The Special Needs Mom Podcast
The Special Needs Mom Podcast
Candid Conversations & Summer Reflections of Special Needs Moms (A Community Huddle Episode)
In this candid episode, I sit around a virtual table and catch up with a group of incredible moms from our community. They share their personal stories, discuss the challenges they faced this summer, and offer each other (and you) support and encouragement. This episode is all about being known, seen, and supported in the journey of raising children with special needs.
Fun Fact:Three of our four guests (Lora, Rachel & Andie) are all contributing authors to the anthology I am also an author in, Becoming Brave Together.
Connect With Our Community Huddle Guests:
Lora DeMello @colormesmiling18
Elisa Hill @elisalhill
Rachel Alves @alvesmomkickingcask
Andie Torres @we.are.takingcare
Connect With We Are Brave Together:
- Join the Community: Connect with the "We Are Brave Together" group on Facebook, where moms can find a safe supportive space to share their experiences without judgment.
- Participate in the 5K: Sign up for the annual 5K event, whether locally or virtually, to support the cause and help reach the goal of 300 participants.
- Read the Anthology: Explore the "We Are Brave Together" anthology, a collection of stories that offer hope and solidarity to moms in the special needs community.
- Dive into Self Care: Does self care ever seem either superficial or way too much work? That's why this free resource was created. It's a list of 72 "bite size" ideas for you to make your self care practical, meaningful and attainable
- Binge the work of WABT
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. --------> Apply Here or Contact Me
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.
Kara:Welcome to the special needs mom podcast. I feel a little rusty. I haven't recorded an episode like this in a little bit. And so thank you for joining us. This is a community huddle type episode, which is essentially a group of moms getting together, linking arms saying we're in this together and chatting, talking about it, talking about the real things. I think, what we can walk away with conversations like this is feeling known and feeling seen, which I know for so many of us in this walk is something that is lacking. So as a listener, I invite you to feel like you are part of the group today, answer your questions along with us, make your own reflections and consider that we have like an empty seat at the table. Representing you and who you are today. So let me first start by introducing our guests today, and I'll have each one introduce themselves. I'm going to call on you just to kind of have it flow a little bit. And I'm actually going to start by introducing myself. Oftentimes, you know, I realized that people listen to the podcast and I don't, I don't always share all about my family, right? So unless someone does a little digging, they don't know. And so I'm a mother of four and my second oldest son, Levi, Is a survivor of multiple brain tumors and, you know, multiple disabilities as a result of those brain tumors. So we have been in the cancer corner a couple times and we're in all different aspects of different disabilities. And I like to make a terrible joke that we have a cornucopia. An abundance of disabilities and interestingly enough, when I started this podcast, I'm just like, Oh my gosh, how crazy that I can relate to so many different aspects of disability because of this quote, you know, cornucopia. So that's a little bit about our lives. We live in San Diego, California. I've been married for 20 And a half years now to my husband, Dan, and he is a school administrator. He's an assistant principal at a high school. So I get to hear a lot about high school drama. So if anyone wants to talk about that, we got that. It makes me very thankful, that I have my kids at the school that they are at. Okay. So let's get into, other introductions. Rachel, you want to get us started off? Okay.
Rachel:Sure. hello everyone. I am Rachel. I live in Northern California, close to Sacramento. I live there with my husband and our one and only child, Audrey. She is nine and a half. she has a very rare genetic disorder, which causes a global delay. a lot of different diagnoses go with that, In conjunction with the genetic mutation, microcephaly is one of them. Also, she has absent seizures as a part of that, with low muscle tone as well. So all areas of her development, are always a challenge. What else? I have known Kara for quite a while now, and I'm so thankful to be a part of this, and love everything about the community that she has. I've been married for 12 years, going on 13, to my husband, and we just Which we'll be talking about in the, in the episode today, we just finished our summer break. We definitely survived and did not thrive. Very happy to be here. I used to be a teacher in a former life, or it feels like that, before Audrey have a lot of different backgrounds in child development of kind of taught all ages and all spectrums of education. Miss it very much, but feel that is very applicable to my current life. And I'm very involved in, our disability and special needs mom community in a lot of different ways. So that's me.
Kara:Awesome. And actually what I forgot to mention as I opened us up is that a handful of us here actually are contributing authors to the We Are Brave Together anthology, which is called Becoming Brave Together. So if you haven't heard of this book, it's a definite must, and I will have the link to purchase it. And, you know, it's a book Of moms like us and our stories and it's the real, it's the raw, but it's also the really hopeful. And I think, you know, a lot of people are like, why would I read a book about a bunch of really hard to read stories about life's like mine? Well, you would do it because when we connect to others in story and we don't feel as alone and also you do leave with hope. I mean, my experience and I think the overwhelming experience, those reading it is that there's a lot of hope even when it's really, really hard. Yeah. So go ahead and mention if you are, Rachel is an author, contributing author. Okay Laura, why don't you jump in for us?
Laura:Good morning. so I'm Laura DeMello and, I hail from the whole West Coast, Oregon, Washington, California. I am a mother of four, blended family. I've been married to my second husband for, about two years now. and, three of my four kids have what we call, invisible special needs. I am a, blessed to be an author also in in this wonderful anthology of ours. Also this little side note, one of the nice parts about the anthology is it's not like a book where you have to like read it from start to finish because you're worried like you're gonna, you know, get lost or whatever. You can just pick and choose and check them off as you read them. So it's not like you have to read it in order. You can kind of, you know, look at the table of contents and like that looks interesting today and read it. And it's They're not very long. So it really lends itself to, to being read by people who have no time to read.
Kara:So, Almost like the people that designed it knew about the actual life.
