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. MAR 27

    The Gap in Mental Health Support After a Diagnosis

    Send us Fan Mail When your child receives a life-altering diagnosis, you leave the hospital with a care plan. ...But no one gives you a coping plan. In this episode, I’m talking about the part no one prepares you for: the emotional aftermath of becoming a medical parent overnight. The grief, the anxiety, the constant fear… and the expectation that you’ll somehow carry it all while staying strong for your child. We talk so much about treatments, therapies, and survival, but almost nothing about what it takes to survive this emotionally. And unfortunately there is a HUGE gap in the medical system and mental health support for caregivers.  If you’ve ever felt overwhelmed, isolated, or like you were quietly falling apart while caring for your child… this episode is for you. You are not alone in this. 💬 In This Episode, We Talk About:  What the early days after diagnosis really feel like  The gap in mental health support for medical parents  The emotional weight of caregiving  The pressure to “hold it all together”  Why so many parents feel unseen and unsupported  What it means to need a coping plan, not just a care planResources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    31 min

  2. 12/08/2025

    Letting go of the "shoulds" of the holiday season

    Send us Fan Mail 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 confessionsofararediseasemama@gmail.com 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    31 min

  3. 10/21/2025

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

    Send us Fan Mail 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    50 min

  4. 06/26/2025

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

    Send us Fan Mail 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    27 min

  5. 05/28/2025

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

    Send us Fan Mail 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    30 min

  6. 05/07/2025

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

    Send us Fan Mail 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    1h 7m

  7. 04/23/2025

    Life Lately: A Rare Mama Catch-Up

    Send us Fan Mail 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    32 min

  8. 03/05/2025

    Navigating Resources and Grants with Advocacy Abby

    Send us Fan Mail 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 ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...

    59 min
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5
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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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