Every Mother Deserves to be a “Happy Mom” with Single Mother Shelley Frappier

This week's guest, Shelley Frappier, is a friend, single mother and former Pathway to Peace member. We talk all about her experience in Pathway to Peace, how she learned to connect with her feelings and how that one tool changed the trajectory of her life. She decided that she no longer wanted to be "unhappily happy". She knew that she wanted more for her life and for the life of her children so she took deliberate steps toward finding her joy again. Alongside her role as mother, she is also part of the executive team of The Cute Syndrome Foundation. The foundation is dedicated to serving children, like her son Nico, with a diagnosis of SCN8A and their families. We talk about the value of diagnosis specific communities and the honor I have of working with a SCN8A specific Pathway to Peace cohort.

Resources from this Episode:
Mitchell Thorpe Foundation

Connect with our Guest, Shelley Frappier:
previous episode: Episode 743: Stories Like Yours Recorded On-Site at Global Genes Conference
The Cute Syndrome Foundation

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

Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me

Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join

Transcript

Kara: 1:54

Hi, I'm 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 flair 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.

Kara: 3:07

Today I'm glad to bring you a conversation with my friend, Shelley Frappier. Fun, fun fact about Shelley is that she was one of the first students in the Pathway to Peace group coaching program. And, yes, you'll get to hear a little bit about that as part of the episode. Shelley is a self-proclaimed supermaman, and that is French for mom, which points to her roots in Canada. She's a super mom to her three beautiful and smart children. Her life, like many of ours, took a surprise turn when her youngest son, Nico, had his first of thousands of seizures and a diagnosis of SCN8A epilepsy, anaphylactic food allergies, autism and global developmental delay. Her goal, as she states it, is for him to live his best life. Other goals that she has developed along the way include helping families of children affected by SN8A live their best life and help their whole family. She wants to help make The Cute Syndrome Foundation, which is the name for the diagnosis community. She wants to make the Cute Syndrome Foundation a starting point for families newly diagnosed and her hope is to reach them as they receive this diagnosis.

Kara: 4:30

I asked Shelley to come on the podcast because I had a behind the scenes view of her life. I knew that she had made the decision to separate and divorce from her husband and since I know this is a real part of life for many of you, maybe you haven't made that decision yet, maybe you're contemplating it. I thought it would be great to talk about it, to talk about her experience, which is unique to her, and everyone's story and situation is unique, but I think as we hear other stories, it helps us ultimately know ourselves better as we relate to others. And you know what I noticed? We don't have great representation for single moms here on the podcast, so we're going to change tha t. Now, I think that's a great place to launch it in the conversation. Welcome to the podcast, Shelley.

Shelley: 5:17

Thank you, Kara, for inviting me. I'm really excited to be here with you.

Kara: 5:22

I'm excited for this conversation. I feel like it's a little bit podcast interview, a little bit of chance to catch up. and I mentioned in the introduction, we've had the opportunity to work together and also work together, as in you are an alumni of Pathway to Peace and also through your organization, we get to work together in a different capacity, so that's kind of cool.

Shelley: 5:46

It is cool.

Kara: 5:47

It is, it's right, okay. So let's talk a little bit. Give people a little day in the life, a little picture snapshot of where you're at in life now, but also go back. I think it's like 11 or 12 years. How old's Nico now?

Shelley: 6:00

Nico is 10 and a half.

Kara: 6:02

Oh well, look at me right in the middle there about your becoming right. So life was rolling along and you had the whole gig going on and then you had a surprise. So tell us a little bit about that becoming, and a snapshot of your life now.

Shelley: 6:20

Yeah, so that surprise, or that was Nico, and at six and a half months of age, on Mother's Day, 2015. Yeah, thanks, thanks for ruining Mother's Day for the rest of my life. Nico had his first of thousands of seizures. He went probably two and a half years of relentless seizures, medications, treatments, trying to find a diagnosis and eventually landed on an SCN8A diagnosis, which is ultra rare Now in the world. We're guesstimating about 1000. And we're about 300 in the US, so it is very rare. And right now, snapshot of my life is actually I'm living life and it's been really amazing. Nico is healthy, happy, he's 10 and a half, he's seven and a half years seizure free and lights up the room whenever he's in it and because I'm happy, so do I. So it's, life is good.

