Overcoming Isolation in a Digital World with Callista Bowes

This conversation with Callista Bowes, a therapist, mom, and certified pediatric gentle sleep coach, dives into a reality many special needs parents face—the deep isolation that exists even in a hyper-connected world.

We talk about how social media can create a false sense of connection while leaving parents feeling even more alone. Callista shares her experience navigating loneliness after stepping away from her career following her daughter’s Down Syndrome diagnosis, the struggle to find truly understanding spaces online, and why building in-person support can feel so hard. We also explore the emotional toll of managing constant responsibilities and the fear of judgment that keeps many parents from opening up. If you’ve ever felt unseen or like digital spaces don’t quite meet your needs, this episode is for you.

Books Mentioned:

As Long As You Need: Permission to Grieve by J.S. Park

The Wild Edge of Sorrow. by Francis Weller

Connect with Our Guest, Callista Bowes: 

email: callistabowes@gmail.com

website: A Cherished Night of Sleep

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

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Transcript

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. Well, happy Downs Syndrome Day. Actually, I think it's called World's Downs Syndrome Day, which is not today. That you're listening to this, but it is March 21st, which is when I'm recording. So I know it doesn't really apply, but you know, I didn't want to go past without acknowledging the day. I want you to delightfully anticipate the conversation to come. It's a super rich conversation, and our guest today is KSA Bose, and you are gonna hear all the details about who she is in the episode. So I'm not gonna double the peer and say it all now. But what I will say is that I think Khalisa does such an incredible job of letting us into her experience. She's articulated and looked back at her journey and her story, and she's telling us about it, and she's telling us about it in all the raw and real experiences that I think will very much relate to. And the result is that we get to see ourselves inside of her story. And then not feel alone. We talked about that in the episode, and so I'm very much anticipate that you are going to listen to kta and you're going to fall in love and be like, man, this lady's so cool. I wish she lived in my town. And just see the beauty of her becoming and her doing the work to get to where she is today. All right. Well that's a great launching pad to welcome kta to the show. Hello and welcome to the Special Needs Mom podcast. Well, happy Downs Syndrome Day. Actually, I think it's called Worlds Downs Syndrome Day, which is not today that you're listening to this, but it is March 21st, which is when I'm recording. So I know it doesn't really apply, but you know, I didn't want to go past without acknowledging the day. I want you to delightfully anticipate the conversation to come. It's a super rich conversation. Our guest today is Calisa Bose, and you are gonna hear all the details about who she is in the episode. So I'm not gonna double the peer and say it all now, but what I will say is that I think Calisa does such an incredible job of letting us into her experience. She's articulated and looked back at her journey and her story. And she's telling us about it, and she's telling us about it in all the raw and real experiences that I think will very much relate to. And the result is that we get to see ourselves inside of her story and then not feel alone. We talk about that in the episode and so I'm very much anticipate that you are going to listen to kta and you're going to fall in love and be like, man, this lady's so cool. I wish she lived in my town. And just see the beauty of her becoming and her doing the work to get to where she is today. All right. Well that's a great launching pad

Kara: 4:24

welcome to the Special Needs Mom podcast, Callista.

Callista: 4:28

Hello.

Kara: 4:29

I'm so glad you're here. This is gonna be so much fun. So, giving everyone a little bit of context, Callista and I, we have some history. We know each other. we have had the gift over in the Path of Peace community, of having her part of the community. So I begged her, I begged her, I chased after her. It took a lot of texts to

Callista: 4:49

It did take a lot of texting.

Kara: 4:51

I am glad I persisted because I think this is gonna be a really rich conversation, so welcome.

Callista: 4:56

Thank you. Yes, I, I kept thinking, Kara's just gonna give up on me if I don't eventually do this.

Kara: 5:02

No, I mean, I would clearly never wanna force anybody, but I knew you well enough to know that I, I, I knew it was, not necessarily that you didn't want to, but. you had to wait for the right time, which I

Callista: 5:12

Yes.

Kara: 5:13

Okay, so let's give people a little snapshot picture of who you are, where you live. I wish they could see you in your beautiful kitchen and a little day in your life. So tell me a little bit about, tell us a little bit about are.

Callista: 5:27

Okay. I'm Callista. I live in, a small town in southeast Florida, born and raised here, so I'm enjoying some, nice, cool weather for today. I've been married for 12 years to my husband, and I have two girls. One is nine years old. Her name is Penelope and the other one is six and a half. Her name is Adelina. And Adelina is my daughter with special needs. She was born with Down Syndrome. And a little bit more about me is that I come from, social work background. My, formal education was in, in social work and I worked in that field for quite some time. And then we made the decision after a big event in Adelina's first year of life for me to quit. And I've been a stay at home mom now for six. It's going, yeah, it's about six years now.'cause it would've been six years in May coming up here. and that was literally on the basis that I thought I was gonna go back to work in like 18 months. And somehow God has literally kept us going for six years. I. because we pretty much cut our income in half when I quit. And so, in that time though, I do have to mention in that time I did become certified to become a sleep coach, pediatric sleep coach, which has been a fun booster for me. Nothing that has quite become a full business yet, but I'm hoping one day will. And, trying to think of what else. I really, am excited to be here today just because I think with my social work background, just very big on people's journey and things that happen in life and how to make sure people live the best version of their life. And so to go through my own transformation of all that, I wanted to be able to share. So that's why I'm here today.

