Bringing Balance Back to the Language of Disability with Effie Parks

As a fellow traveler on the path of special needs motherhood, I found a kindred spirit in Effie Parks, a standout voice in the rare disease community who sat down with me for an honest, empowering conversation. Effie and I explore the sensitive topic of language and how it is used in our caregiving and advocacy. We challenge some common narratives we saw perpetuated through social media in 2023 and offer alternatives ways of thinking and relating to ourselves and each other. 

Effie also shares her exciting new initiative, Once Upon a Gene Therapy. Her mission is to empower fellow caregivers, through walking, to remember who they are and find strength through movement & community. 

Connect with Effie Parks:

Effie Parks doesn't mind being called "strong": Article

Once Upon A Gene Podcast: Spotify

Once Upon A Gene Podcast: Apple

Once Upon A Gene Therapy: Walking Club FB Group

Once Upon A Gene Instagram

Once Upon A Gene Website

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

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

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

Transcript

Kara: 1:54

Hi, I'm Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible, and the dreams I once had for my life and family felt destroyed. Fast forward has 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 this special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. Thi s isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome, hello and welcome to the special needs mom podcast. I'm so glad you're here.

Kara: 3:09

I just got finished recording an episode with, I'm going to say it, the famous Effie Parks. I think there's a very good chance you know who Effie is. Well, I should say, especially if you have a child that has a rare genetic syndrome or condition. She is definitely a leader in this space and somebody that many of us look up to, including myself. And if you haven't heard of Effie, and even if you don't necessarily have a child who has a defined genetic disorder, I know her podcast and her community is definitely worth checking out, so please do that. Let me tell you a little bit more about Effie before we get started.

Kara: 3:51

Effie's originally from beautiful Montana and has become a guiding light in the rare disease community following her son Ford's diagnosis with CTNN B1 syndrome. Settling in Washington, she transformed her family's journey into a crusade for advocacy, support and empowerment for families navigating similar challenges. As a host of Once Upon a Gene podcast, Effie has been recognized for several awards, including WEGO Health and Podcast Magazine, for her impactful storytelling and resource sharing in the realm of rare genetic disorders. Effie extends her advocacy through speaking engagements at medical and patient advocacy conferences, sharing her experiences and insights from her work to bridge the gap between all rare disease stakeholders. Her skill and community engagement development through her advocacy empowers her efforts in building a supportive network and raising awareness, with a mission to leave the world better than she found it. Effie is dedicated to fostering a more informed and empathic environment for those impacted by rare diseases. Her work embodies resilience and compassion, inspiring and uniting the rare disease community.

Kara: 5:00

Effie's journey is not just about sharing stories. It's about driving change and creating a lasting impact in the world of rare genetic conditions. The conversation that Effie and I engage in is really inspired, or, I should say, manifesting our shared vision, I should say, and that is about driving change and creating lasting impact. And particularly what we're going to talk about today could be a little controversial, and we're okay with that. We're pushing up against some of the trends and themes that we've seen emerge quite strongly, and really be rallied around, on platforms like Facebook, but she and I think are more active on Instagram, so heavily on Instagram. And if you're not on Instagram and you're like, what are you guys talking about?

Kara: 5:49

Consider that all of us are finding a place to belong that this journey was probably not what we expected, and part of that can be very disorienting because we no longer fully relate to the communities that we once had, and so what Effie and I have seen emerge is a disempowering relationship to who we are as moms, and we're going to share the details. So, even if you're not on social and you're not necessarily connected to that space, definitely still applicable because I think we're pushing up against some easy beliefs to start embodying, and Effie and I want to just say pause and really inspire personal thought and really thoughtful reflection on where you land and where you want to stay. One of the things I love about Effie is that she really represents and shares both sides of this journey, and at the end of the episode we're going to talk about an initiative she started earlier this year that gives us all an opportunity to join alongside her in a very fun, engaging way, that I dare say, has the potential to change your life. Okay, well, let's get into the episode. Effie Parks welcome to the Special Needs Mom podcast.

Effie: 7:08

Hi, kara, it's so nice to be here. Thanks for inviting me on your show.

Kara: 7:12

We were talking before the show and I was like we've walked by each other in hallways and on the Instagram, but I feel like this is our first time really getting to sit down and talk, and so I'm really excited about it, because you and I have talked a little bit over on Instagram about some things that we're noticing and seeing that we're not necessarily fans of, so we're going to talk about that, but before we do. Anything else, okay, I want to give people that don't know you yet a little bit a picture of who you are, your daily life. I'd love for you to share about your podcast, so want you to share a little bit about yourself.

