Why Fixing Feels So Heavy (and Acceptance Feels So Light) with Carrie Holt

This week, I invited my friend and returning guest Carrie M. Holt back to talk about something that every special needs mom wrestles with, the difference between fixing and accepting our children.

We unpacked what those energies feel like, how they show up in motherhood, and how they connect to deeper themes of fear, control, grief, and peace. We also talked about how acceptance doesn’t mean giving up. It means seeing our children (and ourselves) as whole, right where we are.

Carrie shares from her own experience raising her son with complex medical needs and reflects on how her perspective has shifted from striving to affirming, from control to trust.

This conversation will meet you wherever you are in your own evolution as a special needs mom. Whether you’re in survival mode, rediscovering yourself, or finding peace in what is.

Episode Resources

• Book: Practicing Affirmation: God-Centered Praise of Those Who Are Not God by Sam Crabtree
• The Other Side of Special: Navigating the Messy, Emotional, Joy-Filled Life of a Special Needs Mom by Carrie M. Holt, Amy J. Brown, Sara Clime
• Carrie’s previous episodes:
  • Episode 98 – Tending to Your Soul with Carrie Holt
  • Episode 171 – Carrying the Heavy Emotional Load of Special Needs Nursing Care with Carrie Holt & Kacie Craig, Pt. 1
  • Episode 172 – Managing Special Needs Nursing Care Like A Boss with Carrie Holt & Kacie Craig, Pt. 2

Connect with Carrie:

• Website: carriemholt.com
• Substack: @cmholt
• Instagram: @carriemholt
• Facebook: @carriemholtwriter

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

Transcript

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Speaker 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.

Speaker 2 1:13

Hello and welcome to the Special Needs Mom podcast. Today's episode is an interview style episode. I'd say more, it's like a partner episode because I asked a previous guest, actually, she is a th Rice appearing guest on the podcast. I asked her to come on and talk with me on a particular topic, and that topic is accepting versus fixing our children. And we'll obviously talk more about what the distinction is between the two, but they have very different energies and one feels very heavy and one feels very light. Neither one are easy and so I think it's a really, really rich topic and one for us moms to reflect on in how we're showing up for ourselves and for our children. So lemme tell you a little bit more about Carrie. So. As I mentioned, she's a previous guest of the podcast. She first appeared in July, 2022 on episode 98 called Tending to Your Soul with Carrie Holt, and then her second appearance actually. So maybe she's a. Four time guest because there was a two part episode. The first one being carrying the heavy emotional load of special needs nursing care with Carrie Holt and Casey Craig. So I had these two amazing women come on and do this episode with me, and those episodes are appeared November 8th and 15th of 2023 episodes number 1 71 and 1 72. So. All worth checking out, particularly if nursing care is a part of your life or in home care of any kind. These ladies have amazing expertise and it was really a well, well appreciated episode by many. Alright, well, let me tell you more about who Carrie is, speaker, author, podcaster, caregiver. With nearly two decades of experience raising a child with complex medical needs. She's a podcast host of this unexpected life. She shares stories of resilience, faith, and finding God's presence in the midst of suffering. She's the co-author of The Other Side of Special and has been featured on Focus on the Family, moody Radio, family Life Radio, and other. Notable platforms with honesty and hope. She encourages women to trust God when life doesn't turn out as expected. So a little bit about her son. He's officially an adult, I should say, her son with disabilities. He's an officially an adult, 18 years old. He was prenatally diagnosed with spina bifida and hydrocephalus. He's had. Two life saving surgeries the first week of his life and then they left the hospital thinking all was well ish. Two weeks later, he went into respiratory failure back into the hospital where they spent the next month fighting for his life. 64 days after admittance, they brought him home and they brought home a medically fragile baby with a trach ventilator feeding tube, and 24 7 nursing care in her home. Currently he's had 66 surgeries and overcome so much, and so now I know you will love Carrie. She has just shown up extraordinarily in so many different ways in her life, and as I suspected having her voice as part of this conversation part of this topic. Was richer than I could have done myself. And it's funny 'cause I actually had it on my mind for years to talk about this. And it wasn't until it clicked that it wasn't supposed to be a solo episode. And so I trusted my gut, invited Carrie on and. We're talking about this aspect of fixing versus accepting, and this is something I see come up pretty regularly, particularly when I talk about what I call the evolution of a special needs mom. Now, this is not a lineal progress or progression. This is just ways of identifying parts of the experience that we have. It's more of a like messy circle. Then it is a line, but you know where we start with what I call stunned survival, and it is what it says. It's like we're surviving, we're stunned, we're learning new language. We are just kind of figuring out what is up and what is down. After we have a diagnosis or event. Then we move into the stage where I call stabilized yet self-sacrificing, and this is the stage where. The fixing energy is strong, my friend, just like the force is strong in you, the fixing energy is strong and we give it all. We got the mama bear energy. We start to lose who we are often in this stage because we are up against what feels like two terrible choices. And so moms usually choose, they're young and they choose to. Show up in all the ways for their children and in none of the ways for themselves, which then lands us to what I call the next stage, which is alone and afraid. And so this is where we hit up against our loan limits, what we used to do. That big, brilliant mind of ours is not able to solve this problem. And we're like, what do we do now? This is very hopeless. I feel very alone. I feel afraid because everything I know to do is not working and we can't have it go on like this, that. Opens up the door to the next stage, which I call the restoration, otherwise known as calming the chaos. This is where we start to engage with who we are. We restore our identity. We shift from, I can't to, how can I? Very fundamental shift. And then ultimately we move into the last stage, which I call power, peace, and possibility. And I know it sounds lofty and remember, this is not a, we don't live here forever, once we arrive. But it is learning a new way of being. That has us show up differently as moms and as women. So I ran through that really fast. Um, but that's the reason why this conversation is so important, is because this fixing and accepting conversation is so common, and it's one that will have us feel very, very stuck. So let's get into the conversation.

