something happened and blame for why something happened, and I think that's how guilt just kind of sneaks around and makes you think like you did something to cause this, you forced this to happen, when in reality none of us signed our kids up for this.
Speaker 2:Right, okay, can you elaborate more, because I love where you were going with that reason versus blame.
Speaker 3:Right. So let me give an example. We love our Down syndrome family out there, right? I know several people who have superheroes, as I like to refer to all of our kids who have Down syndrome, and the reality is it's a chromosomal, it's plus one, right? I think it's one extra chromosome that causes it. Well, that parent, they know the reason for it it's because there's an additional chromosome and it just happened when the DNA lined up when they're being formed, but the parent did not add that chromosome. You had zero control. So to blame yourself that that took place isn't really when you think about it. It's not technically rational. It's understandable how you go there, but you're not responsible for it. Does that help a little bit?
Speaker 2:Yes, absolutely Absolutely. You know, we definitely struggled with that too. There's no's, no, um, they can't. Well, we're actually doing a whole genome sequence Now. We already did a whole exome and it didn't uncover anything. Now we're in the throes of doing a whole genome to see if that'll uncover anything, but thus far there's nothing that shows. You know, genetically, how things lined up to create the beauty that is Charlotte. But you know, it's almost like this dance of you want the explanation but you don't want it to prove that it's the combination of you and your significant other's genetics that led to it. And yet, if it is, that's perfectly fine. Like to your point, it's not our fault at all. Right, so it's such a mind game.
Speaker 3:And it's so interesting and it's one we need help with too.
Speaker 2:I think that's really important Help addressing guilt from the start, yes, and I think calling it out and recognizing it is step one, which is hopefully what we're accomplishing here.
Speaker 2:I remember, too, one of the things I maybe some of you will relate to this some of you won't, but I remember I had so much guilt.
Speaker 2:Remember feeling guilty for feeling sad for the healthy child I thought I was going to have, and then feeling like that made me less loving to the child I was having. Like somehow the fact that I felt sad made me love her less, and it took a while for me to recognize that thought and call it out for the liar that it was and to say no, in fact, the fact that I'm sad about my child's health diagnosis actually means I love her even or you know that much more. Because I'm sad for the healthy child I thought I was going to have, I'm sad for her, for the future that I know she has if she lives, you know, and all those things. So, but it's such a I mean, yeah, it's just it's oftentimes guilt flips the truth on its head and makes it a liar, like you said, like it was perfectly normal for me to mourn the health of my child and that did not mean I loved her any less.
Speaker 3:So not at all and it all.
Speaker 3:And it's funny how easily guilt shows up.
Speaker 3:I mean you, just sharing that story transported me back to when Emery was delivered by C-section and when she was born we were expecting her bladder to be covered by skin and it wasn't. And I remember just feeling like my heart just fell through my body like to the floor of the OR, and then instantly in that next moment, kicking myself thinking what a bad bomb I am to not be smiling from ear to ear and just joyful that she's here and alive and okay technically. And I struggled with that for a long time and truthfully, it took going to counseling and working on that in therapy to help me get through it. Because even after a year I was still struggled with it. When I thought back to that memory and I think I was almost punishing myself, holding on to that guilt, which sounds silly, but it's amazing how that can be kind of a natural reaction to do. But that's what I was doing was punishing myself by only focusing on the negative of what happened instead of acknowledging that simultaneously. I was thrilled she was there.
Speaker 1:Of course.
Speaker 3:You know it's hard to believe it, but you get lots of opportunities to experience it in this journey that wonderful emotions and awful emotions can live side by side at the same time yes, More often than not, don't they Mm-hmm? Yes, yes.
Speaker 2:Absolutely Just like you can be. Yeah, I mean, you can be simultaneously deeply joyful and also so sad all at the same time. Yeah, there's so many times I can relate to having simultaneous, seemingly contradicting emotions just kind of cohabitating in my heart and brain.
Speaker 3:Yeah, what about?
Speaker 3:I know one of the things that in your book that will be available very soon, she is Charlotte. I know you go into detail about this I do, but I think we can both talk about what, about the guilt that crushes you when not only do you realize your child's going to live with hardships, but when you realize you have to have your child go through very painful, very challenging procedures? You name it because it's what's best for them. But I mean, I remember the times that I've had to hand Emory over, knowing that it was going to be something that hurt her or scared her or both, and literally beating myself up for oh my gosh, I can't believe I'm doing this to my child, but I have to. How have you dealt with that?
