happy being trevy

Refractory epilepsy is cruel. Not only does it harm his body, it also plays with my heart and mind. A good seizure day or two has me secretly hoping that maybe I've finally found the right combination to finally slay the dragon. Maybe it was that extra coconut oil, or that specific brand of magnesium, or the specially formulated B-6, or the new medication, maybe that was all he needed? And by the way, a good seizure day doesn't have to mean no seizures, simply fewer or less strong events will do. That's all it takes for my heart to begin brightening, like a drooping flower that feels the warmth of the sun begin touching her petals. Hope is reckless and remembers not. Positive, short term, responses to medications or natural therapies are known as honeymoon periods. Hope has amnesia and forgets that Trevor is a honeymooner. The trouble with honeymoons is that they all must end. Shortly after posting a cheery status updat...

When your child's health is in crisis, breathing alone requires more energy than you have to give. Trevor's health is in crisis.  He had a seizure this week that left us shaking and edgy. Hoping to God that we never see the like again. Praying the Diastat can stay hidden in the cabinet, not sitting there on the counter top taunting our hearts with it's horrible meaning. That prompted his neurologist to prescribe Ativan in addition to everything else. That has his neuro-surgeon emailing reminders his experience with radical brain surgery is heavy on the hope. That boils regrets to the surface, knowing we begged them to spare his motor strip when he was a toddler. Before words, so many beautiful words, and reading skills, and joy of free-limb movement, were known quantities and therefore grieve-ables when lost. Dear God... There were so many things I wanted to do this summer. Ghosts of plans undone in my day planner. Friends our hearts wanted to l...

We're not really the "make lemonade" type. In fact, Jonathan designed a new T-shirt brand on our commute Boston-ho this morning. "Life is Decent" You know you want one. Somehow we managed to chase away our melancholia and turn our dreaded day trip into a little family adventure too. His neuro's satellite office is just 15 minutes from Walden Pond. Trevy has been a huge Thoreau fan ever since attending a nature class at our homeschool co-op this year. It was a beautiful day and a magnificently peaceful trek around the pond. We were pleasantly surprised to find that most of the path was wheelchair friendly. Trevy was a trooper during the places we asked him to walk. As for the neuro appointment... Well, there is just no making of lemonade when you love someone living with catastrophic epilepsy. Unless it's watching his doctor's face light up when she saw our family in the waiting room.  I'v...

It's barely 7:30 in the morning and already Trevor is obsessed with an idea. When Trevor is obsessed - there is no rest. His current obsession: to make a Moana themed CandyLand game. It's supposed to be our Sabbath week. I'm supposed to have a week "off". I need a week off. I've spent the past 30 minutes making excuses and putting him off. "Mommy needs more coffee first" and "You woke me up too many times last night, give me a minute". Jonathan, who has a holiday today, decided to step in and is now printing up Moana themed characters and taping them onto the original pieces.  Trevor may not look it, but he's a happy boy. 

Trevor's seizures are not noisy or (externally) violent. In fact, aside from the times he might give a little gasp right at the beginning, they are eerily silent. Often, the only sound to be heard is us, murmured attempts comforting him. Or maybe we're trying to comfort ourselves. Since his seizures have aggressively reemerged, not a Sunday has gone by without their invasion. One day I'll find adequate words to wrap around how wrenching it is to have my voice lifted in worship during a favorite hymn, only to turn around and discover he's silently seizing. Sitting small and alone and seizing in the pew, while the rest of us, on our feet, sing praise. Feeling the squeeze of my heart that, had I not turned around just then, the seizure would have come and gone silent, unnoticed. Wondering how many have. That breaks me in the deep parts of my soul. The poignancy of the unassuming voices continuing in worship around us is not lost on me. To stand there, in the midst o...