The Special Needs Mom Podcast
The Special Needs Mom Podcast
When your Story Gets Disrupted: A Rebroadcast
This episode is a rebroadcast of episode 87 that was originally aired May 2022.
This episode I’m talking about what happens when our story gets disrupted. Likely, we all feel this way about diagnosis, a relationship ending or some other trauma in our lives. What narrative do you tell yourself in this special needs mom life when story you thought you were going to have gets disrupted.
“I’m going to be tied down forever. “
“I can’t bring more children into this life.”
“I won’t ever be happy again.”
“I can’t do this.”
“God must not be as good as I thought.”
“This is not how it’s supposed to be.”
When your story gets disrupted you shouldn’t feel like you just need to survive. You have the chance to rewrite your story and recognize that that was how it was supposed to be because it is.
So I ask you, how do you want to know through this? Through being the key word.
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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. all righty. Well, I have a treat for you in this summer season. I gave myself the gift of pulling an episode out of the archive for this week again, and it's a short and sweet episode. Absolutely perfect. For the summer season. And particularly if you find yourself struggling to get to the other side, particularly when school starts again, now clearly no judgment here if that's where you find yourself, I very much understand and have all the compassion in the world for that. And what we do here. Over at the Special Needs Mom podcast is we take the time to pause and reflect and to observe our life and to relate to ourselves as whole and capable and powerful and able to experience life in a way that we like it. Now, you might be scratching your head and be like, wait, what? I don't like this. And yeah, I get it. There's many parts of our life so we don't like, but we. Find balance and we find the things that we do like and that light us up and that the light us and we recognize that all is not lost. So this episode was originally called When Your Story Gets Disrupted. I don't know if we'll keep that title. I kind of like it though, but we'll have to change it a little bit. Probably. It originally aired May 5th. Ooh, happy Cinco de Mayo 2022, and I think I mentioned it in the episode, but we were just about to finish six week protocol of proton beam radiation. That was hard. I was just gonna say it. It was hard. I drove from my house every day down like 45 minutes away to go for like 15 minutes to strap my son in to have his brain radiated every day for six weeks. It was a hard season, so this episode, I think was inspired about kind of. Feeling like something had gone wrong in my life and it wasn't the way it was supposed to be. And so if you ever find yourself thinking that, I think this episode will really be like solve for your soul. And we talk about kind of pushing back against those thoughts and how we do that. So let's go back in time and listen to when your story gets disrupted. Enjoy. I am so glad you're here. Before we get into the episode, I thought I would give a quick little check-in and update on our personal journey, just since I feel like I've sprinkled it in all along the way. And I don't wanna leave y'all hanging. So we are in, we just finished our fourth week of radiation. Well, let me actually step back, let me step back a little longer. So if you're new here at the podcast. Hi, and welcome. I am a mother of four children and my second oldest son is a brain tumor survivor. And actually it's really complicated to say now. So his first brain tumor was in when he was two years old, and that resulted in a cornucopia of special needs. So for many years I was actually. I less focused on the brain cancer issues and really just trying to manage, and support him with the needs that he has given the outcome of his first surgery. And then this last fall, about six months ago, we got the news that he had another tumor, or rather he had regrowth. And it's just been little pesky, or I should say it's done what it probably was expected to do. It's not surprising. Given this type of tumor. But it is unfortunate. He had another surgery in the fall. He had another surgery early this spring, winter, I don't know. And now he is undergoing radiation. So it's, it's a bummer. It sucks real hard. We are in our fourth week of radiation. We have two more to go and I don't really even know what's next After that, we'll do some MRIs, we'll do a lot of praying. We will hope that the part of. His needs of treating the tumor are behind us and then we can, begin to recover. So that's kind of a little snapshot and a lot of people ask how he's doing. He is doing pretty phenomenally actually, in spite of everything. He has days where he doesn't feel good. It's common to have nausea. So he does experience that. But I feel like when I say he's doing phenomenal, it's'cause. This kid's spirit man, he just really amazes me and. I don't even know how he does it, but he has kept a really good spirit the whole way through and he is a joy to be with. No, don't get me wrong. We have our challenges. I don't want to paint this picture that we are just living over in bliss. no. We have the special needs challenges of behavioral and medications and dealing with the doctors and, you know, I don't have to go on. You guys all get it. Anyhow, but with this particular treatment, it's part, it's really amazing. And so