Imagine being 21 years old, newly married, in the middle of dental school and excited to start a family, then finding yourself in the NICU with your newborn for four months, completely unexpected. When life presented Leah Crum with the surprise of raising a daughter with extremely rare medical needs, she embraced it with resilience and hope. On our podcast, Leah shares her uplifting journey, revealing how she transformed her worldview to celebrate her daughter Camilla's unique milestones, rather than conform to societal expectations. Her story isn't just one of parenting through adversity but a lesson in treating oneself with the same kindness we would offer the little ones we fiercely protect.
This episode is a tapestry of real emotions, strategies, and coping mechanisms that speak to any parent facing their own set of challenges. Leah's narrative takes us from the disarming moments of Camilla's early medical battles to finding joy in the everyday nuances of family life that redefine 'normal.' Her insights shed light on the power of initiating open conversations and finding strength in community support, proving that isolation can be conquered with a proactive stance and a compassionate heart.
As we wrap up our heartfelt discussion, Leah & Ashlyn leave us with valuable takeaways on personal growth, childhood nostalgia, and the creative outlets that help manage anxiety—be it walking the dog or crafting bead bracelets. Her vibrant spirit is a reminder to listen to our needs and find solace in the things that bring us simple pleasures. Join us for this powerful conversation, where we celebrate the courage it takes to face the hard things and do so together, for the sake of the children we love.
Please consider leaving a review if this episode resinated with you and sharing it with others so they too can feel supported and encouraged by the incredible courage and enthusiasm for life Leah shares with us.
Follow Leah Crum:
Instagram: https://www.instagram.com/leahcrum_/
Join us at the Celebration of Hope Gala: a Derby Affair on May 4th in Wooster, OH as we gather to celebrate the undeniable impact of hope and band together to carve a better path forward for families who find themselves on the journey of rising a child with medical challenges.
Tickets available now—secure your spot today! Space is limited, and we want you to be part of this extraordinary event. Individual tickets and tables are available for purchase.
PS - Can't attend but still want to make a difference? You can support the cause in various ways:
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Imagine being 21 years old, newly married, in the middle of dental school and excited to start a family, then finding yourself in the NICU with your newborn for four months, completely unexpected. When life presented Leah Crum with the surprise of raising a daughter with extremely rare medical needs, she embraced it with resilience and hope. On our podcast, Leah shares her uplifting journey, revealing how she transformed her worldview to celebrate her daughter Camilla's unique milestones, rather than conform to societal expectations. Her story isn't just one of parenting through adversity but a lesson in treating oneself with the same kindness we would offer the little ones we fiercely protect.
This episode is a tapestry of real emotions, strategies, and coping mechanisms that speak to any parent facing their own set of challenges. Leah's narrative takes us from the disarming moments of Camilla's early medical battles to finding joy in the everyday nuances of family life that redefine 'normal.' Her insights shed light on the power of initiating open conversations and finding strength in community support, proving that isolation can be conquered with a proactive stance and a compassionate heart.
As we wrap up our heartfelt discussion, Leah & Ashlyn leave us with valuable takeaways on personal growth, childhood nostalgia, and the creative outlets that help manage anxiety—be it walking the dog or crafting bead bracelets. Her vibrant spirit is a reminder to listen to our needs and find solace in the things that bring us simple pleasures. Join us for this powerful conversation, where we celebrate the courage it takes to face the hard things and do so together, for the sake of the children we love.
Please consider leaving a review if this episode resinated with you and sharing it with others so they too can feel supported and encouraged by the incredible courage and enthusiasm for life Leah shares with us.
Follow Leah Crum:
Instagram: https://www.instagram.com/leahcrum_/
Join us at the Celebration of Hope Gala: a Derby Affair on May 4th in Wooster, OH as we gather to celebrate the undeniable impact of hope and band together to carve a better path forward for families who find themselves on the journey of rising a child with medical challenges.
Tickets available now—secure your spot today! Space is limited, and we want you to be part of this extraordinary event. Individual tickets and tables are available for purchase.
PS - Can't attend but still want to make a difference? You can support the cause in various ways:
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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:Hello everyone, welcome to the empowered by hope podcast. It's your co-host, ashlyn, here today, and Emily is still out on medical leave and we all miss her so much. I'm sure you guys are very much looking forward to hearing somebody else's voice besides mine, but God has been so good and continues to keep bringing really wonderful, amazing people with these voices that just have to be heard into our grasp, and I'm so excited to bring on today's guest. And before I do, I just want to give a little bit of background about what we're going to be talking about, and of course, it will naturally go into some other areas, as it always does, but this person has had my attention for a while. I have been unashamedly stalking her account, one not only because she has a beautiful family and her girls are the cutest, but because she has this vivacious passion for life and this ability to walk the line of accepting reality but creating positivity in those moments, and she is a teacher to the world. From what I can see already. She's already taught me here in the last few minutes since we've been speaking, and I just cannot wait to share her with you all, because there's something that I know that we need from her today, and she is coming in with an impressive punch of knowledge, experience and just a beautiful heart that is changing the world, and I am so excited to welcome Leah Crumb on here today. You may know her from her social media accounts already. That's how I've stumbled across her and, like I said, I've quickly became addicted. I'm ready to join the fan club. I have a feeling everybody else will be too.
Speaker 1:But one of the things that I'm really really excited to lean in today and I want you all to hear this is that Leah shared in a video within the last couple of days, talking about this kind of aha moment, this realization that, like all of us do, when we find out we're going to have a child, we create this person in our head of who we think they're going to be and albeit who we think they're supposed to be. That's natural. We're human, we're moms, we're dads. That's part of the joy of having children is creating this idea of who, this person, who this life is going to become. And when she had her first child, camilla which I love the name, by the way, thank you when she had Camilla and Camilla was born with medical challenges that I will let Leah explain, she realized this is not the child that I've been creating in my mind. If you will, this isn't the whole picture that I had been painting is going to look very different than what I was expecting and, rather than trying to make Camilla into the person that Leah thinks she should be, she is trying to help her just be the best version of who she is at her core, and that's a beautiful statement and concept on its own. But then Leah takes it further in this video that we will link to, and this is where she, where you, really got to me, leah.
