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, September 06, 2011

Feeling so Sad for Her

Another Dravet kid died.  It was just a few days ago.  His name was Tristan.  He was the same age as Dezh.  He died because he wandered off and jumped or fell into a neighbors pool.
I can't imagine the pain his mom is feeling right now.  I feel sick for her.  She had a fellow DS mom post a letter to all of us DSers on our FB group about what happened.  The part that really stuck out to me was that she had always dreaded writing that letter telling everyone that he was gone.  I feel sick at the thought of life without Dezh, even though life with her is crazy and frustrating a lot.  It is more than wonderful at times too, which makes up for the hard crap.
I was just pondering...  Dezh also enjoys wandering off, or wandering where ever she pleases.  Although she is super ataxic she is a speedy, secret ninja.  She will also jump into any body of water with or without her water wings or life jacket on, and certainly without hesitation.  She can't swim and even if the water is shallow where she can touch, she doesn't stand up to catch her breath.  That is scary.
Thankfully these two hobbies of hers (wandering and swimming) have never occurred in this order or I KNOW we would be feeling the exact same heartache right now.  My heart goes out to Tristan's family, but at the same time, my heart is tucked in bed and fast asleep right next to the most precious child in the world.

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