A Suddenly Brave Together Episode with Kari Morin

Hello Brave Friends!

In this special episode, hosts Jessica Patay and Dr. Zoe come together for a deeply personal and heartfelt conversation centered around Suddenly Brave Together, the book co-authored by Jessica Patay, Dr. Zoe, and Kari Morin.

This episode explores the emotional journey so many parents experience when life changes unexpectedly—whether through a diagnosis, a medical challenge, or a shift in what we imagined for our families. Jessica shares the inspiration behind the book and the meaning of becoming “suddenly brave”—that moment when you are called to show up in ways you never anticipated.

Together, Jessica and Zoe reflect on the complexity of navigating grief, uncertainty, and resilience, while also making space for hope, healing, and connection. They discuss the importance of moving away from a “fix-it” mindset and instead embracing the present moment, honoring both the heartbreak and the beauty that can coexist in this journey.

This conversation also highlights the power of community. Through shared stories and vulnerability, parents can find connection, validation, and the reminder that they are not alone. Whether you are at the beginning of your journey or years into it, this episode offers compassion, perspective, and encouragement.

You are not broken—you are becoming.

Find more about Kari Morin here. 

Find more about We Are Brave Together’s second book Suddenly Brave Together here. 

Find more about We Are Brave Together’s first book Becoming Brave Together here. 

Find more information about Licensed Psychotherapist, Dr. Zoe Shaw here. 

Find Dr. Zoe’s book, Stronger in the Difficult Places: Heal Your Relationship with Yourself by Untangling Complex Shame

Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. 

JOIN the international community of We Are Brave Together here. 

Donate to support all of We Are Brave Together's programs and offerings here. 

Can’t get enough of the Brave Together Podcast? Follow us on Instagram , Facebook and Youtube. 

Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.org 

If you have any topic requests or if you would like to share a story, leave us a message here.

Please leave a review and rating today! We thank you in advance!

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Transcript

SPEAKER_02 0:00

Welcome to Brave Together Podcast, an empowering resource for the parents of children with disabilities, neurodivergence, and all unique needs.

SPEAKER_00 0:13

And that's also a relief. Like I have no power over this, so I can just be compassionate around it. But I think we subconsciously stress thinking we should have some power to mitigate that in some way. It's a subconscious, like maternal instinct. And it's like I can't protect any of us from any of this. All I can do is be very loving and very gentle and make sure that they know that anything they're feeling about any of this is okay.

SPEAKER_02 0:44

Hi, brave friends. I'm Jessica Bate, founder of We Are Brave Together, author and mom to a child with disabilities, an adult child with disabilities. And I'm here with my co-host, Dr. Zoe Sha, licensed psychotherapist, author, speaker, and fellow brave mom. Today's episode is a special one. We're diving into Suddenly Brave Together, the book I co-authored with 31 other women, including Carrie Morin, created from the shared experiences of parents navigating unexpected diagnoses, medical challenges, and the moments that change everything. In this conversation, Zoe, who is also part of Suddenly Brave Together, we reflect on what it truly means to become suddenly brave, how quickly life can shift, and how we are called to rise, often without preparation, into a version of ourselves we never anticipated. We talk about grief, resilience, and the emotional complexity of parenting children with both visible and invisible needs. And we also talk about something we believe deeply in, the power of community. Because no one is meant to do this alone. If you're walking through a season that feels overwhelming or uncertain, we hope this episode reminds you that you are not broken, you are supported, you are seen, and you are not alone. All right, everyone. We are here to talk about Suddenly Brave Together. I'm so excited to have this conversation. And I welcome you, Carrie, to the podcast. And of course, always Dr. Zoe. Both Dr. Zoe and Carrie contributed to our second book. Our first book was Becoming Brave Together. If you are not aware, check it out. Go to Amazon and take a look at that. And then this is our second book full of 30 letters. So we have 30 writers contributing. And the intended audience is for newer, newer moms, but honestly, any parent caregiver is going to benefit from reading these letters. So welcome, welcome, welcome. It's good to be together.

SPEAKER_00 2:50

Thank you. It's good to be here.

SPEAKER_02 2:52

I'm going to ask each of you what does the title Suddenly Brave Together mean to you? And how do you feel like that captures what we're trying to do with the book?

SPEAKER_01 3:04

I love the title because that's exactly how I felt when I was in the NICU. I felt like I had been hit by a train. It was so sudden that my entire life changed before my eyes. And I didn't feel brave. I certainly wasn't thinking about being brave, but I quickly met some people online and found other mamas who were starting, you know, or on a little further on the journey and gave me a little bit of hope. And so I love the title because that's how it felt for me. It was sudden, so sudden. And then I met all of these other brave mamas together.