Effie: 7:43

Sure, I live in Seattle, washington with my husband and my two kiddos. My seven-year-old son, ford, was born with an ultra rare neuro developmental disorder called CT and NB1 and, as you and all of your listeners probably know, that is a giant crash landing into a motherhood world that you never expected to ever be in. It's a very isolating, it's very confusing, it's all of the things that you could imagine that don't feel good and I did not like it. I did not like it. This awareness moment where I was like I'm not answering the phone, I don't care about anyone right now because they're so different than me. I don't have time to care about anyone else right now. Everything hurts, everything is awful, and I don't like feeling this way.

Effie: 8:34

So, you know, I I just kind of started searching for people who are like me, because it was clear that it wasn't in my daily life and obviously you, you have to resort to the internet, especially in the beginning, to kind of find your footing in this world, because it's just not out in our faces, right, it's not in daily life usually.

Effie: 8:53

So I started looking for things that had the word disability and I had all these words in it, right, and I was trying to find content to consume while I was out on my walks and while I was in my car taking my kid to the doctors, and I eventually found a Podcast that, just like, spoke to my soul from the inside out and I knew from that moment that there was a community that was for me and I also felt so compelled to contribute in that way because it made such a difference for me, my mental health, my emotional health, just inspo like all around and then decided to start a podcast called once upon a gene, where I Obviously figure it out for myself along the way, but where I share stories from families and I also share a bunch of different kinds of interviews with doctors and clinicians and all things rare disease, of all the things that pertain to our life as an educational resource but also as like a giant lighthouse of connection for families like ours.

Kara: 10:07

So Thank you a little bit for that and let's see what do we want to talk about. Actually, you mentioned it a little bit. I was curious about your relationship with disability prior to becoming a mom to Ford, because I know I shared a couple weeks ago a little bit more deeply on my own journey. I was very, very distant from the community and Really didn't have any point of reference. What was your before and after like?

Effie: 10:34

Yeah, same right. I think, if anything, the only stuff that I saw in, you know, print or media was autism and Down syndrome. And, oddly enough, though, in my real life, in my adult life, my next door neighbor that I ended up having, right when I met my husband, had a daughter with something called Pfeiffer's syndrome, which is an ultra rare disorder. But I didn't realize it was an ultra rare disorder, like I wasn't using that language at that time. But I did meet Mallory and I did become beautiful friends with her mom before and especially after Ford was born. But even then it was normal, like she was my neighbor, she was my friend and it was like what's up, mallory? But I didn't dig, I didn't know that she needed help, I didn't realize that she was completely stressed out and sleep deprived and alone. You know, like I didn't see her.

Kara: 11:26

Yeah, yeah, and I think, tell me if you agree with this. I think I can have so much compassion for people that we re in our shoes before that really don't understand. I think we have to give people a little grace and compassion, because until you're in these shoes, like no, you can't. And so I take it as it's our job to tell them and teach them and educate them. And, yes, it would be awesome if some of them took a little bit more initiative, and I don't expect that, because I think everyone's out there just being human the best they can.

Effie: 11:54

Yeah, and I think that you know you really are pleasantly surprised by some of the people who do show up in that way and who do try to figure out how to help and are curious to like make sure that you know they are a person there for you. But again, yeah, like unfortunately, we do just kind of have to say what we need and say what we want sometimes. Especially if those are the kinds of people that we have around us, and I think that it's okay for us to kind of figure that out and not be so angry about it.

Kara: 12:25

Yeah, well, I thought that was like a good segue to talk about the spark that I saw on Instagram that I was like, oh, this is what Effie and I have to talk about, because, again, we have a little bit shared experience of how we observed Instagram in 2023, and I'm calling this conversation going against the Instagram grain. It was a story that you shared and you just kind of shared, like, watching Instagram in 2023 was really hard for you. I'd love for you to share a little bit more about what you mean by that. What is it that kind of started to grab your attention and maybe give you some cause for concern.