Kara: 7:26

It makes me so happy to hear, and not not just here, Cause I get to see you here and see the radiance, just like the splitting that you occur to have. Because I know it didn't magically come, it didn't just land on your shoulders one day. You've worked really hard for it, both in the recent time and I know you know much before that and you have two other children. How old are your kids now?

Shelley: 7:48

They are 14 and 12. And man are. We live in teenager life right now. Again, not easy, Not easy.

Kara: 7:56

It's funny my 11 year old turned 12 a month ago and I feel like it turned on like a light switch, like literally. I've told them like okay, what has happened? Because you have suddenly turned a little, a little spicy. And he's my most obedient child and so I'm like I can't lose you, I'm going to need you. I didn't say this to him, but I'm like I need you to stay just like you were. Puberty is not coming, even though it is, and so we'll get into more of your story as we go along. But I think also important to mention that you are now a single mom, single dating mom, correct?

Shelley: 8:29

I am, yes, I am, yes, yes, very much. Single's a weird term. I am not married, I am legally divorced, but I do have a person that I very much love.

Kara: 8:42

Well, I was gonna say I think, as I paused for a second, I was like wait single. But yes, you're at a different stage.

Shelley: 8:50

I am at a very different stage, very different stage.

Kara: 8:53

We'll hear more about that and I can see in your smile how happy you are about that.

Kara: 8:57

Actually, I want to bring everybody to the awareness that this is your second time on the podcast. Actually, your first appearance was back in October 10th, back 2022. And I had done this compilation episode of a handful of stories of people that I semi-forced into a room at the Global Genes Conference to tell their stories, and you so boldly shared your story. You shared about this day, this very pivotal day in your life, where you kind of wanted to quit all of the things, and you so beautifully described where you were at. You described how you went into the closet and you didn't want to come out and you didn't come out for a little bit there and you went to bed. You put yourself to bed in your clothes and it was so clear to you that it wasn't working, so you made some changes. One of those things was getting meds, and you're very open about that and I just wanted to kind of invite you to reflect on that story now and kind of what it's like to look back on that day today from where you're standing.

Shelley: 10:03

I would have to say, and still was my lowest day as an adult, as a mom, as a wife. I didn't want to do any of those things anymore. I think how I remember, wife, I didn't want to do any of those things anymore. I think how I remember it was I didn't want to make another decision, I was just done deciding all the things. I think it was the kids were home from school and what's for dinner. That was the last time I wanted anybody to ask me that question ever again. Nico was seizure free at the time, so I feel like we had just jumped out of living in crisis to trying to get a sense of normalcy. That was never going to be normal and I was tired and I didn't have very much help. I had a physical adult in the house but was always working or busy.

Kara: 10:55

And it sounds like you very much were carrying the load on your own and to me, the weight of all of those decisions and, well, everything that it takes to be a mother, let alone a mother to a child who has your son's syndrome, how clear was it to you at that time what help looked like for you.

Shelley: 11:20

It wasn't clear. Nothing is ever, even still, I don't know, but I knew I couldn't keep doing what I was doing. It wasn't working and I needed help. I didn't take any anxiety medication, for I actually don't know, it wasn't immediate, but it started the conversation, and it started the conversation with my husband that what we were doing together wasn't working. So it was the conversation starter about what more help looked like, what more breaks looked like, and that I needed to be on medication to help this. I think I started getting my emergency meds for panic attacks at that time instead of my day to day, which I'm still on the day to day, and not ever, I don't think I'll ever come off. I just like this, this Shelley, that's happy and carefree. Not really, but you know that sense of being carefree, I've heard it describes as you know.

Kara: 12:11

It kind of raises the floor a little bit. Like if you can picture somebody in the ocean wading into the shore, kind of raises the floor to keep you a little bit more elevated so that you can do the things that you need to do in your life, one of which is enjoy it or have the experience of rest and pleasure and all of those things. Okay.

Kara: 12:33

So thank you so much for sharing that piece. I think I love the way that you share that story so boldly, because I think not everybody's as vocal about one of their low days, but also like what really helped, and it was you know, it's not like a light switch fix that, like oh, this fixes everything, but you know to what we were just saying, it just kind of got you one step closer to being able then to access more support. So it was one piece of the puzzle. And so then, shortly after you share that story, you and I had a conversation about you jumping in the community and the coaching program that I offer, pathway to Peace. And I'm curious, if you look back now, because this is over a year ago much over a year ago now.

