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.

... more

5050 ratings

FAQs about Confessions of a Rare Disease Mama:

How many episodes does Confessions of a Rare Disease Mama have?

The podcast currently has 69 episodes available.

Best of Confessions of a Rare Disease Mama

The most played episodes among Podcast App listeners.

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/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 ...
October 21, 202550min
Number 4: A Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her Son
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 ...
January 17, 202554min
Number 5: How to best support the caregiver parent in your life
Send us Fan Mail Are you wondering how you could best support the parent in your life who's child may have just been diagnosed with something life altering or is dealing with a lot of complex medical issues? You are not alone! This episode I share all the great responses I got from listeners after taking to social media to pose this question as well as sprinkle in some of our own personal experience and what we found to be most helpful when we were stuck in serious survival mode with our kids after receiving their diagnosis'. Feel free to share this episode with any friends or family in your life who want to be there for you, but just don't know what kind of support you need. Happy listening, friends! 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 16, 202333min