Sleep Masks, Seizures & Shifting Seasons with Brooke Turbyfill

This week, I’m joined by my friend and fellow writer, Brooke Turbyfill. We met as co-authors of The Courage to Raise, a book written by moms navigating the special needs parenting journey—and somewhere between that and a road trip in an electric blue rental car, we became fast friends.

Brooke shares what it was like entering the special needs world later in parenting, with both of her teens receiving epilepsy diagnoses. We talk about the challenges of finding community, honoring our kids’ privacy while needing support ourselves, and why it’s okay to change what we need in different seasons.

Also in this episode:

• A hilarious hotel sleep setup reveal
• A serendipitous lunch detour that landed us at Clemson LIFE
• How structured writing helped us both process and connect

If you’ve ever felt late to the “club” or unsure where you belong, this one’s for you.

📚 Episode Resources:

• The Courage to Raise 
• Clemson LIFE Program  
• Mend Coffee & Goods 
• Turbo Words Editing 
• On Stories Substack

Get The Special Needs Mom Survival Pack HERE

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Transcript

Kara: 0:05

Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome. Hello and welcome to the Special Needs Mom podcast. I just got done recording an episode with my friend Brooke Toby. Phil. And we're new friends. We just met because we were part of a collaborative book project together, and we're gonna talk all about that in the episode so you can check it out. Alright. Let me tell you a little bit more about Brooke. Brooke owns Turbo Words editing, where she helps authors, magazines, busy professionals, and ministry leaders craft and publish their best words. I love that. Even that I'm like, those are good words. Their best words. I wanna publish my best words. Okay. She also writes for a variety of publications on topics such as family, community, life, mental health, and spiritual formation. Her latest collaboration was as a contributing writer for the courage to raise a compilation book that encourages parents who have children with special needs. Brooke and I won't go in to her. Children's specific diagnosis is a ton it. It does come up a little bit, but you'll hear in the episode that one of the aspects that Brooke is navigating is honoring her own needs and the needs and requests for privacy from her children. And some of you will very much relate to that, and some of you not at all because maybe your child's not able to advocate for them wanting privacy. But I think. Regardless actually, of our children's ability to communicate. I think that. What we share and how we share it is a topic that I think is important to consider and also hard to navigate because how do we share our own stories without also sharing the stories of our children? And so let's get in the episode. We have a couple fun stories to share about our time together or about my time together with her in South Carolina and North Carolina. All right, let's welcome to the show. I. Hello, my friend Brooke. Welcome to the Special Needs Mom podcast. Hello. Thank you for having me. I was thinking, okay, so this is our second time recording together because combination of issues with the first one. But I was thinking, well, you know what? We had both desired to stay in touch and so look at us. Look at us. We're already doing it. We're doing great. And with that, let's tell everybody a little bit more about you and I'll mention we are. Co-authors? Yes. Of the latest and greatest. Actually, it's not the latest book from our publisher, hope. Hope Books, or Hope Publishing. What's it called? I think it's Hope Books Publishing. Actually. Hope Books. Hope Books Publishing. Okay. I almost had it right. I actually have the book right here'cause I, I dunno if you got your copies, but I got my copies in the meal. I did get my copies. Yes. It's called The Courage to Raise the Heart of Parenting, A Child With Special Needs. And so we were co-authors of this book together and we had the privilege of traveling together. Two moms in a car. Our electric blue rental car and we had a great time. So yeah, let's talk a little bit more about who you are, so Sure. Share, you know, snapshot of now, how you got here, all the goodies.

brooke: 4:20

Sure. I'm a mom of two teenagers, one who is 13 and one who just turned 17 last weekend. And happy. My husband. Yeah, my husband, you know, been married almost 20 years and yeah, we, our daughter. Was diagnosed at age well, she started showing signs around age seven, but she wasn't diagnosed till age 10 with a form of epilepsy called Sunflower Syndrome. And so that's kind of what led us into this special needs community. And then our son, a few years later also has epilepsy and was diagnosed with a different kind of epilepsy. So we have. A couple different

Kara: 5:01

things going on. You got a couple different things going on. Yeah. Yeah. And one of the things I think is interesting about your story or really kind of your arrival to the club of special needs moms is that I guess your, what we'll call a late bloomer. Mm-hmm. As in you had very typically developing. Well, I mean to, for the most part. You shared a little, you know, couple different aspects of stories with me that we won't necessarily get into today, but. Very much, you know, living a typical mom experience. Exactly. And, and your children were living typical children experiences. So, you know, I think straying from the pack of normal later in life, I think has its own challenges. What has that been like for you?

