Rare & Relentless: The Second Brain Surgery

I heard a long, tired sigh from the back seat—my 7-year-old daughter, Penelope. I knew exactly how she felt, but this was just a follow-up. Nothing to worry about, I told myself. Maybe we’d hear, “Let’s just keep an eye on it,” or “Come back in six months.”

But here’s the truth about being a rare-disease mom: intuition becomes both a gift and a curse. My gut is almost always right, and when it is, it usually means painful medical interventions are ahead. This time, I desperately hoped I was wrong.

Penelope had been suffering for months with morning nausea, vomiting, and headaches—the kind that wake you up and don’t let go. She was also falling, much more than usual, her legs covered in bruises. These are classic signs of pressure in the brain, and deep down, I knew it.

Learning to trust your caregiver instincts is one of the hardest parts of rare parenting. You want to believe the doctors will see it first, that you can just be “the mom” and not the medical detective. But too often, I’ve had to accept that I see what others miss. I still wrestle with that—knowing I know more than the experts sometimes.

But the doctor didn’t say that. Instead, they said the one thing no parent ever wants to hear—not once, and certainly not twice:

My daughter needs another brain surgery.

The Moment Everything Shattered

In that moment, everything slowed. My throat closed. My vision blurred. I couldn’t breathe. I cried right there in the room. I tried not to, but it was instant. The shock overtook me.

The doctor explained: there’s visible pressure on her optic nerve, a 4mm crowded space at the base of her brain, and almost no cerebrospinal fluid flow. The pressure has caused a syrinx to enlarge along her spine.

Can we wait?
No. It needs to be scheduled as soon as possible.

Protecting Her Spirit

I turned my back so Penelope wouldn’t see. I didn’t want her to panic or mirror my fear. I whispered to the doctor, “Give me a second to compose myself.”

Because rare disease parenting isn’t just about diagnoses and appointments—it’s about how quickly you can put yourself back together in front of your child when everything inside you has just shattered.

So I did what I’ve done so many times before: shoved the grief into a box, put on my protector face, and stepped into the version of me she needed.

While the doctor spoke, my 7-year-old rubbed the scar on the back of her neck. Then she asked:

“Are you going to open my brain?”

Without missing a beat, I turned to her, wiped my tears, and lied.

I said, “Mommy is happy crying.”

Then I told her how proud I was. How strong her brain looked. How amazed the doctors were by how smart and brave she is.

And she smiled.

The Smile That Broke Me

She smiled because that’s the kind of girl she is: gentle, trusting, full of faith in the world around her.

It’s not her job to carry the weight of this news. Not yet. She deserves to hear:

“Everything will be okay.”

Inside, I was screaming: Not again.

The Weight of Telling the Truth

She will get an explanation—just not right now.

Because how do you explain another incision at the base of her skull? Another hospital stay. Another wave of pain and nausea. How do you prepare a child for the beeping monitors, the IVs, the disorientation?

And how do I tell my husband? How do I call our family and say the words again? All I could think of was the first time they took her back for surgery. My husband cried so hard. He was fine until they rolled her away.

These moments are burned into my brain, and once again I had to be the bearer of bad news.

So I gave myself a week. One call. One conversation. One truth at a time.

The Grief That Stays With You

I found myself not wanting to talk about it. Not wanting to hear, “She’ll be okay,” or “You’ve got this.”

Because when your child is rare, you don’t get to just hope for the best. You have to prepare for both possibilities: that she’ll be okay, and that she might not.

The stress doesn’t just visit—it lives in my neck, my chest, like a weight pressing the air out of me.

Sometimes I convince myself I can skip over the pain and leap into joy. But it doesn’t work like that. To process this, I have to sit in the discomfort.

I know I’ll break. I’ll cry. I’ll take my own time to process away from Penelope. I have learned that I am good in the panic, (problaby from years of ICU nursing skills staying calm in panic) and after the crisis I need moments to process a little more deeply. I call it my debriefing. My husband Rocky is emotional in the crisis, and then great after. Its a balance we learned over the years and it compliments our family dynamic. I love him and give patience during the pre medical intervention, and he in return loves and gives patience after surgery is complete. I should probably do a post on this too. Partners process differently and it can cause lots of stress. We have learned from our mistakes. Years of medical crisis we find our mom and dad strengths in different ways and streamline it.

And then we keep going.

The Strength People Don’t See

People say I’m strong. But they don’t see me collapse into my pillow at night. The naps I must take in the afternoon for emotional breaks. They don’t see my fierce voice disappear in the quiet pain. They don’t see me frozen in thought, sitting in the car, not ready to put the brave face back on.

They don’t see how often I pause and look at her with overwhelming love, knowing I almost lost her once already. Facing that uncertainty is its own kind of grief.

I don’t know how I do it. I just do.

Because I’m her mother.

And I don’t get the luxury of falling apart.

Rare & Relentless

I get one second to cry, then I have to breathe, stand up, and walk her back through the storm with both hands outstretched.

She deserves a mother who can still make room for joy, even on the worst days. She deserves to hear that her brain is strong, that her body is wise, that she is safe even when everything feels uncertain.

So we’ll do this. Not because we’re fearless, but because love like this keeps moving forward even when it’s afraid.

And if you’ve ever had to smile through tears, lie gently to protect your child’s spirit, or whisper devastating news like it’s just another bedtime story—

I see you.

This is what it means to be Rare & Relentless.

And we keep going. Even now.