The Brightest Sky
Hi.
My name is Carrie.
I have five kids.
My second son, Jack, is diagnosed with autism.
I used to think the hardest part of autism was the day we got the actual diagnosis—the day I walked into the cold rain of a November afternoon, and attempted to zip my squirming toddler’s jacket.
I was wrong.
I’m wrong a lot, if we’re being honest here.
The hardest part is now.
Sure, a lot of it was hard—the nights when he didn’t sleep, the long days chasing him around and making sure he didn’t turn the stove on or run straight out the door and into the street, the late-night discussions about whether or not we should start medication.
My oldest son, Joseph, is thirteen months older than Jack. When they were little, they shared the same room, and every night I would lay them in their cribs and kiss their foreheads.
Now, my two boys are so different, it’s as though they aren’t even the same species.
One is visiting colleges and plans the next stage of life.
One holds onto my arm when we cross the parking lot.
One has a girlfriend, and a car, and a curfew.
The other stands in the grocery store, and fusses about what kind of peanut butter to buy.
One is studying things like management and business and internships.
The other sweeps floors for a nonprofit after school.
This is the gift/curse of brotherhood—the proverbial sword of two edges.
The gulf is widening. It’s like trying to raise the sun and the moon underneath one roof.
I expected this. Of course I expected this.
To expect it is one thing. To experience it is another.
Experiencing it is a little like taking the double-edged sword and shoving the point underneath your fingernail.
It doesn’t bleed a whole lot.
It’s not bad enough to go to the emergency room, or even call the doctor.
In fact, other people hardly notice it.
But it hurts like hell.
The thing is, I grew these two boys in my own body. I fed each one cereal from a small plastic spoon, and I pushed them around the neighborhood in a giant double stroller until my lower back ached.
I fiercely loved them both.
They should be the same.
They are anything but the same.
I fiercely love them both.
Yet, as I stood in the aisle of the grocery store while Jack rubbed his fingers along the side of his face and debated if Skippy was better than Jif, I felt a surge of rage so powerful, I turned the cart around and walked away.
Who could he have been, without autism’s sticky fingers leaving messy imprints of rigidity and anxiety all over his brain?
A baseball player, catching fly balls for the town league while the sun sets long and warm across a new spring sky?
An exchange student traveling across the world?
A musician? A husband? A father?
I mean, I’m not asking for much. I don’t need him to be the next Mozart, or the CEO of a start-up company.
I just want him to be happy.
I want him to have purpose.
And I want him to move out of my house one day.
There it is. I said it. I said the forbidden words.
I want him to move out of my house and live on his own and I will visit him and we will have dinner together and maybe I will help him hang some curtains, but I cannot do this forever.
And yet, I will.
I will do it because I love him.
I will do it because he is my son.
My beloved, mysterious son.
I don’t think there will be any curtains.
And he wants the curtains. That’s the very thing. He wants so much for himself, and right now, it all seems vastly out of reach.
Is this the weight of raising an unusual child? The constant comparison of who he is, versus an imaginary version of who he might have been?
I am trying to stop doing the comparison. I really am. It’s not fair to him and it’s stupid and I am wasting my time, but every once in a while, it happens.
We are making the best of it. I want you to know this. We are teaching him practical skills and showing him how to change the oil in a car and what to do if the water boils over the pot when he’s making spaghetti.
But what about other, more complicated lessons?
Lessons about loyalty, and love, and humility, and grace?
Maybe the hardest part is not today, or the day of the diagnosis, or the jacket-zipping.
Maybe it’s the not knowing.
It’s not knowing where he’s going to live.
Or what he’s going to do.
It’s not knowing who I am, as I navigate a life alongside this tricky spectrum disorder.
Who can tell?
I am wrong a lot.
In the aisle of a grocery store, I was wrong once more.
One brother begins to forge a life outside the house, while another brother stands balancing loyalty and love within his hands.
Joey. He likes. Skippy better. For when he gets home today.
There is more than one path to a life full of purpose, and meaning, and delight.
After all, the sun and the moon both share the same sky.
It was blue. His jacket. He kept trying to run from me, even as the raindrops dampened our lashes.
Fiercely, I love.
Written by, Carrie Cariello
Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.
She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.
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.