brooke: 5:49

Yes, it has been a little bit isolating. I will not lie, probably because our kids were close to and in. Teen years when we sort of jumped into this pool. And while they can both swim, if we're going with that metaphor, they don't necessarily have all the tools that you might want them to have. And like after sort of being raised, you know, in the special needs community, we're all kind of figuring it out in a how we can relate to each other. Well and honor. Each other? Well, I'm trying to honor their desires, but also meet my own needs in this process. So it's been a little bit bumpy of a road sometimes. Mm-hmm. And you know, our son, when he was young, he was diagnosed with sensory processing and A DHD. And so we sort of like had a lot to overcome with him early in life. And he worked super hard, did all the therapy. And a DHD is still something he very much has to cope with a lot. But we kind of felt like around the same time we started getting her diagnosis, we kind of felt like, okay, we're, we're landing in the land that everyone else lives in. Mm-hmm. And then that didn't last long. And I think we just, we didn't really have a lot of time to sort of process any of the things we ha had been going through as a family. Because during all of this in the background, we had a move and a home sale and switching schools and just a bunch of life that's hard on its own. And then you had all this in the background. Mm-hmm. So we didn't necessarily have time to go. We have a great special news community around us, and we are in this community. You know, it was a little bit like, oh, here we are.

Kara: 7:48

Well, and I think though. Okay. Thank you. So I think you articulated that so well. And I also think though, I mean, you and I had the opportunity to talk about even some of the language and, and how you arrived at actually identifying as a special needs mom.

brooke: 8:03

Mm-hmm.

Kara: 8:04

And you know, you told me a story about desiring something for you and your husband. You ended up talking to this woman. Tell me the story about this woman you talked to. Sure.

brooke: 8:14

Yeah. So. Last fall, my son had had several seizures and had been newly diagnosed, and we had already been through a lot with our daughter the last couple of years. And one day my husband and I were talking and we realized with every loud noise we would both jump, like it didn't matter where we were. And we kind of looked at each other and said, gosh, that that almost is a little bit like PTSD. Like we don't know for sure, but we feel like we're both really struggling. With just waiting for the shoe to drop, so to speak. Every other time we hear a noise, maybe we should get some help.

Kara: 8:53

I love that you're like watching each other like flinch. Yeah. Like literally you're like, Hmm.

brooke: 8:59

Yeah, because our kids weren't having this problem'cause they're the ones going through it. Right? We were the ones having to

Kara: 9:06

Totally

brooke: 9:06

having to help them. So we reached out to a local ministry that we knew did marriage retreat. And in the process of several emails back and forth, the woman said, I think you would fit into this marriage retreat that we run for parents of special needs. And I kind of sat there for a second and then I responded. Well, that's really great. Is there anyone else that it would go toward? That might fit the bill better or something to that effect, you know? And she said, no, I think you guys fit the bill just fine. And I think you would find like-minded parents here who are going through a lot of the same things you are. And that was really the first time I'd ever really envision myself in this community.

Kara: 9:57

I love the way that you retell that story. Well, but I think it's so important. And actually that's the reason why. Yeah, in spite of, I actually prefer the term, I say my son's disabled. I don't typically say my son. I, I say both, but I prefer the term disabled. He doesn't care. He has fond feelings about both, but it's the reason why I continue to use the name. The Special Needs Mom podcast is because I think it's the key that unlocks the most doors. Mm-hmm. And I think that, and that's, I mean, that's how people, moms find me. They think, oh, I think I'm a special needs mom. I, I'm gonna Google special needs mom stuff. They don't typically. Start with the word disability. Mm-hmm. I don't know what that is, but it is,

brooke: 10:44

I actually did Google special needs after that, that email exchange.

Kara: 10:47

Yeah. Interesting. And I think, and I, and I relate a lot to you, whereas our gateway to this life was cancer. So like, it wasn't like, oh, like you have this diagnosis that kind of puts you in this category. It was a little bit more slow going because honestly it took me quite a long time to actually recognize that we were gonna be permanently disabled. Mm-hmm. And also therefore, like kind of fit in this special needs world. It was a really, I mean, I, I go back to like the elementary school years and I, like, I did not know where I fit. And that's why this story I think of you. Having this woman generously say, Hey, I think this would be great for you. And I think the actual picture of you struggling with like, is that where I belong now? Right. And you know, I think you and I talked about. Like, it's not a club that any of us would be like, you know, I want that club. That looks fun, right? Oh, it's a club. We're like, no, not that one. Please it, God. Right? Take me from the club. And I say that, you know, loving the community that we're in and, and all of that, but I mean, not everybody feels this way, but if I could release my son from the burden of his disabilities, I would do so in a heartbeat. Yes. You know? Yeah. So it's, it's like loving where we are, but also acknowledging that it's, it's not an easy place to be. Mm-hmm. Okay. The other thing that I thought that I was like, you know what? We had a good chuckle over all of our sleep supplies and we forgot to mention that. Oh, that's right. In our first recording. And so I wanna lay the, I was like, we're gonna use this opportunity to entertain. So Brooke and I. We met up in Atlanta ish area in Georgia and drove through South Carolina up to North Carolina. Spent a couple nights there together to do all the things to celebrate the launch of our book together. And. So, you know, we're getting all set up in the hotel and getting acquainted'cause we had never met before and I don't know exactly how it came up. Maybe you remember more than me, but I was like, oh yeah, like I have quite a few like pieces of equipment like my sleep uniform that which includes, I can only imagine what I look like, which includes earplugs and hotels most of the time at home too. And in hotels, always hotels and hospitals. Sleep mask. Yeah, and the one that really tops it off is my mouth guard, which is about 15 years old and is definitely yellow, not white anymore, not clear. So yeah, I am ready. And so that's my equipment. What is your equipment?