Kara: 13:15

If you look back at that time, what do you remember about? What had you think? Huh, I think this might be the next step for me.

Shelley: 13:23

It is hard to imagine exactly what that little piece was, but I was working for the Cute Syndrome Foundation in the SCN8A community. I currently am supporting families with an SCN8A diagnosis and I've really just needed an extra boost in my skills, my people skills, my productivity skills, my procrastination skills, just that day to day maintenance of, you know, not just balancing my life with my family in my children and my journey with epilepsy, but to better support families also with the SC8 AN.

Kara: 14:03

It makes a lot of sense to me. There's something that way back so long ago now, when I was doing my coach training program, they introduced this concept called leader care. Like you know, self-care, but leader care and it was presented with the idea that, just like you're saying, when you are giving and serving and leading at a higher capacity, your care for yourself needs to be at a higher capacity as well. It's almost like if you get like a really souped up fancy car, you can't put like regular unleaded in it. You got to get the fancy special gas. We just borrowed somebody's car that like was very particular on the gas and we're like my gosh, like this is a very high maintenance car, and so I think, like that sounds to me like kind of, where you're at is like okay, like I'm doing okay To your point. Like you had, you know, you got to seizure free stage, so you weren't living in day to day crisis.

Kara: 14:54

Yet, as we know, that doesn't mean that all of a sudden everything is easy, because I know Nico still has his disabilities and his needs. So you said, okay, I'm going to join this community, let's do it. What I want to share about you is that you, actually so many of the women, almost all of them, just are so committed and show up every week and with their pencils and pens and just ready to do the work, and it's just something I really admire about you that you took it on full force, took everything that you could. You very much were like I'm getting everything I can out of this. Obviously, you know coaching is an investment. It's not free and I think that you know you really got what you gave in terms of your attention and the work that you put into it. If you look at your life now and just kind of what you gained, or what you remember gaining, from the program and just from the last year of work, even that you've done, what do you notice?

Shelley: 15:46

I share my feelings and I let my feelings be felt. I think that is the biggest to. It's okay to cry, it's okay to be sad, it's okay to be angry. and it's okay to be all those three things all in the same day. To me, I think just feeling the feelings and letting them be felt is the biggest. And then, of course, there's all the little tools of, you know, planning the mental load. Like, when that mental load is so big, what do you do? Like, how do you take that one thing that you want to do, but you have 45 things that you need to do? How do you, you know, adjust that into a manageable chunk?

Kara: 16:40

Let's talk a little bit about that processing emotion experience. To what degree do you think before you were aware that this was something that wasn't part of your emotional vocabulary or your toolbox? Did you know that this was missing?

Shelley: 16:51

No, I didn't know it was missing. I didn't know and I'm shaking my head as you're asking that question going I had no idea. I didn't know where the feelings were. Even just mapping some of the feelings and where it was felt really explained a lot of my anxiety that I had been having in the past, like why you know why my shoulders sore, my chest is tight, or you know, I have a lot of feelings, I am a person of a lot of feelings and I never let them out, but I do now and it feels amazing.

Kara: 17:24

It makes me so glad to hear that and I want to kind of jump from this conversation to one that it just kind of makes me. The reason is I think they might be related is. you've given me permission to share all of this, and so part of your journey in the program was like you came into the program married, intending to stay married, and the way that you described it is that you decided to be unhappily happy, and I respect that actually to a high degree, that you recognize. Okay, this isn't ideal, but I'm going to, I'm choosing in and I'm accepting this. So there's some power in that. But pretty quickly on you decided that that's not where you were going to stay. You actually got really clear that it was time for you to not be unhappily happy.

Kara: 18:11

In the program. You got separated, then divorced, sold a house, bought a house and you, you we don't really graduate but you completed the program as a very happy semi-single meaning because you were dating somebody, woman and mother. That's quite a bit to happen in six months, which is crazy to even think about that, especially because here in the States divorces don't happen that quickly. So that's, I think, why it's also even like, wow, how did you do all that so quickly? But how much do you think this processing your emotions and learning, like you said, where your emotions even live? How did that partner with your journey of ultimately separating and divorcing your husband?

Shelley: 18:54

That's a tough one to answer, but I was really sad. I feel like I didn't know how sad I was about the life I was given. But it wasn't just the sad and the difficult part of raising Nico, it was what made me the most sad is how unsupported I was at home, in the place where I should have had the most support and love.

