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
Building Brave Kids Through Medical Play: Tackling Medical Trauma & Normalizing Care with The Butterfly Pig
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MaryJenner, a nurse with a creative heart, founded The Butterfly Pig after writing a children's book about embracing differences—a theme that would become central to her mission of transforming pediatric medical experiences through play. Her company creates realistic medical simulation tools that children can use with their favorite stuffed animals, helping them process everything from IV placements to ostomy care in a safe, empowering environment.
The power of these medical toys extends far beyond simple distraction. When children experience procedures as something happening to them, they often feel powerless and afraid. But when they can parallel process by caring for their own "patients," something remarkable happens—they begin to understand, cooperate, and even take pride in their medical journeys. Ashley shares how her daughter went from requiring restraint during stoma care to proudly showing her stoma to friends at school after playing with a doll that had the same equipment.
This transformation occurs because children naturally learn through play. By creating approximately 80 different realistic medical devices scaled for toys, The Butterfly Pig taps into children's innate processing mechanisms. Parents and healthcare providers report children who previously couldn't sit still during procedures becoming engaged participants when they have their own medical tools to work with. The benefits extend to siblings too, who develop understanding rather than fear when they can engage with medical equipment through play.
What began as a creative project has evolved into a movement that's changing how families experience healthcare. The Butterfly Pig has introduced a Wishful Wings program where supporters can purchase toys for families who need them, creating a community of care around children with medical needs. As Mary explains, each medical experience gives children "a different type of superpower" they can eventually use to help others, transforming challenges into strengths that shape who they become.
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Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, Empowered by Hope, is here for you, Though we wish you didn't know this heartache. We're so glad you found us so together we can walk this journey in hope.
Speaker 1:Welcome to Empowered by Hope podcast. It's your co-host, ashlyn and Ashley here today with a really wonderful, interesting, creative, different kind of guest than we have had on the Empowered by Hope podcast, and this was one of those social media stumbles that went in the best direction possible and I ended up going down this Alice in Wonderland rabbit hole of medical, educational toys to help our children work through the highly emotional, scary, overwhelming experience that happens Anything from a shot to a trach. I mean all this stuff. It's just unbelievable what you've been able to create, and not to mention, when you go to the website which we'll be sharing, the stuff is so cute because it's for like dolls and stuffed animals and it's just amazing.
Speaker 1:So with that, I'm just going to go ahead and introduce our guest, which is Mary from the Butterfly Pig, and I think we all just need to take a moment to acknowledge this has to be the best business name I've ever heard. Period, because when you share the story, I think you should just dive right into that. Will you please tell us a little bit about yourself, mary, and include how this incredible name came to be?
Speaker 3:Yes, yeah, thank you for having me on here. I I am a nurse by training, but I've always been creative at heart, so the butterfly pig is actually a children's book that I wrote before the business even came to be. I have always really believed in, like, embracing your uniqueness, and I've always also liked the idea of pigs flying, because I'm the type of person where you tell me I can't do something, that's exactly what I'm going to do. So when you say like you're in good company, yeah, you say like, when pigs fly, like, I am like you know what Pigs can fly, so, like, I've always loved flying pigs, but I'm like, why, why don't they have any pigs with butterfly wings? I was like we need a story about this. So I wrote a children's book about um, a pig born with butterfly wings, and it's a story about self-love and inclusion because, um, he looks a little different than his friends and um, it really is just about embracing differences.
Speaker 3:So then fast forward a few years. When I started working on this business, I thought it was a really good marrying of the two, because kids with medical needs really don't see that their conditions are like a part of them in a good way, like a lot of the times they just like I feel like in the hospital. It's just something happening to them. It's not something that they're involved in and that they can embrace and kind of share with their peers and their family about a part of them. So we wanted to make it really something that helps them be like the self-love aspect, just like really embrace what they're going through. So that's how we named it the butterfly pig.
Speaker 3:And now for people that aren't aware of what we actually do, this is something the messaging around it I've actually been toying with recently, because if you asked me two weeks ago I would say we make medical toys.
Speaker 3:Because if you asked me two weeks ago I would say we make medical toys. But now we're trying to shift that messaging to help hospitals understand really the benefits of it as we make these medical simulation tools for pediatric education, because they are still toys. But when a hospital hears toy, they think, oh, like it's like a stuffed animal or doll, like we could get them anywhere. They think, oh, like it's like a stuffed animal or a doll, like we could get them anywhere. And if they hear that it's more like a medical simulation tool, then they start thinking about the benefits of it, about how it really helps reduce anxiety and it helps with education and increasing cooperation. So that is all of the stuff we make is we have gosh I would say 80 different devices now might be a little bit more than that and we make everything to look like realistic equipment. And it's made all right here in California by me and my family, because we just I think we have five family members and then one other community mom that helps assemble everything.
Speaker 3:Oh my goodness, that's incredible, that is incredible.