brooke: 13:28

Yep, I have, I travel with special pillow. I also travel with a sound machine that I can only have at a certain volume on a certain setting. And is that it?

Kara: 13:41

Oh no, your back scratcher.

brooke: 13:43

Oh right, and I have a backgrounder. I forgot about that. That lives with me in the bed in case my back itches while I'm sleeping.

Kara: 13:52

That was my favorite part. And so I'm like looking at all of our stuff and thinking, this is hilarious. Let's lay out all of our equipment that these two middle aged women used to sleep. And I feel like, you know, our friends out there probably have a couple to add that they might use as well. And I, I don't know, I think it's pretty great. So, but we, yeah. Do people leave

brooke: 14:12

comments? Maybe they can leave comments

Kara: 14:13

on your show. That be, show that a good Yeah, actually people can text the show. So text the show, let us know your sleep equipment. But yeah, we were quite the pair. Mm-hmm. Getting our sleep, prioritizing our sleep. Okay. Let's see, what else do we wanna talk about? Should we talk about the story about our accidental happening onto the Clemson campus? Okay. Yeah. Where should we start? So we're driving. Go ahead.

brooke: 14:39

I was gonna say we were driving through Anderson. We were heading toward Anderson. That's right. Because that's where we were supposed to go.

Kara: 14:45

Yes, yes. Yep. So we stopped. Mm-hmm. At these places called Rest Stops, welcome centers, welcome center, or Rest stops. Okay. However you wanna call it. In the south we have welcome centers. Mm-hmm. We have rest stops in California, but they're not very friendly, I'll say that. Okay. Um, I mean, they're unmanned. They're basically like a nice, safe place to go to the bathroom, which is great. Okay. So. You know, Brooke and I had just met, it's like midday and ish, and we're like, you know, we need to eat lunch. So we found a spot, lovely lady in South Carolina, directed us toward a place. And we had our plan. And I like a plan. I like a plan, I like to know where I'm going when I'm driving. And so we were driving along, chatting and I miss the exit. Not a problem, right? But then you're like, oh yeah, just. There'll be a next exit, like in a second here, just look for it. And that did not happen. So we're like, okay, let's do plan B. And you were on the phone figuring this out. I'll let you tell the story about what, how you found. Yeah. So I was

brooke: 15:45

trying

Kara: 15:45

to

brooke: 15:45

find, I wanted to find a local place that was my goal.

Kara: 15:49

Yeah.

brooke: 15:51

And that had a variety of things and. I think the place, I always forget it, it was something Sisters, right? Delish Sisters. Delish Sisters was the name that popped up in my Google search and I thought, well, that sounds fun. I didn't even look at the menu, but I thought we should just go there. I

Kara: 16:08

know, I think it's funny. You forget the name and then that was the whole reason. You're like, I, I know like leader's, like I like this name. Let's go there. And I'm like, okay. And I'm like not looking at the map and I'm like, normally the type where I'm like, like, okay, let's see how far it is. And met, you know,'cause we were driving like quite a few hours to get to where we were going. But I'm like, you know what? We don't have anywhere to be like, we had the whole night, the whole day to get there. And so I'm like, let's do it. So we rechartered, we put it in the old map and I started driving and I, you know, we had Did you have any idea where like we were going?

brooke: 16:42

No, no, no. I'd never been, I mean, I'd been to Anderson, but we, there seemed to be no exits for a while after that. Yes. And so I just thought, well. This must be it. Like

Kara: 16:56

this is all we got

brooke: 16:57

until we reach North Carolina. I mean, this might be it. So. Yeah, I just thought, let's do it.

