← Don't Cut Your Own Bangs
Don't Cut Your Own Bangs
Finding hope. Raising a child lost in a complex medical system.
01:06:22
My guest, Ashlyn Thompson, is the co-founder of Charlotte’s Hope Foundation, a non-profit organization dedicated to supporting, encouraging, and educating parents and caregivers of children facing difficult health challenges. Ashlyn, and co-founder...
Loading summary
Transcript133 lines
- [00:00]
Ashlyn Thompson
Just a helpful hint.
- [00:01]
Emily Whiting
These are conversations between adults, intended for adults. There is the potential for some adult subject matter or adult language. Ashlyn Thompson, thank you so much for taking the time today on our rainy Friday afternoon to sit down and chat with me. I'm really looking forward to talking to you more.
- [00:35]
Ashlyn Thompson
I am very excited. I think it's going to be a really wonderful conversation.
- [00:39]
Emily Whiting
Yes, indeed. And so just to introduce you to the listeners. So Ashlyn Thompson is the co founder of a new nonprofit, Charlotte's Hope foundation, created with her dear friend Emily Whiting. The foundation honors journeys with their daughters who have faced rare and are still facing rare medical complexities. So welcome to the show. I've never interviewed someone who's founded a nonprofit organization before, and I know shockingly little about families and individuals and little kiddos that are navigating the world of rare medical complexity. So I think that this is, I think there's so many themes that whether this is your exact story or a story that's like someone can see themselves in, there's no, I don't think there's any doubt that we want our kids to be happy and healthy and we wanna feel supported and we need community. And so I think whether you're relating to this kind of in a broader way or if this is a story that is very near and dear to your heart and experience, I just welcome you all to listen. And Ashlyn, I'm so excited to learn from you.
- [01:41]
Ashlyn Thompson
Well, thank you. I am very excited to be here today and honored because every time we have a chance to share our story, the whole point is to connect with somebody who needs to hear that story. And this whole nonprofit world came upon Emily and I, you said to honor our daughters who both have faced and continue to face very rare medical conditions. My daughter Emory, who we most often call Em, she's, she's spunky, she's feisty. So Em is a little bit more fitting at times. She was born with bladder extra fee, which is there's on average maybe 300 kids a year in the US who are born with it. And it's, there's no known cause. They call it a fluke, which as a mom, I'm guessing you can relate. Not having a true reason or understanding how something came about that drastic, not acceptable is very hard to accept because I for quite a while just kept honestly assuming there had to be something that I did. And I beat myself up so much. But I can tell you that after a couple years worth of research, literally talking to experts around the world. I am in a place where I can say, ashlyn, you did not cause this. It literally was a fluke. It just happened. And you know what? She's here, and she's perfect, and we're exactly where we're supposed to be today because of this journey. While the pain has been unbearable at times, I wouldn't change it because of who it's making me and who I can see it's going to make her.
- [03:16]
Emily Whiting
Wow. Well, I thank you for opening up your heart and your story to share. Because, I mean, three, even. Even to kind of go back a little bit to the language of it only affects 300 kids a year in the US that. That sort of like that qualifier. And I'm sure that that's language that was sort of like. That was impressed upon you through, like, the medical community or medical providers, but only seems to minimize. I'm sorry. You take 300 babies and you put them in a room, and you tell me that's small Again, like, no way. I mean, that just.
- [03:56]
Ashlyn Thompson
You nailed it because, like, you know, there's all these romantic songs like, you're one in a million, but, you know, you're the world to me. All those. But that doesn't typically apply to medical conditions. That's often not the lens that it is looked through. And because of that, there are often a lot. You know, resources are significantly limited for rare conditions and availability of specialists who even know what it is. It's a much smaller pool you're working with. But to your point, my daughter and my son equally are my entire world. So to tell me that, well, this is a rare condition. Not as many resources go into it. Well, I'm sorry. My understanding is bladder extrophy has been around for plenty of years. So that's all these people who are growing up and becoming adults with bladder extrophy. So there is a very large pool for a rare disease who are actually living with it. It's not just the time of diagnosis that matters. And that's why I'm on this mission to just help parents know that your child is the most important thing in the world to you, and that's how you should live your life, and that's how you should advocate for them, that they are the most important person in the world.
- [05:11]
Emily Whiting
Yes.
- [05:12]
Ashlyn Thompson
And that's doing your job. Oh, sorry.
- [05:15]
Emily Whiting
I had so many. So many feelings. So many.
- [05:18]
Ashlyn Thompson
It can be emotional. It's super emotional to talk about, honestly.
- [05:21]
Emily Whiting
But I just felt this wave of anger, and I don't. I don't know if it's coming from, I don't know what place it's coming from, but I'll just. I'll voice it anyway. But it's like, what if we just took. Let's just shave off one of the billion dollars going into creating another fucking erectile dysfunction pill into deporting something like this. I mean, it's just, you know. But anyway, I digress. So I want to. Because there's so many directions. We could talk about how this has impacted you personally, how this has impacted your mental health, how this is bonded or created challenge. And like, there's a lot of directions to take. But I. Probably a good opportunity to invite you back. But one place I really wanted to start was this language that your platform is built on, turning pain into purpose. And what I'm curious about, specifically for you, if you're comfortable sharing, is how do you also leave room for the pain? And I'll share a little bit from my own experience just to kind of give that question some context. So, you know, I work in mental health. I work as a therapist. And I. So I have seen and held space for and have been a witness to people who are in some of their deepest, darkest moments and memories. I also have witnessed and experienced personally the power of that experience, not being what defines you, but being a part of you and carrying it with you. Like. Like the power of acceptance. And also. And that's not something anyone can do for you, but when the acceptance can be transformed into purpose, power, I mean, it really can. And I'm thinking back to my own. And this is something I've talked about on the podcast, so I'm very comfortable talking about it here again. But I. My first pregnancy, I experienced a miscarriage at 12 weeks. And I'm so sorry. Well, I appreciate. I appreciate you. You saying that. And there is. That experience made me more acutely sort of keyed in to the language we use around grief. Either to dismiss it, to brush it off, to push it away, or to make it really pretty and palatable. And in the beginning, I mean, being told things like, I remember in the early days feeling the weight of other people's pity and sadness for me, and feeling, and this is likely due to my gender and my personality and a whole host of other combinations, but feeling like I had to make it okay for them, that I'm struggling, and I can see some recognition in you, I will let you take the floor. I will say, like, the purpose that as I see it now, like, the pain is still the pain that loss is still a loss that won't be recovered. And I'm always mindful of, though I've found a purpose for this and there is meaning in this experience, the loss is still. That doesn't, it doesn't cancel it out. It doesn't say like, well, now a.
- [08:32]
Ashlyn Thompson
Trauma is a trauma forever.
