plan of action

After three consecutive nights of getting up almost hourly to settle and reposition my son in his bed, and after a day of hearing him whine, the seizure finally took hold. Michael was sleeping with Calvin when it happened in the early hours of the morning, which is when most of them are happening now. I ran downstairs to grab the vial of my homemade THCa cannabis oil in the fridge, came back up and squeezed twenty drops into Calvin’s mouth, just at his gum line, hoping to prevent a second seizure. Then I crawled in next to him and waited for his aftershocks to pass.

Lying next to him and feeling his shallow breathing and his shivers and jerks, knowing their neurological origin, is terribly unsettling. But this time they led me to a better understanding of what steps I must take to try to deliver him from his suffering. My plan of action is to finally begin giving him drops of a high CBD (cannabidiol) oil at bedtime. I’ve decided to simply swap a few drops of THCa oil for the CBD oil so as to avoid layers of additional treatments. I came to this conclusion after months of thought, discussions with Michael and with the recent input from my nephew, Max, who seems to have a budding analytical mind, too. I have been advised by some against doing this, against changing more than one thing at a time, but in my mind and in this case it makes the most sense. While experimenting with the CBD, however, I will likely suspend the benzodiazepine wean, at least until I can get a sense of whether the CBD is helping or not.

The only factor that remains uncertain is where I will be getting the CBD oil. I have several options: I can make it myself; I can get it made by a local caregiver-grower; I can wait for Charlotte’s Web to become available this fall, perhaps as early October; I can order it from Synergy in California, or; I can try to connect with The Cannabis Man who I have not heard from in three months, which saddens me to think that was maybe just a pipe dream.

No matter which path I decide to take, however, I am forever hopeful. Calvin's benzodiazepine wean, now at roughly 50% his highest dose, has given our boy a better quality of life, more stamina, less irritability and increased focus. I look forward to giving him his last dose, whenever that might be.

After I crawled in next to Calvin, whose rolling shudders caused me to feel deeply despondent, I whispered for Nellie. She quickly came to Calvin’s bedside where I was able to reach out and pat her on the head. In the dark she licked my hand. This, and the knowledge that I have what seems like a reasonably sound plan in place for my boy, helped me to fall asleep with the hope that things will get better.

Calvin did not have a second seizure. At least, not yet.

photo by Michael Kolster


  1. I, too, am hopeful and believe that you're absolutely doing the right thing! And I think that I need to talk to you about THCa oil and perhaps adding it to Sophie's regime. We had some of it a while back, and I didn't see much impact, but I wonder if it had turned given that we didn't keep it in the fridge. Let's talk this week, maybe?