full moon rising

lu·na·cy
ˈlo͞onəsē/
noun
the state of being a lunatic; insanity (not in technical use).
origin
mid 16th century (originally referring to insanity of an intermittent kind attributed to changes of the moon).

Twice yesterday, the full moon rising, my boy briefly choked on bits of food. Once, he let out an odd shriek that I barely recognized as being his. He had one warm red ear, two warm hands, one space-out, and at times was rubbing his head madly and covering his ears. At one point he became intense as hell, or what I sometimes call bat shit crazy. These are just some of the omens I see on the brink of his seizures.

I wrote in his journal that morning, not himself, though I’ve really no idea who my son is completely because of the heavy veil of drugs and seizures that have plagued him the past ten years, and because of the difficult benzodiazepine wean no child should ever have to endure, much less the drug itself, except perhaps in the most dire cases.

Mid afternoon, Michael and I had a bit of a reprieve and were able to—for the second time ever—sit in a nice restaurant, drink beers and graze from a pile of fancy fries while Calvin sat between us banging the table and eating his diced up lunch. As we sat overlooking the river, we marveled at how far Calvin has come, being able to walk with us—on good days—as far as the fields and back, to grocery shop with us and to perch in a regular dining chair, safely and somewhat patiently, so that we can almost relax.

Yesterday morning, I'd reduced Calvin's benzodiazepine by 0.05 milliliters, which in a three milliliter syringe is equal to about one drop or 0.125 milligrams (he gets two doses a day). We've learned the hard way that it is better to be safe than sorry when weaning benzodiazepines, so we've slowed the wean down to such a rate that Calvin won't be off the last four milligrams until probably next February, though we've been weaning it for nearly two years already. But if we go any faster, Calvin suffers; he endures more seizures and these frightening episodes of pain that, because he can't communicate, we've no way of determining what hurts. He just cries and writhes and looks at us as if imploring us to make it stop. His cries have the excruciating quality of a baby's, and are gut-wrenching to endure, knowing not how we can help.

Back at home after lunch, the chokes and shrieks and space-outs put me on edge sensing a seizure taking shape, even though it was only day three since the last one. We went to bed early again, bone-tired and sleep-weary from the long winter "vacation" week.

At three-thirty a.m., the full moon lingering low in the sky, Calvin awoke disturbed, a bundle of nerves, and never went back to sleep. Still leery of an impending seizure, I gave him a little extra Keppra and, later, pushed his benzodiazepine an hour or so early hoping for the best. Despite my strategies, at dawn and shortly thereafter, a few brief partial seizures eked out between Calvin’s fits of utter lunacy. He became so manic I imagined the very worst, not just from him, but also from my sleep-deprived, persistently stressed, frazzled, haggard, deranged self. Good thing he’s cute, I repeated, then took another desperate gulp of caffeine with milk.

Between Calvin's seizures, I read from another mother, a dear friend, that she’d had a similar night and that she’d also held vigil beside her child, waiting on edge for the inevitable seizures that seem to come so often under the tug of a full moon. She mused on the image of we caregivers retreating to an underground bar to commune and drink whiskey and tell dark jokes. I'd love to join her there now. It's five o'clock somewhere, and the full moon puts me in the perfect mood.

Calvin at ten months