Facing Control Issues, Embracing Compassion & Crushing Co-Parenting with Andie Torres

In this episode, I sit down with Andie Torres, a fellow special needs mom, author, and "maker of pretty things" for this podcast. Andie shares her journey as a special needs mom, how she is learning to let go of the need to control everything, and the importance of having compassion for those inside and outside of the disability community. She shares a story of how advocating for her son’s health, despite pushback, ultimately saved his life. We also talk about what she has learned in her unique co-parenting dynamic and how they have learned to share their fears and build trust with each other. 

This episode offers valuable insights with a mix of honesty, humor and warmth for everyone. Tune in and join the conversation!

Connect with our Guest, Andie Torres
Instagram: @we.are.takingcare
Website: www.wearetakingcare.com
YouTube: www.YouTube.com/@taking_care


Resources from the episode:

Book: Becoming Brave Together: Heroic, extraordinary caregiving stories from mothers hidden in plain sight

We Are Brave Together Organization

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

Transcript

Speaker 2: 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.

Speaker: 1:14

Hello, and welcome to the special needs mom podcast. It's great to be back with you in this, I guess we'll call fall season. We're kind of in transition. And actually, I mean, I think there's a lot of us out there that love the transition from summer to fall here in Southern California, live in San Diego. It starts to like, it's warm during the day, but cools down a little bit at night. So I feel like it's the best of both worlds. It's gorgeous. The air gets really clear and crisp, and there's just a lot of. a slowing down ness that I personally love. So today I thought it would be fitting to sit down with a friend and colleague and of course a fellow special needs mom. Her name is Andie Torres, also sometimes known as Andrea Torres. So you're going to see her referred to both in different places. She is a fellow author. Of the Becoming Brave Together, the anthology project part of We Are Brave Together. And yes, will be a link in the show notes so that you can check this book out. It is 110%, over a hundred percent worth reading. And it's a book that is easy to pick up and put down because it's a compilation of a bunch of short stories from moms just like us. It was, is, I should say, such a privilege to be involved with This project because of what it's doing, but also just to be associated to these absolutely incredible moms who are many cases further along in the journey than myself, as in their children are older children and or siblings, some, I think just one of the moms is caring for her sibling. She has taken over that role and it is just amazing. So powerful to hear each other's stories. Okay. Speaking of hearing stories, let me tell you a little bit about what we're talking about in the episode. So we talk about letting go of control. I think whether We're all aware of this or not. Well, actually most people I talk to are aware of this. They're aware that they have a high level of need for control and we have a lot of good reasons for that. Yet, we can also still acknowledge that it's not always helpful or even beneficial for our well being. spirits to be this way. Okay. So that is a major conversation we have. We also talk about relationships andie happens to be a single mom. And so we talk about those co parenting relationships, but we kind of broaden it out actually, which the things we talk about apply to pretty much every relationship. So very valuable conversation, particularly because we're headed into a kind of This relationship with school season. I know last night some of the conversations at our home were Kind of based around like developing this new system or I should say Establishing the relationship with the school with all the new teachers and people and all that and a little bit of frustration only because we We don't know how things are going yet. We don't have those relationships set up in a way that we know what to expect and Vice versa the other thing Another thing we talk about is some things that Andie and I have seen evolve, mostly in social media, but I think out a lot of different places in some of the pitfalls that happen as we, moms advocating for inclusion and all the things for our children. Some of the patterns that we see that may not be as helpful as I think we all intend them. We talk about that as well. Thank you. And, before we get to that, let me give you a little bit more formal introduction of Andie. So she is a writer, also founder of Taking Care and a freelance graphic designer. You'll hear us mention in the episode, she is, and I mentioned, she's my colleague. She is a huge part of the Special Needs Mom podcast. She does all of our graphic design. All the pretty things are from Andie. As well as a lot of the writing as it supports the podcast and social media to a big extent. So you have definitely seen Andie more than you realize. let's see what else? She's a mother of four. And her youngest son is her disabled son. And like many of us, his life changed her life overnight. And so through this experience, she's of course led to share and help others and particularly feeling less alone and overwhelmed while they navigate this wild west of medical parenting. I know that you're going to fall in love with Andie as you listen, make sure you connect with her Okay. I think that gives you enough to go on to keep listening and to sit down with Andie and I, or maybe hopefully you go out for a walk or maybe a peaceful drive as you listen to this conversation.

Kara: 6:21

well, Andie Torres. Welcome to the special needs mom podcast.

Andie: 6:25

Thank you. Hello.

Kara: 6:28

You're a returning guest from I guess it would be a couple weeks ago from now on the community huddle episode and i'm sure this won't be your last Okay. I know you, obviously. And so let's help everybody get to know you a little bit. I'd like to start with what I call your becoming. How did you become a special needs mom? And so tell us a little bit about a snapshot of your life and of course that becoming.

Andie: 6:53

well, I am a mama of four kiddos. I had three before I had Benjamin, who's my youngest and my disabled little guy. And I've been single for eight years. And, So Benjamin was a surprise. He was not an expected pregnancy. I was not in a relationship and it happened. And, and we decided to, you know, keep him obviously. And the beginning of his life was of not expecting him. Very typical. we didn't know anything was happening right off the bat. Though there were some things going on, but they're like, Oh, it's no big deal. He's fine. It'll go away. and I kind of relate my becoming as like right before a dam bursts, it's like, first there's a little bit of like dripping water. And then it's like, you know, then the things are shooting out it's like little bit by little bit was our story. It was like one thing would happen and then another thing would happen and then another thing would happen. And then all of a sudden everything just kind of came crashing down as far as all of his medical things and

Kara: 7:56

Yeah. I'm picturing you in the flow of the dam, like all soaking wet, like at the end there, like that's what happens when it all breaks loose. So I like your analogy.

