The Next Right Thing: How to Move Forward When You Feel Stuck with Misty Coy Snyder

Misty Coy Snyder shares how “the next right thing” helped her move forward after her son received a Down syndrome diagnosis. This episode is for the mom who feels stuck and needs one simple step forward.

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Transcript

1:31

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. Ah, we're still in the freshness and the wonkiness of January. I'm still trying to, get my bearings as I recover and reenter from, non-routine life. But we're close. We're close. It's a Friday, that I'm recording this and I found myself this morning a little grumpy. Usually grumpiness for me is a sign that there's something more going on. And when I did a little bit of a check-in with myself, what I learned is I'm tired and not kind of tired, like I wasn't wanting to go back to bed. But it was, that I've been caring for my son. While I've been home, kind of working, kind of caring for him for the last week, and the level of vigilance that it requires to do that is a lot, and it was wearing on me, so I'm thankful it's Friday. And that I will get a break tomorrow, meaning my husband will be home and I can kind of not be the one running the show for a little while. All right. But that's actually not what this episode's about. I am so excited to introduce you to our guest today. Her name is Misty Coy Snyder. And she grew up, not too far from where I live in Southern California and studied musical theater and classical acting through high school, and ended up in a reputable acting program in college. She moved to New York City in 2008 where she pursued her performing aspirations for eight years before becoming a mother. In 2020, our beloved 2020, she entered the disability community by way of her son Jedediah, who they call Jed, and he has Down syndrome now. She uses her voice to spread awareness, encourage the newly diagnosed Connect with the Down Syndrome community at large. She's spoken to the United Nations in March of 2025, hosts her own podcast called Bold Voices Soft Hearts, and her first book will be released in August, 2026. And we talked just a little bit about that in the episode, so you'll get to hear about that. And yeah, actually there's a fun backstory to how she ended up on the podcast. And we talk about it in the episode, but, I, met her, you know, met her on social media and we were chatting and my gut just said, Hey, she'd be a great fit for the podcast. Let's invite her on, and she graciously accepted, and then several days after, that conversation, I was looking at the, the landing page for an event that I was also asked to speak at. And she was there as the keynote speaker. And I was like, oh my gosh, same, same. That is really fun. And so then I learned I'd be able to meet her in person. So how fun is that? And the conversation we had was one that left both of us. I think. Feeling connected, feeling, I don't know, this might sound funny, but feeling right, feeling like we are in the right spot, we're the right people for the job, and this is a hard job. And, kind of the complexity. And we talk about this in the episode, the complexity of all the grief, and all the goodness and that all coexist together. So let's welcome Misty to the show. Enjoy.

Kara: 6:04

Misty, welcome to the Special Needs Mom podcast.

Misty: 6:08

Thank you so much. It's so good to be here. Kara.

Kara: 6:11

Yeah. I was looking back at our, Instagram conversation. I was like, what prompted me to be like, come on the podcast and actually it was your generosity in reposting something that, we had shared over on our channel feed. I don't know what we call it, what do we call it on Instagram? And so we started a conversation. I was like, Hey, I like this lady. Let's do it.

Misty: 6:29

Yeah.

Kara: 6:29

So welcome, glad you're here.

Misty: 6:31

Thank you. I'm so excited to be here and you're consistent and wonderful Content continues to come through my feed and I just had to encourage you and I'm so honored to be here.

Kara: 6:42

Yeah. So let's give our listeners. A little, snapshot to kind of be like, where do you live in the world? Yeah. How many kids do you have? A little bit of like, who you are today and then we are gonna spend some time, going back down memory lane and looking at kind of your story. But let's start with today. Where do you find yourself?

Misty: 7:02

I'm in Madison, New Jersey, which is about an hour outside of New York City, and I'm originally from Southern California, so, west Coast, east Coast gal. And, I live here. It's a really sweet town. If you've seen the movie field.

Kara: 7:16

I've been seeing pictures and I'm like, I'm like, that's like really cute.

Misty: 7:20

It's, it is a. Dory Book Town. It's like, the movie Family Stone, it, a lot of the locations were filmed here. And it's just, it's a small town close to the biggest city, big town. And so it's kind of like the best of both worlds. I adore it, I adore it. and I live here with my husband and my two sons, clay, who is. Seven, he'll be eight next month. And Jedediah Jed, who is five and he has Down Syndrome and we are here in our little, in our Little Nest.

Kara: 7:54

Awesome. And your like professional background is in the entertainment space. Will you tell us a little bit about that and kind of Yeah, just. That aspect of your life?

Misty: 8:05

Yeah. So both my mom and dad are singers. That's how they met. and my dad plays instruments and they played together, in the seventies into the eighties, and. Boom, here I am. And, my grandmother was a concert pianist and my grandpa was an opera singer and all my cousins.

Kara: 8:22

Wow. It's like in your blood

Misty: 8:24

there is literally,

Kara: 8:24

did you feel pressure to be really good?

Misty: 8:27

Yes, but more so like if you can't sing, like you're out. Everybody, everybody sings. And it was great. Like growing up it was great. I'm an only child and so I would get with my cousins and we would do harmonies and like big old things. And it wasn't until I was about 10 when my mom quite literally made me audition for a. Musical. And I went kicking and screaming, and then I sat in the back of the room and was like, oh, this is what I wanna do for the rest of my life. Like literally it was like a pink. And so I auditioned, I got Dorothy in the Wizard of Oz, and the rest is history. Oh,

Kara: 9:02

wow.

