Tag: life

”Me and Matthias, between storms. On days like this, you’d never know what we’ve been through. But I do. And I hold it — just like I hold him.”

Every parent has moments they never forget. For me, it was the day my son, who has nonverbal autism and epilepsy, had seizures that shook our world. One ended with a frantic call to emergency services. The other with a medically induced coma. This is the story of both — and how they changed me.

It always starts quietly.

Matthias becomes still – unnaturally quiet. I’ve learned to recognize that silence now. It’s the kind that holds its breath before the storm.

Then, the vomiting starts. His body rejects everything. He grows limp, like a doll – soft, heavy, unresponsive.

And I already know:

An episode is coming.

The first time… I was alone.

I called everywhere. I rang every name I could think of. No one answered. Maybe they were busy. Maybe they did not hear the phone. But at that moment – in the middle of my child slipping away from me – I realized something terrifying:

I was alone in this.

That’s when I called 112. I didn’t even know what to say. I just cried into the line, ‘’My son… he’s not responding.’’

The ambulance came quickly. They moved fast – pulse check, heart monitor, epilepsy drops, temperature probes. Tubes. Wires. Words I did not understand.

And still.. his eyes kept on rolling. No focus. No response.

I sat there, watching him be helped and not knowing what would come next.

That was the moment – the real one – when the weight of it all settled into my chest.

This is our life now.

And even though I have love, even though I have help sometimes, when these moments come.. it’s me and him.

Me holding him.

Me holding it together.

Of course, they came.

The people I tried to reach – they called back. They showed up. But those 15 minutes in between…

That silence – of unanswered calls, of Matthias slipping away, of waiting for the ambulance to arrive – it  changed something in me.

I was deadly scared.

I did not know what to do – only  that I had to keep holding him, keep watching his face, keep whispering ‘’Mama’s here’’ even though I was not sure he could hear me.

Time did not pass like normal time. It stretched out, slow and cruel.

And in the space – in that gap between dialing and arrival – I understood something I hadn’t wanted to admit before:

When it’s most urgent, it’s just me and him.

Not because people don’t care.

Not because I don’t have support.

But because life with a child like Matthias moves faster than most people know.

Epilepsy does not wait.

Vomiting, unconsciousness, seizures – they don’t come on a schedule.

And when they do.. I don’t get to panic. I don’t get to fall apart.

I become everything.

The voice, the nurse, the calm, the hands, the anchor.

Later, when we thought the worst had passed, it got worse.

The seizures didn’t stop. His body would not rest. His brain would not slow down.

That’s when they decided to put him to sleep.

Medically induced coma.

Twenty-four hours. Tubes down his throat. Numbers blinking.

I watched as they silenced his body to protect his brain – and it felt like watching a light inside him flicker into stillness.

That was even worse.

Worse than the ambulance. Worse than the vomiting. Worse than the unanswered calls.

Because this time, they took over.

And I had to sit by, powerless, while machines did the work of keeping my boy alive.

I watched his chest rise and fall under layers of plastic and wires, wondering if he could still feel my hand.

I whispered prayers into his skin.

I counted the hours until I could hear his voice again – even just a sigh, even just his eyes opening.

I knew he was strong. But even the strongest needs rest.

And that day, I broke – quietly, completely.

I did not cry loudly.

I did not scream.

I just sat next to his bed and said his name until my voice trembled.

Because if he was fighting silently, I needed to stay steady on the outside – for him.