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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 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

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!
• 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 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 ...