I like to share the heart warming anecdotes from our life with Trevy. It helps me remember that not every moment is heavy and heart wrenching. Particularly when we smash into the angst times.
Like now.
After his larger (most likely) complex partial Friday night my whole body (centralized in my heart) has been coiled tense.
Epilepsy is a thief, stealing away bits of him (of us) all the time. Development. Health. Peace. Breath... Because it's impossible to breathe normally when his life is unstable.
Which is precisely how it feels right now.
Unstable.
Combustible.
Treacherous.
Volatile.
I witnessed two very quick myos over the weekend. Hardly worth noticing, really. Except that...well...they're seizures. And every seizure is a serious seizure. Even the innocent appearing.
Actually, it's a soapbox of mine. The attempt to down play one seizure type over another. It's not a competition.
Let's just settle this right now. There is NO such thing as a good seizure. There is NO such thing as a harmless seizure.
That said, I'm thankful that I've only seen very quick, isolated myos.
However, his mood has continued to become increasingly destabilized. He spent the entire morning in crying non-compliance. Telling me he was NOT going to school. Adamant that he just wants to sleep. Real tears running down his cheeks. Evidence that what is going on is more than just frustration over being told no when asking for a Yoo-hoo.
Something is not right.
But what?!
What?!
That's what I need to know. That's what keeps me awake nights. And weighs me down with a tangible heaviness of dread. I feel it pressing against my soul. The not knowing is what has prevented me from reaching out to his neuro before now. His mood has been flagging for weeks. I've been doing my homework. Eliminating all the "normal" triggers. Sickness. Fatigue. Diet. Until the only choice that remains is neurological. Be it seizure activity or simply poor neurological health. I don't know. I just don't know. And frankly, the answers are elusive more often than not.
I love this boy fiercely.
I just want him to be happy and healthy. The two are so closely woven that when one is disturbed, undoubtedly the other is as well.
Like now.
After his larger (most likely) complex partial Friday night my whole body (centralized in my heart) has been coiled tense.
Epilepsy is a thief, stealing away bits of him (of us) all the time. Development. Health. Peace. Breath... Because it's impossible to breathe normally when his life is unstable.
Which is precisely how it feels right now.
Unstable.
Combustible.
Treacherous.
Volatile.
I witnessed two very quick myos over the weekend. Hardly worth noticing, really. Except that...well...they're seizures. And every seizure is a serious seizure. Even the innocent appearing.
Actually, it's a soapbox of mine. The attempt to down play one seizure type over another. It's not a competition.
Let's just settle this right now. There is NO such thing as a good seizure. There is NO such thing as a harmless seizure.
That said, I'm thankful that I've only seen very quick, isolated myos.
However, his mood has continued to become increasingly destabilized. He spent the entire morning in crying non-compliance. Telling me he was NOT going to school. Adamant that he just wants to sleep. Real tears running down his cheeks. Evidence that what is going on is more than just frustration over being told no when asking for a Yoo-hoo.
Something is not right.
But what?!
What?!
That's what I need to know. That's what keeps me awake nights. And weighs me down with a tangible heaviness of dread. I feel it pressing against my soul. The not knowing is what has prevented me from reaching out to his neuro before now. His mood has been flagging for weeks. I've been doing my homework. Eliminating all the "normal" triggers. Sickness. Fatigue. Diet. Until the only choice that remains is neurological. Be it seizure activity or simply poor neurological health. I don't know. I just don't know. And frankly, the answers are elusive more often than not.
I love this boy fiercely.
I just want him to be happy and healthy. The two are so closely woven that when one is disturbed, undoubtedly the other is as well.
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