The Emotional Cycle of a Special Needs Mom

This episode explores the emotional stages many special needs moms move through, from survival and self-sacrifice to restoration and possibility. Kara shares a personal moment of heartbreak and why community changes everything.

Read the full show notes here.

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

Transcript

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.

1:13

Hello and welcome to the Special Needs Mom podcast. As I was saying that, I was just thinking about a listener that I met out there in the wild, and she was like, you look really familiar. And I, how I made some guesses on how we knew each other. And she was like, no, no, that's not it. And then I said, the Special Needs Mom podcast. And she said, yes. And so I said hello and welcome. Like, I kind of always do. I thought it was kind of funny. anyhow. Welcome Jen. I'm glad you're here. And, let's see. what do I wanna talk about today? well I'm feeling a little somber, maybe somber is not the right word, but I had an experience today that absolutely broke my heart, and you can still tell. Even as I think about it and talk about it, it still moves me and it involved me witnessing my son and another disabled child being left behind in a way that just, it just crushed me. It wasn't overt. It wasn't like something blatant, it was just because of the way that this particular moment landed on me. It just hit me and I couldn't contain myself. I had to abort mission on the thing that I had been planning to do and really just give space to the emotion that was bubbling up, which looked like me going to my car and crying my little heart out. And the thing I guess I wanna share here is that it just really hurts sometimes. It really hurts to be the frontline person for our children, for these children, that however we classify them, whether we say we're a medical mom or special needs mom, or disability mom or cancer mom. We're the frontline person. The common thread there is we're the mom and we're the ones fielding the calls from school, watching the un unpredictable and uncontrollable seizures, hearing the comments from our own children who don't wanna be disabled. And who want to be like everybody else, who want to participate like everybody else. We're the moms trying to paint a picture of hope for our children who are wondering about their futures and asking about their futures. Meanwhile, we're terrified that we won't be able to get them into the program that's a good fit for them, or that if we do, they could get kicked out of the program that we thought would be a good fit. We're the front lines. Giving the life critical medications and respiratory support, daily dialysis, and a mom's work is hard. We all know this, but the thing I really wanted to bring attention to today is this aspect of being a caregiving mom when the day-to-day life. It is a life of heartbreak as we watch what our children have to experience, and then of course we experience it alongside them. A mom reached out to me on Instagram who is a nurse and also a parent of a child with a rare condition, and she sounds like she's leading, some trainings or some opportunities in her department. And she asked for any feedback or insight that I have that I would, you know, want her to include as she educated the other nurses. And the thing that came to my mind, I didn't think for hours on it, but the thing that came to my mind is to stay connected to the humanity of their patients. I mean, one thing that, you know, medical providers do, to be able to. Handle case after case, after case is kind of separate the emotions from the work that they're doing. And I understand that, but that's also why the experience of being, the patient or the patient's advocate can often feel so cold and so clinical. As mother caregivers, we are required to do all of the medical, all of the behavioral, and all of everything in between. And bring our hearts and open our hearts to the love and to the fear that it takes to be the mothers of these children. And that's a lot to marry together and to hold space for. And again, that's kind of why I wanted to talk about this today, is really to acknowledge this part of you, this part of us that we carry on a day-to-day basis. And maybe. Or maybe not give it attention. I would say that this is too much to carry on our own, the weight that we can sometimes feel and as caregivers. We need to be held to. Now, this is often hard as a grown woman. that's not really the model that our society has. And I wanna paint two scenarios, two simple scenarios for you. And the first is scenario A. You are headed into an impossible mission. One that has never been done before. There is no manual and it is life critical and you are alone. So that's scenario A, scenario B, similar, you're going into a impossible mission when that it has never been done before. There is no manual. It's life critical and you are there with women alongside you who are on the very same mission. There's an army of you. If you had a choice between scenario A and scenario B, which would you choose? I mean. I get it. It's kind of an obvious leading question. I'm biased against scenario B, but I want you to think about it actually kind of comparing A and B. Many of us feel like we're living scenario B, even our husbands great as they are, don't have the capacity to carry all the parts and pieces that we as women and mothers, need to be held in. That would be