Kara 7:07

Welcome to the Special Needs Mom podcast. Carrie, I'm so glad you're here for not the first time, not the second time, but the third time.

Carrie Holt 7:15

It's great to be here. Thank you for having me. I feel very honored.

Kara 7:20

I am a big fan of Carrie and actually that's what led us to this particular conversation today is I was listening to your podcast, the This Unexpected Life. Did I get that right? I wanna make sure I get exactly right. I almost said the, but no, it's this unexpected life available where all podcasts are available. And I was listening to an episode where you weren't talking about this specifically, but you shared this aspect of this navigation of fixing, or even, I loved your language about it, the temptation to try to fix versus acceptance. And I think this is one of those topics that. If there was a book, to read to figure out how to be the most incredible special needs mom, this would be like a handful of chapters. So I asked you to come on to talk about this specifically, and little backstory is. so on my wall here in the office, I have a bunch of post-it notes of episode ideas and I kind of map 'em out and I've had this post-it fixing versus accepting on for, I don't know, maybe a year. And it just never had find, found the right time. And I heard you talk about this and I was like, oh, it's 'cause it wasn't meant to be a solo episode. It was a meant to be in conjunction with you and our shared experience. So thank you for accepting my invitation.

Carrie Holt 8:40

You are very welcome.

Kara 8:42

Okay, so before we get into the episode, for those who haven't gone back and, gotten an experience of who you are, let's share a little bit about a snapshot, just what your life looks like today. a little bit about where you've come from, but why don't you share a little bit about who you are with our listeners.

Carrie Holt 8:59

Sure. So I'm Carrie Holt and I live in central Ohio. Been married to my husband 25 years, which is really cool. We just celebrated our 25th anniversary. Couple months ago, and I have four kids and we're in that half empty nest stage where I have two old, my two oldest sons are in college, then I have another son who is 18 Toby, who has disabilities and has been medically fragile and we've had a lot of surgeries. And then my youngest is a girl and she's 15 she's a sophomore in high school. So we're just kind of in this stage of is calm sometimes. And then. I feel like the last few months have just had a lot of doctor's appointments, a lot of that have just come up. I always feel like it's feast or famine. Like we'll have months where we have nothing and things are going really well, and then we have months where I can feel the stress in my chest because we are running nonstop back and forth to the hospital and coordinating surgeries and all of that. So.

Kara 10:03

Yeah, in that, we were talking a little bit before the episode and then that surgery coordination piece, that work is no joke.

Carrie Holt 10:10

It's not,

Kara 10:12

That work is, that is intense, I think is a little indescribable. Okay. Well, thank you and. another thing I wanted to put in before we kind of get into the, the meat of the conversation is that when we're talking about this topic, fixing versus accepting there, really it's. A conversation that has nothing to do with our children, per se. Yes, it's around our experiences as we show up as mothers for them, but I think it's so important to acknowledge that fundamentally, I don't believe that our children need to be fixed, ever needed to be fixed. It's really a conversation about how we serve our children and, and the triggers that get. Triggered in us as parents

Carrie Holt 10:58

Yeah.

Kara 10:58

we navigate these undeterminable paths for our children. And, and while of course we will pull from our personal experiences, we have a commitment to protect the honor and dignity of our children. So not pulling their whole story and putting it on display will be our intention. So if we talk in Ities or not abundantly clear about exactly what it looks like for our own personal lives, that's the reason why. Is there anything you would add to that, Carrie?

Carrie Holt 11:25

No, I. Yeah, it's just as you were saying that, I was thinking about a lot of the fixing has had to do with own personal insecurities.

Kara 11:36

Oh yeah. I got the chills when you said that. Yep.

Carrie Holt 11:39

So yeah, this is the journey of us as moms, not finding our identity and our children, how well we think they're doing, or how far behind we think they are.

Kara 11:49

Oh, very well said. The pitch that I had to you was to talk about this temptation to fix versus accept our children the way they are and also the complexity. Of answering that question of how do you help your child reach their full potential? And I loved this Is the language that you used reach their full potential? Because I think it takes the, emphasis of the value that we get from productivity and what we achieve, but really centers, the conversation around. What full potential looks like for that child. And I, I really liked the language that used about that. So that's kind of where we're going. And so we're gonna start with talking about the energy of fixing, particularly fixing versus accepting. And I think there's questions that come up all the time. Where do we draw the line as mothers of these children? How much therapy do we do? How hard do we push them academically? And so I wanna talk about what do you experience in this fixing energy when you think about it?

Carrie Holt 13:00

So I think there's a tension there, of course, because there is that desire. I do think that we do have some God-given Mom instincts around, I think this. The potential that my child can reach, maybe it's speaking or eating by mouth or whatever those things might look like for your child. have this belief in them that they're going to reach this and this is their full potential. I can say personally that I've always been a fixer and, and not just, and I have four kids,

Kara 13:33

Mm-hmm. Mm-hmm. Mm-hmm.

