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
The Language of Support with Amy Bradford: How to Support Parent Caregivers in Meaningful Ways that Make a Difference
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The journey of caring for a child with rare disease or complex medical needs often leaves parents and caregivers isolated in their experience. While friends and family genuinely want to help, many struggle with knowing how to truly support without overstepping or saying the wrong thing.
Amy (Board) Bradford brings her decades of experience working with rare disease communities to share powerful, actionable strategies for supporting caregivers effectively. This conversation goes beyond the typical "let me know if you need anything" platitudes to provide specific ways supporters can take meaningful initiative.
The episode reveals three foundational approaches that can transform how we show up for caregivers: first, taking time to learn the specialized medical language of a condition rather than expecting caregivers to constantly educate; second, remembering to ask about the caregiver's emotional experience rather than focusing exclusively on the child's medical journey; and third, creatively adapting environments and activities to be more inclusive without burdening families with all the planning.
As Amy shares from her experience running camps for children with bleeding disorders, "We instilled in our staff that this was a week that we would never say no to our children." This philosophy of creative problem-solving and adaptation offers a powerful model for how supporters can reframe their thinking to create more inclusive experiences.
Whether you're a friend, family member, or community supporter looking to make a meaningful difference in a caregiver's life, or if you're a caregiver wanting to help your support circle understand how to better show up for you, this episode provides the language and practical steps to strengthen these crucial connections. Send this episode to someone in your support circle today – no explanation needed.
About Amy (Board) Bradford: Amy is an accomplished patient engagement leader and global storyteller with the proven ability to build unwavering patient community connections in complex environments. She is the Director of Patient Engagement of Believe Limited, an agency dedicated to the Rare Disease, Health and Wellness, and Patient Connection and Community space.
Believe Limited, The Patient People: https://www.believeltd.com/
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Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, Empowered by Hope, is here for you, 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 is your host, ashlyn Thompson. I'm writing solo today in terms of the hosting chair, but as always, I get to bring somebody special to introduce you all to who is here with the purpose of helping make your life as a parent or a caregiver or a supporter of those roles, make your lives a bit easier, a bit more informed and empower you to know how to make your lives better, because we could all use the help. So today I get to bring a really fun guest. I can tell she's got this awesome personality, great energy. I feel like we're going to rock and roll through this conversation. That is so important.
Speaker 1:And today's topic I'm just going to read it because you wrote it really well is how can the caregivers of the caretakers so that's a lot of you listeners. So we use the term support circle right A lot on Empowered by Hope. So how can the support circle feel empowered to help and care for their loved ones who either have a rare disease or have some type of medical challenge their loved ones who either have a rare disease or have some type of medical challenge, or if you're the one raising that child, how do we support those parents and those grandparents, whoever's involved in those lives. So I am so happy to introduce who I think is going to become a very quick friend. Miss Amy Bradford and I got thrown off by your tag that showed up on our video. It says I know.
Speaker 3:I just got married, so it's 50, 50. It's 50, 50. If I have the married name or not, yes, oh okay, I love it.
Speaker 1:So that's why congratulations, amy, mrs Board, and congratulations to who's the lucky winner of your lifetime love.
Speaker 3:Well, his last name is Bradford, so you crush it. His name is Rob Bradford and he's incredible and I'm trying to figure out. We all know this horrible vibe of like trying to figure out what you should do professionally Like, are you bored of your Bradford yet? Anyway, 50-50.
Speaker 1:Okay broadford, yet anyway, 50, 50. Okay, I'm amy bradford. You are here today to talk to us about this is. This is an episode, let's just cut to it.
Speaker 1:This is an episode that, if you're a parent or caregiver, you can listen to it, because it's going to inform you ways that you can literally educate in a kind, positive way, your loved ones, your friends, your supporters on how to actually be truly helpful in your life. If you don't have time to listen to it because you're not getting any of that help, then just go ahead and hit the share button and just send this baby off to everybody who's in your support system, who is texting you, calling you whatever, messaging you saying how can I help. Just send this to them and you go on and take a moment for yourself. So, amy, I am so happy to have you on here and I think the best logical next step is for you to introduce people yourself.