Shelley: 19:22

I realized really quickly on even going through the processes and I was always very open with my husband about what I was doing and what I was working on, and even in describing some of the processes or taking the moment to be sad, putting on the music and laying down and just letting myself feel all the feels that even when I told him how I was feeling, I still wasn't supported and it was kind of like that.

Shelley: 19:51

You know, I didn't want to be unsupported for the rest of my life and it wasn't that I had decided to be unhappily happy or happy to be unhappy. It was that, you know, I was hoping, through the processes of therapies and talking and which we had done twice over a period of five years, this wasn't a decision that came about in six months. It was. You know. We visited the conversation of divorce five years previous and we had talked about that idea of this might just be a difficult five years in an 80 year marriage like this. You know, if we could just get through this tough period and be unhappy but know that there's, you know, green pastures on the other side and we could be married another 75 years, and it would just be bliss. But my awareness of my feelings and how I met this support was really let me know that this isn't something that someone just changes and I wasn't going to be okay with that.

Kara: 20:55

Yeah, Isn't it interesting how something like becoming aware of how sad you are and feeling those feelings can be something that actually opens up your life and processing them to the conversation about your separation and then now you're in a very happy relationship, because I think it started with that sadness and opening your heart to feel that extreme and now to see the degree on the other side of happy and, like I said, radiance that you are exuding? I don't think they're unrelated. What do you think?

Shelley: 21:42

I definitely agree with you, but it's hard to put into words, you know, until it's described to me how you just described it. I wish I had known earlier how sad I was. You know, maybe I could have been happier a year sooner, or you know. But call it fate, you know things aligned and the timelines aligned and life is really good.

Kara: 22:09

it's conversations like this where we get to kind of look back and be like, oh yeah, that makes sense.

Kara: 22:15

We don't often take a second or an hour, in this case, to pause and kind of look back and to wonder and to kind of be in awe, and so that's what's kind of cool about these conversations. Yeah, it's one of those things where you know I guess it's so cliche, but hindsight's so 2020, we're like, of course it makes sense. You know that I tapped into really grieving and grieving the marriage that wasn't there, ultimately, to take the step to choose to end it, and then what that opened up for you. So continuing on in the area of talking about marriage and becoming a not married mom, and choosing to kind of disrupt right, Because I think there's something about not being good, but it's like I guess they say it's the devil, you know right and choosing to step out of that stability, even though it wasn't good. And I guess the question I have for you is what can you see now on the other side of your marriage that you couldn't see then? What do you see now?

Shelley: 23:17

I feel like for me, the feeling supported and loved physically I didn't realize what I was missing for 15 years that is probably bringing the most radiance to me is just that you know one, having someone physically there for you, but also the pleasure sexually of having somebody that is there for you in every aspect of life, is just bringing so much support. The financial things, material things, don't matter. I have a moderately good job but I am able to pay for my home and all my bills and my food and for the kids to do some small things. But my car is still broken, but it doesn't matter. We didn't go on a trip this year, that didn't matter. The kids have a happy home right now, and having a happy mom is just so nice. and his support for my whole being allows my kids to have a happy mom. So I haIt ve happy kids. So I'm happy, my boyfriend's happy, we're all just. it's beautiful at home right now.

Kara: 24:53

really hard this idea of having a happy mom. I'm trying to think of the way the cohorts overlapped, but many of the conversations we have in Pathway to Peace our moms expressing their it's grief, it's shame, it's embarrassment for how they show up to their kids, and first I want to normalize this, but I want to acknowledge the weight that that is to carry as a mom. So not only are you not happy, you have guilt about how you're showing up, and here's the good news of this conversation is, it doesn't have to stay that way, because you are our example of that today, that you doing some really hard things. Going back to the conversation about one of those things was feeling the depths of your sadness. That opened up this access for you for happiness, and, let's be clear, you're not happy 100% of the time. 24 hours a day, oh no Right. I think people get that right, but I just want to make it clear that the difference is, though, is that you have balance, that you have this high happy hope, even when things then are. You know dark days, hard days, you know when maybe you kind of bummed that you didn't go on vacation because you know that might be, and you'd still choose that, choose your state right now, over having the luxurious luxuries that we might have.

