Praising God in the Cold and the Storm

There’s this image I used to carry. It is an image of me, my family, sitting around a cozy campfire, singing Kumbaya. Everything is warm, glowing, peaceful. That’s how life feels when everything’s running smoothly. When you’ve got that rhythm. That flow. Here I am, Praising God in the Cold and the Storm.

But what happens when the fire starts to die? When the Fire Goes Out

You feel it. Things shifting. The air gets colder. Your fire starts to fizzle. You frantically grab whatever you can find like scraps of paper, bits of old wood, anything to keep it alive.

Then, out of nowhere, a bird flies overhead and pees on your ember.
Gone. Just like that.

No flame, no light, and no heat.
You sit there… cold.
You think it can’t get worse.
But it can.

You realize you’ve eaten your last s’more.
No heat. No light. No food.
It’s doable. It sucks. But it’s doable.

And then?

The monsoon hits.

Suddenly, you’re drowning in it. The weight. The grief. The fight. The diagnosis. The not-knowing. The knowing-too-much. The never-ending appointments. The medicine. The meltdowns. The rage. The silence. The fire feels like it will never come back.

This Past Year

That’s what this last year has felt like.

Once we received the official clinical diagnosis, everything changed.
And yet… nothing was fully certain.

There is no single test for Opsoclonus Myoclonus Syndrome (OMS). It’s not black and white. No MRI, LP, blood panel, EEG, or X-ray can definitively say: “This is what your child has.” It’s a combination of symptoms, observations, and the experience of doctors willing to say what others can’t.

It’s living in limbo with a name that doesn’t always behave like it’s supposed to.

Protocol After Protocol

We started the “standard” protocol.

• High-dose steroids while hospitalized

• Monthly IVIG

• Four rounds of Rituximab (a type of chemo)

• When that didn’t help, we added ACTH (daily high-dose steroid shots)

ACTH brought an unholy level of rage, insomnia, and OCD.
I watched my sweet boy disappear into something wild and constantly panicked.

He lived in fight or flight.
And so did I.

Second Opinions & the Blessing of Brutal Honesty

I got a second opinion, without permission. Because when you’re a mama in the storm, you do what you must.

This doctor was honest. Blunt. And honestly, I needed it.

She didn’t immediately see signs of OMS and she believed the progression was more aggressive. In the end, she suggested starting over and repeating all the tests.

We did.

And wouldn’t you know? While in the hospital, his ocular flutter returned.

She circled back and agreed: it most likely is OMS.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life…”  James 1:12

Zebra vs. Okapi

In the medical world, doctors are taught:
“When you hear hoofbeats, think horses, not zebras.”

A zebra means something rare. Something unlikely.
We were sure H was a zebra.

But we were wrong.

He’s not a zebra.
He’s an okapi.

Strange. Rare. Beautiful. Mysterious. And completely misunderstood.

And in some holy, divine humor, the okapi just so happens to be my all-time favorite animal.

Go figure.

Heartbeat Moment

Praising God in the storm doesn’t always look like singing around a fire.
Sometimes it looks like sitting in the cold, soaked to the bone, whispering,
“God, I trust You,” even when your teeth are chattering and your heart is tired.

Sometimes praise is a whisper.
And sometimes it’s tears.
Sometimes it’s survival.

But it’s still praise.

Because even in the rain… even in the dark… even when the fire is out…

God is still God.

And the fire? It always comes back.

“When you pass through the waters, I will be with you…” Isaiah 43:2

You can read more from our Opsoclonus Myoclonus Syndrome journey here.

Helpful Resource:
If you are walking through medical parenting, rare disease, grief, faith, or hard seasons, I keep a list of books and resources I have personally found meaningful here: Helpful Resources I Love.

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