Life is this moment is, all over the place. The roller coaster of Dravet is literally up and down almost daily. I find myself so guarded against the disappointment and chaos that enjoying the fun, wonderful, positive, even normal moments is growing nearly impossible. I'm sure to give in to that, though, would be to fully give in to bitterness, fear, resentment, pessimism--everything that is the opposite of what Olivia and I need to stay strong against the monster of Dravet. But, how do you "stay strong" when you just aren't anymore? How do you yank yourself up by your bootstraps when they are now threadbare? Where do you go when you are at the end of yourself?
I have no idea.
I've decided to print out information to give therapists and other paraprofessionals regarding Olivia's condition, because frankly I worn out with flapping my jaws about it and feeling like I'm not heard or understood. So, maybe if they read the words of the doctor who discovered the condition, for example, they will become more enlightened. Here is just a tiny portion of what I've been reading the past hour:
"PROGNOSIS AND COMPLICATIONSThe outcome of severe myoclonic epilepsy in infancy is unfavorable. The affected children will persistently be affected with seizures. Partial seizures disappear and myoclonic jerks disappear or attenuate. Convulsive seizures are mainly localized at the end of the night. Fever remains a triggering factor and can still provoke epileptic status. Neurologic abnormalities remain stable. All patients are cognitively impaired (severely in 50%) but without deterioration after the age of 4 years (Guerrini and Dravet 1998). Many also have behavioral disorders, including psychosis. The mortality rate is very high, from 15.9% to 18% (Dravet et al 2002). The cause of death is variable, including drowning, accident, seizure, status epilepticus, infection, and sudden unexpected death."
--Charlotte Dravet
This isn't new information to me. But, even after a year of living it and after 7 months of knowing what "IT" is, this kind of thing still makes me want to flail myself onto the floor and cry. And CRY. And CRYYYYYYYY.
Sorry to be a downer, but that's where I'm at in this moment.
I totally feel ya. Even after 1 year with a diagnosis and 3 years with seizures, I still feel these ways often.
ReplyDeleteIsn't that funny how you feel like you're saying something so important but no one "hears" you? I finally started my blog so I could flap my jaw all I wanted and then people could choose if they want to read what I have said. By the way, that is a great idea to print info off for people so they can become educated and take the condition seriously, but then you still don't have to repeat your self over and over.
Remember, it's ok to cry :) I do it A LOT!