Speaker 1:You said, wow, what if I treated my own inner child the way that I treat my children? What if I was this kind to myself and understanding with myself and gave the grace and the love to myself that I give my children? And that is something I think everybody struggles with to a degree. But when you are an advocate for your child, I think it almost creates another level of challenge you have to overcome to be able to think of that, because when you're an advocate, man, it's so easy to kind of get stuck in that fight mode, right, like you were that, that protection that mama bear, dad bear or how, whatever you want to call it, you get so used to having to be on the defensive, but then it can be hard to take a step back and go and remember that you're a person too and your child needs to see you being there for yourself, because our children are going to grow up to some, you know, at some point.
Speaker 1:No-transcript, no matter what your child's diagnosis and no matter your child's prognosis, because when I I don't take it lightly when I say your child's going to grow up.
Speaker 1:Your Child's time on earth may not be as long as it should be, but regardless the time that we spend with our children, I know that we all want our children to see us being the best versions of ourselves, but maybe that doesn't mean changing ourselves, maybe that doesn't mean always putting greater expectations on ourselves or albeit Unrealistic expectations on ourselves, and I feel like Leah is the perfect person To come on here and talk to us today and show us how you're embracing that, that mindset. It's really a shift in how you think about your life and think about how you want to be a parent, and I'm really excited to dive into this. So, without any any more weight, leah, from beautiful, beautiful mom, beautiful woman. You guys should see her. She's gorgeous, her hair is on point today and I am super jealous as I sit here with my baseball cap on. But it's okay, leah, welcome to empowered by hope. Thank you so much for having me.
Speaker 3:Yes, yes, yes, I love everything that you're talking about. I was like I'm so excited for this, I can't wait to start talking. I'm so excited about this. I'm like one thing that really popped out to me right away Is you're like, oh, you get stuck in this fight mode and it just like gave me huge flashbacks to being in the NICU and being like, oh my gosh, like I can't take care of this baby. Like I can, like I'm dependent on all these strangers taking care of my baby and I don't even know if they love her. And being like, how am I supposed to do this? And just like the instant fighter flight and like Trying to grow out of that is so, so tricky. So I love that you brought that up.
Speaker 1:Absolutely, and that fighter flight mode that you're talking about, like that's literally human instinct. So I know that I personally have attacked myself almost for going through that process. Be like, oh my gosh, like level up mom, like come on, like get out of your own head. But the reality is, is we were programmed to do that, like that's how we protect our children, it's how we protect ourselves, and I always say it's just. Those are the moments that remember. That is just overwhelming love. Yeah, out of you. There is nothing to beat yourself up about for loving yourself, loving your child so much that it scares the ever-living. You know what out of you truly love. And so, leah, how about we back up? And I'm excited for people to you know, hear your message about this, but let's give people, if you don't mind, a little bit of background of how you joined us on this journey. You became a part of this club that we say nobody ever wanted to join. But, man, once you're in, you're a lifer and it's the club you're most grateful for.
Speaker 3:Yeah, it's so true. So my daughter Kamala, she was born with a rare genetic disorder. We had no idea. My pregnancy was totally normal. Everybody in their dog always wonders that like no, I was just like living my life. I newly married in college, like Do my thing. And then, you know, I was planning on going to dental school, like I had my full scholarship, I had a job I really loved in the field. And Kamala was born and it was crazy. Like we did emergency C-section and At one point the, as the the resuscitation team was working on her, somebody from the Nikki ran down and they're like what should we set up for her?
Speaker 3:And they're like we don't know. And they're like, well, what's wrong with her? And they're like we don't know. And they're like, okay, well, what should we set up for her? And they're like everything set up everything.
Speaker 3:Like my gosh, I have full body chills. It was terrible, it was so terrible. And I'm just laying there like literally strapped to the bed, as they're like stitching me back up. I'm like where's my baby? What's happening? And so it was just a really crazy start to motherhood.
Speaker 3:As you can imagine, my fight or flight was Insane, and then, on top of that. I was in a wheelchair for a week, so that was helpful at all and it was just. It was absolutely nuts and my life was completely turned around, like I thought we're gonna put this girl in ballet. I did ballet, I loved it. I want to do that with her. It'll be so fun. She could do soccer, her dad's a swimmer, her grandparents have a pool. Oh my gosh, the summers are gonna be so fun.
Speaker 3:And I had all these ideas built up in my head of, oh, we'll stay in Utah and it'll be so great and we can go up the canyon and we can put her in a hiking backpack. And then we have this baby and they tell us she probably won't be able to hold her head up by herself until she's three. And I'm thinking how am I supposed to put her in a hiking backpack? Then, like just all of these things that, I was like, oh my gosh, like that's not gonna happen for us. That's crazy. What are we going to do? And all of the doctors are telling us your life is gonna look this way, it's gonna look that way, this is what you can expect. And I was just like what are you talking about? That can't be real. That's not my life. Like that's not, that's not what I signed up for. Like I didn't go to the OBGYN and say, oh yeah, sure. Like I'll live in the hospital for four months, give me one of those babies. Like I Wasn't expecting any of this at all.
Speaker 3:I'm, and at one point we're meeting with the genetics team in there, trying to ask us some questions about our life, figure out who we were, how to support us. And as we're sitting there, the geneticist and one of the hospital staff, they're looking at us like we're from Mars and and they go oh my gosh, you guys are really 21 and 22 year old kids. And we're like, yeah, I'm 21. And they're like do you have family nearby? Like do you do your parents live close? And Carson's. Like my parents live in Arizona and as, like my parents live in Ohio. And they're like okay, so what are your plans? We're like I don't know.