SPEAKER_00 3:39

What about you, Carrie? So you know that my chapter is a little bit about how I didn't get one clear diagnosis ever, really. So there were many moments of sudden bravery, you know, when you I it the best way I can talk about it is when I would share things and process it, share things with like, you know, a friend or my husband. I always in the back of my mind, and I'm sure you can relate to this in some different way, you know, but like at least like the the thing we we learn not to do, but like uh at least it's not that bad yet, right? Like it's not as bad as it, like it's yeah, not even yet. At least we don't have it that bad. And then that thing would happen. Like, you know, like those were being kind of eased, I don't know, or sort of tumbled into different levels of that. And each time took an like a a jolt of you gotta be brave because what else can you be? Of you know, his two siblings also looking at you. And um, so there's just for for me, I suddenly brave several times is how it hits me.

SPEAKER_02 4:40

Yes, yes. I think it's definitely just throughout the lifetime of our children and the different things that they go through in the different seasons, we have to suddenly shift again.

SPEAKER_01 4:51

Yeah.

SPEAKER_02 4:52

We have to suddenly rise up again. We have to become even more resilient or strong or resourceful or whatever we have to be with the current crisis or situation.

unknown 5:04

Yeah.

SPEAKER_01 5:05

Yeah.

SPEAKER_02 5:06

What what it makes me think of is I mean, how I mean, some are on a long diagnostic odyssey like Carrie, like what you've been through. Um, Zoe and I, you know, we remember that moment of diagnosis, that phone call, or when the doctor walks in, or the whatever it was, how we were notified of a diagnosis. And it's like there's this before and then there's this after, right? And then just you'll never forget you you are not the same person, you're not living the same life as before that.

SPEAKER_01 5:35

Yeah. Carrie, can you share your child's diagnosis?

SPEAKER_00 5:39

Yeah. Um, there's there's it's a cluster of things, like so many, but um, he has a rare genetic mutation. We didn't discover this for a long time, um, called SP Tan 1. And that uh can really look different across the board. And so Griffin, you know, has his own unique formula or you know, set of circumstances with that that has looked like a very rare form of epilepsy that's progressed over time, differ different types of seizures with different stages of development. So it started off like, oh, he's got absent seizures, he's got epilepsy. That's all we knew. But he also wasn't walking right away and he had low tone. And so, yeah, so that there was as we were doing that, you know, he was diagnosed with mild intellectual disability and some learning, pretty, you know, pretty um debilitating learning disabilities, but it we were accommodating and figuring it out all along the way, trying to put the puzzle pieces together. And I I think I say in my chapter, I'm pretty sure, and and I say this with such um gentle respect that I envied, I don't know why, but I envied a specific diagnosis. Like I wish someone could have told me right away, like this is what you're dealing with, because then I constantly felt behind. But I know that that but I just think that's human nature. We always want something to follow, but even then it's not like oh, that's that's some great club and and you know, with a perfect set of handbooks, you know.

SPEAKER_03 7:08

Yeah.

SPEAKER_00 7:09

And because of that, because of the drop seizures, which is another type of seizure he has, he has um, you know, some traumatic brain injury as well.

SPEAKER_01 7:18

Yes. Okay. Thank you for sharing that. I know that that feeling of envy, whether it's uh, you know, typically developing child, I remember I kind of envied people who had children whose diagnoses were visible as opposed to invisible because there's all of that explaining and questioning even your reality when your child has an invisible diagnosis.

SPEAKER_00 7:46

Oh yeah. Yes, that that just hit me in my core. I know that feeling.

SPEAKER_02 7:53

I was also just thinking for our our our listeners, this book has 30 contributing writers or authors, we all don't know each other. And so we might have read each other's chapter and we might have not, actually, because we everyone didn't have access to everyone's final letter until now. And so if our if our writers have received their books, which they probably have by the time this airs, they will be reading each other's stories, but everybody doesn't know each other. And I wish everybody knew each other. I wish we all lived in, you know, Southern California and we could get together once a month. Um it'd be lovely. But we have writers all over the country, we have writers outside the United States and Canada and Sri Lanka. So it's pretty remarkable to have such a a variety and such an array of beautiful moms and beautiful stories.

SPEAKER_00 8:43

It really is. I just got it because I I I just got it and I was wanting to read every single one. And I just thought of that, like, oh wow, I wish I had this at the time.

SPEAKER_01 8:54

I know, but what a resource. I had nothing like that. I couldn't imagine if someone had just plopped that into my hands and I could read the stories. Yeah, so true.

