happy being trevy

"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...

It seems every post I write these days is lament filled. I hate that. I don't want to be sad, defeated, exhausted from depression, anxiety, and stress, but I am committed to being honest.  This might be uncomfortable, but this is honest. If the seizures don't knock him down, rest assured the meds will.  Below is what a medication increase looks like. Notice the similarities to postictal events? This is one depiction of why I am desperate for non-pharmaceutical treatments.  Quality of life matters. Pharmaceuticals have their place. I would never want to withhold them, t hough many are artificially withheld due to pricing . Even still, we use them because we must. But when you've tried over a dozen with varying degrees of success, none permanent, all with significant side effects, it's time to move on. It's time to get creative. Quality of life matters. This is no way for an eleven year old boy to live. Spending half his...

Yesterday started with a long seizure which left Trevor on the couch for most of the morning.  He's started perking up a bit by mid morning. We were able to do a little math, reading, and writing with relative success. At his suggestion we even walked up to the local corner store for his daily dose of sunshine.  After his daily rest hour he was attacked with another seizure, longer and stronger than the first. It often seems like he's not breathing during his complex partials, but this was the first time his lips turned blue. It was just Bristel and I at home. To say we were terrified would be an understatement. I keep a pulse ox in our emergency backpack, which I'd grabbed. The pulse ox revealed that his oxygen was quite low, reading between 60-70 for a minute. His heart rate was erratic. His lips pinked back up, but his oxygen stayed in the 80s for quite awhile after his seizure. I've suspected for quite awhile that he's ex...

The sunlight. The sweet face. The concentration oozing from his pores. The joy I could see brewing in his soul at a job well done. All these ingredients swirled together to fill my heart with an "I love homeschooling" moment this afternoon. Which was much needed after the birthday angst he gave me this morning. The beast! He didn't even wait until I'd finished my coffee before he began with the whining and emmy worthy tears over wanting his birthday present TODAY. For a minute there I wasn't sure we were going to survive. But he rallied and I captured proof that requiring patience will not actually kill him. Though I'm pretty sure I noticed a few more gray hairs winking at me as I passed the mirror. Now to make it through until Sunday. We're planning to surprise him with an April Fool's birthday rather than making him wait until the 3rd.

Ominous.  The only word I've found to come close to describing how it feels when we know a seizure is brewing. Ominous hangs in the air when he incessantly yawns and expresses fatigue. We have learned that these are looming seizure markers. Ominous follows us up and down the stairs while I'm always making sure, often to his chagrin, to put my body between his and falling. Ominous has us jumpy because he's hungry and it would be inhumane to tell him no eating until the seizure passes, seeing as we don't know exactly when it will come. It could be in a minute or it could be in an hour. All we know is that it's ominously looming. Ominous sits beside me while I watch him play the Wii in the early morning hours because it's an easy way to keep him contained when he's restless; when his body can't relax because he too is subconsciously aware of the ominous in the room. The seizure finally came while he was laying in bed watching Kids' Yo...

Cleaning is my stress relief of choice. Which is why it's been a purge-palooza here lately. Yesterday, while clearing out an ancient filing cabinet in the basement, I stumbled on an old journal... 

He's always exhausted after his longer complex partials. An irony is how the tonics look so much more violent on the surface. Sometimes they hit with such force that he, literally, is spun around in a circle. Yet, for some reason, perhaps it's because they self resolve in less than a minute, he's able to carry on with just a yawn or two. He even told me the other night that he'd had a good day because his seizures didn't make him tired. He had over five tonics that day, but no complex partials. Yesterday morning a three minute complex partial left him down for the count for hours. It was the first time he actually fell asleep during the recovery. In a sweetly heart breaking way, his four legged best friend curled up on him while he sleep off the fatigue. I often consider how thankful I am that we can home school him. I'm not sure my heart could endure knowing he felt like this away from home and those who love him most. Later...

We didn't see it. But then we didn't need to. We know the signs of the aftermath. Only his longer events leave him so spent. For hours he'll be near sleep. Unable to lift his head. To form a complete sentence. To remember what month.  Or even what day it is. Epilepsy is a thief. Always on the prowl. His is tired but peaceful now. He is loved. His is comforted. His eyes no longer look frightened. Just tired. This soothes my heart a smidge. Yet knowing that we didn't see it. That he was alone when it struck. I suppose I should solace knowing he doesn't remember. My heart is a constant ache. Now always on the surface. But never not there. 

