Take Heart

Loneliness and Isolation as a Special Needs Mom

• Amy J Brown, Carrie Holt and Sara Clime • Season 5 • Episode 173

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Amy, Sara, and Carrie explore the pervasive feelings of loneliness and isolation that special needs parents experience. They discuss how their past focus on efficiency led to prioritizing tasks over relationships. Now, years into their special needs parenting lives, they need intentional connection. They discuss their strategies for pushing past isolation and loneliness towards deeper friendships and finding their worth in the Lord. 

Join the conversation to learn how to nurture meaningful relationships and gracefully navigate the loneliness challenge.

Episode 173: November 5, 2024

Key Moments:
[1:44] Even 18 years later, I still feel unseen
[7:21] The loneliness of isolation prevents carefree time with friends
[19:15] Overwhelmed exhaustion keeps me from planning things
[20: 40] Being honest and continue to reach out
[24:49] Have a website to send to a friend who wants to understand
{28:56} Make an effort, especially to those who have been faithful to us

Resources:
https://www.amazon.com/Show-Up-Bring-Coffee-Disabled/dp/B0CFZKZGS8 


If you enjoyed the show:

Amy J. Brown (00:01.582)

People see us handle daily life really well. So it never occurred to them that we are sad, grieving, lonely, fill in the blank. And then, you know, that's what our book's about. like, we just handle everything so well. Well, I don't have a choice. 


Carrie M. Holt

Sometimes you just need somebody to say, I'm sorry, that's really hard. 


Sara Clime

Yeah. 


Carrie M. Holt

I need that. 


Sara Clime

Welcome to Take Heart, a podcast about creating space for connection, hope and joy as a mom to a child with disabilities or special needs.


We want you to feel connected and encouraged as we navigate this messy, emotional, joyful life together. Hi, I'm Sara Clime and I'm here with Amy Brown and Carrie Holt. Before we get started, we want to let you know at the end of this episode, we'll be sharing some changes you can expect here at Take Heart. So make sure to stay tuned to the end for that announcement. 


Today, you're listening to episode 173. We're talking about loneliness and isolation. In our book, The Other Side is Special, the first chapter is titled Loneliness to Connection. I want to come back here a bit. Personally, I love how that is the first chapter of our book because I think that being a disability or special needs mom can be extremely lonely and isolating. And I don't think there's anything anyone can do to really prepare for it. In fact, for me, I spent so much time at the beginning just trying to figure out TJ's diagnosis and everything that came with it - basically, I spent so much time focusing on the diagnosis itself - it was almost like isolation snuck up on me.


Like when I came up for air, so to speak, I realized I was on a much different journey than everyone else around me. It was really hard. 


So, I want to start with a pretty broad question. How has loneliness and isolation impacted you on your journey as a disability or special needs mom? 


Carrie M. Holt

I think for me, I guess I'm just surprised almost 18 years into the journey at how often it still just hits me. I had a situation this winter where we were at one of my son's basketball games and a lot of his games were in like smaller private schools and so they're not built accessible. They're old gyms. And I was sitting way at the end of the bleachers with Toby. And I just remember sitting there thinking, no one even sees me here. No one realizes how isolating this is.


Carrie M. Holt (02:24.588)

And I was kind of having a little pity party for myself, to be honest, just, you know, and then.


Sara Clime

We used to do that at soccer games though, because you have to sit in that one spot where the one wheelchair that's allowed to go to the game has to be. 


Carrie M. Holt

I know. It's just, you know, and our world just isn't designed still even for people who can't walk. I just, yeah, I think it's just an afterthought. A lot of times it's not the thought that people think of, think, okay, I'm gonna build this new building, it's gonna be completely inclusive. And yeah, so I'm just surprised, I think, at how often it still comes up and how I struggle with not being seen. 


Amy J. Brown

It's funny, you guys should say a sports analogy, because as you were talking, I was thinking about showing up to events at school or at a soccer game. And for us, because our kids have invisible disabilities, there's so much judgment and shame.


