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
Empowered Parenting in Hard Moments with Child Life Specialist Brittany Luther
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Child Life Specialist, Brittany Luther, brings over twenty years of expertise to answer these questions in this emotionally powerful conversation. She explains how children naturally communicate their fears and process trauma through play—whether that's with specialized medical toys from organizations like The Butterfly Pig or simply through creative exploration with everyday items.
Brittany introduces two transformative concepts parents can immediately implement: "wonder" and "pause." By creating unhurried space to wonder with your child about their experiences and feelings, you open pathways for them to express themselves in their own time and way. This practice helps children work through medical trauma at their developmental level, restoring their sense of control and agency.
The discussion explores age-appropriate preparation strategies for medical procedures—from paper chain countdowns for preschoolers to detailed preparation plans for teenagers. Through the story of young Maren's journey with her stoma care, we see how consistent, honest communication paired with simple distraction techniques gradually transformed a painful daily procedure into a moment of empowerment and connection.
Perhaps most touching is the validation for parents who've had to perform painful procedures on their children. The guilt is real, but as Brittany and host Ashley demonstrate, these moments can ultimately strengthen the parent-child bond when approached with honesty, compassion, and support. Seeking help from child life specialists isn't a sign of failure—it's a powerful way to expand your child's circle of support and reclaim the joy of simply being their parent.
*After the episode recording, Brittany’s time was spent with a warm cup of tea and “Lemon Swirls” both in the comfort of her beautiful office and in the McGill Rose Garden for her quiet reflection and work to rest her voice!
Brittany Luther is a Certified Child Life Specialist with nearly 20 years of experience supporting children and families through medical challenges. With advanced training from Duke, Vanderbilt, and the Children’s Hospital of Philadelphia, she has worked in high-acuity settings including emergency care, oncology, and neurology. Now based in Charlotte, she combines part-time hospital work with her private practice, where she helps children, teens, and families navigate seasons of transition, diagnosis, and grief with compassion and hope.
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Ashlyn and I would like to take a moment here on our podcast to extend a very heartfelt thank you to Electrolok Incorporated. This fabulous company has extended support to Parent Empowerment Network now for two years in a row. They were among our largest supporters and sponsors at last year's gala and this year, in 2025, they were our largest supporter and sponsor again, and their support has truly made it possible for us to continue to do this great work for the parents that we serve they still see the value in what we are doing, which is people helping people when they need it the most, and they showed up big for us so that we can continue to show up big for you.
Speaker 3: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 4:Hi everybody. Welcome to the Empowered by Hope podcast. With your co-host, ashlyn and Ashley, we are joined by a very special guest today, as we are every week Ms Brittany Luther. She has been a child life specialist for over 20 years and has been a huge influence in our journey with Marin that many of you are familiar with now. She has her own practice and works in a hospital locally and just really really loves what she does. You can tell because of the way she interacts with these kids. She works with other ages too, but of course Maren's young. We are so excited to have her here today and talk about how, even post-trauma, you can still really get your kids help to kind of navigate that trauma and the healing and just really be able to move forward and get on a better path.
Speaker 4:And it's never too late like we talked about in our podcast with the butterfly pig. So welcome Brittany. We're so happy to have you here today.
Speaker 5:Thank you for having me.
Speaker 2:Oh, we're so glad to have you here. If you are listening to this and not able to watch this, let me just tell you I am joined by two Carolina beauty Queens. They're blonde bombshells and I'm so excited because, already listening to both of you, I'm like man. We're really missing out in the Midwest with these accents You're all. Dialect is so much better. Oh my gosh.
Speaker 4:Oh well, brittany, we interviewed Mary from the butterfly pig and had the pleasure to speak with her and about what kind of you know play toys they have and things like that, and I did not even realize that you were an ambassador. I emailed you right after I met Mary and I was like you have to check out this website and you already knew about it.
Speaker 5:Yes. So the butterfly pig is an amazing resource and one that I have absolutely loved from the moment that I learned about it. So I learned about the butterfly pig actually on social media and I was immediately drawn to it, because the butterfly pig takes real life medical equipment real life medical equipment and they create these amazing toys that can interact with children and can be placed upon any sort of doll, stuffed animal and allow the child to really play and interact with whatever they want to interact with. So the butterfly pig toys in the hospital setting and here in my office setting have been used on everything from a doll to a Barbie, to a matchbox car, to a hair bear. It is really unbelievable and it was amazing because really, at the onset of the butterfly pig, they reached out to a group of child life specialists and they had a pilot project called playful prescriptions, and that project brought Butterfly Pig into the hospital system and what they did was they provided us with different toys that we could use in the hospital system and those toys were then given to the family that they were utilized with in preparation for whatever procedure they were undergoing. And what happened was the family was. They were incorporated in a survey pre and post procedure, and then the healthcare provider whether or not that was nurse, child life specialist physician was also given a survey pre and post.
