Ep. 107: Season 6 Finale episode w/ Brittany

 

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Summary

Brittany Steitz is back for the Season 6 finale! For the first time ever, every episode in this season was sponsored, which meant that we were able to grow our team and I was able to branch out creatively to bring you an even better podcast episode each and every week. This episode was so fun as we reflected on how the podcast has grown this last season.

In this episode, we listen to a short clip featuring snippets from every episode in Season 6. Then we’ve got three recorded voice messages from listeners where we get to relive our favorite parts of the season. Toward the end of the episode, Brittany and I recap some fun behind-the-scenes updates and how it’s been working with sponsors including this amazing community who sponsored the last two episodes this season! And finally, we’re sharing how I’ve changed up The Rare Life’s upcoming “off-season.”

I can’t wait for you to hear this episode, and I’m so grateful to have shared another season of The Rare Life with you. See you next season!

Episode Transcript

Madeline Cheney  0:00 

Hi, you're listening to The Rare Life, and today we get to celebrate another awesome season in the season six finale episode. And for those of you who joined us last season for the finale episode, you may remember that I was joined by my friend Brittany Steitz, who is also a member of The Rare Life team, and I'm really excited to have her again, because it made last finale like, way more fun for me than the ones before that. So say hi, Brittany.

 

Brittany Steitz  0:31 

Hello, everyone! I am so excited to be back.

 

Madeline Cheney  0:35 

Yay. Okay, Brittany, can you like really quick explain your role, because we've had a lot of new media listeners join our community, which is so exciting. And we'll talk more about later. But if you could just quick intro for those who are new joining us?

 

Brittany Steitz  0:50 

Yes, of course. So I am in charge of the sponsorship program at The Rare Life. And my main goal is to connect the podcast with companies who really care about our members of our community and our kiddos and our parents and help bring more episodes to life.

 

Madeline Cheney  1:09 

Yay. And Brittany, she came into my life when her son Logan was diagnosed prenatally with the same syndrome as Kimble, which you know, 1 out of 125. Like it's so rare. So I love when you know, I get a little DM in my inbox and meet another mom of a child to CDPX1 . Unfortunately, her son passed away in utero. But we kind of like were chatting back and forth during that. And then she kind of turned up a few months later and was like, hey, I want to help and give back to this community. And that's kind of where she voluntarily filled this position to help me get funding. And that is like, I don't know, I feel like that sounds like Oh, funding, but like that is so important. Like I really was so burned out when she messaged me. And so this season has really been kind of our guinea pig for partnering with these companies. So that's been really exciting, which I think we'll talk more about, we have like a whole section about that. So we'll talk more about that in a little bit for like updates about the podcast, behind the scenes. But first of all, let's celebrate the episodes of season six. I'm really, it's related to the sponsorships like because of like kind of this rejuvenating support that I've been able to receive both from the funding, but also just having Brittany as a member of a team. I just feel like my creativity has really spiked, and I've been able to like really put more time and effort and thought into like the content of the episodes, which has been really, really awesome. And I feel like we've seen a lot of great responses from this season's episodes, and like the topics and the guests. So I'm so grateful. I just love these finale episodes. Like they used to be kind of tedious, but like now, every time we get to just take a step back and celebrate a season is very rejuvenating for me. And it helps me just like, calm down for a second. Like think about the content that we've been able to produce and just feel grateful for the audience, feel grateful for like guests, this time for the sponsors, which is really awesome. And my favorite is hearing the listener takeaways. I'm excited to hear those.

 

Brittany Steitz  3:20 

I can't wait.

 

Madeline Cheney  3:22 

So fun.

 

Brittany Steitz  3:23 

I think every time I hear an episode, and again, for those who didn't hear the last season finale I was on I'm like Madeline's little hype girl, sidecar, roadie, and I'm like, every episode is so powerful. There's so much to think on. There's so much depth there. And again, I think about this entire season in that way, as well, I just think every episode has really packed a punch in one way or another. It's just so great.

 

Madeline Cheney  3:56 

Thank you. Yeah, it's kind of fun for me to like, for those of you who are newer listeners, we have three themes that we kind of cycle through. So like, each season has a theme, and we come back to it. And so this is our second time around doing a theme based on our relationships and how those have evolved because of our children. And it's just been really fun to be like, okay, I feel like I'm like really getting a handle of like, what you as listeners want to hear and what really resonates. So I don't know, that was just really fun for me to be like, okay, second time around. Let's do this again, which is you know, how it's gonna be for each of these. In fact, for season seven coming up, that theme is going to be we're going to be our third time through that theme, but it's just so fun because you can just take different angles and there's just a million different...

 

Brittany Steitz  4:41 

There's so much to talk about. There's so much to unpack. The onion just is never ending. Peel it open.

