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Send us Fan Mail There’s the physical work of caregiving… and then there’s everything happening inside your head. In this episode, I’m talking about the invisible mental load that comes with being the primary caregiver to two medically complex children — remembering medications and doses, tracking symptoms, scheduling appointments, coordinating specialists, managing nursing, ordering supplies, dealing with insurance and Medicaid, communicating with school and therapists, keeping up with equipment, feeds, bowel movements, seizures, respiratory symptoms… and constantly thinking about what needs to happen next. Because even when someone else is physically caring for my kids, I’m often still the person carrying the information. This isn’t an episode about blaming spouses or keeping score. It’s about something I think a lot of primary caregivers experience: over time, one person often becomes the keeper of the information simply because they’re the one coordinating so many pieces of care. And that means getting help doesn’t always mean your brain gets to shut off. We’re talking about the difference between the physical workload and the mental load, why delegating can sometimes become another task in itself, what it feels like to be perpetually “on call,” and why caregiving can be exhausting even on days when you technically had help. If you’ve ever thought, “I’m not even doing anything right now, so why do I still feel completely overwhelmed?” — this episode is for you. 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 ...

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 ...

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 ...

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 [email protected] 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 ...

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 ...

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 ...

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 ...

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 ...

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 ...

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 ...

Send us Fan Mail 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 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 ...

Send us Fan Mail 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] 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 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 ...

Send us Fan Mail 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 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 ...

Send us Fan Mail 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 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 ...

Send us Fan Mail In this deeply personal episode of Confessions of a Rare Disease Mama, I sit down with Ashley Haywood, a devoted mother and passionate advocate for her 8-year-old daughter, Sadie, who is living with Sanfilippo syndrome. Often referred to as "childhood Alzheimer’s," Sanfilippo syndrome is a rare and progressive genetic condition that profoundly impacts children and their families. Together, Ashley and I explore how our children's life-changing diagnoses reshaped our lives in ways we never expected. We reflect on our shared experience of initially retreating from our communities after receiving devastating news, a natural but isolating response to overwhelming grief. We also discuss the transformative journey that followed as we found purpose, strength, and connection in advocacy and community support. Ashley shares her family’s path from diagnosis to their current reality, highlighting the challenges and triumphs of raising a child with a rare and terminal disease. From navigating clinical trials to building awareness for Sanfilippo research, and then navigating divorce in the midst of it. Ashley’s story is a testament to the resilience and unwavering love of rare disease families.  Follow Sadie's journey on instagram Learn more about Sanfilippo syndrome here Shop Sadie Rae merch here (Proceeds to to Cure Sanfilippo Foundation) 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 ...