The Rare Life

Oct 31 2024 220 ep. 41 mins 60

The Rare Life Podcast artwork

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.

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173: Everything You Need to Know About Sticker Club

Oct 31 2024 16 mins

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 y

172: Nikole’s Story | Diagnosis Misinformation + Never Giving Up

Oct 24 2024 45 mins

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—whic

171: The Financial Strain of Medical Parenting w/ Amanda Griffith-Atkins + Alyssa Nutile

Oct 17 2024 65 mins

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

170: Hospitalizations | Triggers, Shoddy Sleep and Food, + Discharge Hangover w/ Alyssa Nutile and Larisa Bothma

Oct 10 2024 88 mins

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

169: Crunchy Medical Parenthood w/ Suzi Boubion and Julianna Morasse

Oct 03 2024 59 mins

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

168: Stephanie T.’s Story | Undiagnosed Son, a Ballroom + Fully Accepting the Now

Sep 26 2024 49 mins

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 c

167: What We Want New Medical Parents to Know w/ Chandra Bloomfield

Sep 19 2024 84 mins

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 wo

166: Nonspeaking Child | Longing to Access Their Inner World + Give Them Medical Autonomy w/ Suzi Boubion

Sep 12 2024 57 mins

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 communica

165: What We Want Our Child’s Therapists to Know, But Don’t Tell Them w/ Alex Farha

Sep 05 2024 69 mins

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

164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”

Aug 29 2024 51 mins

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