How We Do It, Part LV

I drove up Venice Boulevard today, back from a doctor's appointment on the west side, no traffic, blue skies, hot dry sun, the silk floss trees dropping their pink petals. This is what I thought. Sophie had a huge seizure this morning, a big one, related, I'm certain, to the fact that we've cut her drug in half. I rubbed some THC on her gums during the seizure, and she recovered fairly quickly. I don't know what's what, but what I do know is that I've lost all trust, or maybe not all but most trust. You must have figured that out all ready.  Trust in what if not what's what? I don't remember exactly when I became unmoored -- was it when that doctor from New York City told me that I'd had a good idea when I suggested that the three drugs my baby was on were perhaps interacting with one another? Was it that moment when he hmmmmed on the phone and I realized the gig was up? Is it because I'm a woman, formerly a girl who was taught to please, to defer to authority, to pipe down, shut your mouth, too opinionated, your head in the clouds?Just the other day, I was told, Who told you that you're special? What makes you think that? with all the implication that I'm not, which I know, at last, to the questioner. But this -- this trust -- lost -- the sense of trust lost, the yearning to hand it all over (not let go, let god), the impossible decision-making, the plunges, the leaps. The silk floss tree blossoms are like windmills on Venice Blvd, spinning and falling. The trunks are spiked, so sharp that we shaved them from the tree in the backyard when the children were young.  My windshield -- wind shield -- covered with flowers that fall, whole. She seemed confused today, her brow furrowed, her eyes too often swiveled to the right, a jitter, a blip. I imagine taking Sophie under my arm and running, running to China, away. She's still that baby, under my arm, so many trips to China. Don't get me wrong. I'm not going anywhere but there in my head. These seizures, those, this loss, that baby, trust gone -- they are compressed in time, over and over, just mused over on Venice Boulevard while I drive.

Cannabis Oil Question, #6

What do you do about Sophie's medicine at school and do you tell her school what she's taking?

You'll know later why I posted this daffy photo of myself that I took on hour five or so the other day that I spent in the Los Angeles airport, waiting for the Chicago airport to open. I loved those glasses, but they cost $65 which is ridiculous, even if they were vintage and everything's coming up -- oops, I don't want to give it away.

Here's what I do about Sophie's medicine at school. I don't give it to her at school but wait for her to come home to give her second dose. The first dose comes at 7:00 or 8:00 in the morning, about an hour or so before breakfast and before her other meds. The second dose comes about 3:00 or 4:00 in the afternoon, and the third comes at 10:00 at night when she's already asleep. That last dose is the most tricky, but so far we've been able to manage getting it in her mouth followed by a sip or two from her sippee cup and some gentle stroking of her cheeks to provoke the swallow reflex. She rarely wakes up.

Here's what I tell her school about the cannabis: nothing. I have told her teacher and aide, quite privately, that we're using it, but I haven't told the nurse or the principal or the vice-principal or the special education director or Oz Downtown because it's none of their business. You might raise your eyebrows at this, especially if you live in California and know about earthquake plans and emergency medicine supplies. I realized today that several months of the school year have gone by, and I haven't renewed Sophie's earthquake emergency medications in the school nursing office. To tell you the truth, I might have let the entire school year go by last year and not taken care of that either. That is wrong, I admit, and irresponsible. If there were an earthquake, and we were not able to get Sophie, she would be in deep shit without the regular administration of the two antiepileptic drugs that she takes, even though neither controls her seizures. Why is this? Because stopping these AEDS abruptly is very, very dangerous. Out here in earthquake territory, we are supposed to have water reserves for three days at a minimum and up to ten days. "They" recommend a week's supply of medication as well.

What does this have to do with cannabis? you ask. Here's the thing. I'm not worried about leaving cannabis with Sophie's school because going without the cannabis for a few days is unlikely to kill her. Yes, she might start having bazillions of seizures again like the old days, which is never very good, but she isn't addicted to the cannabis, and I can stop and start it with relative ease. Each dose is not harming her in unseen and obvious ways. That just struck me today, like an earthquake. I thought, too, about the questions I get from readers about how nervous they are to try cannabis, how they struggle with their disapproving doctors, how they wait for their doctors to lead their every single move.  I might get into trouble with this (not real trouble but more the kind of disapproval that some people have for those of us considered difficult, crazy or uncompliant), but I do what I think is best, and I don't give a flying foofoo what the doctor thinks (beyond the obvious). Twenty years has given me that confidence, and while I wouldn't ever tell someone to "disobey" their doctor, I seriously question the whole doctor says thing especially when it comes to cannabis.

Now, if I could only get up the nerve to do another wean of one of those AEDs, everything truly would be coming up daisies. In the meantime, I'm going to get those emergency supplies to the nurse at school. May there be no earthquakes when Sophie's at school, though. Please.

Other Cannabis Oil Questions Answered

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