Misty: 9:03

So I, I was 10 and then I went to performing Arts high school for musical theater. I went to college for acting, classical acting Shakespeare. And Ibsen and Es Sternberg and all the really, the classics. And then moved to New York to pursue that. So that's how I ended up to the East Coast and, have literally done every job under the sun, because that's what actors do. We're chameleons. Mm-hmm. Mm-hmm. And we do what we need to do to survive. I was a nanny for, mm-hmm. Many, many years in the city, and I like contracted out people to work for me when I had an audition. So I was a wheeler and a dealer.

Kara: 9:38

Oh, I love it. I need a feeling. I need a per diem nanny. Hey, I'm gonna

Misty: 9:43

call my five backups. Okay, I'm good. I'm going to this audition. So that was my life in my twenties. Yeah.

Kara: 9:49

Wow. Okay, so, do you still, exercise that talent and skill and gifting now?

Misty: 9:54

I sing on the worship team at church and when when people hear that, they're like, oh, that's so sweet. But this worship team is like, it's like Broadway people because of the proximity, uhhuh and professional musicians, and it's just really fulfilling to. Perform. Like we do a big Christmas concert and people from all around come. And so that's kind of my, like once a year like performance. And then I sing on watch team once a month-ish. I sing to my kids. but Jed and I will do like some brand deals. Sometimes I use some voiceover work Oh, nice. And that kind of stuff. Mm-hmm. But otherwise I'm kind of like in the advocacy space. So,

Kara: 10:34

yeah, definitely.

Misty: 10:35

Yeah.

Kara: 10:36

Leave. You'd be proud. Levi And I got a, commercial gig amazing. For a toothbrush, and it's actually really cool toothbrush. It's made by, oh gosh, cure Pro. It's a French word that I always mess up, you know, CUR. P-R-A-U-X or something like that.

10:53

Oh,

Kara: 10:53

it's like a, a known brand. okay. In like Europe, anyhow, they have an accessible, toothbrush that, like you stick it in your mouth and it does all the work for you. So we got asked to be in a commercial, for that and. Honestly, I would be like, he would love it. So I'm like, I would have done it for free. But we got paid

Misty: 11:12

amazing.

Kara: 11:12

I was like, it was so much fun. Amazing. They were gonna fly us to, they called us, they're like, Hey, can you fly to Florida like tomorrow? And we live in San Diego. Right. And I did think about it for a second'cause I thought it was kind of cool, but I'm. No. Like you do realize we have multiple disabilities and we can't just pick up our bodies and like go anywhere. And they were very accommodating. They ended up renting a house near us to do the filming in, but Oh, cool. It was pretty funny. Yeah. That is

Misty: 11:40

so neat.

Kara: 11:40

Yeah. I love it. Yeah, so I, it's been a couple years now, but I would get people like from high school be like, is this you the commercial? I'm like, that is, that's me and my baby. And I realized from that, and you might appreciate this, I was like, I need to smile more.'cause in my. I'm happy and smiling, but on the outsides I look very serious. So I'm practicing. See, now

Misty: 12:01

I'm

Kara: 12:01

doing

Misty: 12:01

it. I never have that problem. In fact, during my concert, someone, someone came up and said, do you smile that much in real life? And I said, yes. Yes I do. I am very expressive. See,

Kara: 12:13

my face needs to get on board with my, like inside and my whole being, but we'll work on it. I was like, that's fine. Okay. It's fine. Okay. Do you miss SoCal?

Misty: 12:22

I do, you know, I was born in San Diego and I miss, you know, what I miss about it is, the weather. Obviously like not, I love the seasons, don't get me wrong. Like, fall is my happy time. Times a million. Like if you follow my stories, I go, I take a, I walk three miles a day and you see like, oh, it's fall, it's snow, it's summer, it's spring, and you see it. And I love that. I think there's something to those rhythms. But as a mom, and you know this like getting your kids. Well, you don't know this'cause you're in San Diego, but like the idea of like I

Kara: 12:55

do'cause I just went to Idaho

Misty: 12:56

getting all, all Yeah, exactly. But getting them all bundled up every single day if it's freezing out is so annoying and like still foreign to me. Even though I've lived here like over 15 years doing it for kids. I'm like, This is impossible. So I miss that sort of ease of life of California. I don't miss the traffic. I do miss the beach, but we are about an hour from the beach, so it's not terrible.