SPEAKER_02 9:05

I remember a book called Nobody's Perfect by Nancy Miller, I think. And I think she might have been a therapist or a social worker. And that was a resource that that I had, but it was more it was not, it wasn't stories. It was there was no storytelling. Yeah. But that's why this book, I you know, I want this book for every mom in their journey, on their journey, new or not new for sure. Um, what do you hope that a reader feels, you know, when they read each letter or even when they finish the book?

SPEAKER_00 9:41

I I mean I kind of feel this way about all women, but especially caregiver moms and moms in these situations. I I hope they feel less alone. I hope they feel a lot less hard on themselves. Just, you know, the the amount of times I've thought, God, I wish he had a better mom, a smarter mom. Like the the the those inner the inner dialogue things that you go through when you wish like that you you could figure something out. When there's, you know, when you're really like just learning how to live with it. Um for anyone who's feeling bad about that, you know, to just feel less alone and to realize, you know, that's that's not even, you know, that that's not even um it. What what it is is you what you're going through is normal, what you're going through is scary, you're a badass. And and like feeling bad about every little reaction you had isn't gonna help anyone. So feeling connected to everyone, other moms will be.

SPEAKER_02 10:42

I needed to hear that, Carrie. Like just every time I overreacted or just got so anxious and worked up and you know verbally lashed out just out of my own fear and my own worry when Ryan was acting out like a yeah, I I needed somebody to tell me that all your feelings are valid and also take care of your own anxiety in the midst of this.

SPEAKER_01 11:09

Yeah. I hope that a mom reading it feels very sane because I know that there were so many thoughts that I had that I didn't feel I even had permission to have or feel, and there was no way that I nowhere that I could take them. And so I tried to, in my letter, say the real things that I was feeling the the the fear, the shame, the I don't want to do this, all of it, you know. Um, so that a m another mom who is feeling that way knows okay, it's okay that I'm feeling this way. There's nothing wrong with me, it doesn't make me a bad mom. And if another mom can do it and she's further ahead than I am, then I can do it too. Very true.

SPEAKER_02 11:57

Very true. Yeah, I think you know, that's why I wanted we are brave together so that we could draw strength from each other, we could share our stories with each other, we could, you know, feel like, oh, she feels that way, she thinks that way, she's been through that, she had somebody say that or do that.

SPEAKER_01 12:15

Yes.

SPEAKER_02 12:16

Oh, she has family and friends who don't understand, oh, you've been through grief again and again. You just just feeling so seen and so understood because we do feel tucked away and hidden. Our our busy, you know, medical lives or our kids who are behaviorally fragile or medically fragile, you know, it does it does shut down our life some and we do get stuck at home. And um and not to mention that, you know, our culture and society still doesn't view disability in the way that it should. So we yeah, we feel very marginalized. So yeah, our first book and this book, I just want every parent reading it to feel seen. I love how you said that, Zoe. Yeah.

SPEAKER_00 13:06

I have this feeling too that I would love all like um other people in our community to read it too, to understand it. You know, I I always have this feeling of don't treat me differently, but also give me the give me some grace. Like it's just this constant, constant, like I don't want I want you to like, you know, don't don't make don't assume that I can't invite me, but if I can't, keep inviting me and give me some grace.

SPEAKER_02 13:33

Yes, yes. Yeah, it's true. It's true. Don't give up on me. Yeah, keep inviting me, even if half the time or most of the time I can't go.

SPEAKER_00 13:44

And just FYI, it's it's it's hard.

SPEAKER_02 13:47

Right. It's really, really hard. Right. Yeah. It's like at the same time that we don't want to just always hear, oh, you're so strong and I don't know how you do it. But then you also want, you know, people to acknowledge that, okay, caregiving on top of parenting, which is already really challenging and difficult and beautiful, is a lot.

SPEAKER_01 14:07

It's a lot. Yeah. It's hard in a way that they could never imagine. And if they could just accept that that knowledge and hold space for you, that would be wonderful. That would be wonderful.

SPEAKER_02 14:20

Just and and just saying that, Zoe, like if someone were to say, Zoe, I don't I don't I have no idea what you go through as a caregiving mom. But I do know that I care about you and I want to be here for you. Like just acknowledging I I don't have any idea what your life is like, but I love you and I care for you and I want to be here for you. Like that it's everything.

SPEAKER_00 14:43

It's a guess everything. Yeah, it is. That feels instantly safe.

SPEAKER_02 14:48

It does and loved.

SPEAKER_00 14:50

And loved. Yeah.

SPEAKER_02 14:52

Yeah. And also like thank you that you had I don't know, insight and self-awareness and wisdom to be able to say that perspective to be able to say that.