Speaker 3:I was like I don't have no plans, like we don't even know half the things that you're saying, and they're like well, she probably has Down syndrome. We get all these other diagnoses and it comes out that she has something and nobody even knows what it's called, which is just crazy. And so we've just been on this huge roller coaster Of diagnosis, not a diagnosis, and, oh, this other problem pops up. Oh, but don't worry about it. Oh, my gosh, emergency surgery and a massive roller coaster. But I'm so grateful for it. Obviously, I would never wish this for her, but I'm so grateful for the ups and downs because I feel like they're so, um, cementing to me, like that Keeps me in the moment.
Speaker 3:I'm someone that I always love to be planning ahead. I love my to-do lists, I love checking off the things and thinking about how can I be as efficient as possible. And that's where, like, the dental school stuff comes in. That's why I wanted to do that as, like my gosh, I'll be so fun, and I still have that mentality of, okay, this, this, that, how can I stack, how can I layer, how can I be as efficient as possible. But then having all these Emergencies come up helps me be like. My kids are both home right now. That's awesome, so I'm gonna sit on the play mat with them and I'm gonna read Dr Seuss and this is a really good life that I have.
Speaker 1:Wow, bravo to you, because that is not an easy step to take, to that mindset shift, and I Feel humbled and honored that. I feel like I can say I've joined you in that space. It definitely took me some time to get there, but on a regular basis. I know, for example, like you know, emery, who's two and a half, and my son, cole, who's almost seven. They'll be arguing and it happens a lot their siblings, but my husband, who's an only child and only grandchild, as you can imagine. So it's a lot to him, but they'll be going after each other and Driving us a little bit crazy, but I still, through it all, have this overwhelming feeling of this is all healthy behavior.
Speaker 1:The fact that she's alive, to be here to argue with her brother is a gift, because she almost wasn't here. I literally watched her almost leave earth and this is something to be grateful for. And when I was telling you before we got on here that I'm a little extra sleep deprived right now because Emery is not the best sleeper. She struggles a lot with nighttime sleep and we think it has some thing to do probably with a lot of the medical trauma she experienced at nighttime repeatedly through various surgeries, and so she hasn't been at an age as old enough to really address those yet, but I think we're getting closer. But even when you know I'm not sleeping and no night is Regular and we're two and a half years into this, every time I see that child or hear her or she comes running in, I still have that gift of Thank God she's here to do this. Yeah, because I had to very quickly accept the reality that it wasn't a given.
Speaker 1:And that wasn't something I was prepared for in motherhood to realize that it's not just a given that you wake up in your child's there, it's not just a given that they're going to do all the things that you dream of them doing or being healthy enough to do those. None of those are guarantees. And I talked to another mom earlier this week and she shared that her she's very, very, very type A and makes me look like type Z because I'm nowhere near that but she was talking about like one of the greatest lessons she's learned since being on this and I kind of I'm curious if you relate to this and she said she learned to look at life. She said I have no expectations, but I appreciate everything, and through that what she means is she goes.
Speaker 1:When I say I don't have expectations, it doesn't mean like, not in a negative way. It means she's removed herself Like. She actively works on removing the barriers of expectations that this is what people say it was to be like, this is what my preconceived notions told me things should be like, and instead allow my family, allow myself, allow my child to experience life as it comes the highs, the lows, the good's, the bad's and just be in the moment and she said it has been the most freeing experienced and mindset shift. And I'm kind of curious, if you feel like, is that in line with what you were talking about a little bit?
Speaker 3:Yeah. So one blessing that I had growing up is that my family moved a lot Like all. The longest I've ever lived anywhere is four years to this day, and we moved all over the country. We lived in Saudi Arabia, we're in England for a little bit Canada, and when we lived in Canada we were in an East Indian neighborhood and he's always asking me about igloes and maple syrup and I'm like no roti all the way. That's where I was at. The whole neighborhood smelled like Indian spices. That's where I lived and that was such a blessing to me.
Speaker 3:I'm growing up because I learned very quickly that there's no such thing as normal and a lot of times when I was in American schools, kids would go oh my gosh, that's not even normal, that's so weird. And that was always interesting to me because I was like normal yeah, it might not be normal for Perrysburg Ohio, but it's pretty normal in Savannah Georgia. If you went down there they'd think that you're the weirdo and I started to realize how relative the term normal is. From a very young age I was like normal doesn't exist, like it just doesn't, and that was such a blessing for me to learn growing up. I forgot that a little bit. Once I was out of the house and trying to make my own life and you're learning so many things.
Speaker 3:And then Camilla came into the world and as I started to grow into that life, it just became my normal and so many people would tell me oh, we're so sorry for you. This must be so hard. We don't know how you do it. And every single time I think what are they talking about? This is just normal. Like I wake up, I change your diaper, we pack up, we go to the hospital. I'm friends with people at the hospital. This is normal. My daughter's excited to go. She gets to lay on a whole thing of crinkly paper. We have it.
Speaker 3:It's just interesting to me to remember that lesson and to see it applied in a way that hadn't been applied before, because usually it'd been. Culturally there's no such thing as normal. But then I think family life too. My life is gonna be different than your life and we both have medically complex kids and our lives are gonna be very different from people who are new to the term medically complex and they don't even know what that is. And that's totally fine, and having different normals within our own little circle is one of the things that makes life worth living. Otherwise it'd just be copy paste and we'd all be so boring. You know I agree.
Speaker 1:Yeah, it's something to celebrate the differences and something that it took me a little while to learn but I feel like was a really, really helpful. Part of my evolution on this journey was when somebody told me they said you know, your daughter is never going to know anything different than how she's growing up and what she's growing up with. That is her normal. So when we approach it with you know so much sympathy or sorrow or, you know, almost apologetic for it, that is their normal and it's not to call it abnormal or wrong or sad is really disheartening, and learning that lesson really helped me realize like, oh, I'm the only one, like, you know, if I'm the one looking at that, I'm the one bringing the negative, you know viewpoint to this, and I think it's very natural.