Kara: 13:23

Yeah, well I just, as I mentioned, I just went to Idaho. We went to go visit Alex, our family friend, our past nanny, and also, shout out the editor of this podcast. And so we went to Idaho. There wasn't snow this year, but it was still like chilly and we did drive to some snow and, well actually fun fact, I did grow up in the snow. I grew up in Alaska until I was six, so I personally lived in that environment. But when you are six, you're living your best life and you're not too worried about. Whatever is happening, it's your parents that are dealing with it. And so I would say my kids loved it and it was wonderful to be in the environment like, you know, for a week. and I will say I didn't hate coming back to where it was just so easy to walk outside. My little toes were not so cold. Yes. But I can, it's like, it has a whole different level of fun having the weather. But from an accessibility standpoint, I would say for Levi, it was really challenging I I discovered this new store. It's not new, it's been around for a long time, but it's called DXL. And if you are not in the big and tall category, it probably doesn't apply to you. But if you are in the big and tall category, It's in a wonderful store because it has all the clothes that actually fit your body. So it's incredible.'cause he is in the big and tall category. so like we were shopping at Costco and like for, you know, so many years.'cause Costco has great clothes as we all know. and it was like not working anymore. We're like, this isn't working. I want my baby to be comfortable. So clothes wise was great, but shoe wise we, my husband actually took the lead on this, like trying to find. Boots like shoes other than tennis shoes that fit his feet, proved, unsuccessful.'cause we even, we found some that were like technically the right size. We had them shipped to Idaho because we couldn't get'em in time here in California. and even though they technically should have fit, like they didn't fit on his feet, like his feet, the way that they are designed, didn't work. So I'm like, for that reason, I'm like, glad that we don't have to, add one more thing to our accessibility challenges. So

Misty: 15:22

Yeah. Yeah, for sure.

Kara: 15:24

Yeah. Okay. And if anyone listening has, a human that they love with a size 16 wide feet, you lemme know, will you, lemme know your success stories because we are still, figuring that out.

Misty: 15:35

The boots are a real challenge, especially with SMOs., It's, you have to like, take them off and just be like, go have fun in the, in the snow and come back. The boots are brutal. When you have it

Kara: 15:47

mm-hmm.

Misty: 15:47

As someone with, you know,

Kara: 15:49

yeah. Right. Like our solution with our now a FO, upgrade from the SMO, is Crocs and which is great in California, but that would not work, in weather, only

Misty: 15:58

in the summer. But he loves his crocs. He'll, it'll be snowy outside and he'll go in his bin and grab his Crocs and be like outside, like, yeah, you, your little to will freeze. But that's a good try.

Kara: 16:09

Yeah, go back. Okay. Well let's talk a little bit about your becoming, I often call it on this podcast and, you have shared on your Instagram, parts of your story. But I'm excited to dig into more of it, particularly because I think it's going to be very relatable for, any mom who do not expect and anticipate to have a child who was disabled and whether that's disabled from, In, you know, in utero, or, you know, from, early delivery or anywhere in between'cause we have, acquired disabilities. Yeah. And, I'd love to hear a little bit about your motherhood journey like when you learned that your son would have Down syndrome. Yeah. What was that? Tell us about that day.

Misty: 16:53

Well, I'm glad you opened with asking about my background because I think it's important in terms of like what my state of mind was. You know, my whole life was performance based. It was performative. So you're doing well in school and you're doing well, and you're on stage and you need to look a certain way and act a certain way and all those things. And that's how I grew up. That's how I became as an adult. And so, when I received the diagnosis, I was about 14 weeks. Pregnant, I had just come off of one of those concerts I was telling you about. I found out I was pregnant. Right before I had a show, I was so excited and we always knew we wanted to have two and I'd had a miscarriage the year before. And so I thought, okay, this is it. This is happening.

Kara: 17:36

My dream's coming true.

Misty: 17:37

Exactly. And I had this picture in my head, and from the second I was pregnant, it felt different than my first son. And so I thought, this is gonna be a girl, and it's gonna be like, I had this whole story in my head and, about, so it was, March 6th. 2020 and it was before. The, mm-hmm. The world shut down. Mm-hmm. And I received a call from my OB and I had been waiting and waiting and waiting. We, we had not done any genetic testing with my older son, but we did with this one because I wanted to know if it was a girl. So we did, and I had been waiting to find out, and it was taking a really long time and I couldn't find the results online. And my OB called and, Just immediately, like something was off, like something was off in the way that she

Kara: 18:26

mm-hmm.

Misty: 18:26

Speaking to me. And so she started with this looks okay and this looks good and this looks good. But, you know, you did come back, I'm sorry to say, is, a high risk for Trisomy 21 and it was like one of those moments where. It felt fake. Like it felt like you, like I floated out of my body. Mm-hmm. You

Kara: 18:46

were

Misty: 18:46

watching it happen, looking it, yeah. Yeah. Like, this is clearly a dream. I had just laid down for a nap, you know, in the, in the early days you're so tired. Mm-hmm. So I was almost asleep when the call came and I was like, I'm dreaming. This is not real. And it felt like an out of body. It felt like I was underwater, sort of just like I couldn't hear her words. And I had to clarify because I think I'd only heard Trisomy 21, maybe like one other time in my life. So I was like, you mean like down syndrome? And she said, yes. I'm so sorry. She said, sorry, probably like three times in the same sentence.

Kara: 19:19

Mm-hmm. Mm-hmm.

Misty: 19:20

And so you already have those feelings of, you know, like I said, that performative, like everything must be a certain way for you to be okay. And then you have the person who is your healthcare provider, basically giving you a diagnosis that sounds like you have six months to live. Like that's how interpret. Yeah.

Kara: 19:40

You

Misty: 19:40

know, and, uh, her

Kara: 19:41

way of being was saying, this is bad.