Effie: 13:02

Yeah, first, I want to say I love social media. I think it is one of the closest Companions and like bridges that families like us can have to connection, and it has served that purpose for me. But and I don't know what it was about 2023. I don't know what it was, but it was really hard to watch. Like you said, I've started using this term that I call toxic validation, and I think social media really amplifies negative experiences because posts about our challenges and our hardships,

Effie: 13:34

they garner so much more attention and sympathy and, especially, engagement, and I think this cycle can really create an environment where parents feel compelled to focus on the difficulties of raising our kids who have disabilities, rather than celebrating successes or sharing those positive moments, or celebrating those positive moments or even laughing about it.

Effie: 13:55

I think that this constant exposure To how hard it is and it's hard. I'm not saying that it's not, I just think that it can really reinforce this narrative of how much we struggle and how much we suffer.

Effie: 14:08

I think that it potentially makes it harder for parents to recognize and appreciate the joy and the fulfillment that we actually also experience, and I feel like some creators purposely host this stuff Because of the engagement, not necessarily because they think it's healthy, and that stuff bothers me because I'm very protective of families For many reasons, but especially those families who are so vulnerable in the beginning and they're just getting exposed to this, and voices on social media can be very loud. and they'll be putting your algorithm and then you see people that you see in other parts of social media agreeing with it, and so you just go oh, I have to do that, this is the way, and I think that it's really doing a disservice to our mental health, to our physical health, to our friendships, to a lot of things.

Effie: 14:58

And it was really difficult for me to watch in 2023, because it seemed like it caught like wildfire and goodness was being lost, and it was being called toxic. which is another term that is just annoying when it's only that way, righ., like it's only toxic positivity if you are celebrating the joys, and I just think that it's all very irrational and people aren't making up their own minds anymore and they're not thinking through this and they're just clicking the like button and sharing it and there it goes.

Kara: 15:35

Yeah, it's almost like everyone's looking for you know where we started, you and I just sharing like, yeah, we didn't know this world, we weren't in this world, we're all figuring it out, especially in our role in motherhood. So it's like everyone's looking around be like, how are we supposed to think and feel about this? And rather than really Integrating it to your life, your values, who you are, who your child is, which is all very different for so many of us, it's almost like we're looking to have others tell us who we are, how we should think and how we should belong, like how that looks. And I think that's where you know I wanted to talk about this because I see Solidification of some beliefs that I don't think are helpful. one of the ones I think that I saw a lot last year, just over and over again, is essentially a collective eye roll with the conversation of self-care.

Effie: 16:26

Literally eye rolls. Do you know how many reels I saw from very influential advocates of literally rolling their eyes over that? Yeah, and what you're doing is you're almost making fun of other parents who have worked their butts off to get over certain humps and who have worked their butts off on changing their mindset and have worked their butts off on getting people out of their life who don't deserve to be there. Like there is a lot of work that it takes for one to get to the point where they realize what they need to do to take care of their own body, mind and spirit, and that is invalidating. So how can you speak on one thing and then completely be a hypocrite on the same side of it? Just don't do it, just be kind. There's a point where you can laugh about things, sure, and I am like the number one proponent of finding humor in this journey, but you're shaming someone. Like, pay attention to what you're doing because you're shaming someone.

Kara: 17:21

And also you're voicing the solidification is we don't have time. Don't tell us that we should do that. No, the answer that they're saying is no, we're not gonna do it and it's impossible. Okay, and when you are enforcing?

Effie: 17:34

yeah, and when you're enforcing that sort of dependency mindset on, like you know, everything is awful and you're in this hole. That's what's going to stick, because it's easier. It's easier, that's just a fact. It's easier to not do the work, it's easier to just. I mean, I don't know if easier is necessarily the word, but you're a little stuck and it's hard to get unstuck..

Kara: 18:01

I'm so glad that we're bringing light to this conversation because one I can tell the passion you have behind it and I share that, because it's really ultimately heartbreaking, because you and I both know this is hard and we do get stuck. Again. I only see your journey from Instagram. We don't talk on the reg but even with as hard as we are trying and putting an effort into self-care, this stuff is hard only because, like, we have another surgery coming up on the 20th. Like, so that's like a week from this recording and I'm noticing all those natural responses that my body has because we have a lot of data points for how hard and scary surgery is right. And so if I were to tell myself it's impossible, I just have to suffer through this. Like, it'd be very predictable that I would do that and it just breaks my heart to see people giving up and buying into the narrative that is impossible because our lives are so hard.

Effie: 18:55

Yeah, and that reminds me of the other like there's so many things that I could just go off on my soapbox about, but that's another word, right. You said I don't know if you said it actually, but that's kind of going to that whole trauma narrative, right, and that you need to just sink into your trauma, and your trauma is your identity and everything is trauma.

