happy being trevy

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...

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...

Contrary to how it might appear, he found her weight quite comforting. "Amazing!" in his own words, actually. I'm here thinking who needs to spend money on a weighted blanket when you have a big sister? 

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...

He's been super competitive lately. Which is cute.  Even still, I'm not sure how I feel about the sassy nature of his words towards his sister this morning...  Let's have a competition. See whose bird best!  I know I'm mom, but I adore her drawing style.  She declined, having inherited her mother's competition averse nature. It didn't stop him from later assessing both of their entries and declaring his the winner.  His drawing includes an Eastern Bluebird, a nest, and mistletoe berries. I do wholeheartedly agree with him that his bird is "sooooo cute" but his sister's is equally adorable.  Nature journaling never fails to provide me with an *I heart homeschooling* moment.  For the curious, once a week-ish we'll read from Birds Every Child Should Know while they add a sketch into their nature journal. We also use the Audubon iPad app to learn more about the bird, listen to their ...

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...

By 10 am yesterday morning Trevor had so many seizures that I stopped tracking them for my own mental health. He has been a little more whiny and anxious than normal, but his neurologist just increased his Trileptal and he's extremely sensitive to changes of any kind. Also, he's averaging 5 seizures a day right now. Crankiness is a common side effect of seizures. He had no fever. He made no complaints. He's been eating and sleeping as normal. Just slightly more whiny and anxious. Increased seizures can be a symptom, but they are also often unexplained. So, we blame the moon, fatigue, changes in routine. Every mom of a child like Trevor knows what it's like to analyze every minutia of their lives in hopes of helping them and caring for them.  In retrospect, I'm kicking myself for not reading the clues. In an effort to increase his level of independence, I let him brush his teeth by himself in the mornings. Each night I lay him over my legs an...

I've been feeling very defeated by epilepsy lately.  In addition to his daily 4-5 seizures, Trevor has had two of his larger events in the past two weeks. One of them resulted in calling rescue. Thankfully, the seizure broke before they arrived and we could decline a ride to the hospital. Even still. There are no words in our language to describe the groanings of our hearts during his big seizures and the aftermath is so very difficult to navigate emotionally.  I spent the weekend fighting off the frost of heart-numbness by revamping our school system. He's been so fatigued that focusing on specific subjects daily just isn't working. I've heard of and used loop schedules before but have never tried to loop everything . I decided that's what we needed to do. Just keep a looping list of every.single.thing and work through whatever we can each day. I needed to take the pressure off of both of us, while still pushing forward.  the loop list represe...

Trevor noticed my wet cheeks as I was scrolling through my FB memories this morning. Amongst others there were reminders that 8 years ago today he was in for phase one of his radical brain surgery . I'm not sure how I found the energy to post so frequently though I do remember it being a life-line while we were waiting. Though we were alone, just Jonathan and myself in the waiting room, I knew friends and family were with us in spirit and virtually. Reading those posts was hitting my heart particularly hard this year. Probably because we're dealing with an epilepsy relapse. Trevor noticed and asked why I was crying. I believe in honest answers to honest questions and so I told him that I was thinking about his brain surgery when he was a baby. He asked why his surgery made me sad. I tried to explain that I wasn't all sad, really, but I was remembering how nervous I was during his surgery. Of course he then wanted to know why I was so nervous. ...

Today has been one of those sweet, validating homeschool days. The weather is heavenly. The kids are getting along, or at least were at the time of this post. Studies have been flowing smoothly. Including Trevor doing a terrific job reading a new book! I can't helping thinking "I taught him that!" as I noticed his improved fluency. He adores the Billy and Blaze series, which is helpful. Pretzels, however, are distracting.  We were having such a lovely day that I couldn't resist catching another video, this time of our fine motor rock stacking workbox. I try to think of tasks that are practical and meaningful. Rock stacking is a thing in our neck of the woods. My hope is that working on this at home will allow him to participate with friends in a meaningful activity when we're out and about. He loves this task and was doing great. Until about the 7 second timecode, at which point you can hear him intake his breath, see him pause from his task, h...

While I do share insights into the heavier side of loving and living beside a child with catastrophic epilepsy, I don't often ask for prayer specifically. Over the years I've come to believe that those who need our prayers will come to mind, if we'll only allow our hearts to listen. I know that our family comes to many a' mind and we are covered in prayer frequently.  But this week Trevor had his largest seizure to date and to be frank, it was terrifying and paralyzing. While we didn't have to administer rescue meds, as I prepped them I was thinking, "This is it. This is the one. Oh God..."  My knees shook for a long time after it was over. It was ironic that I had to ask Trevor to give US time to recover after he came back to us. The seizure struck while we were in the middle of a folksong. He loves music and wanted to keep singing, meanwhile his brother and I were still reeling. The Diastat was still hanging in my outstretched hand. Still, h...

Trevor was having a particularly rough morning. He'd logged two seizures already and was hyper focusing on how to get money to buy new Wii games. It was making him miserable and I had him lay down on the couch until he was ready to move on to lessons. He usually helps me with laundry as part of his daily routine, but he was in no position to be helpful this morning. Toby was needing a mental break from his studies and offered to sit with his brother while I ran to the basement to finish the load I was working on.  When I came back upstairs I found Tobin holding Trevor in his arms telling him how much he loves him. It wasn't just words. Evident from his tone of voice and his body language was the passion flowing form him. As if he were trying to make sure Trevor never forgets his words. As if he were trying to sink those words down into his brother's marrow. It was incredibly, movingly sweet.  This has been a year of soul growth for Tobin. The borders ...

I wish for every mother (or father) who finds herself sitting through countless, often discouraging, therapy hours beside her disabled child to have at least one therapist whose face lights up with joy when he/she sees that child. I wish for her heart to hear another person's voice exclaiming that her child is amazing and to have that voice dripping with acknowledgement of how far he's come and how amazingly brave and special he is.  We have been blessed with a handful of therapists over the years that cared for Trevor deeply. Some still keep in touch. Those blessed few have been such a gift.  This morning, Trevor's outpatient OT came to pull my nose out of my Kindle so I could "come see how amazing he is!" Her face was glowing; her countenance speaking to my soul that she knows how hard he fights for every gain.  She'd asked him to build a crash stack out of large foam blocks. Her idea was to have him scooter zoom into the stack and knock i...