When Dan Zanes came to Los Angeles, my world almost fell apart.
I didn’t even know who Dan Zanes was until I had my son. But I was soon schooled that he is the hippest kids musician around. And he was coming to town for a concert.
I ran to my computer and bought tickets immediately. My husband thought perhaps it was not the best idea, that it would be too much, too loud, for our then 18 month old son. Party pooper I told him and bought the tickets anyway.
See, Dan Zanes was important in our house.
I would blast Dan Zanes for our afternoon dance party. Benjamin, so tiny and with such blue eyes, would hang out on his polka dot blanket in the middle of the living room and I’d turn on the stereo. When he got a little older and was just learning to walk, he’d hold the side of the TV stand as the music played. He’d bop along, usually just in a diaper, his body completely committed to the sounds running through the room. Or I’d hold him in my arms and we’d swing and sway listening to the music and then pounce and twirl.
In these magnificent feats of living room fun, we were miles away from his troubled birth. It is a long complicated story, but simply, he was born the color of the operating room walls, a pale white, and was rushed into the Neo Natal Intensive Care Unit.
But after a couple weeks, we were sent home with him. We were told all was fine.
So we would while away the afternoons dancing and rejoicing, specifically to the Dan Zanes CD my sister sent me.
But when Benjamin was around three months old, I noticed a stiffness in his shoulder. A lack of motion in his arms. When certain developmental milestones came and went unmet, we visited doctors.
I searched their faces for answers. They did not know exactly what it was. Was it genetic or tied to his birth? Unsure, they still prescribed therapy, first physical, then occupational, and eventually speech adding up to a very busy little boy and a mother who spent much of her days in therapists and doctors waiting rooms where her mind had time to wander to imagine all of the scary outcomes.
I searched the internet for information about Cerebral Palsy, hypotonia, Pervasive Developmental Delay, Sensory Integration Disorder, Autism.
Eventually, most of these conditions would be crossed off the list, but then I did not know that.
Then my worry raged.
But life and Ben’s care needed tending to though. There wasn’t time for falling apart.
And so it seemed we were due an afternoon of great fun.
Dan Zanes here we come!
The morning of the concert, I glided with excitement over to Kinkos to print the tickets. Our printer was broken, thanks to Benjamin. But I was unable to print them off Ticketmaster’s site there. Undeterred, I decided it was that Kinko’s fault and headed to another on the way to the concert at UCLA.
But still, the page would not print. I could see the tickets up on the screen. There they were, our fun afternoon and I couldn’t get them into my hand.
Anxiety started to set into my world.
I hurried back out to the car to my husband and son.
“I can’t print the tickets!” I wailed.
Before my husband could even suggest that we not go, I hopped in the car and told him the Kinkos guy suggested printing off our laptop where we purchased the tickets.
My husband raced us home. My chest felt heavy. Benjamin happily hung out in the back completely unaware that his mother was bordering on hysteria.
My hands started to shake. My voice cracked with tears. “I’mmm reeeeallllly uppppseehhhttt,” I announced with my whole body. I collapsed in the passenger seat of our Saab, heaving.
My husband must have seen intense sadness and disappointed in me, as opposed to a ridiculous woman crying over a missed children’s concert, because he never once told me that it was just a concert. He never said he thought our son was too young for it anyway. He never told me to calm down. He just drove that car as fast he could until we were in front of our home.
I ran inside like a runner grabbing the baton with all her might and grabbed our laptop off the desk, hurrying back to Kinkos.
I slapped our computer down and The Kinkos guy did his thing and then voila, the tickets were printed. I feel I may have pulled him in and hugged him hard for his help.
We hurried to the concert and though the tickets sat in my lap, the tears did not stop.
There was silence in our car as the streets passed around us.
Perhaps it is not obvious, perhaps I seem like I am handling things, but I wanted to scream out, but was just too drained, that I feel very alone. I feel terribly sad.
This is not what I expected. Your child should not almost die on the day he is born. I should not be on the lookout for something wrong or different about him. My son should not be seeing a neurologist, let alone two. I should not have to battle insurance companies begging for more therapy coverage. I should not have to stretch my child daily until he and I both cry.
I just wanted to be normal. At least for just one day. I wanted to be a family that goes to a concert on a Saturday afternoon and is like everybody else swaying to the music having fun.
I sat quiet in the car, trembling.
Then we were there and miraculously not very late. And then there was Dan Zanes, our bringer of fun.
Bodies started to head down for an out-of-your-seats-front-of-the-stage dance party. A kids concert mosh-pit!
THAT’S where I wanted to be there.
I picked up Benjamin and slowly inched my way down the aisle.
He started screaming, “No!” With each new beat and each new step, his screams grew louder. Jay did not say I told you so, as he took him out of my arms and brought him to the lobby. But his look said it all. We took turns bringing Benjamin in and out from the lobby and the concert. And though I knew better, when he would calm down, I kept heading us towards the dance party.
They say you should dance like no one is watching. It is how Ben and I dance around our living room. But on that day, at that concert, I kept inching down the aisle, with my screaming child in my arms, trying to soothe him, trying to convince him of the good time we were going to have, because I wanted to dance, not like nobody is watching, but I wanted everybody to watch.
I wanted this grand crowd to witness us at our finest hour of fun. I wanted people to see us as the fun loving mother and son who laugh, giggle, spin, jump and have fits of laughter together. I wanted our living room dance party for all to see.
I needed people to bear witness to who we really are. But I fear they only see the stressed, overwhelmed mother. I worry they see only the challenged child.
I quickly gave in, hearing his screams, and Benjamin, Jay and I left the concert after only a couple of songs, never making it down the aisle.
We took our time heading back to the car. My disappointment lingered above us.
“Too loud,” another couple said near the vending machines.
“We asked for our money back,” said another.
Perhaps we were just like other families on a regular Saturday afternoon.
We stumbled upon some college kids practicing on the lawn outside of Royce Hall for a celebration for the Vietnamese New Year. They held a colorful satin dragon-head and flags and laughed as they stumbled their way through their choreography.
Benjamin became transfixed. He watched the colors wave through the air going up and down. He watched as they practiced their dance. And then he started to dance. There on the grass, he stepped away from us, his parents, and twirled in the sun, doing it his way, telling me in that moment that though he may do things differently, he will still do all the things that life offers. And he danced like no one was watching, to this new beat.