Together is the Only Way (A Community Huddle Episode)

In this week’s community huddle, we dive into a heartfelt follow-up on loneliness and grief—topics we’ve explored in recent episodes. Picture this: a cozy space to connect with moms who truly get it. We talk about whispers of grief in everyday moments, how resilience sometimes feels like a mask, and finding strength in vulnerability.

I’m joined by Shantay, Alyssa, and Annika, three incredible moms who open up about their unique parenting journeys, the unexpected emotions they’ve faced, and the power of shared community. We also touch on creating safe spaces, both physically and emotionally, and the profound impact of feeling truly seen and understood.

Whether you’re listening on your way to an appointment or with a warm cup of coffee, this episode invites you to reflect, connect, and feel supported in your journey.

Let’s keep the conversation going! Got thoughts on this episode? I’d love to hear from you. Shoot me a text!


Episode Resources:

• The Wild Edge of Sorrow by Francis Weller
• A Special Needs Mom’s Gratitude Journal by Amanda Owen

Guest Details:

• Shantay Hindia: Mom to an 11-year-old daughter and an 8-year-old autistic son.
• Alyssa Meyerhofer: Mom of three, including Gabby, who has Trisomy 9p.
• Annika Atkins: Mom of 10-year-old Ella, diagnosed with Infantile Pompe Disease.

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

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Transcript

Speaker: 0:05

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.

1:14

Before we get into the community huddle, I want to share with you a little. About a brand called cozy earth. This brand has partnered with me to partner with you on getting. The softest things that you'll ever feel on your body or. On the bodies of those that you love. I want to tell you about two specific things that. I think you should maybe consider starting which. It would be the studio jogger. I can't even. I tell you how soft these are. They are perfect for the lifestyle that we have am. And also the women's studio light crewneck so it's a nice accompaniment also the softest thing that. You ever will feel. Okay. Now the timing of this episode. Probably is going to have you thinking about. Christmas shopping. And I want to have you consider That these products would be really good. Christmas gifts. Gifts and their slogan is Wrap the ones you love. Love in luxury with cozy earth. So they have agreed to give. Our community And exclusive up to 40% off. Discount code and. And it's going to be S N M podcast. Special needs. Mom podcast. And you can use that to buy for yourself. Hopefully, and those you love. Okay now. Now let's launch into our community huddle. Hello and welcome to the special needs mom. Podcast. Today's episode is a community huddle. Style. Style episode and consider this the kind of episode. That. You make yourself. A cup of tea or cup of coffee. And you sit around with a gals and you connect. Connect. I know that sounds so idealic and that's not how our lives usually look. And you might be racing to an appointment, but that's the picture I want you to have in terms of the experience that we're generating in this episode in terms of being. Being with one another in a meaningful and connecting way. The topic that we focus. Focused around is kind of a follow-up conversation from the previous episodes. in the last month or so about loneliness and grief and. And all of the things, so. I thoroughly enjoyed. Being with these women. And I know that you will too. If you are wondering. Like, how did these ladies get the goods on showing. Up to this community huddle. And you want to participate in something like this as well. You are going to want to get on my email list so that I can. Let you know, that is how I update people that are not in my, paid for groups. But this is something that I offer the community at large Ana. And would love to have you join us. All right. That feels like a great place to launch. So with that, Welcome to the community.

Kara: 3:49

Good morning and welcome to the community huddle. We're going to start with introductions, like I said, my name is Kara. I'm the host of this podcast. I have children ranging from age 17 to age seven. I just love that there's a 10 year gap. It just. It just feels so neat and buttoned up for me. And my 14 year old son is my disabled child. He became disabled when he was two. with, the occurrence of his first brain tumor. And our diagnosis include vision impairment, hemiplegia, panhypopituitarism, hypothalamic obesity, cognitive impairment, impulsivity. That's a big one. And our newest. To the club is autism. So, I have to do kind of like a body scan to think about like all the different areas that he's impacted. a little bit more about me is I am married to my college boyfriend, Dan R and we're just about to celebrate our 21st anniversary. and to start this, episode and that kind of to give us more robust introductions, I thought we could all share, something that has as present to some of the aspects of grief and loneliness. And for me, I shared a little bit with the girls before we, started recording that In the last week, my son, lost his school that he had belonged to since he was in kindergarten. And so there's a lot of complex emotions, a lot of grief, a lot of anger, a whole lot of anger. And it was not a choice. We were definitely, not, steering the ship and this decision. And so, being kind of pushed in the land of unpredictability and unknown, not of our choosing, enter in grief and anger and all the feelings that we often have in all the different aspects, whether it's medical or behavioral of special needs parenting. So That's what I wanted to share to start. And so I'll ask each of you to do similar type introduction so that as we get into the conversation, the listeners can kind of get a context of where you're coming from in your stage of life, so Shantaya, will you go first?

