What I Know is Different than How I Feel

I know he was born in 2010 on a cold, icy winter day after what felt like days of pushing.

His birth was traumatic. At least that’s how it felt to me.

I remember them saying he’s not breathing. I watched them gather around the table. So many hands. All rubbing him.

I was waiting for the cry. I kept looking at my doctors face to see if he was panicked. He was an old pro. He’d been doing this for years.

He seemed fine. Never sweating. Never appearing frazzled.

I felt exhausted. And so excited. I was a mom. I had a baby. A baby boy.

Except I couldn’t reach him. I felt like an outside looking in.

I kept trying to see through the sea of bodies gathered around my 9 pound baby. I remember I kept moving my head and body trying to get a glimpse.

It was so quiet.

It felt like an eternity.

All I could manage to choke out was, ‘I want my mom. Jamie, get my mom.’

And then he was fine. A cry. Loud. And angry.

And he was in my arms. He was Cooper. My Cooper.

I tell that story because that’s exactly how I would describe his beginning years.

It felt like an eternity.

Traumatic in a way. So many times I felt like an outsider peering in.

Waiting. Waiting for milestones. Waiting for words. Waiting for it to get easier.

So many people. All working to get him ok.

Confusion. Frustration.

Now we are 8 years in.

And what I know is so very different from what I feel.

The paperwork say he’s severely autistic. A level three. Sometimes a four.

Nonverbal. No spoken words. Apraxia.

Anxiety.

Severe intellectual disability.

If you dig even deeper in the book of paperwork you can find his IQ. I won’t type it. I refuse to acknowledge it.

The labels aren’t pretty. They don’t describe an easy reality. Or a typical future.

What I know is terrifying at times. It feels heavy. And it weighs me down.

What I know is different than how I feel. And as his mom, I feel it all. Not just one emotion. Dozens. All wrapped up.

I feel hopeful. I feel happy. Cooper is doing so well lately.

He is thriving. He is content. He is trying.

I feel sad. I even feel angry. I allow myself to have a pity party at least once a week. I wonder why. And how. And why some more.

I feel invisible. Like the world has forgotten about us.

I feel isolated.

I feel love.

I feel fear. Fear so real that sometimes, like today, when I think of him as an old man, without me, I have to hide the tears behind my sunglasses.

Why? Because we are train hunting. Me and my boy. Just the two of us. And there is no time for tears.

So I shove those feelings down for later. Like when I’m in the shower or waiting to fall asleep.

Then I’ll think about him at age 80. I’ll be long gone. And I tell myself he won’t be alone.

That he’ll have his brothers. And people that will love him.

He still won’t be talking. He’ll be Cooper. Just older.

They’ll touch his face. And hold him. And never let him feel a moment of fear like I have right now.

Then he is pointing. A train is coming by. And I am back from what I know to what I feel.

I feel the silence. I feel the joy. I feel the absolute love I have for this little person.

What else do I know?

I know that while he’s never said mom. Or train. Or Sawyer. I know that he loves me.

I know I am his person. And I know that because he touches my face.

He holds it with both hands. Every single day.

He looks so deep in my eyes that it takes my breath away. Sometimes he smiles. Or cries. Or does it to get my attention.

Or he will turn my cheek to look at an airplane. Or a bird. Or a bug.

And I gasp every time. Like he’s shown me the most beautiful object in the world. Because when my Cooper wants to show me something, I pay attention.

When he holds my face like this, I know this is real. I know it and I feel it.

And I feel a love so strong that I can hardly breathe.

But in these moments, there is something else too.

The fear. Wrapped up with the love. And in a way, I swear they are almost one.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.