happy being trevy

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...

The following poem was written by Trevy's big brother who has lived all the hard and hopeful moments beside us. This year has been especially hard. He says his inspiration is knowing our hearts are broken but watching us continue to push forward which has shown him what true love looks like.    Ones Who Cry in Tears of Iron  If the extent of love were passing smiles Nothing would there be to gain. This love tells me of a different tale, One covered in darkness and pain.  Transcending far deeper than smiling words  Could ever care to truly explain.  In times of joy and times of peace,  The bond we share is plain.  Yet I know it's those times of hurt Showing love has no refrain.  For ones who cry in tears of iron, Only they, know my true name.  -- Toby Foltz 

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. 

I'm always looking for ways to infuse meaningful therapy at home. Yoga is both wonderfully calming as well as core strengthening, which we ALL need more of. I love Sing Song Yoga because it combines the yoga positions with musical instructions. It's extremely well done and available via dvd or iPad app. I prefer the iPad, although I really need to figure out how to mirror to the TV.   

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 don't wax politically philosophical often but today I read yet another conservative leaning piece justifying the ever increasing profit margins of the pharmaceutical industry, citing the favorite argument. Namely, without the monetary incentive the greatest minds would look elsewhere to spend their time and energy which would in turn only harm the sickest among us. The incentives are needed to develop new life-saving treatments. It's really compassion, see?  As I processed the article, the following thoughts began to crystallize in my heart. Historically, some of the greatest minds were drawn towards medicine not because of its monetary value, but its virtuous. It was Hippocrates, the Father of Medicine, who encouraged his students to treat all peoples the same, making no distinction between friend and foe, rich and poor. "Sometimes give your services for nothing," he advocated. Perhaps this shift away from wanting to do good for personal growth towards...