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).

The Difference Between the Podiatrist and the Neurologist

Somewhere in Beverly Hills, CA

I texted a friend today from the foot doctor's office:

This ocean scene with sounds 
really makes the doc's office 
EXACTLY like being at the beach.

There's nothing wrong with my feet, and since I want to respect their privacy, and they are teenagers, and they are Teenaged Boys, and Teenaged Boys' feet are sort of horrifying (how many of you mothers out there took a look at your sons' feet one day, and they'd all of a sudden become terrifying as opposed to adorable?). The parenthetical happened to me between five and ten years ago, and it's a sad parenting day when you no longer have any desire to kiss that little foot but rather avoid under all circumstances even looking at that wart or those flakes or that ingrown toenail or the ridiculous length of that toenail, much less inquire how it happened. Hence, the foot doctor who does wonderful surgical techniques and cryo-freezing and dispensing of betadine and gauze pads and gives instructions to the person at the end of the hairy leg as opposed to the woman with her head ducked in the chair by the door busily texting. The foot doctor is one of those rare physicians (and men) that I trust implicitly, have literally nothing to say to beyond the usual pleasantries and secretly idolize because, frankly, I have no desire to tend to my teenaged sons' feet.

I did find the ocean scene television hilarious, though, and wondered how it'd go over in the pediatric neurology clinic right before you go in to your quarterly $575 Reflex and Drug Refill Check-up. I, for one, would have appreciated some kind of Matrix-type situation back in the days when I waited in the pediatric neurology clinic and would have gladly drowned myself in the television ocean. Sophie, of course, as a mermaid would have swum off to freedom. At the foot doctor, though, I am content to stare at the screen, the susurration of the lapping waves a perfect accompaniment to my silent hosannas to a doctor that can actually fix my kids.

How We Do It, Part LIX in a series

We live on a markedly diverse street with people of all races, nationalities, religious and sexual identities. African American, Caucasian, Korean, Philippino, Chinese, Orthodox Jew, mixed race, mermaid. Until this morning I have wondered whether we ever really see one another.

"I admire your courage, dedication and great love, " my neighbor said as I walked across the lawn, lifted Sophie into the car and twisted my head toward him to avoid her head banging mine. I had already loaded the wheelchair, bashed my head once. My tail of years glinted in the sun blue green. Swish.

The sea. To see.

He was in his pajama pants, an older African-American man walking his very old and very slow dog. He has chastised me in the past for not keeping my own on a leash. I see him daily. 

"Thank you, " I said.

That's really all it takes, good people, to see us through.

Happy 20th Birthday, Sophie!

My heart is full. Twenty years ago, you made me a mother. The years have flown by with bewildering speed, and they've inched forward, too, agonizing for both of us. Always, though, you, with grace. How blessed am I. How blessed are thee. A mermaid swimming out of me and away, a flicker of tail, swish.



The Cloths of Heaven

HAD I the heavens’ embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams. 

William Butler Yeats

Saturday Morning Light

When you arise in the morning, think of what a precious privilege it is to be alive -- to breathe, to enjoy, to love.

Marcus Aurelius