 

Madeline Cheney  4:49 

Well never ending content to talk about, so yay. Okay, so here's how we're going to do this finale episode we're going to really celebrate the episodes of season six, and we're gonna do that by listening to season six compressed into a few minutes. So there's just like an audio clip from each episode. And we're gonna go backwards this time. So those of you who are like older listeners, you know, we usually start from the first episode of the season and go all the way through. We're gonna start with like our most recent episode and go backwards. So that's kind of fun. And then just to kind of jog our memories of like, well, it's like, really think about the episodes. And, you know, while we're listening, you can kind of be like, oh, you know, what were my takeaways from that episode, and how did that impact me, kind of make it personal. And then we're gonna listen to our listener takeaways. And then after that, we'll go into a section all about kind of behind the scenes stuff that you know, that we want to share with you. And then I will give you insight into how we're going to do that in between season this time, because I'm really excited about that. And as well as talking about season seven's kickoff episode. So let's dive in and start out with listening to season six compressed in a few minutes.

 

Brianna Christian  6:03 

Part of our journey here is just going to be like continuing to learn with him continuing to acknowledge him as he is as he wants to be. I think in that time, we were also holding on to the hope that like, we could fix it. There's something wrong, but like, it's fixable.

 

Madeline Cheney  6:24 

You know, as one mom said, she said, "don't pretend that nothing's changed." And I think that's really important. Like, we need to acknowledge that things have changed that we are different, that our relationship is going to be different. But we want you there in our lives still.

 

Dr. Lexie Kite  6:37 

I still do whatever I can to make sure my kids know that my body is good exactly as it is. That everybody's bodies are good. That there is no moral failing in body diversity. That that's like a really good thing.

 

Tiffany Pasilles  6:54 

I don't have family or friends who can do this stuff either. So it's really the onus is on me to be everything to everyone, and that load does get heavy at times.

 

But back then it really was constantly trying to prove that she was worthy of life and why. And constantly trying to contradict what they were taught in medical school or nursing school about my daughter.

 

Madeline Cheney  7:23 

As parents, when we have a child with a diagnose some sort or a disability of some sort, we are not suddenly obligated to raise awareness about anything.

 

Amanda Griffith-Atkins  7:34 

We don't get to make this decision joyfully and easily the way that it feels like maybe some other parents are able to do it.

 

Melissa Schlemmer’s  7:44 

Our kids with medical complexities come with a lot more a lot more responsibilities, and his brothers don't need to hold any of that.

 

I don't grieve anymore, that he's not going to walk unassisted. That part is no longer this like, source of pain for me. I think more so the surgeries, the hospitalizations, the potential that an illness could take his life.

 

Madeline Cheney  8:17 

It feels like they choose anything in the world rather than my child and the life we have.

 

Libby Holley  8:24 

I've heard so many times: "I can't imagine what that feels like; I can't imagine what you're going through." And I thought, yes, you can. And it's probably worse than you imagine. And then, at the same time, I've always thought, "You're right. You have no idea. This is beyond your pain scale."

 

Chelsea Denham  8:44 

We had to be okay with that and we also had to be okay with having tough conversations with people, to say, "Listen, I know that you're lovingly trying to give me this advice but I didn't ask for it, so please stop."

 

And then by that time, I was being wheeled back into the room and they had already called the NICU to have someone come and check them out.

 

Madeline Cheney  9:10 

I don't know, I just, like I was like, is it okay to say this? But I just feel so much pride. Like it's, I mean like is that bad?

 

Brittany Steitz  9:18 

No.

 

Madeline Cheney  9:18 

Is that like such a bad like stigma? But I'm just like, I am so happy with these episodes. And I like I'm so in love with the guests that I got to chat with this season. I don't know. I just like every one of them I'm like, "ah, oh, I loved that episode." Oh, that was so fun to make.

 

Brittany Steitz  9:32 

I literally after every clip I was like nodding and being like, yes, yes. Like every, I do. I remember listening to every episode. All my thoughts around it all my feelings. Yes. It's just incredible to listen to these little clips all at once. It just packs such a powerful punch for sure.

 

Madeline Cheney  9:51 

Yeah, and one thing too I guess I should mention, is that mixed in there was episode 100. I never really did anything to celebrate that I'd still need to, like do something on a personal level to celebrate that. I was like, I should do like a reel about this. And I was like, I don't want more work. That's not celebrating me. I want like, less work. So I didn't do it. But like yay 100 episodes like that's such a big, big milestone in the podcast. So hooray. You know?

 

Brittany Steitz  10:21 

Yes. Such a milestone.

 

Madeline Cheney  10:24 

Yeah, like I say, these episodes are so fun, because it's a chance to like, sit back and be like, Wow, I'm so happy about all those episodes. And so it was kind of a fun reveal when an episode of released and to be like, "okay, I like this topic, obviously, because that's why I made it. And so like, is it gonna be a flop? Is it gonna be like, super popular?" And the family planning episode about like, should we have more kids after a child with a disability? That one was incredibly successful, like, I was floored, like floored, because of obviously, when I'm making these episodes, like they're relevant right or at least I believe they're relevant, which is why I'm making them I had no idea how much this community was clamoring for something like that. And anyway, that was just so much fun. It's so much fun.

