Confessions of a Rare Disease Mama

By Jillian Arnold

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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The podcast currently has 69 episodes available.

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Number 1: Mini Episode: All Aboard the Grief Train… CHOO CHOO
Send us Fan Mail Just when you think you’ve made peace with your life, grief comes barreling back into the station. All aboard! This weekend was a really good one. We had family in town, celebrated birthdays and baptisms, spent time with people we love, and watched all the cousins together. And somewhere in the middle of all that joy, I realized I was struggling. Watching kids around Roman and Stella’s ages run around, play together, and experience childhood in ways my kids can’t brought up a kind of grief I haven’t felt this intensely in a while. Add in the physical and mental exhaustion of getting two medically complex, fully dependent kids to multiple family events all weekend, and by Sunday night, I was completely spent—and sad. In this mini episode, I’m talking about the weirdness of grief as a disability parent: how it can coexist with genuine happiness, how other people’s completely normal milestones can unexpectedly hurt, and how accepting your children’s diagnosis doesn’t mean you stop grieving what the disease has taken from them. I also talk about the guilt that can come with those feelings—because I love my nieces, and cousin's children. I love watching them grow. I want every beautiful thing in the world for them. And sometimes watching them do those beautiful, ordinary things still breaks my heart. Both can be true. So if grief has recently punched your ticket for a ride you absolutely did not ask to take, grab a seat. Apparently we’re going for a ride. CHOO CHOO. 🚂 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 ...
September 02, 202614min
Number 2: 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 ...
March 27, 202632min
Number 3: 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 ...
May 28, 202531min
Number 4: 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 ...
May 07, 20251h 7min
Number 5: 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 ...
April 23, 202532min