Kara: 26:15

If I could give every mother a gift, I would give them the experience of being a happy mom. Because here's the other thing that's so interesting Every mother I talk to, myself included. What we really really want and we ourselves for it is for our kids to be happy and healthy to their capacity and to live their best life. I believe that one of the most important aspects of having them achieve that is drum roll, please. Exactly what you just said right, it's being happy yourself. Yeah, do you think, looking back to some of those hard years, you know that you fought for your marriage for five years when things were really hard. Do you think that you had any idea what was possible for, how happy you could be right now? No, I think you're like no, what was like the best it could be.

Shelley: 27:12

I'm not joking that if I could have my cup of tea at the right time, I was living my best life. Because even back then, when I acknowledged you know and to say this to all the moms out there, you're right, this wasn't an overnight or six month change, this was a I'm choosing to have a cup of tea before I walk to pick up the kids from school, or I'm not going to make it through school pickup. I am going to have a cup of tea before I tackle putting the children to bed, or I'm not going to make it through bedtime, but also, at the same time, being told, just have your tea after they go to bed, same time being told, just have your tea after they go to bed, then you can relax, do the work, then relax. I was like, Nope, I need to have it before I do the work, or I'm not going to physically get through or mentally get through the work.

Shelley: 28:01

And it's funny how unsupported and taking a cup of tea I was five years ago at the timing of my cup of tea, that, yeah, how it's changed, but it started with a cup of tea. And I think that's the thing I tell a lot of moms that are really on the closet floor, as I was years ago. When you're on the closet floor, you're not going to be in the throes of passion in six months. You're going to start with a cup of tea on the couch at the right time, or saying no to an activity that you really don't want to do. Sorry, the tea first. Then you'll be able to say no to the activity that you don't really want to do.

Kara: 28:40

It sounds like that was a specific conversation about you, and the image or like the words that come to my mind, is like you clawing your way back to yourself, that insistence that you were going to have your cup of tea, because that was the thing that you needed. And, yes, it was small, and even as small as it might have been, it still sounds like it felt a little bit inaccessible, or rather it was unsupported, so therefore it probably felt pretty hard.

Kara: 29:06

But, your insistence that you would have that, that you deserve. That, I think, was that baby step that trickled and trickled and trickled and then ultimately led you to getting more and more support, and I think that's a beautiful journey to look at. You know, what do they say? It's like that hole in the dike right that starts very, very small, but then it starts to blow open, and that's that's kind of how I see your journey.

Shelley: 29:32

Thank you and I love that you've been a big part of my little journey, helping me and supporting me through the whole thing.

Kara: 29:40

I feel like I have the best job in the whole world because I get to be first, first in line and the words aren't coming to me, but I get to be like the witness of the transformation and I think it's like to witness the power of woman to me is inspiring, and to be any little part of that to reflect the power that the women that I work with already have.

Kara: 30:04

My job is simply reflecting it back to them so that they can see it again, and I think that very much was the experience that you had.

Kara: 30:10

So I don't want to say it's an easy job, but it is a job filled with joy and I'm going to put in a big and here the and here is we're going to shift the conversation to another part of your story, of our community's story, that is, maybe the parts that are so hard to intellectually grasp is maybe the parts that are so hard to intellectually grasp, even put words to.

Kara: 30:35

And your community specifically has a syndrome that has a big variation in how it presents and part of that is that many children of the SCN8A community they pass in their early years and at the time of this recording we are collectively grieving the loss of a little girl, and her mom was part of our community, specifically in the Pathway to Peace and, of course, in your wider community, and so this is something that you hold in your role. So in your role as work, it's a big part of what you hold, but also it's part of your community, your diagnostic community. I just am present to the spectrum. You know that we are present to now, that we have this joy and this happiness that we're talking about and what you've clawed your way into and to accessing your power, and to the extent that we are experiencing really hard things and things that we can't answer, I don't think as humans to understand them, and I guess I just wanted to get your current thoughts on how you handle that for yourself and for your community.

Shelley: 31:45

It's so difficult, and all of the losses that we feel in the SCN8A community are felt as a community so beautifully that upon learning of a loss of a child, the death of a child in our community, a lot of times it's a parent messaging me directly, calling me directly and personally me then having to inform the rest of the community, being the bearer of bad news. But on the lovely side is that we can grieve together, whether that's a quick Zoom call to just cry openly about how unfair life is and how sad it can be, and collectively come together on ways to support each family in their uniqueness, whether it's burial costs, a meal, flowers. It's hard. We are really sad. Today the anniversary's come up. We have another really hard anniversary coming up this month. A very close friend lost their daughter and it will be her fourth birthday at the end of the month.

