Confessions of a Rare Disease Mama

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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 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!
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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 plan
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!
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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 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 ...

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 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 ...

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 grass
Using breathwork to calm your system in real time
The power of cold water exposure (yes, even a quick splash!)
Why small sensory shifts can create big emotional relief
This 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 ...