Andie: 8:06

so it was kind of that with that feeling too, of like this anticipation building of like, there's something going on. Like there's, this has to be more here than just this one random thing here and this one random thing here. Right. So it took a long time for, of us pushing to figure out that there's actually a diagnosis underlying all of these quote unquote random things happening in him. in his body and mind. so then he got misdiagnosed initially with a different, really rare genetic disorder. Then it took a year for them to get him the real diagnosis after that. Still he was young for a diagnosis. I think he got diagnosed at two. I think two or, or maybe three right before three or something, which I know plenty of people whose kids are so like way older with no diagnosis. So I feel really grateful for that actually. so, you know, I think as far as For me, who I am as a person, it completely turned my life upside down. You know, like, what is my life now? Who am I now? And will I ever, anything ever be the same again? and obviously it's not, it will never be the same again, but I feel like this last year felt more settled and grounded in this life than before when, before I was like, nothing will ever be good again, right? Like, okay, we can do this. Like we're going to be good. We're going to be okay. There's plenty of joy here. so yeah, that's a very brief abbreviated version.

Kara: 9:38

Well, thank you for the introduction and the great analogy. So this question came into me and I was like, this should be fun to hear in terms of kind of even pulling back, and just understAndieng how your life is. What's something along the journey of advocating and, You know, that's the vernacular we use because it sounds so nice, but it takes a lot to get our kids what they need and to navigate all the systems and all the doctors and all the things. So is there anything that you can think of that you're especially proud of that you have spoken up for and ultimately gotten him what he needs?

Andie: 10:16

Yeah, there's a couple things, but I, I can probably go over like a lot of them, but the biggest one, was there was a season in his life where he was just slowly deteriorating. So he has epilepsy is one of his diagnosis and, And so he just started, like, he's mobile, but he started, like, not wanting to walk. He started, like, not being able to keep focus with us, like, keep his eyes in one spot. He just started to have all these symptoms that did not line up with how he typically behaves in normal life. And the doctors were either like, well, maybe it's a seizure. So we treated that, didn't change. Maybe it's just his disability was a big one. And I was like, I promise you, this is not just his disability. I promise you. And so he just kept deteriorating. So we're like most of the day he was just absent and it was terrifying. I was like, there's more happening here. I promise you there is more happening here. And I'm so grateful. So he has the syndromes, nicolaides-baraitser syndrome. And I'm on a part of a Facebook group of parents. And I was at that time followed it religiously because we were pretty new ish to that group. And I just was consuming everything I could, for good, for better or worse. I don't know. But I remembered a post that one of the parents had posted That had sounded similar to what was happening to Benjamin and it was due to a one of the epilepsy medications that their son was on and so I told them I was like, I think it could be this and they're like, Oh no, that's not what's happening here. He's fine. That's definitely not what's going on. And that continued to happen. And so I just kept pushing. I'm like, I know you don't think this is the problem, but for my peace of mind, can you please run this test to see if this is what's going on? They thought I was ridiculous, but they appeased me. And, enough, he was had, he had toxic levels of that medication in his system. So

Kara: 12:19

enough. I like that. Sure

Andie: 12:21

yeah.

Kara: 12:22

Wow. so much.

Andie: 12:24

You know, his body was shutting down from that medication. And I think that obviously, I'm the most proud of that one because I literally saved my son's life.

Kara: 12:33

Yeah, it gives me the chills to think about this, like that, like you pushing and trusting yourself.

Andie: 12:38

Yeah, and because I was like what would have happened if they just blamed it on his disability And I don't even want to think about what would have happened. But so that's what I when I think about when I think about Advocating for him or pushing for things even when the doctors think I'm ridiculous Like I just remind myself of that I'm like this is worth it Even if it doesn't feel like it's worth it, even if you feel like you're ridiculous You never know and it's worth it's worth pushing

Kara: 13:06

Okay. So two things. Firstly, so what happened? Like the labs came back and it showed what it showed. Like, how did it go? How'd that go? I would love to

Andie: 13:16

Well, they, they didn't reach out. I'm hypervigilant about watching test results. They did

Kara: 13:25

They didn't, they didn't, didn't alarm

Andie: 13:28

No, I

Kara: 13:28

Keep going.

Andie: 13:29

I called their office and sent emails on his, their platform and all the things and said, you know, it was like, as the results show, he has alarming rates of the levels of this in his system. I'm taking him off of it. And they just were like, Oh yeah, that sounds like a good plan. Like that was it. And this was like the neurologist. So this was all neurology because of epilepsy. And so there was no acknowledgement of anything. It was just like, okay,

Kara: 14:02

Yeah. It's, funny cause I do not expect these doctors to be perfect. They are human beings and I think their heart's always in the right spot or at least most of the time. Right. It's very rare that you find somebody that that's not the case, the second thing I was going to just, I Talk about is I have a little something going on in Levi's life, or there is a little something going on in Levi's medical picture that just doesn't sit right with me and It's not big enough Where I'm gonna have to do like a peaceful Protest again and go to the ER and not leave till they help me. I won't have to do that At this point, at least, no, I think we're far from that, but it's one of those things where it keeps coming back to just being like, something's not making sense. This doesn't make sense. And some doctors have really been like, yeah, this doesn't make sense. I think we should look into it, but there's well, definitely not the level of concern I have, because I'm the one watching him every day deal with the impacts of what this particular thing causes. And so I think that's the part where it's like, they don't see the whole picture. And I think that's my beef, man. My beef is like, doctors, I need you to look at this whole human being. And I know that this is your specialty and this is what you're real good at. But like, go the extra mile. I'm laughing because I was going to say like, go put it in chat GDP, just like I did, a couple, so a couple episodes as you know, we talked about using chat GDP. So I'm left here, like, the doctors really are dismissing where we're at. And it's, I'm like, I'm giving it time cause there is a plan for kind of looking at things next. We're going to do labs in a couple of weeks. So I'm like, I'll let them do their thing. But in the meantime, I'm going to keep looking for things. And so I put all of his medications. And I asked for, I don't remember exactly what I said, and I'm not going to disclose the particular medical things because that's his stuff, but I asked for what to look for. What could these, what combinations of these medications or what, how could it be related to this? It was really helpful. And so I'm like, if I'm doing my little chat GDP diagnosis, which I know it's not medicine, like just to be clear, I'm not a doctor, obviously, but I sure am trying to find the answer. And that means a lot. And so I don't know, I'm pretty sure most all the moms listening to us right now will have their own little area that is like, you know, the same, so I'm so glad that you listened to yourself and that we can celebrate that bit of advocacy.

