Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the 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.

[00:00:20] 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 lot less alone.

[00:00:31] 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. Once Upon A Gene is proud to be part of Bloodstream

[00:00:46] 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. This is why Bloodstream Media produces podcasts, blogs, and other forms of content

[00:01:01] for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more. Hello and welcome to the show. Thank you so much for tuning in. I really, really appreciate it. And I actually have a favor to ask you. If this show

[00:01:17] has meant something to you, if it's helped you, if it has empowered you, if it has lit your way or been a close companion, can you do me a favor? Can you share this show with someone? Share it in

[00:01:28] a text or an email or on your social media. Maybe mention what episode was your favorite or why you love this show. Leave a rating and review on Apple Podcasts. The word of mouth is the most

[00:01:41] amazing recommendation, and it really helps the show grow. The show grows because of all of you and the soul that runs through it. So I would really appreciate it to just help this amazing

[00:01:52] resource get into the ears of more people across the world. So thank you so much. At the end of July, I'm super excited to welcome the HNR&PH Family Foundation. They're coming here, yes,

[00:02:04] to Seattle. I'm so excited to meet new families and a couple old faces. So welcome, HNR&PH. I'm excited for you to come here, and it's just going to be gorgeous at the end of July. So you're in

[00:02:15] for a real treat in the Pacific Northwest. Today, oh my gosh, I'm so excited about today. We're kicking off a new series, and I'm going to be joined once a month by my dear friend Katie Lloyd,

[00:02:27] creator of A Very Rare Adventure, Rare Mama. I'm really excited. You've probably heard a few of her episodes on the show or follow her on social media. And the series is all about finding those small,

[00:02:37] hopeful moments, the glimmers that shine through even the darkest of times. So Katie and I, both like you, know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, bravery, and positivity. So in each of our episodes, we'll be

[00:02:55] sharing inspiring stories from our community. We're going to be talking about lessons that we continue to learn, and we're going to explore how these glimmers can light our way forward and hopefully

[00:03:06] encourage you to do the same. So whether you're a rare disease parent, a caregiver, or someone just looking for a dose of courage and hope, this episode series is for you. So I'm super excited

[00:03:17] about it. Let's chase those glimmers together and welcome my friend Katie. Hello everyone. As I mentioned in our intro, I'm talking with my girlfriend Katie Lloyd. You probably remember her from a few appearances on the show and the amazing, beautiful storyteller behind A Very Rare

[00:03:34] Adventure. Katie and I are going to start on a new series that we're calling Chasing the Glimmers. So say hi Katie. Welcome to the show. I'm so glad you're here with me. And this is also just kind of

[00:03:47] a secret excuse for me to get to just talk to you more in general as having you on as a little co-host. So I'm happy you're here. Hi everyone. I'm very honored to be here and so excited to be part

[00:03:57] of this new project that we've concocted together. So we're very early into this, okay? We haven't made a business plan. And when I say business plan, I mean Katie's definitely more of a planner,

[00:04:09] I'm more of fly by the seat of my pants kind of gal. But we haven't really directly made an outline of what we want to talk about. So we're kind of going to hash it out a little bit today. We

[00:04:19] definitely have some pillar ideas of what we're going to try to explain about just how we want to strengthen our communities and our connections and maybe inspire others to also take some sort

[00:04:29] of action physically, mentally or emotionally in sort of like a brighter spot. And I can already tell I'm yammering. Okay, Katie, when we started talking about this, maybe what were some of your

[00:04:40] thoughts slash what have you kind of wrapped your brain around what we want to do in this idea of chasing the glimmers and finding small moments, shining moments, hope, positivity, whatever it is?