 

Brittany Steitz  11:16 

I think you do such a great job engaging with the audience. And for those new listeners who aren't following on Instagram, or aren't following on Facebook, please do and Madeline asks great questions. And you know, if you have topics that you know, are relevant, share please, because it all comes together, Madeline with your vision and creativity and kind of piecing different thoughts and themes together. I mean, again, listening to all these little clips, just like every episode was so rich in conversation, and there's just so many points in every episode, there's just so much to think about and to consider and to ponder over. I think that's just what really rounds out the rare life podcast, right? That's like what we really want it to be for the community, is that type of conversation.

 

Madeline Cheney  12:09 

Yes, I think that is something that I've definitely been kind of like figuring out, specifically in this season of like, okay, here's a way to include more voices, because you wouldn't believe how many messages I get, like on Instagram and on my website of like, "Hey, I want to be a guest. I want to share. I have so much to share." And it breaks my heart because I couldn't begin to have everyone on because there are so many people that would love to be on. And I understand like, man, yes, I think it would be super great for you to share, I think you have a lot to share with our community, I think it would be really healing and help you process like for you on a personal level. But again, I can't begin to have that many people on. And so being able to, like, you know, for those of you don't know, on Instagram, that's where I'm most active. And that's where I will on my stories, I'll open up a question like, hey, how do you feel about XYZ about, you know, what kind of support do you want from your family? And how do you feel about having additional children after your disabled child. And so that's been a really awesome way to make these topics that are so big, right? There's so many dynamics to it, there's so many perspectives and places to come from. It makes it so it's not just me and my perspective, or not just me and my guests perspective, but we're able to kind of tackle it from all angles. So that is something I mean, like stay tuned. We'll talk more about that when we're talking about our in between episodes. But that is something that I am certainly going to continue to integrate more into the podcast because I love hearing from you guys. And I think you love hearing from each other. And you all have so much to offer insight. And anyway, it's just a great way to include more people. So yay for figuring that out this season. Okay, well, let's hear our takeaways, my favorite part. So first, we'll hear from Madhura.

 

Madhura  14:07 

Hi, Madeline. My name is Madhura. I have a five year old daughter with rare medical condition and multiple disabilities. We live in Chicago area. I like The Tare Life podcast because of how you just focus on one topic or emotion at a time and just come at it from many different possible angles. It is exactly how I have managed to stay afloat through the trauma that is brought on by some of the experiences of parenting a child with medical conditions. Your interviews with other parents and disability advocates have given me so many different perspectives to the things that I felt or just tried to deal with and given me a sense of solidarity. There are times I may not be ready or able to deal with the topic you're exploring in a particular episode, but I know I can always come back to it when I'm ready. And I love that my favorite episode of the season-- season six-- is the 100th episode that you did. It was a solo episode about feeling obligated to raise awareness as a parent of a child with a rare medical condition. While I've never myself felt obligated to do so, I've been torn between wanting to stay connected with my previous inner circle in my previous life, and staying true to how our lives look right now, at the same time. To that end, I've always leaned towards being open about my daughter's diagnosis. But it was amazing to listen to you just filter all the noise that surrounds us, and get down to the basics, that we don't owe anyone anything unless we choose to do so for one reason or the other. So please keep doing what you're doing. It is something that we all need, whether or not we realize it at the time. So just good luck.

 

Madeline Cheney  15:50 

Don't you just love that?

 

Brittany Steitz  15:52 

I love her. Where to start? And well, I think she said it so perfectly, that you take a topic and dissect it from a lot of different angles. And I think when we're just feeling so overwhelmed by so many different things going on with a rare diagnosis, I think that is so healing to just take a step back and think about one thing at a time. And I also love how she said that she'll go back if the episode isn't like suiting her at that moment, or she's not ready to like go there or tackle that particular issue. She kind of puts it aside and will go back when she needs to and just loved it.

 

Madeline Cheney  16:35 

Yeah, I think that's like a such a wise piece of counsel for listeners, because I am very aware that the topics we tackle are heavy, and they are complicated. Like, I think just the other day, I was just kind of feeling it. I was like I'm kind of heavied out right now.

 

Brittany Steitz  16:57 

Sure.

 

Madeline Cheney  16:57 

There's like all the topics that we've been like tackling, they're just intense, and sometimes I get tired of it. I'm sure sometimes you as listeners get tired of it. And are like, wow, this is a lot. And I love that she acknowledges like "hey, like sometimes the topics I'm not ready to like really sit with yet. But I know I can come back to them." And so I hope that like as listeners, you know that to, like this is a rich feast. I don't know, I'm just picturing like, meat and cheese, just like really hearty heavy foods that like you're not always ready for. And especially I think, because I'm like further on like were Kimball's like four now. I feel interested in like, hey, let's tackle this, or let's tackle like our identity as parents or let's tackle like these things that are like controversial or like, things like that, where like a newer parent who is just completely overwhelmed with grief or with medical cares, things like that, like that might be too much for them at that point or something that they're not even thinking about. So I really liked that I really liked the idea that you can come back to it later, you can say, "hey, I'm gonna listen to this, but I'm not going to like put pressure on myself to act or do anything about this. I'm just going to like, let it sit, you know, until I'm ready for it."

