Bella Brave - Mom & Daughter Duo Spreading Hope & Joy Along their Medical Journey

Today's episode is a heartwarming and powerful testament to the strength of the human spirit, as we're joined by Kyla Thomson, mother to Bella of TikTok fame from the account Bella Brave. Kyla's moving narrative takes us from the deepest worries a parent can face to a horizon of hope, as she recounts the transformative effect of Bella's medical journey on their family. Amidst the laughter and tears, Kyla's story is one of a mother's fierce love and unwavering advocacy, transforming personal grief into a rallying cry for community and purpose.

As we navigate the complexities of parenting a child with serious health conditions, Kyla reveals how she turned feelings of isolation into a beacon of hope for others. The Thomson family's narrative is a profound reflection on the shared experiences that bind us, whether we are laughing in the dark or finding solace in the kindness of strangers online. Kyla's shift from a life focused inward to one of empathy and connection is an inspiring call to action, highlighting the critical need for humor, support systems, and a community that understands the relentless demands of a medical odyssey.

Our conversation culminates in a raw exploration of the challenges and triumphs in navigating the healthcare system, the life-saving power of trusting a parent's intuition, and the remarkable journey towards healing and resilience. Kyla's wisdom shines as she shares how therapy, including EMDR, served as a linchpin in her recovery from trauma, and reinforces the vital importance of preparedness for families embarking on similar paths. This episode promises not just insights, but a shared experience of strength, courage, and the unshakeable bond forged in the fires of adversity.

If you found this episode helpful, please consider sharing so that those who need to hear Kyla's message have a better chance of receiving it. Everyone knows someone and we never know who is waiting to hear that one message that can heal their pain. Thank you!

Kyla Thomson: https://linktr.ee/kylact

Kyla Thomson: https://linktr.ee/kylact

Instagram: @kylact https://www.instagram.com/kylact/

TikTok: KylaCT https://www.tiktok.com/search?q=kylact&t=1709190850795

Kyla is available to be your next Keynote Speaker: https://bella-brave.com/en-usd/pages/speaking-services

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

Transcript

Speaker 2: 0:13

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: 0:35

Hello everyone. It's Ashlyn here to welcome you back to the Empowered by Hope podcast. Unfortunately, emily cannot be with us today. She is dealing with some medical situations herself, so keep her in your prayers, but I know that she would love to be here with us today if she could, because we have the most amazing guest in store for you today, and I was telling her before we hopped on to actually record that my heartbeat was like racing, but purely from excitement, because this person who I get to speak to today is truly what I consider an actual celebrity slash superhero.

Speaker 1: 1:22

She is the mother in a mom and daughter duo that is inspiring others to be brave and share joy. They are TikTok sensations, to put it mildly, canadian celebrities as well, I would say. And then she's also a blonde bombshell. She's a beautiful, beautiful person inside and out. She's a wife, she's a mother to two kids and, most impressively to me, she is a black belt mom vacate. And I am so happy to have Ms Kyla Thompson on our podcast today, the mother of Bella. You might be familiar with their account, bella Brave on TikTok, which I need to remember before we end this that I would like some dance lessons from Bella If we could schedule something later. That would be awesome, because girl has got moves and I'm guessing she gets them from you. So, without any further ado, kyla, welcome to empowered by Hope podcast. How are you today?

Speaker 3: 2:22

Oh, thanks so much. I am doing really good. I'm happy, cat or not, canada today. Oh my gosh, happy family day. Do you guys celebrate family day in the States, or is that a Canadian?

Speaker 1: 2:33

thing that must be a. Canadian thing. Tell me about it. Today's president's day for us, but yours sounds more fun, yeah yeah, there's like.

Speaker 3: 2:41

There's like a whole list of things on my phone, but February 19th this year is family day and I was going to show you my calendar. There's like, yeah, I guess there's no way.

Speaker 2: 2:52

My calendar pops up.

Speaker 3: 2:53

I'm thinking all those things. Okay, so it's a family day. Islander day for Prince Edward Island, that's. Canadian province. Louis Real. Day for Manitoba we're in Saskatchewan. Okay, nova Scotia Heritage Day, family day for, like all the provinces. So it's a holiday. So my husband's home Kids are out of school. Islander day, louis Real, yeah, nova Scotia. My phone just like made them all go twice. Okay, that's impressive.

Speaker 1: 3:20

Well, go Canada. I think we should celebrate more in life, and it sounds like Canada's got that dialed in. Yeah.

Speaker 3: 3:27

Yeah, yeah, yeah. Family day. Everybody gets day off at work. It's great up here, nice. What are you doing down there?

Speaker 1: 3:36

I'm thinking like, where are our family day down here? But we just have to like sneak the kids out of school to do that Right. So now that we have you on the podcast, let's just do a little check in. How are you? Doing right now your home. You've been through, I don't know, the eight year war. You've been through everything but your home now. And just how are you? How is? How is mom Kyla doing?

Speaker 3: 4:05

I feel like I am. Honestly, you know, when you are raised in faith and you're constantly striving, when you're going through a hard time, to just rely on your hope. I feel like I'm finally in that spot where I'm like reaping reaping what I been longing for, and that's just like a new lease on life. Everything is easier, there's less stress, my daughter is thriving and surviving, my son is doing amazing, my husband is doing really good. You know it's yeah, it's been a decade of her medical journey and we're finally on the other side where we can say we know more about what her future will look like, instead of always guessing with fear or worried and just in constant prayer over you know, hoping for the best but ready for anything.

Speaker 3: 5:01

You know this, that constant feeling of worry every time I wake up in the morning about whether she's going to you know, you know receive her her bowel transplant that would save her life. That's all gone. We can wake up in the morning now and just plan fun things together and not not wait. You know watching our clocks like when's the next shoe going to drop? When's the next ball going to drop? When do we go back to hospital? Much less of that. Everything is planned now, and so, like overall, I'm kind of just still pinching myself that we're in this state of like everything we have hoped for is really coming out now through our, through our lives and through my daughter's life now that she's had her bowel transplant, and we're definitely just living it, living, living in this like happy state, with so much more freedom for her and all of us as a family as a whole.

Speaker 1: 5:58

Right. Well, I am so happy to hear that for all of you because you know, I've, I've been in that state of even when things were officially better, like I was told, everything is okay. Now. You know, go home, go live your life. It was a transition. I feel like I was so used to living in fear that, even through faith, like you said that, it was almost hard to accept when that hope became reality.

Speaker 1: 6:28

It was a transition for me to be able to actually accept it and live like it was happening rather than being like are you sure?

Speaker 1: 6:40

And I feel like that transition period can be overwhelming in its own right. It can be challenging and frustrating, but what I love that you illustrated is you made it through the tunnel, you got to the light, and you're not saying that everything's going to be smooth and you know, problem free forever, but you're letting yourselves live in this moment and at this point in time, right now, things are really good and my gosh is it deserved. Like you said, a decade of battles and literally worrying for your child's life. And look at you now and can I just say how much more incredible it makes it to look at your, just simply social media presence and the experience that you created throughout that time. You literally made so many joyful moments through what I'm guessing were extremely hard times and, like you said, as it's self-described mom and daughter do, inspiring others to be brave and share joy. When did you begin that? When did that become part of your journey?