Speaker 5:And what was amazing is that all of that research really showed us exactly what we know to be true, in that when children are given the opportunity to play, alongside that psychological preparation before a procedure, that child is coping better with the procedure, they are able to understand the procedure, they have less pain and that child's overall experience is better, which also increases the entire family experience. And so overall there's better patient and family-centered care, which is going to increase your patient and family experience in the hospital setting and over time. If that patient and family is admitted to the hospital time, if that patient and family is admitted to the hospital, primarily in the emergency room, then that family's experience has started on a good foot from the very beginning. So we're looking at how do we get this into offices, how do we get this into more children's hospitals, which is just amazing.
Speaker 4:I just love it so much.
Speaker 4:You know, one thing that I think is really cool is you know, all of that is really awesome, especially if it can be done like upfront or before the child has a procedure or some kind of traumatic event.
Speaker 4:But that's not always the case, as we know with Ms Marin. She got her stoma surgery before we were patients or before we were seeing you in your private practice on a regular basis for that, because she had a very hard time coping with a stoma, since it kind of reminded her of another traumatic tube that she had, and so what I love about this is you were able to use those, not even pre-surgery and pre-procedure. But we worked really hard with Maren post-trauma and it's been game changing for her. She is a whole new kid in regards to her stoma now, and I just think that it's really cool that we're getting all of this information out there, whether you use butterfly pig or just the preparation that someone like you can provide, and you know that healing for like you can provide, and you know that healing for the parents and the kids you know. So obviously we know because of Marin that it's never too late. But can you kind of comment on that a little bit.
Speaker 5:Yeah, absolutely. And so you know, when we think aboutfly Pig and having some of those medical toys, that is certainly a wonderful piece. But then there's also, you know, having a simple, fisher-price medical kit available, those medical supplies that are available, whether or not they are toys or whether or not they are real supplies for a child to be able to manipulate those. You know, in Maren's case, she loves having those ultrasound pictures of her bladder. Those are pictures that you know in your family, ash, you know that those are pictures that live on your refrigerator, because Maren talks about the pictures of her bladder on the refrigerator.
Speaker 5:So allowing Maren the control of being able to bring those pictures into the office setting and be able to show Miss Brittany here's a picture of my bladder and then being able to have the butterfly pig pretend small ultrasound, to be able to then take pictures of her baby doll Cecilia's bladder and be able to process through that in the office setting is beautifully healing for Marin because that places Marin in control.
Speaker 5:And so Marin is able to process through all of the procedures she has experienced, but now she's in the role of being the healthcare provider, so she now has a badge that she can wear as the nurse, the doctor, the child life specialist. She also pretends to be the mommy right, so she's in all the roles in the office setting, which is beautiful for her, so she can process through all of those different roles in this setting and so Maren is able to really accomplish all of the experiences that she has had in a developmental way. It is so appropriate. So she's able to go back through those memories and she is able to process through when it was really hard, when it was middle hard, when it was a little bit hard, and then, as it's gotten a little bit easier, and so Erin is able to step through those and that's the importance of that consistency I want to have to tell you she actually made her a badge.
Speaker 4:She has a doctor badge, oh my goodness. You made one for her, and mary does wear it.
Speaker 2:She loves it okay, I need to see a picture of this, because emory needs one for sure.
Speaker 4:Absolutely, oh my gosh, I love that she's been saying lately she's going to see a picture of this because Emery needs one for sure, absolutely.
Speaker 2:Oh my gosh, I love that. She's been saying lately she's going to be a baby doctor. Oh, I love it. We'll see, which is a huge, huge strides for us.
Speaker 2:So I want to pull on something a little bit here that you talked about, because that was really wonderful information how you talked about. That was really wonderful information how you talked about. I appreciated you talking about how Maren was able to process the different intensity experiences she had with her feelings. Right, that she wasn't only processing it when it was super scary, but even when I would say maybe the word is intimidating, still, right, yes. And when I think of the butterfly pig toys, like when I saw it, I was like, oh my gosh, it's like taking something from scary size to fun size, like, yes, that's, that's how I see it.
Speaker 2:But beyond these great tools that we absolutely love from the butterfly pig, I want to lean a little bit more into the work that you're doing and help us on, like, can you help explain to our families maybe who have experienced trauma but haven't had the opportunity to work with the child life Maybe nobody's even mentioned that to them, because that's always a surprise to me, but that's a much more common experience than any one of us would like to hear, and what I want to explain, or have you explain, is what does process trauma actually mean? What does that mean in terms of your child who has gone through that? Because I think as a parent, sometimes that's kind of hard to even understand what is actually going to happen. Why does my child need this?