Shantay: 6:01

Sure. Hi. So I'm Shantay Hindia. I have two kids, I have an 11 year old, neurotypical daughter and my son who's eight, is autistic. and I live in California. I've been working with Kara for over, oh my gosh, over a year now, which is helpful, but we should celebrate

Kara: 6:20

anniversaries. Sorry. Anyhow. Balloons. Yes. Flowers or something.

Shantay: 6:25

Yeah. But I guess in terms of your question, you know, I took the kids last weekend to a water park and we did a whole thing. My daughter's best friend was there and we surprised them. So it was four kids plus the parents. and it was great. It's about it. I walked away, you know, a little sad because you see all the kids and they're running around, like freely running around. The parents are kind of just sitting back, you know, chatting, not paying attention really. But I couldn't quite do that, you know, I still very much had to make sure that he was okay and that he wasn't overwhelmed and you know, you, walk into a room and you think of like all the possible triggers like it could be too loud. It could be too crowded. You got to kind of brace yourself and plan for what you what you need to do if something happens. So there was a little bit of grief there. Like, I think he had an amazing time, but will it ever get to the point where I can sit back and let him freely run around this huge space and not worry? Like, I don't know. So, that's my, recent moment.

Kara: 7:36

Thank you so much for sharing that. I think what really stands out to me is the, everyday nature of that, it was more of a whisper of grief and more of that like constancy that this is always their part of your life. And I think, you know, if we go back to the episodes where, you know, hopefully a lot of you are listening. Now we'll have listened to some of the previous episodes on the topics specifically of loneliness and grief. but I think a lot of people kind of look at it. It's like this big event thing that happened to cause grief, but you've described something that I think we are all experiencing so deeply. And it's those little whispers of those everyday moments that we have this recognition of something that we don't have and we desperately would love to have. So thank you so much for sharing. All right, Alyssa, will you go next?

Alyssa: 8:25

Yes, I'd love to. so my name is Alyssa Meyerhofer. I live in Minnesota. I am a wife to my husband, Adam, and then we have three kids. So we have, first grader, a preschooler and then Gabby is two. So Gabby has trisomy 9p. So it's super rare. There's like 340 people in the world. So you go to appointments and they're like, we don't know anything. Like there's like one resource from Europe on it and that's it. So she's globally delayed. she has like a slew of like other medical issues. She wears like a hip brace for like 12 hours a day. she has enlarged brain ventricles. So we don't really know like what her plan is going to be in life. Like if she's going to walk or talk. I think she will walk, but she may need assistance. And she's just kind of starting to use a gait trainer and a little more independently. So that's exciting. She's kind of been up for like 45 seconds a day on her own, like crawling up into it. So that's exciting. I'm a nurse. We live on a farm, so my husband does corn, beans, and hay. And that's about it. Oh, I'm writing a book. So that's super exciting.

Kara: 9:30

Wow. Congratulations.

Alyssa: 9:31

but I think to answer your question, I think like the grief and the loneliness. So like, right now I would say that I'm having less of that. And I think that's because we're seeing Gabby's having like these huge strides, right now. So she's physically doing more and like using her gate trainer more. I mean, definitely you go through like those. ups and downs, right? So, she did intensive physical therapy in January for, like, a whole month and then refused to come home and use her walker for, like, eight months. And so she's just starting getting back. You know, we have, like, a lot of these exciting things going on and she's verbally trying to get more out. But then, you know, other things that are affected, so like right now, she's like super, she was impacted with stool over the weekend, and then, like, she's full of stool, so we're doing like a huge bowel prep this week, so like, out of any of my friends, no one, I mean, my other kids had constipation issues, but like, no one that I know of personally has had to put their kids through like a bowel prep and like clean them out completely. You know, so I think like when I was talking to people about it this week, it was like, Oh yeah, that's a lot. And then it's like a four week program we have to do after we clean her out. and so I think like I was good. And then, on the way home one day, it was just like, this sucks. that we have to deal with this as a family and like, just how it like affects your other kids. the mental load it takes, I think, also, like, and how it affects everything else you're trying to do. so I think that really, and then you, you know, like, when you go through those situations, you're trying to, like, best navigate it for yourself and your family, right? So, we live in Minnesota. I'm a nurse. So, if anybody's, like, involved in the healthcare program, like, healthcare in general, have you ever heard of Nurse Blake? He's, like, a comedian. He's really funny. And he's coming here on Friday or Friday night. And so I had like, plan to like, we're going to go out to dinner and then I'm going with a group of girls to the show. And initially we were like, okay, do we plan, do we start this prep on like Tuesday and hopes that it'll be done by Friday so I can go or do we start at Friday night? So then we had decided, okay, we'll wait till after the show and then we'll do it. Then we'll then. Yesterday it was like, okay, this isn't gonna work. We're gonna have to do it now. And so now we're currently in the process of it. But it was just like, you know, you're planning your life event, like, you know. Everything changes. You can't have, like, a consistent, you know, you have to be flexible. And everything, you know, things come up and then you gotta deal with that, that you weren't planning on. So I think that's, like, the grief of that and, like, dealing with Not that other people don't have things that come up. I'm not saying that. But it's just a little different, I think.

