happy being trevy

The day after Christmas. Resting on the couch, first thing this morning, with his new Baltimore Oriole's binky and Adventure Toad stuffy. I don't know why I feel so bad this morning?   It's because you had a big seizure, Buddy.    Oh .  He rolls over and closes his eyes as the aftermath of the event continues to wash over him. It's astonishing how a 3 minute seizure can steal hours from his day as he recovers.   Sigh.   Life with refractory epilepsy is heavy. So very heavy. People love to credit God with perceived miraculous outcomes and our misguided ideas of good. Trevor teaches me daily that God is good in the heavy too. I don't mean to sound preachy first thing in the morning, but every seizure drives this idea home more deeply.   So, please, carry on praying for a miracle for us, but know that it could be the miracle He's working isn't in Trevor's body but in our hearts. ...

Our current artist focus is Rembrant. For six weeks we will study a different piece by the same artist. The idea of focusing on one artist for a period of time is in the hopes that we develop a friendship with the person and his/her work. I have grand images of my children strolling art museums with their children and immediately recognizing the style of an artist we've studied even had they never observed that particular piece. It's very tempting to rapid-fire everything beautiful at our children. There is so much we don't want them to miss and we're reminded so often that our time with them is short. Having one on the cusp of manhood, I agree. Our time together is fleeting, indeed. But I have stumblingly learned that walking slowly grows a much more meaningful connection in their hearts, be it with an artist, an author, or even mathematics. I am frequently forced to reexamine my motives as I find myself slipping back into bad habits again. Do I want them to sim...

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 was composing a cute anecdote about our drawing lesson today. I purchased Mona Brooke's Drawing With Children over the summer and just implemented our first lesson today. He LOVED it. He made me laugh when, at one point, he turned to me and said "I'm not Bob Ross". It was post worthy.  I was almost done with my thread when the seizure struck. It wasn't obvious at first that it was going to be a big one. Then he started drooling. Profusely. And moving in bizarre, robotic, clearly neurological ways. When his body wasn't moving up and down, side to side, or twisting around, it was shaking violently. The front of his shirt was soaked through as the drool just kept running.  After his last large seizure we've started accessorizing with a stopwatch in lieu of a necklace. When I realized this wasn't going to self resolve quickly, I pressed the start button. At the minute mark I called for Toby.  I didn't say why, but I didn...

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. ...