 

Brittany Steitz  18:13 

And you know, I think especially for relationships, you know, I feel like the other topics being like, you know, medical equipment or different things, you know, you have to deal with that at the time that it is a part of your journey of the syndrome or your child's health care matter. But I can totally see how relationship dynamics could get put on the backburner? Because there's so many other like, really critical things we need to tackle. So it's like, yes, my sister in law's annoying. I will get to that in six months when I can get to that.

 

Madeline Cheney  18:50 

Yeah.

 

Brittany Steitz  18:50 

Epecially just as it relates to this season. As we talk about like some of those relationship dynamics, I can see how that could be put on the back burner, because there are some other more critical things to handle at the time. I don't know if that makes sense, but.

 

Madeline Cheney  19:05 

Totally, yeah. I think that's a really good point is like the theme that we've tackled is definitely something that like I'm sure all of us all the time are like noticing and being annoyed with. Like hey, like this is really annoying, you know, the sister in law example. But like, that can definitely be on the backburner until you're ready to like, take on something else and be like, okay, maybe I can try to fix this or try to tell her stop or you know, whatever.

 

Brittany Steitz  19:31 

Yes. And for the record, I love my sister-in-law. And if she ever listened to this episode, I'm like, "Oh, I love you so much." But like, that type of intimate dynamic is, is what I was going for.

 

Madeline Cheney  19:42 

She's like, "Hey!" Awesome. Okay, well, thank you Madhura. I loved hearing from you and I so appreciate you as a listener. And I love picturing just, you know, hundreds of different versions of this I just staggering to me. It's so humbling. Okay, so now we get to listen to Kahrissa.

 

Kahrissa Taylor  20:04 

Hi, I'm Kahrissa Taylor, and I am from Greenville, South Carolina. My husband and I have two amazing kids: Rowan, who is three and a half and disabled and Elijah, who is almost two. I started listening to The Rare Life podcast because I really needed a sense of community. Since getting our son's diagnosis, we've really lost a lot of our community and had a really hard time trying to find people who can wrap around us during this time. And so it has been great to be able to listen to other people who are feeling the same thing, or who have been through similar things. And then, this season, I really loved two different episodes and I had a really hard time choosing which one was my favorite. I loved when Chelsea came on and talked about friends and family and staying close when you feel far apart. We physically live pretty far from our family. And so it has been really complicated trying to explain everything, even like through that distance. But it's also just been hard because we don't have people around us to support us super well. We've been really isolated. And so being a parent of a disabled child, you already tend to feel kind of isolated and so adding on to that feeling really isolated from your friends and your family just makes it really complicated. So I loved some of Chelsea's explanations and the way that she talked about things, and giving ideas for how people can support us and what they can do. We've had a lot of people reach out and support us in better ways since I shared that episode. So I've been really thankful for that. And then my other episode that I really loved was the parable of the pain scale. I have felt so much pain, and I've been pushed past my pain scale so many times in the last couple of years. And so I resonated with that episode so deeply. I felt that frustration and that pain of like when you're way past your pain scale, and things that are a two on your pain scale, but a 10 on someone else's, they feel really different. And that I loved the explanations of learning to empathize with people, because you know what a 10 feels like, despite it not being a 10 on your pain scale. You know what a 10 on your pain scale feels like. And so I loved listening to that, and understanding how to empathize with people a little better, because I have really struggled with that after going through a lot of what we've been through in the last couple of years, I've been a little bit bitter. And so I found that to be extremely helpful for us. And I can't wait to see what the next season holds.

 

Brittany Steitz  22:46 

I'm speechless. I mean, the pain scale episode. So, I mean, I think I thought about it for like a month after I listened to the episode and I listened to it twice, just to kind of really absorb the lesson that it was teaching me and then I think she's exactly right. I think we can all relate to being pushed past our pain scale and it can feel really hard to relate to others during that time. But I also think the biggest lesson is that, like she said, you're able to kind of come around and help others when they're at a certain level on their pain scale. What do you think about the pain scale? What is your kind of like top takeaway from that episode? And I want to talk about Chelsea's too, but.

 

Madeline Cheney  23:35 

I mean, I loved it. I think it's one of those episodes and topics I think that can relate to so many different aspects of life. You know, it's not just in our realm of like having children with medical complexities or losing a child, but also just I mean, like a million different things that may isolate us and so I love that it's like a skill really, or a concept to understand that can serve us throughout our whole life with our children, but then also with other sucky things that happen because we don't have any quota on hard, which sucks. That was such a fun one to make with Libby because like when she was explaining it to me, I was like, holy cow. We need to get this out to parents stat like this is something that we need to dissect together because I feel like she had like this stroke of wisdom. And it was so awesome that she was willing to become so vulnerable and share how it relates to her life. And you know how she came to that with Libby Holly, that parent on the episode. So I love hearing from parents about how that episode impacted them. Because I think everyone needs to hear that really, you know? I think it's a really pertinent topic for a lot of people not just in our community, but especially in our community.

 

Brittany Steitz  24:51 

And that's a thing I think it also explains in a way that maybe outsiders can understand the level of heartache or a trauma that can happen. And it kind of crystallizes it since people with typical children may not fully understand the depths, the challenges that that can occur. And so this kind of puts it into a format that they can understand, which I think is probably really important.