Laura:I wonder. That's a
Speaker 4:great
Laura:point. so my children, my daughter, I have a 20 year old, 18 year old, 14 year old, and 12 going on 40. And my 20 year old daughter, she has four visible conditions. one is ADHD, generalized anxiety disorder, OCD, and something called cyclothymia, which is also known as bipolar three. and all of them, have overlapping similar symptoms. so she's kind of, it's like she has anxiety and focus issues and mood. Stabilizing issues like times four. but she is thriving. She's actually living her best life right now. So I'm really excited about that. and my son, Simon just graduated high school. He's heading off to college. my stepson, my older stepson, he is high functioning autism spectrum disorder. ADHD, depression, and anxiety. And then my younger stepson has ADHD, a rare blood disorder, and something called PDA, which many people haven't heard of, it has two different definitions, which I say are every teenager in existence, it's persistent demand avoidance, and, persistent drive for autonomy. So every teenager everywhere, but it shows up in very, special and, challenging ways. And then my husband actually also, is late diagnosis at age 52 of ADHD. I have, a 32 year education background. And so when I met him, I was like, Oh, and he is absolutely wonderful, but had never been diagnosed. And so when you grow up and you have never been diagnosed with something, it brings its own challenges. So we are, as my therapist says, we are six very strong neurodivergent personalities in one family. so I'm a working mom and I'm also president of. We are Brave together board. Jessica and I, are two of our kids met in first grade and I've known her forever in a day and she's my work wife. and she is one of my best friends. So I'm very blessed and grateful to be a part of this amazing community. And one more little plug I will put in there is that registration just opened for our, it's our fifth annual five K. but for anybody who is in Palos area locally. we are having our first ever family event. So we're going to have a DJ and vendors and food and face painting and all of that good stuff. So, the link I think you said would be in the bio and it's our biggest fundraiser of the year. All the money goes back to all of us moms. it goes for our, heavily subsidized retreats that we put on for our moms. So, every dollar goes to goes directly there. So we hope that you'll sign up wherever you are. You can participate virtually anywhere in the world. We're super excited about, really getting our, our goal is, 300 people participating or more. So it'd be awesome.
Kara:Yay. Well, we will help meet that goal. So what I want to add about we are brave is that Laura mentioned it, but I want to emphasize the opportunity for these very low cost retreats. So if you think about going away for a weekend, being fed, being housed, being loved on for the price that they, I think they're 300 now. Is that, is that correct? 300.
Laura:yeah. Or, or scholarship covers the entire cost.
Kara:And they have scholarships available, right? So there's the financial aspect is like a moot point. Now we all, we acknowledge that it's hard to get away, but, please, please, please go connect with the organization because they are a Mecca of support and, you know, just another Avenue that we can support ourselves. So, and we have,
Laura:yeah, and we have a private Facebook group too, which I think next to the retreats is honestly one of our. best resources. It's just a place for just us moms to be able to go on there and say, life really sucked today. And everybody just loves on you. And you can also go on and say, I had this win today and everybody loves on you. And it's just no judgment. I mean, I don't think I've ever, if Rachel or Andrea, like anybody else, but like, I don't think I've ever felt any judgment come from anything I've posted. it's just, it's really a beautiful, safe space.
Kara:I would say I have a mixed relationship with many Facebook groups. This is the one that I'm like, okay, we're solid. We're solid. It's a great group. So I definitely, agree with you on all of that. Okay. Why don't you go, go ahead and go Elisa.
Elisa:Hi, my name's Elisa Hill. I live in Nashville, Tennessee with my husband Brad and our lovely daughter Eden, who just turned seven a couple of weeks ago. Eden was born with two different congenital heart defects. And after her fourth open heart surgery in the first six or so months of her life, we also discovered that Because of her heart defects and the airway Malaysia, she had that. She'd also had developed pulmonary hypertension. And so at 8 months old, she got a, a tracheostomy and was on a ventilator 24 7. I called the trach and vent my, That it's a blessing and a curse. The obvious blessing is that we were able to get her home from the hospital, permanently at about her 10 month mark. And, the curse is everything that goes along with it. So. Things like private duty nursing, dealing with all the DMEs, the safety issues that come around just having a compromised airway and needing all that ventilator support, insurance, you know, all, all of those things. So, but she has come really far and she started first grade last week. So we've also made it through the summer. nice to have that structure, but also sad that. Summer's over. let's see. been reading through the Becoming Brave Together and one of my big takeaways that seemed kind of like a recurring theme, at least for me, was about sharing your story and that will help you also to find your people. And so I feel really honored that I'm here today, not only to share my story with you all, but as part of my own healing process. So thank you, Kara.
Kara:Yeah, so glad you're here. Okay, Andie, why don't you hop in and introduce yourself?