- [08:34]
Emily Whiting
Thank you. Okay, perfect. That was great language. But what it gave me was this moment of reprieve and unapologetic truth in a way where I, you know, I'm very prone to self censoring and filtering and being very nice, but if I didn't want to see people, I just didn't see people. If I, if someone asked me how I was doing, I would really tell them I totally dropped fine out of my vocabulary because fine is nothing. Like, fuck fine.
- [08:59]
Ashlyn Thompson
I would say fine is fu usually, but at least in my experience.
- [09:04]
Emily Whiting
Yes, yes, yes. And so there's a resolve and a clarity that that grief gave me. And there's other things that came from it too. And what I want to circle back to is making space for the pain. And so I'm curious, how has this, how has this experience with your daughter and your friend Emily's daughter, Charlotte, how has this given purpose and also how are you still creating or leaving space for the trauma?
- [09:33]
Ashlyn Thompson
So to start, I think what would be most helpful is the foundation really came into play when I reached out. Like it all, it all started. I didn't realize what was building. Right. It had been. It was coming along all this way, unbeknownst to me. And when I received emory's diagnosis at 27 weeks pregnant, the bottom of the earth fell out and I fell through the hole and there was no end in sight. I often told people that I felt like I'd been thrown over a ship, wrapped up in weights and anchors, and knew that I was going down and knew there was nothing I could do to get myself free. Like that anxiety of I'm going down and there's nothing I can do about it. And it took me about five days. And then I reached out to Emily because Charlotte is older, so she's.
- [10:22]
Emily Whiting
Oh, gosh.
- [10:23]
Ashlyn Thompson
Charlotte would have been four when I reached out to Emily, who are almost four. And I just. I have an amazing support system. I have a beautiful family. My mom, my grandmother, my sister. Oh, my gosh. Like, I struck it rich and I am so grateful for them. But there was something missing in the conversations that I was having that wasn't hitting a part of me that needed attention. And it was talking to another mom who was currently going through the pain of your child in pain. I was already jumping ahead. Emory was no longer the child I was pregnant with. I was already in the hospital. I was already imagining all the struggles that her life could have. And I was reeling. And so when I reached out to Emily and we started talking, I remember after I got off the phone with her, like, just taking this breath and knowing like, no, I'm still not okay. But it was my first experience of talking to somebody who could feel with me versus for me. And I learned the power of that in that moment. And I continue to see that power. And to me, this doesn't just apply when it's something specific to, you know, with us, where it's. We have a child facing something horrible or you lose a child. I'm sure for you speaking to somebody who's. Elsa's experienced a miscarriage, there's a different type of conversation you can have. And it, Those are the conversations that leave room for your pain.
- [11:53]
Emily Whiting
Yes. Well, there's also, there's, there's less words because there's, there's, there's a baseline understanding you. I actually got teary eyed. I had a flash of a memory I haven't thought about in so long when we went into the emergency room because the, there were some challenges with, with the miscarriage and which were, I mean, things. So many things I didn't know that are never talked about, at least not in the circle of my life. They weren't talked about. So I was in the hospital for, oh gosh, I think like 14 hours. And with my husband and. But anyway, towards the end of my stay, we were maybe one or two hours away from being discharged. These nurses who I was going to, I'm going to cry. These nurses who had heard about what happened, they each came in one at a time. There were about five or six, I think, and I was on morphine. I'd had morphine for the first time. I'd never tried. I was like, oh, thank you, modern medicine. You're a miracle. It's like, what was I doing with all these vitamins? This shit is great. Anyway, that was a terrible joke, by the way. Listeners, please disregard. But anyway, these women, they just came in one at a time and they held my hand and they just shared their, their experience with it. They just looked me in the eye and it was like they were each saying, you're not alone, you're not alone, you're not alone. And they didn't literally say those words, but it was just like this Balm on a sunburn. It was just magic. That recognition is so beautiful.
- [13:25]
Ashlyn Thompson
It's a soul recognition. I would say that's why the words aren't needed. There's just this. I see the same light in you. And there's also something about talking to somebody who's further down that road, because that's where a lot of hope can come from. And I remember, like, having hope didn't seem like something I should be allowed to have or I didn't even think it was appropriate for me to feel hopeful at the time. I just felt like I was only supposed to be devastated. And then if I was talking to somebody else, I was worried about how they were feeling and not wanting them to be worried about me. I was just taking it all on.
- [14:02]
Emily Whiting
Yeah.
- [14:02]
Ashlyn Thompson
But when I started opening myself up to this, the circle that I ultimately created of people who had been there or were currently walking that path, knowing that they were further down the path made me realize, okay, I don't think. I don't believe in myself right now, but it doesn't mean that I'm not capable yet, you know, it doesn't mean that I'm not capable of doing this. Eventually.
- [14:27]
Emily Whiting
Yeah. It reminds me a little bit of something I've heard. Abby Wambach, the, you know. Yeah. Phenom soccer player. Yeah. She talked about, you know, women in professional sports and when she was coming up and how limited that. That, that exposure was. But she was like, when. When you see it, you can. You can imagine it. Yeah. So you saw an example in Emily of, okay, this is how this one person was able to, like, four years from now. And it. You just see. You see a light of possibility. And that actually, that skips me ahead a little bit to a question that I did want to ask you specifically about hope. Because I have. I question hope a lot, and I'll provide context for that. So when is it, in your experience working with other families or people who are in a similar situation as you are, once they find out what you do, you probably get flooded with questions or flooded with emails. I can just imagine. And then you've also created. You've created a community and a resource for that exact purpose and intention. So I'm curious, when do you find introducing hope the most effective? Like, when do you start talking about it? Because I think that particularly when I'm working in sessions, I find that being really crystal clear about language and context. And this is also pulled from the work of Brene Brown, that language shapes experience. So hope, I have found when working with women, say, who are in, like, really abusive or toxic relationships, you know, these adages of marriages work, and you gotta work hard. And I still have hope. I've seen hope keep people stuck in a lot of pain. Right. And I've also seen hope, or what is being called hope. I don't think that's what your. When you talk about hope in your language, I don't think that's what you mean. But I've also seen the language been misused to almost kind of be kind of delusional or magical thinking and not acknowledging maybe what needs to be changed or acknowledging a very real experience that needs to be called out. But I also see in your story that having that glimmer of hope kept you going in a seemingly impossible phase. I mean, you were 27 weeks pregnant, so.
- [16:52]
Ashlyn Thompson
Right.
- [16:53]
Emily Whiting
Yeah. So could you. Could you just kind of elaborate on hope and how you see it?
- [16:57]
Ashlyn Thompson
You're exactly right about. You have to be aware of how you introduce hope. You have to be. It's a gentle. It's. It's a gentle introduction is honestly how we typically look at it. First and foremost. We never look at somebody who's brand new to diagnosis and say, well, you should have. You can have hope.
- [17:15]
Emily Whiting
Yeah.
