I’m not Always Grateful

I sat there bouncing my baby on my knee.

I was surrounded by people.

I watched the group of children singing Jesus Loves Me.

So casually. Standing in a line.

The youngest was 4. The oldest was 8. A boy. Cooper’s age.

I watched him specifically. He was wearing a tie. He was standing so still. Holding the microphone.

Then he sang his name. Four words.

‘My name is Ben.’

He sounded like an angel.

I realized in that moment I wasn’t breathing. I had stopped bouncing my baby.

I was studying him so closely.

He was blonde. He no longer had a baby face. He was just standing there. With the other kids. Singing that song.

I watched him sneak a wave at his mom. Quick. She snapped a photo. And he beamed.

I felt like I was going to be ill.

And all of a sudden I was angry. Like really angry.

But not at the little boy. And not at his parents. Or anyone around me.

I was angry at myself.

Here I sat. Bouncing this beautiful, perfect, feather haired boy on my knee who hadn’t make a peep the whole time we sat there.

He just smiled and every so often chewed on his feet. He was the perfect baby.

And here I was, thinking about autism. About the stuff my kid couldn’t do. About the song. And the awareness that he didn’t have.

I was mad that my son couldn’t be here with me. And because he couldn’t, either could my husband.

I’m tired of going everywhere alone. I’m tired of worrying about the future. I’m tired of the intensity. All the time.

And I wondered if those parents knew how lucky they were.

I felt my cheeks flush. Shocked by the intensity of my feelings.

So I silently scolded myself.

How could I be so selfish? And so ungrateful?

I have three beautiful children. And all three are healthy.

So what if one doesn’t talk. So what if he has autism. Right?

There are sick kids in this world. Parents that have to bury babies.

And here I was. Sad because my son has autism.

Sad because he is controlled by anxiety. And doesn’t speak. Because he’s never played with his brother. Or played a game with me.

Sad because he’s never asked me questions. Or said I love you.

Angry because he self injures. And sometimes kicks.

Sad because he can’t sing a song. Or even try to participate.

I’m telling you this because I’m not perfect.

And I grieve what almost is sometimes. I grieve the words. The playdates. The birthday parties. The hobbies. The sports. And what may never be.

I have this beautiful life. I lack for nothing really.

I love my boys more than I can even put into words.

And 99% of the time I know that.

But the other 1%. Well…

It is what it is I guess.

I’m not always grateful. Not all the time. Not every second of every day.

Sometimes I’m human. Really human.

And I wonder why that boy can sing a song. And stand still. And wave. And say his name.

And I wonder why he doesn’t have autism like my son.

I’m not always grateful. And you can yell at me if you want I guess.

Whatever you want to say…I’ve already thought it. I’ve beat myself up more than you ever could.

I wish I could be better. I wish I could see the beauty all of the time.

Maybe I’ll pray for that I guess.

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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.

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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 my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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