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.

Monday, February 28, 2011

Her Knight Night! (longest post eva... so just enjoy the pics)

A mom of one of Nadezhda's dance class friends was helping to put on a fundraiser.  This event was called Her Knight.  It was a Daddy Daughter Dance.  The fundraising was put on by local women who want to strengthen families and promote strong relationships between Fathers and Daughters.  The proceeds from the event are for the local Assurance Care Center.

Sara, the mom of another girl from Nadezhda's dance class, offered us a scholarship ticket to the event.  Of course we accepted!  So a few weeks later the big night came!

Curtis wasn't feeling too well so he was taking a nap, but Mawa (Grandma) Benson and I started getting Dezh ready for her big night.  We fed her a snack, then gave her a bath.  Then we clipped her nails and painted them.  She chose gold polish for her toes and purple polish for her fingers.  Then we blow-dried her hair and did it up all fancy.  I put a little eyeshadow and blush on her.  Then we put on the tights and dress and shoes.  Lastly we added a purple, cloth and sequin flower to her hair.

She was so cute about it all.  She seemed to enjoy the pampering.  I loved it too.  I felt so glad to be dressing up my little girl to go out on a fancy date with her dad.  I know this sounds silly but my heart felt so warm because I was pampering her and it made her so happy.  She loves getting her nails done and is always trying to put on my make-up so it was so fun for her that Mawa and I were doing all of this for her.

We woke up Dad and asked him to get ready while we took some pictures of her.  The pictures were so funny because she smiled for the first few.  Then she thought the orange focus light on my camera was a flame from a candle to be blow out so we got tons of blowing-out-the-candle pics.  It wasn't bad thought cause it looks like she is blowing kisses!

trying to blow out the focus light
on the camera

Then the melt down came.  I couldn't help but laugh.  She looked like a spoiled little princess who didn't get what she wanted so she broke down in tears.  Actually that is pretty much what happened.  She wanted to take the pictures but I didn't want her to hold the camera for fear that she would break it so she had a temper tantrum!


crying while trying to
blow out the camera's
focus light!  the best!!

After Dezh composed herself (turns out she was hungry again so she ate a messy snack then we wiped her down), Curtis and Dezh posed for some totally cute pics.  It was a tender moment in the Benson home.


please check out the hair again:

So off they went for a fun evening.  These are the details I got from Curtis:

The place was all fancy
They got their pic taken by a photographer and we will get to see it in a couple weeks
Dezh managed to get away from Curtis several times and ended up in other peoples pics
She also made him lose their place in the food line 3 times
She danced on the dance floor
She saw balloons and was very excited to get one
She got a rose too and dragged it around like a mop
She got a princess crown
She saw some of her dance class friends
It was a good time and they both enjoyed it

Only pic Curtis took from the whole night.

Here is a video of the dance floor.  If you watch the beginning very closely you will see Dezh do her lift-the-elbow-and-shake-her-tail-feathers dance.  I love her.

I was so excited for them to get back home and tell us all about the night!  I could tell they had a good time.  Dezh came home and pretty much went straight to bed.  Here are some post dance pics:

please note: the hair-do made it through
the whole evening!

I want to say thank you so much to Sara for giving us all this opportunity.  I have no idea if Nadezhda will get to do this ever again, although I suspect she will.  You provided an opportunity that brought our whole family closer, not only Dad and Dezh!  So thank you so very much.

Also, Curtis, I don't know if you ever read this because you have a billion text books to read already, but I want you to know that I felt so proud of you for doing this.  You took her even though you weren't feeling well.  You took her with a happy attitude about going to a dance, which is most definitely not your favorite thing.  You were excited for her.  You remembered some details to tell to me! And the best part for me was when I told you about the ticket we were given (I was nervous to tell you because it involved a suit and dancing), your response was beautiful.  You happily said, "That will be great.  Dezh will love it".  You are so selfless (that is the opposite of selfish right? cause that is what I meant).  You thought of her first because you knew this was a special opportunity to do something for Nadezhda that would mean a lot.  So thank you wonderful husband.  I am so lucky to have you!


  1. I really loved this post. She is the cutest, and I love that Taco did that with her :) Thanks for all the details, I loved it. What a beautiful and special girl, I sure love and miss her.

  2. I really loved this post too! I loved all the details that Curtis came home with - I would be so happy with Jared would come home wtih those kinds of details - that is awesome! She looked beautiful!