Kara: 7:12

Was it for Adelina or for Penelope that you were interested in sleep

Callista: 7:17

It was for Adelina, although I did, a type of sleep coaching for Penelope when she was younger, like eight months. I did like a quick read book and it worked really easily for her. She was very typical, but for Adelina, because of her health needs that, well, I'm sure we'll talk about, got to 18 months old and I was just really nervous on how to do it with her. And she had been, and, and she couldn't fall asleep on her own. And so no one was sleeping well. And I was like, well, I know there's a way to do this, but I did a ton of research trying to find out how to do with child with special needs, you know, just. And I found a program that worked really well for me and found the original designer of that program and found out you could become a certified sleep coach. I didn't use a coach, I used the online program. Um, but I was like, wow, I could like do this from home and I am a social worker and I love, it's like it was like a perfect background. so I was was like, let's just do it. Let's go for it. So it's been a few years and I've met a lot of great moms and people and families and it's. A lot of fun for me and it's ties into my special needs life as well, um, for a lot of reasons. So it's been, it's been interesting. Yeah. I like it.

Kara: 8:30

Okay, well let's make sure we promote you. in terms of everybody, I love that you that you needed a little bit more help Adelina because I think back to, Levi's diagnosis, he had a condition in which he pees a lot. and so night training him was. For, in my head, complicated.

Callista: 8:54

Mm-hmm.

Kara: 8:55

And, and so I found this program, I think it's hilarious still. It's called Thera P

Callista: 9:01

Oh, that's very creative. Oh, yes. I like, that. You have to have humor.

Kara: 9:07

You do. So it had a mat and there was a coaching program and there's this whole system and strategy. And it was very simple, but it was very highly structured and it was the exact, and honestly, like he was night trained in like, I think three weeks.

Callista: 9:22

Wow. That's great.

Kara: 9:23

a beautiful process. And, but I knew that I needed someone outside of my head.'cause in my head it was hard,

Callista: 9:30

Yes. Yeah.

Kara: 9:31

So anyhow, I just, I highlight that because, I think you having the context of having a daughter with different dynamic, gonna talk a little bit about her heart and, that part of her life. But, I love that you said, Hey, I need more help

Callista: 9:47

Mm-hmm.

Kara: 9:48

I know you're not alone, and so we'll have your contact information, in the show notes if

Callista: 9:53

Okay. Sounds great.

Kara: 9:54

and something I think is really cool about Callista is that she has zero presence the Internets no, in the social medias. And it's been a very intentional decision. And I tell her I'm like a little jealous. I'm like, I could do it myself, I guess. But also I think it's hard to go back, but I just think it's really cool that you've, supported yourself in that way.

Callista: 10:16

Yes. Yeah, I definitely, it's, it's a hard one though today because everybody's on it and the group that I was with and Kara know that one of my struggles is when I was in the group coaching program was how do I stay connected to a community? And the only way to do it these days is to be part of that. Usually. and so it's, it's still sometimes a war on how to stay connected to the people close to me with in the Down Syndrome community especially. but at the same time, I'm like, there's still no drive to get on Facebook or anything. now I don't even have it for my business, which I'm probably gonna have to change one day. We'll see. That's something I have to explore. but I do have a website, so I'm, I'm at least there.

Kara: 10:56

There you go. That's why I was like, it's not that you don't have the internet

Callista: 10:59

Right. It's that I don't yeah, I'm not on the social media part,

Kara: 11:02

but I look back, actually, I'm like, I think you were the. Push for us. So the platform that I used at the time I was, I was using a private Facebook

Callista: 11:10

right?

Kara: 11:12

helped push us to a different platform, which was infinitely better

Callista: 11:16

Oh, yay.

Kara: 11:17

I'm so thankful for you kind of being The

Callista: 11:21

Oh, good. Oh, good.

Kara: 11:22

involved from there. So, yeah. Thank you.

Callista: 11:25

You're welcome.

Kara: 11:26

Let's talk a little bit more about like the beginning, in

Callista: 11:28

Okay.

Kara: 11:29

so you, you know, you get this diagnosis. was she diagnosed before you

Callista: 11:33

in utero. So it was 20, like your 20, 22 week check with the doctor where you, you get the measurements for the baby. And my regular OB had sent me to a specialist because he's like, I was close to air quote, the advanced maternal age, and so he's just like, let's just to be safe. Check it out. I'm sure. Everything's gonna be fine. Literally, he said that to me and I went to this specialist, and my husband, it was the summer and my husband was a teacher at the time, so he actually got to go with me, which was exciting. And we were gonna find out the sex of the baby and get the measurements. And we had our names for boy and Girl and figure all that out. And we go through the process and they do the ultrasound and then you meet with the doctor and we get in with the doctor and he starts like pinpointing all these things and then is just like, this isn't a diagnosis.'cause obviously, and uterine diagnosis has to come from an amniocentesis, or I think one other way. And he was just like, but I think she has Down syndrome. And it was just like, whoa.