Speaker 3: 7:56

I'd say that really like bloomed into my primary way of thinking, I would say in Bella's, like second or third, like when she was like two, three, okay, it really took that first year in hospital for my brain to really adjust to you know, chronic, you know complex issues, medical issues. With my first born, my child, my daughter, and there was really a lot of confusion, a lot of anger, a lot of like why me, a lot of. And behind all that I still had my faith and I would still be positive. You know, I remember the surgeon saying with Bella's first surgery, he I was just so confident with her first surgery I was just like there's no room for doubt because if I let any doubt in she might not make it. And I just stuck with that through every scenario.

Speaker 3: 9:01

And I mean we lived in hospital for the first two years of her life straight without going home, and so it was just hit after hit after hit with trauma. And I remember taking that first year and just thinking, you know, whether I was posting something on Facebook or my blog, I never really thought about how it would read for others. It was more or less in that time, just like this cry for help this, like help me understand this or I. This is so upsetting and it was like a lot of complaining, frustration, confusion, hurt that I was kind of spewing online.

Speaker 2: 9:41

Right.

Speaker 3: 9:42

And I didn't really realize until the second year that I'm like that is not getting me anywhere. I need to lean more on my faith and understanding, or not, like I need to lean more on God and not on my own understanding and just stick with the faith and stick with the hope and stick with the positivity, because in that time I learned that complaining was not getting me anywhere and it was depleting my energy, right. And then I did discover, you know, I found that when I could reword things or say things differently or look at things with a different perspective, and that help and calm and understanding came easier with every situation that was thrown at me while I was living in hospital, right. And I think that was shown to me through a real, real hard lesson, because there's not a lot of people that have to live in hospital for that long without going home. And so what I saw in hospital was I saw other moms and dads who didn't get to take their kids home. I was in a hospital room with other moms and dads that you know their kid was on life support or taken to the ICU and didn't come back to the ward where Bella and I were, and that really showed me like, hey, stop complaining, there are others that have it worse and you need to focus more on bringing a base of hope and joy to whatever circumstance you're under.

Speaker 3: 11:16

And so I would say, you know, by year two, I kind of learned that hard lesson. And then I was able to share more in a positive light, because I also learned like, as my audience grew and my followers grew, I knew, with Bella's rare conditions, I was like, okay, I really need to lean on the internet, I need to lean on the web and the social communities for help and support, because, number one, I couldn't leave this hospital room, you know, I couldn't go anywhere, right, and so I wanted to get support for myself. But also I learned that through doing that in a better way, I was also helping others, and then that in turn was healing my heart and helping me through. And from there I'm like, okay, I need to continue this way through my socials. Just, you know to, I didn't want to share fear. I didn't want to share my fear and confusion online when I knew there was others out there that had it worse or going through the same thing.

Speaker 2: 12:25

Right.

Speaker 1: 12:25

Yeah, I'm curious, as I was listening to you talk about that and thank you for, you know, being vulnerable and sharing that with us. When you say you felt like your first year that you were doing a lot of complaining, is it fair to also maybe look at that as you were doing a lot of grieving?

Speaker 3: 12:44

Yeah, definitely.

Speaker 3: 12:45

It was like in every everything that came out of my mouth or anything that I typed online or any conversation I had with somebody in the hallway, it was just everything was tainted with pain and grief and to me when I saw other kiddos and parents have it worse, then it looked like complaining.

Speaker 3: 13:08

To me like how dare you complain and grieve out loud when this mumbasa you didn't get to bring her daughter home, right? So just like there was this switch in my mind where I'm like, okay, when I talk out loud, I need to have a different filter on, because there's other people that can hear and I also, and I was concerned about how it would affect them because my own experiences I couldn't go to the mall. I would break down and see other parents being able to feed their babies and I couldn't feed mine. She had tubes, she had oxygen for a while, like my kid couldn't breathe on her own and I'd see I would break down and see other kids just running and playing on their own, right, all those. So then I knew what that felt like and I didn't want to put that feeling on anybody else.

Speaker 1: 14:04

Wow.

Speaker 3: 14:05

That's extremely selfless. It is because, yeah, no, go ahead, you're fine. No, it's fine. I'm like having a moment.

Speaker 1: 14:17

You do, because it's that's why I want to talk to you, because I mean it's. What you've gone through is very relatable, even though, like you said, bella has three extremely rare disorders.

Speaker 1: 14:33

And then to have them all together is like this trifecta of absolute uniqueness that nobody would really want to put the lottery for pick for the lottery, and yet what it sounds like you found through support is something that Emily and I strive to help people understand that you don't have to be walking the same exact path, your medical journeys don't have to be the same. There is this innate natural connection that occurs between parents or caregivers when your child is sick, with anything, is going through any type of medical challenge, pain, hurt. We can connect with each other on that level. Pain is pain, pain for your child, fear for your child. There's not really a competition on who's, who's really got it or who only has it a little bit, because the feeling of pain is something we all relate to as a human and understand, and especially when it's your child. I know, before I had Emory, my father had had a severe, severe stroke two years prior and was never able to speak or move on his own again and he passed away shortly before I found out.

Speaker 1: 16:01

I was expecting Emory and I remember thinking this is so awful. It was heartbreaking seeing my dad like that and fighting for him and learning to advocate, and we went through a lot of really challenging times. But I would very often say, at least it's not my child. That's the one thing that helps me get through this and then find out that my daughter is going to face something very challenging. That's going to have a lot of pain involved. That's going to be very scary.

Speaker 1: 16:41

And for the record, I still I can laugh about it today. But I remember my very first thought when it was confirmed by the doctor that she was going to be born with this very rare challenging condition. My first thought was dad, you had one job in heaven. You couldn't send her to me healthy Like you couldn't make sure she'd be okay. Really, yes, right. And then later on I came to believe I think my dad went to heaven right on time so that he could be more help and support to me from heaven, as kind of a guardian angel, than he could when he was stuck in this rehab nursing home, and so I see that as the gift now.

Speaker 1: 17:25

But I always laugh at what trauma. Sometimes I'm like you've got to find a way to laugh at some things, otherwise you'll cry all the time. But when I hear your story I guess I just want to say I think you are so selfless and so conscientious of others, which is very impressive I don't even know if that's the right word. I mean whatever is beyond that, to be able to think of others that much. But you've also had experiences none of us you know the other people haven't been, you know can relate to, and I just thank you for being willing to flip that switch, because I think you had to be in a position where you have that's a choice and you would have been completely justified. If you didn't make that choice, nobody could have faulted you. But look at where you are now. So I'm curious, after all these years, what is the biggest difference between Kyla today and the Kyla back then At the beginning of the journey?

