happy being trevy

She did everything right. We put our house on the market a little over a year ago. It sold remarkably fast. Literally, one open house and several offers later found us moving into my parents' walkout basement apartment. There were several reasons why we decided to sell and move in with my parents. Trevor's persistent seizures and living in a two-story house being a prime one. Years ago they'd outfitted their basement as an apartment. It was supposed to be our landing place when we were home on furloughs. Back when we thought our lives would be spent in Tanzania. There was no way we could know what a gift this little apartment would one day be. The move has grown our peace in many ways. One of which is Trevor having a Grams' game hour most days of the week. He was upstairs for his game hour when the third seizure of the day struck. She had yet to witness one of his "big, scary" seizures. Yesterday, that changed. Bristel and I were downstairs doing a...

And just like that, we're back to survival mode. Yesterday was a hard, hard day. His rescue meds required a higher dose than normal to break the seizures. We're not sure why. We're never sure why. The questions from neurology are always the same; as are the responses. Is he sick? I don't think so. Tired. Story of his life. Any other triggers you can think of? I don't know. How can I possibly know? If only we knew. His own broken body and brain are his trigger. I never say that out loud, but its frustration rings wildly in my heart. Jonathan held me and said it feels like we're watching him die over and over again. Every seizure is watching him walk to the brink. By now we've watched him die a hundred times. Except he doesn't. Except he is. His words are movingly poignant. I hug him tighter because there is a deep forging of hearts that walk through suffering and sorrow together. Yes...

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. ...

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 coul...