Kara: 12:38

It Just that moment where you're like, you're just like different

Callista: 12:44

Yeah. I mean, it was, yeah, I mean, here we are just getting excited to name her, not like what you know, and so I had to get some blood tests done. That was, you know, the, the genetic blood testing that then gives you a 99 point whatever percent. You know, you know, but it's not still, that's still not a diagnosis, that's just a, a guess basically. but between that coming out positive and the things that were showing up in the ultra on the ultrasound, it was like, no, this is, she definitely has Down syndrome. So that started a whole, lovely, obviously shock of our lives, which we had different reactions to. and only a few weeks later, I'm in an appointment.'cause now I'm seeing them regularly, of course on top of my OB and, and I'm not a very, I don't eat during pregnancies. I, I lose weight. So then there was a lot of concern'cause she was small. So now I had to add in some health food when I felt very sick. And, I'm not a very graceful pregnant person. We have learned,

Kara: 13:45

I'm just like picturing you like stuffing

Callista: 13:47

yeah, I mean, literally I was like every, I was, I had like a routine. There was like the muscle shake that I had to eat. I, I could only drink so much during the morning or else I was gonna be sick. I liked the only thing I cra was a bagel and cream cheese. And this is extreme, but it's a funny story. I liked Dunkin Donuts, bagels, and cream cheese and how they did it. So I mimic doing it at home with the wrapper and everything and I'd eat that on the way to work, after I dropped my daughter off at daycare. Yeah. So that was like my highlight of food. The rest of the day. I couldn't care less and I just shoved it in there.'cause I had to, hoping it wouldn't come out the other end. So, so that was very, it was very stressful because I was like, needing to gain weight. Now we have this diagnosis, then we go a few weeks in and they're like, something's wrong with the heart. And we're like, okay. But now I'm, now I'm in the beginning of survival mode because now I'm like taking things like. Total a type personality, social work like problem solve, head on. And they're like, here's the cardiologist we want you to go see. Go get a fetal echocardiogram done. Thank God the cardiologist we had has offices.'cause we live in a small town, we're not near a big hospital, so thankfully they do come to, to where I live and to two of the cities nearby. So. I get there not really knowing what to expect in this appointment on a Friday morning, early in the morning, but I get in there, love our cardiologist to death. He's, just, just gentle soul. Thank God I needed a gentle soul. I don't think I would've done well if he hadn't been at all. We go in and he stayed in part of the actual echocardiogram. His wife was the sonogram, and they're looking at the pictures as we're doing this, and I'm sitting there and then I leave the room and he comes out after he's kind of finished looking at everything and he comes out and he's like, okay, well she has what's called an atrial ventricular septal defect, which is when the septum is this, this the muscle that separates your heart from left to right. Had a hole in the ventricles, which is on the bottom, and the atrium, which is on the top. Although at the time they didn't really know fully if there's one in the atrium, but that did eventually come out. and the ventricle one, he said was so big she was gonna need surgery. It wasn't like, oh, it. might close up. By the time you have her. Oh, we can give her medicines. That's another option is there's medication that can be given when the baby's born and it might close up. Then there's surgery. And he was like flat out like, she's gonna have to have surgery before six months of life. It's like, okay, well then that is not the answer I was expecting. so that really like. I, the description I used my fir the first year of life with her was just horrible. Like, just you, you, don't, there was no like, let me enjoy my ba, my newborn baby And all of her softness and my, yes. My, my daughter was three and a half when I had the other one. Yes. So, so we just kind of moved ahead, picked the hospital, you know, and. You were just like on anticipation of when it's gonna have to happen because they want it to happen by six months because, and they want it to happen closer to six months because the heart is just enough bigger to do the surgery. they only do it before then if it's like extreme and needed. so at two months old. She was considered failure to thrive. We had went to the hospital that we were gonna have it at, thinking it was heart failure, thinking that it was, that she needed the surgery and that like her heart just wasn't functioning properly. And so for people to know when, this is called heart failure, when you have this defect, and what basically is happening is that. The blood that the heart would be fully pumping to your whole body and all the organ systems is not happening. So the heart and the brain, then brain basically, but the heart is then only pumping to essential organs, which is your brain and your lungs in order to live. And then the rest of your body will get some blood. But you're, you know, you already have low muscle tone with Down syndrome so that she was the floppy, floppy baby even more. Your digestive tract basically goes off kilter. And so like all these other systems just don't get to fully function. So what ended up happening is she was failure to thrive'cause she had horrific acid reflux. And we two months old, we're down in Miami Children's is where we had our stuff done, which is an amazing hospital. I'm just gonna put a plug in for them'cause they're awesome. and we left 10 days later, which I didn't know she was gonna, we thought we were getting surgery and it's failure to thrive two weeks stay. With a nose tube coming out with a nose tube for feeding and a very regimented feeding schedule. I chose to pump so I was pumping consistently. We were supplementing with, things they wanted in there for calorie purposes and keeping the food down purposes. She came out with like. Two more meds to add to the regimen we were already on. I'm literally felt like a nurse. I'm shoving the meds and nose tubes on a schedule of like, I think we were at like six meds. no one told me when we first came outta the hospital that I could set the pump so that it would just slowly feed her all night because she had to feed every three hours. So at the beginning I was wake, I was

Kara: 19:14

Like that no one told me.

Callista: 19:16

I, no one told me at the hospital. I found out from my GI when we went to that follow up. Thank God. And, that was a lifesaver, because I was pumping and then starting the pump and then the pump would end, and then you had to clean up from that. And then you were sleeping in between for like a half hour. It was a nightmare. but once we were able to learn how to do everything and then we were weighing her every night because the fear that she wouldn't gain the weight. And like, you know, and it is funny'cause I hear people now like, oh my gosh, my three month old is, you know, 12 pounds. I'm like, we were lucky that at six months she was 11 pounds. Like that was like amazing.

