The Crushing Weight of Responsibility

This replay from the archives is just as relevant now as it was in 2022. If you’ve ever felt the crushing weight of being the one who holds everything together for your child with disabilities, you’re not alone.

In this episode, I share listener reflections on what feels heaviest—like being the only one who knows every detail, the fear of forgetting meds, or never fully relaxing. I also offer a powerful visual: dragging a massive crate filled with your daily responsibilities, inch by inch.

It’s an invitation to pause, acknowledge your experience, and maybe—just maybe—set down the weight for a moment.

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

Transcript

Kara: 0:05

Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome. Hello and welcome to the Special Needs Mom podcast. One of the questions I often ask people I work with is, what do you need right now? And most of the time people look back at me like, what are you even talking about? And I know I've talked about it here in the podcast, but if you knew here, This is a question that we're often confronted with and it's hard to answer sometimes. It's hard for a lot of different reasons. One of the reasons is because sometimes we don't know what we need. We're not very well practiced at giving ourselves what we need, so it's hard to even know'cause we don't even entertain the thought or question. And it's also hard because sometimes when we identify something that we need. We automatically think that we can't have it or we can't get it. And we have a lot of reasons for that. And I'm starting the conversation with that prompt today because if I were to ask myself that question right now, what do I need right now is I need a break. we're within hours of my children being back at school and. To say that I'm ready would be very accurate, and what I notice is that like on the outside I look fine and actually I even asked one of my kids, Hey, how do you think I'm doing today? I was curious of their experience. I was like, good. And I was like, great.'cause in, in my mind I'm like, I'm not, I'm not great. I am actually can tell because of what it feels like on the inside of my body that I am in desperate need of a break and I don't have anything to give right now. And that is why. This introduction is for a podcast that we pulled from the archives, and it was originally called The Crushing Weight of Responsibility, and I very well might use the same title. We'll see as we, finish the production of the episode, It just talks about the experience a lot of us are having, and I feel like it's kind of appropriate at the end of summer that a lot of us will be feeling it right now. And I know, I know that after I get a break, after I tend to myself in all the ways that I need tending. I will feel much better. But I also know right now that it's not a time to push or to produce. This is very much work that I have to be able to be spilling over from a full cup and not try to do it from an empty cup. So enjoy the episode. It's originally from, early October, the 6th of October, 2022. Again, it was called the Crushing Weight of Responsibility. And with that, enjoy today's episode is about the weight of responsibility. It's gonna be a really good episode. What's really special about this episode is that I have a lot of comments from listeners and or people in my community over on Instagram. The answers really took me back. Mostly because of the quantity they came in. You know how it is on Instagram. Sometimes you get a lot of people responding, sometimes you don't. And this was like, whoa. Clearly my people have something to say about this. This whole episode actually came about because I asked somebody that's in my my world, I said, Hey, how's it going? And she was like, I'm just really exhausted from. The weight of this responsibility. I thought, oh, wow, that's interesting. The way that she described it really stood out to me and I deeply resonated with them. Like, yeah, yeah, like we carry a lot. And so I asked my Instagram community and my Facebook community for this podcast, so this is a great chance to say, Hey, wait, I didn't know about that. Yes, there'll be a link on the show notes here, and you can join. Based around the conversations we have here in the podcast over on Facebook. So it's a chance that I actually get to interact with you, and I would be honored if you would come over and join. It's free. Okay, so I wanna highlight some of the responses. I'm not gonna read them all because there was quite a few and there's a lot of repetition and so I'm just gonna highlight some of the repeating themes. So one of them, so this is answering the question of like what feels heavy about parenting your children's disabilities and medical complexities. So one of them was knowing that you're the only one who knows everything about everything to do with your child. Another is, I thought this was so interesting, the thought of being judged. That you aren't doing enough at each and every appointment. I mean, I think you can feel the crushing weight of constantly having to prove you're enough at every stinking appointment. Another one, we know there's a lot of appointments too, right? Another one is always waiting for the next emergency. Never can relax. I described to one of my friends actually, and