[00:00.000 --> 00:29.800] I'm Effie Parks. Welcome to Once Upon A Gene, a podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a little better.
[00:29.800 --> 00:43.800] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get.
[00:43.800 --> 00:56.800] Once Upon A Gene is proud to be part of Bloodstream Media, living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.
[00:56.800 --> 01:08.800] This is why Bloodstream Media produces podcast blogs and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more.
[01:08.800 --> 01:16.800] Hello friends, and welcome to the show Happy New Year. I'm not going to make this a super long episode today. I am so far behind.
[01:16.800 --> 01:24.800] Like, I know many of you are since school being out. My husband was also home, which I thought was going to be helpful, but was absolutely the opposite.
[01:24.800 --> 01:32.800] So I am kind of trying to dig out like many of you. So a few months ago, I had a really hard part of the year this year.
[01:32.800 --> 01:39.800] I mean, the second part of this year was really difficult for me. Ford's growing bigger and stronger, and his behaviors have changed significantly.
[01:39.800 --> 01:47.800] And there was a time, and oh my gosh, Seattle, right? Like, if you've never been here, it is like dark all day long for a certain part of the year.
[01:47.800 --> 01:54.800] It doesn't necessarily mean that it's raining and pouring, but it is actually dark. Like 12 noon. I have to have the lights on in my house.
[01:54.800 --> 02:00.800] That affects me a lot. I am a sunshine girl. I really need that. I think that definitely contributed to it.
[02:00.800 --> 02:15.800] But what I'm saying is I got into that place, that icky, icky place that was deep enough that I recognized was similar to that way deeper and a cure in a cure place after Ford was born and sick and diagnosed before I started this podcast.
[02:15.800 --> 02:24.800] And I'm thankful that I recognized it. It definitely probably took me a couple weeks, but I was like, whoa, whoa, whoa, Effie caught you in the mirror there.
[02:24.800 --> 02:37.800] And I don't like this. I don't like that. And I know that so many of us are there so often, right? And it can be really difficult to dig your way out to not stay there for too long.
[02:37.800 --> 02:51.800] I don't think social media necessarily can always be a helper in that matter. You know, there's lots of amazing content that is always there to lift you up and pull you out and ignite you and empower you and connect with you.
[02:51.800 --> 03:08.800] There's also content that is shaming you and is making you feel less than and is divisive and is honestly toxically validating and making you feel like, yes, everything is awful and you should always talk about it and everyone should know that it's awful.
[03:08.800 --> 03:20.800] Okay, like there's a place for that, but there's also a point where it goes too far. And it's hard to recognize that. And I just want everyone to be mindful of what they're consuming online because there are many voices.
[03:20.800 --> 03:35.800] And I'm so glad for that. But just be careful of what you're consuming because I worry about these vulnerable families, especially the ones in the beginning who are finding that content and then kind of feeling like that's part of their identity.
[03:36.800 --> 03:55.800] And that also brings me to something that I want everyone to sort of think about for 2024. And it's the concept of non toxic positivity. Okay, yes, there is such a thing as you having something terrible going on and feeling bad and talking about it or whatever.
[03:55.800 --> 04:15.800] And then the other person, of course, acknowledging your reality and having empathetic support for you, but also maybe, you know, encouraging you and giving you constructive feedback and, you know, just having an openness to insight from others.
[04:15.800 --> 04:29.800] I just think that there's a balanced and a realistic sense of hope and optimism among parents of medically complex kids. And it acknowledges the challenges and the hardships is kind of what I'm getting at.
[04:29.800 --> 04:39.800] I think that this concept of non toxic positivity promotes a supportive community atmosphere where both our struggles and our successes are equally validated.
[04:39.800 --> 04:57.800] I don't really necessarily have an exact definition for it yet. I'm still thinking through it, but I would really like it if everyone would think about this, this trend that has been kind of going on with tropes and sayings like that's toxic positivity because not all positivity is toxic.
[04:57.800 --> 05:09.800] And quite frankly, some of us need some positivity brought back to us because sometimes we're stuck and we need that kind of reality check. And that's just a fact.
[05:09.800 --> 05:15.800] Obviously, you don't need someone to be toxic positivity to you and make you feel like what you're going through doesn't matter.
[05:15.800 --> 05:22.800] I think that who you surround yourself with and who you decide to reach out to will help guide you in how you feel when you're getting that.