Speaker 4:I think what I think your new like not rebrand, but your new like idea, your pitch like it being a simulation tool, is huge because that's exactly what it is Right. Um, I, um, I have. I was looking around on your website and, um, I typed in the word stoma cause my daughter had, my four-year-old has a stoma now and we've had a lot of you know, trauma around that and cathing the stoma and it freaked her out so much at first and you had one and I was like I didn't expect.
Speaker 4:I was just typing it in and I was like, oh, she's probably not gonna have this, but I'm just gonna look and you did, and I thought that was so awesome because that isn't something that's super common, but it was still there. So I think you guys are really like hitting on so much for these kids. Yeah, it's incredible.
Speaker 3:I feel like I'm in a very lucky, unique space where I also have my dad, who's a retired engineer, and he's also a creative. So the stoma was a really fun one, because we wanted to do it for a long time but we couldn't figure out that the press we used to like make that exact stoma shape.
Speaker 3:If you want to get one of those machines custom made, it's like fifty thousand dollars, but my dad thought you know what I could probably like take an existing one and rig it up to make it, and so now we've made our own machine really to make the ostomy bags. It's like little. Each product is like a different creative project, so it's been really fun for us. That's awesome.
Speaker 1:Awesome. Now, mary, help help us clarify, because I had to look a little bit to make sure that I understood. So, these, these items, you sell, these various medical you know I'm I'm going to almost use the word tools, for right now, like educational tools is almost how I, you know. Look at them. You can still call it toys, it's fine.
Speaker 3:Yeah.
Speaker 1:You know all the things that works, but like from what I understood, like as a parent I could buy these for my child or I could tell a child life specialist about it or hospitals could buy it right. Like it's not like something that is created and exclusively for medical professionals, because I have seen other sites like that and been overwhelmed by the pricing and like the complexity of them and sometimes been like you know, it looks like it's just sewn like a little piece of plastic sewn onto a bear there, which is great, don't get me wrong. The idea but that's I really appreciated that about your site is it actually made me feel, as a way I feel that it's another opportunity to empower myself as a parent for my child, maybe getting that type of support or maybe child life isn't as available in my health care system, because I realize it's it's not everywhere that this is something that a parent you know could do to help each child and increase that comfort. And, um, one of the things I wanted to get your opinion on with your experience is, you know, I've I've heard of these type of, you know, gifts being given to children a lot of times, like when they already have one right, like the cochlear implant. I absolutely love those and there's like three people who I'm like. I've got to send those to them for their birthdays.
Speaker 1:But we have interviewed a child life specialist from Ohio, kim Bridges. Bridge to Bravery is her child life company and she works with children out of home. But one of the things I feel like that she has taught us that I hadn't thought about is the importance of interacting with those tools, that equipment, those devices before your child ever sees them in the hospital, if possible. So I'd love to hear your take on that in your nursing experience. And then with a butterfly pig.
Speaker 3:Yeah, I. So that's a really good thing that I. I was actually thinking about when we when I was coming on to this podcast about like empowering kids and like helping them be their best advocates. The ideal scenario is that, before a kid ever gets like an IV placed or a port placed, they would have this toy to learn about and really help prepare them to prevent that initial trauma from ever occurring as a parent, because if you're being thrown into this medical scenario where if your kid's getting a port because they just got diagnosed with cancer, the last thing on your mind is going to be looking up resources, like you're not going to have the capacity to do that Right. So it for that initial touch point.
Speaker 3:What we're working on now is trying to get these in hospitals so the child life specialists can be the one to do it.
Speaker 3:A lot of child life specialists right now just have these toys to use for education, but then they take it back to use with other kids.
Speaker 3:But really we're trying to equip these hospitals so they can give it out to the families, so they can actually take it home, because that preventing that initial trauma I think is huge, especially for like a port access, like if they have one bad experience, then every port access after that it's going to be quite tough.
Speaker 3:So, um, that being said, if a parent is listening to this and they're like, oh no, like yes, there's still right we, with these toys toys, even if they have initial trauma we're finding that kind of reframing it and allowing the kid to learn about it in a different way through a comfortable and safe environment like play.
Speaker 3:It is helping them reduce that existing anxiety. It's increasing their cooperation. It's increasing their cooperation and the more they are able to just see it on their stuffed animal day to day and kind of just go about the day like they usually do, but they have a friend going with them, it helps them, like, reframe it and process it too. So that's why we really want these kids to be able to take these toys home, because then they can continue to use it in therapeutic play and continue to process with it. So the ultimate goal is to get the hospitals to start giving them out so parents don't have to be the ones to buy it. But right now, yes, and like how the majority of our customers still are the parents that are finding us and purchasing these toys for their kids.
Speaker 2:Right.
Speaker 4:Well, I can speak from firsthand experience that it would have been awesome to have a doll with a stoma upfront for Maren before we got her surgery. But, um, she did not have that and had a lot of trauma around it. And, um, her child she sees a child life specialist, um, every other week right now and she, brittany, actually made her a doll with a stoma so that Maren could cap the doll with like a little feeding tube, you know tube or whatever. And I I have to say that it was game-changing for us, like Marin, you know. I mean we were having to hold her down a lot in the beginning and all of that because you have to cap it so that you keep it open and healthy, and all the things. And Marin, through this play and through having her baby have a stoma, it really did reframe everything for her and it's so much better In fact, like by the end she's like going to school wanting to show friends her stoma you know like it really it was.
