My husband Michael has been away from home for three-and-a-half weeks. He’s on his way home this very minute after having shot 200 glass plates of the Savannah river. During his absence, despite a couple of rough nights, a few days without nursing help, and a sick kid on my hands, it has been fairly smooth sailing thanks to my father-in-law and a handful of friends who brought me bourbon and cheese, picked up groceries, walked Rudy, made me dinner, brought over cupcakes and homemade granola and Thai food, mixed me cocktails, called on me and slept over when Calvin was sick. Of course, things would have been a little bit easier if Rudy hadn’t pooped in the house nearly every day, if he hadn't eaten cat shit, hadn't wandered off, crossed a busy street and ended up at the Deli. Ugh.
I suppose it could have been easier, too, if it hadn’t snowed several times (again this morning), if it had inched above freezing for more than a smattering of days and, on the few days it did, if the windchill factor hadn’t made it feel like the teens. It would have been nice if the snow had melted weeks ago. Instead, I’m still looking out on a back yard covered in white and a front yard dressed in salty, gritty, filthy slush from the beaches of sand and salt the plows have been spraying on the roads and into our yard for months. Underneath the snow everything is brown. The leaves on the trees won't be appearing until mid May. Needless to say, I've got a major case of spring fever—me and everyone else in Maine.
Today is day nine. Calvin, though he’s been sick these past few days, has been in a decent mood during Michael’s stint away, which makes taking care of him a bazillion times easier. Since starting Calvin on cannabis oil, he has slept better and been ever-so-slightly calmer. At times his balance is pretty good—for him. Once or twice I've caught him making a couple of new sounds, which only the well-trained ear would notice. He has mostly stopped dropping to the ground in stubborn fits and isn’t so insistent on taking baths at all times of the day. It's still too early, however, to tell if the cannabis oil—a high THCA one, not a high CBD one—is helping to reduce his number of seizures. My gut tells me that it is, and thankfully, since he is still on a pretty small dose, there is room to move.
Sometime this week we’ll be getting the results of his antiepileptic drug blood levels. I’m anxious to see if they have changed since increasing his cannabis oil. I’ll be damn surprised if they haven’t since he’s been holding his head in his hands a lot as if he’s got a constant headache.
These drugs. They make me sick. I often wonder what would have happened had we never given him any when he began having seizures. No one had offered that as an option and, as two shell-shocked parents, we didn't know enough to ask if it was. What if we’d known about cannabis then? What nascent skills—like saying Mama once, eating with a spoon and walking without a harness—might he have perfected in the absence of a series of mind-numbing, mind-altering drugs? What kind of boy might he be? How has his behavior changed because of the thousands of milligrams of benzodiazepines that have soaked his developing brain? What kind of memory might he have had and what might he have learned as a result?
I'll never know the answers to these nagging questions—questions that come to me in the middle of the night and are nearly as vexing as my dreams of Calvin having seizures. So, I'll try to keep my mind on the positive, on the fact that the days are gradually warming, the snow will soon be gone, Michael is coming home, my spring fever will soon break and not long after we'll be barbecuing and Calvin will be able to walk in the yard again and maybe we'll be able to reduce some of his drugs and see fewer seizures and have more happy days, restful nights and simple, beautiful peace of mind.
I suppose it could have been easier, too, if it hadn’t snowed several times (again this morning), if it had inched above freezing for more than a smattering of days and, on the few days it did, if the windchill factor hadn’t made it feel like the teens. It would have been nice if the snow had melted weeks ago. Instead, I’m still looking out on a back yard covered in white and a front yard dressed in salty, gritty, filthy slush from the beaches of sand and salt the plows have been spraying on the roads and into our yard for months. Underneath the snow everything is brown. The leaves on the trees won't be appearing until mid May. Needless to say, I've got a major case of spring fever—me and everyone else in Maine.
Today is day nine. Calvin, though he’s been sick these past few days, has been in a decent mood during Michael’s stint away, which makes taking care of him a bazillion times easier. Since starting Calvin on cannabis oil, he has slept better and been ever-so-slightly calmer. At times his balance is pretty good—for him. Once or twice I've caught him making a couple of new sounds, which only the well-trained ear would notice. He has mostly stopped dropping to the ground in stubborn fits and isn’t so insistent on taking baths at all times of the day. It's still too early, however, to tell if the cannabis oil—a high THCA one, not a high CBD one—is helping to reduce his number of seizures. My gut tells me that it is, and thankfully, since he is still on a pretty small dose, there is room to move.
Sometime this week we’ll be getting the results of his antiepileptic drug blood levels. I’m anxious to see if they have changed since increasing his cannabis oil. I’ll be damn surprised if they haven’t since he’s been holding his head in his hands a lot as if he’s got a constant headache.
These drugs. They make me sick. I often wonder what would have happened had we never given him any when he began having seizures. No one had offered that as an option and, as two shell-shocked parents, we didn't know enough to ask if it was. What if we’d known about cannabis then? What nascent skills—like saying Mama once, eating with a spoon and walking without a harness—might he have perfected in the absence of a series of mind-numbing, mind-altering drugs? What kind of boy might he be? How has his behavior changed because of the thousands of milligrams of benzodiazepines that have soaked his developing brain? What kind of memory might he have had and what might he have learned as a result?
I'll never know the answers to these nagging questions—questions that come to me in the middle of the night and are nearly as vexing as my dreams of Calvin having seizures. So, I'll try to keep my mind on the positive, on the fact that the days are gradually warming, the snow will soon be gone, Michael is coming home, my spring fever will soon break and not long after we'll be barbecuing and Calvin will be able to walk in the yard again and maybe we'll be able to reduce some of his drugs and see fewer seizures and have more happy days, restful nights and simple, beautiful peace of mind.
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| Calvin and his nurse, July 2013 |
When you're facing severe or chronic illness, you can't second-guess your choices. You do the best you can with the information you have available, and you don't look back. Anything else is pure torture.
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