Speaker 3: 18:28

That's crazy, that you asked that I was just thinking of touching on that as you were talking to, I was going to say, I think that a number one thing that I realized too when I had, you know, bella and I and I saw all these other kiddos with medical complex needs living in hospital, thinking about who I was before her. I've always told my husband this too, or a lot, when we have these like deep conversations. I'm just like I don't ever want to be the person I was before I had Bella, because to me that person was so selfish and I'm like I don't, I don't want to be like that. I don't want to be like that for my daughter, I don't want to be like that for my family and I don't want to be like that out in public.

Speaker 3: 19:14

And for anybody else and I, just when I saw other families with their kiddos with similar complex issues and I could see the way that my daughter could you know I could she had a real roller coaster of a life. So there was some really good moments and there were some really scary ones, but we always made it through those scary ones. And seeing other families not be able to really just put me in check constantly and I thought if I was any other way, like I was before Bella, it was just extremely selfish and I was like I can't do that, I can't do that for my daughter, I can't do that for my family is just no way I'm being that person again and that just you know I mean who lives in hospital and for that amount of time. So I was like I was like this is a real rare experience.

Speaker 3: 20:06

And then I started meeting other families that were in hospital just as long as me for different reasons and and I'm just thinking the entire time I never stepped foot in a hospital before my daughter. I never had any major medical issues. My family and friends never had any major medical issues. I never even knew the Royal McDonald House existed. I didn't know what children's hospitals were. So I'm just like, okay, I never want to be the type of person that doesn't know what they are and doesn't know how to support them. So I made that switch and I'm like, from now on, it's this way, because it's just like this is what matters, you know helping these people.

Speaker 3: 20:42

That's what matters in life. I just feel like I'm going to cry through your whole pocket.

Speaker 1: 20:46

That's okay. Grab your tissues.

Speaker 2: 20:49

I cry plenty.

Speaker 1: 20:51

And you know, I told you right before we hopped on it is it's because that's the reality of this. This is not like there's nothing light about this, but you know, somebody told me the other day that when you've gone through something like this, we live in this unique place of it's. Living in the and is what she called it. It's learning that balance of being able to experience extreme joy and happiness but also being able to be extremely sad and devastated for somebody else at the same time. It's learning to be hopeful at the same time as realistic. Like, we're constantly walking this line of and, and a lot of people don't have that perspective when they don't have this experience. And yeah gosh, you have mastered the. And I mean, was it Bella? So I'm curious, like the TikToks and whatnot, like, was that instigated by you or was that like, or was that a Bella request?

Speaker 3: 21:52

Oh, that was it. It all started with me just playing with the app and wanting to be relevant because I knew from my Instagram and my blog and Facebook I like by the time TikTok came around, I had been well into my advocating for medical complex families and kiddos. I'm like, okay, this is my purpose. I want to help families like ours, I want to help kids like Bella and social media best way to do that. And I just really learned a lot about social media being in isolation and hospital with Bella for so long. It was our only connection outside of that hospital room.

Speaker 3: 22:30

And so I'm like, okay, I want to stay relevant with this. And also, through Bella's bone marrow transplant when she was one, I learned that you know, kids as young as 18 can be bone marrow donors. Yeah, and so I'm like, okay, I really want to end being a teacher. And I, having taught in high schools, I was like, okay, I want to stay relevant for the younger generation too and speak to them and encourage them to understand what I wish I knew when I was a teenager about children's hospitals and supporting kiddos that don't get to go to schools as often or at all. And so I was like, just playing on TikTok, and I remember my friend of mine she is, she's so funny I call her like grandma. Grandma Brooke is my friend and she's younger than me, but she's like in bed by seven, knitting after her, knitting like. She's like we're both like grandma's, like sorry, but she's more of a grandma. So I'm like and she made a TikTok and I'm like, okay, brooke is making a TikTok, I need to understand how to use this app. So I was literally just I made an account, named it after the same as my Instagram, just to keep things simple.

Speaker 3: 23:37

So Kyla CT and I was just playing on the app and learning the features, and so my first video that went viral was a Bella drawing a picture. She was in grade two. She's drawing a picture for her project, her storybook project and not realizing at the time like, okay, this is gonna. I think about thinking back. I'm like, okay, I think this TikTok took off because she looks so young because of her dwarfism. Right here she is drawing this amazing picture, but people don't know that she's actually like almost seven and right, you know, and in grade two and writing stories, like like people, people looked at her like oh, she's, she's little, she must be like not even one, wow. So I think that's the reason why it took off.

Speaker 3: 24:26

But all I did was I was ways, yes, and I was just videoing her. You couldn't even see her face because I was just literally like sitting on my bed and it was COVID, right, like. So she was at school doing online learning with her teacher. So I was just like playing on my phone, pressed record, and she just happened to be drawing this picture, and then I use the music that TikTok suggested and I just pressed post. I don't even know if I wrote a caption. Now the things that I know now. I'm just like how. But that was the video that ended up going viral and so it hit like a million views overnight and I think that's kind of how a lot of accounts really get a large following is.

Speaker 3: 25:07

When things like that happen, it's kind of like when you're waiting for that moment is kind of like that happened for us then and what really triggered is not only going viral, but I had, like celebrities like Halsey the music singer, like personally messaged me and even just sharing that like she was. So she saw this TikTok because it was going viral, it came across her feet. She then told me that she went over to my Instagram and learned Bella's story and was very moved by her story and what she'd been through and wanted to send her a care package, knowing what she'd been through. So from there things just took off and for me, already wanting to be an advocate at that time, I was like, okay, I got a whole new platform. That's use it for good, another way to share our story and give some other kiddos some hope that are going through hard things.

Speaker 1: 26:05

What's amazing and that, to me, is such a perfect example of your purpose being Crystal Clear. It's obvious that I mean how many people post countless videos every single day and here yours takes off and to me I'm like that's just destiny. Like you were, you were literally put here to make a difference and be the voice for thousands, and you're doing a really great job of it. I'm curious. I want to go back to you know you talked about you know you couldn't go out and do typical things and you know so you relied on social media to you know to connect with others. But outside of that, how did you handle the isolation or maybe answer it to maybe a family who's in the hospital and knows that they're going to be in it for a very long time, but they're maybe still at the beginning, earlier stages? What was your advice be to those families who are facing that isolation of living in hospital with their child?

Speaker 3: 27:12

Yeah, bella and I, we not only were we in hospital, which is like isolating on its own, but there was 200 days before, during and after her bone marrow transplant.

Speaker 3: 27:24

So this is right, when she was from one year to almost two, and it was. It was like extreme isolation where nobody but my husband and I could enter the room and if we did, we were masked, gown, gloved, booties and could not be sick in any way, shape or form, and that was just to protect her through her bone marrow transplant. And I remember that being the most isolating time and we had to. I remember we had to get special permission my mom was able to visit once and apart from that, anybody could wave through the window of her hospital room and that was it to protect her from any, any infection going through bone marrow transplant, because that's where they bring your immune system to zero and give you new bone marrow to make a new immune system. So that was probably our most isolating time, consecutively through the last like 10 years, and so it was. It was really, I think, the most alone. We felt that I felt and I mean Bella was, I mean under one and then just, you know, just turning to.