Speaker 4:Yeah, it was insane how game changing it was and it was just a doll with like a little like balloon. You know that she like kind of put into the belly. And so I love what you guys are doing, because I've seen it, I've seen it work, I've seen it change, yeah, and I feel like experience for her.
Speaker 3:Unless you've seen it happen like that, a lot of people don't realize like the transformative effect that like play and toys that represent the kids, like helps them and really empowers them. And he's basically my nephew. He has the hypoplastic left heart syndrome and so he's getting a lot of echoes and they were always like scary something being done to him. He had to stay really still for it and we made the echo initially for him because we wanted him to feel like empowered going into it. And the next echo he had he brought in his toy Echo and was teaching the Echo tech how to do it.
Speaker 3:So it really people think it's too simple to be that big of a difference maker. But like, if you look in the terms of kids, they learn through play, they experience their whole world through play. So when you have these realistic toys that look like what they're going through, it just changes everything. It's their whole world through play. So when you have these realistic toys that look like what they're going through, it just changes everything. It's no longer this scary procedure, it's just, oh, it's just my life right now, right, exactly.
Speaker 1:I want to take a second to point out just you know so at Parent Empowerment Network, of course, like we are, all share the desire to empower our children, help them feel as safe and cared for as possible, knowing that a lot of situations we can't prevent the pain we can't. You know, some of this stuff we have to. I hate I can find myself sometimes using the word subject them to because there's no other choice. But one of the things that I just keep thinking as I'm hearing you talk about this and the deal with your own trauma from going through your child's medical, you know, journey, because the more we get traumatized alongside our child, you know, I think sometimes it's just straight up trauma, but you know, having to be the one to hold your child down or, you know, any situation you've been in that's just ripped your heart out, which sometimes there's a lot of those, and sometimes they are just one hit after another. Ashley, you know, and Mary actually you both said it it's never too late to go back and start addressing that. Right, it's not like if you had a bunch of traumatic experiences that that's all she wrote. No, you can start to change the story and the butterfly pig is a beautiful way to start looking into that, I feel like.
Speaker 1:But I think it's important for us to realize that not only do our kids benefit from playing, but so do we, and there's so many things that we can learn from our incredible children. And if you're somebody who maybe does think it sounds too simple, I challenge you to ask a child to teach you something. Yeah, yeah, just in play. It is amazing to me, even with my son. He taught me earlier this week how to do subtraction in a whole new way, that literally he started like making these boxes and then these lines and these circles, and I'm like what have they done to math? Why is this so complicated? And I was like, can you teach me what you're doing? Because, honestly, I can't tell you if you're right.
Speaker 3:I have no idea.
Speaker 1:And he taught it to me and I was like, oh, oh, my gosh, it just made math completely visual for me and well, obviously, for the kids is the point of it. But it was really simple and I realized, wow, simple is the best way to do this and it's. It was really a cool experience having him teach me something, and so I just I think it's important and I know I'm harping on this, but considering our experience as the parent, as the advocate, is important for our children. When we only think about what they're experiencing, we can get so wound up that we forget our children are experiencing us stressed out.
Speaker 1:There's a lot and I think that impact sometimes is even harder on our children is seeing mom or dad. Just you know.
Speaker 3:There's research on that that shows that, like often, if the parents are anxious or stressed, then pediatric patients are too, than pediatric patients are too. And it's there's even more research that actually specifically shows that if parents are involved in preparing and educating their kids, the kids have better outcomes because they're less stressed and then the parents also feel less stress. So it is, of course, not surprising, but I on the nursing side I feel like a lot of the times parents, of course, divert to the medical professionals to teach their kids, because it's new for them too. They don't know how to educate their kids. But with these toys and these types of tools, then the parents if there's instructions and videos, you're directly one-on-one involved, you don't feel so helpless and your kid absorbs it better because it's coming from a parent instead of this unknown scary person in a suit of blue or you know right, so it really it's.
Speaker 3:yeah. Something like this really empowers the parents to be more involved and it's better for everybody really.
Speaker 1:Right. Have you utilized any of these? Like are you? Did you go back to nursing? Do you still do nursing or you do this?
Speaker 3:So I um in 2020 is when I opened the business. It was more like a hobby. I wasn't working at the time, I was actually an adult oncology at the time and so I didn't use them in practice and then I left my nursing job in mid-2023 to focus on this full time. So, that being said, when I worked in peds I would put like the real hospital IVs and stuff and stuffed animals, but you're so limited with that and like you can't give the kids a real syringe to play with because that hooks up to their lines.