[05:22.800 --> 05:32.800] But maybe just think about it, you know, kind of marinate on the idea that maybe there is room for more positivity rather than just like, yeah, totally that sucks.
[05:32.800 --> 05:43.800] I know, yes, yes, you should totally go on and on about how that sucks. Okay, because there also has to be an ending to that suck a little bit, right, you have to learn something from that suck.
[05:43.800 --> 05:47.800] And I hope that we can all do that this year because it's exhausting.
[05:47.800 --> 06:01.800] It's exhausting to feel stuck and it not only makes you tired and fatigued and bitter and angry, but it ages you and it makes you unhealthy in so many physical, emotional and mental ways.
[06:01.800 --> 06:02.800] It isolates you.
[06:02.800 --> 06:09.800] It disconnects you from friends and potential friends and community and it just really stunts things in lots of ways.
[06:09.800 --> 06:22.800] And I think that as caregivers, as caregivers for life, which most of us are, we have to be so extra protective and extra mindful of how we are moving through this.
[06:22.800 --> 06:25.800] Okay, so that's what I'm going to reflect on.
[06:25.800 --> 06:31.800] I hope maybe some of you can go there too because I know a lot of you need that breath of difference and maybe fresh air.
[06:31.800 --> 06:38.800] Speaking of fresh air, since having Ford, obviously, walking has been honestly the best therapy I've ever had.
[06:38.800 --> 06:42.800] It's been the most impactful type of therapy I've ever had.
[06:42.800 --> 06:52.800] And I remember starting to do it immediately after I had Ford when Casey went back to work and I was just alone with this sick baby and all of his feeding supplies and like bleh.
[06:52.800 --> 06:57.800] And I would just go walking. I would put him in the stroller because he couldn't even be in a baby carrier.
[06:57.800 --> 07:00.800] I couldn't even carry my baby because legs wouldn't open up to split apart.
[07:00.800 --> 07:03.800] And I would just walk and walk and walk and walk and walk.
[07:03.800 --> 07:07.800] And I would cry and walk, like absolutely cry and walk for hours and hours and hours.
[07:07.800 --> 07:09.800] And I just kept walking because it was so dark here.
[07:09.800 --> 07:10.800] I was stuck in my condo.
[07:10.800 --> 07:26.800] And what I found was the rhythm of walking and just being out and letting my emotions move through me when I was doing that and not being cooped up in the house and not feeling, you know, 105 billion percent isolated like I was, but maybe 100.
[07:26.800 --> 07:33.800] A hundred percent isolated because I was outside and I was breathing and I was looking at the trees and I was walking, right?
[07:33.800 --> 07:35.800] I just found so much healing in that.
[07:35.800 --> 07:40.800] And it was something that literally saved me and I know it to be true.
[07:40.800 --> 07:42.800] So I've always continued to walk.
[07:42.800 --> 07:45.800] Ford is now way too big for me to just walk in like we used to.
[07:45.800 --> 07:47.800] And he's also way too like directive.
[07:47.800 --> 07:53.800] So I don't get to go on those special walks with Ford so much anymore, but I do do it myself.
[07:53.800 --> 07:56.800] Whether that's on my treadmill or I sneak out of the house.
[07:56.800 --> 07:58.800] Sometimes I literally sneak out.
[07:58.800 --> 08:04.800] Sometimes Casey will get home and I am just done and I leave and I text and I went on a walk later boo.
[08:04.800 --> 08:10.800] Like I fit it in whenever I can and however I can because it is such a part of my mental health now.
[08:10.800 --> 08:12.800] And it also makes me happy.
[08:12.800 --> 08:14.800] Like I feel so rejuvenated when I do it.
[08:14.800 --> 08:16.800] I feel so proud of myself when I do it.
[08:16.800 --> 08:17.800] I feel fitter.
[08:17.800 --> 08:20.800] I feel like I have more clarity.
[08:21.800 --> 08:23.800] My stress level goes down.
[08:23.800 --> 08:25.800] I get a little more pep in my step.
[08:25.800 --> 08:28.800] Sometimes I'll see someone and it makes me happy.
[08:28.800 --> 08:30.800] Like everything about it is good.
[08:30.800 --> 08:34.800] You will never ever ever regret taking yourself on a walk.
