Sunday, October 3, 2010

What does it mean?

Sophie slept most of the morning, peacefully.
I spoke on the phone with several people because it was Saturday.
Sophie is doing much better, I said.
I knocked wood three times each time.
Sophie woke up and ate some lunch.
I dressed Sophie and she reached toward my face.
Her eyes seem larger, more intent, when she doesn't have seizures.
She hasn't had a seizure in days and days.
I did one of those email prayer chains recently -- the kind where good things happen on the fourth day.
You won't believe it, it says.
I'm not counting, actually.
I put Sophie in her stroller and we started to walk down the street.
I saw my neighbor, who has successfully finished chemo for advanced ovarian cancer.
I asked her how she was, and she said good and then knocked her forehead three times.
We chatted and caught up.
I told her that Sophie was trending better, that she wasn't having seizures.
I did not knock wood.
Sophie had a huge seizure in her stroller, under the waving trees.
What does it mean?
I was dusting in my room, and a small thin bowl that holds some jewelry, casual, tipped over.
The necklaces and rings fell to the floor in a neat heap.
I bent down to retrieve them and heard Sophie -- a whimper.
I went to her room.
She was having a seizure, on the floor.
What does it mean?
Yesterday, I thought maybe they had stopped forever.
Today, a sigh.
Hope follows hope
Knock three times


  1. I love both you and Sophie, Elizabeth. **sigh**

  2. I don't know what it means. There seems to be joy in the good hours--in your writing and in Sophie's eyes.

    That is a beautiful photograph of Sophie.


  3. love to you .
    I know nothing, less and less.
    the hardest thing is being okay with that I think.

  4. My heart hurts, reading this.
    I am so sorry that the seizures started again. I guess I should say I'm thankful that they stopped for a while, that Sophie and you had a bit of a rest, but I hope (pray) for so much more, so much better, for Sophie, as I know you do, too.
    I am thankful that you record your feelings. I feel I am visiting with you, that way. Good days or bad days, light or heavy moments, I am sending love to you and your family. I wish I could do more.
    I don't know what it means - agreeing with deb and From the Kitchen.

  5. I think it means that when we get comfortable we are fooling ourselves. Did you ever fall in love because you wanted to? Good things come when you don't expect them.
    I do hope they (the seizures)are a passing many things can influence their coming. Whenever Segev has a great day I know what tomorrow will bring and I steel myself for the inevitable.

  6. I think we humans want so tenderly and desperately to believe that if we just knew the magic words/prayers/handshakes/fingermotions/gestures we could change what is and what will be.
    I don't think we can. I don't think it works like that. But I think because we are human, we have to try.
    We have to.

  7. I am sorry that the seizure free days ended. Hopefully these recent ones were just a minor blip and you will go back to seizure free days again. I didn't realize knocking three times on my forehead would keep them away. I'll let you know if that works for Emily. ;)

    Our appt on Thursday is at 9am. How does that clinic usually run, time-wise? Anywhere near on time, or always behind? Our GI clinic gets us right in every time, but ortho is always at least 3 hours behind. Just trying to plan our day! Are you busy that day?

  8. this rhythm you have created here with words is so moving.

    i am sending you love, love, love.

  9. I wish I knew what it meant. Even more I wish for a secret combination of knocks and chains that would stop those seizures forever...and then I wish you the key to that secret. Love to you and Sophie!

  10. Hope. Hope is when you have those day of no seizures and maybe more of those days will happen. Faith. That you and your family are so loving and caring of Sophie. Prayer. That a cure could come...a medication would end the seizures.

    Your daughter is so lovely...your photos are deep and moving.

  11. So beautifully written. I do that too. During good times I honestly believe the worst of his problems will go away someday. Then bam. Hoping with you.

  12. i love the light surrounding your sophie...
    i love the idea of her wide pool eyes taking her mother in...
    reaching for your face.
    i want to protect you both.

  13. Sighing with you. Hoping. And praying.

  14. My prayers to you and Sophie.

  15. Perhaps in the overall context it's still a positive trend, with a little setback. I do hope so. Knock three times.

  16. You beautifully express what many of us do not have the artistes/verbal ability to express. This is a keeper. The photo is so beautiful as well.

  17. This is a beautiful piece of writing.

    I read a book a while back -- The Black Swan -- about how much of what happens in our lives is random (I don't necessarily ascribe to this, but it was interesting) and wrote down this quote:

    "Our minds are wonderful explanation machines, capable of making sense out of almost anything, capable of mounting explanations for all manner of phenomena and generally incapable of accepting the idea of unpredictability."

    I know that doesn't help when Sophie is seizing -- but if there was some way that you could let go of assuming there is a reason?

    I found this quote useful when I was constantly going back in my mind to Ben's pregnancy to come up with a "cause" for his condition.

    All of this seems to lead to the question of why, but there really isn't any valid answer to why our kids have to suffer.

    I send you warm hugs. xo

  18. I don't know what it means. I only know that you had those days, those good moments. And you and I and all those who love you, hope and pray for more.

    I'm glad you write.

  19. Praying with you. And knocking, too. Because I can't quite shake my superstitious tendencies.

  20. I hope that the good moments continue to stretch longer and longer for you all.

  21. im sorry honey.... i dont know what ANYTHING means anymore. when beautiful children suffer, how can we make sense of anything? Sometimes I believe this: "Things dont happen for a reason, they happen and then we create meaning from them." Sometimes I don't believe that. I don't know, but i always knock three times too when i talk about CB. Even when i knock, it still happens....what does that mean?
    big huge hugs :)

  22. Prayers and love on this end. I'm knocking on wood, like they do in Eastern Europe, under the table so the devil doesn't see.

  23. Yes indeed, what does it mean. I search for meaning in everything, and sometimes that can be a great asset, other times a curse. I hope today is a better day for Sophie.

  24. I know what you mean about thinking that maybe it will never happen again; that they stopped forever. I suppose there is always something wishful about being a mother, no matter how much evidence to the contrary.



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