Andie:Yes. Hi. I am Andie. I Live in Northern, California actually very close to Rachel And I am a single mama of four. Let's see My kiddo with a disability is my youngest. His name is Benjamin. He's six. He just started first grade two. and he has an ultra rare genetic disorder called Nicoletti's Barrister syndrome, which is like less than 300 people in the world to have it. and it presents with, global developmental delay. he has a feeding tube. He has kidney issues. He's nonverbal. sensory issues. There's a long list of things, but, he's the sweetest little thing and makes everybody smile. so let's see. What else? Oh, I'm also an author of in the anthology, super grateful to be a part of that and it's fun when I jumped on here. I was like, Oh, these are all my people. And nice to meet you, Lisa. yeah. Oh, I also work for Kara. So I am the content creator and I'm trying to think of my official title for the podcast. It was
Kara:a really long title. I remember making it up. It was like 25 words because we're small, like you do a lot of things, right? So, community engagement, content creator, helping me with all the logistics. I think assistant producer for the Alex is already, I was like, well, we have to, we can't have two producers, so we have to have some order. So, it's great. We make it up as we go, but it's actually a fun fact. What's neat is that Andie and I started working together and then we found out we were actually going to be co authors in this anthology. So that was kind of crazy how our worlds came together even more so after that. Yeah. Yeah. Right. Okay, good. Anything else you're going to add to your introduction? You're good. Okay. I'm happy to be here. Now, it's a simple question we're going to move into next, but, my invitation is to not have it be a simple answer. I think, you know, our culture, is very good at just being like, okay, we're all good all the time. And that's not always true. So really the, the next kind of phase of this conversation is really just a check in, like, how are you doing? And I think sometimes it takes a second to even give an answer sometimes when that we don't default to like, I'm good. Thanks for asking. How are you? And so, you know, take a minute to kind of contemplate, like, how are you? And as we record this, episode I am actually not yet, done with the summer season. we start school on Wednesday. So at the time that this recording comes out, we will, it will be our first day back to school. And I think most of you are back in school. not, not Laura. Okay. Two weeks. Two weeks. Oh, okay. Yeah. Well, you, well then you can answer this question, through that lens and, I'll start, I'll start us by really kind of answering the question of how am I doing? And the answer is it's multifaceted and I would say the word that comes to my mind the most is depleted. That I have been putting it all, like I'm picturing this the boxing ring, right? Where you're just like sweating and fighting and like hurting and all the things. And sometimes you're like, okay, I'm cool. Like I'm, you know, getting a little jab here and there again. I don't know why I'm using a boxing analogy. I actually kind of hate boxing, but, and then sometimes you're like getting pummeled. But yet you're still fighting and you're sweating and like you fall on the floor and you get back up again. So I feel like that has been the experience of my summer. That there's been a lot of falling and getting back up again. And, I'm kind of at the point where I'm like, Oh my gosh, it's not that I'm like, I don't know if I can get up again is I don't want to have to get up again. I don't want to have to keep falling. And so I do feel hope with this. Like, I think it's different to be in a space like this where you don't have kind of an end point. So for me, because so much of the difficulty is related to what I'll share. All right. Also next or in at some point later in the conversation because I kind of have an end because Levi's going to be going back to school. Therefore, I will have instantaneous support that I don't have now that I feel like, okay, like I am depleted and also I know I have the confidence I'm going to get the chance to restore. And I want to acknowledge that, like, there's some parts of our lives that we don't have that, like, end point, right? It's an ongoing thing. So, like, you might think of a particular medical aspect or even behavioral aspect that's, like, not ending. And so I think, I feel very thankful that I have, this balance of the hope of, like, okay, it is going to be okay. And it's been really, really hard. So that's one aspect. I think another aspect is like, it's been really a grief filled summer and like, it's really hard watching your son struggle really hard watching kids their age live the life that you would want for them. And there's this one particular mom who I adore, like she is just a wonderful mom and beautiful person. She happens to have three boys. all typical. And so I see her loving summer and like pictures of her teenagers at the beach. And it really crushes me every time I see it. I'm like, dang it. Like, dang it. Like, that is what I want for Levi. Meanwhile, he's at home with me. And as he's gotten older, I share less and less of actually his story. cause it's kind of like, I want to honor the fact that like, it's like not really my story to tell, but sharing my experience with it. And so I will leave kind of the specifics of exactly what's going on with him out. But I think for me, it's really acknowledging like that it has been really, really hard and grief filled for me. and. Yeah. I think there is that I think if it wasn't for the aspect that I anticipate things getting better, I think it would be much, much harder. And so I am hanging on, I am hanging on to the hope and also very thankful I have that. So I'm a little also disappointed that, I mean, I really had strong intentions of like being really ahead in the podcast and like having like a backlog of Andie's laughing right now, having like, you know, And actually, I'm looking over here in my office, I have like all the next three months episodes all like figured out, dialed in, and I'm not ahead. I am like still on a thread here, I'm like, doggone it, like I really wanted to be not kind of just in that hanging on place. So that's how I am. And I will let you guys volunteer who will go next, I won't call on you. And so who will share next? Rachel, go ahead.