she really helped. She's a, she's not a, a mom of a child who has a disability or medical complexity. However, she's a really good friend. So she, I don't know how we got in this conversation, but I share with her this image that I had of what the experience is like, and I have this image of a frozen lake, and it's like walking my life is like walking across a frozen lake because I know it's gonna crack. I just don't know when and where. I dunno how far from shore I'm gonna be, but that's actually the life I think. I mean, we all are living with uncertainty. There's no question every human has no certainty. However, I do think that image for me speaks to the distinctly different experience of parenting a child with a very complex medical experience, medical life. Okay, getting to another one. There's no end date. It's forever. And if it does end, then heartbreak. And this actually was the most common response, speaking to the unending this of the needs of our children and eventually our adult children. I guess another one. There's always something to research. Are we getting the best care? Are there other treatments? Doctors, and then of course the financial impact of medical insurance. Another one is, my daughter is nonverbal. The constant guessing what she wants and needs is exhausting. Yeah. Right. And I don't share that experience, but I think we can relate to the. Constant not knowing what the best thing for your child is. Think that's something that we can all resonate with yours, whoever shared that. Thank you. Just so happens to be because your daughter's not able to speak to advocate for herself. And the last one is, I've struggled with how exhausting it is to pack for vacations. We have family out of state, so we try to see them as frequently as possible. Now the organization and packing of the medical stuff is overwhelming, unlike most items that you can just purchase at your destination. If they're forgotten, if we miss something, it can be a major ordeal. Funny enough, I can speak to this because there was that one time that my husband and and family, we drove five hours to see our family and the bag that we had packed. With all of the medications got left on the counter. So fortunately, you know, always prepared. I always have meds in my purse, but you know, it was like a day supply, so it gave us a little bit of wiggle room, but it was. It was awful. Oh, and also during that time, my son, uh, was having a little bit of a health issue, so he needed more of his medication than I had on hand. So that was a real treat. Anyhow, so that's just to highlight the frequency at which these heavy burdens, I'm gonna use the word burden as we approach these heavy burdens. It's, it's frequent, it's daily, it's lifelong for many of us. So, what do I wanna say about this? I mean, I honestly could do like 25 episodes from each and every one of the comments I got back. I will probably do that at some point. However, the thing that I feel most urgently called to share is speaking to actually allowing space to feel. The impact of the weight, and something I notice from personal observation of mothers, both of myself and others, is that we never put down that weight. We don't relate to having a safe place for us to be held the way that we hold. Other people around us, and I think it's really common for mothers to hold it all. We protect our children, so this is siblings and our child that has disabilities and medical complexities, and we stay composed for them. We are constantly advocating for them, for all of them. And we're more likely not, this is not an always but more likely playing a bigger role in managing our child's care than the child's father. And so we're so focused on the mission that we don't make space for our experience. I want you to picture somebody that has like a a a box crate. You know, like you get like when anything is shipped, right? And it comes with like all that like cellophane around it. It's like this big old immovable thing. Unless you have like a forklift and I want you to like, you know, picture having ropes or straps to that and having them over your back to where you're leaning into all that you can to pull that weight along and you move it forward inch by inch. But you're so focused at looking ahead and maybe even you're so focused at like. Bearing down so that you can pull this weight that you are lost in the process. If you picture that the idea of stopping to care for yourself kind of is laughable, right? You're like, Kara, like I'm moving the crate box ahead. I have two more inches to go. Okay. So this is, I think, just really common and I wanna normalize that experience. I. It can also feel like our experience, like I pointed to it, can feel like it's in the way of the mission. Like it's either the mission E, either we support our children in everything that they need and support our other relationships and our career and all those things, or we support ourselves. And the other piece, I think that stops us. Is I think some of us think, what's the point? What's the point of stopping to think about my experience? Or to even worse feel my experience because one, it's gonna feel horrible and two, it doesn't change anything, Kara, it actually just makes me feel worse and I won't disacknowledge that. Yeah, it's actually potentially. Going to feel badly, but