Speaker 3: 28:29

So she you know, I relied a lot on her not remembering a lot of it still at that age, which gave me a little bit of like relief. Right, but can you, before I trail off, can you repeat your question, what you want me to focus on?

Speaker 1: 28:45

You are just fine, so I'm just so. My question was what would advice? What advice would you give to a parent or family who is hospitalized and knows that they're going to be hospitalized for the foreseeable future, and how can they handle that isolation outside of social media or maybe it is mostly social media?

Speaker 3: 29:09

Yeah, I did a few things to make it. I would say, really I don't want this to sound like simple or or weird, but we like simple things.

Speaker 3: 29:22

Yeah, like just make friends with your medical team, understand that they are going through sacrifices to be, there with you and with your kid and you will see things be much more helpful in your situation in that room. You're stuck in that room. Do your best to help others around you. Like Bella and I would walk the halls when we could, when we were allowed. We walk the halls and I would see the other kids, or like some teenagers or older kids in her, because she was just like one walking in, like you know, with her little like support thing, so she would, and they were also in isolation, couldn't leave their rooms, and so we just walk the hallway oncology unit and just waving in their window or like making funny faces or doing a little dance, would like that's the joy they got that day, you know, wow. So like, just try and don't think about being alone, but really open up your interactions with the people that are around you in the same situation. Try and understand their story, make a connection with them, whether it's your nurse or the cleaning staff or the family next to you, just try and open up to them. That was always easy for me.

Speaker 3: 30:35

I was very outgoing, I still am. I'm very outgoing. I was a teacher by trade, so it wasn't hard for me and it's another reason why I feel like I have the drive to maintain social media is I don't let other things affect me as much as other people commonly do. And and what else? Okay, I really love comedy. So like memes and gifts and really like good hearted comedy kept me going, so I would listen to, stand up on my phone or my iPad, I would post relatable memes on Bella's hospital door, like I made our. I decorated her entire room, we'd put lights up, put a word wall up because I'm a teacher, I taught her sign language in my spare time Like I would just do anything. We would draw on the windows and then I would put these memes up on the wall. And there were, and the nurses would howl and I'd have parents come by and I'd I'd see them laugh and I'm like, okay, this is working. You know what I mean.

Speaker 1: 31:38

Because they make you laugh. I love that.

Speaker 3: 31:41

Yeah, it would be really really funny. Funny stuff that was related to. It'd be like common memes, you know, often ones with like pets or like silly cartoons, but it would be related to medical life, Right? Anyone that walked by and saw these funny posters could have a laugh, Right?

Speaker 1: 32:00

I wish I'd had you as a neighbor. That's hilarious, I love that.

Speaker 3: 32:06

Yeah, I, I really any. You know I was far from home into children's hospital because our province didn't have one, so we were we are away from home, a lot of it in Calgary, which is the province Alberta's province next to us, and so I didn't really have access to my, my doctor back home or any doctor really. I didn't have the time or the energy to go out and look for one. So I really just tried to open up with the staff that would come in Bella's room and get support from them as well, as they were very willing.

Speaker 3: 32:37

Social work, the social worker for our unit. A lot of people still don't realize that utilizing your social worker has so many benefits and so many resources. I didn't even know when I didn't we were in hospital for the first six months and I didn't even know that the Royal McTown House was available because my nurses didn't know either to say, hey, contact the social worker, she can set you up with going to the Royal McTown House while you're here or finding financial support for me being so far from home and my husband needing to stay home to work, that sort of thing. So, yeah, really make connections with social workers, the medical staff that comes in and out of your room, the people next to you, the mom in the hallway. That really helped me.

Speaker 1: 33:23

That's beautiful. That reminds me I was listening to I'm a big fan of Oprah's personal podcast, and she was talking about one recently where she said you know, the best way to be seen is to focus on seeing others, like to let them know that you see them and that will, in turn, make you feel seen and feel part of something, so that you don't feel alone. And that's what I kept thinking as you were describing that, and you're so right. Leaning into your resources and social work's a great place to start, because I, too, like I'll be honest, like I didn't even know what social work did, and I think my preconceived notions of social work made me think it wasn't something that applied to us at the time. And once I did understand what they did, I could lean into the child life specialists were another amazing resource that helped so much, and not only just with my daughter, emery, but for myself and for my son. You know Emery's brother. They had resources for him to help him feel part of this equation and this crazy story that we were living. And you know he had a little sister that he was so excited to come home and then, when she was seven weeks old, she got taken away from him for over a month and he couldn't. He got to see her a couple of times but and then his mom came home a frazzled mess and having having support for him too was was very helpful. But connecting with other families once again going back to that, just a shared experience of knowing what it feels like to be scared for your child, to worry about your child it's like it just shaves away, like all the excess layers of BS that we have to go through to get to know somebody and you just connect like heart to heart right off the bat. And it's amazing how many times I've heard the same story as mine, which is some of my best friends now, who I'm so close to. I've never even met in person, but if I did I'd take a bus for them and for their child because we just connected so deeply and and that's one of those unexpected blessings and gifts that can come from this. So thank you for sharing that advice. I know that would help a lot of families.

Speaker 1: 35:53

One thing I wanted I had on my list that I wanted to ask you as especially. You know you're talking about your advocacy journey. So there's this idea. You know there's a difference between listening to somebody tell you know and listening to your inner knowing, and what it means by that is I think this is something I learned on my advocacy journey is that I had to learn to be okay with hearing people tell me no and be brave enough to trust that inner knowing that I know what I feel is different from what you're telling me.

Speaker 1: 36:32

But there's a reason. I have this gut feeling, or I cannot shake this, and so I'm going to advocate for this, because I have to choose to trust myself, simply because nobody knows my daughter better than I do and I don't ever do it in a way to undermine doctors but because of trusting that inner knowing. That's why I we ended up going to England last year for Emory's surgery that wasn't available in in the US, and, yeah, I talked to several doctors here who said you know, we can't say that we recommend that because we don't know enough about it, and what I heard from that was you also can't tell me no because you don't know enough about it, and that's not a good enough reason for me to not give my daughter what I can tell this inner knowing and is telling me is her best chance. Oh, who do we have visiting Waylon? This is my son, oh hi, waylon. And Waylon is how old he's? Five, five, oh my gosh, he's a cutie.

Speaker 3: 37:36

What? Daddy? Okay, but mom, he's in the shower, okay. Well, you can't be in here. Mommy's on her podcast. Go close the door, go Eat it. Don't talk to daddy in the shower, that's okay.

Speaker 1: 37:51

We love having kids come on the fun. It happens like every episode. Seriously, the reason that I have not had an interruption is I drove over to my parents house because I call my children like little. They're like little heat seekers. So even if I try to hide, if they know I'm home, even if I pretend I'm we try to pretend I'm not home they just find me like a heat-staking missile, there's just no getting away from them.