Kara: 19:14

I wanna hear more about this, because I feel like I didn't catch on to the trauma. What is it that you see people doing with trauma? That is kind of causing you to second guess.

Effie: 19:24

I just feel like it's becoming an identity and again I think it can be that thing that's stuck right, whereas trauma, like you said, let's notice it in our bodies, let's notice what's happening in our brains when we're feeling activated like that. Cause that's the only thing that's gonna help us maybe change one little thing. That's gonna make us feel enormously better, because one little thing, even slightly better, is enormously better for us. That's a fact. When we can feel even a little relief, it is 10 times the relief it felt like before we knew what chronic stress was okay. And I think that when we're telling ourselves that this is just the way it is, we're traumatized. Everything is a trigger. I think that your body hears that, your brain hears that and it's gonna make you sluggish and it's gonna make you stuck. And I think what we need to do is realize those things that activate us and think about other ways that we can either reframe it or redo it or make a tiny goal or make a tiny habit, but really trying to think okay, and then what?

Effie: 20:26

And not just like sinking into it and having it just be like our cozy little buddy, because I think we learn a lot from our trauma. I think that our trauma can really empower us. I think that it can turn us into really, really valiant people and kind people, and I don't necessarily think that we have to only hang on to all the icky stuff that trauma really does do too, because that is also true. I think there's just a balanced approach to all of this, and that's what I'm not seeing from popular narratives on Instagram.

Kara: 20:57

Okay, thank you for clarifying that, because as listeners come to this episode, they will have just either listen to or you can go back and listen to them a whole series on trauma, and what I hear you saying is that yes, I mean, we're all traumatized, there's no question, and it's not our friendly little buddy to like say we're traumatized and now we just get to stay here suffering. The question that you ask is like okay, now what? And I think that's the difference. I think you're seeing people not ask the question now what. You're seeing people just kind of stay there and claim the identity of I'm a traumatized mom, but I guess you have to stay in there and it's not an empowering place to come from.

Effie: 21:39

Totally. You know that infographic that's been around since I've been Ford's mom of that whole, where your fellow parents are in the whole, but don't worry, there's a parent up here who's gonna help you get out. I used to love that graphic until this 2023, when I saw that it wasn't the parents necessarily helping them out of the hole anymore. What they were doing was nodding along and being like, yeah, we totally live in that hole, it sucks right, like, oh, it's so hard and awful. Instead, that is what that hole became, I feel like on social media in 2023, rather than doing what it says and helping you out. And I don't think constant validation and constant trauma and constant focus on the negative aspects of our life is helping you out of that hole. I just do not believe that.

Kara: 22:26

Well, I think that.

Kara: 22:27

So you mentioned that balance is missing, the thing that I started off the series with, because I brought on a licensed clinical social worker who is amazing and she was so wonderful at kind of walking through what trauma is and we really had some wonderful conversations.

Kara: 22:41

But what we started it off with is the hope of trauma, that many, many other mental health conditions or disorders there's not great treatments for them, like really very sad. And it is the exact opposite for trauma. Th at there is hope in trauma, that, yes, trauma changes us, it changes our brains, it changes the way that we look at the world and the way that we look at ourselves, and that's not necessarily always bad, but, to your point, it takes some hard work, it takes some willingness to really kind of address it and not just to stay where you're at. So is there anything else that we haven't talked about in terms of, if you look at the overall themes that you see swirling out there on the old Gram that have kind of hit you in a way that you're like I don't know about this one.

Effie: 23:25

A language you know. I think language and shaming other parents has become normal. I'll use the term special needs, right? Clearly you use the term special needs. Clearly, lots of people use the term special needs and that is their decision to use that term. There's a lot of reasons one might use that term and I also just think that back to like the most basics of anything, when you're ever having a thought and that you want to put out into the world, as long as you're not being a jerk, you get to decide for yourself and for your family why that is.

Effie: 24:01

And I don't think that fellow parents or other types of people out on the internet get to tell you that you are trash because you use a certain term. I think that's wrong. I think that's really closed-minded. I think that it's a softer landing for some people to use. It might be more comfortable when the person is one year old, like. I just don't think that we need to shame parents. We have bigger fish to fry. I don't think that term is harming anyone and I'm putting that in big quotes because that word is used a lot. Yeah, I just don't think there's anything wrong with that. I think that if you don't identify as a special needs family, that's great. Identify how you want to identify, but don't shame the other person for identifying that way. I think that there's a lot more room for respect here and for acknowledging how and where people are, and I think that there just needs to be a lot more kindness and a lot less aggression toward whatever narrative one is being steered toward.