[00:04:51] What is sort of your vision and why do you care about it? So I think many of your listeners, perhaps they are caregivers to family members who have rare diseases or perhaps they have a

[00:05:03] rare disease themselves. I think so many of us, especially in the early days, we find ourselves in this really dark place, in this deep trench where everything feels hopeless and scary and all

[00:05:16] the things. And what I notice as time goes on, and I think Effie you probably feel the same, is that I'm not really in that place anymore. You know, life has moved on a little bit for me and I see

[00:05:29] things differently. I feel differently to how I did four years ago. But some of the narratives I see online, particularly online, tend to stay in that deep dark place or things can be

[00:05:45] difficult or dark or cruel. I've seen a lot of negativity online recently and especially in the rare disease space from all different angles. And what I love, I love to see is people who

[00:05:59] change the narrative, who are bringing light and joy to their communities despite all the terrible things that are happening. And I don't mean to say this in a toxic positivity way that everything is now sunshine and rainbows and unicorns and life is wonderful and I'm skipping around singing

[00:06:16] all day long because that's just not true. Things are hard but I'm starting to see life differently and I see other people doing too. I see them doing incredible things and I'd like to dig into that

[00:06:27] more, to explore that more. And I think Effie you are the perfect person because you have access to this whole rare world and you meet people doing really awesome things all the time. And you also

[00:06:39] see the dark things too, right? So you know what I'm talking about when I say it can become very heavy in that space. Yeah and I think this definitely was birthed from both of us kind of

[00:06:51] getting tired from that, right? And we've spoke about it before on the podcast and with Kera Ariska from Special Needs Mom podcast a while back about sort of this stake in the ground that

[00:07:02] it seems like you're pressured to plant, right? Whether it is everything is awful and everyone around me must validate how hard and traumatic and just in pain I am and see me, see me, see me.

[00:07:17] To also the oh the universe, the God, the whomever, the whatever has a plan and everything is perfect and I wouldn't change one single drop of any second and everything's amazing rainbows, right?

[00:07:29] Like both of those are extreme schools of thought and I really don't like super, super sure things like that. I believe there's so much beauty in sort of this middle area and I think that's where

[00:07:43] it's probably healthiest for me personally to live because I know how I feel when everything is awful and I also know how I feel if I am totally, totally deflecting reality, right? And thinking

[00:07:54] it's perfect. So I think that it can be hard when we have people we love or trust or listen to or who are active on our feeds sort of creating the conversation, right? And leading the conversation

[00:08:11] and it's hard to sort of make a choice or feel like you are brave enough to make a choice or that you're allowed to make a choice in kind of what direction you want to go in living your life

[00:08:22] like this and like it can, it can be confusing and it can be exhausting and people can just give up in general. I think that's really hit the nail on the head. So many people that I speak to feel very

[00:08:33] lost on social media, you know? They, they want to share the good, they want to share the bad but then they feel like they can't win. They feel it's either too good and it's not sharing the whole

[00:08:43] story or it's too bad and that's also not sharing the whole story and they come and I don't know, they're oversharing or undersharing and people just become a bit paralyzed by it all

[00:08:52] and I think for so many they're a bit lost on how to use social media in a way that feels good to them anymore. And also I'm going off a tangent here but I think people are really tiptoeing now

[00:09:04] because there is so much animosity if you use the wrong word. I know you've discussed this a lot too and so I think people are often scared to open their mouths now and again there's that paralysis.

[00:09:17] I don't know what to share, I don't know what to say. I'm either scared of offending or putting things in the wrong light. So yeah, I want to kind of explore how we can get back in our groove

[00:09:29] and really tap into what makes us feel good as caregivers or perhaps rare disease patients in the social media sphere. Yeah, I mean it does take bravery to sort of have a positive

[00:09:44] message right or come out with something lighter or happier. It is easier at least for me to stay stuck or not you know it's not actually like I've conditioned myself that I know that's not

[00:09:56] easier but I can see how it is such a natural response to just kind of be in the dark right and to feel like things are happening to you and you don't have a choice. And it takes a lot of

[00:10:09] practice, a lot of guts and really just I don't even know what it is, just the desire for something more to really like you said dig earlier to really dig yourself out of that. I like to use that image

[00:10:22] that we've always seen online about how a special needs parent fell in a hole and nobody else knew about the hole. I don't know how it goes but you know what I mean and then there's a special needs

[00:10:30] parent who's in the hole with you who's like yeah I get it babe. And I always like loved sort of the message in that but I feel like what sort of happened was that everyone just went down in

[00:10:41] that hole to commiserate and nobody else was really concerned with getting out of it necessarily. And it almost is like if you want to find the happy and find the good and find the positive

[00:10:50] that you're betraying the fact that it's also not any of those things. And it's I think it's hard for for us to like feel that we're allowed to explore that area without denying these really

