Ep. 17: Season 1 Finale




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Well that’s a wrap! Reminisce about the amazing episodes from Season 1. We’ll listen to the season in the form of short audio clips, and I’ll share feedback about a few episodes from Season 1 from unexpected (but amazing!) audience members.


Link to my episode in All About Audiology: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/

Facebook Page for The Rare Life: https://www.facebook.com/The-Rare-Life-Podcast-100145211681157/?view_public_for=100145211681157

Follow me on IG here: https://www.instagram.com/the_rare_life/

Episode Transcript

Madeline Cheney  0:01  
Hi, you're listening to the finale episode of Season 1 of The Rare Life. I'm your host Madeline Cheney, and I'm very excited to celebrate this first season with you. I would like to thank each of you for a hugely successful first season. And for all the kind of messages; it means the world to me. To start out this finale episode, we get to reminisce about all of our awesome episodes from this season. We'll start with Season 1's story episodes from parents. 

Alyssa  0:33  
"William is sassy. But yet doesn't say anything. But is still sassy."

Emily  0:41  
"That's, I think my biggest worry for her is her future and how hard and challenging it might be. But she shows us every day that she can do it. She's strong." 

Kari  0:54  
"Nothing has been very normal around here. But that's cool. It's cool."

Shawn  0:59  
"And then as soon as you say 'chromosome', they're like, 'Oh, so like down syndrome!' And I'm like, 'No.'"

Madeline Cheney  1:08  
Season 1's awesome professionals: 

Lisa  1:10  
"You don't have to be the therapist. You are mom and dad." 

Dr. Saperstein  1:16  
"And in this case you do need to bring all that guardian energy. Come and get it! Like, this is the time to bring out all of that energy and fight for your kid. But like save it when it's a kid on the playground who doesn't get it." 

Angie  1:32  
You'll always have that next milestone in mind. Celebrate the milestones that they're doing now and don't give up."

Kimberly Hirte  1:39  
"Your child should be more motivated to participate in the mealtime and have a better response to eating because they're gonna feel hungry." 

Madeline Cheney  1:47  
Season ones solo episodes: 

Madeline Cheney  1:51  
"It's really really hard to to watch your child struggle to breathe." 

Madeline Cheney  1:59  
"And now it feels more like they are educated advisors to me." 

Madeline Cheney  2:04  
"I love his feeding tube. I hate his feeding tube. But I love his feeding tube because it kept my son alive." 

Madeline Cheney  2:12  
And Season 1's special topic episodes from parents: 

Alyssa  2:17  
"I've been questioned like, 'He doesn't have a quality of life, he doesn't do anything he doesn't walk.' And I just don't want him to be measured by his abilities. I don't want to be measured by my abilities. No one does."

Emily  2:29  
"'Small', 'tiny', all these words that people are using to describe her and I just...I got worried that...How is she attaching those things to herself?"

Kari  2:40  
"These people come in and they, you know, change your life and they change your child's life for good and help you kind of navigate waters that you never thought you would be navigating." 

Candace  2:51  
"No one thing has been the ideal form of communication for him. So he uses several forms of communication, which is intense as a parent."

Madeline Cheney  3:04  
I have learned so much from each guest! And I've been so privileged to have a front row seat to all these amazing people. Each one has been inspiring in their own way. I have three takeaways from season one to read. Each review is from different kinds of listeners which is so cool. One of the amazing, surprising things about this podcast has been how many listeners that have been have reached out to me that are not special needs parents. This is very much geared towards those special needs parents, and it's been so neat to see it benefit other people too. The first category of unexpected but awesome listeners are professionals wanting to understand the parent perspective and be a better professional because of it. And I think that is awesome. So I have this message to read from Adrienne: "Hi Madeline. I love your podcast. I'm an audiologist and first heard you on the All About Audiology podcast. (I'll put a link to that in the show notes.) Then I went right to your podcast and have listened to every episode. I am actually a pediatric audiologist and I loved hearing your perspective on everything but especially your experience of diagnosis in the NICU. I have listened to all of your episodes as I think it is so important for professionals to hear from parents and learn from their experiences." Adrienne, you are awesome and all the professionals like you that are trying to be more understanding more empathetic. I think that is so cool. My next piece of feedback is from Seeley A. She says, "Oh my goodness, I loved Episode 13 about Kimball's feeding tube. I'm sitting here at 2am pumping milk, listening to your podcast, and feeling so seen. Although my daughter does not have any special needs, because she was born so small she started off with an OG feeding tube. I decided to exclusively pump. I pump about 80 ounces a day, which I can't complain about when there are so many moms trying to make enough for their child pumping. An oversupply really is its own kind of labor of love though. Getting Oakley to eat by mouth was stressful while she was in the NICU. Visiting for cares and making milk for her seemed like all I could do to really connect with her, and she hated trying to eat by mouth. It felt like it was more painful than comforting to her. The nurses would warn us that she would burn more calories fighting the feeding than she would gain from the milk and get too exhausted to eat. We wanted her to learn to suck but didn't want to exhaust her either. Oy. Luckily all that was a short part of our journey with her and she's eating and gaining weight now. Thanks for an excellent late night listen." Seeley. This kind of review means the world to me. I'm so happy that you feel seen. That is a huge motivator to me and a huge purpose to this podcast; parents who feel they must be the only ones battling things can hear their own story and another person's story. And it truly is my hope that we can find comfort in each other's company in these hard things. My next piece of feedback is from listener Megan B, who is not a parent at all, which is another audience I did not expect in this podcast and another group that I think is so awesome. I think it's so awesome that you guys are interested in hearing other people's stories and different way of life because it really is a whole different world. And I think that is so neat that you're interested in this. Megan says, "I can't remember which episode it was exactly, but it was the episode you were talking about taking charge of Kimball's care and were you asked if you should wipe him or not in the NICU (which is Episode 9 by the way). That got me thinking. The change is so different for everyone whether they are experienced parents or not, that it seemed like at first you were scared because he was different. And it made you question everything. But after a while, it seemed like it almost clicked for you. Like, 'This is my son and I'm the ultimate one responsible for him.' I would never think that someone could go through those feelings of uncertainty if they were already a parent. It seems like it should be the 'I got this' feeling all the time. (I wish!) I always figured that parents that have special needs kids had it different, but I guess they don't." Yes. I don't know if I speak for every special needs mom, but it is a whole different rodeo when your child has different needs than the typical baby. Thank you Megan for being interested in a different kind of journey. You're awesome. So as I mentioned in the beginning of this season in Season 1's kickoff, season 1 is more themed on children's therapies and their diagnoses. Season 2 is all about our personal journeys and how we have been affected by our children and the struggles that they go through. I have some amazing guests to share with you in Season 2. Season 2's kickoff episode will be released in three weeks, October 15, in which you'll get a sneak peek into Season 2's episodes. I can't wait! See you then.

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Hex Code

68: Dipping My Toes into Educational Advocacy