actually a, a too big of a job, I think, for any one person. So that's a lot of pressure that we could put on these husbands of ours. Kind of going back to scenario A and scenario B. Yeah, even scenario B, there's gonna be heartbreak. There's gonna be toil, we're gonna come up against challenges, fears, and all the things. But knowing you have a posse, a group who not only understands you, but is for you. That makes a critical difference. It's so powerful if you think about it, like even if you like visualize the two different situations, one where you're in this place of impossibility and you are truly alone, no one to speak to, no one to confide in, no one to confess to, opposed to being surrounded with people that you feel like get you are for you. can give you that at a girl can just even hold space for you and not try to fix you or change you. it's kind of similar. It's a little different, but it does make me think of a experience I had in a recent IEP meeting. This particular meeting was strongly focused on behavior. It's a big part of our. sent our picture and the behaviorist was presenting her findings from a newly, completed FBA, which is a functional behavior assessment for anybody that has not had the pleasure. and she nailed it. She did a phenomenal job and it was the first time I heard a school report and thought she gets it. I didn't feel defensive or like I had to try to explain it. Oh, I felt so seen and I, I felt so validated as the person that feels like I do understand my child and I need people to understand him to then appropriately support him. And so the experience I had was that I felt like somebody had my back and it felt great, but more than that, it's like, because I knew that she understood the problem or like the scenario, I didn't have to Try to justify or explain. I just was able to be receptive to the solutions that she was brainstorming because like she had that baseline understanding of like, we were already on the same team. So I felt like she really got it and that felt amazing. And I wanna switch gears a little bit to talk about something that I haven't talked about. I don't know. I don't know when I've talked about it, but I used to talk about it a little bit more frequently, and it is, Something I developed over the years that I've run this podcast and coached moms and talked to moms like you and me, and I noticed a pattern emerge and I, I named the pattern, I, I call it the evolution of a special needs mom. And I want you to make sure you picture it as a circle, maybe even a circle that kind of like loops back and forth upon itself. So maybe like consecutive circles, and it is a very simplified version, but I know it can be very validating to explain the process that you find yourself on. And I'll briefly explain the different stages of the evolution. the start is, and you'll see I love alliteration, stunt survival. This is when everything's new. You quite literally are learning the language of the diagnosis or the new diagnosis. Kind of going back to like the, this is not a nice, neat, A to B2C. This is, Kind of consider it more of a dance, but we find ourselves in these seasons of survival. survival is the focus, right? And so this is the time where it's like I wouldn't expect anybody to be doing, anything but surviving. In this stage and it leads. Eventually you stabilize and kind of adapt a little bit to your new you. You get through the critical pieces, get the medical care or the behavioral support that you need, and then we move on to the next set of s's. Stabilized yet self-sacrificing. this is where us moms, we go all in. We give it all. We dig deep, we go to solve. We go to manage. We go to contain. And many of us have had the privilege of. Prior success from this digging deep and working hard and kind of being a little smart, a little bright, you generally find yourself as somebody that you'd say like, I am a high achieving person. I've been successful in my career and everything I've ever done generally works out okay when I use those skills, Until you come across the situations and circumstances that you find yourself in as a special needs mom, and rather than finding the success or kind of finding your way out of the struggle, you find yourself depleted, exhausted, maybe even leaning already into a little bit of resentment. Resentment is one of those things that, it starts to creep up at this stage and maybe persist through other stages. And the self-sacrificing feature of this is that, because you are mother, your entire focus is that of your child's and your, by default, not intentionally, but by default are neglecting yourself and it feels like you have to out of survival. this goes on over time, and you then find yourself at the next stage, which I call alone and afraid all the self-sacrificing, all the self abandonment you use to survive the last two stages has you in this place where now you don't recognize yourself anymore. You certainly don't have the life you thought you would have, and. You have these moments of dread and fear and hopelessness and helplessness and the powerlessness starts to seek in. So you feel, this is why it's called alone and afraid you didn't, you don't have your community that you started with'cause you're now not necessarily belonging with them. They don't understand. But you haven't yet found that community that does. And so you find yourself alone and maybe even your partner or your spouse doesn't fully get you, or maybe they