Speaker 3:So, I don't want to do that. So I didn't get to use these toys and I so wish I could. But, that being said, my daughter, who's five she's a familiar with every single toy we made. And then my 10 month old. When she was born, she lost oxygen during labor and had to be pulled for the first three days. So she was in the NICU with a CPAP and EEG, all this equipment, and of course, for us it was really traumatic and I remember everybody we were bringing in to visit her after those first few days. They were just scared, like they're like oh, this isn't what we're used to. But we bring in my daughter, who's seen all the toys and she's just excited to see all the different devices. Yeah, and it's really chills, like how, if they see this in toy form and then in the real life it's not so scary, it's like it takes away that novelty, right experience, right where anything that's new or unexpected tends to, you know, elicit a strong reaction from anybody.
Speaker 1:I'm a huge fan of Mel Robbins and so often I hear her talk about the body.
Speaker 1:I'm not going to try to use the science terms because that I will mess up, but essentially, the message that she says so often is that nervousness and excitement create the same physical experience in your body. Your body will have the same physical reaction to either, but it's how you interpret it that determines. Is your body thinking this is a positive thing or is this a negative thing? And that story you just shared about your five-year-old, how she interacted with her daughter, your sister and you know, with the NICU equipment like how I can't imagine better proof, and I would assume that for you as a mom, and what an incredible moment to just say, yes, this work I have been doing, work, yeah.
Speaker 3:Wow, I know it. I feel I think back to that time a lot, obviously because it was really traumatic being in the NICU, but I realized that through our lens, with kind of being tainted with knowledge as an adult, seeing what was going on with this baby and all the what-ifs of her future. You don't know what's going to happen when they have a traumatic incident like this, because it's basically a brain injury and I I was just not being able to revel in the moment and just love her because I was so fearful of the what if. But then my daughter going into it, not knowing any of that. It's just like, oh my gosh, she's perfect, she's beautiful, she's talking to her and I'm just like like we could really learn from our kids because that, like it's, there's nothing wrong with her, just because of the what ifs of what her life is going to be like. So, yeah, Wow.
Speaker 4:That was like so well put, yeah, so normal. We, ashlyn and I, both went through the what ifs. I still go through the what ifs. I'm sure you know we all do as parents. But even after a traumatic event like that, but just your daughter brought you back to the moment of like appreciating what you just brought into this world and that's such a cool way that she helped you see past all of the equipment you know like I just. I am so grateful for what you guys are doing and all the I don't know.
Speaker 4:I think it could be like a huge medical movement. Honestly like not to sound dorky.
Speaker 1:I have a list of items or I have a list of contacts. I know who I want to. I'm going to be sending a message to yeah after this um if that's something I want to connect you with it's like we realize, even though child life specialists are integrating these around the world. As best they can.
Speaker 3:Yeah, they have them in their like toolkits. But this really could be something that like is stocked in every ER or like any floor where these kids are getting these traumatic things happening is as simple as it may be like an IV placement. If they just had a kit they could hand the parents so the parents can start prepping and educating the kids while the nurse is getting the supplies ready. Like it can really change pediatric healthcare. I really could. I need a vision and we just need to get the right people.
Speaker 4:Well, I love that, you know. You know, like an iv, you can kind of do on like the kit or whatever. Like the iv kit, but like I love that your products are, like you could get them and put use with their favorite baby or their favorite animal. It's like it's. It's not like this special baby. You have to have a different baby or a different whatever for everything. It's like it. You know from what the ones that I saw on your website it looks like you can basically like, customize any of these items to like your particular favorite.
Speaker 3:You know, because we all have our favorites growing up, you know, and that's where I I think it's really important for the kids, because when they're in the hospital and they're holding their favorite stuffy and someone comes in with a new stuffy what the pork you're going to get then it's not as empowering. But it's not. Their very own stuffy is changing, just like they are. Then it's like much I don't know, just you internalize it?
Speaker 1:yeah, well, honestly, like it's more personal, yeah, yeah, you know, I was looking at your website and I I think I saw there was like a five5 sew kit and I'm assuming each item comes with instructions of how to install it and utilize it.
Speaker 3:Yeah, so every thing that can be sewn on comes with little sewing instructions and, in terms of how to use each thing, we're working on, um, everything to have its own instructions. Right now, we have like a port kit that has the instructions and there's a qr code that takes you to a page that has like videos so we're starting to do a lot.
Speaker 1:That's really all we want. We really just want the videos.
Speaker 3:No more instructions, please video on how to sew the stuff on. And then there's we're starting to do more kid forward videos of just like showing playing with the toys so they can.
Speaker 1:Kids love to do right. Forget youtube watching somebody else play games and build blocks that your own kid has. Let's watch other kids like.
Speaker 3:What a brilliant way to I know, and this go into their mind and it empowers the parents to be involved too, because if they do get this little toy port, when you first see it, if you don't know like what a port is and like how it's at, you're like what am I supposed to do with this? So the video like talks about that.
Speaker 1:So you're like, oh okay, now I can help yeah, when Emory was in hospital actually both times, uh, both big surgeries anyway, I remember you know uh, here they're called child life specialists. When we were in England they were called play specialists, which I definitely kind of came around to thinking it's a pretty smart name, because she instantly was like play.