Speaker 1:Now that we know that you're recently married, maybe share a quick little like I want to have a couple wedding details. I'm such a I'm a total wedding girl, like I love other people. I had mine so small on purpose Cause I found out I got really overwhelmed when the intention was on me, so I had like 30 people, yes, and it was wonderful. But so, yeah, tell us about that and then give us some background info on how you got really, really equipped with these skills and let's dive into this conversation, you bet.
Speaker 3:Hello to your listeners. I love I have a heart. I mean I'll get into it, I guess, but I have a massive heart for parents and caregivers with kids with chronically illnesses, with really complex medical conditions, you guys, I don't know, just through my whole thing. So this has been such a treat to get to, um, I don't know, share and and have a conversation with you, Ashlyn. The wedding was great and, um, I am not a wedding person and so, uh, it was really hard for me to get into the wedding thing and it, it, I, it just it was really hard leading up to it because all the attention, you know, I felt really uncomfortable and then, very luckily, the weekend was just glorious. There was just like no anxiety. I got really lucky. So, anyway, that was great. Congratulations, Thank you. But I guess the only main piece of expertise that, like I don't know, enables me to talk about this is that I do not have children with a rare disease.
Speaker 1:And we are glad for that perspective Seriously, because so many of our supporters do not have that and that's why we need to have these conversations. We can't only talk to people who share that with us, because that's how we end up self-isolating 100%.
Speaker 3:I have been in and I won't get too deep into it, but I've been in the rare disease community now for over two decades.
Speaker 3:Um, in a various array of things.
Speaker 3:Um ran a summer camp for a long time with children who have bleeding disorders, hemophilia, von willebrand's disease, and then ran a non-profit for a long time and now I work in a production company that specializes in rare disease and our whole thing and I run our patient engagement division, host and write and produce several of our podcasts. But my whole purpose in my job, my whole purpose in my last job as I was running camps and I was running a nonprofit organization, was to create spaces that were adaptable, were really trying to allow our families the space to really feel seen and heard and relaxed and to take that pressure off. And so in thinking kind of how I could I don't know communicate a little bit to families about how you know that support circle that you said can really step up and be empowered to help families without feeling like you need to wait for the parent or the primary caretaker to you know, kind of show you the ropes, show you the barriers, there's some ways that you can really take that weight off of those primary caretakers.
Speaker 1:That's wonderful. I think it's really important to acknowledge just a human truth that culturally we're really really uncomfortable with discomfort. We're very uncomfortable with others' pain, their struggles. And while that comes from a good place, we have to be honest with ourselves and realize that sometimes that can kind of get us to self-soothe by telling ourselves if they wanted my help they would tell me or I don't want to get in their way, or they're so busy, or I don't want to say the wrong thing, or I don't want to do the wrong thing, so we just step aside, or surely they have other people in their lives who understand better, they know more. I talked to so many families who lose friends, who lose some real key supporters in their lives because they can't relate. Both sides of that equation counter into that. But it's really easy to dismiss our our place in somebody's lives when we're hurting for them.
Speaker 1:Yes, and I'm going to challenge you as if you know, because I'm in the support circle for tons of people now. I'm not just somebody who receives the support right Like. I do this all the time as part of Parent empowerment network and just as a friend, and I talked to a lot of friends who have situations that are way more complex and truthfully devastating than mine. I had a conversation with a mom friend yesterday whose daughter is terminally ill. I will just challenge you that, as Amy starts to help guide us through this conversation, really listen and listen with your heart and not to sound cheesy, but challenge yourself to lean into the discomfort and think about applying this conversation to yourself, because I guarantee that people are going to start to kind of bubble up into your mind as you're hearing this, and it might not even be people who have children with medical struggles.
Speaker 1:It could be that friend who's going through a divorce. It could be somebody who you know maybe their spouse lost their job and you know they are struggling and it's so uncomfortable and you don't want to make them. You know you don't want to take the wrong step right, but this conversation today is really powerful and really helpful for all of us. So we're going to, we're going to tune in, we're going to listen with our hearts. Push away those, those voices that are telling us somebody else can do it or or don't mess up. And we're just going to, we're just going to listen and we're all just going to come from a place of love and learn and grow together today. Yep, yep, yep. All right. So why don't you kick us off, amy? Because so Amy is much more prepared and structured in life, I feel like, than I am, and she put together this super beautiful outline.
