Still Me

I’ve always known I was different.
Not because of how I looked, I didn’t look different.
But I didn’t get things the way other kids did

School didn’t make sense.
Words got jumbled.
Noise felt too loud.
Simple things felt hard.
And no matter how hard I tried, it was never enough.

But on the outside, I looked like I was doing okay.

I smiled. I laughed. I coped.
Most people had no idea how hard it really was.
They didn’t see how much I struggled underneath it all.

I don’t want you to feel sorry for me. I was a happy kid.
I always worked hard, even when everything felt confusing.

As I got older, people noticed something was different, but no one could explain what.
They called it “delayed.”
They called it a “general learning disability.”
They gave it names that meant nothing to me.
None of it helped me, my parent or my teachers understand why my brain worked the way it did.

And to some people, no diagnosis meant I didn’t matter.

No label, no support.
No label, no respect.
Just assumptions that I wasn’t trying hard enough.

But I was trying. I always was.
Even when it didn’t look like it.
Even when no one saw it.

Then when I was 13 I got sick.
I had a seizure in my sleep.
Then another one a few hours later.
And then two more later that day.

I was admitted to the hospital, scared, hooked up to machines, doctors everywhere.
They said I might not make it.
But I did.

I believe God saved me that night.

And because I got so sick, I finally got connected to the right people.
I got a pediatrician who never stopped looking for answers.

It took three more years.
More tests. More waiting.
More silence.

And when I was sixteen, we finally got an answer.

I had ARHGEF9.

A rare genetic disorder. So rare, it doesn’t even have a real name.
Something barely anyone in the world has.
Something that explained everything.

My learning differences.
My struggles with processing and comprehension.
Even my seizures.

It was all connected.

The diagnosis didn’t fix things.

It didn’t make the years of confusion or hurt go away.
But it gave me a reason, instead of an excurse.

When I first found out, I felt broken.
This new label made things feel too real.
I thought if I pretended it didn’t exist, it would go away.

But then I realized something.

I’ve been living with this my whole life.
This was a new thing. Just a new understanding.
I was still me.

ARHGEF9 didn’t win.

It didn’t stop me.
And I decided not to let it define me.

It’s just a piece of the puzzle.
A part of my story.

But now I want to share my story because someone else might feel the way I did.
Confused. Different. Alone.

If that is you, I want you to hear this:

You’re not broken. You never were.

Even if no one told you.
Even if people looked past you.
Even if you’re fighting just to be seen.

I don’t always know how to explain what’s going on in my head.
But I’ve lived it.
And I know what it feels like.

Keep going!

Answers might come when you least expect it.
They might not.
Your story still matters. You matter.

This is just the beginning for me.
And I’m finally starting to live life on my own terms.