Kara: 12:12

Yeah, I think it is. I mean, it is a little different. I think, you know, again, not devalidating everybody has challenges, right? and these just happen to be yours and ours. I think there's an aspect you've hit on that, It just, I want to highlight it because I think, you know, like you said, nobody, you know, has had a bowel prep their child. And so your friends, your community in, you know, your kind of immediate circle, you tell them that, and they don't know what that means. So therefore they can't really conceptualize how big of a deal this is and how much it changes and impacts your life. And yes, probably you have people that you'll, you know, hear it and, share the story. And then they said, that's a lot. But also like I think there's many things in life until you see it firsthand. You can't really understand like how you know

Alyssa: 13:00

I'm a colorectal nurse So this is like not a new thing for me granted new on a kid I've never done it on a kid before but like I work in colorectal so like I can handle the bowel prep But it was funny like talking to my co workers about it. They were like Oh, man, you know, are you gonna put, like, a tablecloth under the crib? And what if you wake up and she's just, like, covered in poop and it's, like, all over the crib? And I was like, no, I didn't even think about that. But you know, like how we, you know, would prep for a patient, you know, you, making lots of layers, making lots of layers. So I was like, Oh, I didn't even like think about it. So it's funny to have that aspect of it too, because they like, they know what's coming. And my husband, he doesn't know what's coming. Like, he has. No idea what's about to happen,

Kara: 13:45

what a thing, what a thing to just be working on right now in life. Yeah. okay. Well, thank you for introducing yourself and sharing just kind of where you're at. and thanks for being here. All right, Annika.

Annika: 13:56

Okay, so I am Annika Atkins. I started working with you I think in, was it 2021 or 2022?

Kara: 14:05

It might've been 2021 fall. that part's

Annika: 14:08

a little,

Kara: 14:09

a 2021 at the end of the year is when Levi got diagnosed with a recurrence. So,

Annika: 14:15

I think it was that or like a little bit into 22.

Kara: 14:18

It might be. Yeah,

Annika: 14:20

it was a blurred time for us both it was a season for sure. but a little bit about our story. I have my husband. I have one child who is Ella and she is 10 and a half. She has infantile Pompe disease. diagnosed at. Four months of age. So at that time, had a perfectly healthy baby at birth and then she just started to fail around that four month period. And so sent us into ICU and trying to figure out what this was. Thankfully, we were able to have, support by a team that could figure it out pretty quickly. Now they're doing infant screening, thankfully, and they're catching this much earlier, but at our time, that wasn't available. so she's gone through two bouts of emodulation of her immune system because her body, she has one way of treatment, which is, through an infusion. So her body doesn't have the gene that processes glucose. So sugar starts to store up in the muscles and it basically, you know, kills muscle tissue, any tissue within the organ. So she has, gone through quite a bit of change over the years. I mean, as we all face like, you know, highs and lows, she's really at the beginning, we were pretty successful with getting on top of like resources and we had a good team. She was within the realm of Pompeii doing pretty well. And then, when she hit about eight, that's when her body started Creating antibodies. That's what I'm trying to say against the medication that was keeping her going. So she started to quickly fail and that was really traumatic and, came with a bunch of different unexpected. So, I guess I want to back up though, because I didn't really introduce my husband in this whole thing. Cause he is definitely my other half. So I am married to Shane, our stories we were high school friends. Then we reconnected, 15 years later through

Speaker 5: 16:22

Facebook.