that's where we're at. And it's interesting because having done it for four weeks, we have relationships with everybody in the facility. We go every day. And so it's like, oh. It's kind of this weird funk where you're like sad that it's gonna be over. And I know he actually feels the same way. And I know that I've had conversations with people about feeling the same way about leaving the hospital that you want to leave, you don't wanna stay given a choice. You say, no, no thanks, I'll leave. But there's this really, weird dynamic. I wanna do a whole episode on it, on what it feels like to leave behind like the. The familiarity and like the routine and structure you have. So whether it's the hospital or radiation, it's just kind of a little mind twisting. Any who? The episode I wanted to bring to you today is called When Your Story Gets Disrupted. And it's, you know, like many of the episodes, it is fueled by what I'm thinking about, what I'm learning, what I'm struggling with, and so I hope that you connect with it and that it brings you some new things to think about that support you in your life. So at whatever point you became a special needs parent, whether it's at birth. Or whether it was some point along the way, you likely created a new story or series of stories and narratives around what that would mean. It could be something like, I'm gonna be tied down forever if you don't believe your child will ever be independent. Or it could be, I won't ever be happy again. Could be something like, I can't do this. Could be, God must not be as good as I thought he was. Could be something like, this is not how it's supposed to be. That's one of my favorites. Maybe something like, now I have to give up everything I love, or my other children will suffer. Or I can't bring more children into this life and I could go on and on, and it's not likely it's one of these stories or narratives. It's probably a lot of them put together, and you might have your own to add. What I mean by this is these are the things that you're thinking that are wrong with your life because of your story being disrupted. And what I mean by your story being disrupted, I mean. The life that you thought you were going to have. So I'll use myself and as as an example, I thought I was going to have four children and I thought that I was gonna be a stay-at-home mom at one point. That one makes me laugh'cause I don't even want to be, but I thought I did and I thought that we would do backpacking trips as a family and I thought we would travel the world together. And then my story was disrupted. Like I said earlier, my son was diagnosed when he was two, so for us, that was almost 11 years ago. And the things that I thought I would do, the story I thought I would have got disrupted. And this particularly is hard when you don't yet have a new story you like. And so that's kind of what we're gonna look at today. Not in its entirety, but I wanna just point out that it's this resistance to your story being what it is that is likely causing or contributing to much of the suffering and lack of peace that you're experiencing. Like I said, one of my favorites is this is not how it's supposed to be. There's this saying that I actually heard first from my cousin that is so simple, but for me, like really hit me and it's this is your life. You're living it now and again, it's very simple. But I've recognized in hearing that, that I. There was so much of my thought life that was telling me that I was missing out on the life I was supposed to have, that I was missing something, that like things were broken and I couldn't fix them. This little simple sentence, this is your life. You're living it now helps me recognize my life is not out there. It's not something other than what my life is now. And you might be thinking, wow, Cara, I, I got that already. Well, I didn't. So I'm hoping that for some of you, it also just helps recognize that there's these little misleading thoughts. That again, contribute to much of our, our suffering and our maybe even our sadness. And not to say that we don't have an opportunity to grieve what we thought would be. There is certainly space for that, and that's something I'm, I'm significantly working on, but it's really recognizing that there isn't some alternative version of your life that you somehow strayed from. It's not finding something outside of you. It's actually looking at your life and restoring what happened to create a life that you love. And I don't say that love lightly. Like, oh, let's just create a life that we love. Live life, love, laugh. When I say life that you love, it's like. Your beloved pet. I don't know why I thought of this example, but I love my dog. Like I really love her and I don't love everything about her. She jumps on me. She sometimes runs away and embarrassments me in front of my neighbor's. She poops in the backyard, but like I love her. That's what I mean by loving your life. Okay. I don't mean that like everything in your life is going to be lovely. So the question that I wanna offer you that is kind of the, the foundation of this particular episode is, so if this is your life, the one you have, even when things are hard and you might want them to be different, how do you wanna move through this? How do you want to be given that you, for whatever reason were handed the set of circumstances that you were right. And when I say the set of circumstances, that would be the marital status, that would be the diagnosis or diagnosises of your