Lazarian Mermaid

this photo was not staged

You know how it goes. No matter how hard I try, I can't shake the southern Italian superstitious woman in me, so I'm going out on a limb,  and stepping out to take a risk, plus throwing in all my cards, and working every cliche in the book to say that Sophie woke up this morning like some kind of Ripette Van Winkle. She was lying in bed exactly as pictured above, looking straight up at me and humming. I should preface this by saying that, up to this morning, she has been just this shy of catatonic. That's not hyperbole. I've been in when Sophie's not well, Mama's not well mode for a few weeks, a familiar condition, off and on, that I've experienced for Sophie's whole life despite all the cultural admonitions to not tie one's identity to one's children. I threw out most of that stuff along with the book What to Expect The First Year. That book literally went tumbling down the garbage chute from the fourth floor of the walk-up where we lived the first hellish year of Sophie's life. The admonition to not allow yourself to be subsumed by your child, along with put on your own oxygen mask before putting on your child's and attend to your marriage before your children are perhaps wise and fitting, but hell if I haven't failed at both over and over and over.

Any hoo.

I feel like a new woman this morning because Sophie actually woke up making her customary sounds (she's been primarily moaning or been silent for the last couple of weeks) and looked right at me when I went in to her this morning. She was also able to WALK into the kitchen and ate her breakfast easily. She did not have a big seizure or five big seizures. She was positively cheerful.

I'm going to shift the southern Italian peasant mentality of jinxes with an attention to Gratitude for the Present. This means that I am perfectly aware that this good morning could turn on a dime (another awesome cliche), Sophie could sink back into catatonia and I to the Overwhelmed With Grief and Anger But Still Putting On a Zen Face Woman. Right now, though, she's good and I'm good. The people of this shitshow do nothing better than living in the moment.

Reader, I imagine you are wondering why Sophie has had this turnaround? I have no real concrete idea, but I am going with the fact that she was OVER-MEDICATED. Here's the thing. Sophie came home from the hospital in late October on three times as much benzo as when she'd gone in. This was to "compensate" for the ripping off of the Vimpat that was giving her hives (although the docs said it wasn't, yet still ripped it off so go figure). Increasing the Onfi was something I agreed to because there are some interesting studies about the combination of Onfi and CBD. CBD can elevate Onfi levels and perhaps the increased Onfi is what helps to control the seizures? What I'm thinking is that Sophie's Onfi levels were periodically sky-high and causing the horrendous side effects she was experiencing (ataxia, difficulty swallowing, lethargy, CNS depression, excessive drooling, inability to walk). At the same time, since she's been on the drug for the last nine years, at one level or another, she is habituated to it and therefore sees very little seizure control. Basically, being on a benzo is a clusterfuck of enormous proportions. I was texting a fellow seizure mother this morning about it:

What a fucking shitshow and goddamn clusterfuck, is what I said. I'm not going to apologize for the foul language because it's entirely appropriate. I also told her that while I was going to work on weaning more of the benzo, I wouldn't wean myself from cursing about it.

In fact, I said, I'm titrating up on the cursing.

I'm going to have to figure out what the perfect sweet spot of benzo and CBD is, and that'll take some time. But hey! I have all the time in the world if I put that oxygen mask on first, right, and take care of myself (as this Australian article emphasizes).