And also kids with attachment sort of lie about their parents. So as you walk into a situation like that, nobody knows my kid has a disability. They just know they're the kid that's bullied at school, bullied their kid at school or whatever. So for me, I was even thinking about this just recently, one of my children finished, was on a team and all the moms know each other and I don't know any of them. And partly is my own response to years of being judged. So I'm thinking to myself when I go into a situation, what has been said about me? What has been said about my child? What has my own child said about me that's not true? So that loneliness goes really, really deep because you're in a shame spiral around it, which is so hard to get out of. 


There are so many ways I felt lonely. I just was thinking to myself, how do I love thee? Let me count the ways. That changed you. How am I lonely? Let me count the ways. I think forvmoms of kids with invisible disabilities and behavioral challenges, the loneliness is hard because of the judgment and the unhelpful, you just need to discipline the kid kind of thing. And that judgment, nothing, there's no moral value on your kids being in wheelchairs. Nobody's like, I can't believe that mom is letting that kid in a wheelchair. At least I don't think there is. I don't think that's your experience. 


Sara Clime

I actually don't. I thought it was the beginning because it's teaching. 


Amy J. Brown (04:53.002)

But there's so much moral judgment on our style of parenting, how we have to interact with our kids, that it's easier just to be doing on your own in some ways because I mean, it's not best for us, but in some ways I say, okay, well, no one's going to get it. So I'm just going to handle this on my own and not reach out to people. Because the other thing too is with the kind of disabilities and diagnosis, those are really private things with our kids. And you guys have private things with your kids, but their trauma doesn't need to be told to the judge lady at the grocery store. So there's always that balance too. So not only are you isolated, but you can't, you feel like you can't tell your story. 


Carrie M. Holt

Yeah. And I think too, you know, last month we kind of talked about the long haul and the permanency, you know, in the very beginning of diagnosis, at least for probably Sara and I, you know, there's all this help around you, you know, there's meals and then, you know, there's this. And then by the time Toby had his 40th surgery, there wasn't anybody left. I mean, there maybe was one person. There was usually one person, but it's just, it's not the same. You know, I remember going back a couple of years ago, I kept all the cards that people had given me, like right around the time of his birth, his surgeries, the two months we were in the hospital. You know, when they're 17, they're not cute anymore. We've talked about this, like no one's sending me cards. And the reality is, yeah, in some ways it's easier, but in some ways it's harder. And it's even more isolating, especially as you watch all the other families with their kids grow up and their kids become independent and do that normal release into society. And you know your child is not, your nest is not gonna look the same. You may not have an empty nest. And so I think it's just really hard because you feel like you're being left behind your child's entire life. And I'm sure you probably experienced that too, Amy. 


Amy J. Brown

Well, I also want to say that people see us handle daily life really well. So it never occurred to them that we are sad, grieving, lonely, fill in the blank about it. then, you know, that's what our book's about. like, we just handle everything so well. Well, I don't have a choice. 


Carrie M. Holt

Sometimes you just need somebody to say, I'm sorry, that's really hard. 


Sara Clime 

Yeah. 


Carrie M. Holt 

I need that. I see.


Sara Clime (07:19.072)

I see where it's hard. I think for me, the loneliness of isolation has impacted me that right now I don't have, I know I can't just meet up with friends. I have friends that will be more than happy like, “Hey, do want to go to lunch?,” knowing TJ will have to go with us and that's fine. And they are more than happy to have him go along with us and I appreciate that. But on the other hand, I want to be with my friend.


And I will not get out of caregiving and mom mode if he's there. It's just I won't have the ease of just sitting there and having a cup of coffee and “don't do that,” “stop.” Okay, you know, he's constantly, “How much longer? Are we almost done?” Like, not, that's not- Is that really a break for you? That's not connection. That's just being in the presence of somebody else. And so for me, that was what's difficult. 


And you know, you were talking about there's no shame in a wheelchair. I actually had a woman one time, because with TJ, for a long time, he looked like a typical child without a disability. So, we were at a department store, it was actually a grocery store, but we were going through, and you know how little kids, he was probably maybe eight, and he had a wheelchair, but he also liked to walk a lot. But we had the wheelchair because we knew eventually he would get tired. And you know, when you go shopping with like your neuro or physically typical children, they're in the cart, out of the cart, “Can I get in the cart? I want out of the cart. Can I walk? Can I do this?” And you're like, okay, I've been here an hour and a half, just sit in the cart! 