[08:34.800 --> 08:35.800] Okay, so here's the deal.
[08:35.800 --> 08:40.800] I have been thinking about actually doing this for at least a year now.
[08:40.800 --> 08:41.800] And I'm always like, I'll get to it.
[08:41.800 --> 08:42.800] I'll get to it.
[08:42.800 --> 08:43.800] I'll get to it.
[08:43.800 --> 08:45.800] And finally I was like, you know what Effie, you're never going to start this.
[08:45.800 --> 08:47.800] You're never going to have the time to make it perfect.
[08:47.800 --> 08:51.800] One of your greatest gifts is that you're not a perfectionist.
[08:51.800 --> 08:56.800] So why don't you just bust open the lid and start it now and it will find its footing.
[08:56.800 --> 08:57.800] Pun intended.
[08:57.800 --> 09:04.800] Okay, so I have created a walking club and I'm calling it once upon a gene therapy because
[09:04.800 --> 09:10.800] it's a double pun and there is nothing better for your mental health in my opinion than
[09:10.800 --> 09:13.800] walking if you can or movement in general, right?
[09:13.800 --> 09:15.800] It doesn't have to necessarily be a walking club.
[09:15.800 --> 09:19.800] I'd like people to even just think about moving their body, stretching, lifting some
[09:19.800 --> 09:21.800] weights, whatever you're doing to move your body.
[09:21.800 --> 09:23.800] I know you can't all get outside.
[09:23.800 --> 09:24.800] I get that.
[09:24.800 --> 09:29.800] There's other things that you can do at home or outside in your driveway or whatever.
[09:29.800 --> 09:31.800] Walk the steps in your building.
[09:31.800 --> 09:35.800] This is about moving your body and moving it for your brain and for your heart and for your
[09:35.800 --> 09:37.800] soul and for your body and for you.
[09:37.800 --> 09:41.800] Literally actually taking the time and stop saying, oh, you don't understand.
[09:41.800 --> 09:42.800] I can't do it.
[09:42.800 --> 09:43.800] I this.
[09:43.800 --> 09:44.800] I get that.
[09:44.800 --> 09:45.800] I get it.
[09:45.800 --> 09:46.800] Okay.
[09:46.800 --> 09:48.800] But there are some times that you can.
[09:48.800 --> 09:53.960] So what I'm saying is let's all get out of our way and make some space for ourselves.
[09:53.960 --> 09:55.640] There is a place for us.
[09:55.640 --> 10:00.800] We are caregivers for life and we absolutely must prioritize ourselves, y'all.
[10:00.800 --> 10:01.800] Okay.
[10:01.800 --> 10:04.240] And also, I think that there's so much fun to be had here.
[10:04.240 --> 10:08.720] Like I have so many big ideas of how this can like transform and grow.
[10:08.720 --> 10:13.280] So here it is initially definitely, you know, follow me on Instagram, please, because everyone's
[10:13.280 --> 10:15.880] tagging their once upon a gene therapy walks.
[10:15.880 --> 10:17.240] Go watch the highlight reel.
[10:17.240 --> 10:22.400] There's some cool merch if you want to go along with it, but it's regular walking sessions.
[10:22.400 --> 10:23.400] Okay.
[10:23.400 --> 10:28.280] So me personally in the Seattle area, I am hosting an in person walk at least once a week
[10:28.280 --> 10:32.640] and I'm going to announce it, you know, like it's going to be Saturday or Sunday, whatever.
[10:32.640 --> 10:36.680] And I'm going to kind of pop around locations so new people can join in.
[10:36.680 --> 10:40.160] And I want to see some people in real life like I have so many friends online.
[10:40.160 --> 10:41.160] We all do, right?
[10:41.160 --> 10:43.240] Like all of our people are online because that's our life.
[10:43.240 --> 10:49.720] But what if, what if we actually found some people that are around us because there is
[10:49.720 --> 10:52.640] something to be said about actually being with a person in real life?
[10:52.640 --> 10:53.640] Okay.
[10:53.640 --> 10:56.920] So why don't we go and meet them if we can, even if it's just on a walk?
[10:56.920 --> 10:58.200] So it's regular walking sessions.
[10:58.200 --> 11:03.080] I'm asking you if you're a, you know, if you're pumped or if you think you can, like can
[11:03.080 --> 11:07.200] you post in your local neighborhood groups in your local disability groups and be like,
[11:07.200 --> 11:09.800] Hey, I'm, I'm doing this walking club.