Speaker 3:And if you ask me to put together an outline, I was like that's the most baller podcast moves it. I was like that's the most baller podcast move.
Speaker 1:You're like, okay, queen, it's so funny. So your version of an outline is a proper outline. Ashlyn outline is like three bullet points and so when you put this together, I was like this is incredible. I probably like I accidentally gave you a homework assignment, but it was so helpful so I say we just rock it.
Speaker 3:No, I think it's great and I should trademark this Also. I say we just rock it. No, I think it's great and I should trademark this Also. I haven't trademarked this. This is just 100%, just a thing that I put together and I will say, to echo what Ashlyn said so eloquently, that discomfort is real and it comes from a good place because you don't want to overstep, but there's also fear. It's like you don't, we all don't know it's so uncomfortable. No-transcript.
Speaker 3:I think really the first thing to really think about is there is a way for you, as a support team, to absorb any information about your friend, your child, whoever is in your life that is dealing with this that is wrestling with. There's a way to absorb the information so you feel like you have a great vocabulary going into any conversation. When someone, when a child, even an adult, when you are diagnosed with a rare disease, quickly, quickly, quickly, you start to develop a language that is almost foreign to other people and it's different for everything. There are certain things about what you call certain symptoms. There are certain things about treatment. There are certain things about what an emergency room visit is like and parents of children who have rare diseases, the reason that it's so, and all of you who are listening get this the reason that it's so, and all of you who are listening get this the reason that it's just almost magic when you get into another room, even if your child doesn't have the same rare disease. But but there is a magic to like not having to explain yourself over and over and over because there's just this like shared language and, as a person completely on the outside, there's a way nowadays, because we have the internet, to absorb that language and to just kind of get some literacy around some of these terms.
Speaker 3:I think really listening to how patients and how physicians talk about your particular family member, your friend's rare condition, is so helpful. It will help you hear things when your friend or your loved one talks about it. You will be able to ask more informed questions and nowadays it's easy. Do some Googling, seriously do Googling. Watch any videos you can. Tiktok and Instagram now is robust with this stuff. Keep listening to this podcast. There are other podcasts, I'm sure, that are disease specific. Anything that you can do to really listen, I think is important If your, if your family member or loved one has has a local organization that might have events every now and then. Don't assume that that's just for the primary caretaker, that's for the primary family, who are more than welcome to go to those events, and it will be so a it is a loving thing to go to that event to just be like I want to learn the language.
Speaker 1:It's literally it makes me emotionally, even just thinking about language. Yeah, cause that's such a big deal for families to when you attend something like that it's. My kids love the movie Madagascar and the scene where Marty the zebra when they get to Africa and he sees other zebras and it's like I see you and you see me and we're not weird or one-off, and you see me and we're not weird or one-off, or even if we don't have the exact same thing going on like I, just I see you completely and I accept you immediately. That's such a rare experience to be joined by somebody who doesn't have to be there. Oh, that speaks such volumes about your love and your support and your total acceptance 100%.
Speaker 3:I mean it's just it is, and I think also the realization that it is. It is a foreign language. It is a very specific language that each disease state has in terms of treatment, in terms of you know symptoms like in hemophilia community you know parents talk about, like you know well, their child had a bleed and you know what, what was, what's your bleeding schedule. Like you know symptoms like in hemophilia community you know parents talk about, like you know well, their child had a bleed and you know what, what was, what's your bleeding schedule. Like you know those types of things that it as a support system. If you start talking to your circle specifically in that language, it'll just make them feel more seen and it's it's easy to do. There's today's internet age, it's just easy to do.
Speaker 1:Yeah, I want to just have a first step. I just want to tap one last thought onto that Cause. You just inspired me and it's word. I think this is very important If you are in a support, a supportive role. I am not telling you to not ask a lot of questions about whether you know it's the diagnosis or the treatment. I'm not telling you to not ask them lot of questions about whether you know it's the diagnosis or the treatment. I'm not telling you to not ask them about that.