Annika: 16:29

So yeah, we're the old school. But anyway, so he's been on this path too. He's an airline pilot. So that comes with challenges of him being here and not, before I was in this journey, I actually was teaching medical ethics of all things. So dental and medical, mine was geared more towards dental, but, my world has changed so much because I'm living it, which is so different than speaking about it. but going to the concept of grief and what I'm really feeling right now with the whole thing. And, you know, it's kind of relating back to an experience, with Ella just having an eye exam recently and seeing significant change with her eye exam. And, you know, it's just so interesting because I've been through so many. Experiences with shock and away from the healthcare side of things like the person administering the test or whatever and I'm like Yeah, that's my world man, you know big change is pretty quick, you know that we don't exactly know why things are changing the way they are, you know, what's impacted it She went through chemotherapy last year Is it that is it the disease? but I think the grief is Part that I'm really sort of surprised is it's bringing up stuff from like the past So, you know my funny statement of like a bog of eternal stench. I love labyrinth as a kid. It's a movie Wouldn't necessarily recommend it but in it. It's just like this thing of like things pop up, you know this stuff it's kind of sticks to you and This trauma that comes from like childhood. Like I was relating it to this experience. I had a six or seven that. Why am I thinking about or dealing with that on top of everything else that I'm dealing with in this moment? So oddly enough, and I examined in the you know, seeing significant change isn't a big, huge thing on the grand scheme of Ella's health journey, but it brought up all this other stuff that was like something that happened very early on. So, processing that, seeing grief is like this thing. odd thing that like pulls different parts, at you that you need to heal. I guess that's really kind of it, or at least I don't know if you completely heal, but like put a cocoon around it so that you can sort of help process. So in my own personal journey, I'm working with the therapist of really learning how to process. And I'm such a physical person. I know we talked a lot about this with you, Kara, you're the one that's got me going on this. I hated it at the time but it's really been the most impactful thing of like physically feeling it

Speaker 5: 19:12

because I'm

Annika: 19:12

great at pushing things down but yeah I don't know if that resonates with anybody else but just how grief pulls things up that are not necessarily what you're Dealing with right at the time.

Kara: 19:25

No, actually, that's such a great point to bring up because I think that maybe would surprise a lot of us, until we're experiencing it. And then it, I don't know if I'd say it makes sense, but it is common phenomenon in grief. And I was actually looking for a a quote that actually addressed that same thing. even just further emphasizing that this is a very like, I'm sure even your therapist is like validating, like this is how it goes. It's like, it's touching on a hurt from the past that maybe was. bubbled, like you said, like maybe you just conveniently tucked it away and the experiences that you're having now are kind of opening up that bubble and leaking out. And so interesting then it's like, almost like it's bigger than it might've been if we processed grief all along. And I think, you know, you said, you know, healing grief, I don't know if he'll, you know, I, I won't say if that's the right word or wrong word, but I think that it speaks, I think, to the misconception that, we grieve and then we're done and then we move forward and I think so, like, healing grief, I would say, is like creating a different relationship. Yeah. With what we're grieving. And so I think there is an aspect where things start to feel settled or that relationship just feels more, balanced, I don't know. But I think, yeah, to your point, like sometimes we're then doing, more in terms of addressing grief when even little things come up. So thanks for bringing that point up. Okay. I'm going to read a quote. from the book, The Wild Edge of Sorrow. This is by Francis Weller. It's a book I refer to a lot. It's, I should say the subtitle. Is that the right language? Yeah. The subtitle is Rituals of Renewal and the Sacred Work of Grief. And I really love this book cause he really, he talks like about an apprenticeship with sorrow and it really changed the way I think about grief and really kind of helped me usher into this, kind of bringing grief closer. And so I'm going to read this quote. We often hold grief at a distance, hoping to avoid our entanglement with this challenging emotion. This leads to our feeling detached, disconnected, and cold. At other times, there is no space between us and the grief we are feeling. We are then swept up in a tidal surge of sorrow and often feel as though we are drowning. I think what he's pointing to or kind of helping give voice to is like, there are events that happen. I think that do sweep us away. I can think back to the day of diagnosis where. there was that tidal wave, you know, like where it was all the emotion at once. there was no bubbling, but then I think, you know, even like Shantae, like you described like this, such a less tidal wavy moment, right? Like where there's, there was just like this subtle knowing. and so first I want to just kind of open kind of an open dialogue about this quote. and if there's anything you relate to or kind of. Or taking from it, I'm interested to hear if, you know, cause it talks about this feeling detached, disconnected and cold. And what I notice, I guess we can call it a pattern at this point. We've been, for myself, we've been through so many, what I would call big, very scary medical, stuff. And I happen to be quite skilled. at the, kind of going into survival mode, soldier mode where, you know, you kind of do disconnect from the, all the emotion and just really, you know, operate, from a different place. And it's in the time, like I call it and I thought I talked about this on the podcast quite a bit. It's the D. Thawing, or is it the thawing? I think that's the right language. It's the thawing out process, like coming down from that, like kind of encapsulation of the emotions that I struggle the most. And I think it's because there's like this disconnection from myself and everybody around me. And that, for me, is probably my most hated feeling is being disconnected. So I think that there's maybe a necessary flow, like as like, I think it's a normal process and a gift that I can kind of go into survival mode. I think we all have the ability to do that. Like that is a God given gift that our bodies know how to protect itself from the things that it just is too much to handle. But that like process of moving away from that is the time that is for me is the most difficult. And I think it's that disconnection for me that really stands out in this grief process in the process of them being coming reconnected. So I don't know what stands out to y'all, but I'd love to hear.