Speaker 1:I'm not faulting myself for having to learn about that, but this idea that, like that, is what our children know, so you know, learning to embrace them. That's why I think I loved what you were talking about is yes, of course you had an idea of who Camilla was going to be and what life was going to look like before you ever met her, but now that you, but once you did meet her and you're going to know her, you're letting her tell you who she is and you're enjoying that ride, and that just opens up a whole new way to experience parenthood, and one that is far more joyful, oh yeah, far more enjoyable, and it's just, it's like being like busting out of jail to me, because when you're so stuck in the grief of what you wanted which is a fair step we all have to go through that grieving process and it's something that I think is a never ending process.
Speaker 1:Truthfully, I think it comes and goes depending on various, you know, circumstances. You know I hear people talk a lot about. You know the typical milestones are one that can really kind of sometimes, you know, hurt. No-transcript. I'm sad right now that my friends two year olds are walking and minus it. Yeah, it's okay to be sad about that, but it doesn't mean you're sad about your child. It's okay to acknowledge you're allowed to have those feelings. But, my gosh, if your child walks at age four, age six, whatever, maybe your child never walks, but they learn a new skill, you're going to be just as thrilled. Actually, you're probably going to have a greater appreciation for it. I always say our kids are never too late to achieve what they achieve. They are right on time for a reason.
Speaker 3:Yeah, I love that. Yeah, and just kind of circling back to what you're saying about, sometimes we bring that negativity and that's something that I've been realizing recently. One thing that really irks me and I've been getting my kids out of the house more. I hate when people come up to us and they go oh, what does she have Like beauty? What are you talking about? And like I caught myself.
Speaker 3:I was coming out of the mic here. I was not a nice person. I apologize for anybody who met me at that point in my life, but there's one time where at the grocery store and someone came up to us and Camille had her helmet on. She was completely oxygen dependent. She had it on all day. So she had her helmet, her oxygen, her G tube line and they asked me something about oh, why did she look that way? And I looked at them and I was like why do you have an oompa, loompa spray tan? What it's like?
Speaker 3:Yeah, it's not nice to talk to people about the way they look and I was like I need to chill because if I stay like this, my girls are going to be too savage, like they can't listen to me talking like this as they grow up. But I don't want to raise kids like this. So I need to change a little bit and, as I've been growing back into, okay, I don't need to be so defensive. Like I can be kind to my inner child. They don't need to prove my worth to anybody. I don't need to prove my family's worth to anybody. Going out does not need to be an intense experience.
Speaker 3:I'm in charge of the way that I perceive the world and, as I've been realizing that, I've been like more actively kind to people as they ask us questions. And it's been the world of a difference, because people will come up and they still ask me questions like oh, can she even walk? And I say no, she has scruple pals in there. Oh well, I thought something was a little bit off about her and I'll just tell them like oh, we don't use the word off Like there's nothing wrong with her, she's just different.
Speaker 3:Her life is a little different in the way that yours looks and you know, a lot of times they'll just kind of sit there and look at me like oh, this is unknown territory. But I try and remember that disabled kids there aren't very many of them and not very many of them can go out of the house so we're interacting with to learn this Like probably nobody it's me, like I'm their learning experience. So I need to be patient with these people that don't know anything, and I want my girls to grow up being able to, like kindly talk to people about their life and not feeling like they always need to be on guard and advocating for themselves and protecting themselves and defending themselves Like no, bring your pepper spray and be kind, like that's the way we're doing it, okay.
Speaker 1:Okay, oh my gosh, leah, I just going to just take a quick moment and say I know everybody is loving you as much as I am loving you. You are phenomenal and I might need to leave a crumb t-shirt after this. I love when you said. I feel like that was way profound. You said I'm in charge of the way I perceive the world. I want to look at that a little bit more and look at it in terms of let's use this as a learning moment.
Speaker 1:I'm envisioning people sharing this podcast with people maybe friends or family who don't know how to be around their child or how to be actively engaged with their family, because there are a lot of people, like you said, truthfully, they're uncomfortable with the discomfort and perceived pain and struggles, and I don't think it's necessarily from a negative space. I think it's just it is true discomfort and we don't know what to do with that. A lot of times you go to master's school really quickly for that. When you have a child with medical challenges, you learn to become expert level really fast. But for the average person who doesn't have that experience, what would your advice be to them? Like you said, I'm in charge of the way I perceive the world. So to somebody who is maybe perceiving this all as negative. What would your advice be? To somebody who currently finds themselves uncomfortable or just unsure of how to interact?
Speaker 3:I am someone that I really value conversations and like to me, hard conversations aren't confrontational, like it's only confrontational if it's contentious. I know not everybody agrees with that, so putting that out there, if you don't align with this, that's okay. But for me, I love when people just say how it is. Like when my parents come over, they haven't seen her for a while. They're like how do we hold her? Like just ask me, dang it, and I'll help you. You know, like it's okay. And especially like when people come up to me out and about lots of times it's kids that will start the conversation, you know, because what does a seven year old know about rare genetic disorders? Zero, absolutely nothing. And so they'll come up and they'll be like, oh, what's this thing? And they'll point to her YouTube and I'll be like, oh, that's how she eats. And the mom will be, oh, we're so sorry. And I'm like you don't have to be sorry.
Speaker 3:Like how we make friends is we ask people about themselves. It's okay to ask people questions about themselves and, just being honest, like if your kids ask questions, let them ask the questions. It's so much weirder If you're like shh, shh, shh, walk away, walk away. Don't look at them like why we're not aliens, it's not contagious, you know, and I think, just being honest hey, I'm not really sure how to say this Like I don't get the chance to interact with kids very often that have disabilities, but your daughter's so beautiful, ask your question. I love when people start with talking to her or about her like she's a kid. Oh my God, you're so cute. I love your bows. What's this?
Speaker 1:Yeah right, how old is your daughter? She's beautiful, or you know, or I love to be. You know what is your kid like to do right now, or what is something that your child you know enjoys right now? It could guess what they still enjoy. They all enjoy things. They. They are people just like all of us.