Carrie Holt 13:36

still homeschool. But I began to realize as a mom that my desire to fix is really about a brokenness inside of me. That I have a hard time with things being undone, with things looking not perfect, you know, and you could ask my husband. years, that doesn't go over so well. You know, just always pointing out,, this is where you can improve. And I think largely it's because I have just always been trying to fix myself too. Two,

Kara 14:23

Mm-hmm.

Carrie Holt 14:23

and it just comes out when you have a child with disabilities. All of a sudden it's just a little bit more obvious, of these ways that we want them to be normal maybe to even be less judged by the world and more accepted. But there's a lot of striving, there's a lot of non-res in that.

Kara 14:51

Ooh, that's a really, really great. Description non-res, and I think hearing your reflection of like it's about a brokenness inside of you, I think it makes me think of the enoughness of who we are

Carrie Holt 15:09

Yeah.

Kara 15:10

and. Period. And often we don't experience being enough. So again, kind of back to where, I fundamentally believe that we are enough, period. and yet also most of us have a, Strive. We have an unrest about that being the question. We question if we are enough, and there was something else that you mentioned I wanted to talk about. or even just kind of speak to this reflection. You know, our children, whether right or wrong, we often, believe that they're a reflection of who we are. That we will be judged by how they show up. And I think that when I think about this fixing energy, I think about how it is for me. And I think a lot of others driven by fear. It's this fear of, you know, my kid has to learn independence or else they will live with me forever. And so like this fear of the future, if. I don't, or if they don't, then, so there's like this formula we live by and it's all this fear. And if you think about what fear does is it constricts, it closes, it's rigid, and not often very, enjoyable to experience. And so if we think about being in this space and then showing up for our children. You can just see how that's gonna get a little wonky or a lot wonky real fast. And ultimately, I think it's like when the worst of me comes out, you know, when I don't show up with the compassion and the grace and the patience that I would like to have.

Carrie Holt 17:05

Yeah.

Kara 17:07

I think another thing about the fixing is that. a lot of it I think like we're inside of the automatic, so, you know, you talked about like it's, you started by, you know, this is a brokenness inside of you that. Appearing. And so I think about this fixing and it's almost like the first thing that comes to the party when we are thrown into the deep end, if you will, and navigating all these challenges that we just probably don't, didn't have the skills yet to handle. I feel like it's kind of the automatic that jumps in, like the solution that we think is gonna solve everything is this fixing energy. And I think another trap of that is that, There's a never endingness to the fixing. which then opens up a real big door to the guilt party because there's often not enough time to do all the things that we think we have to, or that we should be doing. And have you experienced guilt that you think is associated to the fixing aspects?

Carrie Holt 18:08

Yeah, definitely. I mean, I can just think of like, the word that kept coming to mind too is control.

Kara 18:14

Yeah.

Carrie Holt 18:14

when we're fearful, we want to control, and of course, when the initial diagnosis happens, immediately it's just, okay, what can I control? What, what can I grasp? And then when those things slip through our fingers, maybe it's that our child doesn't speak with verbal words all of a sudden then there's guilt. Like, I didn't do enough, you know, or we didn't find the right therapist, or we didn't find the right method, or whatever it is. It's just this all the time to. make this better, make this better. And I can remember just one time in our journey where I actually had a doctor just kinda look at me and say, because of this going on medically, need to let this dream go. And

Kara 19:11

Hmm.

Carrie Holt 19:12

okay. And it was almost like he gave me permission. It was an outside voice that gave me permission. this just wasn't possible anymore. And then when I knew it wasn't possible, the guilt kind of just dissipated and I was willing to accept. But there was also grief

Kara 19:32

Uhhuh. Yes. Yes. And we are gonna talk about that aspect of, you know, the acceptance. Yeah. And it's so interesting 'cause I'm, I'm thinking about, a story is coming to my mind about, so this is, so many years ago, this is when Levi was. Probably about three. And so after his first surgery, he, when he was two, he, it wasn't abundantly clear what was happening with his vision, but what was clear is that the, ophthalmologist had asked us to patch his sighted eye or what was known to be his sighted eye. not his compromised eye for four hours a day. Now that was hard with all of the other things. I had a newborn. Et cetera, et cetera. And actually, my dad even sponsored, a caregiver to come in and be his one-on-one to do that work. 'cause otherwise it just wouldn't have been possible. So we were pretty diligent, on doing this for about a year. And there's so many parts where I remember, you know, Levi saying something and me thinking, oh my gosh, he's seeing, he, it's working, you know? And what I didn't know is that he has no light detection in his. Non sided eye. And so that by, patching him for four hours a day, we were actually blinding him. Completely for four hours a day. And I think about this, and this is an instance actually where I can look back and I was like, I actually wasn't in the fixing energy. I, I was actually just like, okay, like this is what we need to do to restore his sight. And we did that and it, we came to that crossroads conversation with the doctor, where essentially we came and reported back what we thought. And I remember the doctor like visibly was. Shaken aggrieved. He was, he literally turned to us and said, you know what? Well, at least we know we did everything we could.

Carrie Holt 21:23

Hmm.

Kara 21:24

'cause if we had any chance of restoring any site, we would have. And, and so I bring this story up, not to actually talk about fixing, but to talk about the almost imperceptible difference between fixing. Doing the hard work of special needs mothering

Carrie Holt 21:42

Yeah.