 

Madeline Cheney  25:20 

Like Karissa said, I've been pushed past my like, way past my pain scale many times. Did you just like, feel that?

 

Brittany Steitz  25:28 

Yeah, I did.

 

Madeline Cheney  25:29 

I totally agree with you that that is such a good way to convey to others, the pain that we feel like. Okay, imagine your total limit. Now imagine blasting through that. That's how I felt during that. And then imagine adjusting to that, and then having to blast through that again. Like, I just feel like, doesn't just give you chills. It's like, yes, I feel you, like yes, Kahrissa.

 

Brittany Steitz  25:53 

Yeah, like the weight of the waves. It's like, I always think of like the analogy of an ocean, you have like, sometimes some really big waves, you're like, okay, and then there's some little ones come and then just like, one knocks you down, or you turn around at the wrong time, and it gets you and it's just your footing in the ground too with the current. I totally felt it. Which kind of segues in to my little tidbits about her comments on Chelsea's episodes of being able to share directly, things that can support your family and you. I think that that is so important, because there's probably a lot of people in your community that want to support, they may just not know how, or they may not know where to start, or how to even open the conversation. And so I think the more we can share resources like this is, you know, a great way to ask how I'm doing or check in, the more likely they'll come around.

 

Madeline Cheney  26:54 

Yeah. Which is why the episode 104 came to be was kind of like, okay, how can we take this to the next level? Of like, okay, so we heard from Chelsea, which is really powerful. I do think there's a lot of power in hearing from one parent, and like really diving into their experiences with it. But I was like, can we like zoom out really quick and like, get like just a ton of ideas of ways that, you know, our family and friends can support us? And I just think that is so important. Because, you know, like we say in the episode, like, a lot of times, when we need support the most, we are not in a place where we are like can ask enough to ask for support

 

Brittany Steitz  27:35 

Or be specific too.

 

Madeline Cheney  27:38 

To even know what you want.

 

Brittany Steitz  27:41 

When I shared it, I had someone reach out through my Instagram, which are just my friends. But they reached out saying their family member was going through some medical issues with their daughter. And they were frozen in not wanting to upset them in any way. But they wanted to reach out. And so that episode gave them some good like boundaries and ideas of where to start. And I just think if one family or one person, you know, that's what I love about these finale episodes, too, is that you get to hear from the listeners just how important these conversations are. And that's just the purpose behind it, I think.

 

Madeline Cheney  28:24 

Totally. So lastly, we have Alyssa and she is a extra special listener because I mean, she's been a longtime listener, but she also became my editor. And so she's been doing editing and beyond. I think we're trying to figure out like what her official title is, but it's more than just editor now she's been taking on more tasks recently for episode production, which I am so grateful for and is made possible by the sponsorships which we'll talk about the next part, but yay for Alyssa. I asked her to be included in this episode. She's like the one editing this and like producing this episode, but I'm so happy to include her takeaway. So without further ado, let's hear from Alyssa.

 

Alyssa  29:07 

Hi, I'm Alyssa Nutile and I live in Northwest Pennsylvania. My daughter Gemma is three years old and she has PDCD, a rare metabolic disease. And I've been listening to this podcast for almost two years now. A few months ago, I started helping out with editing and production for The Rare Life and honestly, it's been such a gift. So I really loved this last season as a whole. But my favorite episode is probably episode 100 on raising awareness. Because one of my favorite things about The Rare Life, aside from the community aspect and being able to connect with other parents who are going through similar situations, is that your podcast isn't afraid to discuss sticky or sensitive topics or just topics that like we might not all agree on. But even when discussing those topics, this podcast always handles the discussion with such grace and empathy. And it's really hard to walk away from those episodes without having an understanding and an appreciation for a few points that either I might not personally hold or maybe I just hadn't had a chance to think all the way through before. And I think episode 100 is a perfect encapsulation of that, with you sharing so many different opinions and talking through each one. And another thing too is, that episode is a really good example of how parents with older kids who have gone through more and seen more and just had more time in the rare disease community can really share a lot of their knowledge and experience that they've gained with some of us that have younger kids and just haven't been advocating and in the community for nearly as long. Anyway, I love this podcast so much. And I really love being able to work on it, and sharing it, you know, for all of us to be able to connect. Thank you so much, Madeline, and I can't wait for season seven.

 

Madeline Cheney  30:59 

Thanks, Alyssa. I love you. And I'm so grateful for you. It's just magic to have someone taking on the tasks that I was single handedly doing for so long for years, two years. Yeah, I loved hearing your thoughts about tackling sticky situations. It is always my goal not to shy away from controversial topics or things I know there are going to be people that disagree or might be offended even, and that's something that I try to take really seriously because I never want this podcast to be somewhere that causes hurts or ever makes any listener feel shameful or you know less than and not enough for your child. I always, like the number one goal is to help you feel empowered and to feel like enough and to know you're not alone and to find comfort. And so hearing that you feel like I am able to do that in a way that doesn't offend is just like, it's so reassuring, because-- Okay, here's a little side note, here's a little background on Maddie. So I like have kind of a reputation in my life of kind of not having a filter sometimes and saying things just how they are and offending people. It's something that I've been like working on on a personal level. And so tackling these big scary episodes, I'm like, "okay, bring it like I'm ready to tackle this, but also oh my gosh, like, I really hope I don't offend anyone." So anyway, there's a little background on how much that means to hear that from you Alyssa because I really, truly don't want to hurt anyone or offend anyone in these topics.