Kara: 17:02

So we're en route, we're driving and like, I don't know, I'm thinking this place is like looking really cute. Like I, you know, have not been to the south at all. And so I'm enjoying the drive and we're driving through Clemson and I'm like. Oh, I've heard of this place and I'm kind of like thinking, oh, this is fun. I get to see this place and it's pretty and all that. And we, you know, parked all the things. Get to this restaurant, delicious Sisters, which was so adorable. It was so adorable. Cute. I love that. Inside a hotel, the Shepherd Hotel. Yes. Inside a hotel. I can remember that for

brooke: 17:34

some reason.

Kara: 17:35

Yeah, no, it was like all of it together was just, I mean, eight plus plus. So we're eating, we're doing our thing. We're enjoying ourself and. I did notice that there was somebody working that I was like, oh, like it looks like that this is a place that employees, disabled people. I love that. This is great. And, but I didn't honestly like think too much about it. I. But interestingly enough, I had just come from a place called Mend Coffee, which is in Atlanta area, and it's, I don't know exactly the ill affiliation if it's that Catherine Wolf from Hope Hills owns it or is just affiliated. I, I, I don't know exactly, but it is, I think the best way to describe it is an interability place where. It is designed to be accessible to all people and therefore all people are there. And it was the most beautiful experience. I mean, I just stopped to get a coffee and kill some time, so I wasn't too early, although I was late to me and her husband, I just, you know, stopped. Hey, a friend had mentioned it from California and so I'm like, oh, this is perfect. So I stopped there and I was just filled with so much, like, isn't this incredible to see a place that was designed? Where all people can enjoy it. You know, whatever. People's disability didn't matter, but it was just, I don't know. I'm gonna say it was transformational, which I mean, sounds like a lot for a coffee shop, but I think if, if you knew the spirit of what it's like to be in a place that is designed and appreciates all people versus. Where people, oh, we have to make accommodations, so we will, it's just a very different attitude. And so I was coming from that, and so going into this lunch place, I'm thinking, oh my gosh, like these people from the south know how to do this whole like thing, right? And I'm thinking not too much of it. And so you and I. Again, in the spirit of not really in too big of a hurry, we're like wandering around the shop after we had finished eating and there was a couple things I think kept kind of tipping us off to be like, this place doesn't seem like the others. Like what was it for you that stood out? Yeah. And then I was looking and they had like coffee for sale and there was like unique artwork on each different coffee. And then on the back it said like, the artists were all intellectually disabled people from, I don't know where, but I was like, oh, well that's cool. And like, and it was one of those things where like I picked up on one thing and then it kept looking and, and then we're like, we're chatting. We're like, wait, we think that there's something different about this place. Different in a good way. And so we ended up talking to the. Marianne is her name.'cause we're now Instagram friends to Marianne who had helped us order our lunch and she had said when we had met her initially, oh, I moved here. You know, we were just making small talk. I moved here, you know, my son went to college here. But when we went back to talk to her again, we realized that her son was part of the Clemson life. Program and that he, I think he has Down syndrome and that that's kind of what brought her here. And so she was working at this cafe and this cafe employs people as part of a extended training period and affiliated with Clemson Life. And like basically it's also a place. That has created a place of belonging and support and all the things. And if you're not familiar with Clemson Life, I'm like semi-familiar with it. It's like a, essentially a, a college program for people with intellectual disabilities. And so it was just like, I don't know. I don't know why it felt so amazing, but I guess also you and I there as authors of this book and like just all of it coming together, together just felt so like God ordained in my opinion. She really was what a, what, a bright spot. So now I have very warm feelings about Clemson and, and that was a good lunch too. I really enjoyed it. Okay. Let's see. The other aspect of your story that I wanted to share,'cause I think it's, you said it really well as you were kind of describing yourself earlier, is honoring your children and also making sure you get what you need. And I think the aspect that you didn't particularly mention, mention is that that privacy is very important to one of your children in particular. And so you actually don't publicly share parts of their story and, and that you obviously like, you know, privately you share it. But how, I guess, you know. Maybe share a little bit what you would share about your experience and kind of where you find yourself. a friend had mentioned it from California and so I'm like, oh, this is perfect. So I stopped there and I was just filled with so much, like, this incredible to see a place that was designed? We're all people can enjoy it. You know, whatever. People's disability didn't matter, but it was just, I don't know. I'm gonna say it was transformational, which I mean, sounds like a lot for a coffee shop, but I think if you knew the spirit what it's like to be in a place that is designed and appreciates all people versus. Where people, oh, we have to make accommodations, so we will, it's just a very different attitude. so I was coming from that, and so going into this lunch place, I'm thinking, oh my gosh. Like these people from the south know how to do this whole like thing, right? And I'm thinking not too much of it. And so you and I. Again, in the spirit of not really in too big of a hurry, we're like wandering around, the shop after we had finished eating and there was a couple things I think kept kind of tipping us off to be like, this place is, doesn't seem

brooke: 23:15

I

Kara: 23:15

the

brooke: 23:15

started looking at their cookbook and on the back it said they donated their proceeds to. I can't remember if it was a supportive community of the special needs community. It was something real tied to the special needs community, and it just kind of struck me as, wow. Well that's a cool coincidence. I still didn't register anything other than that. And then I think you saw the coffee, right? You were looking at the coffee.