Misty: 19:43

Yes. Yeah. She, she prompted it by saying, I'm sorry. And I, and I do wanna say, because I, I've told this story many times and, and I feel like it can be easy to sort of villainize the doctor. I don't wanna do that in the sense that I don't think there's enough education. There's not enough moms, like you and me, talking about our experience for a doctor to even know what to say. Totally. But it was. Really rough. It was really rough. And I was, I was devastated in that moment. I was truly,

Kara: 20:13

yeah. And so, you know, you're digesting this information, and I'm sure there's many, many different, aspects to it. But if you go back to, what this news kind of opened up for you in terms of what, like what did you feel, but what were the fears that you had now with this new information?

Misty: 20:34

I immediately was thinking, what does this mean for it? Honestly, it was a lot about me. It was a lot about this is not what I planned. What does this mean for my career? I'm not one of those moms. Like I had pictures in my head growing up and seeing moms with their kids who had disabilities, and I'm like, I am not her. Like I know myself well and that is not me. I can't do this. It was this narrative. You, you can't, you're the wrong one. Your whole life will change. You will have to be like a sacrificial lamb. And it was like this martyrdom. Complex, and I thought about my, my son, my older son, clay, like what will this mean for him? He is gonna be made fun of, and we'll never have any friends and everybody will run around and I'm, I'm saying this crazy fast because this is what my head would like. Mm-hmm. It was a hamster wheel of trauma othering. Devastation and I was stuck in that place., I had gone downstairs and my, my husband just happened to be home that day and I literally collapsed at the bottom of the stairs and I couldn't even get out the news. I was just saying, I can't, I can't, I can't. I can't, I can't. And, and he was like, what? And I told him, and in an instant, he said. We can, this is our baby. And just hearing we can, something switched in my brain, like I think a lot of it was some shame, some shame cycling of you are not equipped to do this, you're the wrong choice. Mm-hmm.

Kara: 22:14

Like

Misty: 22:14

what is God thinking here? This is ridiculous. You know? And some of it was, I had to face some really dark parts of my own heart in that moment. You know, just, a lot of what I perceived as selfishness. But now looking back five plus years later, I was just scared. I was scared of what I didn't know, and I was mm-hmm. And I, there was just so much fear and just, I, I have so much compassion for that version of myself and I have compassion for the mom or dad who may be listening who feels the same way that I just described. Right.

Kara: 22:51

I think that, yeah. I really appreciate you, bringing that compassion to the conversation because this is why I wanna talk about this topic is because I think that. Most of us, this is a generalization, but most moms I talk to particularly'cause moms, when they're coming to talk to me, they're not filtering in the way that they do maybe everywhere else in their life. So they're actually giving themselves the opportunity to acknowledge the actual thoughts and the actual feelings they have. And the moms who love their children. Also have these dark spots in their hearts.

Misty: 23:34

Mm-hmm.

Kara: 23:34

That I like the way that you described that, or even just these thoughts and feelings that they don't know what to do with

Misty: 23:39

Yes.

Kara: 23:40

Because they're incompatible with how much they love their child, but they also are true and valid, as in they're having the thoughts and the feelings.

Misty: 23:50

Yes. Yeah.

Kara: 23:51

And so validating those and not kind of, Adding to the shame of how dare you think this, who thinks it's about their child, I think is so important. And it sounds like maybe similarly. I think my relationship to the disability community prior to having a disabled child was nonexistent. Like I had volunteered as like a fifth grader in what, what was called Theon Center, which I, I had no idea at the time what it was. But it was a heated pool. Heated indoor pool where people who had, I think mostly the diagnosis would've been, cerebral palsy, but people who had spasticity, which I did not know that word at the time, were, Supported to go and to swim because it was very comforting to, you know, with the muscle spasticity that they had. And so that was my only, only like thinking of, oh, this is a disabled person. And they were so othered, like they were in a whole nother campus. Mm-hmm. These people existed outside of my realm of what life was. Hmm. And, and that was very common for that day, you know, that's how we did it. And when I, I was born in 80, so like, that's just how it was. And yay, it's changing. And like, I think you and I would both know, like there's still a lot of opportunity for change. but I think it starts with having places to have open anonymous conversations where we're not gonna be canceled. Yeah. For not, being 100% all good all the time in terms of, as it relates to our relationship with disability.'cause I think what I will say from our perspective is, it sucks. I'm not gonna lie, like being disabled is really hard and for my son, I would not choose it. Mm-hmm. And if somebody else has a different relationship and they say, I would choose this because my son now is perfect how they are wonderful, but we don't all have to land in the same spot. Mm-hmm. And that's okay. So anyhow, I'm like, now I'm preaching.

Misty: 25:47

No. Yeah, I, I hear that. Well, and I think you bring up a, a good point because we all have different experiences, even in a similar space. Yes. And to give ourselves freedom to feel the way that we feel and allow that person over there to feel the way they feel. I think that's a great point.

Kara: 26:02

Well, yeah. And then you, well you briefly said before we got, to recording. You brought up the topic of the, the both and of grief mm-hmm. Of like, and so if you can remember kind of where you're going with that, I'd love for you to pick up where you left off. Because I think that this, grief is so much more complex than most of us have been taught, or rather not been taught, because we don't talk about grief as a society. Yeah. and I think that. Inside of grief is loss.

Misty: 26:31

Mm-hmm.

