Holding Onto Light

Today has been a day filled with news of death in the special needs community. Some of it just a horrible misfortune in medical malfunctions, and some of it more sinister. It's hard to not find myself in tears over these things. The whole community is in mourning I think. When my community mourns, I mourn as well. It's too easy to think of how this could be us.

I had a post planned today. A sweet bit of fluff post. As I read these things, I felt like I couldn't write that post now. My heart was so heavy. But then as I played with Jude, and took a gazillion more pictures of her, I felt that maybe I needed to put that bit of fluff up. Because really what the post was about was about how Jude is here, loved, and typical...typical beastie that is.

And being a typical beastie is NOT like being a typical kid. After all the beasties are quirky and eccentric perhaps. Some of them have seizures and have to take meds every night along with monthly blood draws and yearly EEGs.

In our house, social miscues are pretty routine. Insomnia is a plaguing feature of our nights. And we all learn from the periodic fascinations that overcome a certain beastie girl. We also have to figure in ritual time before meals and leaving, meltdowns at the park, and a certain bluntness that crosses that fine polite line.

Some of us are anxious (mama's been kind of a freak about the whole dry drowning thing) to the point of panic attacks (thankfully few and far between)...an anxiety that too often paralyzes talent and skill.

There are toddlers amongst us who scream and cry a great deal. Who don't transition well....we're not sure where's that headed but we take it in stride.

Just for the record I didn't purposefully capture her screaming...this started off as a happy moment.

And then we have Jude who has that little bit of extra. It's all good.

Because really the beasties are just who they are: awesome, funny, smart, beautiful. This family. Being us. In our home, they are not Other. I wish sometimes I could build up a big wall to keep them safely enclosed within our walls. But that's not how things work. These beasties are growing out...spreading their tender roots along the ground. 

H and I don't shield them despite what others may think about our homeschooling. We talk to them openly about violence, racism, sexism, ablism. We tell them why we cry. We have conversations about things like Newtown, the way that Twitter handlers talk about girl gamers, and why people hate immigrants. Our children learn about this ugliness though from us not because some asshole called them a Spic or a retard. And I've watched as these beasties have grown into self assured kids who stand up for things. Who are not afraid to call people out on hate language or say "Whoa dude that's racist."

A couple of months ago, Camille had a dentist appointment. She was pretty traumatized and even started to cry in the exam room. Her visit months earlier had been rough and she associated the dentist with pain (who doesn't right?). As we waited for Umberto, Camille engaged in some behavior that was self soothing but not totally socially appropriate. She wasn't bothering anyone so I let her alone but I did notice two little girls, the kind who look oh so normal and oh so mean whispering about her. My impulse was to stop her but Camille didn't give a shit. She gave the girls one of her withering looks, and they kind of slunk down in their seats. 

I worry about my children who are not Other. Who have not grown up to think of themselves as Other. Will the world break them down? I like to think they will remain these towers of light that pierce the darkness of ignorance, hate, and fear. Until I have to set them free, I will hold onto them, fighting hard to make this a world worthy of them and others like them. Holding onto light is hard: it burns, it makes you raw, it opens you up to pain. But it also shines out through you, and if you let it it forges you into something lovely.