[11:09.800 --> 11:11.640] I'd love to meet some new caregivers.
[11:11.640 --> 11:13.160] Like do you want to come out and walk with me?
[11:13.160 --> 11:17.640] I'm walking at this park at 10 o'clock on Saturday morning and you might be surprised
[11:17.640 --> 11:18.640] who shows up.
[11:18.640 --> 11:21.440] You might meet your new best friend for the rest of your life.
[11:21.440 --> 11:24.080] Magical things can happen and you don't even know, but you're going to be out and you're
[11:24.080 --> 11:26.920] going to be doing something and you're going to be doing something for yourself.
[11:26.920 --> 11:30.400] If you want to go walk by yourself, because that's what you need, great walk by yourself.
[11:30.400 --> 11:31.560] Take a pick and tag us.
[11:31.560 --> 11:36.800] I have this idea of like these regular walking sessions to where we actually convene with people
[11:36.800 --> 11:43.000] and then every day kind of holding each other accountable or uplifting everyone in what
[11:43.000 --> 11:47.080] they can accomplish or encouraging someone when they're feeling like they can't to go
[11:47.080 --> 11:52.040] and get some steps in or get some stretches in or whatever it is for you throughout the
[11:52.040 --> 11:53.040] week.
[11:53.040 --> 11:57.160] So there's one aspect of it, the community building aspect of it huge, right?
[11:57.160 --> 11:58.480] Like I love it so much.
[11:58.480 --> 12:02.560] You know, I'm obsessed with community and finding your people, the mental health aspects.
[12:02.560 --> 12:04.760] I mean, you could read over every post I've ever written on it.
[12:04.760 --> 12:09.240] I think you know the effects of walking and what it's going to do for you mind, body and soul.
[12:09.240 --> 12:13.800] So it's going to be something that you checked off a lit like you accomplished it even aside
[12:13.800 --> 12:17.840] from self care, like you get to check something off your list that you did for you that you
[12:17.840 --> 12:20.920] put in your oxygen tank and I think that's so important.
[12:20.920 --> 12:25.200] And it's these micro steps that have the big impact and it's healing ourselves on the inside
[12:25.200 --> 12:26.880] to heal ourselves on the outside.
[12:26.880 --> 12:28.880] Let's see the Facebook group come join it.
[12:28.880 --> 12:31.000] It's once Ponegene therapy walking group.
[12:31.000 --> 12:35.040] It's such a vibrant place already and I think I started it like five days ago.
[12:35.040 --> 12:37.040] It's beautiful and amazing.
[12:37.040 --> 12:38.120] Go join it.
[12:38.120 --> 12:42.240] Think about how you can contribute like this is not a me thing.
[12:42.240 --> 12:43.240] This is an us thing.
[12:43.240 --> 12:47.720] I don't want this to be like me making content and putting out podcasts and putting up Instagram
[12:47.720 --> 12:50.920] posts and having everyone just watch it and see it and maybe comment on it.
[12:50.920 --> 12:56.960] What this is going to do and my hope is actually make everyone else engage with each other and
[12:56.960 --> 13:01.720] have these conversations together and meet the people that I'm always talking about or that
[13:01.720 --> 13:04.880] so and so is always talking about and we're actually just all together.
[13:04.880 --> 13:11.440] I think it's so cool and I want to see that grow and I want to see people just find more
[13:11.440 --> 13:17.040] real life connection rather than just commenting on someone's social media post on Instagram.
[13:17.040 --> 13:22.360] I think we can go so much deeper and find such a richer kind of place here together.
[13:22.360 --> 13:25.200] So yeah, it's obviously not a total solid thing.
[13:25.200 --> 13:30.440] I do have some ideas for special events and maybe some special podcast episodes to come along
[13:30.440 --> 13:31.440] with it.
[13:31.440 --> 13:36.040] Starting like a Spotify playlist if you guys want to add some songs to it and we can listen
[13:36.040 --> 13:37.040] to that.
[13:37.040 --> 13:38.960] I have so many ideas.
[13:38.960 --> 13:43.720] Hopefully we can get Fitbit and Fabletics to sponsor us and you know hook us up with
[13:43.720 --> 13:47.280] some gear like there are no limits here okay like dream big.
