Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Thursday, March 10, 2011

So much to say, so much to say ...

I feel like I have so many thoughts and feelings I want to record but I get busy and forget.  Then when I have time to write I wonder where to start.  I also wonder which of my thoughts people reading the blog will actually want to hear. SO... I am going to write what I want, when I want to write it - as long as it is convenient for my sweet family.
Tonight I put Dezh to bed, and like usual she got out of bed to run around her room and do some crazy stuff.  She tugged on a shirt hanging in her closet and the hanger broke and scratched her forehead.  She cried her pain-cry so I went upstairs to be sure she was ok.  We cuddled for a while and she said, between cries, "Brake, Brake".  Before I could see the scratch I asked her where it hurt and she put her hand on her forehead and said "Ow".
It is sad that she got hurt, but this is AWESOME that she was able to understand what caused her to get hurt - that the hanger broke.  Also she was able to show me where she was hurting!  She UNDERSTOOD my question and then RESPONDED!!!  This is refreshing!
Then we lay on her bed and snuggled for a while.  She and I often have the same conversations over and over again.  They are things her beautiful mind is thinking about and they are some of the only things she knows we can converse about.  We talked about the bandaid she had on her arm from a blood draw a few months ago and how the bandaid is now off.  We talked about how it WAS an owie but NOW it is BETTER (how do you spell owwie? owy? auwie? i can't figure it out.  Is it a real word?  Am I too tired to think of it?).
It is so nice to communicate with her even if it is repetitive.  Also, her memory is incredible.  She remembers.  She is a rememberer.  She remembers books, songs, people, situations, and how she had a bandaid but now her owie is better so we took the bandaid off.
(BTW: the bandaid was only on for a matter of hours- it wasn't on for months or something, getting all nasty.  it's not like she remembers because we let it stay on for ever.  we are not that gross.  i just wanted to clarify that real quick-like.)

Doesn't she look like Mary Poppins in this pic?
Look how she is standing!  I love this.
She really likes ol Mary Poppins so perhaps
she is doing some acting right now.

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1 comment:

  1. HilaryRApril 21, 2011 at 2:04 AM

    How awesome indeed that she told you about the hanger and where it had hurt her!! And the band-aid bit is still cracking me up, how you had to clarify how long it was on. LOL.

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