Speaker 2:Good question, yeah, Well, yeah, it's definitely a big thing that we navigate on a very regular basis I mean even a daily basis like the trauma of taking a new medication, which is a very regular occurrence in our world. And at this point, any medication that's not cherry red Tylenol basically causes a huge traumatic response from Charlotte and my, my reaction of guilt is like my trauma response. Almost I recognize it as it's happening and just feeling horribly guilty, like I'm giving you this antibiotic, that I've tasted it and it is disgusting, but you have to take it because in the meantime your kidneys are getting overrun by this bacteria. So it is really hard, the best way I gosh, and there's no silver bullet, but there's a lot of different ways that seem to help. I think for me I'm kind of a control freak, although this whole situation has taught me no.
Speaker 3:I've never seen that side of you. Right right right, you should see our show notes everybody, she's very, very organized, oh boy.
Speaker 2:Yeah, so type A personality to the max. So my brain instantly I think my defense mechanism for guilt is or trauma or fill in the blank is instantly going into problem solving mode is like okay, this antibiotic tastes absolutely disgusting. Can I get it in pill form? Can we try a different antibiotic? Can we this, can we that? And I find myself on the phone for hours with this doctor and that doctor and this pharmacist, you know, can we get a different flavor added to it? Can we that? And I find myself on the phone for hours with this doctor and that doctor and this pharmacist. Can we get a different flavor added to it? Can we hide it in Reese's? We should buy stock in Reese's, by the way. It hides a lot of nasty-.
Speaker 1:You heard it folks.
Speaker 2:Yeah, Thank you, Reese's, for all the medications you've helped me get into my child. Don't tell Charlotte. But then I even feel guilty for that, because it's like I don't want to ever deceit my child, you know. But here I am, like okay, you have to leave the kitchen so I can make your yummy Reese's. You know this is a daily occurrence, so, uh yeah, but I think for me it's trying to find little ways that I can feel like I do have a sense of control of what I can impact. Like, can I, you know, can I sit down with a child life specialist or a psychologist before we're going to enter into something very traumatic that I know is going to be traumatic, and learn some tools to help Charlotte, you know, like, can I make a social story for her? Can I get a doll and show her how this X, Y, XYZ procedure is done on a doll and then let her play it out? Can I talk to the doctors about how we can crush a pill and hide it in a Reese's instead?
Speaker 2:of liquid format, whatever. So that's helped me a lot. And then part of it is just knowing like guilt and mourning is part of the deal. Knowing like guilt and mourning is part of the deal, and I know so. For instance, I know in two and a half weeks we have a procedure. It's relatively minor but it's anesthesia. It's a couple hours in intervention radiology and it's the whole rigmarole of coming out of anesthesia again and it'll be our 14th time in five years.
Speaker 2:And so I know that the week before that procedure I'm going to go in a tailspin of like I don't want to do this, I don't want to put my kid through this. You know, how do I make it better? How do I make it go away? Should I cancel it, all those things? And now knowing that it helps because I get to that point and I'm like here we are, we're at this point and that's okay. We're just going to sit in this emotion for a little while, we're going to navigate it and ultimately, yes, we're going to go through with the procedure. But it is a helpful emotion too because it helps me like think, okay, well, how do I make this better? You know, can I call and make sure child life is going to be there beforehand. Can they walk me through what's going to happen so I can prepare Charlotte, like whatever the little things are that you can think of that are going to help. So that's my tactic. What's yours, ashlyn?
Speaker 3:Well, first off, I think that that is an excellent summary of what you do and I know that that has helped guide me a lot of the time on this journey. I've learned that from you and I'm grateful that you've been able to be an example to me for that. And you know, bring some good out of your horrible guilt. So thank you. But one of the things I was thinking while you're saying that is even taking it a step back. I think one of the hardest things to do when slammed with the guilt you know, even if it was fake guilt when we found, found out the diagnosis was to just sit still and actually acknowledge it. Yes, you know what I mean Sitting down and talking with somebody who was a safe person for my emotions, because I can really easily feel like there's nobody who can understand, or you can't possibly say to somebody I'm really sad, my kid's going to be like this, is going to have this, because you're obviously going to be judged for being a terrible parent. Right, and absolutely not at all.