Our day started with a two minute seizure.  A seizure which stole energy and joy from him for hours and destroyed my well-laid plans for the day. His short seizures don't physically phase him much. He has one. He moves on. These longer (anything over a minute) events lay us all flat, even when they only two minutes in length. Thankfully I caught this one on camera for his neurologist. She hasn't observed this presentation yet and asked us over the weekend if we could try to catch one. We only caught 10ish seconds of the seizure event itself, which is noted right at the beginning of the video. But also his postical period of slurred speech and confusion is important information to have and see.   After the seizure passed, and I caught my breath again, I proceeded to finish the interrupted math lesson with his sister.  I let him lay on the couch watching Curious George. Honestly, I would have let him watch all day long if he needed to, but after ...

I incorporate a massage into Trevor's daily schedule. Not only is it a calming time, it also provides us with speech expansion opportunity. I'm all about infusing therapeutic goals into daily life, as opposed to having specific blocks of time set aside. He's very thoughtful and chatty when he's relaxed. So we talk.  One of his favorite topics of conversation is whatever book I happen to be pleasure reading at the moment. He's noticed me reading my Kindle each night and once asked what book. It was At the Back of the North Wind. Ever since, it's been a thing for us during his massage time. He loves my re-tellings and is surprisingly capable of digesting some of the more complex elements of the story-line. His thoughts will often take me by surprise. They are not articulated with grammatical perfection, but they are whole, rich insights which prove the miracle that we are more than the sum of our physical parts.  Currently we're discussing Les Mis...

We're going on nearly a year since Trevor's relapse. That's nearly a year of daily seizures. Some days better. Some worse. None seizure free. This relapse has been incredibly harrowing. Honestly, at times I feel as though I never knew anything about epilepsy at all. These seizures and the care required are so different from his Infantile Spasms. We're now in a world of timers and frantic calls to the neurologist late in the evening and always balancing on the brink of calling rescue. I don't remember ever calling the neurologist in tears when he was a baby. His spasms, while sad and development stealing, somehow were never as terrifying as what we're dealing with now. Every time he has an extended seizure, and he's had several already this week, his very soul seems to be floating between this World and the Next. While I have great Hope about that which awaits us, I am not ready to say an earthly good-bye to my son.  I'll spare you all ...

"The most brutal part about it is that one minute he's jumping over puddles and just a little boy alive with joy. An hour later he's tired out of his mind and doesn't even know what day of the week it is." This was Jonathan's summary of life with catastrophic epilepsy after Trevor's longest seizure to date. A seizure which forced us to pull off the road on our way home from our weekly family nature hike. A seizure which stole him away from us for four impossibly long minutes. A seizure which terrorized our hearts as we helplessly watched the drool pouring from his mouth while his body was under siege. A seizure that left us shaken the rest of the day. A seizure that forces us to face the unthinkable; complete the hemispherectomy. My heart is just so fragile and worn. I look over my shoulder and wonder how we found the courage to make that decision all those years ago. But then I remember it was much more hopeful then. My heart was much less sorro...

Shortly after a large seizure event his sister snapped a picture of him, postictal and recovering, snuggled in bed with his dad and I. 

Some days it's incredibly hard not to feel hopeless.  Each morning we let him hang in bed for awhile, usually with his iPad, while we get our coffee and maybe peek at the news. If we have the stomach for it. Since his relapse, mornings and naps the the only times of day he doesn't have one of us with him. Even those two precious hours are difficult for us to relax. Epilepsy doesn't punch out for a lunch break.  This morning is an example of why.  We were getting around for church while he stayed in bed with his iPad. He came downstairs looking seizure-y and expressing how tired he was. He's always tired lately. He headed straight to the shower, which is not all that unusual. That was when we discovered that he wet himself. Not a little dribble, but like his bladder released.  Of course, we don't know for sure because we dared to grab a cup of coffee while he stayed in bed, but we can make an educated assumption that he had a seizure. It must...

Around 7:30 this morning Trevor had one of his scary seizures. His big brother was giving him a shower. Trevor had just stepped out when I heard the call. I sensed immediately by Toby's tone that it was a big one and he was scared. The trouble with the big seizures is that Trevor is completely non-responsive and , at times, combative. I wrapped my arms around his dripping, little body and held the Frankincense to his nose. His lips weren't blue, but he didn't appear to be breathing. He was frozen. Eyes wide, blank orbs. Mouth agape. Drool beginning to pool on his lower lip. He was a statue. When he's completely gone like this it seems to take longer for the Frankincense to work. I've wondered if perhaps it's because he's not actively smelling. I hope that's the case and not that the benefit we were seeing was a honeymoon period. Suddenly he was pushing my arms away. Still not responding, but at least moving again. Thankful that he's still small of...