Speaker 1: 38:16

And when they want mom's attention, which I'm happy to answer most of the time, but on-cast time makes it a little more difficult. Okay, so let's jump back to what I wanted to ask you is, or what I was trying to get to is can you share a time or you know an experience where you had an inner, that inner, that inner knowing, that gut feeling that something needed to happen for Bella or something should not happen, and yet maybe, whether it was doctors or other people were telling you I don't know if that's the right move or if I would recommend that have you had any of those experiences?

Speaker 3: 38:58

Yeah, I've had a couple that are pretty significant. I remember Bella was about four months and she had been through, just been through septic shock and we almost lost her. I'm so sorry it was because that I know now. She was born with no immune system. She was born with SCID severe combined immune efficiency and in Canada at the time we didn't have screening for it. So now we do, thank goodness.

Speaker 3: 39:26

But when Bella was born we didn't. And so when she was born and we knew she had her sprungs, the bowel disease right away we didn't know it was long segment, we didn't know affected her whole bowel. So we were born with two life threatening conditions that our where we lived, they knew nothing about. We didn't have a children's hospital at the time in our province, so we were in a NICU with general surgeon general Pied surgeon trying to figure this out. He had some experience with her sprungs. Nobody had any idea what SCID was. We had no idea about even had it till she was 11 months old. So we were in hospital so long from her birth because primarily they're trying to figure out how to fix her bowels. She was vomiting eight to 10 times a day and not stuelling, you know she had her, her claustomy formed at three days old and had her. She went into septic shock after her third surgery on her ostomy because they went in, took out what they thought was enough of the her sprungs, the dead colon sold her back up two months later, still having the same problems. So they went in and thought, oh, maybe it's scar tissue, that surgery didn't help. Still at the same problems. Third time they go in they feel like they need to remove more colon. But that time she went into septic shock because, like when you're operating on the bowel, you're working with stool, right, and when you don't have an immune system to fight even the slightest infection or the common cold. That is why she went into septic shock and and I remember the doctors taking her that day and just they did not think she was going to survive.

Speaker 3: 41:11

She was three weeks in the PICU on, you know, like an induced coma, and she came out of it. But the thing was so this is month four and they have not figured out how to help my child. And I remember cycling through doctors every two weeks. A new pediatrician would come on beyond for the last two weeks and then the next two weeks and dealing with the same surgeon but now different pediatricians every week. So it was constant people trying to figure out what to do. So this doctor would work with me on these things for this two weeks and then a whole new doctor would come up and it was just this exhausting cycle of me saying what is wrong.

Speaker 3: 42:02

These are all the notes I have. These are I'm with her 24 seven, describing her symptoms, showing you what works, what doesn't. She would have the NG sump down her throat. She would be surviving off IVs and it can't feed her. Even when we try, she'd puke it back up. It was just like horrible every day and at this point now almost losing her and she's coming out of septic shock. I have the next cycle of pediatricians coming on with their residents with all of the attendings under them or whatever, and I remember this one coming in. I would always be apart of rounds because I'm like we gotta figure this out, because I don't think she's going to survive the next surgery. Like how are we going to get home If you?

Speaker 2: 42:45

guys can't figure this out.

Speaker 3: 42:47

So I remember going through my notes and she was also surviving off of antibiotics. We didn't know she didn't have an immune system, but we knew that she couldn't breathe, she couldn't function without antibiotics because she was always had a fever and sick but she had skin. We didn't know it. So, looking back at all the things we didn't know, these daily conversations with doctors were exhausting and I remember this new pediatrician coming in, the doctor that was on call that week and I think she looked at our case as just impossible. I think that's what she came in with, because I remember being in tears and knowing the system, knowing that they come in, they look at her, they don't change any plans because they don't want to mess anything up from what the surgeon wants to do. I knew the system, I knew how they worked.

Speaker 3: 43:39

At that point and I think she got frustrated with me because I knew the system. I knew that she was going to try and just like try to long for these two weeks until she could leave and someone else could deal with our us the problem, Because she didn't have an answer. And I think she was upset because I knew that and I addressed it and I called her on it and I said told her all the things, showed her my notes, told her all the things. I think what's going on? And that conversation ended with her, the physician, the specialist, looking at me and saying there is no magic pill for your doctor, for your daughter, there is no magic pill for her. And she walked out of the room.

Speaker 3: 44:18

I'll never forget it. It's like burned into my brain, because how horrible is that when you are exhausted and just trying to keep your child alive and the medical professionals are just let's get through this week. We don't know what's wrong with her. Let's get through this week. We don't know what's wrong with her. Try this, try that. When I'm sitting here telling you we've tried it 20 times, it's not doing anything, Don't tell me to do it again. And I felt in that moment that was the most defeated I've ever felt. And she walked out of the room and I just cried. I just cried for hours.

Speaker 1: 44:53

I'm so sorry you had that experience. That gives me chills, and not in a good way, yeah.

Speaker 3: 44:59

Yeah, I was like what's the time? If she had looked at my questioning and realized, you know like I've had this conversation with my daughter's immunologist, the one that conducted her bone marrow transplant, which was the magic pill, by the way, if you couldn't say a magic pill, right, you know like, if she had listened to me and just seen, like, okay, like why is this kid on antibiotics, why is this not working? If she would have just taken the time to really dive in, we could have understood more about why she doesn't have an immune system, you know why she couldn't fight this common surgery that she just had and it just sucks Cause. At that time it was like, no matter how hard I was advocating for my daughter, I just got shut down, shut down, shut down, and it was so upsetting. And you know, then a year went by. She was about oh, maybe not full year, she was about eight months when we, my husband and I, advocated to get transferred to children's hospital and that took so much work because the surgeon in our home province was like nope, I'm going to figure it out, this is her sprungs and that's it, and I'm going to figure it out with surgeries. And after eight months. We were like no, you're not, she's on oxygen, she's never needed oxygen. And now you're telling me I have to take my child home on oxygen when she's never needed it. I was like something is wrong that we don't know about. So finally they agreed to refer us to a children's hospital in the province next to us and once we got there I had never felt so seen by medical professionals. It was amazing.

Speaker 3: 46:37

I remember the GI, which is what we needed in our province and didn't have was a gastroenterologist. I remember him wanting all of my notes, taking my binder, looking at them through me, walking through them with me, talking, taking the time with me, because he wanted this just as bad. And he has been like he's been with my daughter number one. He's the RGI surgeon, dr Glant, from Alberta, calgary, alberta Children's Hospital, and he I'll never forget that he took the time and he was the one that saw things through all the way up until saying, okay, your daughter needs a bowel transplant. And it was just like this complete 180 from multiple physicians just doing nothing, not really listening, not really taking the time, telling me there's no magic pills or you're just going to live with this complex, difficult life for your daughter. I don't know how to help you. Rotating door of pediatricians just like sorry, not sure what to do this week, wait for the next one to come in. And then finally someone listened.

Speaker 2: 47:51

Right.