SPEAKER_01 15:06

Has anyone ever had someone say that to you?

SPEAKER_02 15:10

The I I had it um from a girlfriend from one of my best friends, maybe 10 years ago by now, probably longer. She said, I know enough to know I have no idea what you're going through, Jess. Oh wow. But I love you and I care for you and I want to walk with you. And I have shared that again and again and again. And that's something that all of us can use when we have friends or family in crisis that we've never been through, you know.

SPEAKER_00 15:42

Yeah. I definitely am blessed because I'm in the world of coaches, you know, and um therapists and things. So I've had some good friends say exactly that, which is great. Um, and I don't blame the friends and family who don't, who think they know, and they'll be like, well, he looks great, you know, like you said, the invisible. Yeah. Um, because I realize that's their love and their fear and their grief for him, too. So, you know, I I'm just grateful I have people who know how to say that. That's that's really great. Just no idea. I'm sure it's hard as hell, and I'm here.

SPEAKER_03 16:17

Yeah.

SPEAKER_02 16:20

Did writing your letter crack you open in some way or change something for you or bring any aha or kind of revelation as you thought about this, wrote about it, poured your heart out, were so raw and honest.

SPEAKER_01 16:40

You know, I I can't say it cracked me open because I write so much. Um so I'm I'm often getting cracked open. I think though, what it did do is it gave me a perspective. Even being invited to write this letter reminded me of how far I've come. And so writing the letter really just created joy and some just kind of um healthy pride. Like, look at look at how far I've come. Now I can help other people. I'm in that space now because for many, many, many years I was just revived. I wasn't helping anybody, I didn't have any anything to give to anybody else. And so I think for me it was just a just a little a wonderful recognition of where I am now and I can help other moms in that situation where I was. Yeah, so true.

SPEAKER_00 17:36

So true. Carrie? Uh yeah, sorry. I I was just I was taking that in and kind of just feeling overwhelmed because I do I do write a lot also. And I think until I did this, I I really I don't know how to put this into words, but it's something you you guys talk about on this podcast, so I'm really grateful for. Um, because I have three kids and because they're so close in age and so close to each other, and so close as a result of everything they've been through with him. He's in the middle. The two things that really that really hit me hard doing this, and it was it was cathartic. And in the coach that you know you had helping us was that I got to work with was just really beautiful at this too. But uh reflecting this back for me was realizing how much pain I was holding, not just for him, but for his siblings. And you know, and how helpless you are to all that. Like, and and that's also a relief. Like, I have no power over this, so I can just be compassionate around it. But I think we subconsciously stress thinking we should have some power to mitigate that in some way. It's a subconscious, like maternal instinct, and it's like I can't protect any of us from any of this. All it can do is is be very loving and very gentle and make sure that they know that anything they're feeling about any of this is okay. Um, so reliving it, um, some of it was it was incredibly emotional. And then the other thing was um my mom was in town and she was reading drafts and she really it really hit her hard in a way that was like, God, I really had, I really haven't been there for you in those ways. I I just I don't think I've and I said, well, you know, the fact that you're reading it and feeling it that way now really is is absolutely beautiful. And you've always been generous, and you've always like she's she's always been just so emotional in her response about especially the injuries that happen, that you know, I think she read it feeling like she wasn't as aware of the big picture. And so having like reliving it all and realizing not only, you know, did I manage it better than I thought I did at the time, but that like everyone's emotions were were such a big part of it, and we were all kind of going through it alone in certain ways. And some of it you really don't know the benefit of until you look back, right? You know, like I was very present to my kids, I thought, but it wasn't until my son was much older, my oldest that was like telling me some stuff he went through in high school that he didn't want me to know about because he he felt like we were so, you know, we were needing to be so focused on figuring out what was going on with Griffin and like, oh, that that just you feel so bad when you hear stuff like that. You know, um things like that. So yeah, that those things were beautiful and hard, and like ultimately just the you know, that the strength and the relief you get from sitting with it and letting it just wash all over you and hit you hard. It's it's just such a um cathartic thing. I wish everyone would allow themselves to experience. Not pretty, but it is beautiful. And it's so healing, right?

SPEAKER_02 21:10

Just get out of our bodies and down on paper, whether it's shared with anybody or not. So if you're out there listening, I hope this inspires you to grab a notebook and just start writing stream of consciousness, your thoughts, your feelings, you know. You can go back to the beginning or where you're at and you know what you're in the thick of right now, but just write, get it out, and and don't be afraid to feel because it is part of the healing process. And Dr. Zoe, you can speak to that better than than I or even Carrie, you know, about how healing it is to really write and express.