Speaker 3:You know, she wasn't even two yet but play.
Speaker 1:Okay, I'm more open to you coming into my room, but I remember that they would bring, like they would have like these, you know, baskets of toys, like little stuffies and things like that, and they would give one, you know, to my son as well as the sibling. So they're like, oh, you guys can have the same one, or you can have ones that play together. And I'm just thinking, you know, as you're sharing, like as the parent, I would be more than happy to be given a little so kit by the hospital and one of these, you know, and the device that works for my child, because so often we're sitting there in the hospital in those situations thinking what do I do? You know, what can I do? Like I'm running out of ways to entertain my kid and you know we're repeating the same traumas. And what a great thing to just keep in stock, because I don't expect every nurse to be like to have the time or child life, like you said, like they have the ones that they can use to show.
Speaker 1:But what a great way to give the parents and the child a tool that can stay with them, yeah, instead of spending the money on a stuffy that, like you said the kids aren't going to have the same personal attachment, like there might be a little Ooh ah for a few moments. But how many times have we all bought the toy that our child absolutely must have and the world will not spend any longer if they don't get it? And then three days, if you're lucky, later my kids play with the boxes longer than they tend to play with the toy they absolutely have. I know and I.
Speaker 3:You brought up a good point too that I don't think that we really talk about enough in the business either.
Speaker 3:Is that for kids that are just like waiting in the hospital with a family member there too he's?
Speaker 3:I have memories of being a kid going to visit my dad in the hospital when he had a kidney stone. I remember he had an EKG on, but now I know it was an EKG but I saw all these different leads like these things and I thought that they were all like IVs in a way, like all these cords coming off of him. It was terrifying. So you're like, oh my gosh, there's so many cords, like what's going's going on? And like if you have a kid that's going to visit their parent in the hospital and they have like an eeg or other things and you show them on a toy first, like, hey, this is what your dad's gonna have when you walk in there, like they're just gonna be excited about it, like it can completely shift their mindset going into something like that or if you have a parent who's at, you know who is going through their own, you know medical, you know journey struggles and if they have equipment at home, how often are you know?
Speaker 1:it's understandable that children, sometimes even older kids, you know I, you know they can create some distance between them and their, their parent, because it's intimidating, it's scary. I mean, I was what? 32, I think when my dad had his massive stroke, and it is one of the one of the top three most dramatic moments of my life was when I walked into the neural. It was the neurology ICU floor in Denver and I didn't know what I was going to see. I had, and my dad was on a ventilator and covered in all this stuff and even though they had told me that he was on it, you know they're like, yeah, he's, you know he's receiving breathing support.
Speaker 1:I wish so much that even I as an adult hadn't just thought to look up what am I going to see? Because it was was I may as well have been a four-year-old, I didn't feel any more equipped to handle what I was seeing. Yeah, and I was terrified. Can I touch him? Can I? Is this safe? Like uh, don't anybody get too close to a machine. I was so scared of my dad and that made me more scared of everything. Then that came into the room, or everybody who came in and started touching things and moving things, I mean like the suction thing. Like like I remember thinking are you actually killing him instead?
Speaker 1:because there's no way that's okay, and just not having any exposure to it before I was 32 and a mess, so to think that our children would just be able to just go with the flow of things. And yet you gave us that beautiful story about your five-year-old daughter just absolutely running with it. And the NICU is, no, you know, not a circus of uh of the kind that we would sell tickets to. I mean, there is nothing like that space. I'm curious, mary, did you?
Speaker 3:you said you were there for three days no, um, so she was cold for three days, but we were there for 16 days, 16 days.
Speaker 1:Okay, so you were there long enough, did it? Uh, did you hear phantom beeping after you left the NICU? Do you have any recollection of that?
Speaker 4:I shockingly didn't, but I mean working as a nurse, you probably don't hear the beeping at all now. Yeah, I know.
Speaker 1:It took me two years.
Speaker 1:It took me two years to, and I'm sure it was because of the multiple surgeries, but I swear like for the longest time I would just be like, yeah, like doper coming out of the multiple surgeries, but I swear, like for the longest time I would just be like, yeah, like doper coming out of the hole, like every now and then, like I swear, I'm hearing the beeping and I, to this day, though, two sounds I can't stand, or I always turn it off and my husband turns it back on I'm not sure why, because he's not here during the day, but like the laundry uh noise when it's like the machine, like a little beep song it does when it's done. I don't know if he thinks he's reminding me to fold them, because I'm not interested. Yeah, but the microwave, oh my gosh, I, there's I. If our microwave blew up and we never replaced it, I'd be more than happy to just like I don't know, just put a shelf there with some pictures on it.
Speaker 3:You know when? Um, one of the most common comments we get on our videos with the toy pumps are a lot of nurses being like does it beep though? Or I hate those pumps and I'm working on um, oh my gosh, it's coming up soon. Our april fool's joke is going to be that our toy, now the infusion pump, now beeps you.