Speaker 1:But if you have any intel, whether it's a diagnosis name or if there's anything that you can do some just research on your own, just to have a generic understanding, so that mom or dad or grandma or grandpa, aunt, uncle, whoever, or even if it's the, you know the individual themselves with it, don't have to utilize a ton of energy to just educate you on it in explicit detail, because you're so curious and honestly, sometimes it's okay to admit that it is sometimes just fascinating or it's like the train wreck or the car crash that you see that you can't help but look at and you genuinely care and want to know.
Speaker 1:But being protective of their energy is another way to really show the depth of your friendship or your compassion, realizing that it takes a lot of energy to talk and talk and talk about it, and also sometimes just explain, do you exactly right? Like because they're still learning a lot of times, like we're still learning, we're still understanding, and can we like, oh, everybody's favorite go to, but also least favorite to hear, which is everybody's different, right? Yeah, so true, and so don't assume, and that's one of the things I know that you're going to talk about, I think you've even got it. Next, amy, I love that you pointed out have genuine curiosity, yeah, stay open-minded, yeah.
Speaker 1:Talking about it is no, no, no, no.
Speaker 3:I think, and I think this is just us, as, like people and all the things we, we shy away from asking about you know the hard things, or we just say how are you doing? You know something very basic. But to push yourselves out of that comfort zone a little bit, to to think about it differently of this is a caring thing. To actually ask the caretaker how are you? And we don't think about this very much, but every single time a caretaker starts to talk, in particular about their story, it's always about the child, always, always. It's always the child's version, it's always.
Speaker 3:This is what happened at this particular event. This is what happened to this particular surgery. Rarely do we ever get to the meat of. How was your emotional experience through this? How was your emotional, mental, physical wellbeing through this period of life through, through this being through this period of life, through through this? I?
Speaker 3:We did a. We hosted a caregiver workshop for um, a rare disease that I'm going to. It's a. It's a very rare syndrome, it's called LEMS and um. We had all of the. It was the first time that all of the patients went into another room and it was just.
Speaker 3:It was just the primary caretakers and we did a storytelling workshop and I thought it would be relatively simple to just, like, you know, have them tell their story.
Speaker 3:You know, we were just kind of telling them, almost like from an advocacy perspective of like, well, this is how you, like, you know, put together like a really nice crafted story and it was. It turned into this like rich, emotional time, because it was so, it was so powerful that these men and women had never truly been asked what their experience with this was like. And to have the space and the safety to be like this has been really hard, getting emotional, just thinking about it. Like that you don't get the space a lot of times to do that, you don't get the opportunity to do that, you don't get asked that and, and most parents, you're going to have to, you're going to have to weave and get, because they're going to talk about their child, which is great, it's a part of it, but then, but then push a little bit and it's important, like your experience as a mother is important, just as your child's experience is important. It's it's as as friends, as as family members. It's important to just like push through that well, that's.
Speaker 1:Thank you for sharing that, and I can see the genuine emotion on your face right now. I think that must have been a very powerful experience and I'm assuming it was really a special one to carry, you know, to continue to carry with you. You know, even just hearing you say that, I had a conversation yesterday with a mom who she put it so well this realization that we are never just one thing at a time, but we strive to put ourselves in these boxes Like I am a mother, I am a caregiver, I am a podcaster, I am a nonprofit director, I am a wife, I am a sister, like all these things, I am a friend. I mean, we could, every one of us can go on and on and on and on. And what happens?
Speaker 1:A lot, and when somebody you know, when they become this journey, it's like all those other pieces that make up our identity are just kind of out floating in space. Even to ourselves, we lose sense of those. But the reality is, is we're not our whole selves without all of those pieces, and all of those pieces are influencing who. We are right, and I think it is so important to and it's such an easy, wonderful gift to extend to anybody who is a caregiver Such an easy, wonderful gift to extend to anybody who is a caregiver that I see you as your own individual self and I appreciate that this journey, these, you know, these things that you are up against are immense and I can't understand them, but I care about you as a person just as much as I care about your child's wellbeing, yeah, and I think that's like it's hitting that pause and helping, and a lot of times, what you're doing is you're actually reminding that parent or that caregiver oh, I'm more than this, oh, this is why.