Andie: 16:33

yeah. And I'm with you. I'm a Google warrior. Like, I know there's like this controversy of like, you shouldn't Google things or you should Google things. I personally Google like, until I'm blue in the face. Because one, one I feel like it helps me advocate better. Because, sadly, I think medical professionals listen more to a parent who sounds educated. So, if you know language that they're like, oh, she knows what she's talking about. They're going to respect your opinion more. And so that's one reason I like to do it. Second, there's other situations outside of the Facebook group where I have saved Benjamin's life because of Google. So like you said, doctors are doing the best they can, like they they can't know everything. They haven't read every paper. They haven't. They can't. That's impossible. So if I can look outside of the box and help them to look outside of the box, why not? Like if I'm wrong, that's fine too. Right. You know, like

Kara: 17:36

exactly. I'm like, well, what do we as moms have to lose? If you know, I mean, yes, maybe some time and maybe some expenses and running labs or doing tests like that, that is real. But, but I think you said something that's so important. It's like, I need the peace of mind, you know, for moms like us that have been through, whether it's a cognitive. disability or another type like that's okay if that's the only reason like I won't ever forget. Like so, you know, Levi had a brain tumor when he was little and so that was kind of how we started to this world. And a couple of years later I had a type of headache that I hadn't had before that impacted my vision and like all of a sudden couldn't see out of one eye. And so it was quite scary. And so I went to the ER and told them the whole thing. Cause of course in my mind I'm like, okay, I'm either having a stroke and now you're aneurysm or I have a brain tumor too. Like those were the three options I had. And I told them, I said, I just need peace of mind and they were very kind and they did give me that. And. I suspected that it was a type of migraine, which it is. And I think, you know, some of the people listening be like, Oh, that's a migraine. Cause it was. And so it's a common that people have visual, you know, whatever. So that is a valuable enough reason to run some of these tests as long as they're not harmful. Right. We're not going to like, you know, send our kids to the moon and be like, we'll see what happens.

Andie: 18:57

Yeah.

Kara: 18:57

Yellow. Yeah. Little, little spinal tap here.

Andie: 19:00

Right.

Kara: 19:01

All of that. Right. Okay. All right. Bye. Okay. also, I mean, we hinted toward it earlier, but I thought it's important to mention your role on the special needs mom podcast team. I guess it's kind of weird because I have like my coaching business and practice and the podcast team. So I don't know what we're calling it, but it's under the umbrella. And so I'll let you share like you do the work. What

Andie: 19:23

What do I do? I do a number of things which are all very fun. One of the things is, do some of the behind the scenes like assistant producing of the podcast itself. like final finishing touches on that and then all of the content stuff. So anything that you see on social, any social media platform is essentially, comes from me.

Kara: 19:46

the pretty stuff, all the like sloppy life stuff. That's me. All the pretty stuff. That's Andie.

Andie: 19:52

get to make all the things. Yes.

Kara: 19:55

She makes all the pretty things. no, but also like, I think for me, one of the values of having you on the team is having a thought partner, having a mom, like I know I shared this with you. It was always like years and years ago, it was my dream to be able to hire and employ moms like us, because we know that employment is really challenging when you have a very unpredictable life and a very expensive life, right? Like medical life is. You know, not cheap. So you're fulfilling my dream. So thank you for that.

Andie: 20:25

And you are fulfilling mine. To have someone, a boss, feels weird to call you boss, but that's what

Kara: 20:32

you can just address me as boss from now on in the podcast.

Andie: 20:37

that understands, like even this summer as like life was wild and crazy with summer schedule, you are so understanding and compassionate. And like, that's huge. Or when Ben's unexpectedly been sick, you know, like, To have someone that really does understand that, means so much. So thank you.

Kara: 20:56

Yeah, I'm glad. Yeah. We don't take ourselves too seriously over here. Like, I mean, we are committed to like producing quality, all the things, content and podcast, but also not at the sake of our wellbeing or the wellbeing of our children. So we do try to keep our priorities straight. Now let's do a little transition and talk about, well, actually I wanted to make sure you mentioned the ages of your kids and that they're all boys. Okay. So how, all of these boys, you have a lot of boys. It's so funny when I hear, Oh my gosh, you have, you have four kids. I'm like, Oh my gosh, I don't know how she's doing over there. And then I'm like, Oh, I guess I have four kids too. So like, Oh, I don't know. Like I, it just feels like a lot

Andie: 21:37

know to

Kara: 21:37

I see it happening. Yeah. maybe it's because you have four boys. I don't know. Okay. So how old are these boys?

Andie: 21:44

Yeah, there is lots of energy in my house. That is for sure. So of four, the oldest is 14. So 14, 12, 10, and 6.

Kara: 21:53

I'm so jealous. They're all even numbers. I love even

Andie: 21:57

Except for when it's like right between someone's birthday and then I have a 10 year old and like a, no, what was it? An 11 year old and a 10 year old before the switch. But yeah. Yeah. It's

Kara: 22:08

Yeah. I'm gonna have to work on that next time I have

Andie: 22:10

Next time.

Kara: 22:12

next, next time I plan birth order timing. Okay. We'll add in any details of your life along the way, but one of the details you mentioned, why did you mention? So you are a single mom. and so you're not, currently partnered and you co parent with two different dads. so your, your first three children are with your ex husband and then Ben is with, what I'm going to call him as Ben's dad. I don't know what Ben's dad, but actually, and I have always heard you refer to his, So Ben's dad's wife. as his other mom. I've never heard you use the term stepmom. Not that there's anything wrong with that at all, but I think it speaks to the relationship you have with her and him. stands out to me as very unique, especially since I coach a handful of single moms and I get to hear the story. struggles of what it is like to co parent, even if you have a good relationship with somebody. So I thought you'd be a great person to kind of speak to it. First, share a little bit about how you guys have figured out this co parenting thing and kind of You know, just giving your a little bit more of your picture and your explanation.

