I no longer know how to be in the world.
You know in the movie The Matrix when Keanu Reeves character, Neo, has the plug pulled out of the back of his head? And instantly he’s brought out of the dream state he was in and back into reality? This is how it is to be a special needs parent.
Sometimes you are dreaming. All is well, or you’ve grown comfortable with the fact that this is your life now. Maybe things aren’t acute and you’re getting used to your new normal. But then suddenly, while in the company of mortals, you are suddenly very aware of yourself. You look around and everyone is having fun. Except you. You are thinking about your life now, and how you got dealt a shitty hand, and how you no longer know how to have fun, or how to be in the world. You are sitting on another plane, another dimension. You’re allowed to be with other humans, but it’s like you’re never allowed to let go or relax again.
I am not me anymore. Not the me I thought I was. And truthfully it’s been years of dealing with tiredness and sick kids and so I don’t remember the last time I felt like me, or better yet, like what I presume everyone else in the world feels like.
But then it passes. Things are good again. Moments are precious. I can breathe. And the feeling fades. It’s going to be OK.