Speaker 3:There's nothing, I think, like a lot of times, people who aren't in this world don't realize I talk to people pretty much every day about Camilla and what's going on with her and what she loves and what she needs help with, because we go to doctors appointments and we have therapies, so the conversation is so new for them. It's every day free, like it doesn't bother me. It's not new. I know how I'm going to answer you, so just ask your question. Like that's how you become friends with people and I think, when you look through it as a lens of like this is how you become friends with people and not oh my gosh, am I so nosy about this stranger? Like talking to random people wasn't weird before social media got big. Like we did that all the time and so it's totally fine. And I think it's just like, just don't stress about it, like it doesn't need to be a stressful experience at all. I love that.
Speaker 1:And I think that needs to be repeated for people. We will be putting that on blast. Just don't stress about it and I love your thought. It's so simple when you put it the way of think of this as a conversation of how do I become friends with this person, or I would like to get to know this person. Don't make it weird, just make it with positive intentions and should be golden for everybody.
Speaker 3:Yeah, and I think like a huge game changer for us. I hate talking to people like starting out, I moved my whole life so I was able to just skate by on the newness factor of I walk into the room and everybody would be like new girl, where are you from? And I never had to start conversations growing up ever. And so going out with a kid with a disability, it's like everybody's staring at you and nobody wants to start it and I'm like, well, you're staring at me, I'm staring at you. This is stupid. Why don't we just talk? So I've had to get over that and be like hi, how are you guys?
Speaker 3:And then I think that's just a game changer for special needs parents. And if they walk away, cool, they're not staring at you anymore. And if they want to talk to you, that's great too, and either way it's a win. And seeing it from that perspective of, well, I might as well give it the opportunity to be what it needs to be. And if they're still uncomfortable and they walk away, then all right, we can keep going about our day Like it's not something that you need to carry with you the rest of the day. Oh, and they didn't even talk to us Like who cares. You're never going to see him again. Don't let it ruin your day.
Speaker 1:You have so much wisdom, leah. I am super impressed and that feels really weak even just saying that, like there's so many thoughts that are going through my head about how it evolved. You are and I'm really grateful for you sharing this, because I feel, like you know, I've had a lot of conversations with a lot of families.
Speaker 1:And yeah one of the things that we talk about is often is that feeling of isolation, and I feel like you just gave us some really great advice on how to work through that isolation, which a lot of times I'm you may not, people may not necessarily love hearing it like this, but I think a lot of the isolation is self-induced and it's a protection mode, and I'm not saying you're wrong for doing it, because I did it too, I mean yeah, and we do it every day.
Speaker 3:I mean, anytime it's going cold season, I'm like no, we're not going to do that Exactly.
Speaker 1:But even isolating ourselves from a feelings perspective, isolating our thoughts, isolating ourselves from support, we can get so locked in and it's almost like we kind of assume like nobody out there wants to understand or no, people don't want to be supportive, and I think that's kind of one of the tricks that trauma can play on us.
Speaker 1:You know, and unfortunately, you know you think about. How often is it when you look at reviews, people are more aptly the negative review than they are a positive review, right? Well, I think life, our minds, kind of trick us into remembering those couple of negative experiences a lot more than all the positive ones, and it makes you know it takes being actively aware of that and choosing to be like okay, eight out of 10 times this goes great. Yes, those one or two times were really scarring, but, like you said, that's on them, it's not on you, it's not on your family, and it's okay that it didn't go smoother, that you know if there was one bad experience, then shame on them, move on, let it go, don't let it. Don't let it. All you're, you're shying.
Speaker 3:It's a hard thing to do, and one of my friends love her to death. We video each other throughout the day. I'll send her a video of me talking, and then we just like send it because they're like you're busy, I'm busy, we don't have time to FaceTime, but we'll do it this way, and a lot of times we'll send it but even be like okay, I just need to yell at you Like I'm yelling at them. You can literally skip this next video. I need to feel like somebody's gonna hear it, though, and then you can move on, and that's like such a game to your role.
Speaker 3:Call my mom, and I'll be like do you have five minutes for me to rant? And she'll be like, yeah, and I'll talk. Oh, my gosh, this girl and I'm good before we even leave the parking lot, you know, and I don't have to bring it home. Right, and like some people that I know dealt with voice memos or whatever. But figuring out a way to get it off, yeah, test, because I know I just let it roll off their shoulder. They're like no, it's in my heart, like that hurt me. And figuring out a way to be like okay, how do I detox? Where is the nearest soda shop. Okay, we're good.
Speaker 1:That is, yes, I yes I'm like clapping my hands for that, because that is something that we talk about so often is the most dangerous place for your thoughts and your feelings to stay is inside yourself. They grow, they get like monster features. They will tear you apart and it is amazing how, when you let them out and you release them and often with you know whether it's with somebody else, or even sometimes I know some people they prefer to just write it out, go for it. Or, you know, my therapist told me to do a talk to text Because sometimes I was like my hand's cramping up from writing and sometimes I don't always feel like actually speaking it to somebody. She's like so just do a speech, you know, speak to text, save it in your notes. And then she's like save those. And she's like you'll be amazed that like, sometimes like, and sometimes I do I go back and listen to those not very often, but sometimes I do and just the experience I have when I listen to those is I tend to be really proud of myself.
Speaker 1:I'm like okay, you got through that. That was a really hard time and you're better for it, and letting your steam off is a good thing. And but, like you said earlier, like we don't have to bite the person in front of us Because, truthfully, nobody really benefits from that right. Like we need people to learn, we need people to understand, and that is going to mean sometimes, or maybe a lot of time. We have to be the bigger person, we have to be willing to take the lead on that, and that can feel frustrating when you're like I'm having to take lead on a million other things in my life. My child needs me to take lead on everything my family does, and now I have to do it for strangers.
Speaker 3:Well, yeah, strangers hands right, chinese wants your kid.