Speaker 5:Yeah, that's a great question and a great point. This, yeah, that's a great question and a great point. So one of the pieces that we really look at as a child is maybe leaving the hospital setting is you know, where is that coping? And so when a child is leaving the hospital and you're going back into the home setting, right, you're going back into the home setting, right, and we're looking at how is that child going through day-to-day life, right, and you're going to the pediatrician or you're going to specialist visits and what is that process like for the child. And that is that piece of you know, the delineation between traumatic response and coping. And then when do I need a little bit of extra support? And is that from a child life specialist? Is that from a play therapist? Is that from a psychologist? Is that from a combination? Right? And then where do I find those resources? Or do I have a conversation with a Brittany Luther? Do I have that conversation with someone in my community or in my environment? And also, what else can I do at home, right? And so, ashlyn, answering your question about you know, what is it that I can do as a parent? Because you, as parents, listening in to this podcast. There are beautiful and wonderful things that you can do, and that's what we really want to do is empower you to hold space for your child. Want to do is empower you to hold space for your child, because not every family needs to have weekly interactions with a child life specialist, a play therapist, a psychologist. Not everyone needs to go from this podcast and say, oh my gosh, I have to find a child life specialist to work with my child weekly, right? But here's what you can do is allow the opportunities for play and for expression, for emotional expression. Find the opportunities for the play and for your child to be a child. And so you know.
Speaker 5:What we know is that children express themselves through play, through wonder, through exploration. Children express themselves through the opportunity to be outside and explore, to be outside and explore. They are not expressing themselves when they are on a screen too much. They are not expressing themselves when they are in too many structured activities. Children are expressing themselves when they are given opportunities with a blank piece of paper and they are given loose parts, they are given paint, they are given their hands and they are given clay and they are given an empty heart and they are given simply the instructions of let's create something today together. I wonder what it could be. When I look at these colors, I see colors that I might see in a garden. I wonder what you see.
Speaker 5:So, even as a mom, a dad, a grandparent, an aunt, an uncle, a caregiver, a foster parent, an adoptive parent, you can wonder with a child is to wonder with a child.
Speaker 5:To pick up a bottle of bubbles, to walk outside with a child and to blow the bubbles and then give the child the bubble wand, and to wonder with them.
Speaker 5:And to wonder what happens when you blow a lot of bubbles and then what happens when you blow them fast and then what happens when you blow them slowly and then what happens when they fall slowly on the ground and take 30 minutes and wonder with them and then sit quietly and see what happens, because that's when children process, that's when we take the space and that's when the child will take the moment to say you know, I was feeling really, really scared because I was wondering when I was gonna go back to that doctor, because I was feeling really scared because I was thinking I might have to go have that sleepy medicine again, and then I was thinking that I was feeling really scared every night when it's time to go to sleep at night. So that's why I'm coming to your bed every night, and then it becomes the roller coaster, right? And so then, if they start to share that and the roller coaster keeps going, then that's when the red flags can come up, or maybe the red flags don't come up.
Speaker 2:Wow, yeah, that was very powerful, Wasn't it? Yeah, Now I just feel like I want to go plaster the word wonder all over my house Like right, Remember to like. What a word I mean. How often, Ashley, how often do you even use? Do you use that word? I know I never.
Speaker 2:I never use that word yeah, and now I'm like writing it down in all caps right now because you know, you say wonder, brittany, and I think that that I think the reason that hit so hard is because when we are parent advocates, to wonder sounds like to think about things that we can't control. Right, and we are speaking personally. I should say Sometimes my brain is programmed that I'm trying to in using that as a skill to help them cope. That's right. I think that's a really. That's a feels like a really beautiful realization in this moment personally. That's a feels like a really beautiful realization in this moment personally. And then I want to say this one last thing. And then, um ashley, I know you had some other really good questions. If you are listening to this.
Speaker 2:We are obviously talking about how can we help our children who have experienced traumatic events. You know procedures, whatnot. Sometimes it it's as simple as getting a shot was super traumatic for them, and it's easy for us to tell ourselves, oh my gosh, it was just a quick pinch, we got it over with, we held them down and that was that, and we think we got through it and we want to go home and not think about it again until the next time it comes up on the schedule of the next shot that our child needs or the next procedure that it's required. But just getting through things and pushing them out of the front of our mind doesn't mean that we, as the parent or as our child, are able to let go of them. And I'm curious, brittany what benefits have you seen in parents' abilities to cope and support their child when they've gone through this work with you?
Speaker 5:Yeah, that's an excellent, excellent question. What's interesting is that parents in this space, I feel like, are really now at a point where they are utilizing the time either in the space and in the room with me, with their child, to pause, or they're in the waiting room with the door open between where we're working, or they will say, or their child will say, I'm just going to close the door a little bit, or they're going to close it all the way, or they're going to close it all the way and they're taking it as a pause that's my other word is pause and taking it as a breath and as a true moment. And this space that I have been really intentional in creating in my office space with a dear, dear colleague and friend. Her name is Heather Ford. She is an amazing artist and psychologist and she creates beautiful art that really brings about pause and relaxation in a way that is truly very therapeutic, with really peaceful beach scenes and hearts that bring together a lot of what I want families to feel. I want families to feel and the space and the feeling is what I want families to feel, and I believe they feel that in this space and then leave this space and think about how can I create that in my child's room at home, in my own home or in their hospital room when they are going for an admission?
Speaker 5:I can think about a boy who was in my space two weeks ago, who he's 10 years old and then was being admitted inpatient, and we thought about he felt very calm in this space and built almost like a little cave during his session with the nugget couch.
Speaker 5:That is a couch that you can build any different way and he loved making it into kind of like a cave or fort, if you will, and he thought about how can I do that in my hospital room?