[00:11:03] really really hard truths also. And I want to figure out how to do that and make it normal. Definitely and I think there is a natural progression of feelings. I think when we are hit with

[00:11:16] really difficult diagnoses of our beautiful kids there is a period where we are sad, we are feeling all these things. I think we can all agree we don't want to stay there permanently and I think

[00:11:27] so many people want to find the joy again in whatever way possible. And maybe there is some guilt. I remember my husband saying to me once I feel like we should be sadder. I feel like people

[00:11:39] look at us and we're not sad. And he almost felt guilty that we were happy. I remember thinking that sounds so crazy. Like we don't have to be sad. Like we have a great life. Things are hard but we

[00:11:53] have a great life too. And I think about that moment a lot that we were happier than people expected or than we even expected. Yeah I totally feel that. And I really do believe that it is so

[00:12:07] important for us to recognize our hardships and like when it is all consuming and painful but without really letting it define our narrative for too long. And I think that's kind of it right? Like

[00:12:20] I feel like it's so important to go through those really really treacherous waters a little bit. It's almost like there's one or two things that happen. Either families get totally in the awful

[00:12:32] right? And they're going through it. Maybe some veer off to the left and they stay in the awful. Maybe you get better right? And you see the remnants of this storm. Or you off shut. The

[00:12:43] other totally way like veered the other way that is like I never felt anything. I just went and did action action action. For an example maybe the parent who's like I started a foundation in 24

[00:12:54] hours and I'm doing this right? Like some people just don't ever necessarily even go through that feeling moment. And again I think that that middle thing is so important to try to focus on no

[00:13:04] matter what you're doing. Is look at the extremes and look at the middle and really take from both places because you can't pretend pain and hurt and stuff doesn't exist. And you can't let your body

[00:13:16] not have sort of that experience to something that's very real. Because who know I think we know what happens when we don't let ourselves feel or when we bottle things up right? Like

[00:13:27] it's a whole other it's a whole other direction that it can go. And this is the beauty of being on social media when you say hey guys I'm going through this absolutely terrible time. That's

[00:13:39] when they jump in and say I've been there. I'm here for you. I'm sitting in that hall with you. They hold your hand until you're out again and that's so so important because many of us live

[00:13:50] in isolation for various reasons. And that online community can be the lifeline that gets us through and out of the hole and on with our lives until the next hard thing happens. I'm really a huge

[00:14:04] supporter of social media for those well for many things but for definitely those moments. Oh my gosh me too. Social media saved everything about I think our path and accelerated a lot of

[00:14:16] healing. Having that community that you could tap into wherever and whenever you needed. And from a parent who is in every step of sort of the timeline right? Like you can access all of that if you're

[00:14:29] sort of looking in the right places or sharing the right message. People show up for you. People show up for you in that hard and they also show up for you in the celebrations. I definitely feel like

[00:14:39] sometimes the sad stuff gets way more engagement and I think that again it can be used for purposes that aren't that great where it is used for that engagement rather than for that

[00:14:52] for that source of community comfort. But it can absolutely embrace you and save you and help you move on. Definitely. I have a question for you. I don't know if you feel the same or if you agree. Do you

[00:15:07] think some parents, especially if they're parents of children who have a rare genetic syndrome that has a huge spectrum or perhaps the diagnosis that has a huge spectrum, if they're afraid to share progress or positive times because there are people whose children are more severely affected

[00:15:25] whose children will never do those things. Do you think there's a fear of making people feel bad or making people feel upset that their children can't do those things? Oh absolutely. I hear this

[00:15:36] story all the time in from different families. You know the parent who's too afraid to even chime in anywhere because their child doesn't have you know visible disabilities or bad enough seizures or doesn't use a wheelchair. You know like those parents definitely can feel super isolated

[00:15:54] because they don't feel like their kid is sick enough or their kid is you know severe enough or whatever it is and they feel like they'll be shamed for not being grateful for how good their

[00:16:07] kid's doing. And so they have their own special type of isolation and you know it can it can be on purpose too. I mean I know that there are people who do shame those people like they shouldn't even

[00:16:18] be talking about this. You know their kid isn't gonna die when they're 10, mine is. You know like and also you know I can understand that anger and that pain and sort of that thing but what's

