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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 ...

Send us a text

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:

• 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
• 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.

🔗 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 ...