Kara: 26:32

But it's also, An opening mm-hmm. An opening for something new. Mm-hmm. And, it's not a cute, neat, like line in terms of how we experience grief. It's more like a, a knotted up ball of yarn. but I think that inside of this grief, so even though I'm in a space where I'm like, I would never choose this for my son. If I had a choice, I would free him of every disability that he had. and yet. Also, there's so much good in his life, and I can acknowledge all that. And I think, I mean, I am who I am now because of him, and I wouldn't wanna lose that. but just to be abundantly clear, I would give myself another chance to figure out who I was gonna be, if I could free him of his pain and of his disabilities. Mm-hmm. Okay. But back to the G thing. What, what do you remember saying when, when we were talking earlier?

Misty: 27:20

Oh gosh. Well, I just. I just remember, okay. So that weekend after the, the bottom of the stairs moment, which was like the turning point, I had a weekend where I did not get outta bed. Mm-hmm. And I wanna talk about that period of time, because for some people that's a weekend for some people that mm-hmm. A moment. For some people that's months. And for some people that's years. Yeah. We all, most of us have a moment. Even if it's just a moment, I've met people who get a down syndrome diagnosis for their child and they're like, I had a moment where I was like, Hmm. And then I was, okay. I've met those people and then I've met the other people who are like, I'm still like in that moment. So we all have a moment however long, and mine was a weekend where I didn't get outta bed. I didn't function and. The turning point for me was going to the genetic counselor and our genetic counselor was the antithesis of what my OB had been and mm-hmm. So many people, by the way, in the Down syndrome community have totally different experiences with their genetic counselor. I can imagine. I was. So blessed that she was, she knew from the moment we walked in that we were like, we're having this baby. She never uttered any other alternative. She could tell that we were like on board here, and she was giving me some cool statistics about how siblings of individuals with Down Syndrome say they're better people because of their siblings and they're, she was giving me all this stuff, this like. These glimpses of hope, mm-hmm. That I so desperately needed in that moment. And so from that moment on, I made a choice. I was still crying, I was still grieving. But in that moment I made a choice. Okay, you can stay in bed. And you can literally like, not function, not work, not, be a human or you can get outta bed and you can do the best you can. One foot at a time, one step at a time. And just around that time, frozen two came out and mm-hmm. Kac was in the cave and do the next right thing. Mm-hmm. And that became my anthem. My dad, who's an incredible musician. he wrote the sheet music out for me and he was like, go, here you go. Go sing it. Like,'cause he, when I was a working actor, he would make my sheet music for me for auditions and he'd be like, go sing it. Go sing this to yourself. Mm-hmm. And do the next right thing, one foot in front of the other, and one foot you might fall and the next foot you might. Be great and that's okay, but just do the next right thing in front of you. So I made a choice in that moment. I can still be grieving and I can still move forward. I can still take that next step. I can still be a, a proactive mom to my son who's here right now to the best of my ability. I can, that might mean crying when I'm playing with him and, and, and being like. Mommy's, mommy's just dealing with some stuff. She loves you. Let's keep playing. Right. It's like I had for so much of my life, I'd been so, and I still struggle with this. I'm a, I'm an extremist, I'm all or nothing. I am, you know, I'm, working out all the time or I'm abandoning the gym. Like that's just kind of the person that I have been. And I realized I can't be like that. I can't be like that for this. Like, I can have moments where I fall apart and then I can have moments where I'm like. Kicking this thing's rear end and doing great, right? Mm-hmm.

Kara: 30:40

Mm-hmm.

Misty: 30:41

So, kind of that coexisting of like be allowing myself to be a human, allowing myself to feel what I feel, allowing myself to grieve, but also allowing myself to laugh and connect with the Down Syndrome community. And that is the key for me. I had to, for my personality, I had to find other moms who were going through what I went through and I did. And Nothing was ever the same after that, in the best way

Kara: 31:06

possible.

Misty: 31:06

Yeah,

Kara: 31:06

I wanna, yeah, I wanna hear more about that. And I just wanna highlight, so. It's grief and is what I'm hearing. Grief and asking yourself, what's the next right step? Mm-hmm. And being clear that nobody knows the right step. Basically, it's like, what's the next step? We're just putting one foot after another. There's a saying I hear over the business world, and I'm like, that is such a good saying. We should say that more, is that you can't move a parked car, meaning that you have to be in movement, in action to. Move to change. Yeah. And so it's like, if I could reiterate that to everybody, including myself, is the value of just doing stuff, whether you think it's gonna work or not, but just actually doing stuff, trying stuff, not to fix.'cause I think I wanna highlight what you've shared is not to fix, but actually to, to be with. And that's, I think the experience of grief is, Being with all of your feelings. And so it's like you, your picture of, you know, playing with your older son on the ground with your grief, it's like being with it, making space for it all. So, okay, but now let's talk about, what you started to bring up in that is community. So again, walk us back to, you know, so you're, working in this grief process or you're in this grief process, you are kind of, I'm sure familiarizing yourself with your, the new life you're gonna have and the disabled community, where do you start to connect with community?

Misty: 32:36

You know, I. Like I said, in all or nothing, there was a piece of me that's like, you're gonna isolate. So just reminding everybody that two weeks after I got this diagnosis, the whole world shut down. Mm-hmm. I was going nowhere.

