First Post Ever.

I'd like to tell you Delilah's story. It is a story seven years old and counting. Many people have urged me to put this story down in writing.  It is so riveting, complex and layered, oh so layered. And here I am, my first blog post ever and I don't know where to begin. And starting at the beginning seems so daunting, dated and scary.  So I'll start with tonight.


Tonight, Delilah was helping me trim leaves from one of our cannabis plants. Yes. A marijuana plant of the Cannatonic strain. It is her medicine. We were trimming and rinsing leaves, preparing them for the drying process in order to make a tincture. While she was swirling her hand in a bucket of water and leaves, she suddenly stops and says "I'm done." Really? I say. There sure are a lot of leaves left. Are you sure you are done? "Yes, I am done." Okay, I say. I will finish up for you."Thank you" she says and walks away toward the television: we'd been watching "It's the Easter Beagle, Charlie Brown" while working. 


As soon as she makes it to the tv, she goes into a full on tonic clonic seizure. Banging her forehead on the edge of the tv table so forcefully and smacking the side of her cheek on the hardwood floor so painfully, I can still hear both sounds, though I cannot decide which sound is worse. Not that I have to. But surely the dent left in her swelling forehead is visually by far the most difficult to process.  


I carried her into the bedroom and while she seized I slathered arnica cream on her forehead and cheek, all the while cooing and soothing her through the 212th tonic clonic seizure she's had this year.  212 is an awfully big number. Particularly for this little girl who last year was having about one tonic clonic seizure per month.  Which really wasn't bad for someone diagnosed with a catastrophic form of epilepsy.  


Damn that Dravet Syndrome. 


Back to tonight.....she fell asleep as is the norm post seizure and I slip an arnica 30c pellet through the gap in her mouth where her two front teeth had fallen out weeks ago. We were alone, her and I. Josh was on his way home from work. When he walked in, he was surprised and sad to see us in our recovery phase. She really has begun to improve these last two months. It is always a difficult blow to all of us when she goes down.  


Our creaky floors gave Josh away and in an instant Delilah is awake.  She sits up, dented bluish egg in the middle of her forehead, right cheek bright red and puffy and says, "Hi Dad. How was work?"  My jaw is now on the floor right next to my socks. Really?  Josh answers as if nothing, "It was fine thank you." Then suddenly Delilah is out of bed and I know where she is headed. Earlier she had drawn a picture for Josh. It is a portrait of him with a note that says "Dear Dad, This picture is for you. Love, Delilah." She had hidden it behind her club house door. She goes over and gets it and does her usual routine when she gives a gift: "Close your eyes Dad." She puts it on his lap and says, "Open your eyes." He does. He loves it. He changes his clothes and slips into bed with her. She wants him to read "Red Rackham's Treasure" and he does. She listens attentively here and there, slipping in and out of light sleep. It is almost dinner time and she knows it. 


As much as I hate these seizures, I feel grateful for her quick and strong recovery, goose egg and all. Earlier this year she was having upwards of 20+ tonic clonic seizures in succession within a ten hour span, up to three times per month. That's roughly 40-55 seizures per month. Delilah's clustering seizures required phenobarbital and/or Depakote loads to stop. We were in the emergency room or ICU 3 times per month. That's three times per month since February....every month until May 30.  


May 30 was our last drug load and cluster. On June 4 we began using medical marijuana to treat Delilah's seizures. 


Organic, fresh juiced, cannabidiol (CBD) rich cannabis....ahhhhhh.  Sounds pleasant doesn't it? Except that it is truly a harsh drink, very green and very, well...green. And this type of cannabis doesn't get anyone high (yes, I've tried it), except if you heat it then you convert all those lovely anti-anxiety, anti-spasmodic, anti-inflammatory properties into tetrahydrocannabinol or THC.


Twelve isolated tonic clonics in June. Eleven isolated tonic clonics in July. Three this month thus far. 


Isolated tonic clonic seizures, with remarkable recoveries, no IV loads, no loss of cognitive function, no motor losses, no loss of language, no hallucinations, no insomnia, no ICU stays. Back to school 2 hours per week, play dates, day trips, library visits, walks, drawing, painting...it's all coming back. Recovery.

The isolated tonic clonic seizure is a twisted dream come true.  


Please don't wake me.