Kara: 19:57

where I have to put in the fact that I got jebb up having a baby because my third son came out that big. He was. He almost, he was 10 pounds, five ounces. Like this is

Callista: 20:07

You didn't get the baby infants.

Kara: 20:09

he was, when he was born. I was like, this is not fair. I was like, I didn't get a newborn. I got a three month old.

Callista: 20:14

Yeah. Yeah, definitely. That's funny. So at six months she had her surgery. I, I never thought I would say thank God for the failure of the Thrive stage because, but I'm, I thank God for, because then we knew how to manage the hospital. We knew what to bring with us, we knew where everything was at the hospital. We knew what food we liked. I was just telling that food is my husband and I favorite thing so. You know, we knew the, the staff, like we knew where to park. Like it actually set us up for that part of then the roller coaster of surgery.

Kara: 20:48

Mm-hmm.

Callista: 20:49

you know, and then in the middle, at the end of my daughter stay surgery, my other daughter. Turned four while she was still in the hospital. So we did go home for that, obviously. but my, nine oh 9-year-old remembered it as we almost didn't make it home, even though like there was an intention to be there. So to say, you know, that, I mean, that's just a whole nother topic is what this does to your whole family and the other siblings. So. Yeah. so get home, when you have a open, open heart surgery, you have then, as an infant, a six week recovery period because the sternum now needs to heal fully and no one can pick the baby up underneath the arms. So I had gone back to work at the time I was working in a substance abuse, residential program, and I had gone back to work at four months old. And then at six months old went to the surgery and then we thought I was gonna take. The six weeks off because then she needed to stay home from the, she was staying at a Ppac, which is a special, you know, daycare where you can deal with all the meds that she needed and the nose tube. and I was sitting there one day like, this child is never going to thrive if I send her back to this PE and I go back to work, like she'll be well taken care of at the Peck. They absolutely loved her. There is no doubt about that. She was safe. The amount of therapy. She was a seven month old. That was a newborn. I mean, we had to start over talking, started over, all major movements starting over. I mean, she couldn't sit up, you know, name it. You already are behind with Down Syndrome. But now we're like even more of a behind, basically. And the reason I quit was because our other daughter is in a private school and the priest, at our church happened to email me and say, you've been through a lot this year. We'd like to cover the rest of Penelope's tuition for next year.

Kara: 22:47

Oh

Callista: 22:48

And I called my, my husband called either on his lunch break when he got off and I was like, oh my gosh. father just offered this like we, this is the only reason I don't quit my job, is because we don't wanna then affect her schooling. We need to think about this. And so we did, and I quit and we had like eight months of savings for like cutting down our budget. And said, I'll go back to work when the money runs out. That's why I laugh,'cause of what I said, beginning and literally through family and friends and just community, like we have somehow survived and not been worse for the wear as far as actual living standards go, you know? So, Yeah.

Kara: 23:33

I think it's such a, I mean, I can look back and I'm like in certain times of our lives and I'm like, how did we even do that? And incredible to recognize like all the things that actually end up working.

Callista: 23:44

Right,

Kara: 23:45

always figure it out, but they end up

Callista: 23:47

No,

Kara: 23:48

Okay, so then you get stabilized. So you, you quit your job, you stay at home, you get stabilized. I'm sure that, well, I know that that process was quite a while,

Callista: 23:58

yeah. That was, that was several year process. Yes.

Kara: 24:01

several year process, which is very understandable, and point, you recognize you need a little bit more help. So do you remember actually, what had you like start thinking, oh, I might, I might call Kara and see what's going on over there.

Callista: 24:15

So I, I have always thought to myself, and although you were a different type of coach than what I thought I wanted, obviously you're what I needed, but through this process, there were so many. as a social worker's brain, going through this. And I, so I was very methodical about a lot of stuff. I am bewildered and angry at the lack of support, organized, I'm gonna say organized support there is for families to figure out how to do this. all the way from, I mean, angry. I mean, we've all been there with insurance companies. Even your managed care for your state. I mean, you could go back to Medicaid, Florida, Medicaid and pull out some of my recordings and just hear me like yelling at them, you know, in that first year, like, you know, and learning. Yeah. And just learn. Having to learn from a two hour phone call about just the inequity of things and why didn't someone tell me the sooner things and. Where's the resources that help you talk through this thing? And so I've always thought to myself like, there's gotta be like a coach out there that helps you problem solve decisions to make. Like I was just telling Kara, we have a test that we, that is being canceled for the third time. And it's a, it's a bigger test that a doctor is wanting done and we, we think needs to be done, but it's now canceled for the third time for no one else's reason. So we're wondering if she's even supposed to do it. But now I'm, we have this decision, do you go against your doctor or do you follow your guts? You know, and that's another topic. But those things like that, I was like, I wish there was a coach out there that just. I talked you through this stuff. So I had at one point done like the special needs coaching, you know, Google search and not really found anything that worked years ago. but I think I got to a point where I was, you know, she's, let's see, she would've been just turned five. Yeah, she would've just turned five. And I'm still in this place where I feel isolated. I have a great support system. I still feel isolated. anxiety still was very much ruling, you know, how I was feeling about a lot of things. Now granted, we obviously all went through Covid, so I went through Covid with everyone home, husband, both daughters. I became the therapist for my daughter. While the therapists were online, all of our therapies we kept and did virtually for even a year after things were done because we didn't wanna take her out not knowing what it would do For her diagnosis, just'cause they're lower muscle tone. They don't do well with upper respiratory. And so no one really knew what would happen. So we lived even more isolated because of that. Right. And a lot of, a lot of changes in our family from that. and a lot of, alterations in our lifestyle. So just being separated from what everyone else was doing was happening even more. Depression it was manageable, but it wasn't going away. And I am someone who does a lot of self work and I was doing a lot of work to keep myself floating and I was not thriving, as you say, on your pod, like you're thing on your podcast, like not at all thriving. We were participating in life. We slowly, surely were doing fun things as a family. Yes. Our intact family is very well connected. we have great supports. Our relationships have thrived, so I'm very fortunate that those things have been there. But I, I'm spending my days just doing things to take care of. It was like self-care and take care of avelina. Like those are the only two things I can do.

