A devastating ultrasound, a misdiagnosis of down syndrome, an incredible birth, and a whole lot of complicated feelings make up Madeline’s entrance into the special needs world.

Just listened to the trailer? Come here next. This episode covers a more in-depth road map of the show, and a chance to get to know Madeline as she shares her origin story as Kimball’s mama.

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TRANSCRIPT: (full transcript at https://therarelifepodcast.com/show-notes/preface)

Madeline Cheney:

"They had to give him an extra dose of sedation because he was being so feisty and trying to grab everything out. Which is really cute to know."

Well, hey, you're listening to the preface episode for The Rare Life. I'm so glad that you're listening to this. This is a great episode to get started with before you dive into the meat of the podcast. I'm going to cover a few things. I'll cover:

1. who this podcast is for a little more in depth

2. a bit more about the seasonal structure and a few fun facts about my family and me so you can kind of get to know me a little bit before I dive into all the nitty gritty of my experiences with Kimball and other parents as well.

3. And my origin story as I entered the ranks of special needs motherhood which is code for Kimball's pregnancy and birth, really when we found out that he- his body was not forming correctly.

So first of all, with this podcast I keep two groups of people in mind but mainly the first group which is derived from the name of the podcast, parents of children that have rare medical conditions. So this is really who I have in mind while I'm creating episodes and curating different topics for various episodes and different professionals, but it really applies to all parents of children with any kind of special needs or medical conditions or medical complexities. Regardless of how common or rare they are. We talk about rareness, partially because each individual diagnosis when they are rare, are so isolating, and so I mean, special needs parenting is isolating anyway, but it's a new level of isolation. So this is a way for us to band together and create our own big thriving group of everyone who relates with rare. And that brings me to group number two, which I also have in mind, but this is not really created for you, but you can benefit from it. This is for anyone who is curious about what it is like to be a special needs parent. This includes, maybe you have a family member who has a special needs child or a friend with a special needs child. Maybe you just admire special needs parents, which like I don't blame you, because like, we're awesome. Maybe you're a therapist or doctor and you want to hear the other side of the story, you want to learn more about what's on the other side of the mirror. So to all: welcome to The Rare Life.

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You can read the full transcript at https://therarelifepodcast.com/show-notes/preface