Rachel:I felt every word of that grief. This was probably our hardest summer yet. And every year I've been so intentional about recognizing how summer, how break breaks in general are so hard. And every summer, it just. No matter what I try to put in place, no matter what my expectations are, I crumble, you know, like we barely, we survive, like I said, and, and don't thrive. And this summer, I'd say the win, for me is that I finally found some help, which is huge and shout out to my lovely Emily. you were, I think Laura mentioned that Jessica is her work wife. We call her wifey now because she is amazing, in every way. And she actually is from my past. I used to work with her. we were both parents at that time and now she's gone on to be a teacher herself. she's a resource teacher. And she was a lovely human. She unfortunately came into our world at the end of summer. So we only got her for a couple of weeks. She's going to continue, but she obviously is, you know, working herself. so that is huge because it's taken me nine years to find someone that I can rely on that lives locally, that isn't family, that. has a background in this work, has the energy for it, she did not have kids of her own, and so she has that space, and that energy for it, and also someone I can just say, joke around with and, she gets like the, my darkest sense of humor of all the struggles. And, so that's huge. I also looked at another option potentially for next summer for Audrey, because what I realized was this is not, and, As much as, you know, you say like, you just, it is what it is. Like we get through it. It's awful. It's just horrible. we have nothing to do. she likes to be busy. I do as much as physically possible. Her mobility is continuing to not get any better, but her body is changing and she's bigger and she's heavier and she wants to do less. I don't know if she wants to, but I think it's harder for her to move like she used to because she is getting bigger. so the physical, part of that is really challenging for me now to take her out on my own. I'm loading and loading her chair in and She wants to be moving and independent. So it's really tricky. We're always in that little fine line of needing assistance or needing her to take breaks in a chair because she fatigues, but I can't just use that all the time, nor do I want her to, because I want her to be moving. So anyways, we had a lot of tricky situations with that. the weather obviously is another, Factor. Her body doesn't regulate temperature well, so we have to be careful of the heat. It is very hot where we live. And so, you know, by 10 AM, you kind of can't be outside much. So that's really tricky. And we had a lot of struggles every day. A lot of, depletion and defeat feeling that I can't give her what she needs. that's really hard. Also, the other option that I'm referring to that may or may not help, was really, really grief, filled with grief. it's a facility type of situation and you just never think that that is what you're going to need. So, I have a lot of work to do now that she's back in school because I like you all probably put everything off until that. So now I need to start taking care of myself again, researching those options to line up for next summer. But I think the biggest takeaway for me this year was that I don't want to feel this way. Like I don't want to be counting down the days until school starts back up and I don't want. I look for these options. and I'm sure every parent is at some point like, yes, go to school, please. But it's such a different feeling knowing that the only reason I'm feeling this way is because I can't give her what she needs. I can't have her go play. I can't have her go with the neighborhood kids. I can't have her go to sleepovers or, you know, Our family vacations look very different and full of accommodations. And, you know, it's just, it's a different world. So I'm feeling hopeful that school started, but I'm also feeling a lot of grief with that because one, This isn't always going to be an option. She's going to get to the point where we don't have school as that option. And two, what are we going to do when those breaks happen? Because it's not just summer break, it's winter break and it's sick season coming up. And although I'm so fortunate that she is usually pretty medically healthy, You know, we're not out of the clear with anything. So it was a tough summer and I had really have to refocus and figure out what to do next. So that's my check in long winded check in.
Kara:That'll kind of be that second thing you decided will kind of be the second part of the conversation. what I want to highlight is what you said that really, really resonated with me. And it's, I can't give her what she needs in this case. I can't give him what he needs because I think that's like where, you know, I described that. That boxer in the ring situation where it's like, I have been working so hard yet still not meeting his needs and I maybe do a medium, a good job of acknowledging that I'm still doing a great job and it's not humanly possible, but I think there is still the end of the day. Sometimes I should just be doing better. So that's still, I want to just kind of be transparent that that still exists for me, even though I can, Spot it. And it's easy to spot in others, right? But he actually was a friend of mine. He was like, Oh, I don't know. You might be actually holding more on yourself than you realize. but also just that the needs, perhaps are even, unmeetable. And that's hard to be with. Right, and kind of goes back to what I shared about how like so hard watching your child have unmet needs. And yeah, so thank you so much for sharing, Rachel. Okay. Who wants to share next? Andie, go ahead.
Andie:Yeah, I will. I feel like I'm very mixed how I'm feeling like those there's areas where I feel like I'm doing really great. Like I'm really dating and that's super fun and exciting. Right. Yeah. I know. New dating energy is always fun. and you know, like I just joined a gym a couple months ago. So like, feels really good, like taking care of my body and like all those types of things feel great. the first time I've been back in a, fitness type environment, like four years So it feels so good to finally be doing that for myself again. but then like, as both of you have been talking, I was like, I was thinking initially I was like, our summer was pretty chill and then you guys are talking and then I'm remembering how our summer was not chill. Maybe I disassociated. I'm not totally sure. But, yeah, the reason I think I was thinking that I was easier than normal is we have a way we had way less appointments than we typically do, which is nice and makes things easier that we're not like constantly going to appointments. But then, yeah, like Rachel was saying, it's so hot here. Ben doesn't sweat. And so, we basically are, you know, stuck inside. And then, you know, he goes and stands at the front door and wants to be outside. And I'm like, I'm so sorry. I just feel so bad. You know, I can't do that, anything about that. But. I went on my first, like, big vacation with my kids this year, this summer, and I took them to North Carolina to visit my sister, and, I've done like small trips with them or day trips or weekend trips or whatever, but there was something about this environment that just magnified how different my life is from typical families and we stayed with my sister, which I think was part of it too, right? Like, I'm just sitting doing life with all of these people who don't normally see this much of my life. And it was very like,, I don't know if I know the word it was, I felt very vulnerable and exposed and, pitied a little bit, which is a hard one. and then it was hot and so, you know, we've like, planned all these fun outdoor things and then Ben ended up getting overheated and having seizures so our whole trip was kind of turned on its head because of his medical needs. And so that was really hard because then I'm feeling bad that I'm messing up everybody's plans and, you know, all these things. And so, ultimately, I feel like I learned a lot from it, but it was pretty intense. and of course, it was fun. Like, I don't want to say it wasn't fun. I got to see my sister who I haven't seen in a while. So it was wonderful, but really challenging at the same time. And then I work from home exclusively from home. And so that has been another big challenge, like Kara was saying, like we had all these big plans for all these things we wanted to accomplish for the podcast. Yeah, we were
Kara:going to be so amazing.
Andie:And it just did not turn out that way. And it was that feeling of constantly being behind is I hate that so bad and I feel like that in my life. It was just like constantly just running to try and catch up to all the things that I need to be doing that I'm just not doing. so. Yeah, there's definitely like that. I'm so grateful. My kids are back in school that I'm sorry, kids. I'm grateful that you're back in school, but that structure, is really great. but yeah, but then at the same time, like, I'm in a really great season with all of my kids. My older kids are 14, 12 and 10 and, they're just all really fun ages. And so like, that's been fun just as they're becoming more. Grown up and it's a different playful environment. That's been fun. So it's very mixed. I've had a very mixed. How am I feeling? But I feel like that's life too.
