We Choose Joy, But That Doesn’t Mean It Isn’t Hard

This morning Jamie and I sat on the loveseat together at 7 am drinking our coffee. Side by side. We were smooshed in.

Cooper had the other couch to himself. He sat dead in the center with his treasures spread out around him. On one side were photos. To us they appear random. To him they are everything. On the other side meticulously arranged is a flyer for a local realty place, a Barney DVD case, a Pet the Cat book and the DVD, Blue Mountain Mystery.

Jamie and I are trying to chat, drink all the coffee and watch the news. Quite literally trying to wake our brains up. But Cooper is being himself. Blaring his Kindle. Some random YouTube video. Every few minutes he stands up, dances, twirls and rolls on the ground.

He is completely in his own world. He laughs this high pitched laugh and moves his body in the most bizarre ways. He throws his hands up, throws his head back and falls to the ground. And rolls.

It is quite the sight.

Jamie and I sip our coffee and watch. Every so often telling him to turn that dang thing down.

He of course smiles and keeps dancing. As if to say, ‘sure mom.’

One of us says something about about how we need to get way more serious about getting him to wear headphones. We will lose our minds if we don’t.

A minute later he decides he wants to sit between us. Only there is no room. But that doesn’t matter to him. He crawls right up our bodies. Our loud little giant.

One of us makes a comment about how big he is getting.

I realize he’s naked. Which is not weird in our house. Clothes appear to be optional for our child.

We joke about his lack of modesty. One of us always says a sentence about…this is going to be really weird when he is a teenager. And we mean it. What is this going to be like when he is 10, 15 and 20? Demanding he sit in between us? On our laps? Dancing to Barney. Grabbing our cheeks and turning our heads as if it’s the best thing he has ever heard.

I let myself think for one brief moment, ‘I’m scared of it all.’ I let it wash over me almost like a movie. I picture him at 180 pounds. Tall. Blonde. Handsome. I think about shaving his face. I think about him being a man. I think about bathing him. Dressing him. I think about pubic hair. I acknowledge my very real fear of the future.

His laugh snaps me out of it.

In an instant he is done sitting with us. He can’t get comfortable. And off he goes.

As he clumsily falls off the ottoman he does another dance. This time to Thomas. I tell him he is the best dancer I have ever seen. Jamie follows it up with….’just for the love of God child please put some pants on.’

He takes our praise and turns it up louder. We shush him some more. And he shushes us back. Which always makes us smile. His shush sounds like a freight train driving through the house.

In the next minute he notices that our bare feet are up on the ottoman. He is immediately fascinated. He bends down, really close and studies both of pairs of our feet. He points to each foot, babbling away about something. He then touches his forehead to each of our feet. And then moves back to the couch.

Jamie and I burst out laughing. We comment on how weird our lives are and that no one would ever believe it.

We sit in silence for a moment giving up on the news. We are both studying our naked child. We are watching him closely. This whole time he has never stopped making sound. They are grunts, squeals, non-speech sounds. All loud. All repetitive.

We watch him pick something up off the carpet, a piece of fuzz maybe, and pop it in his mouth.

I know what is coming next. I know what we are both thinking. I know my husband’s exact thoughts. Because I am thinking the same ones.

We are both wondering why. We are both wondering what our lives would be like if he didn’t have autism.

I say it first this time.

‘Do you ever wonder how we got here? Why him?’

Without looking away from his son he says, ‘every single damn day Kate.’

I let that sink in for just a second. I am not alone in these agonizing whys and wonders.

And then Cooper is lining up chairs. Our cue to get up. Start the day.

And just like that we are done wondering why.

I often think people assume that Jamie and I dwell on the hard parts of autism because I choose to share them publicly. I’ve been asked if our life is sad. Or been told that I clearly need therapy. Or told that I am negative.

A little secret for you. We don’t dwell. But we do acknowledge.

Maybe one day we did. A long time ago. When he was first diagnosed and we were looking down a path that didn’t look familiar. A life that looked to have more struggles than most.

Those years were scary. Our child seemed to be locked inside his own world. We spent our days trying to get help and to find our sense of normal. God those were hard years.

But today, we choose to see the joy. Now that doesn’t mean we don’t also feel exhaustion, occasional grief and thoughts of why. After seven years I can tell you those feelings are always there. At least for Jamie and me. They are under the surface. Mostly dormant.

But, we don’t dwell on those thoughts anymore. We acknowledge them. Because they are real and valid. And then we move on.

I literally just got home from Target and the first thing Jamie says to me as I pulled in the driveway is…’your son smeared poop on the wall. I sent you a snap. But on a positive note, he finally pooped.’

And then we moved on.

Raising a child with a disability is a journey of ups and downs and successes and regressions. It’s beautiful and it’s hard.

But watching the innocent, interesting, joy in this kid gets us through the days. Watching him experience the world and make it his own. Watching him dance and smile and twirl is enough for right now.

It’s okay to acknowledge the hard parts friends. But remember to always find the joy.

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 and subscribe to our newsletter.

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  • Arianne Randolph

    August 23, 2018 at 11:26 pm
    Reply

    You are a good mom. That is all I can say. You lead your life with love.

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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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