Kara: 27:59

And then still not feeling great,

Callista: 28:01

And then still not at my, yeah, my then knowing I could be better. Basically, and knowing that at some point I'm gonna have to be able to, like I say, I have my sleep coach and that has been fun and I have had clients, but it's not a full business. There's no way I could, it, it comes when I can handle it. People come when I can handle it and God knows when I can't handle it and he brings no one. Like, that's literally how that has worked for me. and I, my birthday was in January of the, of my birthday's in January. So I had my big I. 40th last year and I got a big party and I got enough money and I was like, what am I gonna do with this money? And I found Kara, and I was like, I know what I'm gonna do with my birthday money. And I called you and was like, let's do this. And so I joined in January, I think like mid-January, late January, something like that, and did the six month program. And that's how I.

Kara: 28:55

I forgot about, I remember you did tell me about your birthday money, and I think that is so cool that you

Callista: 29:01

And if you remember, I was thinking about spending it on, because one of my goals was to get back into the gym and I was thinking I was gonna do CrossFit, and that would've been like,'cause that's an, that's an investment. And so I was like, okay, if I put the money aside for this, I'll do it.'cause I would not take that out of our regular, you know, like what our budget is. And so, no, I chose you and I'm glad I did because I joined a gym since Kara and go. and regularly to one that is just a regular gym, and it's been great. So, and I wouldn't have done that if I hadn't gone through your program.

Kara: 29:32

Oh, amazing. Okay. Well, I think what could be really fun is looking at. Common themes that you recognize is kind of where you started because you were so generous and you kind of sent them to me ahead of time as you kind of, contemplated it and prepared for this conversation and I was like, oh my gosh. I think this speaks so, globally to what we all experience. So I loved that you wrote them down in such a like concrete way. So let's go through one at a time, and just tell us a little bit about your experience with it. And so let's start with one of the big ones. You had a lot of judgment that you weren't doing it right.

Callista: 30:16

Yes. Yeah. So you, you know, when you jump into this world of special needs. The first thing you start grasping to is what can you find online? What are other moms doing? and that's one of the reasons why I don't do social media, I'm just gonna plug that in there, is because I know myself and the reason I got off social media 10 years ago was that I was comparing my life to other people's and it was not healthy. And I was like, I cannot do this. This is not for me. This is not gonna go well. So, when I started looking and learning about other families and meeting other people, looking at stuff online, I was then questioning everything about like, well, am I doing it right? How come they did it this way? Well, should I be doing it that way? How is this person able to manage that schedule? How are they able to do that many therapies and go that many places? I refuse to go there. Is there that mean that's something wrong with me, that I don't wanna take my kid there, you know? I'm only doing this many, you know, just. Constant comparison and then, then constantly questioning myself of like, is this the right path to take for her? But knowing, from my own life experience that following your gut and doing what's right for your own situation is important. So I had this like war going on between the two, like like knowing the discipline side of me knew like, no, I need to follow what I know is best for me and my family and my daughter. But this other side was like. But am I missing out on something that I should be doing? And so it was just constant judgment that, somehow I'm missing basically, I guess, would be the theme. And that. And that it's gonna affect Alina somehow. It's gonna affect Adelina. They didn't do it the, right way.

Kara: 31:55

the cost is really, really high. So what about, the next one? It's harder for me I can't seem to get it together.

Callista: 32:05

That's another compa it, it those like go together'cause it's another comparison thing. I mean, I'm talking like. I'm lucky if I did my hair. I had like a mom and I still have a mom uniform, but it, it's varied a little bit better. But I had like a Mom uniform. I like got to a place where I'm like, I need v-necks that are like five. I have like three V-necks. My mom got me in three different colors with pants that were still like maternity pants because that was what was comfortable and I just rotated through things. So I never felt put together. And I felt like without feeling put together and being able to just do the basics for my family, somehow take care of myself, which I explained took too much time out of my day as it was then make sure I'm taking care of pen Adelina, excuse me. And of course my husband and Penelope in there as well. How is it that people look good when they're still going through this and how is it people that have businesses and they started businesses and they start nonprofits, or they have a fund or they do this or they're volunteering, or I'm lucky if I'm just making out a house to do something that isn't one of those other things I've already mentioned. And so I felt like there was something inherently wrong with me that I'm not as capable, I'm not able to like make this work. And even going into your, you know, people are gonna think, well, you did the sleep coaching. Yeah, I started the sleep coaching, but then it didn't take off like I thought it was going to take off. And now I say in hindsight, I. Right? Yes. At the beginning it was, something's wrong with me. I can't do this. How are other people to do these, stay at home businesses and be thriving with it and making money, and I'm lucky that I'm just paying the bills for the business, basically, you know, in hindsight, as I said, people came when they were supposed to, and it was all done the right the way it was supposed to, but at the time, that's not how I felt whatsoever. so it just felt like.