do get you, but due to their own coping, isn't available for you in the way that you need support. And so I know it, don't worry, it gets better. But there's a critical piece. Consider it like this is like the spark. There's a critical piece between this stage and the next, and I call it the rebellion. And the rebellion is this, maybe even if it's just a whisper, but it's the rejection of the resignation that you have to continue on this. I'll call it a dark path that you've been on. The rebellion is a shift that has, you say, but what if or how can I. And it's repointing yourself. It's reclaiming, and this is essentially the next stage. It's, it's that spark that triggers the small actions, the small curiosities, the small shifts to the stage that I call the restoration. And the restoration, again, is not a neat and tidy stage. it's pretty messy actually because also, we'll dip back into all the previous stages as part of restoration. And that does not mean you're doing it wrong. it just means it's part of the plan. And so this intentional rebuilding from the rubble, we're gonna take what's left of your old life that you wanna keep, and we're going to rebuild it in a way that honors your new life. But also taps back into the reconnection and exploration of who you are. And the restoration phase opens up to the next stage, which I call member. I love the alliteration, power, peace, and possibility. And don't get me wrong, it's not a destination. but rather a way of being that you bring to all of the other stages as you dip in and out of all of them. And I know when I, I even have like a little bit of resistance of calling it power, peace, and possibility.'cause it sounds a little, like rainbow at the end of the, you know, the, we're gonna fly on our unicorns off onto the rainbow and live happily ever after. And that's why I wanna emphasize that it's not a destination, it's not a place we're gonna get to and then never go back to the others. It's this experience of who you are, and how you are, in all of the other stages that opens yourself more wholly to who you are. and opens space for all the fear and all the heartbreak, and all the joys and all the beauty that exist and will exist as a part of your life. It's kind of the development of relating to yourself as whole, capable and powerful. And so as we start to wind down a little bit, I'm curious to hear what stage you identify with the most. My guess, my guess is that many of you relate to, Maybe even being in between stabilized self-sacrificing and alone and afraid.'cause again, they're not like neat and tidy columns. We can kind of dip in and out of them, maybe different weeks for different stages. I don't know. And these are the stages. The reason I know this is because these are the stages that I created Path to Peace coaching community for. it's the place designed to meet you, to essentially, hold you, as you step into the restoration. It's like the container that's created as a safe place for you to explore what it looks like for you to rebuild, what it looks like for you to develop the coping strategies and the, depth of experience of who you are in relationship to what is happening in your life. I mean, going back to the scenarios I painted, it's the scenario B, it's doing. This life, this heartbreaking caregiving life with a group of women who are here on this journey with you. And so why am I talking about this now? well, it's because I really want you to know that now is the time, because in a few short days, I will be opening the doors of Pathway to Peace Coaching Community. Again, I only open it between three and four times a year. And I'd love for you to think about joining us to consider. What would it be like to actually have a space that is designed just for you, just for you to explore the hurts, the heartbreaks, the hope, the funny, I mean, we have to balance it out ladies. We've gotta share those stories that only us would, really get and to be able to laugh at, you know?'cause we have to do that part too. so that's why I'm sharing it with you. So I want you to, go sign up for the wait list and this way you will be on my email list and you will not, miss any of the information on where to sign up and how to sign up and all those good things. And you can find the wait list. Sign up on the show notes of this episode. And I do really hope that you'll explore and even if you decide, okay, maybe, maybe here's the thing, maybe you are in a season that you're like, actually I'm, I'm surviving right now. I feel like I don't have any space to do this. I wanna say, actually that's okay. There's actually a mom who, who was part of our community and she had to step out because she was being called back to a season of survival. And I think it's, important to acknowledge that's okay too. So if you're listening to this and you're like, Kara, maybe one day I'm just not there yet, you're still welcome here. I will continue to invite you and trust that when you. Feel like you have the capacity to even say yes in a small way that we'll be here for you. Okay. That feels like a good place to wrap up. Thank you for hearing my heartbreak and giving me a space, to be with this community. And even in, you know, yes, I'm alone in my office recording, not actually speaking to any one person, but to the collective of you. But it gives me a space and an outlet for myself as I process. All the things we're talking about, and so with that, we'll see you on the next episode.