child or children. Those are the things we can't necessarily change. And whatever story we create around those things will be the experience that we have in life. So the question is, how do you wanna move through that? How do you wanna be with those circumstances? Do you wanna hold your breath and get to the other side? Full disclosure, that's my default when things feel really hard and scary for me, I just try to brace kind of the experience I have is almost like trying to get to the other side of the gauntlet with the least amount of bruising. Scarring almost just like I have to bear it, that I, I can't, like that I have to shut my eyes to move through it. And as you can imagine, that requires me to shut down and kind of close off to just get through something. And so the result is you miss a lot of life. You miss, you know, back to the dog analogy, you miss the times where she, you know. Snuggles up to you in a way that just feels so good. So part of moving through this is noticing the beliefs that you have. And some of the beliefs I think that you probably have is that you somehow lost your life along the way, the life that you were supposed to have. So the opportunity is to story or restore. So when your story gets disrupted, we're gonna write a new story. We're going to actually shift the relationship that it got disrupted even, and recognize that that was how it was supposed to be. Because it is, and that's a little philosophical, but it's a way of looking at something that neutralizes whether it's good or bad, and just recognizing it is what it is. Because we can't change it, right? It's really kind of looking at something that has happened and opening up our awareness that we have a choice in how we relate to that. Now, with some things, this is gonna be significantly harder than others, but stay with me. So I wanna give you an example of. What it looks like to story and to create a new relationship with what is So for me, like I shared earlier in the episode, what is right now is my son needs a lot of care because he's undergoing radiation right now. So that requires coordination of a lot of care and appointments, getting him to and fro all those things, and. I happen to be somebody who really likes doing stuff. I really like producing stuff. I like being creative. I like all these things. Evidence. I like doing this podcast. And so oftentimes in a season like I'm in now, it can feel like I'm not able to do the thing I really wanna do. Like it's in the way. And so a thought for me that's really helpful is I don't have anywhere I'm supposed to be. There's nowhere to get to or arrive at. This thought helps me because like I said, by nature, I'm like, I gotta get to the next thing. And I'm not saying this is necessarily a good thing or I have to feel valuable or productive. And so for me, rep presencing me to the belief that there's nowhere I have to go to get to. It's not gonna be better there than here. It's really, really helpful. It allows me just to, to create a place of peace and acceptance of where I'm at now. So, like I said, when we're in this season where maybe it's one of those tougher seasons, I. Where we're not necessarily moving forward or growing or kind of maybe even able to focus on things that we really want to, it's easy to think that we're missing out and that we will be happier when we do get out of this season and get through. But here's the catch, as special needs moms, we know that, that there's not an end to this, that there's not necessarily a place where our child's diagnosis will end. There's no point in which they necessarily will be cured, or if we figure out one thing, we know that there's likely going to be another. So it's very alluring to think that it's gonna be better when we get through something, but it's also a false belief. So back to this question, I wanna invite you to meditate on how do you wanna move through this? And for me, the season that I'm in now, the way I answer that question is it's feeling my grief all the way through. It's not holding my breath, waiting for it to get better. It's being kind to myself. It's resisting the thought that I'm broken and I don't have a, what it takes to parent my child, and it's deepening the trust I have in the process. Deepening the trust that nothing has gone wrong and I'm not missing the life that I was meant to live. So how would you answer that question? And this would be a great journaling prompt if you wanna take that on. And I think what you'll find is that there's likely something that you have been avoiding or holding onto trying to just survive. And if you take a little glance at it, if you, if you open yourself up to again, what the story is that you made after your child's diagnosis, that you'll see an opportunity to restore, to restore it so that no longer it feels like there's a disruption to your life. And you don't necessarily have to just wait for it to be over to get on with your life. Now, I'm not saying it won't still feel hard and you won't have to grieve, but I am saying that it creates an opportunity for hope it, for balancing some of the really hard emotions that we as special needs moms endure. I'm gonna leave you with that for this episode. I would love to hear from you, hear what you took from this. You can always reach out to me on good old Instagram at Kara Riska, and I would also be honored if you would take just a second to rate and review the podcast or share it with your friends or colleagues, and we will see you next week.