Speaker 5:And he loves to play soccer and so he wanted to be able to move his feet, even though he would be, you know, limited on mobility a little bit. So he thought about how in your hospital room, can we make that kind of like a fort and kind of like where you can move your feet right, kind of like a fork and kind of like where you can move your feet right, and so, with using exercise bands at the bottom of his hospital bed, tied to either side, to move his feet, and then with blankets and pillows up around the top of the bed. He can create that in a hospital setting and so, using what we can do in the office space in terms of coping and relaxation and wondering to home and to a clinic setting or to a hospitalization whether or not that's for a week or for a longer hospitalization, for surgery, for something longer we can apply that and we can bring that together to really create an environment where that is holistic for a family, which is how it should be.
Speaker 2:I thank you for saying that. I want everybody who's listening to this to just take a moment and literally absorb what you were just saying, Brittany, because the takeaway for me from that is that it is okay. Me from that is that it is okay and it is your right and your child's right to expect and create a personalized experience throughout your medical care. So often we have been, you know, I think it's just the experience of where we were for years and what healthcare meant before. This holistic, you know idea started really coming to play and it's going to take a while for that to fully be realized, but I think for so long we have all tried to force.
Speaker 2:There's this belief that we have to force fit ourselves or our children into the medical care environment, no matter how uncomfortable it is, because there's this idea that we are there to get literal health care. That is it, and to expect more than that isn't something a lot of us have taken into consideration, but I I'm a big fan of saying that to me, the only thing that should be standardized about healthcare is that it should be personalized, and I really believe that, and I feel like you just gave us some incredible ways to think about that. That are not a big ask. And I will tell you this I will guarantee that there are nurses and there are doctors and there are techs and aides, et cetera, who will see a personalized room and they will love it and probably want to spend more time in your kid's room because it's more comfortable for them too. Right, it's more enjoyable, it's more human, and that's such a fantastic, really really great advice. It's a wonderful tool to implement for our kids, for ourselves.
Speaker 4:I think especially like the hospital room.
Speaker 4:You know we've spent a lot, a lot, a lot of nights there and anything that you can do to their room to make it homeier it helps obviously the child, the patient, but it really does help like us parents too or whoever's spending the night in the hospital with them, because those rooms are horrible and they're not comfortable and you know it just like when you do those little touches.
Speaker 4:I remember when Maren was in the PICU after her first big surgery, one of the nurses had me like email her some pictures of Nora our oldest and you know Maren as a baby with Brian before we left and she like hung them around the room and made like really awesome posters with Marin's name on it and Marin was like three months old at the time, like she. You know it didn't really mean anything to her at the time but it was so game changing for me and it's like those little touches where you're, you know, making the room what the child needs, like the fort, you know, or this being able to move his feet and play soccer, or you know a poster for mom with like pictures of home, like those little things are so game changing when you're in that kind of environment. Yeah, it's just really special and something that might not feel hugely important at the time.
Speaker 4:you know like the doctor's probably not thinking like your bed doesn't need to be a fort you're only going to be here for a little bit, but we know, and, brittany, you know, that totally changes that child's outcome and their perspective and the level of trauma that they take home from that procedure by doing something simple like that.
Speaker 2:you know, that's exactly right children don't stop being children just because they're in a different setting, and you know that's something that is a consistent part of being an advocate is you get is helping them hold on to their childhood, even when they're going through things that are unthinkable, unimaginable, they still deserve to be a child. You know, baby, whatever it is, and you, as a parent, you have that right. That's how you show your love, right, that's, you know, helping them protect that innocence. Or, you know, wanting more for their experience. You know, wanting more for their experience. I'm curious, brittany, one of the things that I learned from another child life specialist. Her name is Kim Flood.
Speaker 1:You two remind me a lot of each other. Bridge to.
Speaker 2:Bravery. She's wonderful. She really helped open my eyes to I know I'd kind of been sticking my head in the sand up to that point about honesty with my children when it came to impending procedures or appointments. There was a little bit of this oh, if I tell them about it, they're going to dread it and it's going to build up all this anxiety and then it's just going to make everything worse. That's the story I was telling myself and she, you know, really helped debunk that idea.
Speaker 2:So what I'd love to hear from you is what advice would you give to a parent or somebody who's in that caregiver position who maybe that they've had that same mindset and they're not wrong for it. You're all just doing the best we can. But you've employed that for a long time and things are. You know, things are okay between appointments or procedures, but when it's time to go and your child realizes their reactions are getting bigger, they're getting worse, it's getting harder. How could, how would you talk a parent through how they have the power to improve that experience and start utilizing truth with their child?