I would wholeheartedly invite you to reconsider that there's no value in it, and we won't go into that a lot today, but reach out to me if you're curious about that. So the other thing I wanna say about this is the value of being validated and having your experience matter. And I think most of us, I'd say almost all of us, point to this missing by saying nobody understands. I feel alone. Nobody gets it. Like it would be impossible for you to understand this unless you're right here in my shoes. And so I think most of us turn toward wanting and seeking that validation from others, and then it doesn't come. In the way that actually meets our need. But what we accidentally skipped over is the opportunity to validate and self-knowledge yourself. And some of you might even be like, wait, what, what, what? Self-knowledge, self validate. Like, why, why would I do that? And I have another picture for you. I want you to consider a room. You have a key and there's a locked door, and on the interior of this locked room is a room full of people that see you, that hear you, that just can hold space for you without trying to fix you or change you, and that you key the access point for you to be able to be in that room. Is your ability to self-knowledge and validate your own story, why? It's like the thing that turns on your listening. It's like the activation key that if you can't self-knowledge your yourself, like if you can't actually have a interior conversation where you are saying. You are amazing. I love you. You have done such a hard thing and you're still standing. I'm so proud of you. If you can't have that conversation with yourself in a way that it's genuine and received by yourself, then you're not gonna be able to hear it from anybody else. So what's interesting is many of us are like, nobody understands. We're looking outside, and I would say, you're not right about that. I think more people understand or want to hear than you can see, than you can hear. And so, yeah, you're right. I'm actually turning this back on us. Not in a place of blame or like, oh, it's your fault that you feel alone. No, no, no, no, no. That's not it. But we're actually taking responsibility for the experience that we want, and the experience we want is to not feel alone. Okay, so when we skip over this acknowledgement, the validation of what it's like to hold this weight, it's just like having no key. And so what I want you to consider is I want you to consider the opportunity of actually making space for yourself to process. And specifically the value of actually taking a step aside, putting down those ropes when you're pulling those crate, going back to the illustration from before and just taking some space and time and energy to look at what you're doing and look at yourself in awe. I think one of the reasons we skip over this, I think, is because there's probably some pretty big feelings down in there. That you've been stuffing in and it feels scary for ourselves. And gosh, I feel like some cases like, um, that would scare people around me if they saw what was really tucked inside here. And so the invitation I have is actually, like I said, to create this space for yourself. Yes, it can be inside of a community. And what's great about that, this is actually a unplanned but timely plug for the coaching program that I have that's just starting, that just started this week. Now when you're listening to this episode. So the beautiful thing about a community like this is actually, it has built in accountability. So for most of us, my guess is not like, you know, what am I gonna do today? You know, I think I'm gonna go make some space to feel some really hard, big emotions that I'm. I haven't felt in like five years. I'm, I'm thinking probably not, that's probably not your conversation. But when you actually know, hey, I'm gonna be meeting at 10 o'clock with a community that actually totally gets it, maybe I'm willing to engage with some of those feelings or experiences that I've just been skipping over'cause I've been so focused on getting through. So that's the value of community. And it can also be some individual work. It can be kind of actually just taking some time away. It can be going away for a weekend. It can be going to therapy. This is a great way to actually create some space to let down some of the load that you are carrying daily. It can be going for a walk in the evening. It can be going in your closet. There's, you see how there's no one or right way to do this. There's many, many ways So. In closing, I just wanna reiterate what this can look like is really stepping back from what I'm calling the mission and just being in awe of yourself to appreciate the things that you do, all the ways that you've surprised yourself. And my guess is that you probably, if you're listening to this, you probably have not done this deeply in a very long time. And if you actually take a step away to really lean in to acknowledging yourself. Then you're gonna be surprised like how much you see that you just weren't able to see prior to this intentionality. So yes, it's heavy and I think rather than trying to fix the heavy and make it lighter, what I wanna do actually is acknowledge this heavy, acknowledge this load that we are carrying and let's not carry it on our own. We'll see you on the next episode. I.