Ep. 72: Season 4 Finale




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Another awesome season come and gone! This episode is in celebration and appreciation of the meaningful episodes, guests, and listeners of season 4.

In this episode, I share a few behind-the-scenes of the season (with an exciting update!) and reminisce as we listen to the sixteen episodes condensed into a two-minute segment. I also share and respond to three audio submissions from parent-listeners as they speak of the impact the podcast has had on them, and their favorite episodes of season 4.

Episode Transcript

Madeline Cheney  0:00 

Hey, you're listening to The Rare Life. I'm your host Madeline Cheney. And I am so full of gratitude for season four. And I cannot wait to celebrate that with you today in our finale episode, per tradition, we will do that by doing a quick run through of the episodes from season four. So we can kind of reminisce together, it's about two minutes long. And then we will hear three parent takeaways. They share how the podcast has impacted them on a personal level, and about their favorite episode of this season. And before we jump into those parts of the celebration, I do love to reflect on this past season, and what came up kind of behind the scenes. And when I was reflecting on this, there were two obvious ones. The first was falling extremely behind on episode production. So some of you know, I try to be 12 episodes ahead. 12. Part of that is my I don't know my need to be in control, I guess. And I love structure, but also because things come up both in my personal life and in that of my guests. And so there are a lot of cancellations or postponements, because you know, like hospital life, appointment, life medical life. So being ahead has lowered my anxiety a lot. And I think it's a reason I've been able to be so consistent in the episodes. But during the summer, I was doing lots of fun things like camping with my family, and going to a brother's wedding and things like that. And so the podcast kept getting pushed off. And I was working on it, but not at the pace I was before. And I will say that part of that is the fact that I'm still dealing with some trauma from recurrent miscarriages. And that has sapped a lot of my motivation that I had before. And I'm working on that. So it's funny to me, because I am remembering a time where I was like literally talking to my therapist, or how I was so stressed because I was only eight episodes ahead. And that truly did filling your anxiety. But then right now, I'm down to two episodes ahead two that kills me. So you know ever since end of the summer, like in August, I've been just been trying to claw my way back. And it's been really tricky. I have a solution in place to kinda fix that that I’ll announce at the end of the episode. But that also leads me into the second kind of big occurrence for this season. And that is gaining interns and I cannot express how awesome this has been. So I was connected with two high school interns, one that is my graphic designer and the other one in charge of marketing, Gabi and Kaylee. And you know, that was a lot of effort upfront to get them all up to speed on how to help me with the different tasks that go into the production of the podcast and the different episodes and things. But has been amazing, because a lot of the legwork has been taken off and I can kind of delegate those things. And then you know, review them and make sure they're, you know, up to par or whatever with my current branding. But like also has allowed me to take a step back, and really have more vision for the podcast. And so I'm really excited because there have been some things in the works. And I think it's just improving the podcast overall. And I continue to see those results, I'm sure. So as many of you already know, I recently started an account with a platform called buy me a coffee. And that just allows audience members to make small one time donations like $3, $5 whatever you can. And right now I have the goal set to buy these lovely and helpful interns, a small Christmas thank you gift. So if you feel able to do so please click the link in the show notes to make a contribution. It's easy, and it's fast. Thank you so much for helping me show our appreciation for their hours and hours of work. Alright, so now more to the content of the podcast. Let's listen to Season Four summed up in two minutes.


Various Guests  4:25 

Next thing you know we're having issues with swallowing and we're aspirating and we're just going down this whole thing from a cold and if you the mom, the caregiver thinks that something is wrong. Something is probably wrong.



Being who I am as a special needs sibling. I was like, let me go see what the parents want. Like let me look and see because if I can make mama happy, we're gonna be all good.



It was thrilling to see his sweet eyes. But we wouldn't know for months that he couldn't see us back.



We said, We're done. We're gonna take him home, and we're gonna figure it out. And I will say, it was the best decision we ever made, because he thrived when we got him home. As we stayed there longer, we started learning how you can really kind of dive in and feel like you are part of their team.



