There is an Exhaustion in Forever

It’s 12:49 pm here. I just crawled into his bed and wrapped my arms tightly around him as he sleeps.

A much needed nap.

I feel his deep breaths go in and out against my chest.

His course hair tickling my chin. The smell of syrup still on his cheeks, now covered in salt from crying. The smell of sweat. He is drenched.

I let my breath out. The one I’ve been holding for over an hour now.

We are home. Everyone is safe.

We survived. On this beautiful Saturday afternoon we survived a brutal meltdown.

I need to hold him. I need to remember that the meltdown is over. That no one got seriously hurt. And that this is my little boy. The one I am holding.

The meltdown lasted an hour. 60 minutes. Do you know how long that really is?

To make it worse we were in a car. Trapped. On the freeway during road construction.

Roads shut down. Bumper to bumper. The GPS screaming out directions. Inching along at 10 mph.  

People peering into our windows. Making eye contact with complete strangers as I held my 8 year olds head from crashing into the window over and over again.

And wondering, why do some families get to go and have fun? Why? A trip to a park, no problem.

For us it takes intense planning. Snacks, rewards, an iPad, WiFi,, timers, ‘first-then,’ negotiating, leaving abruptly, and a whole lotta hope.

With the first scream we knew he was gone. Our destination an hour away.

I can’t really describe the sounds he makes.

It’s unlike anything I have ever heard from a human. Deep. Almost like a growl. Purposeful. Meant to get a reaction.

Repetitively over and over again. Increasing in volume. His feet kicking and pushing on the seat in front of him. His hands banging on the plastic of the door.

We can’t think. That’s another thing the world doesn’t understand. There isn’t a 5 second time out from a meltdown. It’s constant. Increasing with intensity.

As his parents we should understand the causes and the whys. This is our son. We are supposed to know everything.

Only the cause of the meltdown could be anything. The traffic. The sound of his brother babbling. A headache. The way the leather seat feels on his neck. The WiFi not working fast enough.

In a way we feel like we live our life walking on eggshells. Trying not to turn left, or stop at stoplights, and praying that no one cries. And making sure not to relax too much when it gets easier. Knowing it can always change.

We had to pull over twice. It got too dangerous. The screaming got too intense. The kicking, and swatting, and flailing. The unbuckling of his seatbelt as if he was looking for a place to run.

Once on the side of the road. Cars racing by. The booster seats rearranged, praying that will do the trick.

But it doesn’t.

Once again in a grocery store parking lot. Me moving him to another seat as people load up their groceries and pumpkins. Smiling. Waving to neighbors.

Don’t mind me I thought.

Did you know car windows and seatbelts are perfect for self-injuring.  

Shoes were removed. iPad taken away after it hit his head for the third time. My seatbelt removed so I could hold his hands and face.

The baby crying. Thankfully Sawyer was watching Pokémon and appeared oblivious.

Jamie turning up the radio. To cover the sound.

We thought it would be a good day. A trip to a park. As a family.

But just like that, like the flip of a switch, we lost him. My sweet boy almost unrecognizable. Only to return when we pull in the driveway.

All of us exhausted. Sweating. Wondering why. Why our family. Why our son. And will it always be like this.

Why do some kids get to enjoy themselves? And others don’t?

Why are some kids riddled with anxiety and ADHD?

Why do some families have to accept that it will always be hard? That there is no carefree? Or relaxed? Or even…fun.

Two parents hugging after. Trying to figure out why and how they can do better.

The only answer feeling like more isolation.

But mostly wondering if this is forever.

No one can tell us. No one can tell us if it will get better.

So, as parents we just keep doing, trying, jumping around, one step ahead, to make the world easier for him.

To make the colors not so bright, the sounds not so loud, and the demands not so scary.

Forcing ourselves to believe that if we just do more, it will get easier.

But when you are in the middle of it, absorbing all the elements, the screaming, the hitting, the damage this is causing your other children, the stress on your marriage, and the pain your child is in, you will feel yourself go numb.

Because there is an exhaustion in not being able to fix a situation.

So you just hold on, and pray you all make it through.

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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.