Speaker 1:You know, okay, so let's, let's follow that. So you know, okay, so you make the infusion pump. It does not beep. So as a parent, what I would, you know, Mary, help me with this. But what I'm thinking is you could get that and if you are practicing, let's say you know, let's say you have a child who is getting chemo, or maybe they have kidney disease and they're going in on a regular basis for things and they're going to have a pump, and you could literally set this up, get the device set it up at home and then just turn on a YouTube video. I guarantee you can find a video playing the sounds. Yeah, Just set it over to the side so they're not looking, because then we will totally fall into the phone trap, you know.
Speaker 3:Yeah.
Speaker 1:But you can still simulate it.
Speaker 3:It's still a great way you know and there's ways, but what a great foundational, you know strategy to have in place to encourage kids and parents Making the tools to where we're consciously trying to think of, like how to make it fun and interactive, but also to a point where, like, we don't want to teach them to start messing with their own equipment. Like cause I knew we have kids in the hospital that learned where that silence button was on the pump or the spirit.
Speaker 4:I definitely learned where that button was.
Speaker 3:Most of the time it's okay, but like if there is a bubble or something that we need to get out. So we've been trying to be strategic and like, hey, we want this to be fun and interactive, but we also don't want the kids like opening their pumps and reprogramming it, so we make it in likeness of death, to still be fun and look the same, but not be the same mechanisms where they're like oh, I got this and just do their own.
Speaker 4:That's so smart. Yeah, I wouldn't have thought of that, but you're right.
Speaker 1:That would be so dangerous if they, you know, let me just let me just fix this yes and uh, but with that, I know there has to be somebody who's listening to this who in the? Back of their mind is saying, yeah, my kid would do that no matter what, and I have one of those kids, so so don't make that like, don't let that scare you off. It still is, you know we actually noticed.
Speaker 3:A lot of parents have said that when they're the kids are like, getting set up for their feeding pump is one of the most common ones. They want to mess with all the buttons and stuff. But now that they have a toy that they have, they don't even care about their own. They're playing with the toy and they're stuffy. So that urge to touch that every kid they learn by doing can now be redirected to the toy.
Speaker 4:So that's so smart, so like mom and dad can do the real pump and then they're busy setting up their babies.
Speaker 3:Anyway, yeah, and we've had feedback that, like kids that initially couldn't sit still through a feed actually are now Like and it's wild because, like I know, this stuff works. But when I hear these things I'm like, oh, I mean, that's pretty cool.
Speaker 4:I bet that feedback is, though, um rewarding and, um I don't know. It has to be really cool to hear those kinds of things Like that's why you're doing it, but like to hear it in real life.
Speaker 3:Yeah, and I'm, I'm getting better at like receiving it. I think before I I was like, well, I mean, the parents are the ones that are actually like playing with them and using it. Like, yeah, we're, we're just the tool, but it's the parents that are. But I'm, I'm starting to like be more open to receiving that feedback and like internalizing that it's something that we're making a difference on. Yeah, but I have mental blocks that I don't know if it's from nursing or something I just like.
Speaker 4:I don't know their, their results, I'm not the one doing it. No, well, I was just show why you're doing it too, you know, and that shows like who, like who you are, because you're not trying to, you know, I don't know. I think it just goes a lot to show, prove your wife right, like you're doing it for these kids and so that their lives can be better, and not to get a bunch of glory for yourself or whatever, even though I think you're a genius.
Speaker 3:It feels like sometimes sharing testimonials. I never everybody sends the nicest messages and email and Instagram and I never share them because I feel like it's like, oh, look what I'm doing.
Speaker 1:Mary, we're going to interrupt this podcast moment and, ashlyn, I'm going to switch to my marketing and PR background. I'm going to tell you that, no offense, no matter what you say about your product, it will not matter to us parents as much as what another parent says about their product.
Speaker 1:They're not sending like, unless they send it to you and say don't, you, do not share this with anybody. You don't have to say their name, you don't have to even say where they're from. Please share those, because you're not only like you're, you're doing a disservice to yourself and also we. We trust parents a lot of times more than we trust anybody else.
Speaker 3:I know and I, I my. I work with the marketing team for the last few months and they always ask where's your user generated content? And I'm like in messages, and so now I'm going through and I'm like asking oh, is it okay if I share this? And everybody says yes, so I started to make like a catalog of stuff I can use in those posts.
Speaker 1:That's so awesome Ask them to send videos, ask them to submit videos of how they're like, how they use it, or their child, so then you have less of those to make too. People love those moments because that's one of my favorite things about being in this medical, family, parent world. You know this club that nobody asked for, but once you're in, it's really cool, yeah, in. It's really cool, yeah, that we it's so full of people who genuinely love the chance to use their experience to help another with the experience. That is one of the biggest ways that we find healing and and growth in this experience.
