The neutrality of peace and the certainty of chaos

If anyone is still out there, you’ve noticed I no longer write here. It’s not that life is not still wonderful and confusing, but that I’ve accepted the wonder and confusion for what it is, and it’s softened my desire to publicly ponder. Quiet reverie.

I feel more comfortable now, in this unique-ish mothering role – a little less bewildered and clueless, and a little more in-the-know and fortified. And with that, ready to move on to more bewildering things that I am clueless about.

I’ve started a new business that has been slow (so slow) to ramp up, with little (so little) time. It is named after A and called Arch Inclusive. The services I offer are the services I currently know how to do, and it’s nothing too exciting really, but still exciting. I have been working in this field (digital accessibility!) for 12 years now but have dreams to get more real about it all. You know, make a difference.

I won’t share any specifics that illustrate the enormity of my vision, but generally, I hope to grow a business that not only supports, but demonstrates, the significance of an inclusive community.

A brief update on our guy’s epilepsy, while I’m here: success with cannabis, then rocking the boat with weaning the keto diet. We’re currently back to square one seizure-wise, but with previous successes in July (5 seizure free days in a row!), we are optimistic about finding our footing once again. Slowly, surely, as with everything.

Epilepsy and neurodiversity (can get along)

Coming off the heels of a post about numerous seizures, it might be a good time to delve into the whole “this is a gift!” vs. “this is a terrible sickness” discussion that seem to plague many a special needs community…

AHHHHH.

We just cannot think of people, inherently complex beings, in polarizing terms. Neurological differences can sometimes come hand-in-hand with neurological disorders like epilepsy but the latter cannot be used to define the former as pathological.

If someone has depression, we would not consider his/her entire being as diseased, but recognize that they are suffering somehow, and work to help ease that problem. Perhaps this is a shoddy comparison, but you get my drift, right? In fact, having gone through depression myself in the past, it’s often something I look back on lovingly as a very hard time that gave me immense, grounding knowledge.

Brains are infinitely complicated computers that can sometimes run into wiring issues – it happens to every one of us. Negative thoughts, obsessive thoughts, headaches, vision issues, fatigue, you name it… some obviously more serious than others, but all possible symptoms that can happen as a result of just having a brain. With stigmas, our culture has come to categorize some symptoms as more meaningful than others. The more chronic or holistically-affecting, the more it leaches into defining the person by that issue… and sometimes influencing whether we choose to pass that person over, or invest our time, love, commitment, etc.

If you’ve read other posts of mine, I can sometimes get very reverie-y about the fact that A is an incredibly interesting kid because he is neurologically different. I really do believe in and celebrate neurodiversity, all of the time. To me, being interesting is superior over being typical. I don’t mean neurotypical, just typical… fitting in, being predictable, operating on automatic, etc. But I try to keep myself in check with the whole “he has superpowers!” or “he’s totally the best BECAUSE he has disabilities” because… sigh. His epilepsy is an endless fucking bummer, and I’m sure he’d likely cash in his motor planning issues for the ability to walk and talk in a second. Let’s stay real.

But here’s the thing, I think: innovation comes from adaptation, peace comes from letting go, acceptance, and appreciating the good things when they come, wisdom is born out of struggle. And A is in a position to experience all of these things, always. It’s all he’s known. So it’s inevitable that in time, he really will become an exceptional human being. Not because of his disabilities, not because of his superpowers, not because he is sick, not because he is neurodiverse, but because he is simply human.

If that seems muddled, it’s because it is.