Andie: 23:27

Yeah. Well, for sure, like I understand both sides of that coin because I do have two baby daddies and so my co parenting relationship isn't as successful on the other side. And so, I think that's like the first big thing, right? Like it really has to be. Everyone wanting it to go well, like everybody has to be fully invested in making it work for it to work. It can't be like you can have the best intentions, but if not, everyone's not on the same team, it's not gonna, it's not gonna

Kara: 23:59

Well, I would say to work easily because to work easily, right? Like I think I see moms making it work, but it's not, it's just so much more work and emotionally hard. So, but to have it work a little bit more seamlessly, I think is what you're pointing

Andie: 24:13

Yeah, or even like the way you imagine, right? Because for me, I think I just envision like being able to create an environment for our kids where there's support from everyone on every side where, you know, we can all work together and all those types of things. And so, the dream, right? Quote, unquote, the dream for co parenting. So, but that's a very valid, qualification that you made. So Ben's dad's name's Chris, so we'll, so if I say Chris, that's who I'm referring to. His other mom's name is Heather. So when Ben was initially born, Chris was single, and so we tried for a couple months to see if maybe it could work between us and it just was not a good fit. But then he'd started dating Heather shortly after. So one thing I'm very grateful for is that Heather came into Ben's life when he was an itty bitty baby. And

Kara: 25:03

hmm.

Andie: 25:04

he's only ever known that he has two moms.

Kara: 25:07

Mm hmm.

Andie: 25:09

at first that was very hard for me, actually, like

Kara: 25:12

I can imagine. Ooh.

Andie: 25:14

thinking, thinking, like it's making me emotional right now. Like thinking of him. Calling somebody else mom and not knowing that there was a difference. Like, and now he does, he does know a difference, which is wild. Like, but you can see that he knows the difference between the two of us. and even when he was younger, we could see that difference, but that fear in me that like, well, he know that I am his mom, like that, I, carried him inside of me. And then I didn't even know that he was going to have any, Intellectual disabilities either. Like I didn't know that he might not even comprehend it intellectually, but it's pretty incredible to see how he knows, like, you can tell he knows even just energetically, there's just a difference there, but that was so hard. and so initially it was a little bit rocky. It took a little bit of time for us to get our egos out of the way to get. Like my desire to control everything out of the way. And for us just to figure out, I think we really had to figure out our rhythm. And for me and Heather, I think we really had to just, well, all of us, but I think me and Heather, most of all had to learn to trust each other. And especially when everything started happening with Ben's medical stuff, like. You have a choice in that moment, right? Like, if we fight this, this can be really challenging. Or we can choose to step into, like, really being vulnerable with each other. Which is what it requires, and like, be a team.

Kara: 26:48

Mm hmm.

Andie: 26:49

over time, I think Heather would, say the same thing. We are one of each other's closest friends. Like we have built the type of relationship where we're the person that we message if we're really frustrated with something or, you know, like we have built a type of relationship that's just so open and so vulnerable, which I think some people would probably relate to. Like when you are struggling with something with Levi and you go to your husband, like there's a bond that you guys have over this shared trauma,

Kara: 27:22

Yeah. A hundred percent. Or that they just so deeply understand, like, and are the people, the front runners for caring, right? Like it matters to them more than anybody in the world.

Andie: 27:33

Yeah. and she cares for Benjamin just as deeply as I care for Benjamin. She fights for him. She's, advocated medically for him and education and so many things. She does all the things with me. And so, she doesn't have to do any of them. You know, so she, just shows up in so many ways that are absolutely not necessary, but her, her love is just so deep. And so that has been an amazing connector for us and yeah, just to have someone when you like, I'm really sad about this today and to have someone who actually really truly gets it. or he said one word today and to have someone who's like, what, you know, to celebrate with you in a way that other people wouldn't understand too. It's also really huge. So

Kara: 28:24

Yeah. It's like, this might get creepy, but did you ever watch the show Sister Wives?

Andie: 28:28

yes, I did.

Kara: 28:29

Okay. And I'm not suggesting that's what's happening here. But the reason I say that is because some of my friends, not special needs related, but we always joke, like, you are such a good wife. Like, it would be so great to be married to you. And we're like, let's just sort of commune. We're like, we can just all support each other. And again, not the sexual part. That is not. For me, but, yes, exactly. That's exactly what I was getting at. So in a non creepy way, it sounds like you have a really good sister wife and it's pretty phenomenal, I think, and you know, what it creates for you and of course, Ben and the ripple effects on your other kids as well. you mentioned something about it took a bit for you to let go of your desire for control. How did you do that?

Andie: 29:16

Very slowly.

Kara: 29:17

that, how'd that go?

Andie: 29:20

Well, first thing was I didn't have, well, I had a choice. I had a choice, whether it would be easier, it would be hard, but I had to share, I share custody, right? So off the bat, I'm giving my baby to someone who was not in my home. And that was like the first type of control that I, I had no control over that. Like I lost that control and I just had to learn how to deal with that. Which was so hard.

Kara: 29:50

Wait, pause for a second. Cause I'm obviously a little ignorant. How early,

Andie: 29:56

Did we start?

Kara: 29:56

first off, nosy question, but did you nurse?

Andie: 29:59

I did.

Kara: 30:00

Okay. The reason I, it applies because obviously you can't be like, Oh, see, I'll see you in a week, Ben. Good luck. how does that work?

