Ep. 1: Season 1 Kick-Off

Madeline Cheney  0:00  
Hi, welcome to The Rare Life. I'm Madeline Cheney. And today I am happy to kick off Season 1. In the preface episode, I explained a lot about the seasonal theme structure. So if you have not listened to that episode yet, I highly recommend going back there so that you can have a little more of an idea of how this is going to go down.

So for Season 1, we have the theme of your child's therapy and medical team and their diagnosis and really more child centric. And so this really guides special topics, it guides the professionals that I have on, and it guides what I'm talking about in my solo episodes. And the story episodes, they really are they kind of dance between all the different themes, it's, they're just really real and we just really talk about their child, which is awesome. So I have some really great parents on that for this season. Some of the special topics we cover are things like just determining your child's quality of life, how to educate others about your child's diagnosis, communicating with a nonverbal child, and building your child's therapy and medical tribe. So these are some really great special topics that kind of fall loosely under that theme. It also guides the professionals I have on, so I have a couple of Kimball's therapists. I have a professional talking about advocacy and giving us a really concrete guide for that. And so it's just really great. It also guides my solo episodes and what I choose to talk about. And so I am going to give you a sneak peek into the next four episodes and these will be also reoccurring, (I love structure, can you tell I love structure).

So we will have a parent episode where they share their story. And then the following week they will share their special topic and then the professional will be on and they will teach us and then a solo episode by me. And then we'll just kind of cycle through back through another parent and their special topic and other professional me, so you can really know what to expect. For our first parent episode we have Alyssa Reidhead and she is awesome. She shares about her son William, who is four. And they told her he would not live after being born. And so she just really has a great story about unconditional love and about connecting with him despite his lack of hearing and vision and being able to walk. It's just really great. And she is the one who gives the special topic about quality of life. And that is another fantastic episode. I'm really excited. I learned a lot and I'm excited for you to learn a lot also.

And then the following episode is by one of Kimball's therapists, Lisa Rawley, she's fantastic and she kind of gives us a general pep talk about in home therapies and she has a lot of great advice in there. She's just such an encouraging person and you need to listen to that one too.

And then the next episode will be my solo episode and I will be sharing a lot more about Kimball's umbrella diagnosis as well as each diagnosis under that umbrella that he has and he deals with and that we deal with. And a little bit about what it was like to find out each of those diagnoses, which will be a really fun one too.

So for each season kickoff I will give you several audio clips from the season to kind of get you excited and help you know what's coming. You will recognize a lot of these from the trailer episode because guess what I have to draw on--Season 1. It's basically what I have recorded so far. So I hope that you enjoy a little bit of extended clips for Season 1.

Alyssa  3:50  
"It's hard to explain how deep of a connection I feel with William and I didn't breastfeed him. I didn't hold him all the time. And I didn't have the birth plan and I didn't have the, you know, he doesn't talk and we don't do the coloring and we don't do the regular mom things that everybody does. But I still feel connected to him and I still feel bonded with him. And he is my lovey, and I love him. And he's the bubs. And I just, I have this deep connection with him and he communicate together and it's just, I just love him. He's my baby."

"And so quality of life has changed for me. So every time I-- because I'm asked that every time I go to the doctor with him, they're like, How is this quality of life? And I always say it's great. Great because he's happy. And that's how we measure like, is he happy? Is he enjoying what he's doing? Does he does he seem like he's happy? I think happiness is the biggest thing. And I'm just I'm very passionate about that because 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."

Lisa  5:06  
"Some kids are really hard. And so instead of thinking of yourselves like the therapist, I would say, if you can laugh with your child, one or two times a day, that day is a success. And so, set the bar so that you can achieve your goal. And I would say you can usually achieve your goal if your goal is to enjoy your child, to laugh, have a few joyful experiences, now and then, and that's enough. Another day, you can do more than that. But if you are stuck on a day where you think I can't do this, you're not alone. There's a lot of mommies out there feel the same way. And find some little glimmer in which you can enjoy who that little person is."

Madeline Cheney  6:01  
"Just each diagnosis I just felt like I was like lifting these huge weights, just staggering, my legs were shaking like Okay, okay, I'm standing I got this, like, I can survive this and then they'd be like, oh, and guess what he has this too and slam, then they throw it on me I would just like crumble to the ground, I would stay down there for a while and just just wallow, like just feel so weak and so beat up and then I would be able to say I can do this and you know, like pluck up all my strength and finally be able to like stand again with my like shaking even more this time and like okay, like I'm standing and then another one like slamming and like throw me to the ground again, because another one would be thrown on there and that just seemed like that-- That's really the best way I can describe of how it felt to just keep getting diagnosis after diagnosis after diagnosis of these really severe birth defects."

You can like my Facebook page, The Rare Life Podcast for sneak peeks about episodes coming up. Please share this podcast with anyone you know that could benefit from it. Let's spread the love. See you in Episode 2 with Alyssa next week.