Hope, Grief, and Grace

My son Jack was diagnosed with autism when he was eighteen months old. It was a cold, gray afternoon in November. He was wearing a blue jacket.

He’s fifteen now.

A lot has happened since that day in November. I had three more kids and Jack learned to talk and then he learned how to pick the locks and run out the front door.

I chased him like my life depended on it, because it did.

Finally, we taught him how to hold our hand in the parking lot and the mall and the grocery store.

In fourth grade he got a part in the school play. He was a frog. He got very, very upset when other kids stumbled over their lines.

In sixth grade he started a new school.

He is a teenager now. He doesn’t run anymore.

He still holds my hand.

For years, I have alternated between hope and grief, grief and hope.

Hope is like a large bag I carry on my back. It is full of heavy, jagged rocks. I carry it around all day and I sweat and I tremble and I take in huge gulps of air.

I hope this new medication works.

I hope he sleeps tonight.

I hope.

I hope.

And grief? Well, grief is a box of feathers I keep in my room. And when no one is home, I sit in the chair and I open the box. The feathers float around me, seemingly weightless and insubstantial. Yet each one carries a dream.

Driver’s license.

Marriage.

Career.

All day long, I hold my box under one arm and clutch my bag over my shoulder. Onward, I march.

I have marched through tantrums and IEP meetings and my marriage and my life.

I march through the sad days, and the ordinary days, and the horrible days.

I thought if I just kept going, it would be okay. Not great, but okay.

Yet with every step, I have an ongoing narrative in my brain that I cannot stop—a silent catalogue of every move forward and the times we fall back.

He’s reading at a third grade level.

He said hello to the bus driver.

He won’t stop talking about Oreos.

He still picks at his fingernails until they bleed.

I am not doing this right I don’t know how to be better I want so much to be better.

Sure, some days are easier. My bag is lighter. I have a small spring in my step because his cuticles looked a little better and he only mentioned Oreos 1,278 times instead of 1,569 times.

Other times, I turned to the feathers for comfort. Alone in my room, I wallow in their softness. Sometimes, I even cry a little.

I hate to cry.

I don’t want it to be this way. I don’t want to only live in the space of hope and rocks and sadness and feathers.

Slowly, I have learned there is a third piece when it comes to mothering this spectrum boy of mine.

Grace.

I didn’t have a big a-ha moment or anything like that. There was no breakthrough, or reckoning.

I simply started to take it easier on myself. That’s all. I quieted the inner dialogue that ruled my day.

I closed the lid on the box after I chased all those pesky feathers around the room. I set my heavy bag down on the ground. And I gave myself grace.

You see, grace is in the knowing.

I know I am doing the best I can.

After all, I didn’t expect this and there is no manual for autism and it’s all very complicated.

I know this son of mine might not cure cancer, or solve the energy crises, or figure out the answer to the immigration problem, but still, the world is just a little bit better with him in it. The universe is bigger.

Grace is good.

It can save you, if you let it.

He still wears a blue jacket.

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.

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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