It was hard, all the medical complexity. But the hardest part really was finding out all of the things that you have to go through for health care financing for insurance to get these things paid for.


And that was really, really disorienting for me to feel those negative emotions after finding out this, like, unbelievably good news.



So that I went to see a specialist. And in that appointment, the energy change. pulmonologist said, Take her outside, go for walks, she needs to feel fresh air, obviously do activities in a way that's safe, but please continue to live. And so that planted the seed.



I work with medical students and residents and fellows. And a common question that I get is, is it okay, if a family sees me crying? And I think that question just says volumes about medicine, we are crying.



But I would say I was surprised at some of the emotions I had going into it. It was very, very reminiscent of the early days in the NICU.



They were so closed minded and ignorant, I honestly will say ignorant, because they couldn't imagine that a life different than theirs would still be a life worth living. He doesn't have special needs, she has needs just like every other child does. And she deserves to have those needs met.



I've helped babies when their parents gonna be there when he passed away. And that's really hard. But it also there's so much privilege that goes into my job.


Madeline Cheney  7:17 

So many awesome episodes and guests. I'm so grateful. And now for my favorite part of finale episodes and that is listener takeaways. I asked three of my lovely parent listeners to share the impact of the podcast and their favorite episode from season four. And they made me feel all the warm fuzzies. So a huge thank you to Lexi, Alyssa and Jessica. First up, we have mom and listener Lexi.


Lexie Emory  7:50 

Hi, Madeline. This is Lexi Emery, rare mama to Harper Emery who has Turner Syndrome. And I wanted to share today why I listen to this podcast. And for me one of the greatest skills I've learned in this journey with my daughter so far is learning to fight for what you want in that can be, you know specifically for your child in terms of access, or things that they need that will help them in their journey. But also for me, it taught me how to fight for what I want. And for me, I really, really wanted and craved to community and the feeling of being understood. And that's why I found podcasts like this. And this one specifically just because I was searching for that community. And I really feel like I fought to find it. And I definitely found that here. It has just given me an amazing perspective. I feel like each episode, I'm able to take different parts from each story and apply it to either my situation or have just deeper empathy for other people's situations. And I think through stories and resources, this podcast has been able to provide that for me, and I think it is absolutely invaluable. And then last but not least, my favorite episode from season four is episode 67 with Dr. Dominic Moore. I absolutely loved this episode because he was talking about how he wishes that he could give parents a look into the future when they're in a really tough place with either diagnosis or early on and be able to show parents how capable they are. And I just I adored that because I wish I could have done the same thing for myself. I remember being in the NICU with my daughter when she was having her due to placed and being sent home on oxygen and we had just been in the NICU for almost 100 days and I relied on these nurses for everything. And I remember thinking like how am I going to do this? How will I know she's okay? How am I going to do round the clock do two feeds and Make sure her oxygen is always on and all these unknowns about her Turner Syndrome and I was just so terrified. And I wish I could go back and like, simultaneously shake myself and then hug myself and just say, Lexi, you can do this. You can be an incredible mother to her. You just need to give yourself grace in time. And I'm very happy to say almost three years later that that is exactly how I feel. And I am so thankful you shared that on episode 67. Season Four, thank you so much for everything you do Madeline.


Madeline Cheney  10:37 

Lexie, yes, fight for what you need and want. I'm so glad that you searched for that community and that you found it here. You deserve support and fighting for just as much as your daughter does, whose little noises in the background are adorable, by the way. Not gonna lie. So episode 67 was far more popular than I expected. I was afraid people would see the word doctor in the title. And assume it was like some boring conversation about technical stuff or something. But you know what, it resonated with so many parents just like it did for you. And, you know, he really did have so many important things to share. And I love how you phrased that you wish you could go back in time and quote, "simultaneously shake myself and hug myself." Like, yes, totally summed it up so well. I so appreciate your thoughts and perspective on this episode and the podcast as a whole. So thank you, Lexie. Alright, next we have Alyssa.