Speaker 1: 47:52

Obviously, there's no going back, but for any, you know, we always we encourage medical professionals to listen to our podcast as well, because that's part of our mission is to help them. The care providers understand their role in helping families and helping to achieve the child's best interest, highest quality of life, by including the parents in figuring things out. Because, like we said, you know, nobody knows our child better than we do and we need to be a part of that team and work together. What do you wish that those doctors had done at that hospital differently? Is there? What is something you wish that they knew then that they didn't act on?

Speaker 3: 48:38

I really wish I mean this was 2013, 14. And I mean it wasn't a children's hospital, but I just wish they would have made been more aware of rare disease and understanding how rare disease is discovered in a kid. Just been more aware of something unexpected can actually be true, can actually be going on. Just be open to it. Don't think that every mom is just a crazy hysterical wreck. You know, take time with them. Just think outside the box, because you never know. Use your medical like we rely. We rely on you to take your, you know your education, what you've done in the medical field for the last, whatever it was 10, 15, 20 years. We rely on you, as the mom or the dad or the caregiver, to use that to help us solve these problems.

Speaker 2: 49:38

We rely on ourselves. We need you.

Speaker 3: 49:40

We haven't been to university for eight years and you know in a specialty that you have been. But we know the other side of things that you don't know. You know the last 16 hours of you know, or 24, seven eyes on the patient, knowing every second of every reaction or symptom, and I really felt that that was. You know, that was in the Children's Hospital. That's more like the family centered care, whereas at the time the medical professionals were Bella started out at didn't have that.

Speaker 2: 50:16

They had.

Speaker 3: 50:17

I'm the specialist. I know what needs to be done. But also in our province I learned very quickly knowing the system, learning the system that we also had nurses that worked 16 hour shifts without a break.

Speaker 2: 50:34

They had four patients.

Speaker 3: 50:36

We had, you know, residents working 26 hour shifts. I would have them tell me that I knew it was happening. I knew they were exhausted and that was part of the fear of me not wanting to leave my daughter side. It's like they aren't going to. You know she's going to be vomiting and they're not going to catch it because they're in another room with another kid, right. So I couldn't. I never felt like I could leave my daughter side because I knew these nurses and these doctors were exhausted, with not only the hours they had to put in or and the amount of patients that they had. And I didn't know that wasn't the way it was supposed to be till I went to a whole another province and a whole another Children's Hospital, when you know the nurses could work eight hours or 12 hours, with solid breaks and coverage, and you know pediatricians that weren't like drowning in the hours that they had spent in the hospital.

Speaker 1: 51:30

Right. Well, I think everything that you just touched on is crucial and I do think you know I've personally am seeing a chance, have seen the change or been the recipient of some of the more family centric approach. I think there's a lot of ground to cover in achieving that and for that to be the standard.

Speaker 1: 51:53

I also think part of that is educating and empowering families to expect that, that it's that that is something that is okay to expect as part of the care plan for your child, that you be included, that your voice be heard and respected and seen as valuable because it is. You know, my daughter almost died after her first surgery. You know, I watched her code twice and it was due to absolute accidental human error. But and this was at a world-class hospital here in the States and it was, I feel, like the naivety I had was stripped away of thinking. My role is to hand my child over to medical professionals and then they make her better. And I'm just supposed and I am mom, I had no idea that I would have to explain to a quote unquote pain specialist that my daughter's convulsing body while screaming and crying meant she was in pain and that she wasn't just crying because she's a baby. Yeah, and you know that hurt. The noise she was making when she was breathing was not acceptable breathing sound. She was not congested, her excavation had been extremely difficult and then she had an emergency reintubation after coding and then had another difficult exhibition. And so I was like some, you know, and it took me pushing, saying like look, this steroid treatment that you're doing right now. We've done it five days in a row and everybody keeps telling me that this should have been gone after two to three days. And here we are in day five and day six and day seven, and I finally said the next person to walk into our room had better be a pulmonologist or I don't want to see them.

Speaker 1: 53:55

Yeah, and it was kind of. I mean, that was one of the harder you know, this is a pun, but harder pills to swallow in life. I feel like one of the harder lessons to learn is that you can't and I don't mean this negatively, is just a reality. You cannot just blindly trust medical professionals explicitly and I don't say that in a way to undermine them. There are tons of brilliant people out there doing amazing work and wanting the best for our children. I say it from the standpoint of. I think it's important to realize that they are truly doing their. They might be doing their best, but they cannot do it alone. They do not know everything. They simply can't, because they've not seen everything and, like you said with Bella, in her case she had something that was out of the box, it was atypical, it wasn't something that they were even searching for, because they weren't thinking it could be beyond their own experience, and to have you step in and to advocate for her saved her life, yeah.

Speaker 3: 54:59

And it wasn't the only time.

Speaker 1: 55:02

Now I have a feeling you could write a book on time. Sit that is there another time you want to touch on?

Speaker 3: 55:08

Yeah, there is. It's just just listening to your story. With your daughter, I went through like almost the exact same experience. She I just remember holding her after her surgery. This is before she went into septic shock. I had no idea what septic shock was and all I know is she was recovering. I knew the morphine plan and I just couldn't console her. She was in and out of screaming episodes and at four months old and I was I was like this isn't right.

Speaker 3: 55:43

And I remember the nurse who, like bless her new heart, she was young and learning, she wasn't full time, she's in training and she was just like she saw me as an exhausted mom. It was like I'll take her, you just go for a walk. But at that time I was like no, I said there's something wrong. And in that moment Bella wasn't breathing. And I remember her calling down the hallway for help and me chasing after and just saying help and then seeing the pediatricians run on the hallway because they didn't even call code blue and then they took her intubated or right in front of me and rushed her to the PICU.

Speaker 3: 56:24

Yeah, I remember my husband and I just sitting in the corner like sobbing. Yeah, I didn't know if we'd see her again and I just like it was just so scary in the moment that it's like if I would have just handed her over to this nurse, just thinking, ok, she's the medical professional here that I need to trust, I wouldn't she, she wouldn't have survived, no. And then at the same, the same sort of you know that that cry for help, with your medical team saying listen to me, happen again when we discovered how she, how we discovered she had skin. So this is like this would be the second major episode where, like it sounds conceited, but it's like I saved her life, but no it doesn't see it at all, but people don't realize the weight that that holds.

Speaker 3: 57:17

I don't. I don't want to be the one saving her life. I'm the mom living in this hospital with people that that's their job. But now I'm feeling I can't leave my daughter's side because I see the medical professionals exhausted.

Speaker 3: 57:31

It's a terrible one saving her life I never felt so scared to have it all on my shoulders. And then the second time that this happened was was because we didn't know she had skin. And so here we are in. Now we're in the Children's Hospital where I'm thinking, ok, I'm being heard, I'm being seen, things are going to get better and she's not coming off oxygen. We're dealing with her bowels great, it's going good. And then she's not coming off oxygen. And so there they're thinking we have the bowels dealt with and now it's about getting her home on oxygen. And I'm sitting here like my daughter's 10 months old. She's never needed oxygen.