Kara 21:43

and that this conversation will require you to reflect on the nuance of the, of what you're bringing. And I wanna kind of put in a little like cautionary note here is that our invitation is that if you find. That you are doing more fixing than what I'll call serving. the invitation is to compassion, to self-compassion, to have it be a opportunity to ask yourself, what do I need given what's happening? What do I need? So that's a little segue, but I think important because I think part of the challenge here is it's so hard to tell what. Coming from, like this fear-based fixing that we're talking about and what is coming from perhaps, acceptance. So anything else on the fixing aspect, Carrie, before we turn to look a little bit at acceptance and what that looks like?

Carrie Holt 22:45

Well, I can just say that I feel like just further down the road, that I've just, it's funny that we're having this conversation today because the irony is not lost in me that this is something that I have felt like has come up in my own. just like my conviction spiritually lately, because I have realized lately that the only conversations that I'm having with my son who is verbal and we can have these conversations, been about everything he's doing wrong.

Kara 23:20

Mm-hmm.

Carrie Holt 23:21

And, and it just hit me like last week or two weeks ago, I was listening to a podcast. It was actually about, husbands How I just realized that, know, he, needs my affirmation. He needs me to be his biggest cheerleader. The likelihood of him getting married and having a wife and having someone to cheer him on maybe lower than the average person. And if all he's hearing from me is. boo. Like, you don't do this right? You don't do this. Well, that's not good and it's not going to help him. And so I've just been intentionally trying to, like you said, look at him with compassion and realize, you know, it's hard when your kids can verbally speak because you have a hard time differentiating between what they can control. And what they can't

Kara 24:27

Mm-hmm.

Carrie Holt 24:28

to their behaviors. But then I also look at the history and all the brain surgeries my son has had, and again, I, it, I feel like this tension between fixing and helping them reach their full potential, it doesn't go away really. Their, for the most part, I mean, maybe there are some exceptions to this, but their entire life. just what was my focus and my focus needs to be affirming.

Kara 24:55

Mm-hmm.

Carrie Holt 24:57

his progress, even if that is the tiniest, tiniest baby step that he's making a choice, his words, whatever it is, that it's not, it's not my job to fix him.

Kara 25:12

That is such a important part of this. I thi my husband and I have had the same conviction and, you know, we'll, we'll kind of pause for a second and kind of like check ourselves and be like, think about. The sum of what Levi is experiencing. Levi, don't do this. Levi. Stop chewing ice. Levi leave. Like even it's like the tone

Carrie Holt 25:34

Yeah.

Kara 25:34

how we show up because yes, there are a lot of things that need correction, coaching, parental involvement,

Carrie Holt 25:43

Yeah.

Kara 25:44

a lot of the times they're really frustrating. And yet I think that. It's the internal shift that we can have that approaches them with what you said is affirmation and I think that's where this acceptance will lead us in, instead of having essentially us relate to them as the problem, we relate to them as like more like just a full human.

Carrie Holt 26:13

Yeah,

Kara 26:14

that has a need and it's, it just totally changes the way that we relate to them. But again, this is an internal work. This is like a, where we, you know, they aren't very likely in many cases going to change how they're doing things at this point. My son's 16, your son is over 18,

Carrie Holt 26:32

Yeah.

Kara 26:33

and so I'm at the point where I'm like, okay, I think. You know, for a, a large portion of things, we are where we are. By no means are we done growing and developing, but there are certain parts where I'm like, okay, this is what our reality is. So let's let that move us into this conversation about acceptance. Now, I think I've, if my memory serves me, I've probably done full episodes on acceptance, so we can go back and inc cite those in the show notes. But acceptance is this really tricky thing because I find that most people. Confuse acceptance with approval.

Carrie Holt 27:10

Hmm.

Kara 27:11

And actually I have a good friend who is going through a divorce right now. It is not a divorce of her choosing. And she's kinda like, how do I accept this when I'm like, this is not okay. And I'm like, oh, there you go. Acceptance is different than approval.

Carrie Holt 27:24

Yeah.

Kara 27:24

And so I think I wanted to put that in there and orient us to the actual simplicity of acceptance. And, I did the honors of looking up Webster Dictionary. Definition and, and so the definition is Actually accept acceptance is a whole nother verb concept, which I'm sure you could tell or not verb. What is it? What is it? Is that a noun? I don't know what it is.

Carrie Holt 27:49

it's a noun.

Kara 27:52

Yeah, because the, it would be the act of doing, accept,

Carrie Holt 27:55

Yes.

Kara 27:56

This was not my area of expertise. Ask me anything about plants. I'm got you there. Okay. The official Webster definition of the word accept, believe, or come to recognize an opinion, explanation, et cetera, as valid or correct. And I think how I would translate that to how I experience acceptance or to accept is to accept something as truth, to let something be true. And what would you add or kind of share in terms of how you've struggled with the concept of acceptance over the years?

Carrie Holt 28:39

I think I'm thinking of that specific instance when the doctor said it's, this is okay. And I feel like acceptance is saying, like you said, this is the truth. This is what is, but also that this is okay, that this is what is, and even if we feel like it's broken,

Kara 29:07

Mm-hmm.

Carrie Holt 29:08

if that makes

Kara 29:09

Speak more on that. It's almost like there's two levels of acceptance. There's like this part where it's like, okay, this is what is. I think that's a great simple way of like, this is what is period.