Kara: 25:06

This is another episode that was on my mind. I just released, early February, a conversation about terms, term confusion, and I had been kind of watching it for a long time and talking to a lot of people and, honestly, like for me, when I first saw some of this on the internet, I was like, oh, I am doing it wrong, people hate me. Now. It was like really an experience, especially because of yes, my podcast is called the special needs mom podcast. Clearly I'm using those words that are now decided bad among some communities, and so I really had to grapple with it and really kind of question my own intentions, question my relationships and really, of course, like question all the things that you're talking about it. Ultimately, I think this sense is that this is my opinion, victim of the cancel culture. Oh, you're doing it wrong, you're offensive, you're out.

Kara: 26:00

One of my past guests was recommending one of her favorites somebody out there in the world to be a guest on the podcast, and this particular guest was a no because of the name of the podcast. and I thought, well, that's interesting. and I see certain types, particular diagnosis groups, that kind of have their alignment Like this is where we land here and this is where we land over here, and I think it's gotten to be some pretty bloody waters because soon there's almost going to be, like this, dividedness, and I don't think that that helps our communities in any way. And to me it's kind of heartbreaking because I think the heart behind it and I'd love to actually get your take on this I think the heart behind it is the world hasn't been very kind to people that are disabled or have special needs or differently abled or whatever medically complex or whatever word we're using. So instead of saying no, actually the way that the world's treating these people and the parents of these people is the problem, we're saying the words are the problem. You got to change the words. But I think it goes deeper than that. What are your thoughts?

Effie: 27:09

First, I want to go back to some things you said. Bloody waters yes, because there are actually some sharks in it, too, who are just going after people for the sake of going after people. And two, when that whole swath happened and I think we know it just because we're heavily involved in social media and we only probably follow this genre. yeah, like there's not celebrities on my Instagram or anything. I thought about you and I felt like I hope she doesn't just change her podcast name because of this. unless she wants to do that, and I think that, again, there's just so many direct things like that that I think are inappropriate. and what this makes me think of is the importance of having the parent, the guardian, the caregiver voice at this table, and so I'll just continue with my unpopular opinion. But I have a seat at this table. My child is never going to talk and my child has intellectual disability. I have to bathe him, I have to brush his teeth. I have to spend 20 minutes getting his arms in a shirt. I'm going to be taking care of him until the day I die. I have a seat at this table.

Effie: 28:16

Nobody speaks for my family and you don't have the narrative of the entire community because you're a disabled adult who can talk. I realize that that might sound very harsh to hear, because nobody's used to hearing harsh thoughts or opinions and I wouldn't even use the word harsh, but I know that's how it's going to feel to some listening. But there is room for collaboration here. We also have lived experience in this.

Effie: 28:43

Am I a disabled person? No, okay, but I take care of one every single minute of the day and I will for the rest of my life. There is so much good that the parental, the caregiver perspective can bring to this, and I know most of us are out there championing disability and working to change laws and working to change the buildings in our communities and are helping to change our schools. I do all of those things in the name of disability. I am here with you as a team member, as a collaborator, and my opinion matters and the way that I am raising my child matters, and I am not invisible, and neither is he, and his experience isn't your experience.

Effie: 29:32

And I think that that's another thing that social media does. Right. It's like this is the way, and if you don't agree with the way, you're so backwards and evil and you're harming people. No, it's not. I'm a badass. I'm doing so much stuff you have no idea. You have no idea the things I've accomplished over the last seven years after having a kid like Ford, and it's because of him we have a seat at this table. and most of us are kicking butt at it and all we're doing is helping to be a voice. Are there maybe some crappy, problematic parents? Sure, of course there are. There's everything like that in every part of any group of people, but the ones I know are here making a difference and they're making a better life for the kids, like their kids. Period.

Kara: 30:19

Yeah Well, thank you for thinking of me in those bloody waters.

Kara: 30:23

I mean, the reason I feel pretty strongly about keeping the name is that when I ask people, hey, how'd you find the podcast?