Kara:Yeah. Yeah. Very much. So, yeah. thank you so much for sharing. Yeah. Right. Who will go next? Elisa.
Elisa:Hi. Yeah. I felt like summer was just a lot of ups and downs, nothing major, but the end of summer was a different story. It just, it was a lot more challenging. Sometimes I think when it rains, it pours, right? So, our pastor has this, example that he uses of a Ferris wheel and life's kind of like a Ferris wheel. Sometimes things are wonderful, but. They're not going to stay that way. Everyone, whether you're, you know, special needs parent, or, you know, have typical children, you're still going to ride that Ferris wheel going up and down. and especially after burnout that I experienced last fall and going into this year, I just, I realized like something Really has to change. I just can't keep riding these Ferris wheels that are going so far down. I feel like I'm taking an elevator down and sometimes it's so fast. so this year I've been really focusing on self care. And I always thought of self care as these typical things like go get a massage or go exercise or whatever. And yes, those things are great. but I've needed more than that, right? So, I've been focusing a lot on the self care and the respect of my own mental health. And. Once I was able to, open myself up for other possibilities of self care, I realized that there's just an abundance of opportunities out there to facilitate this healing, things I just never even knew about, things that can help with my grief and isolation, the feelings of overwhelm that I feel I was Almost every day and instead focus on the impact that my emotions have on my energy level. So I've discovered some really cool things like obviously there's meditation that I think a lot of people know about, but tapping. I've been doing these emergence processes about, getting that all those emotions out of your body. Right, and how your body holds in your central nervous system is going to hold on to these things, and they just have to be released before you can go through that healing process. trauma therapy, ketamine assisted therapy. And of course, one of my favorites Kara's group pathway to peace. and so yesterday I was really proud of myself. I was able to take a situation that I previously would have been incredibly reactive to and instead able to deescalate it and, not surprisingly, had better results once the time came to have this challenging conversation that I needed to have. And granted, in my mind beforehand, I was just, it was all over the place, right? But I could recognize that. Something I wasn't able to do before. Tell myself, okay, I'm not going to overreact. I'm recognizing this in myself and I'm not going to also make any rash decisions. So I'm still learning and it's definitely not an easy process. Not saying that I'm not going to be a little over overly reactive to something that might set me off later today. But I am proud of myself that I'm finally getting there and making some of some of my own progress. And I think this will also help me just be more engaged with Eden and all the wonderful people that I have in my life.
Kara:I'm so proud of you too. It's incredible how much we can change how much can shift in six months, right? Like that's pretty incredible. Laura, you want to go next?
Laura:so, I'm going to start by saying that, it's always such an honor to be a part of, any of these groups and just to listen to how amazing you all are. I mean, you really are. And I think sometimes we lose, we lose that, right? We lose track of how amazing we are as moms, cause we just do it, right? Cause there's not a choice. and we don't have. As many people in our lives telling you you're doing a phenomenal job, in what you're doing, even when you don't feel like you are. So I just want to acknowledge that. I also want to acknowledge, that, we have on our website. a document called bite sized self care. so, highly recommend, one of our other wonderful authors and moms, Billy Short, and I put it together. And it's 70 ideas of self care that takes no more than 15 minutes. It can take longer, but the idea is that we get overwhelmed thinking that self care has to be like you were saying, like, you know, a spa day, nothing wrong with that, but, that we can actually have a positive effect on our mental health and well being with 10 minutes a day. so, highly recommended. It's a great resource.
Kara:We will make sure to put the link to that on our show notes as well.
Laura:Yeah. And I can get that to you. I am in a position, so we have a phrase and we are brave together and it's share and don't compare. And, it is often very challenging for me because I know that my pain is my pain. However, I also know listening to, you know, to all of you that my life and, you know, And the paths that my children are walking on are so very different from the paths that all four of you ladies on here, many people out there, right, are walking because for all intent and purposes, God willing, my kids, will live more of a neurotypical life than yours just because of, they don't have the same medically complex needs. And, so I just want to recognize that, but also say, cause I know I'm not the only one out there, right? That my pain is my pain. and, so I coined a phrase apparently at the last retreat that I was running. and one of our moms, appreciated a lot. So she came back to me with it and this describes, my summer to a team when the shit hits the fan and the fan hits the shit. that's my summer. so, I think the shit hitting the fan is the fan is the expected, right? It's this, it's the stabilizing factor. and that stabilizing factor that's there and it's providing a, a resource and it's cooling down the heat that comes with life, right? and then of course the shit hits it and it's a mess. but the fan hitting the shit means that the stabilization gets upturned. so the fan gets thrown at the mess because we're just done. And, so today my check in is I'm doing well. I'm grateful to be here. I'm always uplifted by being around other moms who, who get it in varying degrees. and, you know, I'm feeling grateful for many aspects of my life. and also I too had, many goals, many of them for work. Thankfully, I am self employed, but still many of them for work and some for We Are Brave. I've got grants to write for work and I've got grants to write for We Are Brave to get monies for our moms, that are overdue. And they're overdue because I had dropped in my lap that, I had to be camp director, unexpectedly, for my stepsons and they're not easy to be camp director for. And so that meant I was on all day, which means I had to do my work at night, which is not as effective. And so it just creates a shit show. And, I had a really difficult time righting the fan. to create my own stabilization and to kind of pull back and be able to look at it with different eyes. And I'm still working on that. so yeah, but lots of things to be really grateful for. and then I'm on an emotional roller coaster because my, my son, my birth son, my biological son, Simon is going away to college on Tuesday.