[00:16:27] happening is there is a line that has been drawn in some places, in some communities with some people that is exactly that and it's isolating another like demographic of our families right who do have the right to have feelings, to feel whatever type of way with what's happening

[00:16:47] with their family and they don't necessarily get that validation. And so they don't comment as much or they don't show up or they don't even have social media. I think that yeah there's a really

[00:16:58] special type of isolation for families like that and I don't know how to make people, I mean I think that's just that whole like oh can't we all just be nice and understand that everyone comes to this

[00:17:11] from a different place and different coping skills and different backgrounds and different family members like there's so much more to it than hey that kid can walk and mine can't so you should be

[00:17:21] quiet. It's not that simple ever. I know there are even Facebook groups where parents are not allowed to share certain things because it upsets the other members and I understand that I do

[00:17:34] as you say some people their children won't live long they are in terrible situations but there needs to be a safe space to share the good. I feel like each person deserves to have a space where

[00:17:43] they can share the positives because then they're stuck in this kind of no man's land with no support and we all need each other like this is what I've really noticed as time's gone by.

[00:17:57] For me personally I think I was that person I couldn't see children doing you know quote unquote better than my son you could do this you could do that because I was in pain but as time has gone by

[00:18:08] I'm able to to see those things and separate it you know I'm happy your child is doing that I'm happy your child is doing well I'm happy your child is healthy maybe because my son is doing

[00:18:17] things I didn't think he would do but time has definitely been my friend and I hope it's the same for a lot of families that they can separate being happy for someone else and sad perhaps for

[00:18:29] their own situation. It's tricky, it's tricky we're all different um I definitely see this as not black and white. Yeah and you know that also makes me want to say and also because it's okay if you

[00:18:43] kind of vacillate between that even 10 15 20 years later like that's okay that's totally normal just because you feel great right now and you've have like felt like you've made so much progress it's okay to still feel maybe jealous or envious or bitter or whatever sometimes like that's so

[00:19:03] okay like for example this isn't a real example but like if I am having a horrible day bad no good day or week or whatever or things are just really hard in my life and my family and I see

[00:19:17] another kid doing something like I might get pissy about it for a second but I'm not gonna judge myself on it and think that I am like backstepping. I think I'm just gonna notice it know that it's

[00:19:27] okay to kind of have these feelings sometimes but that I know how to get out of it right like I think I don't think it's always like this trajectory that we're gonna be great and we're gonna be happy

[00:19:38] and it's gonna be wonderful I think life is messy and I think that this whole situation is so unique and we need to recognize too that it's super unpredictable but to really kind of stay in our

[00:19:50] true sort of selves right and remember what we've learned and remember who we are but yeah don't I try not to ever get mad at myself for when I suck unless I purposely sucked then I would get

[00:20:02] mad at myself which I've done a couple times I think and I don't like I don't like that like that's what makes me feel icky but having a feeling of being jealous because you know Casper

[00:20:14] is running through the park and Ford's not I don't I don't feel I don't feel bad about that for myself. Right I think that goes back to what you were saying about the positive and the negative we

[00:20:24] are constantly I love the word seasons we're moving through seasons a bad one a good one it can be short it can last an hour they can last a year they can last however long good and bad we're

[00:20:34] constantly moving in and out and I think it's the same with feelings you know I said I've I'm much better than I was I'm not perfect it's not like I'm like everything is wonderful

[00:20:47] and I'm never jealous get jealous too you know when I see kids who are more mildly affected than my son sure I think why why is your kid less affected than mine and everybody has the right and

[00:21:00] permission to feel that way 100% and the same with what we talked about sharing these hard things online but I think we both agree that you can't just share those things well you can you can

[00:21:12] do whatever you want but we would love to see and hear a wider spectrum right you know the glimmers kind of the the ray shining through the clouds they are there they're there every day maybe not

[00:21:27] every moment of every day and that's something I think we both would love to draw attention to to bring out in our conversations um and perhaps in future episodes yeah totally and you know maybe

[00:21:41] it's questions that we ask or prompts that we have just to sort of like help everyone including ourselves kind of I don't know get into a rhythm right like thinking about a story when someone in