Kara: 34:00

I think this one, I'm so thankful that you shared it and you articulated so clearly because I think this is such a common one. And I think, even if I look at my own journey, this is one where I notice that those I am and then some variation if something's wrong with me, those seem to get loud. After a really difficult season, so I can look at like ours are, they're not always medical. but the medical ones seem to, to be a little bit longer a recovery process for me. so I look at kind of this pattern and those I am insufficient in some

Callista: 34:40

Mm-hmm.

Kara: 34:41

Start to get really loud and it's, part of trauma. So trauma changes the way our brains are. It changes actually how we think about ourselves. That's why I think it's so important for us to, one, talk about it like we are now, to get in there and do the work, to, to be able to recognize that there's nothing wrong with you,

Callista: 35:02

Mm-hmm. right?

Kara: 35:04

Us. There's

Callista: 35:04

Yes. Yes.

Kara: 35:06

Okay. What about this one? And they might all have some similarities, so you can articulate kind of your experience with it, assuming you should be able to rise above.

Callista: 35:16

Okay, so this one is a fun one. So I am, I said, I am an A type personality. I am. I'm driven. I'm not an outgoing driven like I'm out there doing, but I'm a very, whatever I'm doing, I'm very driven, very responsible. I'm an oldest child, so, you know, put those together. I'm a Capricorn if you're assigned person. So you put all that together and I'm someone who's just succeeded. And, it's not that I haven't had to work hard, but it comes and I succeed at what I put my mind to and I do it and I get it done and I rise above what any hardship I've had prior to Adelina. And then, you know, you get this child who's just like, well, and my, I think I throw my note, but I'm not sure my, a therapist that I've had on and off for many years now, and definitely had during the time of the diagnosis and the first years of Adelina's life. Said, you know, Adelina was really good for you because I just thought that I had control, like I'm doing it. The ego just was like in complete, you know, front seat territory. And so I hit an absolute brick wall when I had this child who was going to, she turned our world upside down and for the good and bad, And it has been, my husband and I talk about, it's called humble pie. Like it's just constantly humbling. But I am not taking the humility very gracefully. So that that's where that assuming I should be able to rise above I every notch down. And every time I get a little more humble, I still am wearing like somehow this thought that I am supposed to be able to rise above this. I do think a leather layer of my situation that some moms might be able to, get behind is that I quit my job and I became a stay at home mom in a generation that we thrive on knowing we can have a career as women and be a mom and be a wife, and. I always thought I would be a social worker and work not that I was ever against being a stay-at-home mom'cause I actually wanted to be one when my first daughter was born. But it, but it's funny to think, we thought financially we couldn't. so I was also waring with a societal thought that I'm not, somehow, I'm not thriving. Doing what society thinks I should be able to accomplish as a woman who can, is supposed to air quote, do it all. And so also really doing, I did a lot of work around that big time just letting go and recognizing that, you know, it doesn't all look the same at all.

Kara: 37:57

Mm-hmm. at all. Okay. What about. The dynamic of, you mentioned a little bit about control. So like, you know, our worlds get turned upside

Callista: 38:08

Mm-hmm.

Kara: 38:09

A lot of us come from this type A, we get things done, like there's no problem we can't solve, and then we get this problem that we actually can't solve. And mean to really touch children as problem,

Callista: 38:20

No, but I know what you mean. Yeah.

Kara: 38:21

brain, thinks about it is like,

Callista: 38:23

Mm-hmm. Mm-hmm.

Kara: 38:24

we're gonna be the. Strongest personal you've ever or whatever that might be. so talk a little bit about your experience with grasping for control.