- [17:16]
Ashlyn Thompson
That's where you have to. That's one of the hardest things about what we do and what we're building is learning to be comfortable enough to sit next to someone in their pain and not try to push them past it.
- [17:27]
Emily Whiting
Yes.
- [17:28]
Ashlyn Thompson
That is one of the hardest things that I am learning in life, is to accept that not everything can be fixed and not everything can be made okay. But where hope comes in for us is that hope is something that can constantly be redefined. It's. When we define hope as one thing, it's no longer hope. That's. I don't even know what else to define it or what else to call it, honestly. But when you set parameters that hope only exists if the result is this. That's a wish, right?
- [17:58]
Emily Whiting
Oh. Oh, I just got that in a really powerful way. Yes. Because it seems there's, I think, a really nice mashup of, at least in the language that I saw in your resources, of hope and acceptance. And there's. And you're right, a wish, because that if you can accept what is known and real in front of you, it doesn't mean more can't be revealed or that things can't be uncovered, discovered, connected. But it's. What it sounds like to me is you're holding space for both Things to be true.
- [18:35]
Ashlyn Thompson
It's balance.
- [18:36]
Emily Whiting
It's the reality of this experience. And accepting that this is as hard as it is. This is where we are, or this is what. This is, what is known currently. And there's also space for this other thing.
- [18:47]
Ashlyn Thompson
Right.
- [18:48]
Emily Whiting
Yeah, I like that. It's. Otherwise, it's a wish. Oh, that's good.
- [18:52]
Ashlyn Thompson
Exactly. And the other thing about hope and the reason that it is part of our. Our name, Charlotte's Hope foundation, is because there is. We were actually introduced to this medical study by a fantastic neonatologist who we're fortunate to have on our board. And it's called Snyder's Hope Theory. And it's very interesting. I think you might actually really enjoy looking into it. But it's these series of studies that were done, and ultimately what it was focusing on was that parents who are able to maintain a degree of hope or being hopeful, where they're not defining that hope is only one thing, which for us often, and you know, in my scenario, is a hope is a cure or a hope is perfect health. A hope is growing up, being able to do everything independently, move out of the house, go get married, have kids, on and on. But hope is something that we constantly have to redefine. And I know I keep saying that word, but it's because it's been such a big lesson.
- [19:51]
Emily Whiting
Yeah.
- [19:52]
Ashlyn Thompson
The last couple years for me is learning that to embrace redefining words that I held on to very tightly, their meaning.
- [20:02]
Emily Whiting
We'll be back to the show after this short break. Have you tried journaling but haven't kept it going? Or do you have a journal right now, but you're stuck staring at a blank page? I'm here for you. I've got you covered. It's fine. Go to the Show Notes. Click on the link that says Treasured Journal. There you will find a guided journal that I have made exactly for you. It is made with you in mind. It has all the support you need for key areas of your life. It's really easy and simple. Click the link and grab a copy today. And now back to the show. Ashlyn, what I wanted to explore with you next was the goal of your foundation. So the goal to support, encourage, and educate parents and caregivers is part of your mission. And I was more curious, who did that for you in the beginning? Was it a person? Was it a community of people? Were there resources that you found? Did you have to kind of like hodgepodge and kind of pull this all together? I mean, it certainly sounds like Emily was one of those people for you. But I was curious, how did you fill that gap for yourself? And then when did you get the idea that other parents and families probably need the same thing? Right.
- [21:16]
Ashlyn Thompson
That's a great question. So it was definitely, if I look back at that beginning chapter, it definitely looks like a very messy amateur scrapbook. Lots of. Of pieces from here, you know, magazine articles from there. Google this, Google that. It really started out with, I think I mentioned earlier, I am gifted with this beautiful family. I have these rock solid women in my life between my mom, my grandmother, and my sister. And I'm just so fortunate that I have them, because my life actually began always having somebody in it who had health, who had some type of health challenge. My uncle was born severely brain injured, and he should have been completely healthy, but at the time, the doctor refused to induce my grandmother when she was pregnant with him, and she literally went almost two full weeks past her due date.
- [22:08]
Emily Whiting
Oh, my gosh.
- [22:10]
Ashlyn Thompson
So he lost oxygen to his brain. And, like, crazy story. That man ended up, you know, they ended up finding out that there was, like, I think there were, like, 13, some cases that were similar to my uncle's over that man's practice. So that was, like. That tells you how far things have come, right?
- [22:26]
Emily Whiting
Yeah.
- [22:27]
Ashlyn Thompson
But anyway, so that's my uncle Mark. And I often say that he's the most influential person in my life. And he passed away when he was 46. He shouldn't have even lived till he was age 6, but he never spoke a word. But I learned more from having him in my life than anybody has ever taught me up until the point I met my daughter.
- [22:48]
Emily Whiting
Wow.
- [22:48]
Ashlyn Thompson
And it's just been this really beautiful transition of, you know, I lost my uncle. It's been several years ago now, but just being around him, learning to love somebody and truly not needing anything from them.
- [23:01]
Emily Whiting
Yeah.
- [23:02]
Ashlyn Thompson
Is just a really great gift. And I was exposed to that from the time I was, you know, an infant. I didn't know anything different. I knew that everybody deserves love and you share it equally and you fight for them and you stand up for them. So that's just what I grew up knowing. But I will say this. I also grew up knowing at a fairly young age. God, I hope I never have to do this myself as a parent.
- [23:26]
Emily Whiting
Yeah.
- [23:27]
Ashlyn Thompson
I remember having that awareness that I love my uncle fiercely, and I love every person that we met because of him. But I remember being scared at an early age. I. God, I, I. Please don't give me this challenge.
- [23:40]
Emily Whiting
Yeah.
- [23:40]
Ashlyn Thompson
Well, here, Emory Is. And I thank God a million times a day for a lot of different reasons, of course, but I am. Of all the challenges that we have faced with Emory, and we will. I never lose sight of the fact how blessed we are that they are not developmental issues on top of the physical conditions that she is faced with.
- [24:00]
Emily Whiting
Sure.
- [24:01]
Ashlyn Thompson
And I don't take that lightly because that's. That is a whole other ball game to be a part of. So looking at that, you can see, like, I have this vast experience, truly, of being exposed to a lot more, I don't know, variety of people of, you know, life experiences. And so I had that to draw in with my family. Right. We had this wealth of knowledge and experience, but it still wasn't the same as. There's just. I don't know if it's not exactly like what you're going through. It's amazing how quickly you can pull yourself into your shell and say, nobody understands.
- [24:38]
Emily Whiting
Yeah.
- [24:39]
Ashlyn Thompson
And you almost feel. I even somehow convinced myself that I felt bad that I didn't let their support be enough for me. And I don't know if that's just a twist of trauma. I don't know if it was just.
- [24:50]
Emily Whiting
That I didn't let their support be enough for me. Are you referring to your family?