Speaker 3:I feel so depleted. Yeah, your stories matter too, and your child?
Speaker 1:needs you to matter. Yes, 100, they can. We can't just tell our kids to do one thing and then live a totally different way yes, and it's not selfish, it's not, it's it's.
Speaker 3:It's not even, it's not even looked down upon to have you know events break down because it's so hard. It's hard and there should be space for that, there should be safety and a place to be held within that space because it's true and it's authentic and it will make you a better parent. And anyway, that genuine curiosity, I think, is pushing to that discomfort Everybody genuine curiosity. I think is push into that discomfort everybody.
Speaker 1:Yes, yes, go there, stay my favorite show. I've been saying it a lot on the podcast. So looking for a sponsorship or a partnership with Ted Lasso, season four, because I always bring up Ted Lasso. Yes, stay curious. Yes, ted Lasso's got this down. If you're not not watching, if you haven't watched it, go watch it and you will learn a million life lessons that will help you be a great friend, a great supporter, a great parent, all those things. And with that, it's not even about being great and perfect, is it Amy? It's about just caring enough to try being okay with knowing you might stick your foot in your mouth and having the humility to apologize when you mess up. 100%, because we're human. Nobody says the right thing all the time.
Speaker 3:And you'll never be an expert on this.
Speaker 1:The parents will be an expert on this. Yeah, I mean, they'll probably be more of an expert I was about to say that they're medical providers.
Speaker 3:That's a whole thing. That's like another vibe. But no one is asking you to be an expert. I think it's the attempt to learn, the attempt to be curious without that parent needing to ask. You know, I need this support from you. I need the support from you is a massive gift. And so to just like shift your thinking of like I'm not going to just wait for them to tell me what they need really push into some of that.
Speaker 3:This next one's trickier and it takes a little bit more creativity, but I think it's really, really important. And this next one is starting to reframe your brain about adapting certain situations to make it more accessible for that family and for that child. Adaptation when anybody has a disability or a rare and chronic disease is something that is uncomfortable, shied away from and, as a support system, to start thinking that way, to take some of the weight off of that primary caretaker, would be such a gift. And I think you know one of the things that I think is so important for our children, especially that are facing these complex medical conditions, is you know, they have been put in limitations their entire life. There are certain things they can do, there are certain things that they can't do and to give them opportunities where, as a support team, as adults, as the people in their circle that love this child and love these parents of this child, to give them opportunities where we can say we're not going to say no to you about this. We, we're gonna figure out a way for you to do this.
Speaker 3:A lot of this comes back from my time at summer camp, and my favorite thing about summer camp was that, you know, I instilled this in our staff that this was a week that we would never say no to our children, and at the time, hemophilia in particular was a fairly gnarly condition to deal with. And because we were outside and because it was summer camp and everybody you know I mean they're, you know they're normal eight-year-old, you know, you know insane children. You know we had a lot of. We had a lot of health stuff. We had a lot of joint bleeding. We had a lot of kids that would need to be in wheelchairs because, you know, they had certain complex issues with their bleeding disorder that made it so much harder for them to stop bleeding at the time. And so how would we play flag football on a Thursday evening after dinner and this one kid who had to be in a wheelchair for the rest of the week. How can we not say no to that child that they sit on the sidelines? How can we get a 20-something-year-old counselor that puts the kid on the back, back, that literally plays flag football with the child on the back? Don't say no to the kids, you know, and it takes creativity, it it takes like an extra step, it takes okay, well, maybe we don't play flag football, we're going to do something that's inclusive to everybody.
Speaker 3:But to think like, okay, as grandparents, we're never going to be able to go to Disney World. This child will never be able to go to Disney World and have that experience. They're too complex, they have too many medical conditions. How can we make a trip possible where maybe it's not a normal family vacation, maybe it's not a three-day gun hole insanity, maybe it's like we're doing three hours because this is what this child can do, we're going to do something extremely specific and we're going to make it like magical for that child within three hours.
