When Even the Easy Things Are Hard: The Invisible Load of Parenting a Rare Child

Full Circle Joy: A Resilient Parenting Moment

A Full Circle Moment—With a Twist

This summer, My Girl will be a volunteer counselor at a camp for children with medical complexity.

Watching your child grow into someone who gives back is always meaningful. But this moment?
This one feels sacred.

She’s returning to serve at the same camp that once held her through the hardest of times—
A place where she didn’t have to explain herself.
Where she wasn’t “the sick kid.”
Where she could just be.

This is what we call a Full Circle Moment—and this mama’s heart is so proud.

When “Simple” Isn’t So Simple

As part of the camp’s onboarding, she needed a TB test.
No big deal, right? Just a routine step.
But if you're parenting a child with rare disease, you know… nothing is ever that easy.

Because of her condition, the skin test could give a false positive.
So we chose the blood test instead.

But here’s the thing:

• She’s a hard stick.

• Her veins are damaged from years of infusions.

• Her body doesn’t cooperate with “simple.”

Four labs.
Three hours.
Multiple needlesticks.
Two defeated hearts.

We left exhausted—physically and emotionally—and just a little more disillusioned.

The Myth of “Just Like Every Other Kid”

There’s a message out there that our rare kids should be treated “just like everyone else.”
And yes—inclusion matters.
Hope matters.
But so does reality.

Pretending the playing field is even doesn’t remove the hurdles.
It just makes the climb lonelier.

Even the basics—camp, school, a simple test—come with:

• Extra steps

• Extra risk

• Extra emotional labor

Sometimes, we just want someone to say:

“Wow, that stinks.”
And mean it.

The Weight No One Sees

The emotional burden is real.
But so are the logistics.

Behind every milestone, every outing, every appointment… there’s a parent juggling:

• Insurance calls

• Medical trauma

• Side effects

• Specialist notes

• The constant question:
  Is this safe? Will she be okay?

This invisible load?
It’s relentless.
And most people never see it.

To My Fellow Rare Parents: You’re Not Imagining It

If you’ve ever:

• Had a beautiful moment wrecked by a medical detour

• Advocated through tears

• Wondered why something can’t just be easy

Me too.

You're not overreacting.
You're not failing.
You're carrying a weight most don’t even know exists.

What Helps When “Easy” Isn’t Easy

If you’re in one of those weeks where everything feels harder than it should be, here’s what helped us:

✳️ Name It

Say it out loud: “This shouldn’t be this difficult.”
You can’t fix what you won’t name.

🎒 Pack a Calm Kit

For you and your child—fidgets, snacks, headphones, a grounding phrase.
It makes a difference when stress is high.

🤝 Find Your People

You don’t need a big support system.
Just one person or post that makes you feel seen.

💭 Let Go of Solving Everything

You don’t have to fix it all.
Just keep showing up.
And you are.

Because It’s All Difficult—and You’re Still Doing It

This journey asks more of us.
And yet—you’re still here:

• Still showing up

• Still protecting

• Still celebrating wins, even when they come wrapped in medical tape

That’s worth honoring. Every single time.

So… What Happened with the TB Test?

After a night of rest and a lot of prayer, we got it done—blood drawn the next day at the hospital lab.
I updated the camp.
Followed up with her medical team.

All is well.
We live to fight another day.
One challenge at a time.

💛 Looking for More Encouragement and Support?

You don’t have to carry the invisible load alone.
At Resilient Parent Consulting, I offer tools, coaching, and community for families just like yours.

✔️ Download the Resilient Parent Toolkit – free support for tough days
📆 Book a free coaching call – talk through your unique challenges
💌 Subscribe to my newsletter – for honest reflections and real strategies

You’re not alone. And you’re doing more than enough.