happy being trevy

The next time I'm asked, "What's the bravest thing you've done recently?" My answer will most definitely be, "Letting him start his own YouTube channel!"  Talk about vulnerable. But it's his dream. Who am I to crush it? Speaking of which... if you do one kind thing today, make it heading over to his channel and subscribing. Because I can't help him reach his goal of 4 million subscribers by myself, you know. 

In an ironic twist of motherhood, I find that I have less time than ever to document my heart and our days. I suppose I thought my time would free up as they matured. There has certainly been a lifting of the brunt of the physical care, but what has surprised me most is how the days can so quickly slip by even though my role has shifted towards more that of a counselor. I have yet to decide which is more exhausting: the physical care of young children or the emotional/mental care as they grow. Which is not to say there isn't a physical component as well.  Trevy, for all of his gains, still requires a moderate level of physical support throughout his entire day. As I helped dress him this morning, I paused, one leg in, one leg out, of his pants. The pause prompted him to look at me. Those eyes. So full of innocence and life and mischief. Oh, do I love his eyes. The force of his soul radiates through them and fills the room to max capacity like no other person I've ever...

Trevy had an appointment with his Talk Doctor (aka psychologist) today. We're working on identifying feelings and strategies for managing them. We were trying to create a list of calm down choices to reference when he's feeling really stressed. Talk Doctor: So, Trevy, what sort of things do you think you could do to help you calm down? Crickets Me, helpfully: Would going for a walk help? Or maybe playing a game? What sorts of things might we do to help you trap your sad thoughts so you can feel calm again? Trevy: How 'bout you, Mom? What things could you do to not be angry? Like you were today.  

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...