Kara: 23:43

Yeah. And then I was looking and they had like coffee for sale and there was like unique artwork on each different coffee. And then on the back it said like, the artists were all intellectually disabled people from, I don't know where, but like, oh, well that's cool. And like, and it was one of those things where like I picked up on one thing and then it kept looking and, and then we're like, we're chatting. We're like, wait, we think that there's something different about this place. Different in a good way. so we ended up talking to the. Marianne is her name.'cause we're now Instagram friends, to Marianne who had helped us, order our lunch. And she had said when we had met her initially, oh, I moved here. You know, we were just making small talk. I moved here. You know, my son went to college here. but when we. back to talk to her again. We realized that her son was part of the Clemson Life program and that he, I think he has Down syndrome and that that's kind of what brought her here. And so she was working at this cafe and this cafe employs people as part of a, extended training period and affiliated with Clemson Life. And like basically it's also a place. That has created a place of belonging and support and the things. And if you're not familiar with Clemson Life, I'm only semi-familiar with it. It's like a, essentially a college program for people with intellectual disabilities. And so it was just like, I don't know, I don't know why it felt so amazing,

brooke: 25:03

Mm-hmm.

Kara: 25:03

also you and I there as authors of this book and like, just all of it coming together,

brooke: 25:08

Mm-hmm.

Kara: 25:09

so

brooke: 25:09

No, definitely. Yeah. Maryanne was lovely too. Mm-hmm.

Kara: 25:13

She really was what, a bright spot. So now I have very warm feelings about Clemson and,

brooke: 25:18

It was good.

Kara: 25:19

and that was a good lunch too. I really enjoyed it. Let's see. the other aspect of your story that I wanted to share,'cause I think it's, you said it really well as you were, kind of describing yourself earlier, is honoring your children.

brooke: 25:36

Mm-hmm.

Kara: 25:37

Also making sure you get what you need. And I think the aspect that you didn't particularly mention, is that privacy is very important

brooke: 25:47

Mm-hmm.

Kara: 25:48

one of your children in particular. And so actually don't publicly share, parts of their story and, Obviously like, you know, privately you share it, but maybe share a little bit what you would share about

brooke: 26:05

Yeah.

Kara: 26:06

experience of where you

brooke: 26:07

I think that's been a difficult aspect for me in particular, which is interesting because, I am not a super outgoing person and so it wouldn't necessarily seem like something that would be hard for me to keep that part of, you know, our lives a little bit quieter. other than when we do have medical needs. And when we are struggling, it's nice to be able to say, Hey, we're over here a little bit struggling. and when you can't share the details, it makes it hard.

Kara: 26:41

Mayday Mayday.

brooke: 26:43

you know, it's funny because we have, you know, we've moved to a new town and so we have completely new. Everything, new church, new friends, new schools. Just if you could, you know, write a whole new story, it would just be, we started over basically, which was not our intent. we tried to kind of stay in our, in our little area where we had raised our kids and we're, both my husband and I grew up and we just could not afford the housing there anymore. So we ended up having to move a couple hours away. And in that process, you know, the supports we had in place where we didn't have to be quiet about everything are gone. So now that this teen hood has been reached and, there's a, some requests for a little more anonymity, I totally understand that. as somebody who went through some medical challenges as a teen myself. But, It does make it a little bit tricky as a parent to find your footing and to find people who get you. I definitely have some lovely friends here, definitely. don't get me wrong, but I'm not sure this part of our story anyone really gets,'cause there's only a couple of people that know even just a smidge of it. I don't think anyone here knows the entire story. Because I haven't felt free to share it. And, to be frank, nobody's asked either. So it's kind of like, okay. My husband and I we're on the same team. Yeah.

Kara: 28:17

Yeah, you got your husband and you and that's why I think, you know, and again, you know, you are still like relatively new to the club. We'll call it a club. so I think it's, you know, I. Figuring out, I think you're in the process, right, of

brooke: 28:34

Mm-hmm.