Speaker 3: 58:16

We came on a referral from Respirology to this hospital alongside her bowels and I'm like, no, you're not sending me home with my daughter on oxygen if you can't even tell me why she's on oxygen. She's not a dreamy. She was weak over to like that she had was born with very good lungs. I'm like, no, like you guys like, and I just remember the one pediatrician on that week really sternly saying to me like she was just like. You know, maybe my, maybe my mind blocked it out, but I just remember her basically shaming me for for wanting to stay in hospital. She was basically the words was just like you don't, you don't get a free ride here because you're too scared to take your kid home on oxygen. That's what she needs, take her home on it. And my gosh attitude and I was just like suffocating with in conversations with this, with this lady, because I'm like, no, this, this isn't okay, I'm too scared to go home. Number one, number two you can. You guys can't even tell me why she's needing oxygen when it was literally for the calm and cold, because she had no immune system and she couldn't fight infections so she needed oxygen to breathe. Alarm Bell should be going off if your kidneys oxygen for the common cold and they weren't right until it was like God's grace, god's plan, the day that this pediatrician was done and it was a shift over to another two weeks of a different pediatrician blesses hard. He's exactly who I needed that week.

Speaker 3: 59:51

That night I had felt a lump in Bella's armpit and lumps on her neck and they were in inflamed lymph nodes. And which is her body saying, hey, I don't have T cells, I don't have B cells, so my lymph nodes are going to swell up. Because what do I do? That was what her body was doing, because she had no immune system. So I felt this literal golf ball in her armpit when I picked it up and I'm like that's not right. So it was the first thing I told.

Speaker 3: 1:00:15

This guy went on his first shift shift this pediatrician and I was like what, what is this in her armpit? And his brain immediately went to immune system issues and he got immunology involved. That day they did a, they set her up for a biopsy and we found out that week she had skid. She was 11 months old and if I would have listened to that other pediatrician and took my doctor, my daughter, home on oxygen, she would have never left because she would have been. When you do, when you have skid, you don't have an immune system and so your T cells and your B cells you have not and you don't have infection fighters and you don't have viral fighters. So if I would have even given her her one year immunizations that they have live vaccines at one year, it would have killed her.

Speaker 3: 1:01:08

Oh my gosh. And a part of the history in that is what our other doctors should have seen through a simple blood test was at her. I think it was her. You know, kids have like their first year of life. They have immunizations, vaccines. I think it was like three months in her six months or something. She made zero antibodies from those and that should have been their first sign as to this.

Speaker 3: 1:01:35

Kids not making antibodies, what's wrong? Right, and they never looked into it. They never. They never realized it. So when we were in hospital for those 11 months and she was on oxygen and I'm saying, hey, why is she needing oxygen? They could have done a blood test. They could have tested her antibody making level and seen she wasn't making any and figured it out then. And they didn't. So when we got our immunology specialists involved, they did the biopsy, found she had skid. I'll never forget Dr Wright, nicola Wright from Alberta Children's. She's amazing, she. She's just an amazing human being. But she came in and when you have a medical professional like that, tell you that you don't know how your child is alive. That sets you straight.

Speaker 1: 1:02:23

I was just wondering this whole time. I mean, she's a, it's a miracle, yeah, and God's purpose, for God's will, that she's supposed to be here.

Speaker 3: 1:02:34

Yeah, she was like there. When she realized that not only did she have for bowel surgeries at that time, but had these surgeries through with no immune system. She said to me she's like I do not understand how your child is alive right now, and then we need to set her up for a bone marrow transplant. And that was the first time I learned that she had no immune system. And it's because I picked her up and said hey, doctor, there's a lump in her armpit. So again, it was the second time that I had saved my child's life. But in that is so much trauma because it's like I just felt the weight on me to keep her alive and I wanted to give that to the medical professionals. I wanted them to be the ones to save her life so that that weight could be lifted off of me. But it was too late.

Speaker 1: 1:03:25

Have you found your way back to being able to give that trust? Did that turn around at some point for you or no?

Speaker 3: 1:03:33

Oh yeah, but through a lot of years of like therapy with a mental health nurse and a lot of like prayer and comfort from my family and friends, it's like my body is my brain is just like I cry when I bring it up because it's just so painful to think about.

Speaker 1: 1:03:59

But Thank you for sharing that with us. Yeah, I can share it now.

Speaker 3: 1:04:05

I used to. There was a time when I couldn't. It would like, it would be so hard to even just get the words out but, I've pushed through that and I'm able to now, so it's so totally okay.

Speaker 1: 1:04:22

Yeah, I don't think I pushed through it so much as, like I was given a lifeline of being referred to somebody for EMDR. I'm not sure if you've ever have you utilized that.

Speaker 3: 1:04:37

I don't.

Speaker 1: 1:04:37

EMDR. Emdr, it's a type of therapy for trauma, specifically because what I found is so. I watched it. Similarly, I watched Emery. After she'd been, she came out of surgery and they were supposed to bring us back to PACU within 30 minutes. 45 minutes goes by, an hour goes by and then it gets to be an hour and a half. But I'm at that point I'm like what, take me to my child and they're like we're sorry, we're still trying to calm her down, she's pretty upset. And I said what do you mean? She's upset, she's supposed to be intubated and like, basically like sedated. And they said, well, she's not intubated, she's extubated and she's very, she's struggling. I said, well, then, take me back to her right now. And I'll never forget going into the PACU 10 o'clock at night and there's nobody else there.

Speaker 1: 1:05:39

And the second they opened the door I could hear this child and I knew it was mine screaming, bloody, murder, and she's seven weeks old. And when I got back there and her whole body is shaking, she can't even open her eyes and she's just in excruciating pain and struggling. And she had a nurse who was attending her, had been doing it for like it was more than 30 years and she said she's at one point she goes. Never in my career have I ever given an infant nearly as many narcotics as I'm giving this child, and it's not working. She's like something is very wrong and I'm sorry, she's like, but I need you to. She's like I need you to advocate for her, because I'm telling the doctor everything I can but nothing is helping. And so when she went, finally I finally threw enough of the fit. I was like, look, you're obviously unable to help her here. You're telling me that the things that she needs are in PICU, but you're scared to move her because she's not stable. We don't have a choice. Yeah, get her to PICU.

Speaker 1: 1:06:42

And then they ended up accidentally, because of all the chaos, she didn't arrive with the orders they were told she would be arriving, with, which she was supposed to be intubated, and she ended up accidentally being overdosed with morphine, like significantly overdosed. So, literally the first minute I laid down, at 11, or sorry, no, 1258, I finally, like sat down on the couch next to her bed because I'd been standing with her for the entire time. I mean, it was hell is the only words to describe that time. And then, at exactly one AM, all of a sudden, like to this day I don't even like to hear the microwave beep, it makes my eye twitch. All these alarm bells started going off and they had turned the lights off, really damn.