Carrie M. Holt

Right. You know, and so he wanted to be in that chair, out of the chair, in the chair, out of the chair, in the chair. And so I finally looked at him, I'm like, 
“Just sit in the wheelchair or don't.” And that is a typical mom response. Right? And I had a lady look at her daughter and, passively aggressively say, “It is a shame that somebody makes their child be physically disabled.”


Amy J. Brown

Oh my goodness. 


Sara Clime

Well, yeah. And that was one time where I looked at my oldest son. My oldest son was with me and his eyes got real big and he was like, I don't hear her. And I go, “I will meet you over by the toilet paper,” which was like three hours down. And the lady starts walking off and I go, “Excuse me. Excuse me, I need to say something.” And I wasn't saying it to her, I was saying it to the daughter. Cause the daughter was not going to carry that forward. Right. She was going to carry forward. She's going to carry the repercussions of it. So I've had this conversation with her.


Sara Clime (09:44.962)

And I remember thinking, I think it would be so much easier if he looked disabled. And that's where your, I think like invisible disability, his wasn't invisible. It just had manifested itself to the physical part yet. And I remember thinking, “Oh my gosh, okay, God, sorry. I'm not wishing that upon anybody,” but it was such an ice because it's a rare disease. And I didn't know anybody that I could talk to about that.


Is it normal to want him to look disabled? Or is it, you know, and people were surrounding us and everything, but day to day interactions make you feel lonely, lonely. 


Carrie M. Holt 

Yeah. 


Sara Clime

And people just don't get you, whether or not it's visible or invisible disabilities, people just won't get you. And then you add the shame of other people onto it or the shame of yourself. Cause we always pile that on. I think that's, you know, kind of going into how have you seen it changed over the years? Like for me, like I was just saying, as my son declines, it gets harder to get out of the house or, you know, we're constantly waiting for that next equipment to make life easier, but we can't say, well, he's going to stop walking one day. We don't know when that's going to be. Everything's different. So for us, it's just like, we have to wait for the inconvenience to be able to get the help from the government kind of thing. 


Carrie Holt 

Right. 


Sara Clime

That is, and he has to go with me all the time. I think last month I was talking about therapy. That was my one time and I was paying for somebody to talk to me, but it was my one time to really get everything out and have somebody pay attention to me and help me. Right. And not feel guilty about it, not feel shameful about it, not feel selfish. It was just, that was my time. And then he has to come with me and that's not gonna happen. So I just had to stop going. And so for me, the loneliness gets even, we're in a very big transition right now with us. 


Carrie Holt (12:09.705)

It's interesting because my husband and I have been leading a small group at our church and I had this vision of all these young parents are gonna come in that have younger kids to this small group and like the first several weeks, I looked around the room and it was all parents with teenagers or young adult children. And it just made me realize, first of all, sometimes in the younger years, it's too hard to, you know, church is too hard to, know, whatever it is, stay for two services, to make the time for that group, but you need it just as you need connection.


And it's just as lonely. I think, I don't wanna say lonelier, but I think it's just as hard, just as lonely as you start to project into the future of what your adult child's life is gonna look like. And you need the support just as much. And I didn't really realize it until that moment when I looked around the room and was all middle-aged parents with older teen or young adult children with disabilities and special needs.


Amy J. Brown

Yeah. Before I answer the question, I just want to go back to something. One of the very unique things of moms with kids with three active attachment disorder is the loneliness that they're the only person their child treats that way. Now your child may act out in public places, but because they can't attach to the safest person, the nurturing caregiver, you're their target. And I have to say I've had some loneliness over the years because the kids didn't treat David that way. And that's really hard. That's really hard. So if you're a mom and that, I just want to say I see that and that is a very unique place to be. But as they've grown older, I don't have kids in my house raging. They're kind of older, they're kind of out in the world. And I still have all that worry about what's going to happen. Are they going to be okay? I think for me, the thing that's changed specifically for the shame is I've had to had some mindset shifts and some changes in myself. I have a lot tougher skin. And I've learned to lean into my own confidence that I know what's going on with my kid. And what does that have to do with loneliness? Well, then I'm not shrinking back as much. And that's been a lot of spiritual work of my place as God's beloved and my place that I have loved well. I tell myself in the mirror, you are loving well. I tell my moms that I mentor, say to yourself in the mirror, you're loving well. 