Andie: 30:07

for the first two months, he was exclusively with me. Okay. Because of that, because it's like every two hours, whatever he would go. And I would pump when I had to go to work. So I was teaching yoga at that time. So I had a very like non traditional schedule. So I would pump and he would go with Chris when I worked. So that was like his dad time. Cause I worked at night. and then at two months old, when I was his nursing schedule was like, there was longer breaks in between was when we started doing, I think we started at a two to five schedule. I can't remember all the logistics, but we had it. No, it wasn't 225. Maybe it was like 223 or something. because it definitely wasn't five days away, but we started a schedule where it was more days with him and more days with me. And then over time we've built it to where right now it's a two to five schedule. but yeah, so that those first two months were like, there was no way I can, I cannot even imagine. There's like no way I could have something, no more baby away from me. Even if I wasn't nursing, I don't,

Kara: 31:05

Well, exactly. Like it, it kind of applies and it kind of doesn't. And even I'm sure it wasn't like, Oh, he's two months old. Like this is now easy. I'm sure. Like you said, like it was. Yeah. Like super, Hard. Okay. So, but back to, how you did this. He said, I saw that there was a hard way and I saw that there is an easy way.

Andie: 31:23

Yeah.

Kara: 31:24

how do you think you picked up on that?

Andie: 31:26

Well, I think, like, And that's why I said you have to let go of your ego too, right? Is because I could fight if I wanted to get my way every time I probably could have, but it would have been a lot of fighting, a lot of like, breaking of any kind of trust that was built in our relationship, right? A lot of tension, it just would have created so many ruptures that were not healthy or sustainable long term for any relationship and a co parenting relationship. And so I was like, if this thing is going to last, if we're going to build something that is actually going to like last over time and create the dynamic that we want for. Benjamin, I have to set aside what I want all the time. And so then it's like, okay, it's evaluating what do I want versus what is most important? Like sometimes what's most important is not necessarily what, I want, you know, sometimes what I want is just cause what feels best for me. but what's, most important for everybody involved. Which is like, even practically now, that's like, if Benjamin's in the hospital, like, sometimes I have to leave and let them come to the hospital. Especially, we were there during COVID times. So, a lot during COVID. So, only one person could be there. The last thing I wanted to do was leave Benjamin in the hospital, but it would be selfish of me. To not allow Chris and Heather to be there too. And so I had to be like, okay, I'm going to leave. And that was so hard, but that was at everyone's best interest. and making decisions, sometimes making decisions about like. what types of interventions we're going to do or what therapies we're going to keep doing or stop doing or those are things you don't always agree on. Right. And so, like, again, maybe we try it for a little while. Maybe this is the right choice or not the right choice. But again, it's like, okay, if we don't do it, what are the risks and benefits? What do we do? And I think just being open. It's just you have to be open to collaborating and not. If it's not a life or death decision, then being flexible to trying things out and making things work and making changes as you go.

Kara: 33:48

hmm. Mm hmm. Definitely.

Andie: 33:49

Oh, this is one more thing. I just thought of my note. And I think believing the best in the other people.

Kara: 33:55

Ooh, that's a good one.

Andie: 33:57

that they have the best interest of everyone in mind too. Because I think it can be really easy to feel like it's just like, an attack of some sort against you, when really it's not. And like, being like, I know they have the best interest of Benjamin in mind. I know they actually have my best interest in mind too. And that has played a huge part in being able to trust our dynamic and that over time that does build even more to where it's like, maybe initially I wasn't didn't totally believe that, you know, it's like, I don't know if they do. I'm going to trust that they do. But now, like, without a doubt in my mind, I know that we all have that. each other's best interests in mind. so like even right now we're working through some slight changes with our schedule and things needing to adjust a little bit. And it's tricky, for sure, but we all know that we want it to work for everybody. So even through the stickiness, we, understand that we're there for each other. So it's not always just like super butterflies and rainbows, but having that like, It makes all the difference, I think. Yeah.

Kara: 35:09

A hundred percent. It's so funny because I, don't mention a ton on the podcast, but I work in, inside organizations, coaching individuals and coaching teams. And so I get to hear both sides of a relationship. So inevitably people will be struggling in relationship and so I get to hear the inner thoughts of each party and where they're struggling. And it's these narratives that we create, all of us do this, right? It's not just the, right? Like, so we're all, victims of our own thinking. But you mentioned something like, well, like, giving them the benefit of the doubt, believing that they have everyone's best interest, right? And this sounds so small and subtle, but actually it is so huge because, I happen to be coaching these two individuals right now that both want the exact same thing. They both want the better relationship. They have the exact same belief about each other that is limiting that. And it's so clear over here that it's just completely like their own fabrication and not like they're lying. Right? Like it's not a fabrication creation, right? We create, we're story making beings, right? All of us have this way of, putting on different filters, listening for confirmation of where we, where we're like on point and when we're not. And so with the example that you gave of like really believing that they ha they are working as hard as you are to make things work for everybody will change the way that you hear things. When we have these filters on, we literally hear. different things. Like our brain tunes it out. I love neuroscience and like the things that our brain does. My, I don't remember the show, but my kids were watching this show like it was a while ago, but it was even talking about our actual hearing the things or vision, the things that our actual vision filters out. Cause it doesn't think we need to see it. Like it is crazy. Anyhow, this is the total tangent. I should probably, go watch those shows again because I could give a better like actual example for what happens, but it was fascinating. okay. So back to control, anything else you can think about in terms of how you let go of some of this control along the way?

Andie: 37:28

I think, communicating your fears to the people.

Kara: 37:33

Oh, wow. That is amazing.

Andie: 37:35

And which is incredibly scary and vulnerable, especially when

Kara: 37:38

That's what you had. Yeah.

Andie: 37:40

right. But one, I think that's why Heather and I have such a deep relationship now. Because it's like, you know, that Brené Brown saying, or it's like, I can't remember it exactly, but the closer you get, you can't hate someone up close,

Kara: 37:54

Yes. Yeah, yeah, yeah.