Shelley: 32:54

But I'm not alone in this grief, which feels so good that at any moment I can call any number of women and just grieve together. But on the work side, this awareness of this grief has led us to create a grief support community and provide free grief support for families with SCNA Day. So we're having either one-to-one or group grief support, but also new program of helping children with loss, so educating parents on how to talk to their children about their feelings and sadness with grief, and not just in death but in the loss of a future that we would have thought we had before our children was born, or the loss of a marriage. I grieved, and still grieve for my marriage because there were a lot of hopes and dreams that I had for my family and I grieved that loss. And being able to provide those concrete supports for our families is amazing and it's only through feeling these losses that we're able to acknowledge it and then provide it. I'm only hoping that we're doing enough to keep families feeling supported.

Kara: 34:10

Well, I'm present to how much you are doing, and it's just amazing to hear about this community that exists within your community, specifically the acute syndrome community. that you're not just meeting the needs of the research and of the how are we actually caring for our children? What do you do when? But actually looking to the less tangible maybe, of how we support human beings through these experiences and I love that you're looking at supporting kids, because you and I both share having children, siblings, that are affected deeply, and that's one of those things that it's hard to navigate, right, you can't force support on your kids, and yet I think we're witnessing really difficult things, and I even just you know one of my children, one of my younger children I'll mention that because the things that they say are so unfiltered and they're so true, and this kid will say just things like I wish levi never had a tumor. And this kid will say just things like I wish they've I never had a tumor. Right, yeah, me too. And it's actually so refreshing when you hear kids process because they're not trying to do it right or say the right thing, and so I find it to be really, really refreshing, and so I'm so glad that you have the support Back to the community that you referenced, essentially having a community in grief. I'm wondering what your experience? I'll share my experience and I'm wondering if you're similar.

Kara: 35:37

So one of the mentors that I have in my life, her name is Beth and her organization is called Mitchell Thorpe Foundation. Her son is Mitchell and he passed gosh it was probably 10 years ago, 12, 13 years ago now, and he was 18 of an undiagnosed illness and she started this foundation. It's a foundation that has hugely supported our family. I want to say it's saving our life. Doesn't feel like that big of an exaggeration. Beyond the financial and the spiritual and just the general emotional support.

Kara: 36:10

I was able to witness her living her life with joy after the passing of her son and having a son that I found myself with early on. She was the only point of reference that I had for somebody that had experienced this thing that I was potentially facing. You know when you hear your kid has brain cancer, you know it's hard not to go down that spiral of what could be. So having her as somebody that I could look up to and witness her living and her being like okay. even now, like it, brings me a lot of emotion because I'm like, okay, we'll be okay. and so I'm wondering if that's similar in your community, that as hard as an unwishable it is on anybody, that it also still there's so much hope even in that deep, deep pain. What's your experience?

Shelley: 37:06

I'm gonna have to say very, very similar, you know, especially in within the foundation. You know, two of our five volunteers are bereaved moms and they show up and they're here. One took baby steps to to get here and the other was there from the beginning and yes, they need a little bit extra time at certain times, but they're the first ones to. You know, especially with my role in the bereavement community, they're my touch points of conversations and how do we talk about this, or is this okay to mention? And they're so open and honest with me about you know, well, this didn't really help, but this really did help. But also, like you said, that there is life after and I'll get through it too.

Shelley: 38:01

Because, even though Nico is healthy today, you know we don't know what the future looks like for Nico also. For Nico also because we're guesstimating. You know, half of our children die of SUDEP, which is generally uncontrolled seizures, but relatively healthy kids are still passing Nico's not out of the woods. We, you know, we give him a kiss every night with love, and I hope he had the best day ever, buddy. But to know that you know a lot of our, oh my gosh and I forgot another parent volunteer. They show up. They show up every year to the gathering and it's there's still such a huge part of our community that it's such a blessing.

Kara: 38:45

I hope that listeners are falling into two categories. One is that they're like I have that community too, and the other category is I don't have it yet, but now I believe that it's possible and I'm going to take steps to create it. And if you're in a different category, consider stepping into that latter category that I mentioned. Okay, leaning towards wrapping up here, but I do want to mention something, because you know we're talking a lot about community and support and, as a result of you and I working together, I think we created something pretty epic and this is my opinion, but I think you share it too and what ended up happening is that we designed a what I call it a diagnosis specific community cohort of Pathway to Peace.

