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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!
• Shop our ...

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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 ...

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In this solo stream-of-consciousness episode, I’m catching you up on everything happening in our world lately—from the latest updates on Roman and Stella’s treatment journey, to exciting news about my book Soaring Together, to some personal reflections on life, advocacy, and motherhood.

You'll hear about where we are with the investigational brain medication, some hopeful signs we've been seeing, our upcoming family trips, and a big (and bittersweet) decision we’re considering for next year: sending the kids to an in-person school for children with disabilities. I’m sharing all the emotions that come with these changes—hope, nervousness, gratitude—and what it means to show up for life, even when it’s complicated.

If you’ve been following our story or are just tuning in, this is a cozy, honest, and real-life update from our little corner of the rare disease world.

In This Episode:

• Updates on the kids’ investigational drug protocol
• The next step in their ASMD treatment journey
• Stella's FIRST dance recital 
• Soaring Together now available at the Cincinnati Zoo Gift Shop!
• Why we’re considering in person school for Roman and Stella next year
• Upcoming travel plans (and why these trips are extra meaningful)
• The power of making memories—big and small

*Special shout out to @abbeybenj for inspiring me to get Stella into a dance class!

Thank you for being here and for walking this road with us. 💛

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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Finding financial support and resources as a rare disease parent can feel overwhelming—but what if there was a platform designed to make it easier? In this episode of Confessions of a Rare Disease Mama, I sit down with Abby Zachritz, also known as Advocacy Abby, to talk about the incredible tool she’s created in partnership with SupportNow to connect families with grants and resources tailored to their child’s diagnosis and location.

Abby shares how her own experiences as a mother and caregiver to her disabled son led her to build this platform, the impact it’s having on families, and practical advice for caregivers looking for financial support. If you’ve ever struggled to navigate the world of grants and assistance programs, this episode is for you!

In This Episode, We Discuss:

✨ How Abby became "Advocacy Abby" and what inspired her platform
✨ The challenges families face in accessing financial assistance
✨ How her platform works to match families with available grants
✨ Tips for advocating for financial support and navigating the system
✨ Why caregivers need more access to resources—and how to find them

Connect with Abby & Explore Her Platform:

📲 https://www.advocacyabby.com/

📲 Follow Abby on social media: @AdvocacyAbby

📲 Explore grants through CONNECT

 📲Explore SupportNow

📲Book a consultation with Abby here

Listen to my episode with Alena Gourley here

Check out Alena's new book Blessed By Death on amazon.

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 episode of Confessions of a Rare Disease Mama, I'm joined by Hilarie Geurink, a registered dietitian with a passion for empowering families to explore real food blended diets for their loved ones. Hilarie specializes in creating personalized nutrition plans that incorporate whole foods, providing an alternative to traditional formula-based tube feeding.

We discuss the benefits of blended diets, practical and easy tips for getting started, and how they can positively impact the health and quality of life for children and adults with feeding tubes. Hilarie shares her wealth of knowledge and practical advice, along with some inspiring success stories from the families she’s worked with.

Whether you’re already using a blended diet or are curious about making the switch, this episode is packed with valuable insights and encouragement for caregivers navigating this journey.

Key Topics Covered:

• What is a real food blended diet?
• The health benefits and challenges of switching to whole foods for tube feeding.
• Strategies for preparing and balancing a nutritious blended diet at home.
• Resources and tools to support families interested in blended diets.

Tune in for an enlightening and encouraging conversation that sheds light on the power of real food!

Connect with Hilarie:

• Instagram: @blendedtubefeeding
• Get 25% off monthly membership to her online community and resource group, Blended Tube Feeding Made Simple: HERE
  
  

Additional Resources:

• Article on blenders and discount programs: https://blendedtubefeeding.com/the-best-blenders-for-tube-feeding-with-discounts/
• Article on commercial real food formulas: https://blendedtubefeeding.com/real-food-tube-feeding-formulas-a-dietitians-review/

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 moving episode of Confessions of a Rare Disease Mama, I sit down with Lauren Williams, a rare disease advocate and one of the driving forces behind the CureGRIN Foundation. Lauren shares her journey as a mother to a son who bravely fought against GRIN1, a rare genetic condition, and the heartbreak she has and continues to endure from his passing just over a year ago.

Lauren opens up about how she made the decision to continue to advocate after her son's passing, dedicating her life to supporting other families navigating GRIN1 diagnoses. We discuss the importance of community, the challenges of advocating for rare diseases, and the legacy of love and resilience that her son has inspired.

Trigger Warning: Child loss

Connect with the CUREGRIN Foundation:

• Website: https://curegrin.org/
• Social Media: @curegrin_foundation

Connect with Lauren:

• On facebook: https://www.facebook.com/laurenrochellewilliams/
• Through email: [email protected]
• Join her virtual support group (Unbreakable Bonds) for bereaved parents of medically complex children:  https://www.facebook.com/share/g/15XzQPCNTz/

Thank you for listening and holding space for this important discussion.

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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As the new year begins, I’m sharing some personal changes I hope to put into practice in 2025. From doing more gratitude journaling to developing better sleep habits & less doom-scrolling before bed, I’m diving into the shifts in routine I want to cultivate this year.

I’m also opening up about how the winter months affect me (especially once the holidays are over) and the intentional ways I’m working to combat the seasonal blues. If you’re someone who feels the weight of the colder, darker days, this one’s for you. Together, let’s continue to find ways to nurture hope and light as we move forward into a new year.

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout

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 solo stream of consciousness episode, I reflect on the unique challenges and joys that the holiday season brings for families navigating rare diseases and medical complexities. I share practical tips for managing expectations, creating meaningful traditions, and finding joy in the small moments. I'm here to offer encouragement for parents feeling the weight of the season, reminding them that connection and presence matter far more than perfection. Whether you’re scaling back traditions or adapting them entirely, this episode is a gentle reminder that the holidays can still hold magic, even when they look different.

Join the Conversation:
Have thoughts about today’s episode? Share your holiday tips, reflections, or just drop a note to connect! Send me a message or tag me on social media with your thoughts. Let’s navigate this season together, one moment at a time.

Don’t Forget:
If you enjoyed this episode, please take a moment to subscribe, leave a review, and share it with another parent who might need a little holiday encouragement. Your support means the world and helps us reach more families who need it most.

Listen to the TOP 3 episodes of 2024:
1. My Inner Debate on a Third Child and What I Have Come to Realize
2. Mini Ep: My EXCITING, BIG Announcement!
3. Talking About All the Things with The Rare Life's Madeline Cheney
 
Looking forward to seeing you all back here in 2025!

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 ...