Speaker 1:You know, through this, you know life that we didn't want to sign our children up for. We didn't want to sign up for as parents right, but that is a gift that is immeasurable and it's, you know, and its value and impact on us, and it's also is such a beautiful lesson to show our kids, which I think a lot of times they just naturally show us back Like I'm so excited and thrilled, ashley, that you shared that Maren got to the point I didn't realize this that she's like can I show my friends at school my stoma?
Speaker 4:She thinks her stoma is so cool. Now, yeah, it is, it's huge and it, you know it's been game changing for her and it's it's fun to see that, that switch in her brain. You know like this is cool. And please tell us too, like, um, I'm sure we'll post links and stuff, but can we purchase your butterfly pig book online or something?
Speaker 3:Yeah, that is. It's on our website only right now, Cause we got hard covers made at a factory and I don't know why. I thought it would be easier for me to ship them out myself, but yeah, we have hardcovers of the book on the website and in the future we'll be doing the soft cover through Amazon.
Speaker 4:So that's awesome. That's awesome. I just think that you know, like you said anything like that, like Maren thinks her stoma makes her different, but it's cool and my older child likes to, you know, tell people like what, my sister has a stoma. You know, like it's just kind of a cool thing in our house now um, that marin uses catheters and has a stoma, and so, like any, anything that we can do as parents to like reinforce that different is cool. I'm all about it.
Speaker 3:So, and that's where I think, like in the society as a whole, like I, I feel like we're like starting to get better about that, about like seeing differences. Just it's like something to embrace. And I've noticed a lot with my five-year-old lately we through cause, now that she's older, she's watching like more older kid shows and there's a lot of themes around bullying and I've noticed that, like the conversations we're having about it, it always goes down to the same thing when she's like why does somebody mean like that? It's like, well, it's because they people are scared of what's different than them.
Speaker 3:But if we change the lens and we seek to learn about people that are different than us and see the differences as a good thing, then like that's how we prevent this from happening and, and it's really powerful, watching like your kid kind of internalize that and, like you know, instead of like staring in the public, if they see somebody that has like a walker or something they're, they ask about it and so like if we could just encourage conversations and educating and really empowering them instead of being like you know, I thinkh don't talk. You know, I think, just like I don't know, we can really change, like the next generation to be cheesy. You know Right A lot of it.
Speaker 1:I totally agree with you. I'm all about the Ted Lasso way. Like I'm so excited that season four is officially going to come I know, my favorite show of all time but one of the things that, like, we literally have semi-joked but are actually probably seriously, you know, embracing it. I said we need to add a new value to Parent Empowerment Network that you know we stand on, which is always stay curious, not judgmental. You know, stay curious, not judgmental, because I feel like that's how we learn and that's how we grow and embrace differences and you know it just totally shifts the way that we interact with our environment and the people we come into contact with. I mean, even you know our own relationships. You know I wonder why that person is talking that way, or I wonder why that person looks this way, or you know and, and so then it's not like, oh, that person's, you know like, instead of it being like all I see is different, it's I wonder like why? And it just totally changes it. So one thing I I don't like. Okay, I'm excited about your website. I feel like we need to like do a tour of it. I mean, we're going to share all the links. It is so cute, seriously, everybody.
Speaker 1:But you said something at the beginning of the podcast that I'd love to. I think is a perfect way to kind of end this conversation. So this started with you know, you wrote this book, right, that was the first thing that you did before the medical equipment. And you said something that stood out to me, which was that a lot of kids who are, you know, in the medical realm tend to see and experience it as something happening to them, coming at them, and not see it as a part of them. Right, that you know that they can embrace and makes them, you know, special and cool and unique.
Speaker 1:I'll be honest, like I have had the mindset I think it's kind of been an undercurrent that when I found out Emery was going to be born with bladder atrophy and started, you know, doing the whole what's life going to look like for her, what's it going to be like, which you know you talked about even with your daughter like that fear at first which we say over and over, that that fear, it's just how, it's just all your love spilling over and not having enough room to hold it. That's what fear tends to do. It's just love running away, yeah, from you out, and. But I'm curious. That that is.
Speaker 1:You know, I was always worried about her. I didn't want her to be like bladder. Atrophy defines me, right, my difference defines me. But I would really like you to speak to us about what you're trying to teach more through the story and how maybe we could start to think about that a little differently, because I'm actually thinking, you know, like I've wanted Emery to just feel like any other kid, right, but but she's not. I know I kind of feel like I'm really. You know we're gonna use I'm curious and.
Speaker 1:I I would love to hear you speak on this.
Speaker 3:Yeah, and I, um, I wish the book was even more like, specific to like medical needs and stuff, but it's not Call you too. But I, yeah, I'm glad that you asked that because, like, I agree that like you, so you don't want to have it define you either, like if you have a disability or medical condition, a lot of people don't want to be like, identify with it like that. But because of your like, unique diagnosis or your experiences, you are different in such great ways. Like you, these kids that go through this are so resilient and strong because of like what they've gone through and like often, because they're subjected to like all this new stuff coming at them, they're just like more wired for like change and being flexible with things. So, like I, I think that a lot of kids going through this do they compare themselves to their peers who don't have to go through these experiences, and they're.
