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carrie cariello taking flight

I’m Non-Verbal But This Is What I Would Tell You If I Could Talk.

Things went a little wrong the day I was born.

I was very early. I was very small. I came fast-like and there were a lot of people moving and talking around me. Suddenly, the room felt smaller and smaller and the walls were getting too close and there wasn’t enough air and I was gulping and working, trying to fill my baby lungs.

the air is gone no breathing chest heaving brain crying heart breaking something is wrong nurse something is wrong he isn’t breathing please what is wrong

Everyone was walking quickly and with strong footsteps and there were tubes and doctors and nurses and my mom was calling my name.

Sebastian. 

Just like that, everything changed. In one single second of time on the clock, my life turned into another kind of life.

You see, my brain didn’t get the air it needed, so it turned into a different brain.

I have cerebral palsy.

I am non-verbal.

I am non-ambulatory.

I don’t talk, and I can’t walk.

It’s not fair.

It is no one’s fault, but still, it’s not fair that I had a regular brain at first and then a changed brain after the walls closed in on me, hot and still.

I am eight years old now. Pizza is my favorite thing to eat. I love books. I love to laugh.

I have several special items that help me get through my day.

I have a speaking device, and I can push the buttons and communicate all the things I want to say. I like to ask Alexa to play music.

I have what you call a stander, which is so I can build the muscles in my legs.

And I have a special chair. It has wheels, and straps to keep me sitting in place. It is made for a boy my size.

This chair is my legs, and my comfort, and my mobility, and my movement.

A few weeks ago, I went to Florida with my family. We flew in a big airplane with a blue J on the side.

Whenever we fly on a plane, there is a person waiting for us when we land with my chair.

It is very, very important I have my chair, you see.

This time, though, no one was waiting. My mom and my dad asked where my chair was, and you and all the other people with uniforms on looked at each other and tilted your heads to the side shrugged your shoulders.

I’m sorry, but we cannot get items that are already on their way to baggage claim.

My insides do not match my outsides.

By this, I mean on the outside it looks like I don’t know what people are saying or doing.

On the inside, I do.

I can read.

I can spell my name.

I am happy.

Do your insides match your outsides?

Are you the person you always hoped you would be?

Maybe this seemed like no big deal at the time. Maybe you felt like saying, listen, you can get your chair at baggage claim and it will be fine.

It was not fine.

Another man with a uniform brought a big huge wheelchair for me.

My mom was very upset. She is not a person who gets upset too easily, but watching me slide all around in this too-big chair and everyone had to stop every couple of feet to make sure I didn’t fall or hit my head, well it made her heart feel crushed.

It made her feel helpless.

She remembered the room with no air and the brain changing and the lungs gasping.

Who knows what happened? Maybe one person forgot to talk to another person and there was a misunderstanding and then my chair was all tra la la on its way to the baggage claim, while I stayed still in one place.

In this moment, I had no power.

I had no dignity.

My chair is my legs.

Can you imagine this? Can you imagine your legs don’t work quite right but someone took them off of you and sent them to baggage claim and when you asked, ‘hey, where are my legs,’ people told you, well… They are on their way to baggage claim and there is nothing we can do about that.

Imagine.

Your legs.

With your knees and your muscles and your dignity and your power.

Gone.

I don’t want a free flight.

I don’t want a letter full of apologies.

I want you to remember.


Chastity Boucher

The next time you see a person who is non-verbal, or non-ambulatory, remember me.

Remember the dark-haired boy with the big smile.

It’s true, I don’t talk.

But if you listen carefully, I will tell you things.

I don’t walk.

Yet still, I can move you.

Be the person who makes a difference.

All we have is each other.

This story originally appeared on www.carriecariello.com

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