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, May 24, 2011

Tiger Mom Retreat 2011

This was my first Tiger Mom's Retreat.  IT WAS WONDERFUL.  Tiger moms are a group of mommies who have children with Dravet Syndrome.  Many of us got together in Indianapolis, IN for a lil time out.  It was super fun and kinda busy but some how it was also still rejuvenating.
It was ...... well, ..... I just couldn't believe what it was like:
I couldn't believe that I walked into a room full of women I had never officially met yet I understood and knew them within a matter of seconds.
I couldn't believe that none of the 14 women had petty fights.  None were judgmental either.
I couldn't believe some of the dance moves I saw at Ike and Jonsey's!!!  sweet
I couldn't believe my ears:  After dancing the night away, we went back to the suite and chatted with each other about everything.  It was the strangest thing EVER to hear people in the same room as me (not on the internet) using the Dravet word and all the other terms that go along with it.  Dr. Khan is the only one we have ever met in person who knew more than we did about Dravet Syndrome but they ALL know WAY more about it than we do.
I couldn't believe how I didn't have to explain myself or justify my feelings.  They all KNOW!
I couldn't believe that anyone's happy or sad comment could bring so many women to tears so quickly. :)
I still can't believe how refreshing it was even if I did get only a few hours of sleep each night.
Thank you ladies.
I couldn't believe how much I missed my family.  I wanted to be at home so badly but I was also so happy to be there.  weirdness.

Dina M. and me at a fancy dinner (thanks Audra). we couldn't stop checking for texts from our families  :)

umm.  special.... cool glasses though.  i got them from the bachelorette party at the suite next door.

Dina N. and me, snuggling :)

cheers at our fancy dinner

all the Tiger Moms.  roar!

oh lisa, put your tongue back in your mouth :)


lisa is my idol, not just because she showered on this morning

the east coast alex mom's!  (both have boys with DS, named Alex, born ONE day apart...twilight zone)

my roomie: Rebecca.  AWESOME lass

sally and danielle

lisa and sally boogie down

buster's (from Arrested Development) dopple ganger  dancing with random girl

Laura has a million kids

Becky doesn't like her picture being taken but I  did anyway

Sally is going to kick everybody's booty for me

chatting at around 2 or 3 am

Trish has a 21 yr old DS kid

Kristen, are you eating the cookies I brought?

sally walked me back to my room, so sweet.  then we shared a kiss

brenda, you are amazing!  keep it up!

Thank you Curtis for being so willing to stay home with Dezh while I went away for the weekend.  I love you and I appreciate that you are so supportive.


  1. That is special. I'm glad you got to go have a weekend out and meet awesome ladies who are going through what you are. Thanks for letting us watch the Bachelorette over there last night!!

  2. So glad you got a weekend away with some major support (and some fun, too)! It's amazing to be around people who get it, and you and your child, without having to explain or justify.