Speaker 1:You're like, yeah, I'm just gonna say it's okay if you are in a place and it could come and go. If you don't have the patience or the capacity for somebody else, you can just simply tell somebody. You know I'm having today's, you know I appreciate it, but today's not my day right now, or I am really sorry, but I have somewhere else I have to, like I'm running late to get somewhere fast.
Speaker 1:you know I'd love to talk another time if I see you. You don't have to make yourself go through it, and that's okay.
Speaker 3:Oh, one thing too that I became like pretty comfortable doing because for a while I was like man. I feel like such a tool when I say this. But I became a lot more comfortable saying when people would ask me questions or say things. I would just ask them do you know that that's rude? And they just kind of look at me like like I feel like I'm not gonna freak out but like do you know that you're being rude? Maybe that's not your intention, maybe that's not what you're trying to communicate, but that's how it's coming across and I don't tell them how to fix it. Then I leave because I don't have any more time to deal with somebody who's being rude.
Speaker 3:But I think sometimes people don't even realize. Like you know, I spent the whole morning in the hospital. I'm trying to pick up diapers from a grocery store and you're asking me a million questions in a pretty demanding tone. If it violates the hip law, why are you asking about it? You don't know.
Speaker 3:And like just turning around and be like, do you know that you're being rude, like it puts a lot of people in their place because some people think they're very entitled to a lot of details about people's lives and I blame social media on that. I think a lot of people think that that can be any time, any day, any place, anyone. But it's not the case. And if you're feeling like, oh my gosh, my kid's still in the NICU or we're in the PICU or I just got this diagnosis, I don't even know what it means and I don't have the patience to help a 40 year old man talk to my two year old Like why am I helping someone figure that out? You can just say so, but you can. It doesn't need to be like oh, I have to make sure I'm like perfectly poised Barbie, it's okay to be like you're being rude. We don't have time for it.
Speaker 1:Bye, yes yes, Amen to that, that. Okay, I feel like that's a perfect kind of segue back to what we started talking about at the beginning of this conversation, when I told you you just like really fired me up with your aha moment in the shower. So why don't you take us back through that conversation you had with yourself a couple of days ago and this realization of what life can be like if we are as kind to ourselves and have, you know, an understanding to ourselves, supportive of ourselves as we are to our children? Because, like this example you were just talking about, I would never expect my child to answer the questions and walk a rude person through understanding. I wouldn't put that on my head, yeah it's so true.
Speaker 3:Yeah, the other day I was in the shower and I was like I mean, I figured this out because since having Camilla I've had like crazy anxiety. It's been a roller coaster and for obvious reasons, I know everybody would be like that's justified. I don't care, that's justified. I don't want it in my life Like unsubscribe from anxiety. I didn't figure this out and so I've been like trying to figure things out like that. And at the beginning of the year I was like okay, I'm just gonna make monthly goals, 2024 goals Like that has never worked for me. By February I forget what they are and if I wrote them down, I don't remember where I wrote it down. So we're not doing that, I'm just gonna do it by month.
Speaker 3:And I was like this year I really like I have an idea of who I want to be in my head and I just want to start doing things that she does. And I realized I was like wow, I think my 13 year old self is pretty cool because that's basically who I want to be. I was like I was getting up early, I was working out, I was nice to people, I was had a bunch of hobbies. Like I really like 13 year old me. She was pretty cool and like I don't know you could probably ask my mom and be like no 13 year old be able to wrap, but from the way I get, she was pretty great. And so I've been like trying to return to the best parts of my roots. I'm like, okay, I'm not gonna take the drama and do it, even like me, like I'm not doing that, but like I really liked making things with my hands, like I really liked playing the drums and I was in marching band and I played marumba and all these other instruments and I'm like why am I not doing that? There's no reason my kid's not for like four hours in the middle of the day I literally have time to do that. Like I really love knitting, why don't I do that? And I started realizing all these things that I don't do and I was like why am I not treating? Cause I treat my kids and ourselves like they're someone worth growing into. Like, oh, camilla has always great attributes. Paisley has always great attributes. Like I admire them so much. I really do, and I know it sounds crazy, cause she's three months old, but I'm like Paisley's so cool, like I wouldn't be like her when I grow up. And so I'm thinking about okay, I treat my kids in their person like that's someone valuable and worth being, but then I don't treat my inner person like that. I'm thinking, oh, she has it all together. Oh my gosh, that mom was dressed so cute at the grocery store. Why am I in slides and the sweatpants I slept in Like I'm beating myself up.
Speaker 3:Anytime I try and do something new, I'm like I wish I was more flexible. This is so embarrassing. Why. It's my first yoga class in like four years. Why should I be more flexible? That would be weird if I was more flexible. Today is day one, it's okay, it's totally fine. And I just started having these aha moments of like wow, I'm real brought to myself, like if anybody was like this to me, I wouldn't be friends with them. So what am I doing? And so I just started working through all of these things of, okay, I need to be kinder to myself. And if I wouldn't talk to my kids that way and if I wouldn't expect it of my kids, why am I expecting it of myself? I don't expect my kids to help Some middle-aged stranger understand why they're being rude.
Speaker 3:They don't, and like if someone tries to talk to Camilla and this happens all the time they'll get up to Camilla and they'll be like hi, sweetheart, oh my gosh. And Camilla will cover her eyes and go, ah, get away from me. And when they're like, oh well, I think she just yelled at me yeah, she doesn't want to talk to you. Have a great day. Though. That's my answer. I don't make her say hi to anybody. I don't make her hold hands with anybody. I don't let anybody kiss her. It's weird. I'm like she doesn't feel like talking to you. You're not grandma. Why should we talk to you? Like you're a rando and like I just let it be that. So I'm like why am I making myself feel like everybody's a little bestie? When I feel like I'm exhausted, it's okay.
Speaker 1:Yes, okay, there's a lot to unpack here, a lot of really positive things, okay. So let's go back to that. Can I just say how much I love the fact that you were talking about how cool 13-year-old you was and the fact that you have the ability to go back and look at that and then but to be like, okay, I know, like you know, at age 13, there are some limitations at that point of our age with you know, like the drama and handling confrontation stuff. So I love how you talked about looking back and picking, like, the best parts of yourself from your roots. Like that's a really empowering exercise to think about doing and something that might be really good for all of us to consider.