Kara: 28:35

how you do get the support that you need, like where, and finding those sacred spaces where you can share and disclose everything.'cause you know that it can, honor her request for privacy in a way that also, you know, gives you the opportunity

brooke: 28:47

and that's where like our friendship has. Been lovely for me. I mean, just even though we're not in the same area, just to have that trip timed so well, and to be able to be free with our story a little bit has been a blessing to me to just go, okay, it's all right to share the details of where we are. And it can be, you know, we're not in the same community, so it's a little bit easier because of that.

Kara: 29:16

Mm-hmm. I know that that's where, So I run the Path to Peace coaching community. And so it's designed to be a sacred space where we can share all the things, and I think not being part of one another's like immediate community, I think also kind of, it's almost like. You know, how, what are those people called that?

brooke: 29:36

Trolls.

Kara: 29:37

comments on social

brooke: 29:38

Trolls. Mm-hmm.

Kara: 29:38

Okay.

brooke: 29:39

Yeah.

Kara: 29:39

Well those are very negative. We don't wanna be trolls. but, but people are more brazen when it's like

brooke: 29:45

Mm-hmm.

Kara: 29:46

a keyboard and just typing down stuff. Right? So that's a negative example, but I think it also kind of goes to like there's a little bit of distance in terms of

brooke: 29:56

Mm-hmm.

Kara: 29:57

I'm not gonna see you tomorrow. You know, you're not gonna see me. Right. of being able to kind of like, let down and that, like let that guard down. I don't know. I think that there is like a, an

brooke: 30:06

Mm-hmm.

Kara: 30:07

that that actually works in our favor. You know, obviously both here, but you know, in the, in the group that I run

brooke: 30:13

Yeah.

Kara: 30:13

it's kind of cool, you know, kind of cool that like while being in person is like, I think, you know, number one preferred, there's other ways

brooke: 30:22

Sure.

Kara: 30:22

get what we need. okay. Switching gears a little bit. I was thinking since we have the second tense to record, I was like, you know, what was popping in my mind? What was the. When we were driving together,

brooke: 30:36

Mm-hmm.

Kara: 30:37

were driving, you're like, I had this other book idea and actually get, let's give a little backstory. So your professional, is in journalism, writing,

brooke: 30:45

Yes, all of those things.

Kara: 30:47

would describe it?

brooke: 30:48

I've worked as an editor and a writer most of my career. I've also done some ghost writing. Right now I own a business called Turbo Words Editing, and so that would imply that I only do editing, which is not true. I also do writing and ghost writing, and I consult with other people, like other writers. I have a little community on Substack called On Stories, and so I write to help other writers exhale a little more often than they sometimes do.

Kara: 31:19

I like that way as I'm like, oh, I need to excel right now. and you told me about a book idea that popped

brooke: 31:25

Ooh.

Kara: 31:25

when we were driving

brooke: 31:26

Was it a new book idea?

Kara: 31:28

Yeah, it was like, it was something, was like

brooke: 31:30

yes.

Kara: 31:31

and something,

brooke: 31:32

In fact, I,

Kara: 31:33

was like, oh, that sounds like a

brooke: 31:34

I know I wrote it down too.

Kara: 31:36

for a minute

brooke: 31:37

and I'm downstairs right now. But, I believe it had to do with championing women to. Own their needs and to, recognize that your needs change as you grow as a person and as you age.'cause I think sometimes we can

Kara: 31:54

Mm-hmm.

brooke: 31:55

so caught up in a season that we were in or that we have been in, and just keep trucking along as if that's still our season, if that makes sense. I think it was centered around that. It was a little more detail to it, but that's kind of the, the basic idea.

Kara: 32:14

I love it. I'd like for you to write that book. that'd be great. I was gonna say I can do the forward, but I'm like, oh, I think

brooke: 32:20

No, I'm not a, I'm not a big,

Kara: 32:23

So I mean, there offers there, but I, I think maybe we'll see who else we can get. no, I mean I feel like,

brooke: 32:29

Mm-hmm.

Kara: 32:30

a lot of seasons of parenting period and I think further complicated by, Aspects. You know, I think I can speak for myself and in the disability space or the special needs space because, I was okay with different levels. I think what I'm recognizing is that, I feel like we do get stuck in. What should work? Like, oh, well this used to work for me and now it doesn't. And then people, I won't point any fingers. It's me. start to go to the place of what's wrong with me? Why can't I do this? What's, you know, what's going on? start to make it mean things about us. Where in actuality

brooke: 33:13

Mm-hmm.

Kara: 33:14

mean that like our needs have changed. since it happens over time, I think sometimes we. I mean, I, I could say I could speak for myself. but obviously I think you resonate with it since you had the brilliant idea that, it's almost like the picture of that, you know, and boiling water, like,

brooke: 33:31

Yeah.