[00:21:54] our community like inspired you to be brave or like how has your perspective on positivity even changed since becoming a rare disease parent and like I think there's a lot of progress to be made

[00:22:08] for each other when we lift each other's when we lift each other up too that's like one of my mantras I believe that we rise by lifting others and I think that you can really get a lot of bang

[00:22:20] for your buck even when it's simple things of just celebrating someone else's achievement or highlighting someone else's content that they made or I don't know finding these stories that inspired you or that celebrate something or that made you smile and sharing more of that and kind

[00:22:38] of shifting the narrative a little bit on on social media and not hiding the bad like you said of course but maybe also highlighting the good yes absolutely I would love to give your listeners

[00:22:52] a challenge if you will let me if they could submit the best thing or the most beautiful thing that has happened to them since being a part of the rare community I would love to hear stories

[00:23:04] from them because I know each one of your listeners has at least one amazing moment that happened either directly to them their child or someone they know I'd love to hear them what about

[00:23:16] you yes I love that yes share stories of bravery share stories of connecting with the community whatever it is I would never be able to choose that I could think of like 978 of them off the top of my head

[00:23:29] okay Effie Parks I'm gonna set you the challenge too I would like you to think of one there's no way I can do that Katie it's literally impossible Once Upon a Gene has blessed me with

[00:23:40] too many encounters that are out of this world amazing like just I mean I think that's why I am so I don't know really sure about this concept is because I've seen it work I've literally

[00:23:57] experienced it working I've been so entrenched in in the rare disease and caregiver community from my next door neighbors to across the world that I've just seen so much of this goodness manifest and grow and create things and I've watched people go on and do things they never

[00:24:17] imagined they would do and have relationships they never thought they would have I mean I've seen so much that you could not change my mind no matter what happened I think

[00:24:29] perhaps that's your book idea Effie I need to put them all down okay so yeah with chasing our with chasing the glimmers uh we would love to know about those little things right like literally

[00:24:40] from whatever you could imagine could be the smallest thing in in time and space that was a glimmer to you to this human being that changed everything um we're gonna have people on the show

[00:24:52] like Sean and Kyle who I know were beacons for me and for you Katie and we're also gonna start maybe writing down our own glimmers and sharing them with you and you can tell us your glimmers and

[00:25:03] we'll shout you out on the show like we want to kind of spread this and really make this almost like a practice right like a daily sort of practice way better than a gratitude journal

[00:25:14] because it's more fun and it's with us our goal is to help each other find a balance where we can accept and grieve all of these difficulties while also embracing and seeking out these glimmers

[00:25:28] of hope and joy and I just think that having a more balanced approach or at least the thought of making a more balanced approach it's just more sustainable and I think once you go off on a path

[00:25:41] that you know is better for you it's really really hard to look back and not change something I really really believe that that once you have some sort of awareness into something

[00:25:52] better or brighter or more that you can't just go back to your old ways and crawl back into that hole 100% so I want to ask you Effie if you have a listener who is in that hole who sees

[00:26:07] you know they're inundated with negativity and really hard things are seeing really terrible things on their feeds and the algorithm is not you know doing nice things for them what would

[00:26:18] you say to them what strategies would you advise to kind of see things in a different way what can they do to either protect themselves from the negative or seek out chase the glimmers chase the positive

[00:26:31] I'm only gonna say exactly what I did for myself and not give any lofty advice I I found that for myself when I felt like that and all I was seeing were the worst of the worst and

[00:26:46] like every day there was like 10 kids on my feed dying and it was this and there was that honestly and this is not to promote to self-promote once upon a gene everyone knows my story of

[00:27:00] how listening to other people's stories and dipping into the world of people who were doing this in the medium of podcasting changed my entire life and it was so because yes there were people

[00:27:12] like Sean and Kyle doing this and spreading light and joy and letting us know that their life wasn't over because they had a rare disease but what was so so important for me as a caregiver who was

[00:27:23] deeply isolated so sad so disconnected was that I could go and reach into this land of podcasting and take everything I needed without having to give back one single thing I got to find my people and

[00:27:40] my friendships and have this stuff sort of fill me up and be my companion and be my friend and I didn't have to do anything back because I didn't have anything to give at the time I just needed to