Speaker 1:Like, just take a few minutes and think back to, like what were some favorite times in your childhood or, you know, now I can say, my 20s, since I'm in my mid-30s what were some of the things that I was loving in my 20s, that were really fun and that brought out the best in me. And yeah, maybe you can't do all of them, like, I'm guessing you're not going back to marching band, but maybe you're thinking about, like you know, I really enjoyed playing instruments. So what are some things they like? What are your goals for working ready to come into March? So have you started thinking about like are you going to incorporate some of these things? Is that part of the goals you're setting for yourself?
Speaker 3:Yeah. So so many people in the past have been like oh for anxiety, just do this. And a lot of it is like sit in a warm bath and hold an ice cube in your mouth and that'll help grow. I hate sitting in the bath. I hate it. I really do Like. That feels like a complete waste of time. I don't understand the point in like bath salts, bath bombs I think they're them.
Speaker 1:I'm like no, I want to get them then no offense to people, but like there's something about sitting in the water that you're supposed to be getting clean in and then just sitting in it that I just don't necessarily understand. But I know that there are other people who it is like the best moment of their days and I am so happy you have that experience.
Speaker 3:Yeah, it's not for me, though. I'm like I'm glad there's somebody else keeping the bath bombs in business. It's not me though.
Speaker 1:So you're not going to be making bath bombs is what you're telling me, with your like for an activity with your hands. Ok, that's not the business that you're going to.
Speaker 3:Yeah, I'm just thinking about it and I'm like, ok, I need to start picking things that like work for people, like people really love going on walks, and so I was like, ok, january, that was my thing.
Speaker 3:I live in Arizona. It's 80 something degrees outside right now Like there's no reason I can't go for a walk every day with my dog in January. So in January I'm just going to start doing that like it's something I love, like it's something I enjoy. I'm just going to fake it till I make it and at the end of the month, if I'm like that whole month was fake I didn't actually ever like walking my dog Cool, now I know, and if I did, then great, add it to the list of things I like to do and things that are helpful to me, and like it's a win-win either way. And so, like this month, I started making just like hand knitting pillows for Camila's room that are like high contrast and like that's something that I feel like I'm still being a good mom, but I really love doing it, and so I started doing that. And March, we're buying a house.
Speaker 3:Oh that's right. Some walls and rena. I'm like that's going to be great, Like just thinking about doing things every month. That helped me get out of my head and do something that's productive but I can still relax and that I'm not having to think through as much.
Speaker 1:I love it. Oh, it absolutely does. I'm sitting here looking at my sash of bracelets. So after Emery's like first big run of surgeries, when she was in the hospital for a little over a month and it was pretty traumatic for a lot of reasons, and I remember somebody I think I saw it probably on, let's face it, it was probably on social media I saw an ad for like these bead bracelets and I remember seeing them and I was like those are really, it was really cute. But then, like I think I clicked on them and I was like I really don't need to spend $48 on a bracelet because, like this just doesn't really make sense to me right now.
Speaker 1:And where I was mentally like shopping for myself was the furthest thing from my head Now I was buying a extremely overpriced crib mattress that I had no idea when my daughter would be able to use it. Justified in my head at 2 in the morning it absolutely was. But yeah, like that's where I was. So but then when I got home and I was it's funny, I made it all the way through the hospital stay, like, don't get me wrong I was definitely getting upset and struggling at times, but it wasn't until I got home that I started having small panic attacks and I had never had those before, and I think it was just like it had built up, so high the anxiety. I'd been trying so hard to keep it together as best I could. But then when I got home one, I was terrified that I couldn't hit a buzzer and somebody, hopefully, show up to help. Two, I was terrified that I was going to miss something that she needed. And then three, just the fact that I had been living in straight up fight mode nonstop around the clock for over a month with no rest from it. I was not my best mental state, I just wasn't. I was not in a healthy place.
Speaker 1:And so I saw those bracelets and I remember thinking they can't be that hard to make. I wonder, maybe I could make a couple, and it's probably my ADD, but as my, I like to pretend that my husband finds it charming. I'm sure he does not at all. But when I decide to try something like I don't like just try a sample. I'm like, oh, let's go big on this.
Speaker 1:So I did all this research and found these, these bead providers that were like gemstones, but I was like really big on making sure they weren't being made by small children in some foreign country slave shops, so went and sourced those and I started making bracelets. And at first I was just making a few for myself and then my family and I was like, oh, these are actually kind of cute, could make them for our friends, then started making them for thank you guests and then people started asking me for them and that's when it stopped being fun. But what I found was like it was my first real therapy after everything with Emory, because after I would get her to go to sleep for like at least a little bit at night, I would just I would go out on my deck, on our covered deck, and I would just make these bracelets. Because it was mindless. But there was something really soothing about seeing what I was creating and it was kind of like this experience with gratification that, let's face it, on this journey we don't get a lot of that.
Speaker 3:Yeah, and like having paisley because she's neurotypical and I had her after Camilla. I'm like, oh, I get now why. People were like don't they grow up so fast? Because I was like no, like it doesn't crawl or anything like what are you talking about? And then I'm like oh, no, and it.
Speaker 3:And just like seeing, yeah, we don't have instant gratification and like that was one of the reasons that we got our dog. I was like Karson, I do therapy with Camilla every day, every day, and like she still can't see it and it's so hard for me to do therapy with her every day and it wasn't like we were doing an hour long session, but we're doing it every day. And like I know that she wants to sit and she's trying to sit and it's just not working and I feel like I'm falling short all the time and like just not good enough. And one of the reasons that we got a dog was because I was like I need somebody that I can teach and that can learn things and I can be like, okay, I'm a capable teacher, I'm going to keep trying with Camilla and I know that over time it's going to work out. And like lots of times when the kids go down for a nap, I'm like come here, I'm gonna teach you a trick, that's amazing.
