Adoption, Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Twelve Candles After Silence

Twelve Candles After Silence

Not Ready Yet: Twelve Candles After Silence

The room was supposed to be a doorway home.
Quiet, not heavy. Not sad.
Just full of the relief that comes
when five long days are finally over.

Bags packed.
Shoes by the door.
Hope sitting quietly on the edge of the bed
waiting to go home.

He was scared.
I remember that most.
Wide eyes searching my face
while I tried to sound calm enough
for both of us,
telling him every step
like calm could be borrowed.

I asked if they were qualified.
They said yes.
They said it was standard.

And then everything stopped being standard.

The line came out
and fear flooded his eyes so fast
it felt like watching a storm swallow the sun.

“Mommy help me.
Mommy save me.
I am on fire.
My heart is on fire.”

Over and over
like a prayer no one else heard.

His skin turned cold under my hands.
Pale. Fragile.
Clammy fingers.
Dark circles carving shadows beneath his eyes
like exhaustion had finally caught him.

I looked at the doctors
and they stood there, white as ghosts,
perplexed,
calling it behavior.

Behavior.

My hands knew better.

A body running out of strength
like he had already fought a thousand miles.
A child folding inward
while the room stood still.

That was the moment I knew
no one else was coming to save him.

I climbed onto the bed
because love does not wait for permission.
Held him as tight as fear would allow.
Kept explaining every second
even when my voice shook.

“Your room isn’t ready.
I’m not ready.
Please don’t leave me.
Wake up buddy.
Wake up.”

His body felt emptied out.
No strength left.
No fight left.
Just silence growing heavier in the air.

And then he went still.

Eyes rolling back.
Breath gone.
Silence louder than any machine.

I screamed his name into a room
that suddenly felt enormous and empty.
>I remember crying.
>I remember dissociating.
>I remember the sound of my own voice
echoing back at me like I was alone.

So much silence.

I pressed into his chest
hard enough to hurt
because pain was the only language left.

And he came back.

Later he told me what I could not see.

He said he was warm.
Bright.
Peaceful.

He said he saw me crying.
He said he was talking to me
telling me not to cry
but I couldn’t hear him.

I wish I had heard that.

A kind nurse.
Another doctor.
Movement finally replacing stillness.

A lung nicked.
Medicine where air should live.
Not life-threatening, they said,
but close enough to haunt every breath since.

We drove four hours toward someone who would listen.
The road long.
The night longer.
No talking.
Just silent tears
and a body driving home
while my mind stayed behind in that room.

And now—

Twelve years old.

Still fighting a body that refuses easy answers.
Still living with a diagnosis that does not care about fairness.
A nervous system writing its own rules.
A life many dismissed
like it was nothing.

But he was never nothing.

He is the child who fought to stay.
The child who heard his mother’s voice
through silence
and chose to come back.

And still
he wakes up.
Still
he fights.
Still
he breathes.

Twelve candles burning tonight
because love refused to be quiet
and a mother kept knocking
on a door
that heaven almost closed.

I do not say his name here,
but heaven knows it.
And I know it.

Twelve years after a room went silent,
he is still here.

And so am I.

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Day He Ran –Our Beach Miracle

The Day He Ran – Our Beach Miracle

I can still feel the sand under my feet and I can still remember The Day He Ran. Our Beach Miracle.

The sun was setting, the breeze was just right, and we were finally on a family vacation, sort of, after what felt like a lifetime in hospitals.

H sat on a blanket, watching the waves, surrounded by siblings and snacks.

He hadn’t walked unassisted in almost a year.

We brought his wagon to the beach to help transport him around. We expected him to stay seated.

But then…

He Stood

After much sitting and playtime in the sand and the water. I quickly carried him up the beach, at dusk, and sat him on a beach towel. He was all snuggled up as the sun was setting and I was getting a few quick videos and pictures.

Then.

He stood.

And not just stood.

He ran.

Across the sand, toward the ocean. His body moving like it remembered how, even though it shouldn’t have. I stood in holy awe as my child, who had to relearn everything, ran straight into the water like he’d never been sick.

It wasn’t just steps. It was a miracle.

“Against all hope, Abraham in hope believed…”
— Romans 4:18

No One Can Tell Me Otherwise

Doctors can say what they want.
Science can shrug.
But I know what I saw.

I saw God.

That day, I saw healing in motion.

I saw the fire in his eyes, the joy in his shout, the water splash around his feet.

In that moment, I saw the moment heaven touched earth for my son.

Heartbeat Moment

We still face hard days. Flare-ups. Setbacks. Fears.

But that moment reminds me what’s possible.
God doesn’t always heal the way we ask but sometimes?
Sometimes He does.

And I’ll never stop praising Him for the day my boy ran into the ocean.

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