Summary: On this special mini episode, we’re hearing from a long-time listener turned board member, Carolina! We got to chat about what led Carolina to The Rare Life, what The Rare Life has meant to her, how she helped plan this year’s Sticker Club as part of our fundraising committee, and how she’s helping us grow and reach new communities via a Spanish translation of the podcast! And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a...

We all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way. Because if we don't use the perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages. And it goes without saying that this kind of behavior is not okay and can actually cause...

Sticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins. In this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!) If you want to learn more about how to support The Rare Life, get some awesome stickers as a...

It’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!) In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an...

Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons.  Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.” This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.) But despite this traumatic start,...

It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with. In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts,...

There are few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful. In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of...

Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals. This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ In...

Stephanie’s family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them. And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Stephanie to become his full-time caregiver. But even though the big plans for their family had to be adjusted, Stephanie doesn’t spend her time...

When we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward. So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a brand new medical parent? What would you want to know right at the beginning? And in today’s episode, I’m sitting down with Chandra Bloomfield to...

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is? These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities. In this episode...

Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework? Or remind them just how many other therapy appointments you have scheduled this week. Or maybe just explain to them that... you want to be mom, not play the role of therapist today. In today’s episode, I’m joined with guest and fellow disability parent Alex Farha to go through all the things that parents from this community wish they could say to their child’s therapists. We cover all kinds...

Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella. In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of...

It’s time for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the end of the season. But, before we dive into our sneak peeks at the end of the episode, we’ve got some exciting updates for you! We’re launching a...

It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same anymore. In this mini-episode, Maddison shares how she’s coped with the abrupt adjustment to single medical parenthood. She shares the parts that...

Three years ago, I shared two episodes about my own family: one where I discussed how I discovered that I was a carrier for my son’s condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we’ve navigated difficult decisions and agonizing choices, and now, for once, we feel somewhat settled. In this episode, I’m sharing those decisions, how we made them, and how they’ll impact our future. Plus, I’m sharing a positive...

When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now? In this catch-up episode, Tiffany shares how much has changed in these last two years, from inter-state moves to buying a new life to finding a balance as a single mother between the unique needs of each of her...

You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community. In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet. Also, huge thank you to our sponsor Functional Formularies! They make incredible,...

Kari was one of our very first guests almost four years ago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn’t happened yet. And now? Well, her entire world has changed in big and small ways. In this catch-up episode, Kari shares with us what it’s been like trying to relearn how to live in the world without her husband and partner, and she shares all the ways that Sloan has been the driving force to keep her going in...

Each week, I share a new episode and guest, but I realized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family. I’m sharing what motherhood looks like these days, traits that I do and don’t love about myself, and lots of other lower stakes facts. I’m so grateful for this opportunity to be vulnerable with all of you, and I am...

There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere? In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN. Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food...

After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down. In this short catch up with Vanessa, she’s sharing the way that childhood cancer completely changed the way Vanessa looks at raising children with medical complexity. She shares the toll this diagnosis took on...

Birthdays, as we understand them societally, are a time for celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolation to reminders of difficult hospital stays to a resurgence of anticipatory grief. In this episode, we’re sharing all your thoughts and feelings as a community around birthdays: the joy, sorrow, and everything in between. Also, huge thank you to our sponsor Functional Formularies!...