SPEAKER_01 21:46

Yeah, it's really the act of not holding it in because it's the holding in that causes so much, you know, more stress, more anxiety, more isolation. But when you can Purge and some people purge very well on the paper, other people purge by moving their body, other people purge by speaking, by moaning, by just you know everybody needs to kind of find their thing. I definitely always encourage people to start with writing because it's kind of an easy modality to really understand what you're thinking. And if you allow yourself to put pen to paper without conscious thought, you can sometimes find out what's really happening with you. Yeah. A friend of mine said to me when she read some of my writing, and she had kind of that similar experience that your mother did carry, like, where was I when all this was happening? I, you know, she felt bad, like I wasn't there for you. And I remember telling her, but you were her just showing up for me every day and having a normal conversation was life-giving because in those moments, um, I didn't have to be, you know, the caretaker. I didn't have to focus on those things. And so we need both. We need people who can really be there and talk to us about all the things that we're struggling with. And then we need people that can treat us like like regular women and have a regular conversation that has nothing to do with disability and caregiving. True.

SPEAKER_00 23:17

No, they absolutely we need all of it.

SPEAKER_01 23:20

We do. Yeah.

SPEAKER_02 23:22

We need so much. And that's okay. We do. We do, we do.

SPEAKER_00 23:30

Um you didn't ask me to do this, but that is such a great reminder and plug for the circles that you have us do that like this isn't necessarily unless it's what you want to talk about. This isn't necessarily we come together and talk diagnoses. And in fact, if not it, like this is really for you. So this is your time with other moms. And um, and I think that that's like such a gift. And I and I always try to keep that in mind and like frame conversations around, you know, like what's lighting you up or what's what's hold you know, weighing you down. Yeah.

SPEAKER_02 24:05

Yeah. I like that, Carrie. So Carrie is our connection circle leader for Portland, Oregon. And what she's just referring to is our support groups across the United States, which we call connection circles. And it's a kind a time to come together and share, but we don't always have to talk about disability and caregiving. We can just, like you said, what lights you up? You know, what is, you know, one glimmer you experienced this week? You know, were you beauty hunting? Um, what do you want to vent about? What's a junky show you're watching? You know, like it's just it's the coming together with people in similar circumstances that is comforting. Whether or not we share our love and war stories or not, just the coming together. There's a common bond that we all share, and we know that walking into the circle, and that's beautiful. So, Carrie, you said in your piece, in your letter, um, well, when no one is ever prepared, which, amen. No one is ever prepared for this at all. And yet you quickly, or not so quickly, adjust and figure it out. And you read and you learn and you study and you talk to others and you talk to experts and search online and join Facebook groups and all of that. Um, I love how you said you adjust, you reshape, you reimagine, and you reframe. Is there anything on that that you would want to comment on?

SPEAKER_00 25:35

Yeah, I thank you for that question because I I can imagine even you both and every anyone, no matter what the medical or you know, um uh intellectual diagnosis, like whatever it is for anyone, you you take in so much information and over time you realize like these are also humans in front of you, and sometimes they're Googling.

unknown 26:00

Yeah.

SPEAKER_00 26:01

And um, so like everybody is doing their best to like figure out the angle and the information and like put together a puzzle, especially in our case when it's not like so cut and dry. But even then, I mean, what I've learned so much is even in even in a specific diagnosis, there's so many different ways it can look. And um, and so you like take it in, and then like when I say reshape and reframe, that literally came in time, and I say it in the chapter, like from like taking my gaze and all my attention and all my emotion away from the information coming at me that I can't totally like digest all at once. Sometimes it's a fire hose, and I look at him, and he is such a better beacon of what's going on, what's what's true in this moment, and even where we're going, you know. So it's like I I can I can take all that in, but not take it as gospel or like in ink, and you know, it's like set in stone, and just say, okay, these are really good guide things to look for and be aware of. But there is still growth and there is still um joy and desire and planning and you know, things happening right here. And that's what I like constantly have to like reshape around is let let him be the guide. And that is like probably my greatest reminder on this whole journey is is there's things that really do break my heart. And and I do, I have learned that it's really important that I let myself feel heartbroken sometimes, and I and I get really sad and I grieve, but I don't live there because that doesn't really help him. And and there's almost in our in this family at this time, there's no point being sadder than him. And he is like a pretty joyful person, and so I would miss out so much if I was constantly in a state of despair.

SPEAKER_02 28:02

What would you say to somebody who's feeling the despair at the beginning of their journey? Either one of you.