Speaker 5:Absolutely so, helping to create a coping plan around getting ready for those visits and so really looking at the developmental age of that child and thinking about the amount of time ahead of time. And so you know, for a child, I'll think about Marin and thinking about what the procedure is and the amount of time ahead of time. So you know, for Marin, for example, let's say, it's an ultrasound. So an ultrasound is a procedure that is pretty common to Maren. It is a procedure that is not necessarily painful but it is a procedure and it is one that she does need to be prepared for. Well, that is one that you know, at Maren's age, being four years old, that is one that she can know about ahead of time. And so you know, preparing her a day or two ahead of time is absolutely appropriate to prepare her. You know an upcoming surgery that is one that we would not want to prepare a child Maren's age. We would not want to prepare her a week ahead of that. That would be one that we would prepare her probably no more than about two or three days ahead of time. Four, four and a half years old. Her anticipatory anxiety would start to take over in terms of asking Ashley so many questions that it would start to hinder her coping skills. So Maren has a lot of really excellent coping skills and if we were able to prepare her three days ahead of time she can understand and in a very concrete way we could create. Everyone has made those like little construction paper loops. We could make three of those construction paper loops and say, merit, in three days we are going to go to the hospital and we're going to talk about the hospital in those days. And so on the first day we are going to talk about going to the hospital and we're going to make a sleepover bag. And on the second day we are going to add in all of our outfits. And on the day before we're going to go to Miss Brittany's office and we're going to talk about exactly what we're going to do at the hospital. And so Maren would understand what's going to happen on each one of those circle pieces of construction paper. So developmentally that's very appropriate for a four-and-a-half-year-old right. So that steps us through exactly what's going to happen. So then on that last loop she comes to a child life specialist, whether or not that's in a private practice office or that is going to a hospital for a pre-op surgical clinic visit, where they are doing labs, they're doing a pre-op clinic, they're doing typing screen, you are doing vital signs, all the things before you go in for surgery the next day, right? So you are doing that the day before, and then the next day you're going in for surgery the next day, right? So you are doing that the day before, and then the next day you're going in for surgery. So there you go, right.
Speaker 5:So that is like a perfect setup, and so what I explained to families is, when we can do that age appropriate for the child, then that is going to increase trust, that is going to decrease anxiety for the whole family unit.
Speaker 5:That's going to decrease anxiety for the child, the parents, the siblings and the whole family unit, because the whole plan is now understood.
Speaker 5:Now, if you have a teenager who's going to have a spinal fusion surgery, who is an athlete and that is going to impact their entire spring sports season, we are going to prepare them more than three days out of time and we should have a more intricate preparation plan. Well, we would talk through that and the surgeon's going to talk through that. We also, though, we owe that 17-year-old a really excellent plan around their pain management and we owe that teenager a really excellent time for them to process through what is their coping plan, how are they going to manage their pain, what is their physical therapy plan going to be? And we need to give that teenager some really excellent control in that, because if we strip all that away, then we're going to have a teenager who's going to be mad, who's not going to be compliant, who's going to want to take more pain medicine than they need, who's not going to go to physical therapy. So we've got to wrap all those supports around that teenager. It makes so much sense we have started.
Speaker 4:We do a lot of that with Maren. Not necessarily the paper rings, although I do love that and I want to to start doing that, um, but you know we get to. We start talking a couple of days out what babies are you going?
Speaker 4:to take with you and where are we going and who are we going to see while we're there, and all of those things. And it really has helped so much Not that she's not still scared once we get there, of course, cause they're going to be, but it really has helped just with her general demeanor on the way there and she's. So we start thinking about the fun things we get to do too and, like you know, we get to see some of our favorite nurses if it's a long time stay or you know some friends up in that area or whatever. But but we have started to talk about it in advance because it does help her a a lot.
Speaker 5:So, and, mary, and we'll say to you ashley, and she'll say to me um, you know, I can just hear her little voice saying I'm gonna go to the hospital. And she'll say, very, you know very firmly of what she's gonna do. And then she'll say I'm still going to be a little bit scared. I'll be a little scared, and you'll say, and I'll say, oh, of course, and it's always okay to be a little bit scared, and I'll even say it's even okay to be a lot a bit scared. And she'll kind of turn her head and she'll say it is. And I'll say, oh, of course. And then I'll even say, you know, I'll wonder with her and I'll say I wonder if there's anything that you have questions about, you know, with going to the hospital. Or I wonder if there's any of these things here in Miss Brittany's office you want to look at, or any of Miss Brittany's books that you want to look at the pictures about, and maybe looking at those things or playing with some of these different things, it might make you feel a little less scared, or it might not, but we could certainly try.
Speaker 5:And she'll always say, oh, yeah, let's try. And then I'll even say, you know, maybe we could even learn a new way that we could take some slow, deep breaths, or we could even see if we could find a new squish ball, or we could meet a new friend, and you know, we'll, we'll learn like about a new squish ball or about a new distraction technique, and I'll teach her, even at the young age of four, and she's always like oh yes, ms Brittany, you should teach me that, and those are coping skills at the age of four, right? But to always reassure that of course it's okay to be scared, that's okay. And to even say mommy feels a little scared, that's okay. Or she'll say I feel a little worried about that, and I'll say that's okay.
