2.22.2018

grace and grief



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 that night, he told his sister how the big seizures make him feel so weird and tired and like he just can't do anything, not even lift his head off the pillow. It was his first post-ictal sleep and his first clear articulation of how these make him feel. Sometimes it feels like all the moments are woven with both grace and grief. 




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