Speaker 1:No.
Speaker 3:That's not the case, and I'm going to say, if somebody ever does say that to you, you might want to reconsider what your friends look like, or you might want to change how much you want to share with certain friends. Not everybody needs to witness your deepest and darkest emotions, and that's something that this journey teaches you, which is actually a pretty cool lesson not one I was looking for, but it is helpful. I've learned who are the people that I can really share the nitty gritty with the awesome things I want to celebrate, but also the dark things that I'm judging myself for Right, and so just taking the time to just stop and literally say I am feeling really guilty. This is so hard, but the next step is going to be figuring out what I can do, and I know I just had a really big pause there, but honestly, I think you just have to allow yourself time to just sit in that guilt for a little bit. Yeah, but then from there, you talk to somebody, possibly. Or, if you don't have somebody to talk to guys.
Speaker 3:We also recommend write it down Write out your thoughts, because there is no place scarier than to leave your dark thoughts, your scared thoughts, your fears inside your head, because they just get magnified and they don't stand still so you can't really stare them down and address them.
Speaker 3:And as hard as that can be, if we don't look at the problem, if we don't have clear understanding of what's causing the pain, then we can't find the right solution. So I think that, for me, is just the biggest thing I want to share with you all is, as hard as that may seem, don't be afraid to sit in it for a little bit and then share with somebody who can listen but can also be there to remind you that it's okay that you feel that way. But just know I'm here as your friend to say it may not be true but I'm here to take those feelings.
Speaker 2:Yes, yes, oh, I think that's so awesome, ashlyn, what you just shared, I think, yeah, the grounding thought for this whole episode is, or the action step I guess you could say is to allow yourself to sit in that guilt and to not be shocked by it.
Speaker 2:I think that's what's made it more navigable as time goes, with me and Charlotte, and our journey is just like I said earlier, I know it's coming, it's going to come and I don't have to run from it, I don't have to hide from it, it's just going to come and we're going to deal with it and we're going to get through it.
Speaker 2:But then, secondly, like you said, after sitting in it, or maybe while you're sitting in, it is finding a way to get it out, whether that's to another person on paper, to a spiritual director, to a therapist, to the doctor, you know, because the doctor is going to be quick to reassure you that it's not your fault. But I think to your point too, about picking the right people to talk to about it. It's and we're going to talk about this a lot, I'm sure, and it's in my book a lot too, I think something to remember. If you share something. That's, for instance, I feel guilty about mourning the health of my child, or I feel sad about the healthy child I thought I was going to have, or the future of my child.
Speaker 3:I thought I was going to have, or the future of my child, or what about feeling that sadness that you feel for parenthood not looking the way that you thought it was going to be? Yes, yes, oh man, that's one that made me feel really guilty. Really fast this isn't what I thought having two kids was going to look like this isn't what I was signing up for. But gosh, I can't tell anybody except you, Emily, and my family.
Speaker 2:And now we've announced it to the whole world, buddy, except you, Emily and my family, and now we've announced it to the whole world. But I think that a lot of times if people hear you express that deep emotion and they are quick to surpass it or say, oh, that's not your fault or whatever, and make it feel unacknowledged, it's not because they're bad people, it's not because they're not loving or trying to be loving. On the contrary, I think oftentimes people are not sure how to help and thank God most people have not been in our shoes with children as complex as we have, and so it makes them really uncomfortable for good reason. So I think a lot of times people will kind of.
Speaker 2:I remember early in the journey, so many people were so supportive and I was so grateful and oftentimes you know, people would be like I'm sure she'll be okay and that would just hit me wrong Cause I'm like no, she's not going to be okay, and it felt like an invalidation of my emotion. But as I had some time to process it, it was a realization that that was not them invalidating it. It was really just them trying to help and not knowing how I think this journey has.
Speaker 2:Now I'm kind of jumping topics here, but it's just taught me a lot of grace with people, because they you know, 99.9% are always trying to help. Maybe just don't know exactly what's needed in that moment, and so sometimes I think we can even have the grace to just say you know what? What I really need right now is not for anybody to make it better, but just to be just to hear me. You know, like sometimes I think I should have said that, and maybe I still should. It's sometimes, when I'm talking about something, to just be like I don't want you to make it better, because it's not going to be better. It's not about the nail, right?
