On Sunday, Calvin was having such a good day, but by naptime it became clear it was too good to be true. Michael put him down and brought me the baby monitor. Tied to a thin warn ribbon, I slung it around the crown of my head, dangling just beside my ear so I can hear subtle changes in Calvin’s breathing and movement.
I am always on alert during the first twenty minutes of Calvin's nap, and if I suspect an ensuing seizure I sit upstairs with him until I know he’s out of the woods. He was doing so well I stayed downstairs to make us some lunch. But ten minutes after Calvin went to sleep I heard him move ever so slightly—that’s all I needed to know that something was amiss. I scaled the stairs by twos and pulled the duvet from his face. He turned to look up in a disoriented semi-conscious daze, his patchy red cheeks and blue lips giving it away—another frigging seizure. And this one just three days after increasing one of his antiepileptic drugs and having increased his other medicine several times since January. More seizures. More drugs. More seizures. More drugs. It sickens me.
Every seizure crashes into my heart and bores a gaping black hole nothing can fill. Outside, what began as a glorious day, the sunshine glinting off of nightfall’s raindrops, became bleak and oppressive, dark clouds hanging heavy in the sky, bright colors subdued in a cloak of utter drabness. The chilling wind quivered leaves so much like Calvin’s tremors. I wonder if things will brighten, lighten. Will there ever be an end to all of this miserable sunless heartache?
But then I looked out the window, thinking it had begun to rain seeing sprinkles in the street puddle, but it was a blue jay bathing, dipping its head and flapping its wings gloriously in the cool water. Its mate appeared and I could see them perched high in our tree, silhouetted against a brilliant white sky. And as I leaned forward to see the pair, the sharp crimson of a cardinal peeked from the shadow of green rhododendron leaves. The day had brightened, though only a little.
Today, Monday, he had a bizarre day. I suspected another naptime seizure. It didn't come. It decided to come ten minutes after he went to sleep for the night, which almost never happens. It kills me.
The clouds are back, the sun is down and it's raining ... again.
Please, please share Calvin's story. We desperately need a cure for epilepsy.
I am always on alert during the first twenty minutes of Calvin's nap, and if I suspect an ensuing seizure I sit upstairs with him until I know he’s out of the woods. He was doing so well I stayed downstairs to make us some lunch. But ten minutes after Calvin went to sleep I heard him move ever so slightly—that’s all I needed to know that something was amiss. I scaled the stairs by twos and pulled the duvet from his face. He turned to look up in a disoriented semi-conscious daze, his patchy red cheeks and blue lips giving it away—another frigging seizure. And this one just three days after increasing one of his antiepileptic drugs and having increased his other medicine several times since January. More seizures. More drugs. More seizures. More drugs. It sickens me.
Every seizure crashes into my heart and bores a gaping black hole nothing can fill. Outside, what began as a glorious day, the sunshine glinting off of nightfall’s raindrops, became bleak and oppressive, dark clouds hanging heavy in the sky, bright colors subdued in a cloak of utter drabness. The chilling wind quivered leaves so much like Calvin’s tremors. I wonder if things will brighten, lighten. Will there ever be an end to all of this miserable sunless heartache?
But then I looked out the window, thinking it had begun to rain seeing sprinkles in the street puddle, but it was a blue jay bathing, dipping its head and flapping its wings gloriously in the cool water. Its mate appeared and I could see them perched high in our tree, silhouetted against a brilliant white sky. And as I leaned forward to see the pair, the sharp crimson of a cardinal peeked from the shadow of green rhododendron leaves. The day had brightened, though only a little.
Today, Monday, he had a bizarre day. I suspected another naptime seizure. It didn't come. It decided to come ten minutes after he went to sleep for the night, which almost never happens. It kills me.
The clouds are back, the sun is down and it's raining ... again.
Please, please share Calvin's story. We desperately need a cure for epilepsy.
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| photo by Michael Kolster |
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