6.24.2019

a paradox of emotions

It's been a good month. He's only had a handful of seizures so far, although there are some new concerns which may or may not develop into something more. Only time will tell.

It struck my heart this morning how, often, when he's having a "good" stretch, the heaviness of the past 12 long years comes crashing in like an emotional tsunami.

It's almost as though when things are desperate on a day-by-day basis, I don't have time to feel. All my energy is turned towards survival.

When the desperation lifts for a moment and I can breathe again, the numbness of survival lifts too, leaving my heart exposed and vulnerable to all those unprocessed emotions I didn't have time for while in the thick of it.

That crushing emotion is not translatable with words and so I'll find myself weeping intermittently, for no evident reason, until survival mode hits again. It's such a paradox. I should be rejoicing; we haven't seen a seizure since the 12th. Yet, my face is drenched and my heart a crumbled mess.

Sigh.

Sometimes disability looks like streams of held-back tears, broken strength, and a heart that sigh with every beat, "Even so come..."

6.18.2019

sometimes we sit in the car

It's not always about having a seizure.


Sometimes the impact of his disability looks like sitting in the car while everyone else is touring a museum, because he just couldn't anymore. 




And I'm trying to push the trapped-by-disability-frustration down, as I remind myself, he just finished sitting peacefully through that 20-minute lecture at Touro Synagogue; a reflection of growth. I force my heart towards gratitude that at least I was given that gift. That lecture was the most beautiful I've ever heard. It was like a livingbook come to life before my eyes. And I can understand more deeply the beauty of historical story-telling versus the stale textbook. 


I would love to be touring the next museum too. I know he would have loved it. The magnificent art draws him in. But his body and mind refused would not cooperate. We made a hasty exit to the car before the meltdown could form in its fullness. Now he's content with a snack and his DS. It could be worse.


So, maybe next year we'll get to finally see the Chateau Sur Mer. This year, we sit in the car because that's what he needs. Sigh. 

4.23.2019

that time they had a brotherly row

There was a brotherly row in our home this morning over what brotherly rows are generally about. Which is to say: nothing. 


Big brother left for the day with devices, books, and notes for a college admissions meeting he has later in the day. 


Little brother, unbeknownst to mom, took it upon himself to restore the peace. 




People often speak of miracles in relationship to Trevor. Mostly, they have ideas of fireworks and full healing seizure freedom. Meanwhile, these are the miracles that leave me a puddle on the floor.