Carrie Holt 29:20

Right.

Kara 29:21

but I think that there's this piece where I think, and you know, because you and I share a common faith in Christianity, I think that there's a deeper acceptance of that this is okay. And I think I find that leaning on. The bigness of who God is and the essentially trust that like this isn't the whole story. There's also a lot of feelings of like a little mad still about it,

Carrie Holt 29:53

Yeah.

Kara 29:53

right. So

Carrie Holt 29:54

Right.

Kara 29:55

mean it's all like, oh, this is so wonderful and like, but I also, the word surrender is coming to my mind, but I feel like so, so. What do you think about, there's this like twofold part of acceptance where it's like there's this blanket acceptance, but then there's like this deeper acceptance that maybe is tapping into that like spiritual piece that we find in, I don't know.

Carrie Holt 30:16

Yeah, I think it comes down to holding like our grief and the trust and the joy together because. And I can be a little bit specific with this because I think my son would be okay with me sharing this. Like there was just a time, because my son has spina bifida and he ended up worse, way more medically fragile in that aspect of spina bifida I had ever anticipated or desired or wanted. And we worked so hard for so many years with braces and trying to walk, and that's almost the first question you get with my son's diagnosis is, oh, can your child walk or what level is, are they, you know, do they have braces? Do they have this, do they walk sometime? Do they have a walker? And it was in that moment when his doctor said. It's okay for him to be a full-time wheelchair user. He will have a better quality of life because he won't be worn out or exhausted or, and because we're going down this road with these specific medical care we had to go down, it's really not feasible anymore. I think some of the acceptance was grieving that. I think it kind of went back to like just having peace about what other people thought. That we hadn't just given up, that we hadn't or if and I, I hesitate to even say that because I don't think it's giving up. Like I, I do not like the phrase wheelchair bound.

Kara 31:57

Mm-hmm.

Carrie Holt 31:58

not bound by his wheelchair.

Kara 32:00

Mm-hmm.

Carrie Holt 32:01

allows him to have. and life and access to the world in a way that he couldn't have if he did not have it. And so was this acceptance of, you know what? His value and his worth does not come he can walk. I have to remember that his value and worth comes because he is a child created in the image of God. And we're not settling. This is the reality. This is the truth of what is what, his potential is, his maximum potential, and grieve that and rest and trust that there is a purpose in this and one day. In heaven, he will walk again. And I fully believe that we have that hope. So it is just, I know I'm rambling a little bit, but it's just this tension really, I think what is, what we maybe hoped could be there. So there was this song I came across I spoke for years at our local children's hospital. About family center care, what it looked like from the family's perspective. And for many years, I would end my presentation with this song called Shine. It's through signing time basically, this mom created these amazing videos for her daughter who was deaf, and she also had a daughter with spina bifida. But the song basically says like Lucy will do what Lucy will do when Lucy's ready to do it. And you know, Sally will do what Sally will do. When Sally is ready to do it. She's gonna shine in her own way, in her own time. And I do truly believe that about our kids, that their trajectory of their path and their journey is gonna look so different than even another child with the same diagnosis. And we need to. I feel like, I'm sorry. I feel like if we're just fixing all the time, we're not loving them for where they are, who they are, celebrating. There's small things, the small ways of healing, the small joys, all of those things. If we're just always so focused on fixing and, we're fighting, we're fighting. Instead of leaning into, okay, this is okay, This is the truth of where they are and I am not gonna fight this anymore.

Kara 34:35

Yeah, I think that, You can see, if we're fixated on a certain result that our child produces, how it would make it pretty impossible to genuinely embrace and cherish where they are today and even the small milestones. So I think that's a great aspect. And as you were, you said rambling, I thought it was just all your wisdom flowing out. I was kind of synthesizing What you had said earlier and I was like, oh, what you were speaking to earlier when he talked about acceptance and saying, and it's okay. I think it's that acceptance leads us to peace. And it's that peace. There's this, there's this peace that I have experienced when it's, we let go of all. All the things actually, and we recognize whatever it is, it's okay. or maybe it would be. More, resonant to say and I will be okay. I know that certainly in my son's cancer journey when we've been approaching surgeries and a lot of unknowing of what's gonna happen, I had to do some real deep work of acceptance and that acceptance really, really opened the doors to peace.

Carrie Holt 35:53

Yeah.

Kara 35:55

I think that that connection was, was so important, so I'm so glad you were able to kind of help us get there. The other thing that kind of just summarizing what you shared is that there's this opportunity for us to show up as moms to help our child reach their full potential and that is what they can do.

Carrie Holt 36:15

Yeah.

Kara 36:16

there's value in this, right? But that is distinctly separate from the value of who they are. Like these two things are, are unrelated, even though are very, I'll call, I'll say normal. what you see most everybody doing is conflating the two together, like mixing them up. Is that, and you know guilty of this too, you know, we were. Raised in this society that is like, you are only as valuable as what you produce. And so untethering that, may be, you know, our life's work. I don't know.

Carrie Holt 36:48

Yeah, and I feel like I've been on that journey too. And know, when that specific instance happened with that doctor,

Kara 36:57

I.

Carrie Holt 36:57

when I started to ask the deeper questions of why, why do I feel like this is what I need to fix? Why can't I accept it? Well, that deeper, that deeper why was again that brokenness in me that I can't tolerate things that I don't feel like are whole perfect or wrapped up in a nice, beautiful package with a bow. why is that? And you know, that's been some of the deep soul work that I've been on with, you know, my story of origin and understanding that. Acceptance doesn't mean that I'm settling.