Speaker 4:Or she'll say I feel a little worried about that, and I'll say that's okay too, you can feel a little worried about that at all ages right yeah, one thing that, um, she always wants to know if something's gonna hurt, and that's one thing that I like try to be very speaking of, truthful and all that actually, like that's one thing I try to be very truthful with, about with her and I'll say, um, this isn't gonna hurt if mommy, mommy always tells you the truth, like before anything. I tell her this and or I might say, this might hurt a little bit, but only for a minute, you know, or whatever it is. But I've been trying to be like very upfront with her about that, because she will ask that every time, even if it's like something that doesn't even touch her, or like her ultrasound, she was scared, it was going to hurt. And I was like, no, they just put that silly jelly on your belly and then they take pictures, you know.
Speaker 4:And she's like, oh yeah, that doesn't hurt me. And I was like that's right, but you know, especially like with shots, that does hurt. So I'm like, yes, this will hurt, but only for a second. And I've learned that, like, if you do tell her the truth, it does help her. I guess, like in our brains, if you tell someone, like an adult, that something's going to hurt, I feel like it's almost scarier, but for them they just want to know that like we're there and we're honest, and then now she really does believe me when I say something's not going to hurt, and it takes that to your heart a little bit, you could have brought up just distractions.
Speaker 4:And Brittany, one thing I wanted to talk to you about today was, you know, as you know, marin had this big surgery last summer that she had a lot of trauma around Um, we got a stoma so that she could cath through the belly button stoma and, um sorry, I'm used to talking about it with other kids Um, but she, you know, was very scared and that, and it hurt her, even though it technically should not hurt, it did cause pain for her for some out you know, outlying reasons. But one thing that you really worked with us on and this is all post trauma again was how can we, you know, sometimes you can't prevent the pain. So these daily cares that we had to do for her, and capping through her stoma and irrigating her bladder, that all did bother her and we had to do for her, and capping through her stoma and irrigating her bladder, that all did bother her and we had to do it. So I mean, you know, me and Brian were kind of having to hold her down for two months about I think and so sometimes we can't prevent this pain or this trauma, like we're adding to it almost because we know that that is for the best right. So we're post-surgery, we're doing the care. She's miserable.
Speaker 4:One of the things that you gave her was you know, we talked a lot in your office about what I was going to be doing and how that made her feel. And then you gave her a magic wand that she could twirl with glitter and try to focus on that, and you gave her. You know there were some other distraction-y type things that you did. So can you kind of talk to that a little bit? And like, sometimes we as caregivers we can't prevent the pain or not do something if it hurts because it's required, right? So like, can you kind of talk to that a little bit about some of your tips that we use with Maren from that standpoint?
Speaker 5:Yeah, absolutely so, one of the pieces of that.
Speaker 5:And, ashley, I feel like I can. I remember that, like it was yesterday, sitting on the floor all together and hearing Maren's voice to tell me about what was happening and to show me so, to show me on her baby doll, on cecilia um, and to tell me exactly what, how mommy would help to take care of her. Even though it hurt, we still knew mommy loved her so much and was taking care of her. Even though it hurt, we still knew mommy loved her so much and was taking care of her, even though it hurt. To tell me in her words, so that Maren had that opportunity to express herself.
Speaker 5:And, ashley, you did a remarkable job of, even though it was hard to hear Maren's voice, you just stayed quiet so that Maren's voice could be heard, so she could say mommy cleans my stoma and mommy puts the catheter in my stoma and it hurts, but mommy is helping me and she would kind of look at you and you know I mean I remember at times like you had tears in your eyes and you knew and it broke your heart and you had shared with me, separate from Marin.
Speaker 5:It broke your heart and you had shared with me, separate from Maren. It broke your heart to do it, but you knew you had to because you were caring for your child and you love your child with everything in your heart and soul and you are caring for her. But this is how you had to care for her, even though it was painful for her. And so you, with tears in your eyes, just nodded your head and you just lovingly placed your hand on her back and rubbed her back and you didn't say any words. So she heard the words from me as a third person. She heard the words from me as a third person, right, as a third party, saying that's right, maren, mommy loves you so much and mommy loves you so much that she's caring for you and her job is to take care of you and to keep your body safe and healthy and to help your body grow big and strong. And that's what she's doing, because she is helping to drain your bladder so all of the pee pee can come out, and she's helping to clean everything out, make sure there are no germs. So we were using all of the appropriate words, anatomical words and the words you were using, and we were using Marin's words, and so then we use that and then help to figure out exactly what it was that Marin needed to do and what her jobs were. And so Marin needed to stay still, and then we needed Marin to help to calm her body, and you actually do an amazing job teaching me about Marin's anatomy and about what you needed her to do in terms of relaxing her body and her muscles. So then I had to figure out how can we get her to do that while she is crying in pain, doesn't want you to do this and you have to, right.
Speaker 5:And so I'm brainstorming and figuring this all out kind of at the same time thinking well, we need our hands up and separate. Let's put a magic wand in her hands. Let's distract a little bit, let's try and engage her in some slow, deep breathing as much as we can. We use twinkle, twinkle little star, because there were stars in the magic wand. Let let's get her breathing as she sings, and so all of these different pieces and parts go through that coping plan right, and so using what is engaging for the child, what helps them calm, what are their jobs?