Kara:Oh, man. Whoo. That gave me the chills. One of my closest friends is dropping her daughter off today.
Laura:So I'm grateful that he's close. he's only an hour away, but he is, he's a fan. So sorry. No.
Kara:Oh, it's welcome.
Laura:Obviously I've been ignoring this cause I haven't had time to process it being really busy
Speaker 4:and
Laura:and so he's the glue that holds our family together outside of me. he's just such a, such a joy for life and, I'm so grateful. So it's going to be a change.
Speaker 4:I'm
Laura:not sure. but, so yeah, so we have the emotional rollercoaster, you know, both my kids had their best birthdays ever, which was awesome and I feel really good about that and, in sending him off with that, but, so we have a lot of emotions, that are at play. And, a very huge learning curve being a stepmom is, is I call it a blurs, a blessing and a curse. it's a blurs, for sure. And, so that's where I'm at. You have
Kara:all your coin terms. Yes. Well, thank you so much for sharing. And I mean, I think you've highlighted something that I think is important to a couple of things to, to point out one that oftentimes it takes slowing down just a little bit, like we are in this conversation to get present to. Our emotions, right? So like you said that you've been going so busy, so strong and sometimes it's kind of convenient to be too busy to have to actually process your emotions. So a lot of us prefer busy over other feelings. So thanks for being a model of slowing down and allowing what is present for you to be present and giving it some space. you've talked a little bit about kind of you righting the fan, like, you know, kind of getting it back. So it's blowing the direction you want it to blow. What I want to just point out is I think that that's why what I want to highlight in this season. Right. So we are in a season of transition, whether your kids are going back to school or they're aged out of the, you know, of school or not, it's a change in season, right? We're going from, from summer to fall. And I, I just think that the. Energy, if I'll get like a little ethereal for a second is, I think this is a great season to re stabilize and to ask the question of like, okay, what needs to be different in this next season? And even I think for a lot of us looking ahead to next summer, like Rachel said, what will be different next summer? Because we can't do this again. That's been happening a lot for me. And so let's move into our next kind of conversation point. And I want you to look back at this last season, season kind of more specifically being summer, but it doesn't have to be limited to summer. You could say the whole year, but I want to know if you can identify perhaps an area that you recognize you have learned something, you have become aware of something that you weren't aware of before. And this could be in your life in general or of something of you personally. And I'll start us off again saying that. I would think it was generally aware of this before summer, but I think something that I learned is that we are grossly under supported. And Rachel kind of pointed to this as she shared and I connected to it so much is that because her daughter's at a point of growth and she's changing, right? She's at a point where you can't just pick her up like you would a little child. Levi has been past that stage for quite a while. He's he's a hefty boy. And there's no chance I will be picking him up the point is that his needs have grown faster than I could keep up with. Like these kids, dog on it, they keep changing and growing. In some cases it's great. In some cases they're not always growing in what we'll call like a positive or desired trajectory. Okay. And so for, Levi, because of some of the, the ways that he's progressing along, it's actually creating a bigger gap in need rather than kind of closing the gap, which would maybe what a typical child would be doing. where they're becoming less dependent, a typical child, and he's becoming more dependent in a lot of areas. And so he's been growing. Meanwhile, I haven't been able to keep up with fulfilling these needs. And so I think it's a combination of, we probably, you know, even last summer, we're under supported. he kept growing, the needs kept growing, and then we ended up here. And so the problem, and I want to point out this because I think a lot of people will find themselves here is like, okay, great. We've identified that this is the case. But what happens when you feel too busy or too overwhelmed to do anything about it? Or what happens when you feel like you don't have the resources to do anything about it? And I mean, there's not one single answer for that but I will say what my answer is for me in this season and that is I have been working very diligently over the last year and a half to create wells of support, through the, you know, different agencies that we've gotten access to so that we will have support and I will be asking other people in my life, some paid some, you know, friends to help me dream bigger for the support that Levi could have because I think it's very easy when we're so locked in. like we're so close to like what they say that you can't see the forest through the tree or whatever that saying is I probably screwed that up. Did I get it right? Is that right? You can't see the forest through the tree? Okay, that's, that happens. What is
Andie:it? You can't see the forest
Kara:through the trees. Okay, exactly. Thank you. You can't see. What you can see, and that's why I think having other people speak into possibility is really helpful. It helps you dream bigger because you don't stop where you normally stop, where it's like, you know, Lisa, you deal with nursing care and all of that. There is a lot of easy stops there, because you have hit them over and over and over again, and what you've done a phenomenal job of is, still dreaming bigger and pushing through to see the possibility in that space, even though you have great evidence to say it's not possible, you've been able to latch on to be like, well, what if it is possible? So I kind of got on a tangent here, but That's kind of what's been going on in my mind in terms of what's also giving me hope. It's like, okay, grossly undersupported. This did not work. And also dreaming about what's next in terms of both this season for me being kind of restabilizing. So by nature of my kids going back to school, I'll have my regular work schedule back. So I'll be able to get stabilized here on the podcast and of course in all the other things I do for work and also be able to. start to fill myself back up again, right? In terms of all the different things, you know, Elisa mentioned in turn, like my mental health, my spiritual health, my physical health, all the different things to really just tend to myself better. okay. So that's kind of for me, what I, Recognize that I really learned, in this past season. So what do you guys think? Rachel, go ahead.