Callista: 38:36

Yes. Okay. So I would say the, in the first year, grasping for Control was. Organizing in a very strict way. Everything I did about Adelina, we kept all of our food logs. I mean, I didn't need to log at that point'cause it looked exactly the same. It was the same formula with breast milk amount, time of day. And we were methodical, but I logged it anyways. I mean pages and pages of it. I would spend lots of time just kind of over analyzing everything to make sure I got it right. My stuff comes out in like little things. I, I sat on our couch a lot because I. She was on a nose tube, which you had to feed slowly. Then because she had acid reflux, she then had to stay sitting up for a while after, so that's an hour right there. Then she would fall asleep on me. Hence why we eventually needed sleep coaching. So then she was sleeping on me. If I got to put her down, that'd be great. Then I was pumping. And then you're looking at a chance to take a break and, and I had family that would come and help with some of this, but I mean, some of this, I was on my own at home. you chance to maybe go potty, maybe eat, maybe do one other thing that you didn't delegate to somebody else. And then I was sitting back on the couch and repeating that. So I spent a lot of time on my couch and I, I, have, a bookshelf. I didn't like the way it was organized, so I literally obsessed in my mind how I was gonna reorganize it. And I would like obsess over each row and then would go in and like when I had time, I would like reorganize it the way I wanted and then like sit down and look at it the next time and be like, okay, I'm satisfied. And then like I'd do the. Next row and like that is to this day, in the same pattern. another way that we did a lot of, not just me being my husband, you know, we kind of went into like, you go in survival. So like we went into protective mode and covid happened, like I said a little later. So the four of us stuck toge. We were a very tight knit little four group family. we still have done a lot with our exterior family and we've lived life. So I don't wanna give people the, you know, idea we have it, but. Our 9-year-old has not really gone off and done a lot without us, you know? there's a few people we allow her to do it with, but it's not a lot. And it's certain activities. There's certain activities we don't, and we've just got very controlling in that nature. I would say those are some ways, and then another way that as a good and bad control is that I have very curly hair for those, for everyone who won't be able to see me. Thank you. and I, I still at 30 something years old, didn't know how to fully manage it, and late at night when I'd be holding her and feeding her, doing whatever, she wasn't sleeping well. I learned how to do my hair, so I became like a curly girl fanatic. Have like been on a six year journey of like products and styling and doing all this stuff and it's a hobby now, but at the time it kind of took him a lot of time. It was very like controlling about when I would do my hair and how I would do it. So it's, you know, one of those lighthearted ones, but yet another area that I just was like zeroing in. Like what can I control in my life that I can do something about is mine to mine to manipulate.

Kara: 41:48

Yes. Well, thank you for taking us on that journey. I want to kind of look now at. Because I know that you, visit those places, I think we all do. And there anymore. And so I wanna hear a little bit about the things that you've identified that were the pieces that have helped you. I.

Callista: 42:10

Okay. So first I wanna say kind of recap why even sought this stuff to help me, but I. Through all of this, there was just a lot of, and I know I've said the one word isolated, but I'm gonna say it again. There was a lot of isolation. There was a lot of feelings of anxiety. There was a lot of feelings of depression. There was a lot of feelings of anger, We, we talked about that. there was a feeling in there that I didn't know what to call until after Kara's group, which was grief. so what helped was number one. I do come by understanding the mental health world naturally because of my background. That's in my social work degree. Mental health was my area, so I engaged in therapy. I did have a therapist that I had worked with before Adeline was ever born for anxiety and working on that type of thing. So as someone who already knew me well, so I, I kind of really lucked out with that. So she walked this journey with me and I used her as needed. Sometimes they were intense. Since sometimes I barely saw her, it just depended. But then I also, engaged in specific types of therapy. I did work with EMDR, and I did work with something called RRT, which is similar concept both or trauma based, because I started realizing how much of this. Even though we were out of the two, the first two to three year survival mode, my body and mind were still working on survival mode. So when we get into year four and five, that's when I started realizing. Something's wrong. Like I can't keep acting like we're always in survival mode, even though that is needed at times still.'cause we still, we have our ups and downs obviously. so therapy and specific types of therapy were one. another was just learning basic self-care, like learning what self-care meant to me and what made me just feel. Grounded and calm and those are little things that don't cost much money because we don't, obviously I said budgets in half, so it could be, you know, wearing my PJ's all day'cause I felt like it and I could,'cause I'm home all day with her, or, you know, having a certain food or a certain coffee at a certain time or food items or. A movie here and there to just make me laugh or cry or you know, just what are those basic self care things. Having a robe that's comfortable, that one's silly, but it's so true. So self care. another thing for me is I was born and raised within the Catholic Church and it has been something near and dear for me. I have never strayed from it. It has brought me through a lot of different things. and so my relationship with God is very important, and so it wasn't foreign to me that prayer was gonna be important, and that honestly got. Exponentially ramped up in having my daughter. in fact, my, aunt and uncle supplied me with a prayer journal from somebody that I started using a few years ago, and that really helped me to kind of make it my thing. And that's evolved with lots of spiritual books and research and following the Bible or following a book. And every time I pick something up, it's what I need to hear. So that has been a very big healing part of my journey. then stepping out and being in your group was a big thing. I know. I remember telling you I'm a very, even though I'm doing this podcast, a very private person, really, hence another reason why I'm not on social media. and so to talk to a group was like, I knew I needed to do that because it's not something comfortable, because I knew I was gonna be vulnerable and I don't like being vulnerable. I wanna seem like I'm the person who can handle it. We already know that theme. And so it has its stages, there's modes in different times for different reasons that I did my best. During all of it. I think in the end, my A type discipline personality is what helped us survive the hospital in that first year. and I think learning about the trauma and realizing how much that did affect me was really big. And doing work, or not just knowing it, but then like I said, doing the RRT and the EMDR really helped. But the more recent, as I was ending your group, you were doing the grief. Podcasts and I bought all three of your books that you recommended, and I haven't read them all, obviously, but I did dip into one and that one really helped me in this fall when I had hit my own health challenge. but realizing that now I'm, I was gonna have a blank here. It's the, the pastor or the, the hospital chaplain? Yes.

Kara: 46:41

think of the name. I can picture exactly what you're talking about. We'll put it in. is,

Callista: 46:45

is. it the edge of sorrow

Kara: 46:47

No,

Callista: 46:47

that the other? No, that's the other one.