Speaker 5:And then how are we connecting that into the caregiver so that it's a team? Because we need a calm, connected team that can work together. Because I'm not with you all the time. I'm seeing you once a week and I'm not there doing this care with you and in fact we've actually never done this procedure together. We've only ever talked about it with Cecilia the doll that we made a pretend stoma out of a pink balloon, out of a pink balloon belly button, because it was exactly a pink balloon stoma and we used I don't even remember we used, it was a feeding tube thing as the catheter.
Speaker 5:It was a feeding tube. It was a tiny little ng tube as the catheter and I used a q-tip to get the little pink balloon down into the quote belly button of a little baby doll. Yeah, so she did a little homemade stoma. That was so good, we made a homemade stoma.
Speaker 4:But it helps so much.
Speaker 5:Yeah, it's all those pieces, right. And then really, you, Ashley, waiting until she was ready for anyone else to be a part of that care and you were the only one who could do that care for quite some time and then now you fast forward and she's now at a point where she is standing up Right. I'll let you tell that part.
Speaker 4:That's happening now. Yeah, so you know, like Brittany said, we first were like distracting her and she had the wand and would sing, and so her helping was like the breathing and trying not to tighten her muscles up so much so that we could actually do it. And then, you know, gradually, as she's gotten older and it's gotten less painful, it's still scary, or it was still scary. It's not anymore, but you know she started helping so she would wipe the stoma first and I would say, how many times do we have to wipe it again?
Speaker 4:And she'd be like we have to do it three, mom, you always forget, you know silly stuff like that. I'm like we have to do it three, mom, you always forget, you know silly stuff like that. And then you know she kind of started helping some and now you know she's actually letting us, like, catch her standing by the toilet instead of having to lay her down and watch a phone or an iPad or something you know.
Speaker 4:So it's like it's gradually gotten so much better for her and less traumatic for her. But gosh, it was traumatic for all of us in the beginning. I mean so sad. You hate hurting your child even though you know it's for the best. But you know now that I'm a year, not even a year, almost a year post um, that that specific trauma you know. I can say that everything. You know we didn't get to really prep her too much up front for that.
Speaker 4:I guess I should have, but it was so hard to disconnect the original tube from the catheter because she wouldn't have known what I was talking about prior. And so we did do it post trauma and she is thriving right now and she is doing it trying to help and she'll hold the catheter by herself now sometimes and we don't have to watch something every time we try to do it and we don't have to do all the distractions and you know it's. That was the hardest of all the things we've been through. That was probably the hardest few months because it was twice a day every day, fighting and making her cry and her telling me I'm hurting her and all the things.
Speaker 4:But you know, working with you and the things that you taught us to do, which anyone could do at home, I mean those were easy suggestions and it didn't cost money. You know I didn't have to go buy a bunch of stuff. It was you just telling me kind of or guiding me on like how to talk on her level and you know age appropriate words and age appropriate approach for that trauma, because it was very much trauma for her and for me. But, gosh, I'm so grateful that you were there because it I mean we're, I mean you see her now like she is a totally different, in a totally different space than she was a year ago.
Speaker 5:She is yeah, absolutely yeah.
Speaker 2:Ashley, I I know that everybody who's listening to this is just automatically going to be feeling the same way I am right now is to just you know how much I love and adore you and respect you and just admire you. But I just want to take this moment, especially with Brittany here, one, what a powerhouse team you two have been for Marin, but also, I'm guessing, Brittany. You can easily back me up and saying Ashley, you are so incredibly remarkable and I know that you don't give yourself. That's okay. I mean, you've been really vulnerable on this conversation and I really appreciate that because it's hard to do. But you are giving an inside look to what so many of us really experience and the feelings that go along with it. And you, just you are the. There's nobody better suited in this entire world to be her mom. There's nobody who could possibly do anything better than what you have done, and I'm so proud of you possibly do anything better than what you have done and I'm so proud of you. And you know I I'm so grateful for Brittany's influence, not just on Marin, but very much for helping empower you. And I think something that I've realized just listening to this beautiful conversation between you two is that there's another really big benefit to whether you actually work with a child life specialist like Brittany, or even you just started employing some of these practices. We're talking about right Wandering with your child, playing with your child, practicing honesty and preparation. You know those, those steps that you talked about three days before two. I mean that, honestly, I was about to start crying and I was. I couldn't figure out why, honestly, so I just sat back and listened. But now I realize, because when you talked about that and then you talked about the process that you and Ashley took with Marin, I realized that the gift that occurs is taking this approach makes it possible to feel like mom again, to feel like dad again, because when you are a medical parent and your child has to go through things that nobody is signing up for, right, Nobody's like. Let me throw my hat in the ring for that one. That sounds interesting or like a good challenge.
Speaker 2:One of the hardest parts is feeling like your ability to be the parent that you envisioned is stripped away, and the worst experience that I've had has been putting Emery through painful things that I've had to do to her and thinking, oh my gosh, like I don't know, like I don't know how I am surviving this, other than there's no other choice and the guilt that came along with that experience.
Speaker 2:But what you guys just talked us through, what you all did with Maren and with you, Ashley, is you showed how it's possible to repair the hurts and maybe the judgments on ourself as a parent that we carry with us that do affect our children, no matter how much we try to hide it.
