The Rare Life

What if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow. In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering . We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be...

Holidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it. In this episode, I’m replaying part of Ep 108 w...

So many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for, despite the hardship.   So to prepare for this episode, we asked you about those things you’re most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we’d have...

Season 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet! So to celebrate the end of this season, per tr...

It’s our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for each episode of the podcast, from start to finish. (It’s probably a lot more than you would think!) And for the sake of transparency, we’re also sharing our mission here at The Rare Life, why we only fundraise twice a year, a...

Watching our children go through pain in a medical setting, even when we know it’s what is best for them, can be difficult for parents to navigate. We want to help, but sometimes it can be hard to know what is actually easing instead of compounding the trauma. Fortunately, there’s a specialty that focuses on this exact problem: enter the Child Life specialists. They’re here to help families provid...

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,...

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....

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!) I...

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 c...

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...

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,...

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 dis...

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 the...

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...

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...

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...

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 t...

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 epis...

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 sn...

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 sh...

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...

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...

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 in...

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 par...