Alyssa Poskarbiewicz  11:43 

Hi, I'm Alyssa from Ohio and the mom have a five year old son and a one year old daughter with down syndrome. When our daughter was born with life threatening medical complications, we were shocked. And then the diagnosis came and it rocked our world in the life we had imagined. I found the Rare Life Podcast around the same time our daughter came home from the NICU. It's funny because I remember during our time in the NICU, there was one medical professional that asked us if we knew any parents of a disabled child, or anyone that was disabled. We didn't, we had zero exposure to this community. And at the time, I didn't really think much of it, because we have a great support system of family and friends. And I really thought that would be enough. However, once we were home from the NICU, that's when the isolation really started to set in for me. It was lonely, and I realized that I needed support from families like ours. This podcast has given me a space to feel connected, to feel heard, to feel seen from people who actually get what this life looks like. And everything that goes into it. I'm learning so much from some of the most beautiful people and stories. And although it's a community I never wanted to be a part of and grateful that I am. So thank you, Madeline for creating the space for all the complex emotions of this life. Feel safe to feel. I've truly enjoyed and have taken so much from each episode. During the season, Vanessa story about her daughter IV, and accessibility and ableism really resonated with me. Because that was me, I couldn't imagine a life for our daughter that she couldn't hear or see or walk. I never recognized the internalized ableism I had, because I never had to directly face it. And I spent this past year, unlearning and learning and can see the disabled and were community very differently. I know now that my daughter's diagnosis and limitations are not what will stop her from having a great quality of life. It's the inaccessibility and systemic ableism that is the barrier. And I love when Vanessa says that this generation has the ability to advocate and create true inclusivity


Madeline Cheney  14:07 

Wow, can I just quote you real quick? She said "I never recognize the internalized ableism I had because I never had to directly face it." Yes, so true. And it's such an honor to be learning and unlearning so many things right alongside you from amazing guests like Vanessa and I'm so glad that you feel of the safety of this space to do all that learning and unlearning right along with the rest of us. Thank you Alyssa for sharing how the podcast has impacted you. Now last but not least, we have Jessica


Jessica Loey  14:47 

I listened to the Rare Life Podcast because after my son Daniel was born, it was very evident very quickly how isolating it is to have have a child who has differences. It's so lonely. And even those closest to you can't understand and even your spouse who's going through it with you, sometimes is in a different place than you. And it was. So I brought so much comfort and peace to my mind listening to these people tell their stories of what they have experienced what their child has experienced. And it gave me hope that someday I would be in a place where I could eloquently speak of our experiences. And I feel like it helps me to advocate for my son more as well. And that is why I listen. The episode from season four that resonates with me the most is when you're speaking about Kimball's blindness and his vision impairment. My son also has a visual impairment and is completely blind in one eye, and has limited vision and the other and when he was really little, and we were learning so many things about him. Health wise, it was one of the things that was hardest for me to accept. I had so many of the same feelings that you expressed throughout that episode of How do I even know to parent this child, which now I last that ever you just learn your child. And it's not really that different vision impairment, and I feel silly, sometimes forgetting that he's visually impaired, which sounds crazy, but I'm sure other parents feel the same way. But that episode, I just bawled while I listen to it. Because it's something again, I feel like you don't really understand until you're living it. And I was listening to somebody else who is living this, you know, trying to navigate this world with their child lacking vision. I remember driving home when we got released from the NICU, and it was the most beautiful day. And I sat there and just cried, and I was like, will he ever get to experience the beauty of the world, and he's only 19 months old. And I know, he knows beauty of the world. I already, even though, you know, we've been locked up most of the time since he's been born with COVID and everything. And I just I really appreciate it all you shared in that episode, and I think a lot of others do as well. The podcast has affected our journey by helping me to realize that some of the emotions, I feel that I had a hard time verbalizing that there are many other moms families going through those same things, and that it's okay to feel all those things. And then I should not feel shame for them. And, again, we'll be okay. And it's okay to go through those phases and process those things. And life goes on and you move forward. But I feel like those early days with your child, it's very easy to feel a lot of shame for the different emotions you feel. And I feel like through this podcast, you hear everyone talk and share those very hard emotions, and they share them so well and gracefully, and you hear those things and you realize I'm not alone. And I can get through these and my child will get through this and things will get better.