Kara: 39:32

So what that means is there was a acute syndrome Pathway to Peace program and that's so cool, right? It was like a light bulb for me because I'm like, wait a second, it takes the community element and it just puts it on steroids. Because, yes, I do believe that all parents that are parenting diagnoses as in learning, disability, neuro diversity, medical, all of it I think we have a deeper understanding for living the alternative parenting lifestyle, but I think when it's like your specific diagnosis. It just takes it up a notch. So over on the inside for you what you get to see in your community of being able to offer this. What is your experience?

Shelley: 40:14

I guess it would kind of mimic what you see on the other end of these families or these mothers feeling a need for a program or feeling that this is right for me and joining it and seeing who they are on the other side. you know confident, productive, you know happier moms, and you know to be able to support that both financially and logistically. It feels so good because I know, cause I've been through it and see the other side of how amazing it is. I was just so excited to share and now I want to jump back into. You know there's always room for a refresher, so I'm hoping to jump back in, but I love being able to share your program, the pathway to peace, with other families and it's just, it's been perfect.

Kara: 41:07

Thanks for being a partner in that and, of course, you and Casey. It's just been so fun to kind of see it unfold. I don't know the synchronicity of the way that it all worked out I think it's not by chance and we're on a second cohort now and what's really cool is that by coming together and partnering on this, you're able to. It's like a win-win-win right, so you as an organization can offer this benefit. The participants get essentially scholarship, they get financial support to be part of the program and I get to just watch it all happen and then do what I do and coach them and create the space. I think you have a really, really, really amazing community that you guys have built, and so really well done, I am always impressed by you and what you do and how you show up.

Kara: 41:48

So, as we wrap up, is there anything on your mind or on your heart that you feel like, oh, I didn't get to talk about that or share something?

Shelley: 41:55

No, I'm just, I'm so happy right now, kara. and you were a huge part of that, and it's not like you gave me something or did something to me. You just shared with me things that I already knew or was feeling, and just helped me to share it or helped me to know what I already knew, but gave me some tools to be able to reflect and share, and that's just so lovely, thank you.

Kara: 42:23

I'm so glad to hear that, especially as a coach, I'm always like when people say, oh, you gave me the best advice, I'm like, ah, that's the exact opposite of what I ever want to do.

Shelley: 42:31

Yeah, not once did you say you should do this or you should do that. I t was like what are your feelings? And it was those awful questions, like I don't like being asked what are you feeling right now or where do you feel it. I'm like I don't know, I don't know. But to sit a little bit longer, right, Sit a bit longer with it, and it really take a moment to reflect on what I really was feeling or what I needed to feel. Or being just told it's okay to feel sad, you should feel sad, just go be sad, you know. Just let the emotion go through the tunnel and it's like okay, sure, because my parents sure as heck didn't say it's okay to scream and yell and be mad, just don't hurt anybody. And now my saying with the kids too is like it's okay to be angry, just don't be hurtful, just go be angry over there.

Kara: 43:24

My daughter was sharing with me about her journal and was sharing a little bit about some of the details in it, and I was just asking about it and I'm going to keep the story vague because I want to honor her privacy but what she looked at me and said, mom, it's okay for me to feel my feelings. And I just I couldn't be more proud when I hear my kids say that, because I'm like, okay, if you're six and you got that figured out like you can figure out anything, because it really is kind of the foundation for so much. Because I'm going to end on this note that when we connect to our feelings, we connect to ourselves. When we connect to ourselves, that is where peace is accessible. Just newsflash to like get to the end. That's where we're going, ladies and gentlemen, but I think that's the journey that I got to witness, you experience, and so it was such a privilege.

Kara: 44:16

Thank you for coming on the show and sharing your life, but obviously allowing me to kind of share a little behind the scenes of Pathway to Peace. And so, yes, if you are listening to this story or this conversation and like, okay, wow, yeah, I want this in my community, definitely reach out. But also, if you don't have that community and or it's inaccessible for whatever reason, consider saying okay, I'm interested in knowing more, just like Shelly did. You know we had a conversation. She's like yep, that's what I want, and jumped right in. Okay, we'll talk again soon and for all of our listeners out there, we'll see in the next episode.