Alyssa: 24:11

So I think the, what resonated was Like you said, the survival mode and like the grief at a distance. So I feel like I'll go into like survival mode and then I can like Hang there for so long or I mask it with other things and busy with other things and then I'll like be alone And no one's around me and then that's where I let my feelings out So whether it's usually it's in the car like when I'm driving home and I'm alone and I have maybe a little bit of time To myself or like a shower or something But I feel like I didn't like that grief at a distance it's definitely like it's just kind of hanging out there like kind of pushed over there for a while until like Okay You got to like, kind of deal with it, I guess, or feel it, I think. Feel it. Yeah. Yeah. So, yeah, and I think like that title of surge of, how it said, the title of surge of sorrow. So I think, yeah, like it just kind of like builds up, then it's like, you just kind of got to let it, you know, feel it and like realize that, you know, like validate the feelings that you're feeling and then, you know, kind of just process them and not that you're going to do fix the problem by any means, but just to kind of get the feelings out that you're feeling.

Kara: 25:18

Yeah, it reminds me that that term title surge of sorrow if I think back to the episode I did specifically on grief talked about that grief is not getting over or getting through it's like letting in and So if I think about this tidal wave of sorrow, it's letting in this like expansive even like, I think about a literal tidal wave, how like intimidating it is and how shifting it is and letting that in versus kind of like trying to outrun it. And I don't know, I just, to me, the visualization is, is, is valuable and feeling like we're drowning sometimes.

Annika: 26:00

Yeah. I think what's coming up on for me is, Because I hear that term, we may have even spoken about this, but resilience, you know, we're supposed to be resilient, we can power through that cold detached, it does serve a purpose, but. I've recently been looking back at photos during different times of, like, hardship and it's almost like I didn't recognize myself. Like, I just, you can tell that you're not totally present. And I think you look back of wow, realizing the impact that probably had to everybody around. You know, like, whether it be Ella, my husband. it's what, I felt like I had to do at that time, but looking at it from the framework of more like, okay, adaptability, like I want to just get back to myself, but I can't expand or, or, shapeshift into this person that needs to be there in that moment. But I want to just be able to shapeshift back where I, see myself in some of those photos and I'm like, I went through months. It's just in that soldier mode and that's time lost. And not to say that you have a choice in it or that, like you said, it's not, it is serving a purpose, but, yeah, like I, I just, it's a horrible feeling. It's horrible place to sit and it does feel like you're drowning. But, people around you in those moments are wanting you to be resilient, wanting you to be, like, power through, and the stronger you are that you project to other people, the better they see you coping. But the reality behind the wall is, I'm not coping that well.

Kara: 27:37

huh. Yeah. So I think you're saying it's actually pretty easy to put on the face of resilience and the face of survival. And you look back and you can tell and even maybe even like, remember, and I've had this experience too. I have actually, it's on my, my desktop screen. It's like this picture of me and Levi and. I was so young, man. so youthful. those wr those weren't there. Right? I know, man. Fine. and I can see it in my face that I have a smile on my face. But I also know looking back is like I was like a shell of a person. I had no idea how to do any of the things that I've learned over the last, what are we at like 13, 14 years and. It's really interesting to look back and I think you make such a good point is that like, it's almost like we are in some ways in deep freeze. And so like our lives keep going and we're but we're partially actually like not there. We've encapsulated this part of us and I think that is something to grieve to be like we've lost do like look back at my in third son's first year. Yeah. And quick backstory is that, so I was, 10 weeks pregnant with my third son at the time of Levi's diagnosis. And so that, whole first year of his life, like we were in survival mode and wasn't a great time to bring, I mean, I'm so glad that he came into my life right then I needed that brightness and, and light and I don't remember most of his first year and I don't like to necessarily advertise that to him, but it's something to grieve like I'm not going to get those memories back and maybe things will come back when I look at pictures, but, yeah, really good points. You would say something, Alyssa?

Alyssa: 29:20

Yeah. How? Well, I have two things. One, I totally feel that like I forgot to do the tooth fairy this week. So my daughter was like, I was at work. My husband had to deal with it, but like. She was so upset. And then so we had to make up this story, you know, like about how the tooth fairy was busy and then they came the next night. But it was like, Oh my gosh, how you, you know, I felt bad because I felt like I let her down too, you know, but also Anika, like, how do you feel like you dig yourself out of that? Like that space? I, you

Annika: 29:53

know, so now it's not easy.

