happy being trevy

A whirlwind trip (or rescue mission, as Jonathan likes to say) to New England was not on my 2025 bingo card. And yet. We are at max dose of Xcopri, and while it has given us a respite, it has not been curative for Trevor. We have slowly watched as his seizures are creeping back up in number and visual intensity. Meanwhile, I've been observing anecdotal stories about the benefits of red light therapy flowing from families who — like our own — will try what appears to be desperate measures on their own. I am of the persuasion that families are where the best science starts, and is always more honest and moves faster than the mainstream. As we started diving a little deeper, we learned of an adjacent study launching. In Boston. Like, right this minute. Up and back in four days (including schlepping through the weather all day yesterday!) — and here we are, ready to give this a go. As I shared with the medical team, we wouldn't have made such a crazy move if we didn't have a li...

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.

Trevy can now complete several school tasks with complete independence (after direct instruction has taken place).  As a former missionary and a woman of faith, I've been asked frequently to share stories of miracles. Mostly, people are looking for the whiz-bang stuff. The more whiz, the more bang, the more enthused they are. Most of the miracles I've observed would be more aptly classified as mundane, than whiz-bang. I am persuaded real miracles look much more like this: Faithful, consistent, little by little, inching along — often not even daring to give your "someday" hopes real form but letting them sit in your heart as a shadow — then one day you look up and that shadowy hope is sitting at a desk working out math problems while you chop up veggies.

Trevor's eyes have always been magic.   I watched some old videos this week and was once again captivated by the way his whole soul radiates from his eyes, even as a toddler. It's as if all the words his mouth will never have the skill to find come beaming through his eyes instead. Like his heart language is soul speak, not spoken words.   He's had a rough seizure week. Like, rescue med rough.   This suffering of ours. How much can one family take? How much can his body bear?   Last night, as we snuggled in bed together, there it was. The magic. He turned his head my way, and his soul was reaching out for mine. We lay on our pillows just staring into each other's eyes. No words. No barriers. No secrets. No bitterness. All eyes. All love. All trust. All soul.   And it was breathtaking. It was beautiful.   Spontaneous tears started welling, then dripping down my cheeks. I haven't stopped weeping since. This journey is so hard and heart-wrenching and bone wear...

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...

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...

There was a brotherly row in our home this morning over what brotherly rows are generally about. Which is to say: nothing.  Big brother left for the day with devices, books, and notes for a college admissions meeting he has later in the day.  Little brother, unbeknownst to mom, took it upon himself to restore the peace.  People often speak of miracles in relationship to Trevor. Mostly, they have ideas of fireworks and full healing seizure freedom. Meanwhile, these are the miracles that leave me a puddle on the floor. 

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...

His mind and body had only just given way to slumber last night when the convulsion attacked. There is something primally heartbreaking about seizures wrenching him from sleep.  Tears don't come often anymore, but when they do it's torrential. I laid in bed and wept half the night away. I wept for his physical suffering; visions of his confused face still swimming in my mind. I wept for Bristel, whose love held her in the room until it was over even though her dad and I were both there. I wept for Tobin, who sauntered in from a youth group outing, only to watch his face fill with knowing sadness when his eyes fell on the rescue meds still lying haphazardly on the chair. I wept for my husband, who I knew would spend the night restlessly trying to sleep while waiting to feel the bed shaking. I wept for the selfish way my heart deals with his disease, often despairing far more than he does. I wept with how I wrestle with the truth that he is not mine, never was, and believi...

4:30 am. Tonic clonic seizure. I sleep. Jonathan lets me. Tobin wakes. For all the ways he drives me bonkers, crumbs everywhere, bathroom messes, stinky shoes, for all the ways, he is always the first to wake and be there to help through the seizures. The boy whose fear used to make him run during thunderstorms now stays, calm and present through his brother's, no matter the hour. A minute and a half. An eternity. The seizure releases. Trevor's body is ravaged. Along with the hearts of his brother and father. He's exhausted. His sleep is restless. A curse of seizures, being so very tired yet unable to find peace in rest. I wake. My first stop is coffee. My second the couch and laptop. Though I peeked at them on my way by, I am yet ignorant. Jonathan finds me. His sigh tells me everything. Sadness etched on his face. He gives me details. Seizure Tracker is updated. Trevor finally wakes. He climbs in m...