Speaker 3:We want them to be able to feel sad about like that, like that, of course, like it's um, you're looking at them and you wish you could do things differently, but then we also want them to see just like how strong they are becoming like and it's even as adults, like when we are put in these really hard scenarios like my daughter's birth. It was terrible and I wouldn't put that on anybody, but I grew so much from it, both like my husband and I's relationship is like stronger from it. Like there's stuff that we learn in this life through these experiences and I feel like kids with medical needs. They they're really immersed in maturing in a way you know, like they, just like they get such a wild life experience so young that it just helps them grow to be just like I don't want to say better, but like they, they like really I don't know. I feel like earlier than their peers, they understand like the complexities of life and like they can appreciate it more.
Speaker 1:Yeah, I love that we, we preach the phrase power of perspective, because that is, honestly, I think, a lesson a lot of people do not master until they've gone through the really hard things. And our children, I mean just, and I would like even as a family like Ashley and I did an episode a couple weeks ago about, you know, raising the siblings of our other, you know, our other children Actually, I saw a term the other day. I think we should call them super siblings.
Speaker 4:Like we've been, like we need something positive to not be like the other kids are like yeah, exactly yeah, the healthy ones.
Speaker 1:No super siblings.
Speaker 3:And I think people who have siblings too, with medical needs, are just like in my experience they're just like such wholesome, wonderful people too, like they get it and they just yeah and realizing you know what is a big deal, what is not.
Speaker 1:And you know when you were talking about, you know, kids, you know seeing what their peers can do, like I don't know why, but immediately my thought was like, oh, you can kick a ball, great, no-transcript. You know, keep to herself and not want to share with others.
Speaker 3:Like, each experience like kind of gives you a different type of superpower. So when you're older and you're like looking for what to do with your life too, you can reflect on all your experiences and give back to the communities and through knowledge sharing, like there's, like there's millions of different things that you can do with that type of perspective.
Speaker 4:Right, absolutely.
Speaker 1:I can't wait to. I really want to get my hands on this book. I do too.
Speaker 3:I feel like we're talking it up too much. It's not this.
Speaker 4:No, we love books in our house. And like I said, anything that, like celebrates, different is a great book in my, in our library.
Speaker 4:So, yeah, absolutely. And I I just have to say like I applaud what you're doing, I'm so grateful that, like your company exists and I think that it can be game changing for patients. I think it can be game changing for siblings watching their, you know, sibling go through these different procedures or these different things every day. Like I think the play aspect there even is so huge and, like Ashlyn said, even for parents, just that, you know, just changing that narrative a little bit with the play, I think is going to be really awesome for for a lot of people. So I'm excited to share your story and your and your website with you know, our friends and our network.
Speaker 3:Yeah, thank you, this is wonderful. I yeah, it's great talking to you too.
Speaker 1:Oh, thank you. Well, mary, just to make sure that we're helping you, since boasting about yourself is obviously not something that you are wired to do, even though you deserve so much praise. I understand, so one, I definitely. I know that. I definitely want to feature the butterfly pig, your business, as a featured resource on our website. We're going to add that to our key resources page for parents, because I think it's that amazing, that special and that and that important for people to find out as early as possible in their journeys. Second, can you just let us know anybody who is listening to this, who is hearing this, and even if you don't have a child who has medical complexities, but maybe you're a supporter and you want to help bring access to these tools from the butterfly pig to your local healthcare system. How can people go like, how can they help you get your product into either the hands or at least in front of the people who would make those decisions?
Speaker 3:I know right. Yeah, that's something I'm still figuring out, but if they go to thebutterflypigcom you can see everything. We do have a Wishful Wings program where families of kids with medical needs or like departments, child life specialists that can't afford the tools go in and make wish registries. So if there is somebody listening that we call want to play it forward, they can actually go in there make wish registries. So if there is somebody listening that we call want to play it forward, they can actually go in there and grant wishes for these families and the products will be sent directly to their house.
Speaker 3:So I did just have a medical mom reach out saying somebody bought her daughter an NG tube and she was like crying because she's so excited that her daughter gets this resource. So that makes me want to cry. So if people are listening to this and they do support the mission, but they themselves don't need the toys, they can absolutely go in and grant wishes for the people that do. Oh my gosh, that's incredible. Oh my gosh. I didn't see that when I looked the first time, that's awesome.
Speaker 3:It's a new feature. So it's our wishful wings program which is now on the homepage and in the menus. You can also go to thebutterflypigcom slash wishfulwings.
Speaker 4:Wishful Wings yeah, we can link that too, just so it's easy to find for everybody. That's really cool.
Speaker 1:A hundred percent, oh my goodness. All right. Well, Mary, I would love to keep talking to you more and more, but I think for the sake of the podcast today. I can't imagine probably a better spot to end this conversation. And just you know, thank you so much for your time today, for what you're doing.
Speaker 2: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 alone, Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. And, last but not least, if you know of someone who could benefit from this podcast, please share. We hope it's better.