Speaker 2:Have you ever watched that YouTube video? Never, I have not. I need to check this out. Oh man, it's so funny. Anyway, but just like telling people a lot of times they're not going to know what it is that you need in that stage of your journey. So if you're feeling guilty and you need to express that to someone, sometimes maybe even just saying beforehand like hey, I'm going to share something with you that I'm a little nervous to share because it makes me a little scared of how you're going to judge me, so can you just like hear me out and just listen, right? I think that's perfectly fine and I bet people will appreciate that.
Speaker 3:I love that. I think that's a fantastic idea. I just want to bring up possibly one other way to deal with guilt for some maybe some people out there who maybe don't feel like anybody meets that criteria that you can share this with. First off reminder, we do really want to be here for you. We absolutely mean that. So the email is contact at charlotteshopefoundationorg. Feel free to email us. If you want to bare your soul, you can. If you just want to send a really short message, we would love to support you and be there for you as best we can. If you just want to send a really short message, we would love to support you and be there for you as best we can.
Speaker 3:But one other way that could help some of you who are trying to figure out how to navigate this guilt or being overwhelmed by it is writing a letter to To yourself.
Speaker 3:But thinking about it from the perspective as if you were writing it to a friend. Put yourself in somebody else's shoes, looking at your situation, Because how often are we so easy to let everybody else either and say it and sit with her, but in my head there's a lot of times I'm screaming. How can you possibly feel guilty over this. There is nothing you did to cause this. You're the most amazing mom, and I mean that, and I have opportunities to share that with her, but not necessarily in that moment. But it's really shown me how much easier it is to share positive words, encouragement and support with a friend, but how difficult it can be to extend it to myself. So just something to try. I've heard of it. I've heard of that exercise used in different ways in different therapies as well. So maybe just something to keep in your back pocket if you feel like you need a little bit of help dealing with that guilt but aren't sure who to take it to.
Speaker 2:Yet I love that. I love that, and you know what Something else that kind of goes right hand in hand with that. If you are someone of spiritual belief, sometimes for me, writing it out in a journal like what you're saying, and writing it as a letter to the Lord and then having him write back to me what I think he would say is such a profound exercise, because it's like a thousand times more loving and graceful than I would ever be to myself, a friend or from a greater being, and how that can just change your perspective entirely when you read those words written to you from you, but to you. Yeah, absolutely, I wanted to jump in.
Speaker 2:If you are in the early stages, like you're at the moment of receiving diagnosis, and you're having those emotions of guilt of what did I do to cause this, I think something to keep in mind and maybe this is relevant for any stage when you have this guilt is you don't have to make any quick decisions.
Speaker 2:Oftentimes, when we feel guilt, we start acting out of fear. Right, when I start feeling guilty about something, I start getting fearful of what have I done to cause this? And so then I start scrambling and acting out of fear rather than acting out of loving confidence, and if I'm stuck in that fearful space, I'm going to make decisions that I am not going to love later. So one of my best advice that I can share and actually this came from that maternal fetal medicine doctor or nurse was just when you're in that moment of guilt, don't make any big decisions, hit pause and, just like we've said this whole time, sit in that, acknowledge it, process it, write it out, get it out, share it with somebody, but don't feel like you have to make any quick decisions about your child's care or your own.
Speaker 3:I think that is fantastic advice and definitely something that can help a lot of us, and myself included. Still, there are times, right now with Emory's journey, where we are right now, I was starting to feel I actually felt guilty when I learned about this new procedure because for a time I thought, did I become complacent? Like, technically, this surgery over there is done when they're a year old? Well, emory's almost a year and a half old, so start thinking have I kept something from her that she really needs? And then the next thing I felt guilty about, which it's amazing how it's a runaway train, right. But the next thing was, once, now that we know we're moving forward with pursuing the surgery, I started feeling guilty about oh my gosh, I'm now signing my year and a half old up for a surgery instead of waiting until she's four or five. Is she going to be so scared? How much more trauma is this going to be? Because we experienced a lot of trauma our first surgery and so very quickly beating myself up but writing it out Honestly.