Speaker 3:I mean, I don't know, like thinking outside of the box or the parent doesn't have to think about it all the time. Of course this is a communication with the parent, the primary communicator. But like having grandparents having children over for Thanksgiving, you know how can you adapt your home, you know, to make that child not feel uncomfortable. What does that mean? Does that mean changing furniture around? Does that mean you know certain activities?
Speaker 3:We're going to do very specific activities as a family because this child can do this, and thinking about it that way is not only a gift to that kid, who deserves just a little bit of magic, just a little like that child deserves they deserve the world right, I mean your world. You know they deserve to be thought of like that, but also what it get. Because the parents are trying to think about that all the time and sometimes they can't because they're literally just doing life. They're literally it's day by day, minute by minute Like let's think about how we can do that. Let's frame our thinking about in every single thing. We're going to reteach our traditions, we're going to reteach our family and our friend circle to make sure that that child is not on the outside. That family unit is not on the outside ever.
Speaker 1:Right, oh, my goodness, like the just. If you just stop and literally just try to imagine being in the shoes and thinking how much it would mean to you for somebody to do that, I dare you to not have chills or feel emotional about it. You know, just like a thought that popped into my mind. You know, today's day and age, with social media, with so many people at our fingertips, we're huge fans of child life specialists, oh my gosh, obsessed with them, and most people think that a child life specialist is only for hospital settings, clinics, things like that. But there's a lot of child life specialists that are working with families for home settings or school settings, things like that. But there's a lot of child life specialists that are working with families for home settings or school settings, things like that. I encourage you supporters to, you know, start following some social media. You know influencers who are child life specialists. Send them a message.
Speaker 1:If you have a friend who has a child with very complex medical needs and you've never set up a play date because how on earth could that possibly work with your child, who's the same age but, you know, can run, play, leap and laugh, and their child is wheelchair bound, and you start. You know it's so typical. I see so many people hold themselves back because, like it's this self-imposed. I feel bad that my child can do this. I don't want to rub it in their face, no, no, no, I mean, I understand. Okay, first off, you're coming from a good place, but I'm going to tell you that it is lying to you.
Speaker 1:That voice reach out to a child life specialist and say, hey, I have this friend who has these conditions. I would love to to be able to make play dates a realistic thing, any ideas like even what are some questions that would be smart to ask? I will be shocked if you all can't find somebody to respond to you who would love to help you with that, because it would help them in their profession and I guarantee tons of other people would benefit from that information. Information, but even as simple as hey, you know, let's say, amy, you had a child with you know, you know some extreme, complex medical needs and for the longest time I haven't invited you over to our house or set up a play date because I just I know you're exhausted and it's so stressful and things like that.
Speaker 1:But with this information, this mindset, instead, if I reached out and I said, hey, amy, we would love to have our family spend time together, but we want to do it in a way that is comfortable and easy, not just for your child but for you and your husband, would it be better?
Speaker 1:You know what would be more fun or helpful to you If we came to your house where we're bringing the food, you're providing the space, but we're bringing the food and you know, or would you like to come to our house and you know we're happy to make some adaptations, just to hear that somebody cares enough to go off the course of normalcy for you. Yes, I can't tell you how life-changing that is for for parents, yes, and for yourself, because now you're opening yourself to experience more yes, and also it will give you the ability to, instead of, I think a lot of times we get unintentionally kind of lost in the sadness we feel for our friends and just be overwhelming hurt for them. And while, yes, it is hard as heck, absolutely, there are a lot of things that are just unbelievable, but it doesn't change that they are a parent who have a child slash, children that they love and who bring them joy. It may not look like yours, it probably doesn't, but they also have this gift of being able to appreciate things you've probably never noticed before.
Speaker 1:So lean in, be curious, learn from them and you'll grow, and I promise that it's such a beautiful way to enrich your life and expand it by making room and really adapting your life to be more inclusive.
Speaker 3:Yes, and the first step in doing this really is that first kind of pillar, that absorption and health literacy. Health literacy, like if you can get vocabulary or have a basic understanding to start asking specific questions to your friends of you know. So I read this online, are you? Are you thinking about doing this Like treatment? Is that a thing? Is it weird? Like what? That's like a first barrier step for that family member and that primary caretaker to be like oh, yeah, yeah, yeah. I mean like I'll.
