I don’t like to use the word normal anymore. Not since Davey was born. So many things happened between August 2001 and into 2005 that I now understand normal to be a cardboard construct of our own making. So what I say instead is “typical”. Like this, “Davey learns more slowly than typical kids.” Or “Typical pregnancies involve one baby.”

In the space of a few short but intense years, my perspective shifted, permanently and inexorably. Uncertainty is the new normal. Life, she likes to throw curveballs.

That’s why I recognized the man and his son. It wasn’t the son’s slightly odd behavior, not disruptive, nothing overt, but just off-kilter — atypical. Sure, I noticed that but what caught my attention was the look in his dad’s eyes and the tone in his dad’s voice. As he tried to get his nine-year old son interested in the turtle or the crabs, as he quietly pleaded with his son to stand up, to look, I recognized a father’s need for something of the experience, this day with his child at the nature center, to be normal.

Ah, that word!

I watched them then looked away but tried not to seem like I was looking away deliberately. I wanted more than anything to let the dad know I understood. I wanted him to see me not as yet another person noticing. I was noticing, of course, but not for the reasons he might have assumed. I hoped he’d seen Davey, who was with Dex a few displays behind me and the rest of the kids, and hoped he made the connection.

I know how it is - wanting that sense of normalcy, wanting to not stand out. But it’s more than that. Or it’s not that at all. Because, thinking of the times when Davey has acted up in public, thrown himself down and kicked off his shoes and wailed in protest, acted like a two-year old in a five-year olds body, I am never embarrassed by him. 

What is it then? Is it normalcy I want in those moments? Am I wishing he were a typical kid, not a kid with Down syndrome?

This summer, when I took him for swim lessons, we had some good moments and many bad moments. In those bad moments, what I wanted was not for him to be like every other kid, not to stop calling attention to us or disrupting the class - nothing like that. What I wanted, what I desperately wanted, was for him to get something out of it. I wanted the spark. That moment of connection when it clicks for him and he does the thing I have been asking of him - paddles his arms or notices, really notices, the turtle, and then turns to me with a grin, clapping for the sheer joy of his discovery.

Normal has nothing to do with it. My life, my family’s life, what we live and feel every day, with all that seems to fall outside the lines, is as normal as life comes. I think what it is is disappointment. Not disappointment in my child, never that, but rather disappointment at a missed connection.