Confessions of a Rare Disease Mama

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The holidays can feel magical... or overwhelming. For parents of children with medical complexity, special needs, or chronic illnesses, the season often comes with invisible burdens and unspoken expectations. In this episode, I talk about the weight of the “shoulds” we place on ourselves: the traditions we think we have to do, the perfect holidays we imagine, and the grief that surfaces when reality doesn’t match our expectations.
Together, we explore how to:
Acknowledge the grief without letting it steal joy.
Release the pressure of “should” and embrace imperfection.
Find moments of magic in the ways your family actually celebrates.
Carry the invisible weight of 24/7 caregiving with compassion for yourself.
Whether you’re navigating medical equipment, illnesses, missed traditions, or just the stress of a busy holiday season, this episode is for parents who are learning to show up as their best selves — even when it looks different than expected.
How to purchase your signed hardback copy of Soaring Together in time for the holidays:
Email [email protected] with subject "Holiday Order"
Please include: how many copies you'd like, who you would like them signed to, mailing address, and the best form of payment for you (I accept Zelle, Paypal, or Venmo)
If you aren't necessarily looking for a signed copy, you can always purchase through amazon or barnesandnoble.com
Shop my brand new merch designs- the perfect holiday gift for the caregiver in your life!
Resources & Links for this episode:
Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
Learn more about our brave warriors: saveromanandstella.com
Support our family: GoFundMe
Follow us! Instagram: @confessionsofararediseasemama
TikTok: @rare_mama
Facebook: Jillian Arnold & Confessions of a Rare Disease Mama

Get your FREE Positive Affirmations for the Medical Parent PDF here!
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After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories.
We open up about:
 🚗 The three road trips that (at times) tested our sanity, but also brought us so much joy 
 🎒 What it’s been like transitioning the kids to in-person schooling
 💬 How we’re managing caregiving, marriage, and everything in between
It’s a real and lighthearted catch-up episode- just us, talking about where we’ve been, what we’ve learned, and how we’re finding our rhythm again.
Welcome back, Rare Mamas (and Dads!). I’ve missed you, and I can’t wait to reconnect. 💛
Shop our all our travel accessories on my Amazon Storefront
Resources & Links for this episode:
Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
Learn more about our brave warriors: saveromanandstella.com
Support our family: GoFundMe
Follow us! Instagram: @confessionsofararediseasemama
TikTok: @rare_mama
Facebook: Jillian Arnold & Confessions of a Rare Disease Mama

Get your FREE Positive Affirmations for the Medical Parent PDF here!
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Ever feel like the world is just... too much? Whether it's the endless news cycle, the weight of caregiving, or just the everyday overwhelm, you’re not alone. In this episode, I’m opening up about what happens to our nervous system when we’re overloaded—and sharing simple, accessible grounding techniques that can help bring us back to center.
I’ll walk you through practical ways to regulate your body when it’s in survival or burnout mode, including:
Getting outside and standing barefoot in the grass
Using breathwork to calm your system in real time
The power of cold water exposure (yes, even a quick splash!)
Why small sensory shifts can create big emotional relief
This isn’t about pretending everything’s okay. It’s about learning how to stay rooted even when it’s not.
Whether you’re a medical mama, a rare disease parent, or just a human trying to stay grounded in an unsteady world—this one’s for you.
Take a deep breath. You’ve got this, mama.
Resources & Links for this episode:
Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
Learn more about our brave warriors: saveromanandstella.com
Support our family: GoFundMe
Follow us! Instagram: @confessionsofararediseasemama
TikTok: @rare_mama
Facebook: Jillian Arnold & Confessions of a Rare Disease Mama

Get your FREE Positive Affirmations for the Medical Parent PDF here!
Shop our ...

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In this casual solo episode, I’m just catching you up on what life has looked like lately over here. From solo parenting while Donald’s been away for job training, to the kids catching colds (because of course they did while Donald's gone), to navigating IEP meetings and school plans for next year—it’s been a lot, but also I'm surviving it!
I’m sharing a peek into the daily chaos, the mental load, and some of the sweet moments too. Plus, we’ve got an upcoming trip on the calendar, and I’m talking a bit about what I’m looking forward to.
If you’re in a season that feels a little messy and a lot full, come sit with me for a bit. No big agenda—just a heart-to-heart from one rare parent to another.
In this episode:
Solo parenting + surviving the sick week
IEPs and what we’re thinking for next school year
An upcoming trip and what it means to plan as a medical family
Giving ourselves permission to take life one moment at a time
If this episode resonates, I’d love to hear from you! Tag me on Instagram @confessionsofararediseasemama or send a quick DM. And if you’ve got a second to leave a review, it helps other medical and rare mamas find the show. 💛
Resources & Links for this episode:
Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
Learn more about our brave warriors: saveromanandstella.com
Support our family: GoFundMe
Follow us! Instagram: @confessionsofararediseasemama
TikTok: @rare_mama
Facebook: Jillian Arnold & Confessions of a Rare Disease Mama

Get your FREE Positive Affirmations for the Medical Parent PDF here!
Shop our ...

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In this special episode of Confessions of a Rare Disease Mama, I'm sharing the live audio from a panel I had the honor of moderating at the Global Genes Rare Advocacy Exchange. This conversation dives into the power of creative fundraising—something so many of us in the rare disease community are tasked with, whether we feel ready or not.
You'll hear from three incredible rare parents who are using their voices, talents, and grit to fund life-changing research and support. We talk strategy, heart, and the very real emotional toll (and triumph) that comes with fundraising for our children.
🎤 Featured Panelists:
Brittany Markham – Rare Mama to Damian, who has raised over $1 million toward ASMD research through innovative, and extra creative efforts. Check out her past episode here:How to Fundraise Like a BOSS

Kasey Woleben – Rare Mama & Co-founder of the Rare Village Foundation. A powerful advocate for families navigating rare diagnoses.
*You'll also hear briefly from Daniel DeFabio, Director of Community Engagement at Global Genes and rare dad to Lucas. Daniel has joined me on the podcast before! You can check out his past episodes here:
Eight Different Types of Advocacy
A Father's Perspective
🔗 Resources Mentioned:
Global Genes Rare Advocacy Exchange: globalgenes.org
Rare Village Foundation: rarevillagefoundation.org
Please Save Damian (Markham family fundraiser site): savedamian.com
Resources & Links for this episode:
Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
Learn more about our brave warriors: saveromanandstella.com
Support our family: GoFundMe
Follow us! Instagram: @confessionsofararediseasemama
TikTok: @rare_mama
Facebook: Jillian Arnold & Confessions of a Rare Disease Mama

Get your FREE Positive Affirmations for the Medical Parent PDF here!
Shop our ...