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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!
• Shop our ...

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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 ...