Monday, January 3, 2011

2/3rds there

Sophie is not back in school until next week. She slept in this morning and it was around noon that I heard her stir. I went into her room and she was indeed awake but having her usual wake-up myoclonic seizures. These are jerks -- her arms and legs fly out and about --  happen in a cluster that can go on for twenty or more minutes. I sat, patiently, with her, reciting the Sanskrit words sa ta na ma, sa ta na ma over and over and over and then drew her up near me, lay my hand over her left temporal lobe and pretended to be a healer. I looked into her eyes and looked away for good measure. When I cradled her like a baby, I recited lord have mercy, christ have mercy, lord have mercy, christ have mercy over and over and over. When it all stopped -- the seizing and the praying, I went to the kitchen to get her drink. But when I came back she went into a full tonic episode with much groaning and whimpering. Awful. Just plain awful.

I don't know what possessed me or what was possessing me, but I was calm. When it was through, I lay her down and covered her with a blanket and lay back myself on her bed.

God damn Rite-Aid Pharmacy, I thought.
God damn Anthem Blue Cross, I added. I still don't have the new drug.

That made me smile -- at myself.


  1. Sometimes you just have to do what you have to do! I hope you both found some comfort. I also hope that Rite Aid and Blue Cross got some of your feelings!


  2. Yes, god-damn them indeed! I wish you and Sophie a peaceful afternoon.

  3. Whatever it takes to get through it- that's what it takes.
    I love you. And Sophie, too. And perhaps one day you will stumble on the magic words. Who knows?

  4. i don't know what to say. there's nothing i can say except if i could take some of her pain all of it i would.

    also if i could take my crossbow over to the right people i'd do that to.

  5. Just sending love.Just sending love.

  6. Those seizures are indescribably awful and they just make me wanna cry. But your transition from the old Sanskrit mantra to the very modern English one cracked me up. I'm sorry, I couldn't help it.

  7. holding you both in peace...
    and comfort.

  8. I have been in very similar situations with my own (and my clients/students) and can feel this so much.

    praying that new drug comes through for you.

  9. no one should go through this.




  10. I couldn't say anything yesterday...
    I wish I could make it go away for you, for Sophie.

    Sending love and courage and prayers and curses.

  11. God have mercy,
    Lord have mercy,
    Come, Lord Jesus.
    Help, help, help.
    Thank You for love.
    Thank You for the help that is here.
    Thank You for humor.
    Please bring ALL the help that is needed.

  12. I am so sorry. They are just terrible. Nigel had another one on New Year's Eve. These GD seizures make me sick.

  13. I don't think we have Rite Aid here but if we did I would boycott it.

  14. all that chanting seemed to help you at least.



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