Speaker 3:I have done that.
Speaker 3:I've been making just these lists of why am I doing what I'm doing, and they've really been talking points to talk with doctors.
Speaker 3:But I'm starting to realize that seeing these notes is actually really helping me keep my eye on my intentions for this, the purpose, and helping me be, or maybe, I guess, just give myself more grace for how I got to this point and give myself grace as we move forward and just know that I love my daughter more than could ever be put into words, and I know I'm going to do everything I can to make sure this experience goes as well as it can. But, more importantly, I'm just going to be there for her, and that's been enough to kind of help me move past that guilt. It still tries to show its head on occasion, but at least I'm aware of it, and that voice of guilt has honestly been helping me a little bit as a guide these last few weeks, and so that's been a new way to look at guilt as just a voice guiding me and trying to alert me to things that I'm fearful of and might want to pay attention to a little sooner in our journey.
Speaker 2:That is gold, Ashlyn. Oh my gosh, what you just shared is gold. Yes, I think oftentimes guilt it can be a very helpful thing because it helps us if we stop skirting around it and try to act like it's not there and we look it in the eyes, it really does help point out some things that we can acknowledge and then writing. I loved I wrote this down because I'm going to do it too, Writing down. Why am I doing what I'm doing? Because then, when that guilt starts surfacing again and what you shared about what you've been feeling, about guilt of like, did I hold something from my child and now I'm signing her up for a surgery, even sooner, I mean that resonated so much with me.
Speaker 2:I've had those feelings so many times. I'm pursuing all of these different specialists and they're putting her through the ringer of so many tests and I'm the one signing her up for them because I'm the one seeking these specialists, but at the end, it's because I'm trying to help her stop being in pain and we have to get to the bottom of that. We can't keep writhing on the floor in pain every single day, you know so. Anyway, I just loved everything you just said and I'm going to write that down, that you know when we're feeling guilty. If we can write down why we're doing what we're doing or what the next steps are and why, that can really help guilt be a tool for us rather than something we fear.
Speaker 3:Right, and the other thing about that list is that honestly, it's helping me, I think, and it could help all of us kind of help transition a guilty perspective to a hopeful perspective, because once I have clarity on what I'm scared of.
Speaker 3:It helps me prioritize, and when I prioritize, then I can attack the problem and start looking for solutions, and it's those flickers of light of possible solutions or possible answers that can get us further along in our journey for the best quality of life possible. Then I have hope, and hope is so energizing and so necessary to sustain yourself on this journey that, um, yeah, I just. I think it's pretty incredible that once you get a little further out in your journey, you can actually even use guilt instead of it trying to beat you up. You can actually take power over it and use it for your own benefit and your child's benefit.
Speaker 2:Okay, this episode has been so helpful for me as well as hopefully for our listeners.
Speaker 2:I am just so energized and just so excited about all the insights that and you know what? This is the fun part Every time Ashlyn and I talk, we get to the end of a conversation and we say we should have recorded that. Oh my gosh, it was so helpful. So now we're excited to be recording it. But so our grounding thought for today's episode is just to sit in that guilt when you have it and to recognize it, look it in the eye don't let it be the green-eyed monster that it likes to be and then to get it out, write it out, get it to share it with somebody and and I think you'll quickly the guilt will quickly dissipate and you'll go from fear to hope and have the ability to take that next step and recognizing. You know it's going to be an ebb and flow where it's like we said at the beginning. It's not like you get over guilt and then it never comes back again, but you get a heck of a lot better at navigating it, like you said, and using it as a tool rather than a stumbling block. So I am so excited about this episode and we are just thrilled that you tuned in.
Speaker 2:And 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 more about your personal journey, just like Ashlyn said in the middle of this episode, and we'd love to learn how we can support you. So you can email us at contact at charlotteshopefoundationorg. And, of course, last but not least, if you know of anyone going through this journey that could benefit from this podcast, please go ahead and share it, and we would just be thrilled to join that individual on their journey too, and share it, and we would just be thrilled to join that individual on their journey too.
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.
Speaker 2:We would also love to learn about your personal journey and how we can support you Reach out to us at contact at charlotteshopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast. Please share when hope is buried.