Rachel:mine's a little bit, a little bit similar to yours, but, I've been, hosting mom mingles through, we are brave, in my area for, I think almost a year now, and this summer I had to cancel one, In the summer due to a lot of different factors that weren't even related to me. but I have kind of regulars that come now and then I always get a few more moms. And what I'm learning from the new moms that show up, I just had one a couple of weeks ago is how much it's needed because of the lack of support that we all have. And so that's definitely something, I mean, I've always kind of known, but every time I host one, I get. Such strong feedback of like, thank you for organizing this and thank you for just talking, you know, being here. And so that's definitely something that I really, really hope to continue, to grow in and help. it's so rewarding and it's so simple because I don't really do a lot. I mean, I, there's a little bit of coordination and I obviously, you know, pick the date and place that we meet up, but. It's not in everyone's capacity to do that. and it's not always everyone's nature to, to organize something like that. and so I get just the most joy out of, like, I get messages after, like, thank you so much again. Like, that was so amazing. And it's great because we all have such different situations, even in, you know, our disability worlds and there's so many resources given. And then I have more friends, to chat about and we have side chats now and, you know, talk of getting together more often and whatnot and helping them through that is something that I feel like is definitely. My destined future. So that is what I've learned and always knew, like I said, but it's really been reiterated, over the past couple of months.
Kara:All right, Laura, let's hear you.
Laura:First of all, and Rachel, we so appreciate that you put those on and it really does. If anybody else ever wants to run one, it's literally, Hey, we're going to meet on this corner and go for a walk. Like it doesn't have to be like you're doing crafting and all these wonderful things. can be anything. It's really just. Pulling people together and, it is, it's, it's a very validating, feeling and, makes a huge difference. So we really appreciate it. mine is in, continuing with the super vulnerability we have right now, that my takeaway is that I can't do it all. I just can't. And you know what? That's okay. am learning to be okay with the fact that I can't do it all and stay healthy. and, and be what I need to be, right. You
Kara:might be able to do it all.
Laura:Right. but something's going to get, I had this great visual I was going to do for my husband in trying to like, let me help you understand what happens when you drop this in my lap. And I was going to like take tennis balls and label them like work and household and you know, dog and staying healthy and like all these different things. And okay, I can hold one in each hand and I can maybe put like one under each armpit and put one under my, under my chin like this. And then he throws the ball that says camp director. And I'm like, well, shit, something's going to drop. Right. so, my takeaway is that I need to continue to learn, to set better boundaries, for myself that will ultimately benefit my whole family. It will protect my mental health and my physical health. and it will help my relationship. it's been a big problem in my life. I'm not a good boundary setter. I will do, but I realized I just can't keep picking up the pieces of everybody else's mess and putting them back together. and when I learned to start setting boundaries is actually when I attracted my husband into my life. And so, I think I just lost track and then need to right it, right that fan, and continue to learn how to set those boundaries and hold tight to them. So that's my, that's my takeaway.
Kara:Hmm. Thank you so much for sharing. You want to jump in Andie?
Andie:Yeah, I think mine is like twofold. One, I think, and it's not just this summer, I think the big thing I've learned probably in the last six months or so, or just realized, is that, not every overwhelming thing lasts forever.
Kara:Good one.
Andie:I remember, there's been so many seasons where something new happens, and I'm like, Holy crap this is gonna take over our life, this is going to, like, just so overwhelmed, right? Like, when he got his G tube, or he had a nephrostomy tube, which is a drain from his kidney through the summer, and then there's, like, so many things like that that I could list. At the beginning, it's like, This is just going to be so hard. And then you adapt and then you figure it out. And then it's not as scary once you get used to it. Right. And so I think that when he got his nephrostomy tube in the summer, I was like, at first I was so stressed out, but then I caught myself being like, I know this will be easier. Like I know right now this is really overwhelming and really scary and the last thing I want, but I know that this feeling won't last forever, even if the stupid bag does, and it didn't. but I think that has been like. A lesson I'm so grateful for because, you were talking about hope earlier, care, right? Like, just having that hope, like, knowing that that there is something on the other side of this makes it easier to get through. So, I feel like that's been such a huge lesson for me and just given me so much more, like, peace in the middle of the storm. And the other thing I can't remember, so I'll just go with that if
Kara:you do, I want to highlight that like this with whatever, you know, version we say it, but like this won't last forever. That is such a powerful thought, because even if that stupid bag lasts forever, your relationship to it being hard won't last forever, right? You'll get used to it, you'll practice it and you know, you might not love the thing, but you also, it won't be so hard. And I think oftentimes we find ourselves in really hard situations. I mean, that's, I think, you know, synonymous with our, lives and our children, but recognizing that we can, like, we have very, very powerful minds and spirits and that there's always hope. There's always hope. Okay. Elisa, go ahead and jump in.
Elisa:Yeah, so one of the biggest things that I learned, recently, and you could almost say it was an epiphany in a way is recognizing that I'm so often resisting the life that I have. You know, I always want to fix a problem and not only do I want to fix it, but I want to fix it urgency. I had this huge sense of urgency because I want to have that thing fixed right away because I need it done before the next thing comes up. And I know that something's gonna come up. This isn't an if, but a when, right? So I'm always just wanting to just fix, fix, fix, come up with a solution. Oftentimes it's not the best solution. You know, I'm like, if I can just calm myself down and think about it, like I did yesterday and tell myself, I said, I am not making a decision on this. Cause I could have very easily made a couple of like harsh decisions that, you know, probably wouldn't have been the best thing. so the realization of that, I want to fix all these things. I want to rescue or distract from my feelings. And I've now learned that, and through a lot of time and challenging, exhausting work, that my goal is not the absence of negative emotions, because those things are gonna happen, obviously, for anyone. but, I'm so often reminded day to day of the different life that we live, that we're so reliant on a nurse going to school with our daughter if they can't come in, like happened the other day. I instantly have to go, you know, so my goal isn't the absence of having those negative emotions, but to focus on surrendering a couple of my intention words that I have lately, surrendering vulnerability and accepting that this is the life that we were given.