Kara: 33:32

that it's like cooked until it's too late. It's kind of that concept where it happens over time and,

brooke: 33:38

Yeah. And I think,

Kara: 33:39

a great idea.

brooke: 33:40

you know, when we can be empowered by a shift in our mindset. It just opens up a whole new lane for us that maybe we never saw ourselves heading down. But it's not necessarily a bad lane, it's just a new one.

Kara: 33:54

Well that, and I think also like,

brooke: 33:56

Mm-hmm.

Kara: 33:56

can get us over to that lane faster. it's almost like, I mean, not that speed is the thing here, but like I picture a freeway where like if we're stuck behind something,'cause we're like, well normally the Fast Lane works for me the place where I feel most comfortable. It's all, you know, I like to go the fastest, but let's say then we're behind that's going slow that. Rather than persist and be like, well, the fast lane's where I should be recognizing that we actually can and should move over to a different lane. Because at that time, given the nature of, in this case the freeway with my analogy, it's working better for us. And, and so I think a lot of times though, like, I mean, I, I see this all the time in. The work I do with women, is

brooke: 34:39

Mm-hmm.

Kara: 34:40

get stuck at what we think should be something versus accepting what actually is and

brooke: 34:46

Yeah. Yeah. I mean,

Kara: 34:48

we need

brooke: 34:48

even in our story, we've shifted multiple times from different school settings. I know you have to, And it's like each time it's like a, oh, I can embrace this new school set up for my child, because it's a new season that we're in. And also I think it helps you embrace, you know, like, yeah, with, to use your highway analogy, embrace any kind of bumps as you're shifting, you know, because I think sometimes when you don't recognize your season is changing and you keep trying to do the same thing over and over again, you're less compassionate towards yourself. And when you kind of go, oh, I'm shifting lanes here. If I hit a little bump in the process, that's probably to be expected, right? You can have a little more compassion for yourself and your family.

Kara: 35:37

I love when we keep going with a good analogy, so I, I love that that really works. But I think, oh my gosh, like so glad that you mentioned that aspect of we can have a little bit more compassion for ourselves because gosh

brooke: 35:50

Yeah.

Kara: 35:50

it,

brooke: 35:50

I don't know.

Kara: 35:51

why is that so hard? Why is that so hard? it's the thing I know intellectually and many of us knowing something

brooke: 36:02

Mm-hmm.

Kara: 36:03

it are two very different things. so it's constantly a thing that I'm, I'm intending to practice more. Let's talk a little bit. So we're on the topic of writing, and I do wanna mention like, you know, for people that are aspiring writers, there's a lot of us out there as special needs parents that feel like, Hey, we wanna share our story. And, so Brooke would be a great contact for you support you in that journey. but I wanna talk a little bit about what had you say yes to

brooke: 36:31

Mm-hmm. Yeah.

Kara: 36:32

together.

brooke: 36:33

well, I recognized that I was gonna be going through a shift in seasons myself. I do writing and editing and have that business, but I also was working as a communications director, and I knew that. job for me was ending'cause,'cause we moved and the book opportunity came along at the right time and I just thought, you know, this seems like we've kind of navigated this diagnosis for a few years now. It seems like a, a good time to share and, our daughter's form of epilepsy is something most of the doctors in our community had never heard of. And so I want to help people understand that this is out there, it's called Sunflower Syndrome, and that there is help, because even, even now I'm in some Facebook groups. I think we're one of the lucky ones, to be honest, that has a doctor in it that has heard of it. so many have no idea and they're getting misdiagnosed all the time and their, their children and their families are suffering for it. So that's the primary driver for me is I really wanna help other families have at least an idea of something to ask about. Yeah. Yeah.

Kara: 37:49

Mm-hmm. A place to start or even I think knowing that if you're having a similar experience where, Maybe doctors

brooke: 37:58

Yeah.

Kara: 37:58

what's going on. Like you're not alone. You know that this is, I think this community

brooke: 38:02

Mm-hmm.

Kara: 38:03

like that's a very common occurrence here, or that you find yourself as more of an expert in the topic than your doctor. Because, you know, we as mothers and, and fathers have In the nuances of our children

brooke: 38:16

Sure.

Kara: 38:16

and therefore know a little bit more about them than their doctors do in a lot of cases. So, what did you like about book, this particular writing process and being

brooke: 38:26

loved the structure. we were, our publisher gave us some great structure, so it was hard to get off track. I found,

Kara: 38:34

I, I did too. I like, I think it made me really enjoy the writing process, a

brooke: 38:37

Yeah.

