A "Short Time"

I should be ready to sleep... Like, head-hits-the-pillow-and-I'm-out-cold sleep. But too many days I have felt the prompting to start writing this down... and I'm done ignoring it.

I finally wheedled a time frame out of the neurologist yesterday. I had started seeing Vivian have what looked like siezures and we traveled back to Seattle Children's for an EEG (which proved me right, unfortunately). She doesn't have a plain old mitochondrial metabolic disorder... not one that is listed on the mito website... not one that has a prognosis affixed... she has her own special breed of mito - one that looks like a handful of cases, mainly found in Amish families. I pressed him, but in a collected, unafraid manner, not frantic or in tears.

"How much time? How long did the children in the case studies survive?"

"A short time."

"How long is short? Five years? Four?"

(Noncommittal muttering)

"Let me tell you what we're thinking, Doctor... we feel like she has two years or less."

"That sounds about right."

So, now Chadd and I disagree about what he meant. Is that two MORE years or less? Or two years of life or less in total? Not that I can write it on my calendar either way when to expect to bury my daughter. It's a number I've been desperate to hear and then push back to the farthest reaches of my memory so I can enjoy every precious moment with her before she leaves.

We weren't sure whether we wanted to medicate her for the siezures. If her condition is incurable, why make her miserable with awful side affects? But, the drug seems like it won't be too bad. It even holds the hope that she may be more alert or make some advances developmentally. So, we will try it and see if there are improvements.

We will be meeting with a special team of people at the hospital who help families of children with terminal conditions. I don't know what they will do exactly... Chadd mentioned that our forethought about life saving measures may be premature, but the doctor said it was a good idea to have a plan before we're dealing with the shock of a medical crisis. Cold and flu season has started and a little thing like an ear infection can spread and spiral quickly, turning into a serious situation for Vivian. Vivian.

Vivian.

She won't go to preschool and trace over her name like James does, learning every letter of it and affixing it to her identity.

She won't have friends or play on the playground. I won't get the chance to pack her lunches and write her notes every day the way I do for Audrey...

She won't have the chance to stun us when special ed teachers conjure out hidden talents the way they have for Charlie.

She may not even walk beside her twin brother... and he may not even remember her.

She will burn through this life a candle with a short wick. I hope He takes her when I am not watching. I hope I lay her down one night to sweet unending dreams. I hope there are no polished white floors beneath her or an unfamiliar bed... or the jarring backdrop of alarms and tubes. I hope it is silent and warm... and that the comforting smell of her mother lingers and fades so gently it is imperceptible, like sunlight at dusk... as she blazes on ahead of me into the darkness.