- [24:55]
Ashlyn Thompson
Like, so, like, my family support? Like, I remember feeling guilty that, like, that them trying to make me feel better didn't make me feel better if I wasn't. And. Oh, go ahead.
- [25:04]
Emily Whiting
I was just going to say that I'm wondering if part of that is connected to the making you feel better. It didn't have to. Maybe not. And maybe I'm reading into. In kind of mincing words a little too much. But it brings me back to an earlier part in the conversation that we first had with. There's a level of the conversation that doesn't need to be had with someone who understands something the way you understand it. And so possibly your grandmother might have been closer to that, given her experience with her son, but with the other family members, like your mother, she can relate to it as a sibling, as a sister, as part of the support network. But I wonder if their concern for you sometimes gets mixed up in their supporting you. And that.
- [25:54]
Ashlyn Thompson
That's a good point.
- [25:55]
Emily Whiting
That could be a. It's beautiful and it's challenging, but it is this other layer. Maybe, maybe not. I'm really just kind of like, throwing. Throwing stuff.
- [26:04]
Ashlyn Thompson
No, I mean, that's a very valid way to look at it, honestly. Because, I mean, honestly, just hearing you say that out Loud. I'm like, that actually makes more sense to me. And it also then helps it make more sense why when I talked to Emily at the end of that first week, this mom who literally had a child, who was young, who had had, you know, had found out while pregnant that she was going to be facing these really hard physical challenges and who knows what else. It just felt like we were sitting on the same seat of a bus ride, going to who knows where, and I wasn't riding it alone.
- [26:39]
Emily Whiting
I just got chills when you said it. The bus seat makes a lot of sense. And I, I'm. As you were talking, I also had this thought that Emily doesn't need anything from you because, because of how you entered into that relationship. On. It's like deeper than peers. I can't think of a word deeper than that. But she's not, she's certainly a caring. I mean, and I don't even know her. And I can sort of assume on her behalf that she's a caring, compassionate, incredibly loving person. Sure, now that your relationship has evolved, you and your wellness and your overall well being and your happiness likely hold more weight to her. But at the time you were sharing experiences and the outcome of your experience didn't directly impact her. Where like your level of happiness or your amount of suffering, like as a human being on the planet with any capacity for empathy or compassion, you're going to feel something. But your mother, your father, or, you know, the, the people who love you, who support you absolutely needed to. They were invested in the outcome of how you felt and so your suffering contributed to theirs, which is not, which is not your responsibility, not your fault. It's just, it's, it's a, it's like a double burden, or it can be. It doesn't, it may not always be that way. But like I would imagine, whenever my daughter's hurt, it pulls something in me, right? It, like it twists. And so I would imagine for the loved ones that were invested in you, seeing you tired and exhausted and all of the things I would imagine would go into that, you can also sense their need for you to get better on some level.
- [28:20]
Ashlyn Thompson
Oh, absolutely. And with Emily, I could lay down my burdens and say, here's everything I'm carrying. Here's everything that's weighing me down. And I didn't feel like I had to pick up anything that she was carrying.
- [28:34]
Emily Whiting
Oh my God, that's the best. That is the best.
- [28:39]
Ashlyn Thompson
I think that's why as much as I benefited from having the love and support That I did around me. I mean, that was a critical part. But that was the reason when I talked to Emily, who I frankly did not know very well, honestly, going into. So we had met at one bachelorette party one time, like three or four years prior. I was able to. To realize I can take a breath. I don't know if I'll take another one after this, but in this moment, I can feel myself breathe again. And I didn't realize how starved I was for oxygen at that point. And that was enough to probably give me my first real flicker of what hope like. Of hope. And that hope was centered around the idea of, I can survive today, just having this moment. That means I can at least get through today.
- [29:27]
Emily Whiting
So that. Oh, my goodness, that was really profound. And I want to go back to the. I could take a deep breath, and I didn't realize how much I needed oxygen. That reminded me of something. I think it was Eckhart Tolle who originally said it. He wrote the Power of Now and A New Earth. Oprah is a big fan of his. Um, I'm more. I'm more providing context for anyone listening who's like, what's this person? But I. It. It may have been him or it could have been Pema Chodron. And they were talking about presence and meditation. And, you know, there's a lot of, I think, tropes and stigma and a lot of different ways, a lot of different feelings maybe meditation brings up. But what I love about how I've heard those two individuals talk about it specifically is that an entire meditation can be contained in a single breath. The only thing is required is presence.
- [30:19]
Ashlyn Thompson
Oh, that gave me chills. I love that. Meditation has become, honestly, my lifeline since this journey started.
- [30:27]
Emily Whiting
Well, and I. And I could. You talked about when you were. When you received your daughter's diagnosis. You were 27 weeks pregnant. You were projected into a future. You were likely brought back to past events. So you were everywhere, but in a moment. And I don't know if I would be capable of being any different, but being kind of thrust in appointments and projecting, and I'm actually not familiar at all with your daughter's diagnosis of bladder extrophy in terms of what does progress look like or how is it measured? But, I mean, it sounds like from what I just know of disease, it's like months, years. There's a countdown. There's a timeline. There's. There's all. There's this huge sense of projected time. Robs you of today or can.
- [31:19]
Ashlyn Thompson
And just now, right you just. You lose all sense of now.
- [31:23]
Emily Whiting
Yeah. And that Emily's. Emily's presence with you without requiring anything of you. She didn't need you for anything, and she was just with you. I can't think of anything more generous than that.
- [31:39]
Ashlyn Thompson
And that is exactly what we want to carry with us as part of Charlotte's Hope foundation is we often refer to ourselves as we want to be that lighthouse in the storm. Because no matter what the diagnosis is, no matter when the diagnosis is or often we make sure we point out prognosis because we realize we're going to encounter a lot of families who perhaps their child may not live. It may not be something they can survive. They may not make it through pregnancy, and that's. It's over. I mean, even right now, as many times as I've talked about this for the last two years, I still get chilled every time I say that. And I hope I never stop doing that, because I never want to become desensitized to something that matters so, so much. But to be that light for those families who are on that ship in that storm, because the reality is Emily and I can't go on their boat. We can't steer the ship for them. We cannot finish that journey. We can't even tell them what to do. But we can be that light that shows them, one, you're not alone in this darkness. And two, light does exist, even when it feels like it doesn't. We promise it's there, and here is some proof. And if you can focus on those small glimpses of light, that can be enough to help you navigate around those big rocks that want to stop you in your tracks. And. And again, a lot of times, it's just about getting through that one day. And we realize that might be a lot of what Charlotte's Hope foundation does for people is we're there for that one day that is just too much for somebody. They're not going to need us every single day, and they're going to find, hopefully, other resources that we want to lead them to or that they'll find on their own. But there are going to be those days that everyone faces where it's just too damn much and you need a reminder it's okay that it's too hard, but you're strong enough.
