happy being trevy

The last three days have brought a bit of a reprieve. He only had one seizure each day (that we observed) and they were quite mild.  Today, three horrible tonic-clonics savaged him before lunch.  Sigh.  In between the heartache we had this sweet adorable moment... Me: Trevor, it's time for your Math test. Trevor: Okay, Mom. Me can take it this way? (observe the lounge chair style set up) Me: Sure, but I want you to do your very best. Him, clarifying: Like, no funny business? Me: Right. No funny business. ~pause~ Him: Can I draw Bach smiley faces on my test? Me, biting back my smile: No, that would be classified as funny business. Trevor: Okay ********** I let him add a Bach smiley face to his test AFTER it was complete. I love his interpretation of the wig. lol 

We heard the pitter patter of feet shortly after he was tucked in for the night. Technically, it was less pitter pattery and more stomper stompy. Because he does nothing gently. Either way, it required investigation. We're sticklers for bedtime. So, up Jonathan went to see what he was doing. He found him laying on our bed gazing out the west facing window. Jonathan asked what he was doing.  "Watching the sunset, Daddy."  And that's the story of how a coupla stickers turned into big softies.

Trevor doesn't really nap nap anymore, but he fatigues and so do I , which is why I still require him to have an hour rest time each day. From 1-1:45 he is allowed to "read" in bed. At 1:45 he can holler down the stairs for his iPad. And trust me, at precisely 1:45 every.single.day his little voice comes floating down the stairs. "Oh, Mommmmmmy, it's time! Mooooommy!" Usually one of his siblings delivers it to him. Big kids are so handy.   He can then have his iPad in bed until he's ready to get up; usually around 2:30ish. Trevor is a creature of habit. One his habits is grabbing books to bring to bed. I used to keep cute little, pre-filled bags of books. It was so nice and easy. He could choose a bag and wha-lah, we're done. Evidently, he's decided that's for babies and he's not a baby anymore. He made quite the convincing case that since he's a big boy now, he should get to choose his own books. I've agreed and a crate of...

Tobin came to find me; the boys had been playing Mario Kart. His face was grim; his eyes sad. I knew his words before he uttered them. Even still, I waited. I know how important it is to have someone bear this sorrow with you. He'd held Trevor through a seizure. He'd felt his brother's body pulsing. He tried to talk to him even though he was unresponsive. My shoulders like lead, I dropped what I was working on. Trevor was sitting Indian style, quiet and placid after the storm, on a turquoise IKEA chair. When he noticed me, he reached his left arm out for a hug. His right arm remained limp at his side. Probably still weak from the seizure. I wrapped my arms around his little body and asked him if it was over. His head nodded yes against my shoulder. I felt his left hand softly patting my back in a way that seemed as if he were trying to comfort me .  These moments are dripping with dread and sweet sadness. And ever my heart cries out... E...

Bristel offered to tuck Trevy into bed tonight. Her eyes were shining when she came back downstairs and declared him the cutest kid ever. She'd told him that sometimes she comes and checks on him while he's sleeping. That she even gives him a kiss on the cheek, but he doesn't ever wake to know it. He was very confused why she would "look at" him while he was sleeping, so she confided that she worries about him sometimes. As she was leaving the room he said, "Bristel, you no look me when I sleep tonight."  She asked him, "Why, Buddy?" "Because I be okay," he reassured her. And that was when, she says, her heart melted completely.