[00:27:52] be like on the receiving end and that was so important because when you are in the thick of it and when you are just sort of becoming you know you're a new parent you have a kid and he's sick

[00:28:05] and everything is awful and you don't have any answers you can't give anything you really can't not genuinely and not knowingly you need that sort of embrace and you need to pick and choose the

[00:28:18] things that are going to help you and you need to not have that pressure it's the same thing as when people say how can I help you I can't tell you how you can help me because I can't figure it out

[00:28:28] don't make me have one more thing to do and that's what listening to stories from other people did for me I got to just let it all sort of wash over me and get into my brain and get into my heart and

[00:28:42] I wasn't responsible for making anyone else feel good so that's my long-winded answer of why I think it's so important to seek out things like this where you can just receive.

[00:28:52] I discovered you I was living in rural Switzerland in the height of the pandemic with a son who had just been diagnosed with a rare disease and you know I was driving to work some days or driving

[00:29:05] to all the therapies and I would just listen to you I was like who is this woman with a sparkly voice who sounds so upbeat and I'm in this deep dark hole and it would lift me out you know just

[00:29:17] listening to your interviews and listening to you talk and like you say I didn't have to do anything it was wonderful and I do I really want to highlight something you said you I've written

[00:29:27] it down because I'm the organized one you said you pick and choose and I think this is so important you can pick and choose what serves you you know if that Facebook group is not serving you get out

[00:29:39] you need to do what you need to do that person's account on Instagram is making you feel bad unfollow mute whatever you can curate what makes you happy what makes you get out that hole you

[00:29:54] know you don't have to do anything you don't owe people anything especially when you're in an absolute crisis mode you have to look after yourself and you absolutely curate at least

[00:30:08] one part of your life when everything else is out of your control you do have some control and that's what I would advise people to that's what I did and even now I saw someone the other day they said

[00:30:17] their baby was sleeping through the night I have been almost nine months old he is not sleeping through the night and I just unfollowed her like I'm sorry I can't deal with that and that I feel so good

[00:30:27] yes I love that what's really important yeah that's it right like you're not being mean you're not being a bully you're not like gonna make some scene that everyone's gonna know about like just exit babe just unfollow exit mute like this isn't about anyone except starting from the

[00:30:46] root which is you because again your family is better off when you're better off period and there's just no time there's you just don't have to stay there you don't and like you can learn

[00:30:58] about the things that you need to learn about without maybe being in a group that big or whatever I mean I remember thinking that about the microcephaly group right like I was so consumed at

[00:31:06] one point with Ford's microcephaly because of all the bad things his doctors told me about it and that's where like oh my god every hour there was a new kid that had passed away and I was like

[00:31:16] what am I doing here what do I really need to know about microcephaly at this point nothing it's here it is what it is I can't change it on Ford's head and you know it's gonna be that spectrum for

[00:31:29] everyone so like what am I really doing here because all I'm doing is getting sad and getting mad and feeling scared there's nothing else I need to know about it just leave do it I was in

[00:31:42] five infantile spouses Facebook groups I just saw video after video of children having seizures and in the end I left all of them except one which is now mute because I didn't need them

[00:31:53] it was not bringing anything positive to my life and it's not me burying my head in the sand it's me protecting myself in a way that is healthy and absolutely fine nobody knew if

[00:32:04] it was completely fine and I think people need the yeah to give themselves permission to do those things to take those those steps and also with podcasts it's a bit like dating sometimes it doesn't work out sometimes you don't like it even though all your friends recommended

[00:32:19] it it's okay pretend you listen or tell them you didn't do what you need to do amen totally it's the same thing like great the more voices the merrier because not everyone's gonna fit for you

[00:32:31] right and you gotta find someone who speaks to you and you also really have to check in with yourself later on down the road and go is this person that speaks to me helping me still like

[00:32:42] is this is this a good fit still have I evolved like think about that because I know it's the same thing as like being in a show hole right like you can watch the same stupid show on Netflix

[00:32:54] over and over and over maybe it's a source of comfort but maybe it's not maybe you're numbing yourself and not letting yourself be brave and do something more or get out of your head like

[00:33:05] you gotta check in with yourself and maybe it's the first of the month every month check in with yourself about what you're consuming about what you're doing about where you're going and just