Madeline Cheney  19:00 

You know, Jessica, it's funny, because you speak of the hope you have to speak of your story with the same eloquence of guests. But I hear that in you already. Like it's already there. And I think that's really awesome. I think it's easier for other people to recognize that in you. And thank you so much for sharing your experiences. So vulnerably it's kind of ironic, because when I send out these solo episodes, expressing these deeply personal experiences, like the blindness, one, it's usually something I haven't shared very much before. And I actually feel alone in it. But then to send it out into the world and hear all these me too's and feedback like yours helps me feel so much less alone. And I know it seems kind of upside down. But anyway, thank you so much for bouncing some of that connection back to me. I'm so glad that one resonated with you. There's something about what you said in there also, that really caught my attention. You talked about how the episodes have helped you to remove the shame from the various emotions and experiences you've had in regards to your child with disabilities. And that is one of the most important goals that I shoot for, to remove the guilt and shame by talking about it and helping us know that we're in good company like we're not the only ones feeling this way. And I do think that, that helps us to move forward in a healthy, compassionate way. So that was seriously a high compliment. I'm so glad you felt that. Thank you. Thank you for this heartfelt message. You can find each of these lovely ladies on Instagram, if you want to connect or follow them there. I'll put links in the show notes for that. So you may have noticed that each parent talked about the community and connection that they craved and subsequently found in the podcast. Honestly, I think every parent needs that support. So I encourage each of you listening to share the podcast in some way, perhaps on an individual level by thinking of someone who could use this type of connection and support and sharing directly with them that's awesome and meaningful. Or you could share in a broader way, like on social media. Heck, I have found a lot of reach just by sharing it with my son's therapists and doctors and asking them to share with other families. Because we know better than anyone how crucial feeling seen and heard is, and I don't think that therapists and doctors necessarily understand that need as much as we do. And so I think it coming from a parent who has been impacted by the podcast could be really powerful and helping them you know, feel motivated to share this with their families that they work with. And it just doesn't get easier than hitting play on your phone and listening while you I don't know, wash dishes or drive somewhere. So please, please share it. And a huge thank you to those who have been sharing it. I'm seriously grateful for your help in reaching more families.


All right, another awesome season wrapped up. It just a reminder, if you want to donate towards the appreciation gift for our two hardworking interns, please click the link in the show notes.


And now for my little announcement regarding the all-encompassing stress of continually clawing and scrambling to catch up in episode production. In a moment of euphoric clarity and self-compassion while sitting in a mindfulness class, I decided to grant myself a longer break between seasons than is typical. So instead of attempting to run up the down escalator, I’m choosing to pause the escalator, and instead walk calmly and purposefully. And you know, sidenote: I encourage you to look at YOUR life with a little compassionate curiosity. Maybe there’s something you can do to prioritize your mental and emotional state too. It takes a lot of bravery to do, but it is so worth it. We are so worth it.

So, instead of one week between seasons, there will be SEVEN. HOWEVER. this is no reason to stop consuming episodes. There are a whopping 71 episodes to enjoy between now and then. And each of those seven Thursdays, you will find a teeny tiny mini episode, in which I’ll recommend an archived episode to go back and enjoy. Many of them will be episodes that are kinda hidden gems, with fewer downloads but amazing content. So, I hope you still tune in each Thursday.

And. I hope you enjoy your holidays! Truly.

SO. Join me on January 6th to kickoff Season 5. In that episode, I will introduce the new theme. And I'll share extended clips and insights into the first four episodes of that season. It'll be awesome. Don't miss it. See you then.

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy