Years ago I lost my religion. Had I not then, however, there's little doubt I'd have lost it raising a disabled child with a chronic condition as heinous as epilepsy—just one of the many things in life, besides starving children and war and genocide and massacres in churches, that proves to me there is no merciful God in the heavens.
At three-fifty this morning, Calvin suffered another grand mal, bringing his two-week total—not including complex partial seizures—to five after having enjoyed nearly an entire month having had only two. Michael is on his way home from Boston today, so I had to go it alone.
Before the seizure, I got up more than a handful of times to lay Calvin back down in his bed and give him some of my homemade THCA tincture aiming to thwart a somewhat-anticipated seizure. I awoke later to the blood-curdling shriek that usually announces the ordeal. I made sure his head, hands and feet weren't smacking the bed. I yanked off his socks and rubbed frankincense on the soles of his feet. When it was over, I gave him some THC. Then I gave him his benzodiazepine early. I chased them both with syringes of water. I changed a soaking diaper. I got in next to him. He fell asleep. He woke minutes later having wet himself and his bed. I changed him again. Every few minutes he kept sitting up, banging the bed, working his fingers in a frenzy in front of his face, his heart beating furiously in his chest.
He's sitting in front of me now and I hardly recognize him, the way he juts his jaw, purses his lips and clenches his teeth creating a phantom dimple on the side of his cheek that I only see in the hours before a seizure. He's fingering like mad. I feel bad for him and yet irritated and slightly repulsed.
I wonder how I can keep this up. Keep following him around the house. Keep running for him and lunging to prevent him from a fall whenever he gets into a stand. Keep thwarting his eye-poking and sun-staring and shirt-biting and head-banging. Keep changing his diapers and hearing his shrieks and chopping his food and wiping his drool and mopping his juice and laying him down and picking him up and holding his hand and giving him supps and watching him seize and never getting enough sleep, never able to finish any endeavor.
I wrote to Michael this morning telling him what happened. I told him I was feeling defeated. No doubt he feels helpless. All I want to do is go back to sleep.
|Photo by Michael Kolster