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.

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...

Trevor has the sweetest, most insightful conversations while on the swing. I'm convinced all of his speech work should be done while swinging! When the sun is shining, he loves to head outside first thing in the morning. It's peaceful swinging and listening to the world wake. He craves feeling peaceful. We have a variety of songbirds in our neighborhood and their cheerful voices never fail to gladden our hearts.  This morning Trevor shared, his words far more adorable than my reinterpretation, that it's confusing to him how he's "a kid with words" but in the mornings he forgets them all until about 10 o'clock, at which time they return to him. He went on to express confusion about being able to remember some words, but not all. He shared that it's frustrating, though his grin and dismissive laugh revealed that he's handing his frustration really well. After pondering for a minute I thought to ask him if he knows the words he want...

Standardized testing is hard... Swinging between sections helps! I've decided to administer the California Achievement Test with Trevor this year to give me a good snapshot of his skills. Though he's entering 5th grade, I've opted to use the 2nd grade testing. It's a good representation of his abilities and I'm a big believer in setting him up for success. We're using the online version and I'm providing support by operating the computer and reading as needed. He's really required minimal support and could probably do the computer himself as well, but being an entirely new format for him I've decided it's best for me to manage. He was tired, but in an excellent mood! I think he actually kinda likes doing the testing with mom. It's something different and he's feeling proud of himself because he knows he's answering a lot of the questions correctly. Especially in the math section. He even blew me away with some...

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...

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...

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 ...

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...

Most of the seizures Trevor has had throughout his life have been quick, jerky movements. In seizure-ville, these are known as Myoclonic Seizures . I've seen hundreds of thousands of these seizures since he was 7 months old. I hate to say that I've grown comfortable with them. Because I'm not comfortable with seizures.  period . But I know these nasty little beasts. They are predictable for me. I know when to worry and when to just give him cuddles. He has yet a new seizure type emerging, though. And it’s totally throwing me for a loop. I hate them. They are so much more visually disturbing. His right arm raises up. Not straight, though. It’s crooked. Shaped like a half moon. And sometimes it will rest on his head involuntarily. Almost like he's patting himself. His head turns slightly to the right and his eyes are…just weird. Everything slows down. His movement, his speech. To me, it feels like I'm watching a robot "power down". His body kind of ...