Andie: 37:55

When you show your soft underbelly to someone, it's going to be much harder for our walls and our defenses to be up. And so Including myself. So if I come to them and be like, Hey, I know we need to make this choice or this decision or this change, I'm having a really hard time because I'm scared of insert, whatever I'm scared about. Then I, because of the relationship that we had built, I can trust that they are going to consider that and at least be sensitive to that in our decision making process. and I know the thing that's hard is like, not everyone has that, right? Like not everybody has the relationship that I have on the other end. And I, I know that makes things much more challenging. like I said, I know because I do have that dynamic on the other end. And so on that side of things, like on the side of things where it's like not so easy, I think that the way that I've let go of control in that situation is that, I feel like I'm giving away my power if I let someone else control my emotions because they're not acting in a way that I want them to. And I did that for a long time with him. Where I was being emotionally drug around and it was so hard and so I was like, okay How do I want to live my life? Do I want to live it? Do I want someone else to control my emotional inner world or do I want to control it? Like I have that choice And so when things don't go in the way that I would want them to I've just learned over the years to not take it Personally like this is not about me This is everything to do with this person and not with me. Who knows what's happening in their world right now that's making them react this way. I have no idea. All I can do is like, choose how I respond in this moment. And so I've very clear boundaries, like certain things I do, certain ways I will and will not engage. we typically only engage over text or email. Which is actually not my choice, but the, way I engage these words, I use the responses I make when and how I respond, like those are all very intentional, to make sure that I'm being respectful, but also setting very clear boundaries of how I will be treated and not be treated.

Kara: 40:20

Oh, man. Firstly, I can tell you have done a lot of work to get to this place. So applaud you. Well done. And I'm really proud of you.

Andie: 40:29

Thank you.

Kara: 40:30

I want to emphasize what you said because it was so good. You talked about giving away power. You're not willing to give away power. and let something emotionally control you. And we're obviously talking about relationships, but, I want to even emphasize is this is everywhere. And this is a skill. So this is obviously a skill that you've worked on. And I think I want to mention that because even if maybe they have, you know, this second relationship that you're talking about, whether it's in a married relationship or not, like you know, that exists in terms of having a lot of hard, times in a relationship even. in being married, but the skill of learning how to not take it personally, the skill of being able to reclaim your power. And it sounds a little hokey to say it like that, but it's, so true. I don't know any other way to say it. So

Andie: 41:22

I'm, that's, that's, the way I move. So that's how I say it.

Kara: 41:25

I like the woo. I'm into the woo.

Andie: 41:28

Yeah. And I, even as you were saying that, like about it being, it doesn't even have to be about relationships. Like, I even think that that's such a powerful lesson I've learned in thinking about Ben's future and our future. Like there are so many unknowns and the future does not look incredibly bright And I did let that run my world for a while. Right? Because it was just, one, I think it was the beginning and that's just how it goes, I think, kind of in the beginning, but I was like, okay, I can sit here and think about the future all day long and plan for it and prepare for it and do all of these things, but I am losing. I am giving away my power to something I cannot control. And so, yeah, I think that was a really big area too, that I think pertains to that. That's been, I have so much more peace of mind in my life because of that now.

Kara: 42:26

Well done. As I'm sure you know, it's always a constant, continuing to do the work too, right? It's not a one and done. Unfortunately. okay. So wrapping up that part of the conversation, is there anything else that you would add? Just that, you know, what you've learned in both of the co parenting relationships that you feel like would be something that you would, just, you know, talk to another mom about and just say, Hey, You know, maybe consider this or consider that anything that comes to your mind.

Andie: 42:53

Yeah, I think, I think treating everybody with the respect that you would want in return. So little things like, Hey, thanks for sending that email. Hey, thanks for dropping so and so off today. I appreciated that. Or saying please when you ask for something or like just little tiny acts of kindness go such a long way. And I think that that respects, like, I think it just pays you back.

Kara: 43:29

Yeah. Well, the thing I would add is saying it and meaning it. Cause I think sometimes what they, what people do, they try to say the right things, whether it's even email or not, but it's still. This is where, you know, to get a little woo, you know, the coaching that I do is based on ontology. So it's not about the outside what we're doing. It's really about the inside who we're being. And so if the inside is like, F you, but on the outside it says, thank you. That comes across. It lands, right? Like you can't, you can't camouflage it. even though people think that they are tricking the system, you're not, we're not tricking the system. So the work is to actually generate the place in which you can be genuinely grateful for the person that you do have a hard relationship for, but yet also is the co parent and is doing something if you actually look, you know, look closer. So I love that. Thank you for sharing that. Okay. another thing I wanted to talk about, cause I, you know, I follow you and all things you do. There was a conversation you brought, I don't know, a couple months ago, and it, it really stuck out to me because I was like, Ooh, this is juicy because social media has, as we all know, has its benefits and it has its, I don't know what else we'll call them, but the other stuff. What I see is like, you know, people kind of ride waves and it's really easy to kind of be more of a follower than it is to be like an actual thought generator. So I think we see a lot of that, but you, posted something, I'll read it. Just the, main post, and then I want you to share a little bit of the backstory of what prompted you to post it. So what you wrote simply was maybe show the same compassion we expect others to show to our children. So, if you will share a little bit of the backstory of what prompted you to engage in that conversation.

Andie: 45:22

Yeah. it's twofold. I'll share my social media experience and then my personal experience. So on social media, I think that actually let's flip that. I'll share my experience first. I, especially in the beginning was like really sensitive. To the way people outside of the disability community talked to me and everything felt like an unintentional Judgment devaluing or Lack of understAndieng. felt so just isolated and shut out and That affected the way that I thought about people. Right. And like you just said, like, you can choose the way you see things. And I felt like, because of what I was going through, I was seeing all of that. Everything felt very isolating and othering. I remember I would post things and I've seen like memories pop up where I would be like, you know, if you are friends with someone or. around someone who has kids with disabilities, this is what you should not say. And this is what you should say. And because I thought I was trying to help people. I wanted to help people understand how to make other people feel more understood and seen.

Kara: 46:42

Mm hmm. Mm hmm.