Speaker 2:And I just thank you both for sharing that really raw and very personal experience with us, because I hope that anybody listening to this can glean even just a little bit of hope that there are ways to really strengthen your connection with your child and really build something extra beautiful and so much closer than maybe would even be possible without this experience. And we're not saying that you are supposed to enjoy it and love every moment of it, Absolutely not. When things suck, they suck, I'm sorry, they just do. But that doesn't mean that beautiful things, grateful things that you will carry with you and your child will carry with them forever won't occur too. So I'll stop blubbering on it. But it's just that, really, that really, um, I think that's the first time I have heard a clear way, or believe that it is possible to heal from the hurt inflicted on my own soul when I've had to hurt my child to help her.
Speaker 4:So thank you and I'm not a child life specialist, but I will say it did help that we finished every like, every care that I had to do for Maren. That was traumatic and she's screaming. We finished everyone with the longest hug until she was ready to let go and she loved that. She would be like, can I have a hug now? And I'm like, yeah, I want to bring me in.
Speaker 2:I want to, can I? Is there a child life specialist? It's a parent life specialist or like a medical parent? Like I'm thinking I'm the one who needs more work and could use the support. What an incredible gift that you have and you share with the world. Brittany, I actually has been singing your praises and I've seen your impact just through what I've learned you know for for Maren's sake and Ashley's and I appreciate that so much as somebody who loves them to know that they've been getting the help that they deserve. But there is no question that you are doing exactly what you were meant to do here and what a gift you are. Absolutely thank you. Wow. It is.
Speaker 2:I'm like I don't know where to go from that I'm over here, kind of sappy and emotional at this point, but you know I haven't thought about last summer very much.
Speaker 4:So it was. You know it brought up a lot of old feelings for me. Obviously I'm crying again. It's not the first time I've cried. I won't be the last.
Speaker 2:Brittany, how about you wrap us up with? So I know that you were sharing that you are an ambassador for, um, you know the butterfly pig and just the work that you do. If somebody is listening to this and is either inspired by what you shared about butterfly pig and wants to look into how to help get that into their area, is that something that they could learn from you, with you being an ambassador and, yeah, somebody who's an incredible expert in the field of child life?
Speaker 5:absolutely. So you can absolutely reach out. You can go to my website, which I know you guys will share, so you are welcome to go there. I have lots of resources that are posted there and some of my most favorite books that are on there. Maren happens to be one of my favorite friends, who loves to come.
Speaker 5:She calls the books that are behind me Miss Brittany's Library, and she knows that I'm very particular about children's literature, especially in relation to hospitalized children and or books about different parts of the body and about organs and their jobs, and Mary now loves to come in here and find the books that are the best ones that have the best drawings of bladders.
Speaker 5:So you are more than welcome to visit there. So you'll find great resources there, and I hope that you will find some of those to be helpful to you, and I am always happy to be a resource as well. So there is a button on my website that says contact me here if I don't have the answers which I certainly do not have them all I am more than happy to help to connect you with someone who I think may be a good resource. So you know, this world is connected in lots of really beautiful ways, and so I find that the more wonderful connections that are made just like Ashlyn and Ashley and being here today the more people are able to help one another. So if you reach out and I can be of any help to connect you to a child life specialist in your area or at a hospital that is close to you or at a university system that may be doing a study that could be helpful or beneficial, I would be more than happy to do that. So please reach out.
Speaker 2:Oh, thank you so much, brittany. I'm so excited. I have so many ideas that I'm going to have to work through with Ashley after this to talk to you about, but I really firmly hope that this is not, this is definitely not going to be the last time that you are a part of Empowered by Hope and the Parent Empowerment Network. I see a really bright, fun future ahead, and I just want to end on this, this very last note.
Speaker 2:It is essential that anybody listening to this realize that if your child needs help from child life specialist or a therapist or psychiatrist any of these things to deal with whatever stress and trauma you all have endured, you are not a failure as a parent. We cannot do this all alone. We're not meant to. That's why the incredible, beautiful field of child life developed, because they realized we need somebody who can focus on this and help, simply just strengthening their support circle and strengthening your own. So it is a gift. It is by no means a sign or indication that you are failing in any way whatsoever. So I can't wait to hear what you all think of this episode. Ashley, thank you so much for bringing Brittany to us. She is just remarkable, and you two together, oh my gosh. I think you two might, I don't know. I can see a couple of children's books in the future, maybe based on Marin, and I could be a rational spirit.
Speaker 2:Right.
Speaker 4:Yes, absolutely, absolutely recommend a child life specialist. Enough if that's something that you're needing for your child or have access to, because Brittany has been game changing for Maren's progress and we're so, so grateful. So thank you for joining us for today and for sharing some tips that we can all do at home. Some of those things were so simple and so huge at the same time, so impactful, so thank you for sharing that with us, brittany.
Speaker 5:You're so welcome. Thank you for having me.
Speaker 3:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you and, last but not least, if you know of someone who could benefit from this podcast, please share.
Speaker 5:We're Hope it Bears.