Kara:Oh gosh, that's, there's so much, like, I want to say juicy, but like, thank you so much for sharing. I, I feel like you've developed a wisdom over, you know, as you've been doing this Thanks. Like the heavy lifting that you've been doing. And so thank you so much for sharing. Okay. Well, as much as I want to like really keep going and like stay with you guys forever, we do have to wrap up this episode. So we are going to do that. And as we close out, doggone it, I should have thought of like a fun, like last thing to close on, but I didn't do that. So as we're going to make it up as we go, as we close out, what I want you to share is something that you're looking forward to this next season. And it does not have to be mom related, parenting related, kid related. This can be any part of your life. So one thing you're looking forward to, and then we'll go ahead and wrap up.
Elisa:start. my husband and I are going on a holistic retreat next month in Arizona. And, That's just gonna be something really cool to do together because I initially signed up for it to just do it myself and I was telling him about it and he was like I want to go. Can guys go? And I was like, I don't see why not. So it's going to be just a really good way for us to connect away from home, away from having these, all these constant reminders and do something that is good and healthy for ourselves. That's awesome. That's
Kara:amazing. I love that. He's like, I want to come. well, what's, what's coming up for me is actually recognizing like, Oh, interesting. Like I'm not coming up with anything that I'm like, yeah, I'm looking forward to this, which tells me. I need to create something for me that I'm looking forward to. So there's that. But I think if I think, okay, what am I looking forward to in this next season? I'm like, that's stability. And I've also, Elisa knows this, I've been working so hard to essentially, iterate Pathway to Peace, the coaching program. And the iteration really is, taking the feedback and seeing what has worked so well and growing that part. It has to do with community and really recognizing that the community aspect of like knowledge is like we can all chat GDP notes stuff now right like and listen to my episode a couple weeks ago to recognize like all the different ways we use it but that's not what brings us together anymore it's these conversations it's having each other's backs it's helping others see what they can't see. So I'm looking forward to that and kind of seeing, you know, what grows in this community from that. So with that, who will go next?
Laura:I'll go. one thing, Elisa I think you said you're out in Tennessee, so I know it's not like right in your backyard, but we do have a, we are brave to go to retreat in Savannah, Georgia at the end of October. so just putting it out there. If the timing works and you're able to, you can apply for a scholarship right now. just want to encourage you because we are trying to get more that are out in that area. So, and the speaker is phenomenal. And Jessica is the retreat coordinator. So. you get like a double whammy. It's it's double good whammy. It's really cool. I am looking forward to god willing if I can financially make it happen I'm doing a weekend down in palm springs with my best friend who is also a We are Brave together mom she lives in arizona and I haven't seen her in a while and we've both had, definitely, not as great a summer as we expected or hoped. So, I'm hoping to make that happen this fall. So that's something I'm looking forward to.
Kara:Awesome. I'm thinking I was like, Oh, maybe I should go to the Georgia retreat. That'll give me something to look forward to. So might've solved my problem. go ahead, Andie, jump in.
Andie:okay, so I think mine is, I remembered everything I was gonna say earlier, I feel like I've been in a season where I've pulled back from this community a little bit, which has been like, I think I've felt so inundated, I'm super empathetic, and I think sometimes I get really overwhelmed, like, watching everybody's lives. And I found myself, pulling back and just, I need to, like, not be thinking about how hard life is for all of us for a little bit, you know, and so it's been really great to be in the gym that I'm in, because I'm in a CrossFit gym, which is, like, super community oriented. And so, we've got a couple, like, camping trips and, like, little events coming up, which I'm really excited to just connect with people where I connect on a different part of my life. You know, like, we're like, they don't, they do associate me with the disability and with all of that, but in a very different way, like, they see me and Ben and all of that, but for people to see me differently, like, that's not, you know, and so, I'm really looking forward to that. And I'm also looking forward to one of my main clients that I, work with right now is coming, is ending here in a couple of months. And I'm actually excited about that because then I'm, have more space to do the things in this community that I'm actually really passionate about and excited for. So I'm excited to have more space in my schedule, more bandwidth to pour back into this community. So
Kara:amazing. Yeah. Thank you. Thank you. Rachel.
Rachel:I'm looking forward to I am going to a more local retreat with we are brave, the end of September, and I'm very much looking forward to that because number one it's sold out so quickly and I'm so glad that I got in. And number two, I am bringing one of my best. Disability mom friends, and she's going to come and visit me and go to the retreat. And then I also have another good friend that I've met through Kara that is flying down for it too. So, that will be really fun. I'm going into it, knowing a bunch of the people that are already there. I went last year to the same location, and everything is great. About it is spectacular. So that's what's getting me through till the end of September and my immediate what I'm looking forward to is getting my house back. Oh, yeah. Oh, baby. Yeah, I don't like living in chaos. I don't like living in clutter. And it has just It's not been great this summer with anything related to, clear space for me to walk into. So at least during the day through the hours of nine to three, I will have a picked up home and that will be it. Great. For my mental health.
Kara:Oh, yes. Amen. Okay. Well, thank you so much for this conversation. I'm leaving this conversation feeling filled, feeling connected, feeling hopeful. and thank you for each of your role in that and for who each of you are. And with that, we will end this episode and see you on the next episode.