Amy J. Brown (14:36.11)

And understanding that core value and that core truth has kind of helped me to open myself up to other people in a way that I don't think I had the confidence or the time to think about when they were younger. So if I was starting over, because, know, I don't want everybody to wait till they're mine, they're almost done with this, we're never done with the journey, to start thinking about this, but just, I want our listeners that have, especially kids with a disability, to remember, you're the expert on your kid. People don't know the whole story, but there it shouldn't stop you from being confident to reach out and connect.


Sara Clime

I was getting ready to cry, so I had to stop. Did you notice me pivot real quick? 


This makes me think, why is connection so hard for us, especially with moms? Like, why is it? I don't want to say it's more difficult for us than other people, but there are more obstacles and since it's long term, why is connection so hard? 


Carrie M. Holt

I feel like there's a lot of reasons. Sometimes I think it's the, at for me personally, it's the projection of how I think other people are perceiving me. And that's my own insecurities and my own, you know, just like my sitting off to the side at the end of the bleachers. In my mind, I'm thinking, no one sees us. No one even cares. Like just in my mind over and over, it's that negative talk of they judge us. They don't get what this is like.


And I mean, I think for me personally, you know, kind of like the conference that we were at this summer about beloved, we forget that our worth and our value doesn't come from other people. Say, think that our value comes from God, our child's value comes from God, they're created in the image of God. He loves us with his steadfast love. 


Carrie M. Holt (16:40.972)

And I think we have to stop projecting those negative thoughts onto other people and just be willing to open up to connection because I know we've talked about this, like when you have that closed fist of just kind of focused on yourself and no one gets this, no one understands this, you're not going to open up and be vulnerable or try to connect with somebody. And I think a lot of times we're expecting people to come to us and it's sad, it's hard, but a lot of times we have to be the ones to kind of open up our hands to other people. Thoughts?


Sara Clime

You know, my first thought is, honestly, I think, and I don't even know if it's a selfish thought, but my first thought was, I agree with everything you said. And at what point does someone else make the effort to step in and try to understand our life? 


Carrie M. Holt

Yeah. 


Sara Clime

Now, I'm not saying people don't, but that was my first thought. However right or wrong it is, you know, we don't have typical lives. So, I think connection is hard for me sometimes because my friends are now entering their empty nest period of life. I'll never have an empty nest, most likely, until I do. And that's a whole other set of grief. And while their child is finishing their first year of college, my son has hit his hundredth infusion.


You know, mean, the are very different. Or, you know, he had an assessment for a job and he was able to stay there for two hours. 


Carrie M. Holt

Yeah. 


Sara Clime

But they don't understand the hours upon hours upon hours of meetings that went into just for him to go help at a deli for two hours, you know? Like, and it's nothing I want them to understand, in a way. I'm glad that they don't understand it. I'm glad that their biggest worry is what is my child doing at college? That's a big worry. I had a child in college that is typical, but, and I hate that word too, but it's just not the same and it'll never be the same. And it's really hard for other people to relate. I think my point is, and I'm having a hard time articulating this, I just get tired of trying to make other people understand.


Sara Cime (19:00.162)

Or at least wanting it. And that's where the walls come up. So I agree. I mean, we need to have that open posture, those open hands instead of the closed fists. I think I've even said that before. 


Carrie M. Holt

But you do get tired of it. 


Sara Clime

But at what point? 


Carrie M. Holt

It's exhausting. 


Sara Clime

Yeah. Yeah. 


Carrie M. Holt

I agree. 


Sara Clime

When you're so busy holding on for dear life, you have to hold on with closed fists. And if I open them up, what's going to fall out? Like, I know that's kind of a really silly analogy, but I'm tired.