 

Brittany Steitz  32:32 

So wait, Madeline, remind me how you and Alyssa got connected.

 

Madeline Cheney  32:36 

So okay, we've been connected on Instagram for a long time, like ever since she became a listener. So really towards the beginning. And then it was actually on this Facebook group for podcasters. So I didn't know she was a member of that. I didn't know that she was an audio editor. That's what she does for profession. Like she...

 

Brittany Steitz  32:54 

Amazing!

 

Madeline Cheney  32:55 

...produces episodes for podcasts, and so on there. I was, like, "I'm looking for an editor. Like, what do you guys do to like, find a really good editor? I'm so protective of this podcast, like, it has to be the best." And so she saw that and messaged me was like, "hey, like, this is what I do for a living like, do you want me to do it?" So it was just a match made in heaven. I was like, this was so meant to be because to have a listener who knows the types of topics that we tackled, that has the experience of being a parent and like even just knows my style, like it was just so awesome.

 

Brittany Steitz  33:27 

I was about to say I just think it was meant to be. I'm just so glad.

 

Madeline Cheney  33:35 

Yeah, when that happened, I was like, "Okay, thank you universe. Like, I accept this wonderful gift. I accept." It's been amazing. So...

 

Brittany Steitz  33:42 

I love that.

 

Madeline Cheney  33:43 

Anyway, thank you Alyssa so much for sharing and for all you do for the podcast. Okay, so we're gonna move right along I feel like we could talk forever about all this stuff but we are going to jump into kind of behind the scenes. So with season six, as I mentioned, that has been a huge learning experience of working with sponsors, mostly positive I will say. I think like the biggest thing is just like how time consuming it's been to kind of take off the hat of content creator and put on a hat of-- what is that?-- I guess like kind of entrepreneur of like working with companies for them to partner with me to produce these episodes. But then also like kind of advocate. Like, I really feel like I'm kind of going to the Britney and I together are going to the ropes for you guys as you know this community to be like, "hey guy's like this podcast is very important. It's very needed, like this is impacting individuals. Like those three parents we just heard from and it needs to stay a thing and we need funding for this. This is the only way we get funding, like this is not you know, I don't have like life coaching that I sell on this. I don't have courses. This is it. Like, right, like this is the thing." And so to have them jump in and support the podcast and by extension, support each one of you, has been such an honor, like, it's been so amazing to work with these companies and to hear how much they really do care about each one of us. It's awesome. And then to see, you know, on the practical side of that, like, great, now we have funding, like now I can pay Alyssa to do more for the episodes. So I'm able to focus on, you know, the content creation, and just things like that. It's just been, it's been amazing, it's been so amazing.

 

Brittany Steitz  35:27 

One of the most, the things I've been most excited about is 1.) really getting to know the people behind the companies. And that's been really neat, because it kind of humanizes some of these brands that we've been getting to know. And then also, it's been really powerful to see how they're sharing their content with their own communities that they work with both internally and externally to patients, but also with their employees. I think that has been really inspiring, because, you know, within every company, and this is me, like putting a corporate hat on for a second. But within every company, there are medical families who and it's been really cool to spread the word of the podcast, and to bring some of those conversations that they're sponsoring to light even within their corporate walls. So I think that's been really exciting. And I think we have a lot of really exciting ideas for growing the partnerships in season seven. I'm really excited about some of those potential ideas and seeing how they shake out. And I think we've kind of just again, scratched the surface of these partnerships. And I cannot wait to see where it goes. I think there's a lot of great stuff to come.

 

Madeline Cheney  36:45 

Yeah, totally. I think, yeah, this season has been such a learning process. And we have like, had epiphanies of like, okay, here's how we're gonna do this going forward to really protect my time, and my creative energy. To be honest, I really enjoy working with companies and talking to them about...

 

Brittany Steitz  37:08 

You're gifted. You're gifted. I mean, you are. I mean, I think you're really good at connecting these dots between the podcast and the companies that I think is really important to both the listeners and to the podcast, and to the sponsors.