Kara: 30:31

The most common answer is as I was up late at night, I felt so desperately alone and hopeless and I put special needs in the podcast thing and you came up, and so, until there's a different way of connecting this community, that's going to be the term that we use in our family and I think I'll just share it because I think it really kind of solidifying the point that you're making is that everybody has a different experience. and so my son is very capable of expressing his desired words and what he thinks about the name of the podcast and the words we use around disability and special needs in our family, and he loves it. He said my mom has a podcast. He said they say what is it? It's called the special needs mom podcast. Like he is so proud, which actually the first time he said I was like oh, that's, that's kind of funny. I never thought about it, like you know, as he grew over the years, but he loves it and he feels so proud and so it's pretty great.

Effie: 31:31

I love that. I love that you asked your group and I didn't used to use that term just because the first term I learned was disability. I just started hashtagging my stuff, like a year ago, with the word special needs because I realized the people that only knew that term were not finding my content because I didn't use their language.

Kara: 31:51

Yeah, we start somewhere right and like, and if I look at my own evolution, I didn't use the word disabled because, also like our origin stories a little different, we became disabled very suddenly when my son was two and so I don't know like we had a cancer entry way.

Kara: 32:07

So, like to me, I didn't associate disability with cancer. My language has very much evolved over our journey, as everybody on this while road has definitely evolved. I want to go back to something that you said that kind of relates to something else that you wrote about in this particular article that you had shared a couple weeks ago, and you really kind of owned the kick ass human that you are, the kick ass advocate and mother, and I think another narrative that you and I would both agree that we see out there is the push back against being called strong or inspirational, or kind of acknowledging the level at which we're working as mothers and kind of pushing it back and saying no, no, no, like I'm no different than you are. You're nodding just for the people out there you know not getting to see you. So you're seeing this along with me and I guess the question I would ask you to share your opinions on is what do you feel like kind of holding on to this might cause us to miss, as moms living this life.

Effie: 33:14

Man, I just I feel like again, it's that corner that they all want you to go to right, that dark corner where everything is awful and we get to just put our stake in it that it's harder over here. It's harder over here. Okay, that is a fact. I don't think that I need to plant my flag there every single day. I don't need the validation of knowing that other people know how hard it is for me. If they don't know that, I really just probably don't talk to them or communicate with them. They're probably not helping me in any way.

Effie: 33:49

And I also find it so exhausting and what I've learned over the years is how precious my level of mental energy is, aside from all the physical stuff we're doing. But what I have space for in my heart and in my brain has become sacred. And when I'm putting myself in that dark corner and making all of that stuff fill me up, I don't have time for one, shedding it, because you were choked by all that stuff. But I can't look at the other side. I can't feel welcome on the other side.

Effie: 34:25

I feel like I'm betraying this dark corner if I look at the other side, like it's really consuming and it's a very strange place to live in, and I think that it's blocking people from being happy, because there's a lot of happy here. I think it's blocking from people making themselves healthy, because how could they? I think that it's really limiting us. I think that we have a really important job to do, of course, as parents, as spouses, as advocates, and I think that our role is so powerful that I think that we have a capacity for change that not very many people get the opportunity to embrace. and I think that when we stay there and we let it consume us, even if it's only consuming us to hear that's too high, that's too much. and I just think that we're missing out and we're wasting a lot of time, because energy is really, really, really important and it's really hard to get.

Kara: 35:27

I just want everyone to be more aware of that and like really check in with yourself, because you can find another way, I promise you can find another way, giving an actual, tangible example, I think in this article that you wrote so beautifully I think you talked about, because there's a lot of pushback against people saying you're so strong, and in this article you really said, yeah, I am Thank you, which I really appreciated. That take on it, because I think if we are constantly going to be upset if people relate to us as strong, because, yes, you're right, we had to step into the arena to be strong, we didn't have a choice, but yet we also did have a choic. y . if we're going to be real honest about it, and we did step into the arena and we are doing it, and so I see a value in actually really owning yeah, we're strong and not making people wrong for observing that. Actually, it's funny in the last couple of weeks there was two different instances. I had this gentleman that drives through the school parking lot so school pick up together and he saw me loading in the wheelchair, because ours is what's called folding, so I got to heft that thing into the back and it's not my favorite thing, I'm going to be honest about that. So I was doing that and he was stuck in traffic, so he was like sitting right there and he's like I just got to say, and he just goes on and on about how I see you every day. You're just so strong, you're so manly, go on and on and like, honestly, I hope I start crying.