Kara: 38:38

than I,

brooke: 38:38

and that's the funny thing to me is I'm not normally a super structured person. I be, I think because I've naturally kind of been a good writer, like, you know, you think about the things that you're good at, not a whole lot of things I'm really good at. And that's the one that's sort of been consistent throughout my life, like multiple times since I was young. People have said, oh, you kind of have a knack for writing. So it was never something I approached with like great scaffolding. I, I wasn't an outliner or a, you know, whenever you had to do those little brainstorm maps in school, I hated those. And so the fact that I loved this little structure that gave us, it was very simple. and maybe that's what it was, is just, it was super simple. you know, kind of, here's where we want you to land, here's where we want to start. And it gave us enough flexibility in the middle to sort of tell our stories. I really appreciated that, you know, just a little bit of guidance. I loved that. it was a very easy process for me, which was refreshing.'cause writing is, you know, not always easy.

Kara: 39:43

What do you think you personally got out of doing

brooke: 39:45

Hmm. That's a good question. Well, honestly, meeting all the other authors was. F like, great for me. it just kind of widened my community a little bit more. Learning about your online community. you know, I think that was the other bonus for me other than sharing so that hopefully to benefit other parents that are in our situation. The other bonus for me was just getting to get my feet wet a little bit deeper in this special needs community.

Kara: 40:13

Mm-hmm. A hundred percent. And that's what had me say yes. I think I said it in a previous episode, that for me, I come actually to writing as like, from the opposite perspective as you. I struggled with writing. I struggled all those areas of school. I started college in like a remedial

brooke: 40:28

You wouldn't know that.

Kara: 40:30

took of a something next. Kill your ego and Yeah, I did math and reading actually, or writing. I can, I'm a success story. Look at me how far I've come. No, I, I actually joke with my community that, making typos and smelling errors is part of my brand.

brooke: 40:49

Yeah.

Kara: 40:50

Can we do that? Does that, it's not that I'm sloppy, it's just that, that's how I am. it's part of my brand. See, I've embraced it and accepted it, and learned to love that part of me.

brooke: 41:01

you enjoyed the book and writing and all that.

Kara: 41:03

that writing? Okay. So yeah, so I, so opposite in terms of writing is not easy for me. It's not why I said yes. it's the, wanting to tap into, this new area of community. I also I had a sense it would be a little bit more regional, like not from close to where I live, that I was like, I wanna spread my wings a little bit and go, do something

brooke: 41:29

Yeah, me too.

Kara: 41:29

And I'm so glad I did. So well, Brooke and I very much hope that you guys will consider picking up a copy of the Courage to Raise. It's available on Amazon

brooke: 41:40

Yeah.

Kara: 41:40

it's a nice, it's not like a really long book. I think that's really nice and it's very readable. Like each, chapter is written by a different author and I think we cover a pretty vast, of different disabilities and, So it's a book that definitely leans on our faith and how the faith, our faith, our Christian faith intersects with disability and special needs. but that it's not, I guess my fear in being a part of project like that is to have it. done so in a, everything's okay because God is good, kind of like ick factor. and I definitely don't think it had that at all. I feel like what I loved about it is I think that the moms that wrote along with us were very real about struggles that they had it relates to faith and who God is and who he isn't, and what it's like to make sense of, our Christian faith and children that, you know, I mean, I think you share in your story that you know, your, daughter is asked to, you know, for

brooke: 42:43

Mm-hmm.

Kara: 42:43

that the syndrome goes away and you, know, not necessarily being able to say,

brooke: 42:49

Mm-hmm.

Kara: 42:50

pray for that and see what happens. You know, like,

brooke: 42:53

Sure.

Kara: 42:53

are hard conversations to have with children, put it that way. anyhow, so that's a long way of saying, Grab a copy of the book and we hope you enjoy it. Grab one for a friend too. And is there anything, as we wrap up that you'd like to say close out?

brooke: 43:08

I think if people grab a copy of the book and look through some of the stories or even just read some of the author bios, I think they'll see there's a variety of. F moms, they're, they're all moms except for one was a sibling, right? Of someone with special needs.

Kara: 43:24

Mm-hmm.

brooke: 43:25

that, like you said, they share kind of the, raw, authentic hero's journey where the hero doesn't always win in the way that you want at the end. and it's very story based. So even if you're. Just kind of needing a little break. It's not like a, a ton of medical stuff, you know? It's, it's very story based. So, and I, I think every chapter, even though it's very authentic in the struggle part, I also think you kind of walk away with a little bit of encouragement as well, wherever you land in your faith.

Kara: 43:59

Mm-hmm.

brooke: 44:00

I do think it's accessible to everybody, so, yeah.

Kara: 44:04

Mm-hmm. I think that's a great way of saying it. Yeah. All right.

brooke: 44:08

All right. Thanks.

Kara: 44:09

next time we meet Brooke. All right. We'll see you all in the next episode.