 

Madeline Cheney  37:22 

And it's been fun to like kind of grow. I don't know, like kind of, since I was a kid, I've always been like, "I want to start a business." And so it's kind of fun to be like, wow, like the podcast like, I can, I can exercise that within there. And really, like I said, like as an advocate, I think that's what gives me so much fire is to be like, these parents need this. And I'm not going to peddle them to sponsor every episode like that I'm not okay with doing that. They need this. I'm burnt out, like we need to figure this out. I think that's been really awesome. But like we have had some exciting things that we're going to put into effect for next season to create even longer term partnerships with companies and with organizations, but in a way that also protects my time and my creativity. So I can really throw all of that into the episodes and making the best content possible for each of you. So that's kind of our yay for sponsors. And then also, to have two of the last episode sponsored by listeners was such an honor because of all the bandwidth it's been taking to like work with these companies as much as I liked it, I got really behind on episodes, and by the end of it, I told Brittany, I was like, "Brittany, I don't even want any more sponsors for these last few episodes. I cannot handle that." Like I have just like tuck my tail between my legs and get these episodes done. So then I was like well shoot we need to pay for like editing and stuff. So I opened it up to those of you who follow me on Instagram and asked for help in funding those episodes. And just like I expected so much support each one with a nice little note with the monetary donation I mean like literally each one of those just feels like a huge hug. I'm just like, it's hard to describe how good that feels to feel that kind of reciprocal support of like yes, let us help you make this. So thank you to each one of you who did that. And if you are interested we've had, I had a listener ask, "how can I like be a monthly donor?" And I'm like, awesome, like thank you for reaching out and asking me that, like a plus. But if that's something that speaks to you, and you want to like be a supporter on a monthly basis, and that's something you can do financially, I'll have a link in the show notes but on buy me a coffee I like added a feature where you can become a monthly donor it's like $5 a month if you feel like it or $10. And Brittany and I are going to kind of be formulating if we can handle doing some perks that go along with that like some thank you, additional of it. But for now, it's just like a thank you. You're awesome. I love you, for me.

 

Okay, so another, behind the scenes with the podcast is our growth in listener base. So each one of you who have been added on throughout the season, that has been so fun to see that just just see the momentum of the podcast pickup in that way. And like, I think like, you know, the numbers are really motivating to me, maybe it's the entrepreneurial side of me where I'm like, oh, let's get those numbers up, let's get those numbers up, because I know, you know, we make the podcast episodes, it's the same work to us, you know, to reach 1,000 people as it is to 100,000. And so I'm like, why not get this to every person possible? But then at the same time to know, and acknowledge that, like, each one is a person, each one as a family that has impacted is so humbling. And so to see those numbers climb, I really have to sit back and think about it for a second, I'm like "Mads, these aren't just numbers, like these are humans that are listening, and coming back for more and being impacted by hopefully, you know, in a way that is really meaningful." And so for each of you that have joined our community, throughout the season six welcome, like, I'm so happy to add you to our community. And just so humbled by the people who have been sharing the podcast and getting it out there in one way or another. And, you know, if that's like, the reason that you joined us, I'm so grateful to all the shares, because that really helps us in a way that we couldn't do on our own. The authenticity of "hey, I listen to this episode." And, "here are my thoughts about it, go listen to it," or, you know, "here's this podcast that I love, go listen to it. It's helped me in XYZ." You know, I think you know, those types of shares, every time I see those, it's just, again, it's like a hug. It's like, okay, like, yes, I need to keep doing this. And just knowing that it's getting the podcast out there to families and people who may really need it. You're the other member of the team that like is irreplaceable. That being said, Brittany and I have ambitious goals for listeners. So back, like, it was like the summer, so it was like six months before the end of the year. I was like, "Brittany, I have a goal. And I want to double our listeners by the end of the year." So for context, that means like going from like, at that point, the podcast had been around for two years and to say, "okay, the growth we've had over the last two years with listens, I want to double that within six months", is like, you know, pretty big and audacious. But, you know, we're almost there. And so that's just another ask for you to keep sharing and in any way that you feel like you should share whoever you feel like you should share it with, because let's get there, like, let's get to 100,000 by the end of the year. I think that'd be so exciting.

 

Brittany Steitz  42:50 

That would be amazing. I think we can do it.

 

Madeline Cheney  42:53 

Okay, let's talk about upcoming episodes between seasons six, and seven. So, as many of you know, like, we typically will rerelease episodes between seasons, and I'll just be like, I'll, you know, we have a lot of new listeners, I want you guys to go back and listen to this, because I think it's really important or is really popular or whatever. But this time, because between the seasons is during the holiday season. There's a lot of seasons going on here, but Brittany, you-- you're the mastermind of this. Brittany had the idea, she was like, "let's make new content. Like, let's make episodes that are relevant to the holiday season, as an extra support for families as we're going through the holidays because..."

 

Brittany Steitz  43:36 

The holidays are complicated. I mean, okay? There's some good moments. There's some hard moments. There could be years that are good. There could be a year that's bad. And I think it's a season that's just packed with emotion. Could be past trauma, could be celebration. I think it'd be so cool to talk about it. Because I think if we're in those moments, it'd be really great to hear about other people in the community in those spaces, good or bad.

 

Madeline Cheney  44:08 

Yeah, totally. And so that's what we're going to do, we're going to create three special episodes that are between seasons that are holiday related. In each of these episodes are going to be kind of the same format as the family planning episode and the family support episode, where I'm going to join up with Amanda Griffith-Atkins. Yay again, good to hear from us, again.

 

Brittany Steitz  44:34 

Love her!

 

Madeline Cheney  44:34 

Right? I'm like, I can't get enough, man.