Kara: 32:49

Mm-hmm.

Misty: 32:49

I was seeing no one and it, I could have very easily spoken to no one and breathed nothing of this to anyone and kind of like mold in my own grief. It would've been very easy, probably easier than any other time in history. However, I know myself well enough, and again, everybody's different. I know myself well enough to know that if I don't meet at least one person who has experienced a sliver of something, I have, everybody's journey is different. But when you find a common connection with somebody, it makes all the difference in the world. And so my first outcry before I even saw that genetic counselor was me in the bed literally lying down like on my computer, like. I was in a mom's group, a local mom's group, and I think I wrote like a line. Is there anybody in this group? It makes me emotional. Is there anybody in this group who has a child with Down syndrome syndrome or knows somebody with Down Syndrome? Because just like you, I didn't know anybody with, you know. I didn't know disability in general. It was, I grew up in the, I, I'm in 82 and so like I, I knew there, there were othered, there were people over there in other classrooms that I did not know. And so I didn't know anybody. And when you don't know anything and know anyone, you think I'm only one. I'm literally the only one. So I think I wrote like a line. Is there anybody who even knows somebody with Down Syndrome? And this mom responded and was like, I have a son with Down syndrome. I'm DMing you my number. Call me. Mm-hmm. And, it was hard to call her'cause that makes it so real, right? Like, I don't wanna talk to this mom. I don't wanna hear about your kid.'cause my kid, I was still a slightly in denial. Like, this isn't gonna be real. Like, I was still, there were still people who were saying like, oh, it might

Kara: 34:47

not be, maybe not. Oh yeah.

Misty: 34:49

And I never got an amnio, so I didn't know for sure, but my heart knew. And so I, talking to someone felt so like, this is gonna happen. But I knew I had to call that person, so I called a perfect stranger and she was so amazing. She was just like, I get it. Like you mm-hmm. Feel all the things you're feeling. Mm-hmm. Would you like me to tell you about my son? And I said yes. And she told me about her son and her son had gotten like heart surgery was, which was actually one of my biggest fears when I found out that 50%. And she said, but you know what? He came through it. He's doing great. It's hard, but it's also great. It's great. Mm-hmm.

Kara: 35:31

You're gonna

Misty: 35:31

be good. You're gonna be good. And there's a community. And then the next day I went to my genetic counselor, she told me about the DSDN, which is the Down Syndrome Diagnosis Network. And I joined and I met other moms who were literally in the exact moment of their pregnancy that I was,

Kara: 35:46

oh wow. That's gonna be great.

Misty: 35:48

That was. Everything. That was everything. Mm-hmm. Here we were, these moms in the pandemic, like talking about what we're struggling with and it, I've never been the same. Like you cannot, when you realize, wow, there's people who literally are living me through the exact same thing in time that I am, it changes the game. And that's why I am so pro community. I'm so that that is what I will preach from a mountaintop. Like you have to find your people. They may not be your best friends. They don't have to be, but you have to have a group of people who you can turn to. You know, like even having this conversation with you, I'm filled with life.

Kara: 36:25

I know,

Misty: 36:25

right?

Kara: 36:26

I know. I, I leave these conversations feeling exactly the same way. And I've said it here on the podcast before, but I was like, I think I'm the one that benefits the most from this podcast. okay. I wanna dig into this community thing because I could not agree more. I think community is everything. every aspect that I have kind of studied and geek out in, It all points back to community grief, community, support thriving community emotional regulation. Community like this is not a solo sport. Even though, you know, our, our culture society, very much leans toward that individualism. for a lot of years and that doesn't work for special needs moms. So here's a, not meant to be a hard question, but a question that that I wanna ask because I think it's important to talk about, and I know it's where many of my listeners will get stuck. The Down Syndrome community has something that not many. Other disability, diagnosis? Have they have numbers and they have people like you shouting from the rooftops and it's great. And maybe some of us are a little bit jealous. Mm-hmm. Jealous is not the right word, but

Misty: 37:32

No, I

Kara: 37:32

hear you. We don't all share that wonderful thing. And so I think, that can be an easy stop. So I can imagine someone listening to you. Well, isn't that great? You got to meet somebody at, you know, however many weeks, pregnant and talk with them. And that's not my story. My child is one of seven in the world. Yeah. And you know, there's so many, there's so many of us out there that have such unique and rare and, individual situations.

Misty: 38:00

Yeah.

Kara: 38:00

However, I wanna be clear that there's still every bit of opportunity for community, but I do think it takes a little bit more effort and intention. So what are your thoughts on that?

Misty: 38:11

Yeah,

Kara: 38:11

do you have any thoughts on that? I don't wanna put you on

Misty: 38:12

the spot. Yeah, I do. And I do wanna acknowledge, I want to affirm what you just said, that I literally had someone come to me early on in the days of my diagnosis, say, you know, that down syndrome's like. The Cadillac of of disabilities,

Kara: 38:25

the Cadillac.

