happy being trevy

Capturing Trevy's joyful soul is a bit like sighting a fairy, which is to say impossible. Oh, we grab bits of it for sure. A smile here. A laugh there. The twinkle in his eye for just a second. But capturing the whole essence of him is elusive . This harmonica playing video comes mighty close. Right here is why we often say he's magical. Such a beautiful gift it has been and is to walk beside him.

They told us it would be a long day. They warned us we'd be the first in the waiting room and the last to leave. When a late night emergency surgery swooshed in, we thought maybe we wouldn't be the last after all. We were wrong. Not a soul was left in that waiting room with us in the end. Not a living soul. The last paid employee had left for the night and shuttered the lights, not fully, but mostly. So we sat there, waiting in the dim light with a dim hope in our aching hearts. Eventually, Jonathan went back to the "employee only" section to see if we could learn something, anything. He heard that the surgeon had nearly finished closing Trevor up and we'd soon be able to see him again. The vision of his swollen face, lying so still, all wrapped in white, an almost angelic glow about him, that vision will forever be seared on our hearts. They told us it would be a long day. And it was. In some ways, that long day hasn't ended. We continue ...

Recently we started meeting with a Talk Doctor (aka psychologist) for Trevy. My heart nearly drowned in tears when she drew this chart and asked him to show her how much he worries about his seizures. The dot on the left represents how much I thought he worries. The dot on the right represents how much he actually worries. I had no idea. 💔 💜

"Go with Sorrow and Suffering, and if you cannot welcome them now, when you come to the difficult places where you cannot manage alone, put your hands in theirs confidently and they will take you exactly where I want you to go."   - Hind's Feet on High Places There is a part of my heart that loathes sharing the bitter moments. There is another part which believes it to be deeply important. Sleep should bring peace and rest and relief from the worries of life. Sleep is said to be healing. Yet, for Trevor sleep has grown to be a time of turmoil and the very fight for survival. He didn't wake this morning healed and refreshed. Nor did I. I woke discouraged.  Because it is discouraging for rescue meds to gnaw the heels of nearly a month of seizure freedom. It is discouraging when your son, with his precious, child-like mind expresses that he doesn't understand why he has seizures and wishes he knew why. It is discouraging to watch him struggle...

This is especially for the moms who found their way here and are considering homeschooling, especially those with a Charlotte Mason bent, their special needs child this year... I know how scary it can be to take the plunge and decide to homeschool your child with extra special needs. Though his face doesn't show it, Trevor has very aggressive and complex needs, both medical and developmental. Oh, how I wrestled with bringing him home. Could I do it? Would he regress? Am I equipped to handle his very complex needs at home? What if the school won't provide on-going therapies (and they don't)? What if we can't afford to pay for them (and we haven't always and don't currently)? Is a Charlotte Mason approach right for him? All the questions, all the thoughts, all the doubts, assailed my heart as I was drawn towards that decision nearly 3 years ago now. It is NOT easy. Some days are entirely about one thing: survival. So much energy and patience is ...

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...