happy being trevy

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.

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...

It's been a good month. He's only had a handful of seizures so far, although there are some new concerns which may or may not develop into something more. Only time will tell. It struck my heart this morning how, often, when he's having a "good" stretch, the heaviness of the past 12 long years comes crashing in like an emotional tsunami. It's almost as though when things are desperate on a day-by-day basis, I don't have time to feel. All my energy is turned towards survival. When the desperation lifts for a moment and I can breathe again, the numbness of survival lifts too, leaving my heart exposed and vulnerable to all those unprocessed emotions I didn't have time for while in the thick of it. That crushing emotion is not translatable with words and so I'll find myself weeping intermittently, for no evident reason, until survival mode hits again. It's such a paradox. I should be rejoicing; we haven't seen a seizure since the 12th. ...

It's not always about having a seizure. Sometimes the impact of his disability looks like sitting in the car while everyone else is touring a museum, because he just couldn't anymore.  And I'm trying to push the trapped-by-disability-frustration down, as I remind myself, he just finished sitting peacefully through that 20-minute lecture at Touro Synagogue; a reflection of growth. I force my heart towards gratitude that at least I was given that gift. That lecture was the most beautiful I've ever heard. It was like a livingbook come to life before my eyes. And I can understand more deeply the beauty of historical story-telling versus the stale textbook.  I would love to be touring the next museum too. I know he would have loved it. The magnificent art draws him in. But his body and mind refused would not cooperate. We made a hasty exit to the car before the meltdown could form in its fullness. Now he's content with a snack and his DS. It coul...

The line is indistinct; I'm not even sure when or if I stepped over it. Somewhere along the way, I stopped mourning his developmental losses so deeply. Somewhere along the way, I stopped trying to force him to breach the gap between his peers. Somewhere along the way, I have grown to see the beauty in his childlike spirit. I watched him run about the yard with a friend yesterday. He still runs like a toddler, you know. His big boy body lumbering about with the motor planning and ease of a small child; there is a deep, unspeakable beauty in the way he runs. Watching a young child bounding joyfully about is lovelier than words. It's magical. That same magic still glows about and radiates from him. There is a little place in a mother's heart that does not want her children to grow up and fly away. Trevor won't. He is my baby in the truest sense. That thought used to wrench my soul, and certainly, there is a sadness woven there, but there is beauty too...