- [33:31]
Emily Whiting
It just occurred to me, with reference to your grandmother and your uncle and even what you spoke to in the very, very, very beginning of. Because bladder extrophy is considered rare, 300 kids is still too many kids. But the sense of advocacy I mean, I didn't see that language specifically, but this level of, like, just advocating for what you need and what's right or what your kiddo needs, like, it brought back a pretty visceral memory. I hadn't thought about this until I was just talking to a friend yesterday about our birth experience with our first kiddos, and I had a epidural that was done incorrectly. Oh, gosh. And I just wasn't giving myself enough credit. Granted, there was a lot going on in this particular moment, as one can imagine, but I walk through life wanting to like people and hoping that people like me. And when I'm not in a healthy place, I'm, like, desperate for people to like me. So I walk through life with the assumption that people are good, that I'm going to like them. And so, again, when I get that. When I get that gut feeling of, no, something's off about this, something's off about them, it's. It's something that I'm. I'm really. It's like a muscle I have to constantly actively work on. One, to give myself credit and two, to trust it. But anyway, this. This particular person that came in and gave me the epidural, everything in my body was like, this isn't the dude. Not the. Not the person. Nope, nope, nope. And I got it. And it didn't. It wasn't right. And I knew it wasn't right, and the nurse who was even in the room knew it wasn't right. Also, by the way, I don't think it's right that they make you sign, like, an encyclopedia's worth of documents while you're writhing in pain.
- [35:19]
Ashlyn Thompson
No kidding.
- [35:20]
Emily Whiting
Because it's like you don't know what you're signing, and they know you don't. Like, let me just say.
- [35:25]
Ashlyn Thompson
Let me call my lawyer real quick.
- [35:26]
Emily Whiting
Right, Right. I need to get my attorney on Zoom, you know, while I'm contracting. But anyway, anyway, that's another. Another podcast for another day. But, yeah, I didn't feel empowered to say no because I. In my mind, I didn't have any reason to say no to this person other than a feeling, and I didn't listen to it. And of course, I'm not. I'm not blaming myself, but I didn't listen. The outcome was what it was. It wasn't good. Had to be redone a few hours later. Oh, gosh. And then my daughter was born, and then it just. You know, and then life went on. But I. That experience will inform if I have that feeling. And odds Are I won't. I mean, I think more people are probably gonna be good than not, but at least I certainly hope so. But, yeah, if I get that feeling again, I don't need it to make sense.
- [36:13]
Ashlyn Thompson
No. And nobody does. And that feeling, it's your body or it's your child, you are completely entitled to whatever that feeling is telling you, because it's that it's yours and it's your child. And I'm glad that you started to step into advocacy, because what I just talked about, that is, that is part one for Charlotte's Hope Foundation. That is our way of laying the groundwork for saying, I often say we will someday soon be Charlotte's Hope International, because I want to be that first stop for any doctor, any pediatrician, any specialist, any maternal fetal specialist, to be able to say, you know, we've got this news. We have this organization that they can get you started, but you don't have to face this alone. There are so many incredible resources out there, so many amazing groups that do fantastic things that honestly, Emily and I have to kind of watch ourselves and just. And just remind ourselves to be grateful that we're finding them now so we can share them with others. But I cannot tell you how many times she and I have looked at one another and said, where was this when we were here? Why did no one ever bring this up? Or why did it take so much work for us to find this when we really needed it was at the time we didn't have the capacity to put work into. Should have just been there. And so what that led into was one wanting to create this library of resources to make it easier for people to find what they want to what they need to find. But to take it further, what we're really after, long term, where we really want to climb our mountain and put our flag is on advocacy. Because if we can get to families within the first, we'll say even six months of their experience, we'd like to get there sooner than that. But the sooner we can get to them and we can bolster them and we can encourage them and we can help them realize you are not going to climb Mount Everest alone. The sooner they feel like they are grounded, the sooner they can make that shift to becoming an advocate. Because when you are so overwhelmed by that emotional landslide that you have every right to be experiencing, and I would challenge if you don't think you are, you need to maybe talk some more to somebody. Because that might just. That's probably a coping mechanism. If you think you're fine. You don't need to be fine in this moment.
- [38:37]
Emily Whiting
Well, it's like the Saving Private Ryan opening scene. I mean, that is an older movie to be referencing where it's where, like, the soldier lost his arm and he picked up his arm and he's just walking away with it, like.
- [38:47]
Ashlyn Thompson
Right.
- [38:47]
Emily Whiting
You're so likely in shock, to be honest, if you're.
- [38:50]
Ashlyn Thompson
Exactly. And that's. Yep, you're right. It's. Shock is really what that is. But the sooner we can show up for them, the sooner they can show up for themselves and their kids.
- [39:00]
Emily Whiting
Mm.
- [39:01]
Ashlyn Thompson
Because the biggest shock of everything that I experienced, and the same for Emily, we did not even realize the word advocate was something that was going to be part of our journeys. And looking back, we can almost laugh, but not really, because until you experience it, you really can't have your eyes open to the necessity of it. I just thought when I went into the hospital and I handed my child over to that nurse to walk back, to walk her back to the O. R. I knew it was torture. I knew it was the last thing in the world I wanted to do, but it was the only thing that I needed to do. I thought from there, everything was just going to be me showing up and being mom, loving on her, standing next to her, et cetera. I did not realize that I was going to have to go to bat for her multiple times a day, every day. And that I was going to have to challenge people who have way more letters after their name than I ever want to come after my name.
- [39:59]
Emily Whiting
Yes. Yes.
- [40:00]
Ashlyn Thompson
And I was going to have to stare down people who were going to tell me that I was wrong, and I was going to have to dig in really deep and say, you know what? I'm her mom. I know her best, and I know that I am right. Because your 5 minutes with her is not enough to inform you of her of making a decision. So here's what you need to know. And that right there, that experience was what started to ignite it. It started with a fear, honestly. And I. I don't know if this was just personally for me, my faith journey, if this was God helping me to see what was inside of me. But I began obsessing over those kids rooms that I would see down the hallway where there was hardly ever anybody in there except for nurses. And it was because their parents couldn't be there all day during the day. They had to work in whatever situation. And my heart was just breaking over and over and over again. And then I Just started asking myself all these questions like, well, what about the kids whose parents can't be there and who don't know what they need to advocate for them? Or what about the parents or the caregivers who don't have a strong family and support circle, you know, empowering them to be able to advocate. What if somebody doesn't even know what it means to advocate? What if they have total white coat syndrome and are terrified and at the end of the day it's their child who's not getting what they know that they need them to have, but it's fear stopping them.