Kara 37:43

Yes, and I'm so glad you brought this point up. Tell us more about your experience and kind of how that works for you.

Carrie Holt 37:50

I think it just, it doesn't mean that, again, that deeper question of why. you know, some of it was just pride, honestly, that I didn't want the world to judge my child to judge me. Again, that guilt, like I haven't done enough to get him to walk. I haven't, haven't done enough. We've settled and the fact is we, didn't settle. We were accepting what is and choosing Not, you know, I was thinking about this like, how do you know when to stop pushing your child? I think when they're fighting you constantly and everything is a fight and there's no peace, that word you said, there's no peace. It's time to say this is okay. And to move on. And here's the thing. It doesn't mean that there's not a possibility. That later on, this might not be able to be picked back up again in, in some cases, right. We walked away from, you know, occupational therapy years ago because there just wasn't peace. And it wasn't because I was oh, there's not more work to be done in this place. It's, you know, what for, not just. A problem to fix. He's a soul, to be nurtured. And it's not just about his physical and mental, it's about his spiritual, it's about his whole self. And how am I caring for him in that way? Or am I just trying to get him better so I look better as a mom or so he doesn't get judged in society? Well, that's not a reason to keep doing things. And I think that's where it's not settling. You're saying, you know what? I'm at peace with this. It doesn't matter what other people think. It doesn't even matter what I believe, you know, falsely believe sometimes about myself or, or my child. It's that I'm gonna rest and have peace in this because this is what's true. This is what is right now, and it's time to move on and maybe just focus on what is and. be okay. Be rejoicing in what is currently right now. We don't always have to be, like you said, producing more, striving more, fixing more. We can settle in the moment and rest in what is right now.

Kara 40:07

Yeah. And I think a question that I think could be helpful for all of us to ask ourselves in those moments where we're, wondering if we should keep going or if we should, surrender is what, if it's okay for me to let this go?

Carrie Holt 40:23

Yeah.

Kara 40:23

I, I like that phrasing of the beginning. What if it's okay? It's almost like an invitation to consider the possibility of the okayness and kind of meets us in that gentleness. That I think is a great way to approach this with ourselves. And another, I think, important aspect to say here is that. The practitioners that are helping with our children may have very different perspectives that, the OT might've been an expert in their fields and really had an opinion on how, frequent and, and what should be done. I'm thinking back to early days where, the school wanted to have PE services, adaptive PE services and have a IEP goal. so Levi could jump. That would be the goal. And this is after years, years of physical therapy, and I just had to say. No, we're gonna let that one go. And, you know, the, the PT was well intended, right? They're looking through the lens of physical therapy and, you know, but I'm looking at the, through the whole experience that this child is having and recognizing that. One, we may have already achieved what we were gonna be able to achieve, jumping or not jumping. And also the value of jumping versus not jumping at this point may not have been a critical one for us to master. so I think that acknowledging that we will be the experts in knowing our children, whereas we get to lean on the expertise of the, different professionals, to then essentially make the decisions we do for our children.

Carrie Holt 41:58

Yeah.

Kara 41:59

So there is a myth about acceptance that we've talked about a little bit, but I wanna, I wanna really highlight it too, and that I think a big fear in acceptance is that we'll become apathetic and won't advocate or fight for our children. So a lot of people like resist accepting because I think then. They will say, well, it's okay. And they're like, but it's not okay. And so the fear is that if I say it's okay, then I won't do anything about it. And maybe it's something that, that does feel really important. talking is a great one, right? Like I think talking is, or speaking, you know, verbally I think, is one that a lot of time and energy is put into and the impacts of not being able to be verbal. In the ways that a lot of people can be verbal is really, it's very impactful. And so I think that accepting doesn't necessarily mean that it's like, all right, hands off. The steering wheel won't do anything. It actually just means that we might approach it differently. Would you add anything to that?

Carrie Holt 43:05

Yeah, I guess what I would just say is it doesn't have to be an either or,

Kara 43:10

Nice.

Carrie Holt 43:10

right. It,

Kara 43:11

Yeah.

Carrie Holt 43:12

live in the both end and find the way to, you know, have some middle ground there. I don't think it has to be either or. I think it'd be both and.

Kara 43:23

Well, all of you cannot see my home office here, but I do have a little ampersand. A little sign a little like this, the am symbol. because it's like me and my coach, colleagues, big Joe. 'cause like it's always about the both. And so yes, I'm a big fan of always kind of shifting towards that. And versus either or. And now let's turn to focus a little bit on what we've talked about a little bit, but I wanna give it, any more space if, if we have anything to add on the relationship between acceptance and grief. And I guess even just initially, when you think about when you accept something, the grief you experience, what comes to your mind?

Carrie Holt 44:08

Oh, just how think in order to accept, you have to grieve.

Kara 44:15

Hmm.