Kara: 36:57

It was one of those days where I really like hearing that I was like thank you, because, yeah, this is hard, and thank you, it just felt good. He wasn't pitying me Like. He was just really saying like great job, mom. It felt so good. And then, you know, recently as last week, somebody that was on an IEP meeting messaged me afterwards and said I just want to let you know you're so strong, you're so inspirational. I have so much respect for you. And I feel like the narrative that you see on Instagram is like oh, she said all the bad words Well, did bring me to tears, because it was a hard day. We scheduled a surgery and had an IEP in the same day. That was not was too much. And to have someone say good job to help me reflect on on yeah, I'm doing a good job, thank you, it helped me to kind of pause and reflect. So I think it's important to allow that in, rather than rejecting it and just being upset about the way that the world might relate to us as these moms.

Effie: 37:54

Yeah, I mean it is. It's a gesture of kindness and it reflects their perception of your strength, of your resilience, and that's OK. You know, we don't need every single person to get the play by play and have a full grasp on the relentless, chronic challenges that we deal with. That's fine. That would be exhausting in its own. To make sure everyone understands, they said good job, you should take it. You should take it for yourself, in the small moments at home, like if you conquered the laundry pile. Guess what? You're strong. Ok, that's freaking hard. it is really hard.

Kara: 38:35

Every day I'm like I'm going to do it, I got it, I got it today, I can do it. That's really hard.

Effie: 38:40

You did that on top of everything that you do. Why don't you take a little credit? Take a little credit because guess what? You're not strong because you had to be OK. You're strong because you chose to be and because you are.

Effie: 38:52

I know lots of parents who aren't strong. I know lots of people who aren't doing this life the way that they could do it. I know lots of people who aren't living this life who could never do it OK, like some people aren't. Some people don't want to be. Some people don't choose to be. Who cares? Who cares about the little nitpickiness of it? Like you are awesome. You're doing hard stuff every day. You are strong. I think that if you take ownership of that part of the incredible job that you're doing, with the enormous weight on your shoulders that it should make you like pat yourself on the back a little. It should give you some pep in your step. Maybe it gives you a little more energy to do something cooler the next day. I think if we reframe it for ourselves and stop using other people's opinions and validations and seeking you know this something I don't know what it is exactly and really just taking care of our insidess, that we would get rid of a lot of noise.

Kara: 39:53

Yeah, and I think the thing I hear you saying is open up the space for happiness for you, even in all of this hard. And, yes, some pep in our step and yeah, find self-validation.

Effie: 40:05

Like that's all you need it from.

Kara: 40:07

I mean in the work I do in coaching.

Effie: 40:19

Find your friends that you can text when we don't feel like that at all, Like that's important too. Everything is awful and I hate everyone and everything. And they'll be like, yeah, girl, that's cool, Do have those friends, you need those friends too.

Kara: 40:32

Yes, right, because we're not talking about you and I are not talking about. Let's just all have good attitudes all the time guys.

Effie: 40:39

Yeah, no, absolutely not.

Kara: 40:40

No, no, no, we're talking about balance.

Effie: 40:42

We're allowed to have both.

Kara: 40:43

Yes, it's both sides of that. Transitioning a little bit to talk about something, a new initiative that you started at the beginning of the year that you're calling Once Upon a Gene Therapy, and I saw it and I was like, yeah, I love this. I love that you are inspiring others to shift this narrative and I think this initiative is a way of doing that. So why don't you share a little bit about that and your vision behind it?

Effie: 41:07

Thank you for asking about it. I've been meaning to continue to post about it lately but I've been busy. Okay, so O nce Upon A. Gene Therapy. one, It's a pun, and you know. obviously I like that, but what I know to be true is that walking has been the most beneficial type of therapy that I have ever done. I've done most of my healing through walking in so many different ways, so it's just something that I've always done for myself since, especially having Ford. And another thing like we've talked about, right, like parents are always talking about how they don't have time, they don't have the ability, they don't have the opportunity, all of this stuff that gets in the way, that ends up being true because it's how it is, because we make it that way, because we're not finding it right. I guess I'm not really explaining this very well. So what I wanted to do, what my mission was, was to empower fellow caregivers to remember who they are and to know how powerful just movement can be in general, if you're walking inside, if you're walking outside, if you're doing yoga, if you're doing stretching. This was particularly about walking and finding that time for yourself, completely for you, but then also to find it in a community.