- [41:21]
Emily Whiting
Well, and gosh, white coat syndrome, that's such a good thing to bring up too, because I mean, if we even think back to early childhood development, just to put my therapist hat on for a second, certainly in our culture, but it's not only our culture to respect authorities, respect your elders, trust your parents, and sometimes there's plenty of examples of people in a position of leadership that and let's give and let's just, let's weed out like all the fray we could get into and say doing the best they can with the best that they know still, still make the wrong choice for you being. And I'm seeing this as a Midwestern quintessential good girl. Saying no to an authority figure. I'm almost 40. I'm almost 40. But saying no to an authority figure elicits this. I'm going to call it anxiety, but it's probably something else. It is like my nervous system just starts to rattle like Danielle, don't you. It's almost like I get this, like this like tone, this like finger writing. Don't you do it, don't you.
- [42:24]
Ashlyn Thompson
And it's not almost 40 year old Danielle. I would guess that saying that it's six year old, eight year old Danielle.
- [42:30]
Emily Whiting
That'S saying that 100%, 100, 100,000%. But yeah, I think that that is. Love is a powerful thing. And so the sense of your daughter, your advocacy, your work, it's, it's. I don't see fear as what's propelled you forward into that. It feels like, it feels like love.
- [42:53]
Ashlyn Thompson
And I appreciate that. That's definitely a more positive way to spin it. I think at the time I had very severe, I say had very severe PTSD after Emory's hospital stay because part of my advocacy journey was ju. Was jump started by the fact that Emory almost died twice that first night due to completely accidental errors. When it comes to medical professionals, I know that every one of Them has the very best intentions. Nobody was. Would ever do anything on purpose to put her in harm's way.
- [43:25]
Emily Whiting
Intention and impact, that were very different things, and I think also need to be accounted for as different. I apologize. Please go. Please continue.
- [43:32]
Ashlyn Thompson
No, you're okay.
- [43:33]
Emily Whiting
And.
- [43:33]
Ashlyn Thompson
And it was because, for the. Let's see, we got home August 3rd, and it was, I think October 14th was when I had the final call with the director of safety over the hospital, and he confirmed and was able to give me explicit details about the policies that had been created to rectify, you know, as best they can, the problems that occurred or the holes in the system that led to Emory's life almost being lost twice within a matter of hours. And it was two separate incidents that should have never been able to happen, but they did. And it took, coming out of that, just the trauma of experiencing that, honestly took so much to climb out of. But with. After about three days, once I started to get more information, then I. I was a dog with a bone. And once I had enough information, I was not letting go. And I know it got. I mean, every week I was in the hospital, it was. I need to speak to somebody about what happened because I haven't heard the answer to what's going to be done to make sure it doesn't happen to the next kid. And I called either every week or every other week until it was completely done in October. And I am very proud of that hospital. I mean, I really mean that. That I'm very, very proud of how they handled it, and they took it very seriously. But it definitely opened my eyes to things that I never would have seen. And I think this is all part of my journey. I can't say for sure, but I'm very grateful that my daughter was strong enough and healthy enough going into it. She was able to survive that, because I could be very easily telling a different story in my life. And I'll never stop thinking about that. It doesn't blind me now because of a lot of time spent in EMDR therapy, but it is definitely something that I keep close to my chest, and it informs a lot of the decisions I make, including why Emory is about to be the first American patient to have a surgery in London, England next month for her rare condition, despite doctors here in the US saying, well, we don't really know much about it. And, you know, it's. We're not sure we understand it, so that's why we're not really doing it. We just don't have enough. Not. We don't have enough knowledge about it.
- [45:47]
Emily Whiting
It's the code for there's no money in it.
- [45:49]
Ashlyn Thompson
Well, honestly, I mean, that could be part of it.
- [45:52]
Emily Whiting
Maybe that's just a cynical thing. I don't know.
- [45:55]
Ashlyn Thompson
Oh, no. I mean, I think, you know, I have questions about. I have a lot of questions. And I don't necessarily blame the doctors, to be very honest. I think it's the. Who's going to. Who's going to approve the doctors going over there to get the training and to bring it back, and who's going to be the ones to take it through whatever the whole hoopla of insurance processes are to get it to be something that can be approved and et cetera, et cetera.
- [46:19]
Emily Whiting
Well, gosh, I mean, I think that that would almost be another hour if we're going to talk about advocacy. I mean, it's more than we have the time for today. But how you were able to get your daughter into a surgeon in London.
- [46:32]
Ashlyn Thompson
You nailed it earlier. It's honestly as simple as love. I think that's the best way to look at it. It is. It's. I think when we. Any of us, when we embrace love as our superpower, as your cape, you can. You really can get through anything and achieve anything as long as you keep leading with that love. And you just don't take no for an answer. Because that love is truly the most important thing. Because I can tell you this. The Ashland before Emory was not this strong. I would never have pushed past the doctors like I have. I would not have ever thought that I was smart enough to read the medical papers that I have and spend hours Googling them to understand what I'm reading or seeking out other families whose children have had the surgery and what has their experience been, and just. Just pushing. But it's all fueled by love. And I'll never stop doing that for either of my children. And now I'm on this path that I'm going to help others do it, too. Because what else is life really about other than to literally empty yourself of all the love you possibly can? That's how I want to go out someday, knowing that there's not an ounce left of myself. I want to be able to say, oh, I'm trying to remember his last name. His first name is Leslie. I think he's a really great motivational speaker. But he always. He does this speech and it's. I want to die empty. And I just. I really hold on to that. I want to go out someday feeling like there's literally Nothing left inside to give. And I'm not going to regret it.
- [48:01]
Emily Whiting
I'm going to wish something. I'm going to. Yes. And that for you, that's an old improv thing that holds value for you. And I firmly believe. And a belief is just a thought. We keep thinking, but I believe that love is reciprocal. I don't. You can't put it out without it coming back to you. So I don't know if you'll ever run empty. I think. I think love is infinite and reciprocal. So my hope. My hope for you is that you never run dry, that you never run empty, and that you're so full. You are. It's like you're satiated after the best meal on your last day because all the love you put out has come back to you. But that's just. That's just. That's just my little spin on top of another beautiful sentiment. But I want to ask you, speaking of keeping you full, you wrote. I read the. So dark chocolate is your daily vitamin. Please tell me more about this. Please tell me more about this, because I think in all of the seriousness and the gravity and the importance of all the things we've talked about, what I love about this little dash of dark chocolate humor is that there's still room for lightness and pleasure and maybe survival. I mean, dark chocolate can be survival. Like, I'm. I'm holding on to.