[00:33:15] make a mental note or make a real note like Katie would because she probably has a notebook with her like think about it and really check in yeah I do know married condo she's the cleaning lady right

[00:33:27] she's the organizing lady okay she's my hero but anyway when she's helping families to organize their homes and declutter she always asks them you know does this item spark joy and I think it's the

[00:33:41] same does this interaction this account this podcast does it spark joy is it bringing something to my life that is uh is it bringing value is maybe the question doesn't always have to spark

[00:33:53] joy is it bringing value or is it just kind of beating me down back in the hole yes I mean there's this idea of like is it entertaining me is it educating me is it inspiring me uh like

[00:34:08] think about things like that right um because all of those things are good all of those things can be true but yeah pay attention that if it's holding you back or if it's making you upset or

[00:34:18] if it's whatever I think you know I think it's pretty easy to trust your gut if you are looking to trust your gut yes absolutely yeah I'm just ready for some brighter days ahead for everyone

[00:34:29] it hurts my heart when I see people who are stuck who are staying stuck right because you watch it also evolve or or sort of devolve to anger and sometimes complete exit and that's sad and hard

[00:34:45] to watch and I just really want us to be better at supporting each other and uplifting each other and just really strengthening this this bond that we all have in the path that we are parenting

[00:34:58] and I think that we could all show up a little better as much as we can right it's out there it's happening it's maybe happening quietly and perhaps we can bring the spotlight to some of

[00:35:12] these very exciting things happening in the community but yeah maybe it's a bit quieter than it needs to be yeah so we're gonna highlight some daily things and some ideas and some actions and

[00:35:24] some individuals and we're just going to kind of ride this so hopefully you can jump on and recognize and celebrate some of this for yourself um and in others I really believe that serving is

[00:35:38] service in some way right like what is it called when you get in trouble community service I really believe that being of service in some way when you have learned something is so so important

[00:35:50] obviously for everyone else but also for yourself I think that when you help people and when you give back you you don't even know what can happen the possibilities are endless when you really kind

[00:36:03] of focus in it as like a service mindset and that you're just offering things and giving things and doing your best to leave it better magical things can happen and you can have a whole new career or

[00:36:16] a whole new sort of passion project just by giving and helping someone else along the way I know that to be true I think people when they hear that they probably think big like I have to

[00:36:31] raise a million dollars I have to walk barefoot across America I don't know it can start really small and what you might see as something small is huge for somebody else I remember I had a friend

[00:36:47] in the really early days of Casper's first diagnosis and we didn't know what had caused it we knew it was a cause but we didn't know what caused it and in my very sick brain because I was

[00:36:59] depressed at the time I blame myself and she sent me a voice recording saying Katie this is not your fault and I would listen to it 10 times a day and she probably you know took her 10 seconds but that

[00:37:10] meant so much to me so it doesn't have to be huge gestures and lots of money can be really small and that tiny glimmer is like a beacon for other people oh my gosh Amen I'm so glad you shared that story

[00:37:26] because yes again it's that it's that spectrum right in what you think needs to be really big shiny things but it could be the most simple of a message that you send to that mom who is struggling

[00:37:40] that can change their path completely and it doesn't have to be sort of this monumental Pinterest worthy sort of endeavor right like it can be dropping off spaghetti you know like you

[00:37:54] don't know how your good that you put out into the world is going to be received and you might not know and it might be the best thing that ever happened to them right they just might not end up

[00:38:05] telling you or know you because maybe they're listening to you from afar like you just never know who's it's who it's going to touch and how it's going to affect them and I just think that

[00:38:16] your intention is so important right and that nothing bad could happen from a really beautiful thing that you decided to do for someone else I completely agree and if anyone wants to drop

[00:38:27] spaghetti off at my house I will happily send you my address oh my gosh I would I mean I make the best spaghetti sauce like ever okay so when I come to visit you in swisseyland I'm gonna make it one

[00:38:42] night I accept that's a glimmer I'm excited for it yeah speaking of a glimmer you know what we'll tell them about our glimmer with sean later we'll just get sean on we have something very exciting

[00:38:56] planned that's all I'll say we really do oh my gosh what do you want to leave our friends with to think about today I think a few things like one to hopefully not see this as a crusade against