SPEAKER_00 28:10

I mean, I would say it's super normal and okay, and don't like no need to clock that. And also, you know, um, are you getting support? Are you are you having the time and the space to really just hold yours? Because I d whether or not I had a kid who had any diagnosis, I think I was just raised and programmed to like identify mine, but very quickly go to other people's emotions to take care of theirs. And um, that happened in this case. And it took a till like, I don't know, 10 minutes, you know, not that long ago, where I was like, oh wait, I really gotta sit with my own for a bit before I can be there for anyone else. And um, so if I could, if I could say that to someone now, it's like identifying that and being there for that and getting support around that is really ultimately gonna help the whole journey.

SPEAKER_01 29:12

You know, we use that word journey, and it's a good word. It it it's kind of what's happening, but sometimes with that word, we have this idea that there's an end goal, like we're we're getting somewhere, and we should have a certain pace, right? And maybe we want to try to get there a little faster just than someone else. And so I would encourage someone to reframe that and not think of it as a journey. There's lots of seasons in this thing, but really what you're doing is you're learning a new language, and this is a language you're gonna speak and live in for the rest of your life, and that's okay. But when you learn a new language, you bumble, right? And you don't fully understand and you can feel frustrated and you can feel misunderstood. And that's what you're doing right now, is you're learning a new language, and that's okay. But eventually you're gonna become fluent and things will get a little easier, and then they'll change again, and that's okay too. And so if you start to not think of it as a journey where you've got to get someplace or you have to get there on a certain time, it can help you stay really present for where you are right now.

SPEAKER_00 30:26

I I really appreciate that that so much because I am, you know, on this parenting, you know, ride. Lack of a better word. It's an okay word with with a lot of other people, with other kids, and there's there's this sense that you launched them, and then that's the end of the journey. And that's just so not true because we see it with our own parents. Like they don't ever graduate us, you know, they're still worried about us and they still love us, they're still invested. And I have a 24-year-old who's, you know, like just left, but he'll be back. And like the thing that we we definitely um, I think you you did us such a service with that to stop seeing it as a journey and just as a like a chapter and a never-ending story, you know, like these are chapters, and um this chapter is is got its real gifts because they're all becoming adults and yet like there's no there's no end in sight. So I appreciate that a lot.

SPEAKER_02 31:27

Yeah, any reminder to stay present is welcome, is needed. I remember um Lisa, who was my first mentor, she said, like this week, this month is enough when you're thinking about your child and the diagnosis. Just stay here. Not to mention, obviously, the day, but like it's so easy to future trip at the beginning of your journey in the first 10 years of your journey as a parent to future trip when you have a diagnosis, when there's a struggle, when there's you know, whatever it is that's going on that's extra. It's so hard not to just go forward and wonder like, how is this gonna play out? Okay, I have this diagnosis, but how is this all gonna play out? Where is Ryan gonna land on the spectrum of Prader Willy syndrome and you know autism? Um, and we we just we have to remind ourselves to stay in the day. It's really, really hard. Like write a post-it note and put it on your mirror in your bathroom so you see it every time you go in. Focus on today. Zoe, I want to highlight a couple things from your story. And I know we did touch on this, but how you said, like, uh I'm the wrong mother for this. And I I just you know want us all to validate. We've all felt that way. Yeah. We all still sometimes feel that way. Like, I can't do this.

SPEAKER_01 33:01

I I'm not meant to do this. Yes, I remember the platitudes that my you know blessed friends uh trying to make me feel better would say to me, you know, that God doesn't give you more than he can handle. And oh, so glad it, you know, it was it was this diagnosis and not this, and you are so strong, you're the person to deal with this. And I just remember, you know, I would smile and deep inside I was just like, I'm not, I can't handle this. He did give me more than I can handle, and this isn't fair. And I felt that my daughter was being punished and I was being punished, and our whole family was being punished, all of those things. And also I felt way too much shame to be able to voice any of those things. I just held them, right? And I I don't want any other mamas to hold that, whatever you're feeling and thinking, say it, speak it, write it because it matters and it's real. And all those people who are saying those wonderful things to you, if this had happened to them, they'd be feeling the exact same way.

SPEAKER_02 34:08

You you also talk about mom guilt and caregiver guilt and shame and the phantom critic. Is there anything you would want to expound on?

SPEAKER_01 34:18

Yeah, you know, this goes for all moms. Really understanding. I mean, mom guilt is just such a ridiculous thing that we get given as soon as our children are born. Well, actually, before we we we get it the second we get pregnant. It just comes, you know, it just comes. It's all those warnings on the things that people buy you. Oh my god.

unknown 34:38

Yeah.