 

Brittany Steitz  44:36 

No, can't get enough. Anytime, come on.

 

Madeline Cheney  44:38 

So on Instagram, we collected answers from each of you on the various topics so that we can include your insights in those and that's really important. Again, like these are topics that have a lot of angles and you know, we were really happy to include lots of different angles and lots of different pieces of comfort and advice from you know, that we can really get and from each other as a community. So those three topics are the first one will come out the week before Thanksgiving. So right, as we're going into this holiday season, and that episode is really about, like, "Why? Why do the holidays suck sometimes for parents of medically complex kids?" I have a lot of opinions about that, which you can hear in that episode. But we're going to talk about why it's hard. Like, what, what about it is hard for us? And then, you know, we really discuss ways that we can show compassion for ourselves and set boundaries, you know, with family members, because that's often a huge part of that of like, "Okay, this is really hard. Okay, my family doesn't understand this, because they haven't gone through it themselves. How do we set boundaries? How do we talk to them about this?" So that's a really, I think that's such an important episode. I'm so excited for you guys to listen to that one.

 

Brittany Steitz  45:49 

I think it's critically important. I think it's like one of the, it's the fundamental wave that keeps ebbing and flowing, I think, throughout your journey.

 

Madeline Cheney  45:57 

Yeah, it comes back every year.

 

Brittany Steitz  46:00 

Every year.

 

Madeline Cheney  46:01 

Yeah, so mark on your calendars for that one, that one's going to come out week before Thanksgiving. And then our second one will release December 8th, you know, we're kind of in that Christmas season, I don't wanna say Christmas, because I know not all of you celebrate that. But you know, kind of like in the thick of all, all the holidays. And that one is all about when you're impatient in the hospital with your child during the holidays, or you're at home, because you cannot risk your child getting sick. You know, it's really hard to feel left out or to be like, well, here we are, again, or for the first time, but in the hospital and we want to be home, or we want to be with our families. That really is about, first of all solidarity, because that's really isolating a lot of people don't understand what that's like. But then also, we have a lot of tips and advice from families who have gone through that and ways to get through it. And ways to even make it maybe kind of positive. So I think that's a really important one. I hope that you guys tune in for that one. And then the third one will release the first week of January. And that's kind of like a New Year's talk about goals and words and reflections of the previous year, but like medical parents style. So I'm excited about that, too, because I think it's great to hear from each of you and what your hopes and goals are for this upcoming year and what concerns you, I mean, like all the things I'm like, "Oh, this is so relatable." Like, I'm sure that so many of you will be able to relate with that. So yeah, so stay tuned for those.

 

Brittany Steitz  47:29 

I'm so excited to have these conversations in real time of like the calendar year. I can't wait to hear everybody's, all the listeners feedback and participation in the episodes. And I can't wait to like see how the Holiday Mini Season turns out.

 

Madeline Cheney  47:45 

Yeah, because it's very different than what I've done previously, because it's always been my intention to make these episodes very evergreen, which is kind of ironic, and like Christmastime, but like to make them like the very evergreen so that they are timeless, so you can go back to it. And a new parent can find it, you know, an episode five years later, ten years later, it's still relevant. But I do think there's a lot of value in topics that are very timely and relevant to where we are specifically, and especially these types of topics. So I love these episodes, and I cannot wait to share them with you. And that'll be kind of fun, we'll have new content coming out between season six, and seven.

 

Also, mark your calendars for January 26, because that is when we are going to release our kickoff episode for season seven. And you guys like seriously, I feel like you know, my creativity is really taking off and like I'm figuring this out like, Okay, what do they want to hear? Let's deliver that. Just you wait for season seven Because I feel like, yeah, here we go. Like, let's get going on this. All the episodes are recorded and we're working on those. And the topics are things, a lot of them come from messages I've gotten from you guys and saying, "Hey, is there an episode about this?" I'm like, "No, but let's tackle that." So I'm very excited that that theme will be all around medical and therapy interventions, and advocacy. And you know, just disability really like focusing in on that in our children. So it's a doozy. And I'm excited to kick that off with you guys and explain more about that theme and what's coming your way and to have an in depth look at that theme and sneak peeks into the first four episodes.

 

Brittany Steitz  49:31 

Can't wait!

 

Madeline Cheney  49:33 

Yay! All right, so stay tuned for those holiday seasonal episodes, as well as the kickoff for season seven. Thank you so much, everyone, for joining us in this kind of celebratory and reflective episode and thank you Brittany for joining and making this episode way more fun so I'm not just like talking to myself about this.

 

Brittany Steitz  49:53 

I'm so happy to be here. Thank you. I'm just so thrilled. I hope I can come for every season finale.

 

Madeline Cheney  49:59 

Yes, it's gonna be a thing. I love it. So check out the show notes for links to the episodes we mentioned and also for Instagram handles for the three parent listeners that you heard from, also for Brittany and for me if you want to follow us and we hope to see you guys there. We will see you guys next in Episode 108 for the seasonal in between episode. See you then!

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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a

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68: Dipping My Toes into Educational Advocacy

 

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