Like my tired is tired. And then my tired that is tired is just flat out exhausted. Like there's not, I wake up throughout the night. The idea of going out to dinner with a friend just seems lovely. But then the execution of that, of making sure everything falls in line, like I could just go lay down for 20 minutes and that's really what my body needs. So what is a, you know, we need this rest and we need this or we're in a season, but how long is the season? And that's where connection is hard for me is I think it's just, I'm exhausted and it's hard to relate when my child, my child's peers are doing very different things. 


Carrie M. Holt

And it can be hard too because I hear remember conversations with friends where they just kind of dismiss how hard it is and they don't realize they're dismissing it, but they are.


Sara Clime

Yes. And I don't know if they're dismissing as much as it's uncomfortable or they just don't understand. So they are dismissing it, but it's more out of a, have no idea what about it. 


Carrie M. Holt

I know the friends that I've had that see me and try to put themselves, you do have more empathetic personalities, right? I mean, I think we can all learn empathy, but I think some of us feel others' emotions maybe more than others. Those are the ones like I cling to, you know, like I hold on tight to because one of those times in the gym, I had a friend actually come see and sit with me and just said, “How are you?” And I said, “You know what, I'm not doing very well. This is really isolating and really hard and I'm having a party for myself right now.” 


Amy J. Brown

It's good that you could even say that. 


Carrie M. Holt

Yeah. 


Amy J. Brown

So I think a lot of times we're saying, “Fine, I’m fine.” 


Carrie M. Holt (21:29.08)

Yeah. And there was a, there was a relationship piece, relationship there that I felt comfortable saying that. But even then, think that connection is vulnerable. And it's hard to know who to be vulnerable with, or who's going to accept that vulnerability, or who might throw it back in your face, or just not get it. And then that can be hurtful. 


Sara Clime

This has nothing to do with any of it, other than I was talking to my sister recently, and she said, “Are you OK?” 


And I said, “No, I'm pissy. I don't know why. There's no reason for it. And I don't want to flippin’ a journal about it. don't want to reflect on it. I want to be pissy and I'm going to be pissy for four hours. And if anybody has a problem with it, don't talk to me.” 


And you know what? There was something genuinely okay about that. And I needed to go to bed and be pissy. And if you don't like it, please go away from me. Please leave me alone. That's actually preferable.


And I had to be okay with being that person. And I got up the next morning and I told myself before I went to bed, you are not apologizing for being pissy. You're not apologizing for not journaling about it or reflecting upon it or doing any kind of spiritual practice about it. I just said, “God, I'm upset and I'm mad and I'm just going to be this way for a while and I'll talk to you tomorrow about it.” And that's what I get. I think that's okay too. 


Amy J. Brown

Yeah. 


Sara Clime

That was just such a tangent.


Amy Brown

I was thinking, Carrie, what you said about being dismissed. It's really common in my arena of parenting that that's just normal teenage. Trust me, this is not normal teenage. 100 % trust me. When you guys were talking, I was thinking of a story that Sarah told me a long time ago. You guys were invited, you can correct me if I got the story wrong. You were invited to something, pool party something. And person's like, yeah, it's accessible.


It wasn't because they didn't know. And I was just thinking when you were talking like, okay, that's another level of something I have to explain when I'm already exhausted. In September, I interviewed Megan Amrich and she has a great book called, and I'm gonna not remember it, Show Up and Bring Coffee. It is super practical on how to help special needs parents, disability parents. So I really suggest that everybody get it. But one of the things she said, and it just so struck me that I would not have thought of, her child has a feeding tube and


Take Heart (23:57.07)

So he can only have, he can have some soft food. And it was a birthday party. And all the snacks and party favors he could have. Her friend researched before she asked her. I think I have this story right. And if I'm wrong, sorry, Megan, listen to the podcast. But I just remember thinking, wow. And one of the things Megan said was because we're saying all the words, maybe the people close in our life, we send them a website. This is what accessible means. Or, this is what reactive attachment looks like. Maybe that's the way we be open the door, not saying all the words first, that, somebody that we can trust, just, I'm gonna give you a website or an article, just so you can, so I don't have to say all the words, because sometimes I feel if I start saying the words, I will never stop talking. I just was so struck by that conversation, like, what a great friend, but Megan had to already establish the idea that I'm going to send you some information and have you read it first instead of me saying all the words. 