Alyssa: 29:56

I feel like it takes a really long time. It

Annika: 29:58

takes a lot. And I think sometimes, depending on the situation or so this is just my personal. experience with it. And I think, in the heat of some moments, you just have to be present. You don't have the resiliency at that point to do much more than just survive. And then there will be this sort of shift where you can start to, take moments to process. So for me, I have to cry. I have to really get in there and grieve. Because I carry it a lot inside. and how do I do that? I'm processing more through therapy. That's been a real help for me. Cause I could, I mean, I probably blubber through it with tears a lot, but it feels good to just have that release. And then physically moving helps. Meditation helps. Finding safe spots. So like visualization for me works a lot. So if I'm in the heat of a moment, so an example, my daughter had a medical emergency on her one vacation, we got to Hawaii, we were metaflighted to another island and, whole thing with that, but sort of focusing on moments of visualization of. calm, peace, just getting my headspace so I don't just get into like that drowning because I know how low I can go and Yes, you need to let yourself feel it you need to let yourself get to Experience it but there also is a component to it where you don't want to let yourself get to that drowning point where you're and I don't know if it's not that you're unable but You It takes a lot more to get out of the hole, if that makes

Kara: 31:44

Yeah. I think what I would say is it's so far out of reach from where you're at. And yeah, I would actually, I would say therapy has been a huge tool for me even in this last year. It's interesting because, you know, like I've mentioned, like we've been doing this for around 13, 14 years. And even just this year, I have been able to grieve things that I wasn't even present to. So, yeah. Like before. And so, I think there are these onion layers and what I want to put in also is that, it's a skill to do all these things. And like you said, you've learned to use tools like meditation, but there's many different. modalities that help us process these things and it's a skill that we can get better and better at. So, cause I think, I don't remember who said, but like it, it doesn't have to take a lot of time. It can take a lot of time, but it doesn't have to. and so I just, I wanted to kind of put that in there because I think that could kind of add into like, it's intimidating or hard or we'll never get there. And that's not necessarily true. So, I'm going to move into reading next quote, from the same book, but this is actually kind of about a different book, which is kind of funny, but it kind of speaks to what we're, talking about. So I want to, put it in now, particularly, I want you guys to listen through, like recognizing that. And Andy, you mentioned this, is that having a safe place. To do this work is so important. And so that's where I think, I want to read this quote. Okay. In bouncing back, psychotherapist and neuroscience expert Linda Graham reveals how bonding and belonging nourish resilience. She relates to how our sense of connection affects our ability to regulate our internal states during crisis and stress. She writes, The process of being seen, understood and accepted by an attuned, empathetic other, engenders a sense of genuine self acceptance, a feeling that we are profoundly okay. Well, first, I just want to kind of, you know, hear what stands out to you, if anything, in what I just read.

Alyssa: 33:52

I can go first. so actually where I am right now is like one of my spaces. So in my basement, I've kind of created like a little office desk area. so I try and get up in the morning, ideally before my kids, I'm kind of off a routine the last couple of weeks because I was on vacation and. I feel like whenever I go on vacation, then I get off my like routine so I feel like I'm a better mom if I get up before my kids, which is sometimes hard to do. But, sometimes, and I don't do this every day, but sometimes it's like mixed, you know, here and there, but I feel like things that I have in this space would be like, I have like a gratitude journal that I try to do, even if I'm at work, like I'll sit in my car and do it before I Like go into work. I also do like a devotional, like a really small, like a mom, like busy mom devotional that's I can always like relate to. It's funny how it like I really needed this today. Like somehow it hits the topics right every time I feel like, so that I also like will get up and I'll work out in this space. sometimes I have like a kind of like a vision board created. With different quotes from different people. some of them like special needs mom, like groups or, I went to a retreat and I got like different pins. And so I have a pin up here that says like, I am enough. I have some drawings from my kids. I have, I don't know if you guys have ever seen this, but Amanda Owen has this gratitude journal. Oh

Kara: 35:18

yeah, I contributed to it actually. Yeah.

Alyssa: 35:20

And I love it. So it's like different special needs, you know, moms. and so I think that's really unique, and I mean, I've had this for a long time, and I usually end up taking it, like, when I have some respite time, I'll, like, take it out, like, when I do coffee, and I'll do a page, it's not like I sit and do that, like, multiple times a week, but that's one thing that I have, sometimes I'll, like, I have a friend that has created a bunch of, like, meditations, I also have, this is gonna sound funny, but I made a vision board, and I never get it done in January, right? Because January is so busy after the holidays, but I do feel like it's fun and it helps me like be more creative and just get in touch with myself, even if there's like special needs mom stuff on the vision board, but it's in my laundry room. I have it in my laundry room, so I see it all the time. So it's just fun to, you know, see and then I have like just different books and pictures and things like that, but it's kind of like my space to. You know, just have my own space. That's not like, I mean, the kids are down here, but it's something for me.

