Tuesday, January 24, 2012

episodes

At first, we called them "episodes."  Early episodes lasted mere seconds, and always left me guessing if I saw what I thought I saw.

She just looked like she was daydreaming. Or distracted.
The strange giggle that we heard made us wonder if she just had an inside joke with herself or something.

The word "seizure" never occurred to me.  I always thought seizures were more dramatic.

This one happened in the middle of our prayer:



I was armed with my camera that day, ready to document her quirks, determined not to let anybody tell me that she was just fine. I knew she was not.

We learned later that this was a complex-partial seizure.
We learned later that these seizures can also be very dramatic.

We knew then that something was not right.
And time moved very, very slowly while we investigated that "something."


Father, uphold all of Your children for whom time moves slowly today.  In the wondering and the waiting and the worry, assure us of Your unchanging love.  Be the Solid Thing for all of us, in this place that is constantly changing, where life is constantly threatened and those whom we love fall away.  Hold us close, safe in Your Son Jesus.  Amen.



6 comments:

  1. God's peace to you and Aggie tonight. That's all I can say. (I'm on chapter eleven of your book. Sigh.)

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  2. Thanks Leah.

    She read me two books last night like a pro and made me a picture of Jesus and the children (my children.)

    What a kid.

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  3. My heart goes out to you and your daughter. I also have Epilepsy. My seizures started when I was about 2 years old (I don't remember it). My parents say that it started from a very high fever that I had. I was put on medication and it was under control. They started again when I was 10. I had complex partial seizures from age 10 to 28. I am now 39 and have been seizure free for 11 years. In 2001 I had a Left Temporal Lobectomy at UW Hospital in Madison, Wisconsin and have been seizure free since. How old is she? I would love to talk to you about it and do whatever I can to help in anyway. My name is Cammi Gates. I am on facebook as Cammi Blackman Gates. God Bless you and your family!

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    1. Cammi- it is so nice to meet you! You also have quite and incredible story- wow! I am so glad surgery was helpful for you too!

      Aggie is now seven. Seizures started at age four, and surgery when she was almost five. She has been seizure free ever since! (They removed a tumor.) Now we just watch her and hope it doesn't come back. We are loving our seizure-free days!

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  4. Hello, My name is Leila. I am sorry i haven't read your book. I only read the description. I am already crying like a baby. In 2001 i had a little boy that was born pre-mature he only lived for 12 hours he had a seizure which in result he died of a brain bleed. About a year later i have a little girl named Kloie she is 9 now. when she was 1 month old and 11 days she had her first seizure. We, have tried all different kinds of medicine. Unfortunately, surgery is not an option for my daughter they have no idea what is causing her seizures. I can't say i relate to your book, because i haven't reed it, but from what i have read already i get what your saying. When i reed some of the things. I realized i wasn't the only one who felt that way. I would cringe when she climbs i still do. I don't say anything, cause i know have to let her be a child. I wanted to let you know that it is nice to know that i am not alone and either is my daughter. I have a really close bond with my daughter and most people don't understand it and they probably never will. i just wanted to say thank you.

    Leila Adams
    leila.n.kloie@gmail.com

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    1. Oh Leila, I'm sorry to trigger sad memories, and I am so sorry to hear of the loss of your little boy and now your daughter with seizures. May God uphold you as you love her through this and suffer with her. It is so hard to deal with seizures. I hope you have help and support around you, through God and family and a church family. And even still, it is not easy.

      I am so glad you found this blog.
      I hope you come again. There are many people here who know about suffering, who know what it is to be weak and loved.

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