Effie: 42:22

All of us are friends online. Every almost every friend I have is on the internet. Sometimes I just want to see a person. I don't even need to talk to you, but it would be nice to see a person. It would be nice to know what other families are like me in my area and maybe go on a walk with them. And I've been doing that. I've been doing it every week. I've been meeting up with either a new person or some of the same cpeople ome along. Sometimes we share our stories of parenting, sometimes we are just laughing about Netflix. There's nothing like being in person and I think it's really powerful.

Effie: 42:55

But what this has been doing? There's a Facebook group for it, Once Upon A Gene Therapy Facebook group and it's so cool, it's so gorgeous. like everyone is posting every day on these beautiful walks that they went on or a new parent that they met, and almost every single person is saying I can't believe I'm finding time to walk. I haven't walked in eight years, nine years, 10 years, because I didn't think I could. But here I am, finding a spot every single day where I get to just take it for me and I go on a walk and all of you are making me feel like that's okay and it's awesome and I have so much more energy and I feel so much better about myself.

Effie: 43:30

And I can't believe I found that hidden door, because now it's like how has that door not been hitting me in the face this whole time? And I think that when you step out and you make something happen and then maybe you turn it into a habit, you can't go back. You literally cannot go back. Your cells turn over when you realize that you just broke through something. And I think that the simplest thing of this, of walking, of a walking club, is transformational. I think that it is so huge for caregivers like us to recognize so many important things just by taking a walk.

Kara: 44:08

Well, it's twofold. It's, yes, it's the walking, because there's all the science and, of course, your personal experience, but there's like I mean, we can go on and on. We could have a whole episode on walking, for sure, totally, but save that for another day. But I also hear what's really really powerful about the initiative that you're leading is really shifting the question from it's really more of a statement to a question. It's shifting from I can't to how can I and I think that's actually I think about this the you say this Facebook group is just full of beautiful pictures. I'm like, oh yeah, I want that in my feed as you were sharing. I was thinking about, well, what if all of us you know in the disability community you get on Instagram or Facebook or wherever we like to go and see a bunch of moms smiling out and walking?

Effie: 44:55

What does that tell you?

Kara: 44:56

That tells you, wow, she's doing it. Maybe I can too. And just to be clear, let's be clear that there are seasons and sometimes maybe it's not the time for you to go walk, but those seasons don't last forever and also, it's not a reason to say I can't. Just to be clear, there's room for compassion and for pushing through those barriers. So we have room for it all the obligatory disclaimer.

Effie: 45:24

Yes, they can all be true, but yeah, I guess like part of that whole thing I saw on social media just made me want to just like grab a hold and help make a special place where it's not dark and cloudy, and when it's dark and cloudy that's even a better time to walk sometimes. You know, like I just think that there is so much room to explore so many parts of ourselves here and it's really important to identify when you're stuck, even just to identify it.

Kara: 45:57

And back to community. One of the huge parts of recovering from trauma is community.

Kara: 46:05

And so for people that have missed the episodes, please go back and listen to all the episodes on trauma, because it's important that we understand trauma also so that we know how to heal from trauma, and so I have it all in those episodes. But community is foundational, not just for trauma, but significant for grief and for processing grief, and we know just like trauma, this journey is full of grief as well. So, Effie, I just love your energy and I feel like we would really make a lot of people mad if we were.

Effie: 46:40

I'm pretty sure I'm going to make people mad in this episode, but what I want you to take from it.

Effie: 46:47

This is such a personal experience and everybody gets to have their personal experience and what we can't do is shame people for that. But what we also can't do is encourage stuckness. We can't encourage it. It's toxic for our community. It is not helping anyone get anywhere. I think we have to identify that in ourselves If that's where we're going, and figure out what else we can do, what other steps we can take. It can be the simplest thing, like breathing in the morning.

Kara: 47:21

you know walking, yeah, it actually and I think you said that early in the episode like, even if we move the needle, the smallest little nudge in filling our tanks in, whatever it is that we need or we're getting that moment that matters.

Effie: 47:36

It matters so much.

Kara: 47:38

I think people think it's this all or nothing thing. Well, I know this because I'm coaching people and we're moving from all or nothing to these small baby steps, which are not baby. So thank you again for coming on this episode and for breaching these conversations, with me being my partner in crime here. Are there any last comments that you want to make as we close out this episode?

Effie: 48:01

Yes, I want you to find your people and I want you to recognize how strong you are, because we are the strongest people I've ever met.

Kara: 48:09

Well said, all right, we'll see you all in the next episode.