The Exquisite Joy of Nothing

In sitting down this week to write a post about the challenges and rewards of special needs parenting, I must confess, I’m struggling. Not because I’m feeling overwhelmed, but because I’m not. 

I have nothing to report. Nothing eating away at me of any particular urgency. No burning anxiety, new or familiar, keeping me up into the early hours of the morning. I suppose that alone is worth a short post.

While I was away speaking at a conference, Schuyler took the reading and math sections of the STAAR test, the Texas version of NCLB, and was able to do so without incident or drama. She was stressed about it, of course; the school has been scaring the crap out of her over this testing for months. But they’ve been scaring the crap out of every student in the school. Her little monster didn’t enter into it.

Schuyler had a good week. She took steps to build on a friendship with a girl on her Miracle League soccer team. She got a new video game system and played way too much Donkey Kong over the weekend. She had her hair cut and a splash of red thrown in, and no one at her school seemed to mind. (Hair not being a component of the STAAR testing, after all.) Schuyler lived a life not dissimilar to any other fourteen-year-old girl.

This week, we didn’t struggle to understand her, we didn’t have to manage seizures, and there were no bullies to deal with. The Internet wasn’t buzzing with an unusual amount of outrage, and despair felt far away.

It was a week where nothing of particular note occurred in relation to Schuyler’s disability. For families of kids with special needs, this can be a rare treat. A week without an easy blog topic is itself worthy of note.

There are monsters waiting on the path ahead. More seizures, more tests, more good people who don’t understand and more bad people who don’t care. But those monsters gave us a week off. That’s not a small thing.