Misty: 38:26

And I was like, well, first of all, it seems like an archaic like illustration. Like do people still have Cadillacs? I don't know, but they're great cars. Right? But, no, I think their point was not that like one disability is better than another. That wasn't their point. Their point was. It's like the Cadillac in terms of resources, like we know more about like X, Y, Z because it's more common. It's one of the more, yeah. Right. And so, I want to, acknowledge that and say yes. Like I think, and even still in the Down syndrome community, we're fighting for more resources and more rights and more this and more that. And that's with. All we have. So I can't even begin to imagine the frustration, the isolation that one could feel in that like we're one in seven in the world, or we are in a much, more obscure place that not as much is known about. I want to say that out loud because I think sometimes you just need someone to say, yeah, you're right. It, it is different. It is different and it's different. And it's similar in that we all need support.

Kara: 39:33

Mm-hmm. We

Misty: 39:34

all need someone to say, I see you. I may not know your unique challenges, your very real challenges personally, but I know what it's like to feel like. You are alone. I know what it's like to sit in a hospital room and hear a beep, and the rest of the world is just moving. I know what it's like to tell someone my child has X, Y, or Z, and for them to say, oh, I'm sorry. Oh, and that look of pity. Ugh. There's a person alive who wants a look of pity. Like you want understanding, you want compassion, but you don't wanna. Like nobody wants that. I know what that's like. I know what that's like. And I think it's so important to gather your tribe of people who know what those similar things are like. It doesn't have to be exactly the same. It doesn't have to be a perfect match. It just means. I see you. I validate your experience. I don't understand it all, but I see you and I know what it's like to feel that isolation. I know what it's like to feel that fear. I know what it's like to feel unqualified. I know what it's like to feel like you're the only person in your friend group who is afraid your child is gonna get sick and end up in the hospital. I know those things and I wanna be here for you and I, I wanna sit with you and I wanna listen to you. And you can only have those things in community. You can't do it in a closet in your house. You can't. So that's why. It's so important to reach out, even if you're afraid there will, people will always say the wrong thing. You know? Like, like, ugh, that you don't know what it's like, or, you know, when people say, oh, I, I get

Kara: 41:23

it. Yes. Or they try to fix. That's the biggest challenge, right? Is like. The friends that are, are pretty good, but then they try to go into fix and you're like, no, no, I just need you to hold space for how I feel right now. Okay. Missy, you could not have said that better. I think that was so eloquently. I was like, man, I gotta, wow. Really, really well said. I'm not even gonna summarize'cause I'm like, I won't even touch it be, but I, I will highlight, I can't help myself. Yeah. It's like. You've touched on exactly what it is. It's, none of us have the exact same experience. Even, you know, one of, if same age as Jed, they're gonna have a very different experience. You are a different person, he's a different person, all of that. but being able to be known and understood. In that level of pain and grief and, different life than many other people are living is so important. And I am gonna put a plug actually for my community. it's a paid community, so it's called Path to Peace Coaching Community. It's where we bring community and the work that I do coaching together. So to do exactly what you just described, but in a way, coaching is inherently, a looking forward tool. Like where do we wanna go in our lives? How do we wanna feel? Who do we wanna be? and it's a big part of recovery. So grief is loss, but it's also reinvention of who you are and how you show up in the world. And so many moms lose their identity. Part of the becoming like, well, one, like keeping your child alive. It's real easy to lose who you are. very, very common. And it's the thing that I think will then, It's the seed that that grows into resentment, and that does not generally feel good for most of us. So most of us wanna way out and that's essentially what this community is about. So I'm gonna put a plugin here for myself. I. And know that it is gonna be opening up soon, in February. So I only open it a couple times a year. And if, your, the listeners here are, intrigued, there's a wait list. So go sign up so you don't miss out. So, I was, so in our conversation, I like to not pay attention to time and so we have to start wrapping up and so. Let's do that. And so I wanna make sure we do have space to, allow you to talk about what things you are investing your time and energy in. I know you have a book coming out. I'd love to hear a little bit about that.

Misty: 43:40

Yeah. Well, three months after Jed was born, I was. Going through hard things and I was obsessed with him. I was surprised at my, isn't it silly for me to say this, that I was surprised at my immense love for my child, but because I had so much fear and then I saw him and I was like, misty, like what on earth were you so afraid of? Like, that was my experience because I,

Kara: 44:08

well, I actually. To normalize that. I remember having my second son, who is actually Levi, my disabled child, he was not disabled. And I remember when I was pregnant thinking, how on earth am I gonna love this kid? As much as I love that kid. Like it wasn't, it was like, that's like kind of maybe a normal mom thing, but then you had all this extra. Data information in your head to suggest maybe you couldn't love him or maybe he wasn't gonna be loved as much as your other son. So that's, that's very understandable.