Sara Clime

Yeah. 


Amy J. Brown

That make sense? 


Sara Clime

Yeah, absolutely. My son's best friend, when he was first diagnosed, he went over for a play date. And like I said earlier, he was declining. So we had to tell everybody he has this and it won't show for, well, we have no idea. And I dropped him off for this play date. And for all intents and purposes, he was still that quote unquote, typical child, but now I had all these worries on it. So that was really the things that had changed. And her husband was outside working in the yard and she was inside and I was just gonna drop him off and it was gonna be a sleepover. She said, “Hey, do you have a little bit of time?” And she said, her husband was coming in and he came in through the door and she said, “Do you have a little bit of time? We want to know more about it [Duchenne].” 


She took the time at the very beginning. And everyone's know all of something's involved, she'll say, so our children went to homecoming together, just four boys. whenever she goes, “We're to have steak dinner. Can he cut?” She was like, “What do I need to know about it?” I didn't even expect her to know all the things, but I was like, depending on, you know, he might have difficulty cutting it. And she's like, “Okay, should I just go over and cut it for him? Should I ask him? Should I wait for him to ask for help? What's the best way to do that?”


Sara Clime (26:20.59)

And she's like, “I think I know, but so we talked through that.” And I, you know, if you're listening to this and you are wondering, how can I show up? You're not the special needs mom or special needs parent, but you're like a grandparent or a neighbor or a ministry leader. And you're thinking, how can I show up better for them? Just know we don't expect for you to have all the answers. We just expect for you to be willing to read the website and not go through the motions. If you have one of the questions. you do not, if you're not really that curious then don't ask. Like it could do more damage than good. And so I think sometimes we're just looking for that person to just show up and be willing to accept the website link or whatever. 


Because the instance you're talking about is we were invited for a pool party. I asked if it was accessible and I said, “Not the pool. Understand, you know, we can lift him in and out.” He was still smaller at that point.


But I said, “Is your house accessible?” And she said, yes. And it wasn't. There were three steps to get up in the house. And I don't fault her for that because she was thinking, I said, “Is your house accessible?” And she said, “Yes, it's all one floor.” I didn't ask, because I just thought, well, he's got to get into the house, in my head. She didn't do that. She was mortified, absolutely mortified. She cried because we could not get him into the house.


And well, he was younger at that point, so we could lift him, but now we wouldn't be able to. 


And I still think about that to this day. When people invite me, I'm always like, “Okay, so we need to talk about accessibility.”


“My house is all one level.” That's not what I was talking about. “Nope”. So what is the entrance? What is this? What's the door with the. I mean, it's like nobody. It's just difficult. And so it's by the time you get through thinking about it and you're like, well, my son's not a great driver, so he's going to tear into their doorframe trying to get into the bathroom, it's easier just not to go. 


Amy J. Brown 

Right. As we know, we're wired for connection. God made us so. I don't know. I wish we had 10 easy steps. Like, here's how you make a BFF for life. You always feel understood. That's unfortunately not life. But I wish we have to keep trying. 


Sara Clime

Yeah. So along those lines, how are we prioritizing and how do we work towards connection with others? How do you guys do that personally?


Sara Clime (28:44.622)

Or maybe you don't, maybe you're like, I don't know, I'm still learning and still. 


Amy J. Brown

Well, for me, I'm a huge, I'm probably 98 % introvert. So I've always picked myself by myself if I get the time. So one thing that I have been trying to do now, now my kids are older, I'm trying to see friends with skin on. I have friends that I talk to on Zoom, have friends I talked to on Voxer, and that's important. And those are ways you can connect with people.


But I am trying to make an effort to see people in real life because, you know, we've talked about this before, when you're with somebody, you can look at them and it's it's different and better. And if you have a best friend that lives far away and totally gets your life and it’s on Zoom, I'm not saying that's not good, but I've had to make the effort to find people that are in real life. 