Kara: 36:22

That's awesome. I love that you've kind of cultivated over, you know, you've kind of added to it and created this thing for you. Awesome.

Shantay: 36:32

I have to say Kara, I'm being very serious here, but like, My safe space and like where I really felt like a sense of belonging was really through our weekly groups. I've talked about it before, like, I don't know a lot of moms in real life who can truly relate. And, you know, I have great friends and I'll, you know, I'll talk about things that I'm going through, but like someone mentioned earlier, like you don't quite understand, right, unless you are in a similar situation. So, your group is my safe space. Like, you know, it's just the feeling of I can come in with, you said a phrase earlier, which I really like, the whispers of grief, right? Like nothing momentous needed to have happened in the, in the past week, but I can come in with this little, you know, something happened at the store and this is how I feel. And then there is also the, What is it? The title we've, it's, it's nice that there is a space where I can process both. So you know, the quote about needing that like sense of belonging, like absolutely. And yeah, I thought I found it in your group.

Kara: 37:39

I'm so happy to hear that. I think it's like the gift, you know, of all the hell that, you know, I've had to watch Levi experience and, you know, therefore also. I have experienced a lot is that I, I get to be in a space like this and have a role like this. So, and what's interesting is

Shantay: 37:56

that like every mom, like our cases are not cases, sorry, like our kids, it's completely different, right? Like, no, we don't have one where with the exact same diagnosis, but you relate, Anytime someone says something. It's like I can relate to that. I think I understand what you're feeling. so I, I think that's been really interesting and like surprising to see too.

Kara: 38:19

And I think that's what gives the experience of being seen right is when you know that, well, because I think Contextually, like, we'll talk about the group is that everybody is there because they have a common life circumstance of having a child that has any type of disability, special needs, medical complexity, whatever, and, that sets the stage to, know that when you share something, you believe that they're going to deeply understand you, therefore, you have this deep experience of being seen like you don't have anywhere else. And I'm saying you, but like, we don't have anywhere else. And that's, I think, where, you know, I read this quote, because I feel like, it describes the genuine self acceptance and like safe enough strong enough a feeling that we're profoundly Okay, and I think it's pretty profound. I love that word that we can have these Situations in life where we do not know the futures of our children. We do not know If they'll walk or talk and all the things and yet to still recognize that we can still have the sense of being profoundly okay. And really recognizing that we're not profoundly okay because everything's going great with our kids. We're profoundly okay because that's who we are. Like that's our state of being and our identity. And to me. That shift and kind of recognizing and doing the work to kind of get to the place where we feel safe enough, strong enough and so profoundly okay, that is essentially the pathway to peace. Not to spoil it for anybody, but like that is where we will get peace. And you know, for many of us, there's a spiritual component of that, of like the biggerness of life that it doesn't, it's not just the here and now it's, it's beyond that. And so, and I think that also is like really reckoning. with how we can have peace when, when things are not okay. So any other thoughts that are coming up from what I've shared, or of course the passage I read?

Annika: 40:30

Well, I think I will second, what was said about, you know, as, you know, where I am in our journey, it's the importance of community, and a community that will go deep with you. So like, we're talking about grief here, it is, I understand how this group and with Kara, we, we have this connection that is, is just, you don't find it. Really out there on the grand scheme of things and you're trying to seek it. But you know, trauma dumping on your friends just doesn't work, you know, like people Trauma dumping, I've never heard that Right?

Kara: 41:09

But wait, no, I want to tell you story. Yeah. Too much. Too much. Too

Annika: 41:13

much. And honestly, that's my life is seriously, there's so many of those scenarios that I want to share with. That's my life. Like I spent all my life in that this world of medical and insurance and you name it. That's doctor's appointments. And so to have people in a community that, and it's interesting, cause I do feel such a strong bond with these people, even though I may never see you in person, it's just that we can go deep and we understand what we're dealing with every day. But I also have been in a spot in my life before all of this, where. I've had, communities that just didn't quite work, if that makes any sense. So it's finding your tribe is such an important part of this whole journey. And once you found it, it's, a profound gift. but it's not always easy either. I mean, I'm, I'm thankful we have things like this in podcast. You know, we have some things that we didn't have before 10 years ago, even really that I knew of. I just remember, you know, like trying to seek this stuff out and it was like, you would go to a meeting the disease, but it wasn't this kind of thing.