- [49:11]
Ashlyn Thompson
I'm pretty sure it has antioxidants in it, too. Like, there are definitely some health benefits to dark chocolate. So I'm sure I'm taking that one to. I'm holding on to that. So I had, like, I am enjoying getting to see what apparently was myself and my daughter, because Emory is apparently the exact same way. I was like, you can't find Emory at my mom's house. Then you know, to go check the M and M jar that gets moved around a lot. And they are dark chocolate M&MS. That girl has been able to find those since she was up on both feet. But, yeah, no, chocolate is just. It is funny. Like, I. I really care about health and. And fitness, and it's mostly because I care about how I feel having, you know, had so many health and crazy health things occur in my family. I feel like every year I become more aware of what I'm doing, how it impacts not only me, but my family. But chocolate is the one thing that I will never give up, nor should you. And I will say this, I have been far more consistent with chocolate in my life than vitamins. And I'm still here, and I'm doing okay. So I think, you know what it is, that little moment of a day that I know I'm going to be happy in that split second. So why on earth would I ever stop doing that?
- [50:26]
Emily Whiting
It's called soul food for a reason. There is a.
- [50:29]
Ashlyn Thompson
Like, Amen.
- [50:31]
Emily Whiting
I recognized a season of depression I was in years ago through craving hot chocolates, which that was never a drink that I was, like, particularly, like, in love with as a kid. I don't have a problem with it, but it was never something I was drawn to. But I kept being drawn to hot chocolate during this season in my life and through letting myself follow the pleasure and the indulgence of it, because I couldn't justify it for any reason, I realized, oh, I'm deeply. I'm in a season of unhappiness. There's something about this hot chocolate that help me kind of unlock that.
- [51:08]
Ashlyn Thompson
Now you've got me thinking more about chocolate and the soul connection I have with chocolate.
- [51:11]
Emily Whiting
There is a soul connection. There is.
- [51:13]
Ashlyn Thompson
There totally is. It's got to be a part of my. I'm sure, like, anytime they do labs on my blood, there has to be something that shows up in it that reveals chocolate.
- [51:23]
Emily Whiting
The deep brown. The deep brown vein that runs straight to her heart.
- [51:27]
Ashlyn Thompson
Yes. But I think what's great about it, or some, like, the reason I'm consistent is because something as simple as chocolate, there's no effort to enjoy it. How few things in life are there that we allow ourselves to have that don't require effort to just enjoy it?
- [51:44]
Emily Whiting
Mm. That's good. That's really good. And I. So. And it's probably more true. More. Most of the time that pleasure doesn't require a Tahitian vacation. I mean, don't get me wrong. I'm not going to turn that down. Who. Who would turn that down?
- [52:01]
Ashlyn Thompson
I'll meet you there. But.
- [52:02]
Emily Whiting
Right, let's go. Let's go. But, yeah, I think that it's similar to self care, and we maybe even touched on this earlier as well, that there's a whole industry now behind making self care a project and part of things that you need to purchase. Like, there's a process to it. And so. And I do think there's some value to some of those things. It's not. I'm not kiboshing all of that, but more to bring it back to what you said of simple, no effort. Simple, no effort. Just finding those little bits of pleasure that you don't have to Earn you don't have to work for. And it just requires nothing of you. I think that that's. There's really something to that. That's yummy. And I want to. I'm going to skip ahead a little bit because I want to. There's a quote from Emily's book, she Is Charlotte, which will be linked in the bio as well. So if anyone wants to learn more about Charlotte's Hope foundation, or you want to learn more about Emily's journey with her daughter Charlotte, there's a book that she's written about it. But this is a quote from the book. But if her own mother can't dream of thriving, then who can? I must hold onto the hope while still living the daily reality of the diagnosis. My question about that is, if I can't dream of her thriving, then who can? Who must hold the hope while still living in the daily reality? That really seems to sort of encapsulate the whole theme of really everything we've been talking about. But where are you holding the hope and then also still living in the reality? Like, how are you managing that currently?
- [53:45]
Ashlyn Thompson
Right. I think it depends on the day to be very fair. For me, where I am right now, I am putting a lot of hope in the unknown. But I'm also choosing to put a lot of hope in who I know Emory can grow to be and not letting myself put so much responsibility just on myself, which is. This is something new for me. Because what I'm trying to do. What I'm trying to do is to create space or allow space for Emory to grow up and be her own person. Who will eventually be the one to take over her health? Who will be the one to decide this is how I want things to be, or this is what I want to strive for and how I want to live my life right now. Every decision I have made for her or every time I even think about making a decision for her, I jump out of the now and I go to the 20 years in life. Or what does it look like when she wants to be a mom? Based on the decision I make today, I can't tell you the number of times I thought about canceling the surgery in London simply because I convinced myself I can't live with myself if I'm wrong. What if I make the wrong decision and I ruin my daughter's life? Or she grows up and she can't do something because of this and she hates me now? This is a very. When I say it out loud even again, I'm like, this conversation doesn't. Isn't the most logical, but it's a very real conversation that I have with myself. And in the moment, I very much believe it. But what I have to remind myself, and I'm so grateful that Emory shows her beautiful spirit to me every day. I mean, this girl is just out of this world. Like, everybody should have the chance to know Emory or someone like her. She's just magnetic and she is a force, and she just radiates this love and light. I mean, it is crazy the number of times people have met her and not known her story and have told me this child is just so happy. I mean, like, it's like she's just grateful to be alive. And it literally. That has been said to me no less than 10 times. And to hear something that frequently and to hear somebody describe a child as being grateful for life isn't what I would consider a very common description.
- [56:11]
Emily Whiting
No, no, no, no one. I mean, I adore my child. No one has ever said that about Logan. Like. No, I mean, that. That is a really unique and special magic. She. It sounds like she carries.
- [56:23]
Ashlyn Thompson
She does. And. And when I stop and allow myself to focus on who she is now, that's when I can help, you know, talk to myself and take a breath and work on allowing that space for her to eventually become who she's going to be. I have hope for what I want. I want her life to look as easy as possible. Right. As any parent does. I want her life to have as few challenges as possible. I don't want any hurt. I don't want any pain. But that's also completely unrealistic because even without this diagnosis, pain and hurt and challenges are part of life, but they also don't have to be a. The bad part of life. They can. You know, those are things that we grow through, that we learn through, that connect us to others eventually who become part of our lives, that we need in our lives. And so I'm not. I feel like I'm probably droning on a little bit, but.
- [57:20]
Emily Whiting
No, no, I mean, it's just. It's a big question to answer, and you're also exploring it in real time, which it makes sense. And I think that's a really incredibly honest and authentic response. And I love that you acknowledged this idea of logic so often for myself, but certainly when I'm working with clients, I think there's this sense that as an adult, I don't work with minors. So as an adult that we. Logic is key. And I could probably get into, like, all the sociological breakdowns of why we kind of dismiss emotion and we prefer to live in logic. 1. It feels more measurable. Feels more measurable, and by that lens, maybe more true. I also think there's a little bit of a patriarchal lens in that as well. Logic is considered a little bit more masculine, where emotion is usually more accepted in the feminine. So I think there's a lot. There's a lot of layers to that. But the truth is we're emotional beings first who develop the cognitive ability to think and reason and recognize patterns and all of that. We're. We're feeling beings who think, not thinking beings who happen to have these inconvenient feelings.
