Tuesday, October 6, 2009

Keeping Me on My Toes and a Tale

The Red Kerchief -- Claude Monet

I spoke with The Homeopath this evening and was happy to report that the adjustments we'd made to Sophie's remedy last week seemed to be working. Sophie has been alert and happy for several days and hasn't had a big seizure in over a week. Even the morning bouts are smaller and fewer. This morning she had none.


About ten minutes ago, when I was talking to The Husband in the living room, we heard the soft groan and rushed into her room to find her seizing. Sigh. I've written before about what I believe is my southern Italian inheritance -- a strong propensity for superstition and the power of the Jinx. When we got Sophie settled and she appeared to be asleep again, I left her room and went to my own. In about ten minutes or so,

I heard a strange clatter, so I leaped up from the computer

(to see what was the matter) and ran the five steps down the hall to her room.

When what to my wondering eyes should appear


I couldn't see where Sophie was at first in the darkness -- usually she's on the floor or in the corner by the pillows and toys. And while all of this was happening in a matter of seconds, I actually had the thought where is she? Is she gone? And then, I saw her standing on her bed, her back against the pulled down blinds (the source of the clatter), her eyes and hair wild in the darkness. I gently eased her very stiff body down and put her in her sleeping position, wrapping her tight in the blankets. Something is messed up and rewired during night seizures, a wrestling from sleep and concomitant confusion.

What is she thinking up there on the bed, back against the proverbial wall?

I'm just thankful that she hasn't walked off or crashed through it. I'm thankful for a lot of things. Mostly for those toes of mine.

and to all a good night.


  1. Elizabeth, even as you offer words that bring us into your world, I cannot imagine. Your beautiful daughter caught in something that takes her so far from you, even as you hold her in your arms.
    I hope you have so many arms in your life to hold you as you hold her.

  2. It never ends, does it?

    Katie doesn't have seizures, but she's trapped as well, often unable to tell us how or what she feels.

  3. My daughter (CB) suffers from noctornal seizures as well and they ARE far different from the day seizures. She screams in terror often right before or immediately following them. A few times she had what seemed like night terrors post ictally. It makes me realize and how scared and confused she must be -- with no words to explain this to her and she, with no words to describe them. It is heart breaking.

    Ok, now Im changing topic horridly to address your Ugg questions you left over at my Planet :) Yes, the hole in the toe of my $140 Uggs which I wore for just about one year still plagues me. i have meant to contact that company but laziness has prevailed. NOw that ugg season is going to be upon me soon (im in Joisey ya know) Im motivaated to get them repaired. im guessing your email to the company did not offer any results?
    i got a pair of whooga uggs. we'll see how they last. im just afraid everyone will think they're cheap knock offs (which they're not) bc no one knows the brand. you see - THESE are the stupid things i think of to avoid the more important ones that make me depressed!!! :) let me know what happens w/ your uggs, and ill do the same (feel free to email me too - my emails on my blog :) )

  4. I'm so sad for Sophie and her loss of explanation .... my children are so comforted to explain their dreams and night terrors. Yes .... thankful for those toes .....

  5. Hugs to you Elizabeth! I hope today is a better day. Louise

  6. it is obvious what she is thinking...visions of sugar plums...


  7. Elizabeth your beautiful Sophie. Your heart and your husbands and your family heart.

    How much love there is for your sweet girl. How lucky for Sophie to have you to wrap her in the blankets and let her fall asleep again.

    Dear friend, I find I love you more and more.

    Love Renee xoxo

  8. Elizabeth, my heart goes out to you and Sophie, to your whole family. It hurts my heart to read of these experiences, and I canNOT imagine what it is like to be in the midst of them, day after day, year after year. You are SUCH a good mother. Your countless daily acts of love, care and comfort are grace in action.
    I send you love, support and solidarity. I wish I could do more.

  9. I can't imagine, but in a way I can imagine. I am sure it is something similar to watching my son turn blue due to his heart condition prior to his heart surgery and then wondering when it would happen again. We have a friend whose daugher has mitochondrol diesease and she seizes up to 15 times a day. Just as they get it under control the medicine stops working and they start at ground zero all over again.

  10. Thank goodness she didn't fall off the bed! That was my first thought.

    My second thought was that it bothers me so much that not only as parents do we need to deal with chronic severe conditions, but that those chronic and severe conditions also have the ability to cause accidents. It's like there's always this lingering safety issue in addition to helping a child through an episode, whatever type of episode it may be.

    One of these things is enough! It's plenty! Must we also contend with safety!?!?

  11. Praying for a peaceful rest of the week...

  12. Indeed, what could you do but what you do and do so well? Something happened, that is obvious, but what?
    The ancient Egyptians used to call the realm of dreams "the conscious ignored" perhaps because of the belief that dreams were an intricate part of our everyday life, some saw them as mirrors of our reality, both present and future, but we do not often remember our dreams, or there is a part of the brain that refuses to record them for whatever reason.

    So it wouldn't surprise me if Sophie's brain skips the process of orderly going from beta to delta and that produces a reaction from the brain that manifest itself as some form of alert, and her response is to react physically since she doesn't know why this alert is happening. What would be the reflection of her awaken reality to her in her mirror? ah, to be able to know. All I can say is that your being there, holding her and reassuring her is all you can possibly do.

    Until some blessed human being decide to stop burning money on wars and use our resources for research that is. Blessed be your toes, I mean it. I also mean how much I admire you and how deep the feeling of friendship between us is. That is a blessing I am very grateful for as well.

  13. All -- These comments mean the world to me. All of them. I can't express to you just how much. I think I'll have to post about it, instead.

  14. Elizabeth I think I forgot to tell you how much I love this picture.

    Love Renee xoxo

  15. Such mysteries. I'd do anything for my son to be able to share a thought with me. I just wish I knew what they felt during a seizure, where they are. what its like....

    Sending my thoughts.



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