Kara: 46:50

it is the, take as long as you need or something. So we'll put the name of the book in the, in the show

Callista: 46:56

That one, and I didn't need to read the whole one because it does not all parts. That's what I really liked about the book, is I could pick the chapters that I knew related to me, and the biggest one was the loss of what the dreams were. So like I think in the end. Doing that grief work through that book and through my prayers and like my other prayer book and the scripture, I was reading like everything aligned exactly like I needed it to, and I did a lot of crying and my, the, I saw my therapist and my therapist was like, you need to start. Writing this stuff down and I actually started writing poems about it all. and that really led into just realizing like, I am allowed to feel grief about it because there was guilt about feeling grief, like somehow, because she's amazing and my family's amazing, and I wouldn't trade this life now for going backwards. I wouldn't, even though we still have a lot of hard years ahead of us and a lot of unknowns in front of us. I wouldn't trade any of that, but it was hard and it is sad and learning that it's okay that I have grief about that, and I feel sad about those things, but that I can also be happy about who she is and who we've become and our journey and find joy and the little things we've created as a family and know that we're at a place where we are thriving and living all of us, you know. I think is what really has helped me come to a better place. with that, I, I. At the time, the grief did open up so much at the time that I hit a health issue in the fall, and it was my first health issue. And I was not happy about the fact that I actually ended up with a health issue. I mean, I know, and I think I read something from you or somebody else after about how it's like inevitable and I was like, you know, I just thought it'd be that person who it wasn't inevitable. and with work with my therapist, I ended up going on an antidepressant because. I've done everything I could and I wasn't stabilizing, it was just all hitting really hard. And, it was definitely the best decision because I don't think I would, I mean, I immediately started feeling much better. And it's not to say one of my concerns, was, because I just got out of your group where I was supposed to be feeling my feelings more because apparently I was really good at shutting them down, even though I've done. Like 12 years of working with people and telling them to feel their feelings as a therapist.

Kara: 49:29

people that know you're supposed to have are the

Callista: 49:31

Right. I wasn't doing it for of myself. And that is one of the biggest things I got outta Kara's group was like, okay, so I'm supposed to really feel my feelings. So, was afraid that the antidepressant was gonna cover that up, and I was like, I'm supposed to be feeling my feelings not covering them up, but I still very much feel my feelings. They're just manageable and not like I'm crying and I can't stop uncontrollable. So, um.

Kara: 49:55

what an example. I love you and I love who you are, and I love the way that you. Have met your needs through all of the things, through your faith and like, through community, through different resources, therapy and coaching and reading, and you've done it on a budget. And so I just think you're such a great example because there's. So many reasons that you could have not, there's so many reasons, right? You could have gone and gotten something else with your birthday money, um, and you chose not to.

Callista: 50:32

Mm-hmm.

Kara: 50:33

the, in my opinion, the investment in you was so worth it.

Callista: 50:37

Yeah.

Kara: 50:37

that, like you, you know, getting here to smile today and be pretty incredible. And Yep. We're, there's still some things I don't it, and it's actually incredible and I love it. And, and we're thriving as a is incredible. So I'm just so thankful that, that we got to know each other that you gifted me the experience of, of coming alongside you.

Callista: 51:00

No, I, I'm so happy you do this. I mean, I really like, I. I taught, I'll be like, Kara. And people were like, who's Kara? I'm like my life coach that I saw for six months. Didn't you know that? Like, geez, weren't you listening? I mean, it is just the fact that you have this and this podcast has been huge. I mean, listening. To things that I needed to hear at the right time knowing. And I think the biggest thing is knowing, and we all said it in the group I was in, knowing we weren't alone and that all of our situations look drastically different. And I wasn't comparing myself and saying like, my situation's less worse than theirs. I should be getting it better because there you have a job. And their situations where I wasn't saying that, it just was like complete acceptance of where we were all at. and I needed that. That's what I, I needed that concept. Big time and that kind of helped me make me feel even more happy to be part of the special needs community, if that makes sense.

Kara: 51:56

totally. there's

Callista: 51:57

Yeah. Yes.

Kara: 51:59

amazing. Okay, well I know that you have to rush off to an so we have to make sure we wrap up here. So as we do wrap up, is there anything else, like in terms of like anything that you just know, like that, that is on your mind lately that you've learned that you just wanna share as we wrap up this conversation?

Callista: 52:16

I think the biggest thing I would say is if people feel like they're alone and there isn't anybody, there is somebody, and it may be a very unlikely person, I. At the beginning would call out to random strangers within the Down Syndrome community. I didn't fully know and like blab out stuff so that I could just talk to someone. And people have done that to me as they've come on to the community, even if it's that, but I. Talk to someone, anyone to be vulnerable because it opens the conversation up for you to really see yourself for where you're at. Because I remember opening up to my best friends who have known my entire life, and they knew this was hard, but I never really gave them always the biggest picture. Now they get it all and they're like, yeah, I don't know why you're hiding that. Like, I don't even know why you're holding back, like how we don't know how you do this. How are you doing this? Like it's a mystery. And that felt good because it was like, okay, wow. People actually are impressed by what I'm doing, even if I'm not, you know? So I think just talking to someone to get the feedback that you are doing an amazing job where you're at right now will help you get started.

Kara: 53:22

Mm. Beautiful. All right, well, you so much coming on, for sharing your story, for being you, and have a great rest of the day, we'll see you all on the next episode.