Carrie Holt 44:16

I don't know if we can get through acceptance without grief and lament. And, and stating, you know, personally with my faith, crying out to the Lord of this is not what I wanted. know, this is, and in that tension of that, I don't think this is a one and done thing. We're always coming back to the grief. We're always coming back to, but this is the reality of my situation, and I don't necessarily like it. I am, gonna accept it because I feel like when we don't accept it, we're fighting it. And in fighting there's not peace, there's bitterness, there's anger. And I think when we lean towards acceptance it doesn't mean that we're saying, yes, I wanted this right, it's saying yes, but like, I am gonna accept this, I'm still gonna tell, say. know what I, this is hard, this is sad. This makes me have sorrow. I am gonna cry out to you, Lord in this, but at the end of the day, I'm gonna choose to trust and I'm gonna choose peace. And sometimes I think we have to do that on a daily basis depending on how we're confronted with fixing versus, you know, with in, in this journey because. sometimes we are confronted with this on a daily basis. Decisions about fixing.

Kara 45:53

Okay, so as you're talking, I'm picturing this and I love how you were like, I don't actually think we can accept. Before we grieve. And, but then it's, there's this back and forth and it's almost like, so I'm picturing this like, I don't know, like reduce, reuse, recycle, like circle of like, it's, it's going back and forth or maybe round and round. And there's this, there's this constant dance with accepting and reac, accepting and grieving. 'cause I think another myth is that I think you highlighted is that. When we accept something, actually then the impact is then we have to grieve it and, and a lot of times it's like, I am so sad. I am so sad when I accept that this is what. Is then all that's left for me to do is to feel the impact, to feel the loss

Carrie Holt 46:46

Yeah.

Kara 46:47

to grieve, what I long for or what I, or what my song longs for. And so I think this picture, I want everyone to picture like this, like circle. maybe the arrows are even going back and forth, but there's like, on this circle, it's like acceptance and grief and sadness and anger and joy and sorrow. And delight and, you know, surrender and celebration and it's like all in there.

Carrie Holt 47:11

Mm-hmm.

Kara 47:12

We're, we're tumbling around.

Carrie Holt 47:14

Yeah, never linear, I don't

Kara 47:17

No. Well, and then you're describing, you know, kind of your orientation, you know, your story of origin and like, and I very much relate to the experience as you're sharing. It's like we talk about control, things not looking perfect, and it's like the desire for the lineal aspect of like, I do this and that turns out just like I want it and then I have this, and then at the end the equation is. Whatever wonderful thing I want. And so, I think there's this tension, you've used that word, it's like, of wanting this like neatness and then actually it was a image that a therapist I had worked with briefly many years ago. She described, the non lineal experience. and like basically it's like a ball of yarn. Like, it's like a zigzag, like not even a neat circle like I'm describing. It's like way messier than that. So I think very well, very well articulated there. Okay. Now the last aspect here, I wanna talk about showing up as mothers to help our children reach their full potential. Let's hear about when you think about helping your child reach their full potential. What comes to your mind?

Carrie Holt 48:29

So I can specifically think of just a couple things. S throughout, you know, our journey that, we did spend I think nine years or so speech therapy, feeding therapy to get my son to eat and to get my son to talk. But I think deep down I had just, I feel, I feel like God gives moms these gut mom instincts. And I just had this feeling and there were little signs along the way. You know, being able to suck on a pacifier and not get aspiration, pneumonia, just different things where I thought, you know what? I think this is something that he can do again, it's not going to happen in a year, two years. It didn't even take five years. It took nine years and it was a lot of, stop starts. It was a lot of trying different things. It was a lot of switching therapists or taking a break, or again, like the process wasn't And it, it's kind of like if you think about, you know, working out right, you have a maximum potential. You don't wanna put too much stress on your body to where you're hurting yourself. You have injuries. But you wanna put just enough tension you are exercising the muscles to give them their maximum potential. And I think that same thing what we can do as moms with our kids. Where Yes. You know, some of the tension hurts a little bit, right? Like it, oh, I can remember the tears when we would try to feed him baby food and he would just cry and it would break my mama heart. But I knew it was safe. We had doctors that told us it was safe, and he made progress slowly. And so I think you have to think about your goals. Like I know you said that earlier, like what is. What is the goal? Is this all about me fixing my kid or is the goal about helping them reach their full potential? And then we have to just, I think, ask God for wisdom. for wisdom to know what is that balance of we're pushing too hard and we're running a full marathon, day one outta the gate. Or we're, you know, there's enough tension, there's enough, just slight, you know, push. To help them reach their full potential. And then I think there's grieving in that too, because it's definitely probably not gonna happen on the timeline that we think it's gonna happen. And so we just have to be willing to allow them to move at their own pace, their own time and realize that by the age of 18, they're not done yet. They're not done yet. We're not done yet. You know, I'm almost, I'm edging up towards 50. I'm not done yet either.

Kara 51:27

That's a great point in really recognizing there's not a doneness that we achieve. But back to the working out analogy, I think that's a really great one because if we think about our own selves and what it takes to. Kind of be in the pursuit of our own, potential as it relates to health. It takes some, commitment. It takes some urging, it maybe takes some accountability, and I think to do it in a way where we don't injure ourselves, especially as we're aging. it takes, receptiveness to like, maybe now's not the day, to go do a major CrossFit workout. Maybe today's the day to, to walk, or maybe today is the day to actually not do anything in service of your whole health potential. And, so I think there's this like, what's the word I'm looking for? Maybe it's like there's this, attending to what is and being very observant. and it's that like equal parts commitment and grace paired together. So potential when I was thinking about this potential, I think it brings up a couple things for me. firstly, I think it brings up a lot of vulnerability so Levi has a very, very, very clear articulated voice. He's able to talk, amazingly, he's what would be considered intellectually typical, kind of with a few caveats, knowing that we have a lot of brain impacts. but from a, he can do, algebra, let's put it that way. which in some ways. Orients people to put 'em on a trajectory of, you know, college and what's next and, and this and that. But it's also paired with what I would describe and I've talked about on the podcast, is a very compromised, judgment, impaired judgment. And so the two together are, are for me, very hard to navigate because he has desires and. Doesn't necessarily take the whole picture that I see into perspective. So when I think about him reaching his full potential, I think about him wanting his desire to be fulfilled and my desire to protect him. And I think that there's this push pull tension of like, I think that my desire to protect him. And if I'm really going to say the whole picture and my desire to protect myself, both in terms of vulnerability, but also just my energy, of what it takes to be the person to support him in, in the things that he wants to do. I think it just, I'm just kinda like, I don't wanna do it tomorrow.