And also you have to let go of the idea that you need a person that knows, has your exact same diagnosis. And we've talked about this a million times, but I think we get caught up in that. I have a friend, Kathy, who I adore. She has a really quiet life, two kids. I don't think any of them ever got in trouble for anything. She has a really quiet life. She's been my faithful friend because she shows up. And I can say, I need to say all the ugly things and she won't judge me or I don't want to talk about this at all. I'm showing up as Amy, not these children's mother today. She has, she doesn't have any kids with disabilities, but she has just been a faithful presence. And I have made an effort. She lives four miles from me. I will go months without seeing her, which is stupid. So we have made an effort. We put out on the calendar. Okay, next time we're going to see each other. We just make it, we decide once. This is the next time.


And I may not be able to make it, but if I don't make that appointment, then I'll never make it. Not that I don't love her. I just, life gets busy. 


Carrie M. Holt 

Sometimes I keep like a running list on my phone of people I need to make a coffee date with or something and just kind of try to not put pressure on myself, but just to remember that this is the person I need to connect with next. Like I need to put something on the calendar the next six weeks. 


Carrie M. Holt (31:08.942)

And it might be I can only get out of the house to see someone and have that kind of connection every six weeks. But that can be also I feel like in this stage of life, because I am married, and our two older kids are leaving the nest. I'm realizing that well, he and I both have been realizing, you know, for so many years, 15 years of we were on autopilot and we were like bison just heading into the storm over and over and over again. And we had become partners and roommates and not husband and wife. And so we've been trying to re-prioritize that connection with each other. And the word that keeps coming up in our marriage coaching that we've been going through is the pursuit. And pursuit takes effort.


And I think we can apply that to all types of relationships. We have to pursue those relationships, pursue that connection. And I think lastly, just, I keep going back to that I have to remain connected to the Lord and let Him fill me up because sometimes I'm waiting for all these other relationships to satisfy my need for affirmation or being seen when I really need to get that from God first.


Amy J. Brown

I'm gonna add something to what you said, Carrie, about pursuit. Like we were talking about how we're tired and how, especially young moms, I think we would all three say that having friendships for our kids has been difficult. So if there was somebody across town that connected with one of your kids, you would make the effort. We are, I will say this till I die, our wellbeing matters. We need to give ourselves, we need to pursue for our own wellbeing. We do it for our kids, no matter how exhausted we were.


We would do it for our kids. And that's not a bad thing. But I want moms to know it's okay to pursue for themselves because once again, it's a marathon and we have to take care of ourselves. And taking care of ourselves is one way is connection because we're not meant to do it alone.


Sara Clime (33:28.128)

 I think we have to give up this narrative that friendships and connections should be easy. It come naturally. doesn't. they all look the same. Yeah, yeah. It doesn't. I actually, you you were talking about that you were intentional about reaching out to people. I actually have something calendared. I know, shock, shock, but I have it. 


Carrie M. Holt

You have something on the calendar? 


Amy J. Brown

It's on a spreadsheet and a calendar, [inaudible], and a dry erase board. 


Sara Clime

Yeah, I schedule my showers, which are no joke. I have it on my calendar that says, “Sara, have you checked up on your friends?” And I have a list where if I know somebody had said on Facebook of prayers, my grandma is whatever, right? I will then, if it's somebody at church, I will seek them out. And I'll put a reminder on my set that Sunday morning, go talk to Amy, ask her how this is going. And it's really helped me develop some friendships where it, or least connection.


I had to let go this sitcom idea of friendships where there's gonna be four of us or even the two of us and we're going to go to the coffee shop once a week and it's gonna be funny and all these cute little antics. It's not like that. It's my friends asking me 23 times, do you wanna go for a walk before I can finally get it in? And I'm running out the door so nobody can change their minds. And it's me getting there and saying, it's, well, so we, my friend and I, we go for a walk and I'm like, she goes,”Okay, is this a Duchenne talk or not?” And I'm like, “It's DFC, it's a Duchenne free zone.” It's every time. Like I'm like, I don't want to talk about it. I just want to talk about something else. And sometimes we'll be walking, we'll do a lap and we're like, “All right, let's talk about Duchenne.” So, but I think you have to, it's not gonna be this cute sitcom type of connection all the time. And I think it's gonna look different for every season of life you're in.