Speaker 1: 1:07:30

And all of a sudden the lights get flipped up and of course I had jumped up and I look at her and I literally remember thinking to myself I must be so tired, I'm not seeing right. She's blue, like her entire body was blue, and it had happened in a matter of moments. And then there was a minimum of like, and then you talked about all the people rushing in, seeing I think there were no less than 13 or 14 medical professionals surrounding my daughter. Somebody was literally up on the bed over top of her doing like, bagging her, trying to do the breathing for her until they could get her stable enough to intubate, and I just I'm only describing this because it's like. It's like of all the things in life like.

Speaker 1: 1:08:22

I remember that moment, like it played like a movie for me. But my problem was until I did EMDR for months and months the slightest sound of her being upset and it could be over like a little thing, but the second I would hear any sound of a cry or I would hear a beep somewhere, I was transported right back to reliving that moment and I would relive that moment multiple times every day and I couldn't talk about it without feeling like I was in it again. And the EMDR what it did was it took me back through those memories and it helped me to catalog it in my brain as an actual memory and not an active scene in my life, if that makes sense, and-.

Speaker 3: 1:09:08

I remember now. I do remember that now that term with I did mental health top therapy with my nurse for two years and I remember her working through that with me now and all the words you're using are coming back to me and it's crazy because now she helped me so much like do exactly what you just described, and that's why I can share now because I remember being in sessions with her going through this and I just I always refer to it as talk therapy, but it is EMDR and I remember we would have to stop because I couldn't breathe Like I would-.

Speaker 1: 1:09:53

I was about to say I couldn't breathe through.

Speaker 3: 1:09:54

I remember, I don't even know, how many sessions?

Speaker 1: 1:09:56

it took to go through it, and this was all just over a couple of hours and it took weeks to be able to even get through it without my body going into fight.

Speaker 1: 1:10:08

I always say I went into fight and flight mode at the same time. Like I remember vividly, you know, when she was in Pachio. I'm always grateful that I had just enough mindfulness, like I was at the end of my ever living rope. But I remember getting to the point like I was staring at the wall, the dry wall, and I never in my life wanted to hit something so much. I remember thinking like I just wanna punch this wall. I have so much rage inside of me because my daughter should not be feeling any of this. That was the promise. Like the surgery was supposed to be the scary part, not the afterwards. You know, and little did I know, that's when the real battle starts. Yeah, yeah, nap during surgery when you can.

Speaker 1: 1:10:55

Folks, if you're listening to this, I mean even though it's oh yeah, please nap, please rest Anything you can to try to feel yourself up during surgery, because it's afterwards. You gotta be ready to come out with guns blazing a lot of the time.

Speaker 3: 1:11:08

Yeah.

Speaker 1: 1:11:09

And I remember thinking I was like, literally like pulling my fist back and then like that voice inside of me saying, if you punch the wall, there's a chance they might take you away from her, like you don't wanna be seen as somebody who isn't stable, that can't be here. And I was like and I cannot be taken away from her. So I dug my hand, my fingernails, into the palm of my hand so deep that my hands, like I, had bleeding marks on my hand that night and I mean it helped a little bit. It was weird. The pain kinda helped release a little bit of all the anger I was feeling. But those experiences stay with you forever.

Speaker 1: 1:11:51

But at the same time I think it's important to acknowledge or like it's part of my story to acknowledge anyway is that while that is the worst experience and I hated every second of it, the gift that I got from it is this new perspective.

Speaker 1: 1:12:10

I tell people that was the moment in life that the veil was taken off of my eyes and I feel like I see life so much more for what it is the value of things, like the fact that majority of the time I can appreciate when I hear my daughter and my son arguing because that's something normal, the fact that tons of laundry is normal, the fact that I remember she struggled with sleep she still does, honestly because of how much trauma she had at night, but the fact, like I remember I would just cry every time she would wake up during the night and I could go pick her up and I just remember being so thankful that she was there to pick up and that I could actually do something for her and it's I mean you could hear that and some people might think, oh, that sounds really sad and tragic, but for me I'm like what a gift to be able to actually appreciate the things that people miss in life and a lot of times people will see as annoyances.

Speaker 1: 1:13:11

I sure did. I mean I didn't like my sleep getting disturbed, you know, but originally. But then I was like, but I mean I remember don't get me wrong there were a few times I probably kicked my husband like, okay, it's your turn, I've done it 200 times so you can do it.

Speaker 1: 1:13:25

But before the most part, I was like no, I'll do it. I'll do it because I want to go see her, because I can, and I think that's just one of those ways to show that you can have good and bad, and like they can balance each other out. In a way, I have taken, let's see, well over an hour of your time. I have like there's so many more things that I would love to talk to you about, but I don't want to take too much more of your time. I would love to. I'm just going to go ahead and invite you on the podcast to come back again sometime.

Speaker 1: 1:13:57

I would love to talk to you guys in depth about your transplant story, your journey, and also I would love to honor and, you know, really shine a light on the life of not only Bella's donor, but all families and all donors who saved the lives of so many. I think that's such an important, incredible topic and I would love to have you back to speak to that, if I can get you to agree to it.

Speaker 3: 1:14:29

We should definitely do a part two, and I'll, I think, Bella's still. We had a late night knowing that we could sleep in this morning, so oh, okay, that's what I was saying.

Speaker 1: 1:14:38

I would love to see her, but maybe we can schedule a time soon when it works for both of you and we'll let her get her.

Speaker 3: 1:14:44

I would love that.

Speaker 1: 1:14:45

She doesn't need beauty sleep, she's gorgeous. But yeah, yeah, I would love that for sure. I cannot wait to meet her.

Speaker 1: 1:14:52

But, kyla, thank you so so much. I've learned so much from you and I really am inspired by your selflessness and your self-awareness too. That takes a lot of, you know. Sometimes I foo-pa the word strength, but it does. It takes strength to be willing to really look inside yourself and make the choice to do things differently when life is pounding you and making it really hard to do so. So thank you for the example you set. Thank you for being an incredible advocate and such a voice of joy and passion and spreading bravery and encouragement, and really you're just changing the world, and so thank you for digging in and making that a part of your life's mission. We all benefit for it.

Speaker 3: 1:15:47

Oh, thank you, that means a lot, that means.

Speaker 1: 1:15:50

You're very welcome. That helps you. All heard it. She said she's coming back. It's the light cannot wait yes definitely.

Speaker 3: 1:15:56

I would love to very much.

Speaker 1: 1:15:58

Yes, wonderful, all right. Thanks everybody for listening. I know you're as touched by this as I am and if you could, please, please, please, help us share this episode with as many people as possible, because people need to hear Kyla and Bella's story and, once again, everybody knows somebody. So even if you think you don't know anybody who's been affected by this, I guarantee you do so. The more we share it, the more we increase the chance of the people who really need to hear this actually hearing it. So, thank you everyone, have a great day, bye, bye.

Speaker 2: 1:16:35

You are capable, you are equipped and you are not alone.

Speaker 1: 1:16:39

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.

Speaker 2: 1:16:47

We would also love to learn about your personal journey and how we can support you.

Speaker 1: 1:16:51

Reach out to us at contact at charlottehopefoundationorg.

Speaker 2: 1:16:56

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