I posted a school photo of Mark on Facebook and Instagram, extremely happy with how beautifully my precious boy was captured, dimple and all. He smiled with his entire being and it showed.
And moments after I posted the photo, the thunder and lightening started, and the storm began.
Mark had his iPad and he was perseverating over a game that asked him to pick what his bed looked like. Mark sleeps in an enclosed bed with tall walls which keep him safe, and free from escape, and of course the game did not have an option like that. I can’t communicate that to him, as much I tried. And he lost it.
So we did what we normally do.
The script unfolded like this.
Quick, hide the iPad.
Alexa, play Lumineers.
Alexa, turn up the volume.
Mark, do you want sticks? Long pause.
Pretzels? Long pause.
What about cookies? Shorter pause.
Crying is intensifying.
Oh look, Mark! Your favorite street signs. I precariously present each one as if they were precious gems.
Not impressed.
We teeter down the stairs as I try to encourage him to independently walk while also supporting most of his weight persuading him down to the basement.
How about a ride in your swing? His arms methodically pump at his sides filled with nervous, anxious energy. Face red, teeth gritted.
I’m not getting it. I don’t know what will fix my sweet, incredibly frustrated boy. Anxious I can’t think straight. I just want it to stop.
I put his rigid arms into each of the sleeves of his jacket.
Mark, let’s run in the yard! I coax him outside and encourage him to take off and breathe some fresh air.
He takes a few steps onto the patio, and freezes, then begins aimlessly running.
What about your favorite You Tube video? A is for Apple, Ahh Ahh Apple. B is for… I run toward him, arm extended. Can you hear it? Do you need the volume higher? Why can’t phones be louder?!
I chase after him. He heads for the front door. It’s locked. He pounds his little fists against the door in defeat.
I sprint to the back door and shout for Ike to run upstairs and unlock the door for him.
Ike heads upstairs. It takes too long. Mark runs again away from the house.
The sobs are louder. I watch as he sprints across the property running his fingers along the mesh wire on the inside of the split rails of our fence. I’m thankful for the fence. Really thankful.
I watch Luke watch Mark, and wonder if this will always be normal to him. Watching his brother unravel while the family tries to problem solve and unsuccessfully intervene.
Mark’s crying is louder and harder. He hurts. I hurt. I sink into that dark place. The place where helplessness has a new meaning.
Jillian feels it too. She sprints out to escort him back inside, speaking softly and sweetly to him as she holds his arm, guiding him back to the house.
Ok, Mark. I tell him, I’m sorry, outside wasn’t it.
Back in the house, past the toys I had hoped would entice him, and up the stairs to where the storm began.
How about Word World?
Ike kicks off his shoes, scoops up his boy, and tightly cradles him in his arms under a blanket on the couch. He calmly holds him as Mark continues to cry. But with each moment like this on the couch, his show playing, and the rest of us just sitting in the living room, watching and waiting, Mark’s breathing slows, the tears dry, and the storm surge recedes.
Exhausted and depleted, I slump in the recliner as I watch him eventually hop down and begin to play with his prized possessions, the wooden letters that make up his name.
And the rest of the evening was normal. The meltdown was over, and the seas were quiet, just like they were before storm began. His dimple on his cheek beaming, as he peacefully plays with his letters. It was as if nothing had happened. Absolutely nothing.
The storms have no warning. No forecast and no explanation. They are a product of limited communication, a low frustration threshold and an inability to regulate the central nervous system.
It feels like they last for hours, but really it’s probably minutes. They feel intense because they are, but they don’t define him. Or us. They are what they are, and we try our best to weather them with him.
Between them, we talk about how we could have navigated something more successfully, how we can avoid one in the future and what clues we might have missed. We think, we ponder, and we pray. And we try not to think about what this may look like years and many more pounds from now.
But in this moment, right now, we know that loving Mark during a storm is desperate, painful and yet such an incredibly beautiful honor, for all of us.