SPEAKER_01 34:38

And it's even worse now because there's all the stuff that you can Google and look at, all the things you're doing wrong in your pregnancy. Understand that guilt, what real guilt, healthy guilt is, is when you've done something to break your moral code. And there's so many moms feeling guilty about something that they haven't broken their moral code, right? That's invalid guilt. That's fake, it's shame-based, and that you need to stop. So when you start to feel yourself feeling guilty because you forgot to do something because you ate that shrimp or fish or whatever you did when you were pregnant, or because you know, you don't have enough money to get the best treatment for your child. Whatever it is you start to feel guilty about, ask yourself have I done something to break my moral code? Did I just make a mistake? Was I stretched to capacity? And if you have done nothing to break your moral code, then your work is to get rid of that guilt in whatever way, shape, or form that you can, get rid of it. So, yes, I talk about shame, I talk about guilt. Shame is, you know, that other feeling that I am wrong. But I know, especially in early diagnosis, there's so much guilt and there's so much questioning. Why? What did I do? Could I have done something different? And that's about grief, right? When we go and we really try to fix the past, as if if I can figure out what I did wrong, that somehow it's going to change today and it won't. And so the other invitation that um I give you is to give up all hope of a better past. Whatever you feel might have happened that it that's caused this, that's done. And acceptance and health moving forward is being able to give up all hope that the past could have been different. And let's stay right here, not in the future, like you said, Jessica, but right here in this moment.

SPEAKER_02 36:28

So good. I love that definition. I heard you say that when you spoke at the retreat, and oh it really still gives me chills every time you say it, Zoe. It's very freeing. It's very freeing. I also love that you said in your letter, you are not broken and your child is not broken. And you're gonna feel broken and you're gonna feel like my family's now broken and my child's broken because of this diagnosis. How did you shift from feeling broken or feeling like your child was broken? And what would you say to our listeners?

SPEAKER_01 37:05

It took a lot of it took a lot of shame work um for me to shift from that. And the problem is that from the very beginning, they're trying to figure out what's wrong with your kid, right? You're in the NICU, and we're all trying to figure out what's wrong. And so it starts with that, and we have this idea of this kid is wrong. Let's find out how they're wrong, and now let's figure out what we can do to fix it. Instead of realizing this is our child, and this child is not the diagnosis, right? This child is exactly who they are, and they're here for a reason, and no, we'll never understand it. And maybe we should stop trying to figure out the you know, the meaning behind that. There's a song called, I don't remember the name of the song. It's something about like, you're not broken, just bent. And my sister actually sent that song to me. And I love the idea of thinking of, okay, you know, we're just a little different. We're we're a little bent, we're weird, you're we're unique, we're not broken. And when I can look at Sully, that's my daughter, as not broken, but she's a little bent, and we gotta see, find ways that she can kind of fit in in this straight, you know, society. Um, for me, it was helpful. For me, it was helpful. Um, because there's nothing beneficial in seeing yourself or your child or your family as broken. You're just different, and this is a different life. And it can be a good life, and it can be a really sucky life sometimes. And we have to be able to just admit and honor all of that, but it doesn't mean that you're broken.

SPEAKER_02 38:39

I I appreciate you bringing this up. And for anyone who's listening, I know that we can get stuck in the early years with trying to fix, trying to heal, trying to normalize. You know, we're expecting that a magical IEP and IEP team or medical team is somehow going to make our child different, easier. The therapies, and I'm not saying we don't do all the interventions and we don't see the doctors and we don't, you know what have you. But when we're in a mindset of we have to fix and heal and normalize our child, we're doing ourselves such a huge disservice. And I think we're also not appreciating the beauty in our kids and how much they teach us more than we ever teach them.

SPEAKER_01 39:26

Yeah, that's so good. And I would just invite every mom to sit because it's hard because you have so much on you, and I just want to honor all of the responsibility and the burden that you have on you to do all of those things you just mentioned, Jessica. But in doing that, sometimes we forget to just look at our kid and go, Oh, this is just you. Like try sometimes to look at your child without the cloak of their diagnosis. Because we do that with our neuro, you know, our typical children often. Um, but sometimes our kid, we kind of look at them as, what do I need to fix this moment? What do I need to fix tomorrow? instead of just like, let's be present with you, who you are. Yeah.

SPEAKER_00 40:06

I can't tell you how many times I had that moment where I was like, Oh, is this something I should oh nope, this is adolescent boy stuff. This is you know, like, oh this is this is hard, but not that that not because of a diagnosis.

SPEAKER_02 40:23

Yep, yep. Yeah, true. Yeah, I know. Or when you see like siblings bugging each other and it's like, oh, is it because of this? And oh, it's so hard. It's like, well, no, actually, siblings annoy each other. They bug each other, they get on each other's nerves, they pick on each other, they tease each other. Yeah, they it's just all normal and it's all part of it.

