Wednesday, October 1, 2014

How We Do It: Part Part XLIX

All day long, here and there, I've felt like crying. I don't really know why nor do I think we have to attribute something to everything. Is Mercury in retrograde? Are there solar flares? Are half the animal species of the earth truly gone forever? Sophie has had several days of increased seizures. Last night, I heard the telltale cry as Carmen was bathing her. I burst into the bathroom to help. Sophie lay naked, fully exposed and jerking. Carmen was crouched down in the tub, holding her under the arms, protecting her head. Her legs were banging into the sides of the tub, her toes twisted. I reached down under her knees, and together Carmen and I lifted her up and out of the tub, lay her down on the tile floor, grabbed towels to cover her. There's not much worse for me in Seizure Land than the naked bathtub seizure. Even today, as Oliver and I filled one of Moye's beautiful bowls with cactus blend, carefully placed a few little cacti in, sprinkled tiny pebbles and sparkly stones around them, and placed an air plant in the hole at the top of the vintage baby, I saw Sophie's eyes in my head, dark and implacable. Is she ok? one of the boys called out from the kitchen last night, and I said, Yes. Go ahead and start dinner. We ate Korean-style beef on skewers and rice and broccoli slaw. Carmen brought Sophie into the kitchen and fed her while the boys and I finished up. Contrary to what you might think, I never, ever get used to it.  The fit, the flare, the start, the life goes on.


  1. My heart is with you, Elizabeth.
    Sending love, B

  2. Couldn't agree more. You never, ever get used to it . I understand why you feel like crying. So cry. Scream. Curse. I'm sorry Elizabeth.

  3. And you never will get used to it, I feel certain. How can you?

  4. So so sorry. Love to you and to Sophie.

  5. I can't even begin to imagine getting used to it. Sending love. Lots of it.

  6. There is no way to emotionally prepare or get used to a horrid bathtub event, and maybe the horror of it all keeps us going…:(((

  7. Bless you, Elizabeth. Of course you don't, how could you? Try to be good to yourself. You need comfort after that ordeal.


    You are an awesome mom and guardian angel.

  8. It doesn't stop and you never get used to it. Sending hugs.

    I've been weepy all day as well. It's probably solar flares:)

  9. How useless it is to wish things were different, and yet I do wish it. Sending you love, Elizabeth, and Sophie, too.

  10. Wishing you a peaceful sleep and hopes that tomorrow brings ease into Sophie's brain and body again. Ease and quiet for you all.

  11. Elizabeth, not only don't we ever grow inured to these seizures, they are the most disturbing when they return after we've enjoyed a reprieve like the one you've had thanks to cannabis.

    I know you're about as experienced a seizure-endurer as one can get but I find that when C. has a sudden increase in them that 9/10 times she's running a fever - the asymptomatic sort which C.'s neurologist calls "central".

    When there's a high thermometer reading I shriek with joy - the higher the number, the louder I shriek. You know, like any mother would to find her child has fever.
    I also wanted to respond to your post about the medscape report on vaccine-related seizures.

    We and all C.'s doctors knew prior to her MMR that she was neurologically impaired but nobody notified us of the increased risk for children like her. While the lawyers we later consulted believed we had a legal right to be forewarned, they couldn't find a single doctor here prepared to testify to that effect. Case dropped.

    I thought that quote you excerpted from Medscape was a gem: about a third of cases of epilepsy triggered by a vaccine are relatively benign, a new study suggests.

    Doesn't that translate as: The overwhelming majority of the cases were severe??

    And this news "should come as a relief... and increase confidence in vaccination."???

    PS - Your comments about the drawings mean so much.

  12. I think the feeling is like finding yourself at the bottom of the hill (again) after a difficult walk to the top. You know you can go on, you've done it before. Knowing you don't have a choice is not helpful.


  13. Hugs to you and to Sophie. Feeling weepy seems the most normal response.
    I love the photo, the unique arrangement, and your warm eyes and almost smile in the mirror.

  14. I say go ahead and cry. It's the body's natural response to trauma for a reason - purge that cortisol from your system in your tears, lie down with a good book and call it a day.

    Sending love and light, always.

  15. "Contrary to what you might think, I never, ever get used to it."... Yes.

    Wish I could give you a hug...
    Thinking of you!

  16. Rubbing the lamp and wishing this spate of seizures away. Back into a dark cave. Sending love. x0x0 N2

  17. xoxoxo.
    Sending love and quiet bright days, but free from flares.



Related Posts Plugin for WordPress, Blogger...