The other day I was at the house of one of my favorite neighbors. We were discussing our children. Her kids are all in their 20s and her youngest is autistic.
She has read my book and blog and was talking about the similarities she sees in raising an autistic child and raising a gender nonconforming child. The stares. The judgments. The questions. The isolation. The impact on siblings. The self-doubt. The stress. The worry. The planning, predicting and protecting.
She, like me, feels like she always has to be predicting and planning for the moments that come after the one that is happening. We’re constantly trying to think one or two or seven steps ahead to avoid unpleasant people and uncomfortable scenarios.
“I hate that sometimes you don’t know that you’re having a good day until the day is over,” she said. “You wish you had known when it was happening but you were too busy doing everything in your power to make it a good day — or at least not a bad day.”
She was absolutely right. I had never thought about it.
At school, were worried about C.J. using the restroom privately and safely, were worried about him being bullied on the playground and we’re worried that his teacher will continue to do activities divided by gender.
At gymnastics we worry that someone will make fun of his painted toenails and long hair and make him want to quit a sport that he loves so much and has the potential to be really good at.
On a recent weekend getaway we worried when we saw another child staring at C.J., then snicker, then walk up to him, look him up and down and — with a disgusted look — ask if he is a boy or a girl.
We spend so much time worrying, predicting, planning and protecting that often it’s not until I’m lying in bed at night — mapping out the next day — that I reflect and think to myself, “Today was a good day. Today was a great day. We rocked today. I liked today.”
And that’s a shame.
I want to enjoy the day as we are living it. I need to worry less. That seems doable. I need to predict, plan and protect less. I’m afraid those habits will be hard to break. I’ve been doing them every moment of every day for the past four years. It’s become a way of life.
“I can’t not be thinking of the ten scenarios that could happen ten steps ahead,” I said to my neighbor.
“I know. It’s what moms do when we have a child with special needs.”
“It’s exhausting.” I said. She agreed wholeheartedly.
I imagined how simple life would be if we didn’t have to live like this, if we could realize as the day was happening that it was a good one.
I’ve been making a point to stop throughout the day and take inventory. Is it a good day? Yes. They’ve all been good days recently. What if a bad day happens? We’ll deal with it then, so let’s not worry about it now. That’s what I tell myself. It’s nice to hear. But it’s easier said than done.