[00:39:11] all negativity and that we are here to only talk about positive things because everything is wonderful no as you said it's a spectrum so I don't want anyone to think that we are preaching or ramming things down our throats that are not true we're not we're just here

[00:39:28] to frame things a bit differently to see things through different eyes and to to maybe go away and think about either to notice some glimmers that may be happening in their own lives either

[00:39:42] to them directly or indirectly and to perhaps just yeah take notice what's happening how do I feel about that what happens if I turn my attention to that does that have a positive effect on me

[00:39:53] yeah just a little bit of homework there for your listeners anything you would add Effie I love that and it really just like put an image in my head so sorry I was not fully listening

[00:40:04] because I was thinking that that reminded me of like paddleboarding I don't know if you've ever been paddleboarding I bought a paddleboard last year but like you have to be really strong and

[00:40:16] really good to be able to stand up on that paddleboard and you get to see beautiful things from a different perspective and go out into the sunset or the sunrise and like do this amazing

[00:40:27] thing that took you practice and took you strength and sort of you have to be mentally and physically stable for it but even the most perfect person can still be completely knocked off that board at any

[00:40:38] time and I kind of think about this as this right like you're never going to be perfect you're never going to be like conquering anything but you can try and you can get better and you can know that

[00:40:50] you can get knocked off but you're going to have that thing around your ankle so you're not going to get lost and you're going to figure out how to get your butt back up there even though it's not

[00:40:58] pretty ever and I think I think that's a good way for me to sort of move move through is just to not leave space to be disappointed in myself if I screw up again unless I was particularly doing

[00:41:15] it on purpose and sucked. I think the lovely thing about the rare community is like when you actually look around everyone is on that one paddleboard falling in getting back up falling in you know

[00:41:29] some more than others um but we're all just kind of figuring it out together. Yeah yes there's always those jerks on boats who are going to like make the wave way too big and screw everything up like

[00:41:39] that is always going to happen I think more so than not but yeah I think we just have better agility for a lot of things than we did before and I think it's a constant sort of practice right

[00:41:52] an awareness and keeping on that's that's my deep thoughts it's a paddleboard. That's a good metaphor so we'll just keep on keeping on together. Yes yes and hopefully there's no sea monsters. Okay Katie I

[00:42:08] love you so much and I'm so grateful for you and I have called upon you many times in a lot of those moments that we spoke about today and I can't believe that I got to make friends with you

[00:42:22] who I never would have met in a bazillion quadrillion years if it weren't for our boys and if it weren't for the magic media of podcasting and telling your story and reaching

[00:42:33] out for community and I'm just you're my glimmer today Katie so. Oh I'm on it. If you have a glimmer shout out for anyone maybe we could do that in every episode. Well now I'm on the spot.

[00:42:46] Um I don't have one personally right now if I say you I'm just stealing yours there's always you but today I saw on social media a mum who'd run out of formula for her daughter and it was going

[00:42:58] to take I think two weeks for the formula to come so it was a special type of formula um for tube feeding and she got like three thousand dollars worth of formula from complete strangers who asked

[00:43:11] for nothing not a cent and that for me is just the glimmer of good in the community that someone asked for help and it was just inundated with with help and she was absolutely floored by that so that's my

[00:43:25] impersonal glimmer give me a bit of time I'll have a few more for next time. No that's perfect I love I love the spectrum of where glimmers can shine I love that um and I think I saw that post

[00:43:38] too it was about the food the feeding tube boxes being sent over love that oh my gosh yay that makes me so happy. Okay Katie let's leave it with that for today and glimmer on. I'm excited

[00:43:52] for next time thanks Effie. I hope you've been enjoying this podcast if you like what you hear please share this show with your people and please make sure to rate and review it on iTunes or

[00:44:03] wherever you get your podcasts you can also head over to Instagram, Facebook, and Twitter to connect with me and stay updated on the show. If you're interested in sharing your story or if you have

[00:44:14] anything you would like to contribute please submit it to my website at effieparks.com. Thank you so much for listening to the show and for supporting me along the way I appreciate y'all

[00:44:24] so much. I don't know what kind of day you're having but if you need a little pick-me-up Ford's got you.