Andie: 46:43

and then recently on social media, I don't know, I don't know how long it's been. It's been building, I feel like, but I feel like I've seen posts of similar vibes, right? Where it's like calling people out who are outside of the disability community on, Staring in public or I don't know lots of different things. Just being like, can you please do this differently? Why don't you do this differently? You should do this differently. but more in a tone of like, you should know this or, you know, like, and, and not to discount the fact that we do need to call out things, right? nothing changes if nothing changes, but I feel like there's a way to do that. So I feel like the thing that I don't remember what my aha moment was for this, but I feel like it's been building like this aha moment. I was like, you know what, like. They don't know better. Like, I didn't know better before I had Benjamin, I didn't know that, you know, if I look at you at the playground or I say something that I could say the wrong thing, right? Like, there's so many things that I have said in the past that people say to me now. I'm like, how? Right?

Kara: 48:06

mm hmm, mm hmm.

Andie: 48:08

people just don't know. And I think it's the same thing. It's like believing that people have the best intentions. I think that most people genuinely sincerely do. And so I think as I've continued to see those posts, it's just like, man, I feel like we're doing the same exact thing. I keep thinking of playground examples, like a little kid or a parent who like tells their kid to shy away from the disabled kid because they don't want to embarrass them. Right. And someone gets their feelings hurt, understandably so, because they don't want their child to be isolated or to be seen as different or just that exposure is so vulnerable. And I get it, but I think, what's happening, I think what would happen in my body is because I get protective of my kid, I go on the attack and do the exact same thing

Kara: 49:05

It's not

Andie: 49:06

making assumptions about what's happening and judgments about what's happening on their end of the playground. Rather than being like, Oh, maybe they're trying to not embarrass us or not draw attention to us. Maybe they're worried that they're going to say the wrong thing and they don't want to hurt my child or me. And I think just trying to put ourselves back into those people's shoes. Like we've all been in those people's shoes before. Every single one of us has been that person before. And that's, so hard. Like I say all of this and it's not an easy task because it's your kid.

Kara: 49:46

not. Yes, exactly. Cause it's so, oh, it's just like the closest thing to our heart that there is as you're talking. Well, thank you for sharing everything you have so far. And I think that what you're talking about, like in kind of coming out and making like black and white declarations of like, this is wrong and this is right. And we've talked about this before on the podcast, especially related to like language around disability, but making these black and white statements, I think that they're genuinely like good. hearted or well intended is the better way of saying them, but I think the unintentional byproduct of them is it actually creates isolation because now we have rules of engagement. And so people don't want to break the rules. And so they're going to be like, I'm not playing. I don't know if I can win that game. And that sounds, Like it, it's going to be pretty bad if I lose it because you sound a little bit angry about it. But I'm also thinking, okay, so you've also talked about like, really, really owning the fact that. But before we were in these shoes, we could have very well been the person that's doing the thing that hurts or is offensive or is in whatever way we don't like, like really we could have been and probably were if we're honest with ourselves. And I think we forget that and I don't know, for whatever reason, as you were talking like it, made me kind of picture any one of us dropping into a completely different culture. So India came in my mind like if someone just dropped me in the middle of a remote location of India, I would have no idea what I was doing. I would be completely inappropriately dressed like right now I'm wearing a tank top dress. I don't know India that well. So maybe in some places that would be totally fine. But here let me just say like it probably wouldn't be

Andie: 51:29

Like, but that in itself is like, you have no idea how you're supposed to dress

Kara: 51:33

Yes. Thank you. Yeah. I was like, I don't know. Am I okay? Am I not? Okay. And like, I think like that one in that space, let's hope that they have compassion. I'm sure they would have compassion and be like, Oh, this lady is clearly not from around here. That's obvious. Let's help her. Let's actually like tell her, Oh, by the way, we're going to need to cover your hair a little bit and your legs and your arms. And you're going to probably need to learn how to talk because we can't understand you. I mean just like how really recognizing that this. Is an entirely different culture than any of us were in, and actually the podcast is going to be coming out right before this one. If I remember my order. I am talking about culture as it relates to the cancer culture, disability culture and special needs mom parenting culture because it's all of that really. All different. They all have their little flavors and a little do's and don'ts and the parts that like the emphasis and it's really, really interesting to kind of step back and watch. So that was your personal, like, this is kind of where you evolved to what prompted you. I think you're going to point to like another thing that kind of prompted you to have this conversation on social media.

Andie: 52:43

Yeah, I think I was trying to think back to the exact I think the week that I posted that I feel like there were I'm just a number of different posts that were like Don't do this like very adamant very Strongly worded, well intended posts, and I just felt so uneasy because just like you said, we want more. people outside of the disability community to have compassion for our children and for us and for our experience. We want people to want to get to know us, right? But we are isolating people and making them scared. And I can remember times where I knew that people were scared to talk to me cause they didn't know what to say. And so I was just like, man, we are biting ourselves in the butt right now because we're like putting these big signs up of like, do not enter. It's scary here. Like, you know, like unintentionally, shutting people out. And so I was actually a little nervous to post that post because it felt a little bit counterculture to what can be, and still is, I think very typical right now. Which is like stand up, defend your kids, thousand percent. I'm on that bandwagon. And also can we come alongside people who don't know this experience and be like, Hey, I totally get it. This is like a totally different country you're in right now. but also not just that, not just educating people, but also Not expecting everyone to do it right like quote unquote right like there is no right Unless we're supposed to give a correct medication dose or a surgical procedure, which we don't do

Kara: 54:41

And even that there's so much discretion on doses and is no

Andie: 54:45

Yeah, and so giving people the freedom to make mistakes giving people the grace to say it wrong Raw quote unquote wrong. I don't even like that. I said that but like Just being sometimes I feel like sometimes we don't even need to respond to something that was said that hurts you. I feel like sometimes it's like, you know what? They didn't mean it. So they don't like over time, if they're in this world long enough, they will get to the point where I am like, Oh, I said some not very tactful things like, and I don't do that anymore. You learn as you're in the community. So if we just give people the space to be a part of the community, I think they will learn as they go. If they have, the safe place to land there, you know?