Speaker 1:I love that and that is so honest. Thank you, because it's okay to like. I think sometimes people think that we have to just like, stay so positive all the time, and it's not like, yeah, it's really.
Speaker 3:I mean, camilla didn't even smile until she was like almost a year and so, like, when I get paisley up in the morning and now I understand why people are like, oh, this is so sad. But when I get paisley up in the morning she makes eye contact with me and she smiles. And even still, camilla doesn't always make eye contact with me because she's legally blind. That was like every morning I was getting up to take care of basically a newborn that didn't look at me, didn't smile, didn't laugh, nothing, and it was depressing and I was like I need a dog, like I need to wake up in the middle of the night to take someone out, to go to the bathroom and they're happy to see me, and like they know that they're happy to see me. I was like I need somebody that you know. When they do something wrong they're like oh my gosh, I'm so sorry.
Speaker 3:And there's like an emotional connection because I don't have that with Camilla yet and like as she's gotten older and she's grown into herself and we've moved somewhere that has a little elevation, she's been able to breathe easier. A lot of that has changed but like I laugh at it because I'm like I used to be the person that I was like I'll never be like a dog bomb. I'm like, no, I love our dog. Like she stands up and gives me hugs and I made her blanket like it's a little bit, but she's like she's the little fireball that keeps me going. And I'm like, okay, yeah, you're happy to see me, I'm happy to see my kids. I can have the puppy energy for my kids of hey, even if you're exhausted, I'm so happy to see you. What's going on low, bestie? And like to just steal the energy from the dog and channel it.
Speaker 1:You know that is a beautiful, beautiful concept, and can I just say like to me? I hear that and I'm like that is the type of self-care that we need to have conversations about. So many like people. I think I saw somebody the other day like there were countless times where I had to have a conversation internally in my head that there was no good reason to throat punch a person who asked me if I was practicing self-care. I'm sorry. Like to me.
Speaker 1:I'm like okay, let's just throw out the phrase self-care, or at least what people think it means, because it does not mean a manicure, it does not mean having hours to yourself every week, it does not mean, you know, massages and girls night out. No, like, there are times there's actually a lot of times that that's just literally not even a possibility. So let's talk about self-preservation. What are the things that we must do in order to be at the capacity needed to be what we want to be for our children and for ourselves? Like, what are the requirements? And like what I'm hearing when you talk about, like with your, like you recognize, like I need that positive input into me. I need that enthusiastic energy that's being put into me because you were always the one you know it was your output all the time. That, to me, is recognizing the type of self-care you needed, and Bravo to you yeah, it was such a saving grace too.
Speaker 3:I literally remember we were looking at dogs that are good for special needs kids and our good family dogs and we're trying to figure it out, and we saw that somebody was selling burner doodles and I was like shut up. And then we went over and we were like how much are you selling them for again? And they're like oh, 1500. And we're like why? Because the line of dogs that it was, like her, like dad or grandpa or something like that, was literally a search and rescue dog. We're like this dog, like they could sell this dog for five grand. Like why are they selling her so cheap? And they're like I'm pregnant, I'm eight months pregnant and we have seven puppies and two dogs in this house. Just take it. And so sounds good. And so like that's how we got into going, I love her so much.
Speaker 3:And like I get questions about her all the time because we would be like what she learned that in two weeks? And I'm like, yes, and like God knew I needed that. Like, honestly with a dog, like I had never experienced that and I, like God knew I needed this dog that would just like was smart and was like good at learning things, she has good sense of rescue. So when Camila's aspirating, she's like get your butt off the couch, your kid is silently choking. You like she, I love her so much and I'm like I'm so grateful that, like everything lined up, because I really do believe that, like the second, you give it to God and you're like, okay, I need help.
Speaker 3:Lots of times I don't even know how I help, need help. Like I'll say prayers and I'll be like, dear Lord, even though I'm struggling, like I'm humble enough to accept the help, however, I need it now. So whenever you want to send it, that'd be cool, because I'm like I don't know what I need. I usually don't even want help, like I just want to do it myself. But like, honestly, in these I I'm so grateful for the dog and the friends that I've met, when I've met them and the people that I met at the hospital and family when they come to town.
Speaker 3:On. Lots of times, when I take a step back, I realize, okay, if I'm not living in fight or flight and I'm being present in my life, I can see God moving the pieces to work things for my good, because life is going to be hard either way, and so it's really just a matter of what. Are you going to let the hard things do for you? Are they going to set you back and are you going to just cry about it all the time? Or are you going to cry about it, blow your nose and be like okay, let's do this?
Speaker 1:I don't think we could really end on a better note than that. That's what I want to remember from this conversation, and I am so thankful for everything you shared with us today. And you're somebody who, truthfully, I could just keep talking to you and just actually just keep listening to you, because you are just. You just are one of those people. You give life, leah you there are people who give light and there are people who take light, and you just shine so brightly and are so genuine and I just I feel like I'm learning from you, just sitting here watching you in your element, and your girls are so blessed to have you as their mom and and we are blessed that God line things up for you to be here today, because I know that, beyond just myself needing to hear these messages today, I know that there's a lot of our listeners out there who really needed to hear your words today. So thank you so much for joining us. You are a brilliant, beautiful soul and also, by the way, everybody okay.
Speaker 1:So her. She has two daughters, camilla Paisley, and a dog named Indigo. I'm pretty sure that if anybody's trying to figure out a name for their next kid or dog, we need to go to Leah because you have the coolest name ideas ever, so just going to put that out there. If you need a name, send a message to Leah because I think you are the name generator got you, girl, I love it.
Speaker 1:All right. Well, with that, everybody, we hope you're doing well. We're here for you. We love you.
Speaker 2:You've got this 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. Reach out to us at contact at charlottehopefoundationorg. And, last but not least, if you know if someone who could benefit from this podcast, please share we hope it's fair.