[13:47.280 --> 13:52.120] I know this is the year of the happy healthy caregiver and I want that for all of us okay.
[13:52.120 --> 13:58.400] We have to start we have to start like focusing on that a little more because this is a long
[13:58.480 --> 13:59.480] haul okay.
[13:59.480 --> 14:06.560] It is a long haul and we can make jokes about it all we want and obviously you know too humor
[14:06.560 --> 14:11.120] is my happy place like I'm in a joke about this forever and I think that a sense of humor
[14:11.120 --> 14:15.480] is one of the most critical things that we can keep as a caregiver because again when
[14:15.480 --> 14:18.360] you lose your sense of humor you're stuck.
[14:18.360 --> 14:19.920] So I hope you can join.
[14:19.920 --> 14:21.080] I want to see you there.
[14:21.080 --> 14:26.880] I think it's going to be our rare mom transformative era and I am here for it and there are so
[14:26.880 --> 14:31.240] many amazing people already in that group and I've already seen some of my favorite
[14:31.240 --> 14:35.760] people ever whom I've like known online forever meet each other in person and it seriously
[14:35.760 --> 14:36.960] like makes me want to cry.
[14:36.960 --> 14:42.480] So please come join once upon a Jeremy therapy walking club movement club whatever it is
[14:42.480 --> 14:48.800] that you need know that it's okay to be stuck but you got to get unstuck babe and we'll we'll
[14:48.800 --> 14:53.600] help you and there's nothing toxic about that make sure that you watch what you consume.
[14:53.600 --> 14:57.160] Make sure you know how you feel after you're done reading people's posts.
[14:57.160 --> 15:02.600] Did it make you feel angry did it make you feel pouty did it make you feel happy like
[15:02.600 --> 15:07.320] maybe take take some reflection when you're done scrolling maybe stop scrolling I just
[15:07.320 --> 15:08.320] got a good feeling.
[15:08.320 --> 15:16.000] I got a good feeling about this and there's so much gorgeous real positivity here and you
[15:16.000 --> 15:20.920] know we can just lose all the cliches and live our own life okay the way that we need
[15:20.920 --> 15:26.040] to because nobody understands this but us and I don't like to be stuck and I don't
[15:26.040 --> 15:31.120] like to feel likey and I hope that you find that friend who will help pull you out something
[15:31.120 --> 15:35.840] I was complaining about for like probably a solid two months recently my friend Parvathy
[15:35.840 --> 15:40.520] shout out Parvathy literally like snapped I mean she didn't she kind of snapped at me
[15:40.520 --> 15:44.920] but she was like Effie you got to let this go I can't remember exactly what she said
[15:44.920 --> 15:51.720] but I was like holy crap she's so right I don't even like talking about this anymore
[15:51.720 --> 15:57.320] I'm so sick of talking about it thank you and I was immediately better like I swear I
[15:57.320 --> 16:02.400] was like I needed someone to just tell me that because I was getting in that weird spiral
[16:02.400 --> 16:06.880] and everything was awful and then she was just like hey remember who you are okay sometimes
[16:06.880 --> 16:13.200] we need that that's not toxic positivity go girl okay that's it happy new year super chill
[16:13.200 --> 16:18.600] random episode for you today I hope that you have a beautiful gorgeous day I hope that
[16:18.600 --> 16:24.360] you get out and move your body I hope that you join our group I hope that something feels
[16:24.360 --> 16:31.200] good today anyways thank you for listening to this show thanks for following along I appreciate
[16:31.200 --> 16:38.240] all of your support so so so much and my life is so much fuller because of you I hope you've
[16:38.240 --> 16:44.200] been enjoying this podcast if you like what you hear please share this show with your people
[16:44.200 --> 16:49.440] and please make sure to rate and review on iTunes or wherever you get your podcasts you
[16:49.440 --> 16:53.920] can also head over to Instagram Facebook and Twitter to connect with me and stay updated
[16:53.920 --> 16:58.880] on the show if you're interested in sharing your story or if you have anything you would
[16:58.880 --> 17:05.240] like to contribute please submit it to my website at EffieParks.com thank you so much for listening
[17:05.240 --> 17:09.880] to the show and for supporting me along the way I appreciate you all so much I don't know
[17:09.880 --> 17:13.640] what kind of day you're having but if you need a little pick me up for its got you
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