Kara: 55:32

yeah, it's much more likely. Well, I think if we look at what you shared about your personal, we'll say evolution, when you were, still in the more formative years for you as you addressed it to being the mom of Ben, you. Like, we all are going through like a lot of discovery, transformation, trauma, grief, all the things. And so I think, you know, it's so understandable that we're really sensitive because we're trying to figure out how we fit in. And so I think we can acknowledge that like we are doing the best we can. Right. So if we find ourselves showing up in a way that is perhaps, you know, more fueled by like reactiveness and anger. And this is when we get to have compassion on ourselves and have it be like a little notification to ourselves of like, there is an opportunity for you to process that it's probably a cue that, Hmm, something might be off here. If we have this experience that ultimately, like you said, it's like isolating, it ultimately creates isolation. Yeah. I think recognizing that there's this, aspect of like deep loss and it hurts. And we, as a result respond in all these ways, such as some of this othering and like stepping in to be, an advocate, but an advocate in the way that kind of isolates

Andie: 57:00

Yeah.

Kara: 57:01

us from other people.

Andie: 57:02

Yeah. Yeah. So it's like, I even think like, I heard a song as I was driving here earlier, that was like showing compassion to all the previous versions of you. Right. And I think back to that previous version of me who was exactly like that. I was like an open wound. Like all of me was an open wound that was simply reacting from my pain. Every time something touched me, it hurt. And so. It's like, and I can have compassion for that person. That was such a hard season of my life. And like you said, I was doing my best and I know that everybody genuinely, I think everybody is doing their best. like just as I'm sitting here showing compassion for myself, I want to show compassion to the person who posted that thing on Instagram. Right? There's a reason they posted that. Like there's something going on with them. Maybe that happened to their child specifically that was super hurtful. And this is the way that they're feel like they need to get that out. And that's okay. And I also want to be compassionate to the person they're posting about, because that person was also probably going through something or just completely naive to what was happening in that moment.

Kara: 58:18

I'm picturing a mom on both sides of a classroom where one mom might see a disabled child and think. We know ignorantly, but think that child is going to take away the attention from my child. I don't want them in my class. All right. This is a very common human experience.

Andie: 58:36

Yeah.

Kara: 58:37

cause that hurts, right? To be like, you don't want my kid. You don't think my kid's good enough for you. Right. That's not a pleasant feeling for us, but to really recognize, okay. On the other side of that, to really actually step into her shoes and be like, I can understand why she's afraid. And I can acknowledge that in some cases, yeah, my kid's going to need attention. And that could, it could mean that your child doesn't mean, doesn't mean it's going to happen, but it could. And to really have a conversation about, okay, how does this work for everybody? How can this work? But really it can't start from the place of you're definitely wrong and you're a jerk for thinking that And that's my beef with social media is like people have their thing and then they go in there and like, everyone's like, I'm right, I'm right, I'm right. And it's just. Just a little bit, a little bit too much, but yeah, that's the example I think about when you're talking about, compassion for me, compassion for you. I love that.

Andie: 59:30

Yeah. So I think it's also much easier said than done, right? Our journey is forever happening. Our healing is forever happening. So it might be easy one day and the next day it's like the hardest thing to do to show someone compassion. So, it's definitely a work in progress. Like I posted something, I don't know, six months ago being like, If you aren't my kid, don't call me mom, you know, like, because doctors all call me mom and I'm like, that's

Kara: 59:56

Oh, that. Oh, that's hilarious. If you aren't my I was like, who's calling your mom? I'm like, oh, I see.

Andie: 1:00:03

So, you know, like

Kara: 1:00:05

That's a good conversation. We should have that.

Andie: 1:00:06

it is a good one. I'm not always perfect. I also sometimes show up being like. super fired up about stuff and not having as much compassion as I could. but actually in that post, something I really respected was I had some of my other disability moms like chime in and be like, here's my perspective on it. And that was different than mine. And I was like, I respected that so much because I'm like, yeah, that's a really great way to look at it that I hadn't thought about. I had one of my friends who is a doctor that works with kids. chime in about like how it was for her as an actual physician and how hard it is for her to remember names, but how deeply she wants to. And so it's like, I think opening conversations is valuable. I think I could have done that in a better way that wouldn't have been isolating, but still opened a valuable conversation. but I am grateful for the people who were willing to chime in in a really kind and respectful way and help me think about it differently.

Kara: 1:01:08

But it's all founded in conversation, right? Like, I was having a conversation on that topic, with my friend who was in nursing school and she was like, yeah, this is what they tell us to say. It feels kind of awkward. do you like being called mom? And like, we talked about it, right? And I was like, I don't love it, but also I'm kind of like, well, what else are they going to call me, you know, like, doctor, you know, 100 comes in, you know, the IC room, like,

Andie: 1:01:32

hmm,

Kara: 1:01:33

When you really recognize, oh, if I was in their shoes, what the heck would I do? Oh, oh, I probably call a mom or something like that. Okay, that's a tangent, but it's a good one

Andie: 1:01:43

Something someone suggested to me was to ask to have your name is written at the top of their medical chart. So when they go on the computer, they can see like parents names, which is hard with me and Heather because who knows which one we are. but still like then they see it when they go into their chart and it kind of keeps it top of mind or even saying like, Hi, my name is Andrea. Nice to meet you. Andie, whichever name I chose that day.

Kara: 1:02:09

Well, yeah. Or like, just to your point and like, and again, we will wrap this up like to actually go to the step of, you know, let's just say you are inpatient. So a lot of people are coming to call you a mom, like your nurse for the day saying, you know, I really like to be called Andie

Andie: 1:02:22

Exactly. Yeah.

Kara: 1:02:28

well, you know, they're human. Like they also have like five other patients or whatever the thing is. So, or kindly remind them again. Okay. Love this conversation. Juicy, juicy, and, it was so great to talk to you. You know, now you have two punches in your punch ticket. We'll get you that third. You've, you've earned a third. We'll get you on again.

Andie: 1:02:48

Can't wait to

Kara: 1:02:49

And, and we have to think of the prize still. All right. Well, we'll see you on the next episode of the special needs mom podcast.