happy being trevy

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...

I'm about halfway through this seminar and it has me all "I LOVE homeschoolers!" How awesome is it that we can access "in service" podcasts designed to educate and grow home educators for free from the comfort of our home?!  Rita Cevasco is a Speech and Language Pathologist.  I'm a bit obsessed with people who are passionate about speech and language development.  I wouldn't know why, though?  In this podcast Rita discusses the role copywork plays in the language growth process. It's validating and beautiful so far. Which reminds me, you know who was a huge advocate of copywork? Only my favorite educational philosopher, Miss. Charlotte Mason . I am often staggered by how far beyond her time she was. I appreciate that she had a keen interest in brain science. I do too. Refer to above image for my inspiration. I am persuaded that Charlotte was before her time because she believed deeply in the power of personal observatio...

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...