- [58:31]
Ashlyn Thompson
It's like, oh, my gosh, the number of times I have called feelings inconvenient, I can't even count.
- [58:38]
Emily Whiting
There's. I mean, they are. They really are. I love that's. The ocean is such a great metaphor for emotion because it's like sometimes the water is really calm and beautiful and you can body surf, and these emotions are fun and light, and sometimes it's like, what the fuck? I just got smashed in the face and beat against rocks. Like, oh, these emotions. It's just. I mean. And yeah, we also can't control the ocean any more. That can. We can control our emotion or we can't control the ocean anymore. We can control our emotions. Well, that was a mouthful, Dr. Seuss future book. But also, this is the other fun fact that I love to tell clients who really like to identify as logical thinkers. Thinking happens to you all the time. You are not in control of every thought you think. You literally cannot be. So the thinking that happens to you is often rooted in an emotion we're just not in touch with. And. And so when you bring the internal dialogue outside, like you just did, you did just now, again, in real time on the podcast, you're like. You said these two things. You're like, I know when I say them out loud, they don't make logical sense, but that is how you get any perspective on them. You either write them down, you share them to a friend, share them to a therapist, and sometimes even just literally saying the words out loud, it helps you hear it in a different way than it just then. It just rattles in your head, and you create space between the thought and you, which allows you to get perspective on it. But I just thank you so much for opening yourself up in that way and sharing that part of where you are, because I think so much of what we talked about. Is past tense and things that are have been processed. But I really appreciate that. Just glimpse into where you are now, and I feel like we need to connect again and get. Because I'm sure listeners can be like, well, wait, how did. How did it go? So maybe we'll. We'll give it some space and time. And if it ever feels right, I'd love to have you back. But before I say our final goodbyes, I would love to know any iteration of a don't cut your own bang moment that you feel comfortable sharing.
- [60:41]
Ashlyn Thompson
I was thinking about that a little bit, and the one that came to my mind immediately, which tells me it's very appropriate. So, quick backstory. When I had my first child, my son Cole, that pregnancy, I was very fortunate. It was like the, like, the quintessential, like, basketball bump. Like, only place that I had looked pregnant was my belly. Of course, I didn't feel like that, but, like, looking back at the pictures, kind of how, like, you always so many of us say, like, I wish I was as fat as I thought I was in high school. So it was kind of that whole thing, like, with my pregnancy, that person, like, I really did not appreciate how well I carried that one. And then I had Emory. Well, I had developed ulcers during my dad's trials, like, after his stroke and his, you know, his really long battles with that until he passed away. So when I had became pregnant, I still had the ulcers. Well, apparently pregnancy really, really inflames ulcers. So it was horrific. Tons of pain. And the only thing that would help a little bit was, like, the snacking. And it was out of control. And it drove me crazy because I knew I wasn't hungry. But it was the only thing that would, like, keep the pain at bay so that I could actually get maybe a few hours of work done a day. So I definitely did not end up looking like I did my first pregnancy. Which, looking back, I'm like, it's fine. Who cares? It doesn't matter. But this is where it turns into the don't cut your banks moment. So remember, so I have Emory. I know it's coming. There's been a little bit of stress, right? So focusing on my health and my body is not number one priority. But because of my history, I'm somebody who did struggle with eating disorders that started in middle school. That tends to be my go to control mechanism. When I can't control things around me, I start trying to control food, and it's usually hypervigilant. As in, I can't control this. So what I'm gonna control is my intake and watch how little it can be. I have no idea why that happens, but I attempted to do that, and it turns out I was too stressed to do that. And that actually freaked me out that I couldn't control myself that way for the first time in my life.
- [62:47]
Emily Whiting
Wow. You were too stressed to rely on the mechanism that had always worked, which was an eating disorder.
- [62:56]
Ashlyn Thompson
Yes. So after we got home from the hospital, I don't know what it was just. It was still just grasping for control. And the fact that that hadn't worked, I was like. I was like. I couldn't accept that because it had always worked. So I decided to call my doctor's office. And looking back, I kind of feel like I should talk to them and say, maybe you don't accept clients as quickly after having had a child. But I signed up for the Ideal Protein program that is like a monitored program for changing your diet. And it's basically like keto on steroids.
- [63:28]
Emily Whiting
Oh, my God. So.
- [63:29]
Ashlyn Thompson
But where I hit rock bottom, and this is where, like, this is why I call it. I refer to this as my don't cut your own bangs moment. Because looking back now, I can see no wonder. This was my rock rock bottom, because I did Ideal Protein. You're supposed to weigh yourself every Friday, like at the office. So I went in on Monday, got my kit, started doing all the eating. By Thursday, I was so sick with this keto flu and felt so horrific that I know that a lot of people push through. And props to people who that works for. I know there's a lot of people that have had huge success with it. That is awesome. This was not where my headspace and my efforts needed to be at this time. I was avoiding dealing with trauma is what I was doing. And so, yeah, I did not show up for my first weigh in on that Friday. And it was the moment I needed to honestly laugh at myself and go, why am I worried about this number on a scale right now? Or whether or not I'm in this size or one size smaller when we literally just survived hell. That was finally my aha. Moment was when I got to what should have been my breaking point.
- [64:35]
Emily Whiting
Yeah.
- [64:35]
Ashlyn Thompson
And then it was like I didn't trust myself. So I pushed it one step further.
- [64:39]
Emily Whiting
Yeah.
- [64:39]
Ashlyn Thompson
And then I realized I've got nowhere else to go. And it is just the only option is to give myself some grace. And I've been on such a better health journey since then. And I'm really proud to say, like, honestly, this is the longest I've gone in my life without reverting back to basically controlled, controlled, starving.
- [64:57]
Emily Whiting
Congratulations. Thank you. That's a big deal because you're still also in it. Like, you're not. You're preparing to go to London. Like, that's. That's really powerful. And thank you. Thank you so much.
- [65:11]
Ashlyn Thompson
You're welcome.
- [65:13]
Emily Whiting
Well, this has been a pleasure. Beyond that, I mean, and what a story and what a mission and what great work to be able to extend and connect to others and champion. And I just want to thank you so much for your time and anyone listening. All of the information that has been referenced as far as Emily's book, Charlotte's Hope Foundation. It'll be linked in the show notes, so you can check that out. You can learn more if you or anyone that you know personally or even just through the grapevine. I mean, if nothing else through this, what you've heard is that if someone even 10, you know, was the seven degrees of Kevin Bacon removed from you could potentially be impacted by this or a situation like this with their family. My gut tells me my hunter is. And it sounds like. I think Ashlyn would agree. It. I don't know if extending this resource like it's okay if it comes from a virtual stranger.
- [66:13]
Ashlyn Thompson
Absolutely. Everyone knows someone.