Speaker 3:I'm sure most people would want to talk about it forever because it's such a huge thick, you know thing that permeates life at that stage of life. And so as you start this you know continued conversation that starts to make you feel more comfortable. All of a sudden, you're going to start to become more comfortable to be like, hey, let's like the play date thing. I went, like full-tail grandparents at Disney world play dates. It's like, oh my God, yes, yes, yes, yes, yes, yes. Offer, you know what, what, what would be most helpful? Um, we would love to do it. It's building empathy for my kid too. Like let's create a routine once a month. Once a month is it only for an hour or two hours because you know kids have attention spans. That's fine, or it's become a marathon thing. Um, I just I think that's great yeah, I, uh, boy this.
Speaker 1:I have enjoyed this conversation a ton like I feel really invigorated by it and it would be very keep going, but I feel like it's really important that people just really dive into what we just talked about and absorb it and think about how to apply it and who to apply it to. Uh. So the last point that I just want to pull back out as a thread to this uh that we, you know that we've had in this conversation, is that stay curious and beyond thinking in a curious way when you talk to a parent or a child, a patient, whoever it is, that is dealing with this medical challenge. Complexity. You you said it so well, amy, when you gave the example of hey, like is, uh, I read about this medical trial when I was trying to learn more about you.
Speaker 1:Know what your child is. You know what you all are dealing with as a family or facing? Is that something that you all are? Even, is that something you all are considering that, as opposed to, hey, I saw this medical trial, I, you know, maybe this is the answer for your kid? Yes, that is two very different conversations, because now, what you've done, even though you're trying to come from a good place. Do not accidentally put yourself in a false position of authority or like as somebody who has the the knowledge and the credibility to tell them what to do with their child or with their health, because that will get you out of the support circle.
Speaker 3:One hundred percent, mama, you can blink your eyes.
Speaker 1:I think it's really important to point out that one thing of what not to do. So stay curious. I'm so glad that you gave that example, amy, because honestly, I'm like I sometimes just shy away from asking anything about medical because I don't ever want to sound like I'm recommending something outside of my experience. And the way you said that I'm like, oh, that totally fits in a way that can say, hey, I was reading this because I want to be more educated as your friend, as the grandparent of this child, as the aunt, as the cousin, whatever. And I came across this. I was just curious, like what were your, what are your? You know, have you read this or have you heard of this? And if they say you know, yes, like don't ask. Well, well, don't assume. Well, why aren't you doing this for your kid? It sounds great, literally, what are your thoughts on it?
Speaker 3:and they'll tell you 100, it's not. It's not up for you to know, it's not up for you to uh you don't have to solve anything for them. You don't have to solve a thing, a, thing, a, thing, a thing, a.
Speaker 1:Thing no just just be there, like it be a beating heart in their lives that cares and who shows up, who doesn't run and hide when the going gets hard. You know, right, right, be there. And, amy, you've given us so many awesome tools with such a one, from such a wonderful perspective, I just love this conversation. Thank you so much are you kidding?
Speaker 3:heck, yeah, how can people find you?
Speaker 1:because now that we're like all into kidding, heck yeah, how can people find you, amy? Because now that we're like all into you and you're wonderful, how can people find you? And actually, yeah, amy Bradford, amy Bradford, amy Bradford.
Speaker 3:Amy Board, bradford. 50-50, everybody, it's going to be 50-50 for a long time. We have you can follow us on. I'm from Believe Limited, so that's that's our company. It's it's a fun follow. Um, you can find us on social media and then all of our podcasts are on Bloodstream Media Network, which is just a network of, uh, rare disease, um, focus, focus mainly on blood disorders, um, but you can find us over there and, um, yeah, listen to several podcasts if you get nerdy about that or you know all the things. But I will continue to follow you guys and I just I wish your community like the world.
Speaker 1:You guys are doing like the Lord's work Well, we're so grateful. All right, everybody, remember, if you're too tired, just hit share. Send this to your support circle. No, no explanation necessary. We've got your back. We've got you covered this episode, okay. So you all take care. And Amy, thanks so much for being here. We appreciate you.
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.
Speaker 3:Where hope is buried.