Amy J. Brown

I love that you reach out because, you know, I'm not saying this being negative, but we all just kind of run our own mind all the time thinking about ourselves. So these people that you reach out, these friends you reach out to, that's reminding them, Sara cares about my grandma or cares about this thing. And that helps them reciprocate. So that is a little less intense than I'm gonna plan this big thing.


Amy J. Brown (35:43.626)

Just reaching out. Yeah, I should be reaching out. 


Sara Clime

Yeah, and if this person, if this friend is listening, I want to make sure that she knows it's not like I have to force myself to be friends with you. Right. But I'm going to use this as an analogy. There's a friend at church, her daughter just got married and moved overseas for a year. And I thought, gosh, I was sitting there one night and I'm like, that has to be so hard. Not only watching your daughter get married, but then just go across the world.


And I thought, man, that's gotta be so difficult. wonder how she, so I put a reminder on my phone that Sunday morning and I went and asked her about it and she immediately got teary eyed and she said, “Thank you so much for thinking about me.” And so we're not the only ones going through a hard time and we know that and we want other people to pursue us. And if I knew that Carrie put something on her calendar on Wednesday, “check in with Sarah to see how she's doing with X, and Z.” I wouldn't be like, well, you kind of stink as a friend because you had to put it on your calendar. I'd been like, I'm important enough to be on her calendar. So, it's not like you have to be like, hey, my calendar, by the way. 


Amy J. Brown

Yeah. I have a lot of 15 minutes to talk about your issues. 


Sara Clime

Right, right. You got 15 minutes. 


Carrie M. Holt

But I think deep down, in some ways, that nudging comes from the Holy Spirit, right? And when we feel that, we've got to respond to it because I know, you know, God will lay people in my heart to pray for, or, text them or whatever that is. 


Sara Clime

And I am such an efficiency person that I often, I realized that I was sacrificing relationships for efficiency. And that is relationships with the people in my house too. And there are just certain things that you have to do and it's, have to practice and you have to train yourself. And yes, it would be wonderful if I was just this woman that on a random Wednesday, I just thought of my friend and reached out and asked her to lunch and went out and did our cute little date. But that's not my life. My life is I'm most likely thinking about medicine or insurance. And in this certain season of life, now I've been talking to state representatives and governors and trying to get life saving medication for myself. It's like big stuff.


Sara Clime (38:08.384)

I still want to make sure that I don't lose connection either. I think when you also, when I focused on her, it made me feel so much better that I was doing something right. I think you get, you know, know that when you serve other people, you get more out of it than they do. And I think it's really hard to make that a priority. But it should be. I hate the should word, but it needs to be.


Sara Clime

Okay, I think we could talk about this all day, but we are getting to the end. And I wanted to let you guys know, if you haven't had a chance to look at our book, each chapter of the book ends with scripture or a passage and a few reflection questions. So in the loneliness to connection chapter, the scripture we have is Isaiah 43:2 (NIV), which says, 


“When you pass through the waters, I will be with you. And when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned. The flames will not set you ablaze.” 


So, when you reflect on Isaiah 43:2, list the waters you are passing through. This is an exercise that we would like for you to do. Just read that passage and list the waters you are passing through and ask God to help you so that they don't sweep over you.


List the fires of your life and ask God to protect you from the flames. God is already right there with you, waiting to shoulder it all. Turn to Him and connect with Him.


Sara Clime (39:49.45)

Okay, so for the announcement, next month, December 3rd, will be our last episode for season five. After that, we are taking a break from releasing new podcast episodes. We will also be sharing some new things next month that are in the work for each of us, ways that we individually can be serving you better. And next month's episode is gonna be really good. You won't want to miss it.


So make sure to tune in for that. We are so excited to be serving you guys in new and exciting ways. Do you have any questions or concerns or suggestions? You can email or leave us a comment on our website at www.takeheartspecialmoms.com. And again, we were talking about our book and if you haven't had a chance to check it out, we talk about, like we said, that first chapter is about loneliness connection. There's also 11 different emotions that we talk about and all of the messy emotions that come with being a special needs mom.


You can find it at your favorite online retailers. can find links to those retailers at www.takeheartspecialmoms.com/books.