The Revolving Door.

Last week, I had a wonderfully refreshing getaway. It felt as though I was living someone else's life for a few days. My children, even KayTar, were just fine without me. I breathed a sigh of relief. A touch of normalcy. A non-event. The art of simply existing.

Josh and my mother both noted an increase in the eye deviations, but that is nothing. A blip. They don't seem to be disruptive for her, just a bit unsettling to witness. You want to snap her back to reality, but she comes back all on her own after a few seconds. Eye deviations I can handle. Monday, she started falling again. Spontaneous falling, sudden waves of dizziness, drop attacks, whatever you'd like to call it. We aren't sure what causes it, we aren't sure what it is. It has been a while, maybe a month or two, since it has happened. Monday it started and it hasn't let up yet. She isn't perpetually falling, but it happens sporadically and without warning. I've caught her twice when it has happened, but if I'm not looking directly at her and within arms reach, there is nothing to be done. It is hard for me to explain how out of the ordinary these are. KayTar is delayed and she has an ataxic gait, stumbling and falling are expected of her, although she is incredibly cautious and steady in her movements. This is not stumbling and falling. It is not a misstep, it is not a wobbling that causes her fall. It is the blink of an eye and she is on the ground. Her reactions range from a confused query of "Okay?" to can't catch her breath hysterics. She can land in my arms or break her fall with the coffee table. She can walk away unscathed, or with a scar.


Scene from a Mother's Day Massacre

I have to impose extra restrictions during times like these; absolutely no stairs, try and keep her off of raised surfaces altogether, try and encourage sedentary activity (sadly), and keep her from walking around with objects in her hands. She doesn't quite understand why she can't do certain things. Our OT told me today that recently she received an email with a photo of one of her patients with a fork through his nose, because he had a drop attack while holding it. It takes everything in me not to order a large padded hamster wheel to keep her in until this passes. When these things began, she was largely sitting and the falling was minimal. Every day she becomes more and more active, in spite of her challenges, and it is terrifying to know she can just drop anywhere without warning. I can't really make the environment safe enough for her. Every day this week she has had a minimum of three of these falls. It doesn't sound like a lot, but when you can't control the circumstances it is too often. Tonight I was reading BubTar's bedtime story while Josh and KayTar were downstairs. I heard something and looked up and KayTar was in the doorway. I'm sure Josh only looked away for a moment or two, but there she was, upstairs unattended. Nothing happened, but it COULD have and I hate having to even think about it. I hate that she is limited by the possibilities, as well as her own body.

We never know what to expect. Episodes slow, drop attacks stop, eye movements calm down...and then a week later everything has sped back up. She's having two and three episodes in a row. She's having multiple drop attacks on a daily basis. She's having exorbitant amounts of eye activity. When things are calm, our hearts rise up hoping silently that maybe this is the end of it. Maybe she's outgrown it, served her time. Maybe the last time was truly the last time. But it isn't. We know that. Even though we know, it always comes as a surprise when it happens. The hope might be silent, but it is no less powerful. It can fill your heart so much that it soars. You find yourself so high up with nothing to cling to but those same hopes that suddenly seem so wispy and transparent. Down you go. The rise and fall isn't always quite so dramatic, though. This is our life, our hand, our sweet KayTar. There are moments that do feel like that great big plummet, but not always, not every time. Sometimes it is more like a revolving door, you're in one minute and the next you're out. Sure, it might be cold and raining outside, but one more turn of the door and you're back inside, sipping your cocoa by the fire. Sometimes I just wish I could stay there.