Confessions of a Rare Disease Mama

Jillian Arnold
  • 5.0 (50)
  • PARENTING
  • UPDATED WEEKLY

Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.

  1. OCT 21

    Life Lately/Catch up: Road Trips, School Days & Real Talk with My Husband

    Send us a text 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 ...

    50 min

  2. JUN 26

    BONUS EP: What to do when the world feels like too much

    Send us a text 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 grassUsing breathwork to calm your system in real timeThe power of cold water exposure (yes, even a quick splash!)Why small sensory shifts can create big emotional reliefThis 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 ...

    27 min

  3. MAY 28

    Life Lately: Solo Parenting, Sick Kids, & School Plans

    Send us a text 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 weekIEPs and what we’re thinking for next school yearAn upcoming trip and what it means to plan as a medical familyGiving ourselves permission to take life one moment at a timeIf 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 ...

    30 min

  4. MAY 7

    Creative Fundraising in the Rare Disease Community – Global Genes Panel Recording

    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: 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 BOSSKasey 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 AdvocacyA Father's Perspective🔗 Resources Mentioned: Global Genes Rare Advocacy Exchange: globalgenes.orgRare Village Foundation: rarevillagefoundation.orgPlease Save Damian (Markham family fundraiser site): savedamian.comResources & 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 ...

    1h 7m

  5. APR 23

    Life Lately: A Rare Mama Catch-Up

    Send us a text 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 protocolThe next step in their ASMD treatment journeyStella'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 yearUpcoming 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 ...

    32 min

  6. MAR 5

    Navigating Resources and Grants with Advocacy Abby

    Send us a text 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 ...

    59 min

  7. JAN 29

    Real Food Blended Diets Made Simple: A Conversation with Registered Dietitian Hilarie Geurink

    Send us a text 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: @blendedtubefeedingGet 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 ...

    1h 2m

  8. JAN 17

    A Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her Son

    Send us a text 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: Lauren@curegrin.orgJoin 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 ...

    53 min
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5
out of 5
50 Ratings

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Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.

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