I had to give myself a few days to digest all that we heard and saw at the biennial Dravet.org Conference - that, and getting through sending the kids back to school! My baby boy, Ryker is in Kindergarten now!! <sniff, sniff> I'm an emotional momma.
The Dravet Conference was full of blessings! Many little blessings running, walking and getting strolled all around! I think about 200 Dravet families were represented there - they estimated that to be about 10% of the Dravet population. While it was a great blessing to be surrounded by so many people that just "get it", it was also heartbreaking to see some of the kids and hear many of the stories there. We were assured many times by parents of the older more severe children that it doesn't have to be that way. Typically those older kids were diagnosed much later in life and often times got the wrong medication which made things worse.
We got some great information about things we hadn't thought about too much yet - things like school, dealing with grief, making time to care for MYSELF (yeah, right!), sibling support, the use of medical marijuna to treat seizures, etc...
|Cozy in mommy's bed!|
Jim's mom, Anita, came with us to the conference to help out with Luella. They had some children's activity rooms set up and she kept on eye on Luella there so Jim and I could attend the sessions. There were multiple sessions going on all the time so we usually went to different ones and shared info later. After leaving Luella with Grandma for the first time on Thursday afternoon, I was sitting in a session with Jim (one of the few we went to together) and thinking - this is the first time we had been alone together without Luella!! We've NEVER gone on a date alone since before Luella was born!! It's been almost three years! Anita was willing to be trained to give Luella her seizure rescue med if she had a seizure. We were also just right outside the door if she needed us. It was a strange feeling to not have her with us all the time! I know that's something we need to do more but it's hard for me to leave her...
|Luella taking a snooze on Grandma.|
|Visiting the clown and getting a purple balloon animal!|
|Luella and friend Melanie at the conference.|
It was a pretty emotional time. Having to face the idea that Luella might face some developmental delays or have problems with her gait and walking later. Seeing the word SUDEP (Sudden Unexplained Death in EPilepsy) in black and white on my conference agenda. Thinking about long-term planning for Luella. All things I'd rather not think about. Sometimes I feel as though I can handle anything and other times I feel like I'm at the bottom of a pit. I know the only way I can make it though this is by my faith. I'm so glad I can just give God all this "junk" and he will deal with it.
|Some new Dravet friends with connections to Luverne!! These are Melanie's parents (Melanie is pictured with Luella above).|