happy being trevy

Our morning work was interrupted by a seizure. Sometimes he's able to carry on after an episode. Bigger events leave him yawning and tired. He was yawny after this one.  I let him flip through our literature reading for the day while he recovered. Along with feeling the pages pass over his finger tips, he loves looking at the pictures and remembering the stories we've shared thus far. I consider these narrations, or signs of comprehension and growth. They are always sweet and rarely when asked for expected. A new delight is looking at the page numbers and feeling accomplished when noticing larger numbers. Evidence that he's beginning to understand the concept of time and energy spent and size differentials.  The Children's Book of Virtues is one of his favorite reads. I didn't anticipate his heart connecting so deeply, but it has. I'm sure the beautiful illustrations complementing the living stories play a role in his relationship. Sometimes I...

We were having fun running back-to-school errands with Grams on Monday when Trevor had one of his big, scary, pull-off-the-road seizure events. I tried to remain calm, but found myself shouting at Bristel. In her fear, she was repeating my name over and over again. In my fear, I lashed out at her. It was raw and crushing and terrifying. After the larger events, there is this span of tangible quiet while we collectively catch our breaths. Epilepsy's menace had reached in and constricted our hearts with all the terror stricken possibilities. Every person in the car was affected by that seizure. We needed a minute to recover.  Later, I held Bristel and wept with her. I begged her forgiveness, repeating, much like she had done with my name, how sorry I was and how I wished her heart didn't have to endure such crushing sorrow. That night I dreamed that I lost him in a crowd. He'd let go of my hand and simply vanished. It felt so real that it took me a minute after waking...

Trevor will often blame seizures on random non-preferred activities. If a seizure happens to occur while we're doing Math, for instance, he'll say, "That was a Math seizure. Math makes me have seizures." Of if one strikes while I'm insisting he complete his chores I'll hear, "That was a chores seizure. Chores make me have seizures." And so forth. He's surprisingly logical for missing the "logical side" of the brain. A reminder that we still have so much to learn about the brain and perhaps we should approach brain science with humility. His arguments are cute and funny. I gently remind him that I'm tracking his seizures and know that they happen randomly throughout the day and are not related to any particular activities. I hug him and express that we're going to live life in spite of seizures. I assure him that a healthy, robust life includes a blend of happy and hard activities. I'm pretty sure he's stil...

I think while I work. It's unintentional, really. It just seems that as my hands and body are busy, my heart finds time to wander and explore. Suddenly, I find myself contemplating ideas I don't remember actively pulling forward. As I puttered around the house this morning, doing things which needed done, I found myself contemplating some of the literature I've navigated this year. I was struck with how compelling are the stories which include the oppressed, the tyrannical, the rise of a hero, and redemption. I remembered Ivanhoe, and Robin Hood, and Ben Hur, who I am walking beside right now. As cheesy as it may sound, my heart swelled with the Galileans last night as Ben Hur defeated a Roman soldier and rose to hero status. I have always been a sucker for the underdog. Then I thought about how real life doesn't veer too far from these story-lines. There is a weaving of relations to be felt. How complex life and character and choice truly are! And how important it ...

I interrupted Trevor's morning ABA session to administer his meds. It's 9:30 and he's already had three seizures this morning. Two in the presence of his teacher. It's obvious she is profoundly moved each time she sees one, no matter how mild.  There has been much talk by him about his imaginary friends this morning: Shimmer and Shine. Evidently, these are some new Disney characters? As he swallowed his med-laced-applesauce, he said, "Shimmer and Shine have to drink their smoothies today." "Yep," I replied, "Even imaginary friends needs their healthy breakfast." He was quiet a moment. "Shimmer and Shine don't feel sick all the time." He didn't add the words "like me" but they were there. Hanging in the air. His therapist caught my eye and we shared a moment. I'm feeling emotional today anyway. It's a miracle I held it together when I saw her...

It took us a minute to figure out why he was exceedingly disappointed this morning.  Evidently, he'd pulled out his loose tooth last night and put it under his pillow without letting anyone know. The Tooth Fairy, thus, uninformed, failed to show.  Once we figured out what he was saying, I immediately flashed his sister the "stink eye" since she's the one who made the big buzz about the Tooth Fairy the last time he lose a tooth. I warned her it would cause trouble in the future. She just shrugged and flashed her dimples at me. No remorse!  I shared our plight on FaceBook and a sweet seizure mom friend offered to call as the Tooth Fairy and apologize.  Oh.My.Word. That phone call was priceless! I wish I would have had the forethought to catch it on film.  Trevor's face after the Tooth Fairy conversation... He's convinced he actually, really, truly spoke with Nanny Plum (from Ben & Holly).  While there...

I've been diligently tracking Trevor's seizures the past two months. I stopped using SeizureTracker because it was just too busy.  I tried the Epilepsy Foundation's My Seizure Diary, and it was even more difficult to navigate than ST. I needed to simplify. My brain can only handle so much right now.  So, I printed up a simple grid divided by hours from 6am-8pm. I don't know why I included 8pm, he's always tucked in by that time. Or the 1pm row, because that's his daily rest time. Anyway, I put a tally mark in the corresponding square each time he has an event. He's averaging 3 seizures a day. Sometimes more, but never less than 2. He's had a seizure every single hour of the day he's awake, except for 5pm. He's had seizures at 6, 7, 8, 9, 10, etc. But 5pm was the "magic" row. That blank row was like a little ray of light in this dark valley we're treading. Silly as it may be, seeing it tally mark free made me happy. ...

He had a seizure this morning that required pulling over on the highway enroute to VBS. Bristel was in the back of the van with him, on the verge of hysterics, crying, "Mom, he doesn't know me! He doesn't know I'm here! I don't know what to do!" Thank God Tobin was with me. Trevor had guilt tripped his big brother into coming as his helper today. I saw him out of the corner of my eye; with a maturity beyond his years, he was reaching for the Diastat. I was trying to stay calm and clinical. There wasn't a great option for pulling over, but I had to stop, and now. He had already been seizing for over a minute. Seeing how narrow the emergency lane was I began calculating how I would climb over the middle console and what we'd need to do to get his body in position to administer the rescue meds. Relief washed over us when we could see the seizure relenting before the 3 minute marker; before meds became necessary. As the sei...