Carrie Holt 54:08

Yes.

Kara 54:09

Or I don't know, like it's really, it's a little intimidating, I guess is the word. and I think because the life season we're in, like we're in those conversations like on the daily.

Carrie Holt 54:17

Yeah.

Kara 54:18

But if I pull back and say, okay, I don't know how, I don't know how this is gonna work. I don't know the who's and the how's, but I do know that I'm like, okay, if I think about his full potential, it's like I, what I want for him, what I think is his full potential is to be fulfilled. It's to say I am fulfilled in my life and to find places of belonging, to identify for him to self-identify as a valued member of society. I think those are the things that I'm like, okay. I'm like yes to all those things. And so I think then it's stepping into the vulnerable steps of What it looks like to create that. And I think goes back to like what you talked about is then, then enters in more grief because it's not always gonna go how we want it to go. And I don't know, I'm definitely gonna be taking little baby steps and seeking wisdom, along the way from all the moms that have gone before me.

Carrie Holt 55:13

Yeah. I know. I can just speak into the space a little bit. For me, it's been about releasing control

Kara 55:19

Mm-hmm.

Carrie Holt 55:20

because it's such a. Like you said, and when you said about protecting yourself,

Kara 55:27

Mm-hmm.

Carrie Holt 55:28

there's a measure of, at least for me, protecting myself from more grief.

Kara 55:35

Mm-hmm.

Carrie Holt 55:35

we try this and it's not successful, am I gonna be faced with, well, he didn't reach the maximum potential I thought that he could, and then I'm gonna have to grieve that. And so There's this measure of, for me at least, self protection I'm a little bit afraid, like just of what this is gonna look like and I'm definitely learning that releasing control is such a huge piece of this.

Kara 56:10

Yes,

Carrie Holt 56:11

Yeah.

Kara 56:12

yes, yes. And I think for me, it's potentially grieving. What I want for him, but also I think because he's articulating so much of what he wants, I think even engaging in that conversation is you said the words earlier. you said, I can't tolerate. And I think we, we come across these feelings, as humans and some of them are almost intolerable for us. And so it's almost like a cat to water where it's like we just shy away and like skedaddle. And I think when I am, as I'm approaching this part of our life, I feel like, ooh, I'm hitting up a against a lot of places that feel almost intolerable in how much grief and how much, Uncertainty there is. And so I think, you know, I'll speak out loud in terms of what that means for me is it will be okay. This is an area where I will be inviting in more support, more and more support therapy, experts, advisors, moms like you that have gone before me, to recognize that I, I really do believe that like we are not intended to do this alone. So. Ha. have I made it clear? I do not have this figured out.

Carrie Holt 57:27

me either.

Kara 57:29

Oh, yes. Okay. So. That is full potential. And you know, it's funny, I mean, you mentioned it's like, well this is the game I think we're all after in terms of like reaching our own full potential of being full of who we are and experiencing the fullness of joy, alongside grief. And I think, you know, it's like maybe we just focus on this for ourselves before we go put it all over our children. I don't know, just an idea.

Carrie Holt 57:57

Yeah,

Kara 57:58

Oh, Carrie, thank you so much for this conversation,

Carrie Holt 58:01

you're welcome.

Kara 58:02

and I don't know, as we close out, is there anything else I know that's on your mind

Carrie Holt 58:06

I will say there's one book that helped me a lot, and it's called Practicing Affirmation,

Kara 58:15

Okay.

Carrie Holt 58:15

and it is from a faith-based perspective, but it talks about just affirming, God's image in other people. And it has helped me a lot. I read it probably, I dunno, seven, eight years ago.

Kara 58:31

Yeah.

Carrie Holt 58:31

It helped wake me up to that striving and being able to rest and say, you know. It's not my job to fix everybody around me. and how can I affirm and be, not just our kids with disabilities, but be our family's biggest cheerleaders and encouragers and all of that.

Kara 58:52

For all people.

Carrie Holt 58:53

All,

Kara 58:53

Awesome. Well, we'll definitely link that in the show notes. We'll make sure we have, probably even just the Amazon link so y'all can go find that. So thank. You for that recommendation. yeah. Isn't it incredible how we get these little like bits of wisdom and goodness that stick with us? So thank you for mentioning that and sharing that. And again, just thank you for sharing who you are with my podcast community and I will encourage anybody, interested to go check out your podcast this unexpected life. And of course we'll have any other way to contact you on the show notes.

Carrie Holt 59:27

Thank you for having me.

Kara 59:29

You're welcome. All right. We'll see you on the next episode.