Misty: 44:33

Well, it knocked me over. It knocked me over. I looked at him and I was like, I could not love this child more if you, I just was, I knocked over by this love and. three months in, I woke up in the middle of the night. I'm a creative, so I get a lot of ideas at night and I was like, oh my gosh, I need a community. I wanna make a video of moms with their babies with Down syndrome, and I wanna sing. And I, like, I had all these ideas. Mm-hmm. And, and there's a song from your Good Man, Charlie Brown called Happiness. And it's all the simple things in life. You know, happiness is finding a pencil, a pizza with sausage, two kinds of ice cream. It's like all the simple joys in life. And I was like, that is Jed. That is Jed. It's all the extra. of like, where's he gonna go to school and is he gonna be successful and what will he do? And all that. It didn't matter. It was like, he's alive, he's in my arms and I see color. And like I was just knocked over by the simple joys. And so I was like, I wanna make. A, I wanna make a video that's highlighting that and I wanna create a community. And that's what Happiness Down Syndrome started from in 2021, I created a community on, Facebook and Instagram and I have connected with moms from over 36 countries. some that had never, didn't even know what Down Syndrome was until they had their child. Yeah. and have, built a community there. And that's. Become my heart's cry and I've done, I've spoken about it and I have built a community. And from that community, I was given this opportunity to write this book and it's called Happiness Down Syndrome, and it's about strategies and support for the Down syndrome community. And it comes out in August of 2026. And I'm just in the editing process now. So,

Kara: 46:14

exciting, exciting. Congratulations.

Misty: 46:16

Thank you

Kara: 46:16

so much. I'm like, wow. Well, I guess, I mean, COVID times were different times. So you were three months? I guess so. Yeah. No, we were deep into COVID. When you had, when you had him.

Misty: 46:25

Ah,

Kara: 46:25

and you started a community that is pretty, wow. I'm impressed.

Misty: 46:29

It's all I had girl. It was like, that's true. We weren't leaving the house. Like if you remember what social media was like in 2020 and 2021, it was booming. Yeah, it was booming because that's all we had. I didn't have a support group I could go to in real life. Yeah. And so I'm so grateful for that time and that time to cultivate. And then the years following of just being able to cultivate and connect with moms like you and the disability community and self advocates and all of that. This is all new to me. I'm learning on the job, and yet I feel like it's my heart's cry. I feel like it's, you know, my podcast is called Bold Voices, soft Hearts, and it's about finding your passion through pain. And there has been a part of me that has come alive. Through the painful diagnosis of my child that I've been able to tap into my gifts, and I see this in you already, like I've tapped into my gifts and I'm using them. Th through that painful experience and it's like my mission in life.

Kara: 47:24

Mm-hmm.

Misty: 47:24

Now you know.

Kara: 47:25

Exactly. Yep. I share that, with you. Mom reached out on, DM on Instagram last week, asking a question'cause she knew about a little bit about our diagnosis and she has someone similar and. I think she came, saying, oh, I don't wanna creep on, you know, ask questions or, or whatever. But I was like, I don't know. I left her probably like 10 voice memos after that.'cause I'm like, if I can help one person with knowing what I know about this thing, like it wouldn't, nothing would make me happier. So I think, and that, you know. There's so many moms like us, using their gifts and passions and, using that pain and using that as their purpose. And I, I think it's a beautiful thing. Okay, so I also realized. We are going to be meeting each other in person in May. I was like, oh my gosh, we gotta mention this. We gotta like, definitely make sure we advertise this. Okay. So, hope On The Hard Road is actually a local organization in San Diego, and, you are the keynote speaker at the upcoming conference slash retreat. I think it kind of morphed into a conference. It was more a retreat earlier. So tell us a little bit about that. and then of course, I'll share my role as well.

Misty: 48:28

I was on their, the Hope on the Hard Road podcast last year, and I just adore them and their mission and, I'm just so honored to be coming to speak and it's a lot of, it's gonna be about what we've talked about here, the community piece, the moving from me to we that it's so easy to swim in. Your own stuff and you forget that there's a world of other people who are struggling too and need you. You need them, and they need you. And that's when you can get into this rhythm of, you know, finding what you said, like tapping into what you're supposed to do in this life. We are not meant to just creep along. We can thrive and we can grow. You know, and I think that that needs to be said to the mom who's stuck in her bed. Like I was like, this is not the end of your story. This is not the end of your story. And so I'll be talking about that and community, and I just can't wait. I can't wait to meet you.

Kara: 49:25

I know, and I will be, I was asked to lead a breakout session, so I don't know exactly the topic, but it'll probably, well, it'll be fun. I can promise that it'll probably, not be me talking, to you for 45 minutes. It'll be, it'll be interaction interactive. Nice. It'll be, yeah. So that's, well, I mean, I don't know exactly yet, but that's kind of where I usually head is. Like we don't necessarily need more head knowledge. Usually we need to experience what it's like to feel how we wanna feel. Okay. The link for that, so the conference is called. Breathe. Yes. Is it, that's the name. Okay. So it's put on Hope on the hard road. You can look at that up. It's called Breathe. It's may, I think first and second. I will make sure we have a link to sign up or to get all the information on that, on the show notes. It's a very reasonably cost. I'm planning on being there all weekend. It's gonna be fun. So,

Misty: 50:10

breathe, refresh, reflect, reconnect. May 1st through the third. Yep.

Kara: 50:13

Thank you for that. Got it. All right.

Misty: 50:15

Yep.

Kara: 50:15

I was like, I was like, I'm picturing it. I was like, am I missing words? I don't know. No, you

Misty: 50:18

got it.

Kara: 50:19

okay, good. Well, Misty, it was so wonderful to talk to you today. Fulfilled, just so filled and so thankful. And, we will, we didn't get to talk about'em, but we will have all the ways to contact you on the show notes as well. So if people wanna reach out directly, join your community, do all the things buy your book. Of course, they will have an easy way to contact you. So, we'll see you on the next episode.