SPEAKER_00 40:46

Yeah, it's it I was thinking about this earlier when you were talking, because I, you know, I'm I'm trying not to mitigate these adult relationships because you know, they're 20, 23, and 24 now, and they love each other a lot. And every once in a while, you know, the older or the younger, like, it'd be nice if you said thanks for me driving you to this concert. You know, like it would be nice if you had asked me about this. Do you want to ask me, you know, and and he is working on that stuff with a therapist, and and we had a conversation where I was like, I am not defending how that felt for you, right? Like, I or not defending him and because that didn't feel good for you, but really ask yourself if you're gonna constantly be disappointed if you are filtering him through a neurotypical lens, yeah, you know, and really like think about like what he writes to you in those cards and in those texts and like the fact that he wanted to do this with you. And if you're always gonna be looking for that, you are gonna be disappointed and you might miss, you might miss like what what he is trying to convey. And and also just guide him gently. Like it's really okay to tell him, hey, this would be a great time to thank me for driving you, you know, and spending the evening with you. And I really enjoyed it, you know, model it instead of look for it and be disappointed. And and I do that so delicately because I don't want them to feel bad about that either, you know.

SPEAKER_02 42:09

What is one thing that you wish somebody would have told you at the beginning of your journey? If somebody could have just looked at you in the eyes and said something to you that would have been comforting, that would have brought you peace or hope.

SPEAKER_01 42:29

You know, it's funny because you say peace and hope, but I I think I would have loved for someone to look at me and say, it's okay to feel devastated right now. It's okay to feel that for a time. No one gave me permission. Everybody wanted to fix it for me. You know, everyone wanted to make it okay and make it better instead of just saying, it's okay. It's okay to feel that way right now.

SPEAKER_00 42:55

I have a hard time answering this only because there's, you know, there's these two different things. There's an intellectual disability and then there's seizures. And I really think it would have been helpful early on. And I think I got there much earlier with the intellectual disability to be like, you know, this is just learning a language to use your term. Like this is this is a beautiful aspect of your family that's gonna make you all really present and laugh a lot and enjoy music in a different way, and all that. That would have been so great for someone to just, you know, like that. That's not what we're fixing here, which I I've really come to. It's just I'm always trying to solve the seizures, and that feels like an um endless, pointless battle sometimes. And you know, we have people in our life like, what are the doctors saying? And I'm like, There's one. And you know, it's always like meds, like try some meds. And um so I think I think that it might have been helpful for someone to say, like, you may never solve that piece. And like don't feel like you're failing a test if you can't. Like that that might just be part of it. And I think I was always thinking, like, if we if we could fix that. And then I I find myself wanting to say, you know, I'm not rejecting who he is by trying to solve the seizures. You know, that's that's not it. It's just so hard to like watch him make progress towards something and then have a cluster come and just take him back like two months, you know, and um, so or or further, like, you know, and then all of a sudden his speech is slow again for months and months. And so things like that. It it is a hard thing. And so I I think that constantly I wonder if we're gonna find something that what if we could have found that sooner? What if he could have enjoyed high school? So if someone could have said to me, Don't do that, because there is no clear path here, that would have been helpful.

SPEAKER_02 44:55

Well, thank you both so much for diving into your stories, diving into the book, having such a rich conversation and reflecting and sharing insight and your heart and just all of it. I uh greatly appreciate it. And if you're listening, please get our book. Suddenly Brave Together. Uh we'll link it in our show notes. You can also go to our website, we are brave together.org, and go to the book page and you'll find both of our books. Get both of them, get it for yourself, get it for your friends, get it for your family, get it for anybody in your life, teachers, doctors, pediatricians, therapists, um, they would all benefit from reading this book. Thank you for being with us today. Thanks so much for listening today. Do us a favor and leave us a review and a rating so that this podcast can get into the ears and the hearts of more and more moms. Did you know that Brave Together Podcast is an extension of our nonprofit organization, We Are Brave Together? We Are Brave Together serves an international community of caregiving moms, offering support groups that are virtual and in-person, educational resources, and low-cost weekend retreats. To join us today, go to WeAreBravetogether.org. Our support and sisterhood awaits you. Brave Together Podcast is for entertainment and education purposes only. It's not a substitute for professional care and should not be relied on for medical or mental health advice. The use of any content on our podcasts, links, show notes, or on our website is to be done at your own personal risk. Please seek out a professional to assess your own medical or mental health concerns because we are all beautifully complex, and the content of this podcast is for a broad audience.