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.

Tuesday, March 22, 2011

A Sweet Moment ... Slightly Bitter But Mostly Sweet!

We spent the evening at the park near our house yesterday.  The weather was perfect.  The park was crowded with seemingly kind folks.  Dezh played on the slide and the "rock wall".  She really seemed to enjoy herself.
I lost sight of her for a second and started to worry immediately.  I am constantly worried that I will lose her only to find her seizing alone in a corner unnoticed by everyone around.  I am also tempted to put her in a tee-shirt that says something like "Don't kidnap me.  I am an expensive kid with lots of health issues.  And if you don't know how to take care of me I will die right away so don't even bother taking me!  Thank you".  Do you think that would work?
But anyway, I found her after a few seconds of searching.  She was jabbering to her self, sitting at the table  in the little play hut at the park, just a couple feet from where I saw her moments before.  I came up to her and, like I had seen so many other kids do in that same spot, I asked her if I could have some food.  She got a half-grin on her face like she understood what I was saying to some degree.  I asked about 4 more times.  The look on her face went from "mom, you're crazy. can't you see i have no food?" to "what do i have around me that i can pretend is food?".   Finally, she reached down below the table and picked up some bark and said, "here".  It was so great.  Then I gave her some bark in return and told her it was money.  She really smiled about this.  She totally realized what the exchange was.  Food for money.  She was the restaurant person!  So cute.  I pretended to eat the bark, which she also thought was pretty great.
Right after this, 3 little kids came up to her in the hut and sat across from her.  I told them that I was eating the food she just gave me and that I paid for it with money.  They all started asking her for food and handing her bark money.  She loved it.  She was so slow in getting them "food" that they changed up the rules to the game right away.  They all crowded onto her side of the table so they could help sell the food.  It was funny.  They were all sitting so close together that Dezh was getting pretty squished but she loved it.  She was really playing with other kids!  She understood the game and they were enjoying her company just as she was enjoying them.  She had this look on her face that I will NEVER forget.  It was peaceful and content, as if her dreams were being fulfilled.  This game only lasted about 2 minutes but she was so happy.  It almost broke my heart that playing like this with little friends made her so happy and that it doesn't happen that often.  I need to provide her with the opportunity to play with friends more often I suppose.  She is such a sweetie.  I can't believe how perfect she is.

Here is a pic to remind you how cute she is!  This is a pic of her cooking naan bread
2 weeks ago with her cousin Scout's Flat Stanley!  She loves to cook.


  1. That is so sweet! She is so beautiful. I wish we were closer so we could have play dates.

    Love you.

  2. She IS such a sweetie. Cute story :) And I love the t-shirt idea!