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.

Sunday, May 29, 2011

Saturday's Adventures

Saturday morning Curtis went rock climbing with some boyfriends.  Dezh and I were up by 7 am and were bored by 8 am.  I decided that we were going to go SOMEWHERE.  I got us dressed and packed into the car.  By 9 am we were headed north.  I knew that some of our Dravet Syndrome friends lived about an hour north of us and that they were having a garage sale.
After we were on the highway, I gave our friends a call to get directions to their house (I didn't even know what town they lived in).  They were outside having a garage sale so they couldn't hear their phone.  So I decided to call another DS friend who lives one mile away from the garage sale family.  She didn't answer either.  I got slightly nervous that I was just driving around without a destination.  But it was SO beautiful that I was ok with just taking a drive in the beautiful countryside.  About 20 min later I got directions texted to me from the second DS gal I contacted.  She also said she would meet me at the garage sale!
When we got there I didn't know if I would recognize my friends, considering that I had never actually met them.  I have gotten to know them over phone calls and our internet support group.  I totally DID recognize them!  The mom's name is Jennifer.  She looked straight at me with a puzzled look.  She looked at me like "That girl has a very familiar face, but how do I know her??!!"  So I walked up and and asked if her rats (she has several rats) were for sale.  She KNEW she should know me at that point.  So I told her I was Gail Benson a DS mom.  She said "OOOOHHHH"!  We hugged like good friends do.  After all we really are close friends, we'd just never physically met before yesterday.  Dina, the other DS mom showed up with her daughter.  We spent several hours talking and laughing and chasing our kids.  And I learned A LOT from these ladies.  I love them very much.  They are so good, smart, and sweet.
Jennifer's daughter is the first Dravet Syndrome kiddo, other than Dezh, that I have ever met.  She was so cute and sweet and tender.  I just wanted to give her a huge hug but I did want to freak her out.  I was SO impressed with her mobility and speech.  She could walk and run and jump just like any "normal" 10 year old.  It was awesome.  She also spoke well and clearly.
Then I met Dina's daughter.  She was very affectionate!  She is about 11 but climbed right into my lap and snuggled me.  It was about the sweetest thing.  She could speak just like any 11 year old I have ever heard.  It was amazing.  Her mobility was more like Dezh's.  She had Dezh were running around in the yard and looked just like each other: like power-walkers with elbows flailing!
These two girls are on the high-functioning end of the Dravet Syndrome spectrum.  I hope Dezh will be up there with them but so far she is in the middle of the spectrum.  However she is just 4 years old and things are constantly changing, so I am keeping up hope!
I had the most tender and positive feeling being around these mom's and their beautiful DS daughters.  I love them so much.  I am so lucky to have friends that would give up their whole day to chat with us.  I didn't intend to make them give up their entire day, btw.  I thought we would just chat for half an hour and then leave them to their sale.  But we were there for about 3 hours!
We got home tired and happy.  We took a bit of a nap.  No seizures happened, except maybe a short complex partial or absense!  After nap we took Dezh to creepy Uncle Tony and non-creepy Aunt Lyndsey's house to swim (neither are actually creepy at all).  It was lots of fun.  Then Tony and Lyndsey came over to watch a movie (and they brought their cute baby James of course) after Dezh was asleep.  What a great day with some great people!  Thank you friends for being so loving and giving!  We love you all.

Jennifer           Gail              Dina
  Melorah       Nadezhda     Sydney
What a frickin great day!  Thanks again for letting us spend it with you!!


  1. This is awesome. I'm so glad you got to meet Jennifer (and Dina)! Next time you get a wild "I need a road trip" feeling, head my direction! We are WAY overdue to meet in person and I want to get a great big hug :)

  2. How cool! I am glad you did that, I'm happy you got to meet them! :)

  3. You tell the story sooo much better! Had tears in my eyes reading it (and reliving it again!) I don't think I will ever for get your rat question! LOL Can't wait til we meet up again soon!!! :)