Alyssa: 42:31

You know, like obviously social media, you know, you can go both ways, but I feel so grateful to be parenting in the generation that we are right now and have access to this because if I didn't have podcasts or groups like this, like I would feel so much more isolated. Like I think about the women that, you know, we're kind of like the pioneers, like 30 years ago, 30, 40 years ago and like all the things that they have accomplished and it's been like. I don't know. I also think it's really interesting to see, like, where are we going to be in another 30, 40 years? Like, our generation, where are we going to be compared to, like, the women before us? But I seriously don't know. Like, I'm in, like, an inter Because our diagnosis is so rare, we have an international support group, and that is, like, a lifesaver because, obviously, Parents, you know, you know more things. If you go to a doctor and they've never heard this before, like, dealing with kind of what we are this week, it was, I just hopped on there, like, asked some questions, like, hey, how far did you guys have to go? And I got multiple responses. And that also helps, I think, like, build, like, this is going on in this rare community, or these are things that they've dealt with in the past, like, I think we should do an x ray or, you know, I think that would be beneficial versus, you know, whatever. But I can't imagine not having, like, that easy connectability. Yeah. You know, I'm not saying it's easy either. You have to search, and if you don't search, you don't find it. You know, like, if, like, if I didn't have Facebook, I would be disconnected from a lot of stuff. So I think that's, you know. Yeah.

Speaker 5: 44:06

We're

Alyssa: 44:06

really fortunate to have that.

Kara: 44:12

No, I certainly, again, like you said, there's the, there's both sides of all the social media stuff, but I've recently even leaned into, some sampling of brain tumor support groups, just the stage that we're at in life. I'm like, you know what? Like I've never leaned into this particular, aspect and I'm going to give it a go. And I think, you know, Annika, I think what you were saying is like, not all the groups feel what you're looking for. Like in my own experience recently, some of them were a total mess. I'm like, it just didn't, it wasn't what I needed, what I wanted. And and I think we're actually, one of the things that led me down the path. of creating this space that I did is that, like, I'll speak to, you know, we have an amazing group, it's called craniofringioma, it's the brain tumor group. It is an amazing group and 99. 9 of the conversation is treatment focused and there's so much value there like to be able to ask the questions of, you know, these people that have been through something so similar, but as the caregiver, as the mom. It doesn't give me what I need to be the caregiver to manage it. And so that's where I think it's unique to find a space where like, actually it speaks to like the, who you are versus what we do as caregiving moms. So. Okay. Well, I want to honor the time commitment and start to wrap us up. And so I will invite, any last thoughts, just kind of as we close out, anything on your mind that you want to share as we close this out?

Alyssa: 45:46

I don't have anything, but thanks for inviting us.

Kara: 45:50

Thanks for coming. Thanks for coming to my party guys. Actually, excuse me. Thanks for coming to the huddle. It's not a party and our

Annika: 45:57

mantra. We got

Kara: 45:58

to think, I know I was just going to say that this is the time where we all put our arms in our hands and then we like do our cheer. And so, I'm trying to think I'm like, we're going to come up with a way of like soliciting. yeah, what's it like people throwing in ideas. So this is your call forth, everyone listening that we need a mantra or a cheer. Maybe chat GDP would help us, but it has to be short as my

Shantay: 46:20

first, like, yeah,

Kara: 46:22

right. It has to be short. I'm not great with memorization as in like, I'm really bad at it. So it's going to have to be short. Ooh, the one I actually, the one I, I pasted on a t shirt, when we were doing fundraising for Levi for his treatment a couple of years ago is together is the only way. And

Annika: 46:40

that quote

Kara: 46:40

came to me because it literally was so I reached out to this guy. I barely knew. Well, I mean, kind of knew him and he had DJ'd an event that I had gone fundraising event and I was like, all right, Chris, like, Hey, would you consider like DJing and putting music at this event that I'm doing for my son? Like a, basically a, a, you're going to go into surgery again, party. And, and he's like, of course, and in the, at the bottom of the email, in all caps, he wrote together is the only way. And just like his fierce, like, of course, was that I needed because it was hard to ask. It was like, I mean, I was, it was not a great season, right. And to have people show up. That makes all the difference. So, you know, okay, that's going to be our fill in and let's we find something better. So together is the only way. All right, everyone hands in. We're going to do it, guys. We're going to do it. And on three, one, two, three, together is the only

Alyssa: 47:42

way. Okay.

Kara: 47:43

We'll work on that. You guys will work on that. Okay. All right. With that, we'll see y'all on the next episode. Thanks guys.