Overnight

This is the first night I have spent apart from Vivian since she was a newborn.

A week ago, she had a cold just like her brothers.  And then a fever on and off for four days.  And she stopped taking her bottles very well at all.  I took her to the doctor because I worried about her dehydration and it turned into a chest xray revealing pneumonia and admission to the hospital for fluids.  While there, the doctor showed me her chest xray and how it looked like aspiration pneumonia.  So, the NG tube they placed won't be taken out at the end of her stay... it is a new fixture in our lives and will most likely be replaced by a G tube. 

"Tube" has been a dirty word around here.  We haven't wanted to artificially lengthen her life just so we can keep her.  We don't want her to suffer for our sakes.  But, if we can get good nutrition into her, it could be life changing.  If we start the ketogenic diet and her spasms stop, she could start developing mentally.  It's the only viable treatment option we really have.  If it doesn't work, we at least tried.  And, whether it's me feeding her a bottle or force-feeding solids, or a direct port to her stomach, my baby will be fed.  So, it's not the same, right?  The doctor says a stomach tube will not lengthen her life.  She will most likely die of an upper respiratory infection.

I held her in the hospital rocking chair.  I watched her sleep.  And, I thought how, eventually, she could aspirate on her own saliva if the signals to close her airway from her atrophied brain get bad enough.  My grandmother died of emphysema.  I remember when I learned in seventh grade what that really meant.  She drowned.  Her name was Vivian, too.

While walking to the elevator with Vivian on our way to pediatrics, I called for my Dad.  "Please come, Dad.  Can you hear me?  Please come."  I imagined him standing next to me while the doctor talked to me about her lungs being in good shape now, about how without a tube this would most likely happen again and again.  He would listen intently.  The nice thing about having a father who died before me is that he is not bound by physical barriers.  If I have a loving Father in heaven, then He will send to me angels to comfort and watch over me.  If I have a loving earthly father who can possibly come to my aid in his spirit state, I know that he will.  I believe that he does.

I was deeply, undeniably given experiences that told me when it was time to bring every child in our family into this world.  Maybe God did that so that I would have faith that, since He lead me before,  He will lead me again... and I will know without a trace of doubt or regret when it is time for one of them to go home.  When my Dad was dying in the ICU, the words kept filling my mind, "Why seek ye the living among the dead?" 

 "Now upon the first day of the week, very early in the morning, they came unto the sepulchre, bringing the spices which they had prepared, and certain others with them.

 And they found the stone rolled away from the sepulchre.

 And they entered in, and found not the body of the Lord Jesus.

 And it came to pass, as they were much perplexed thereabout, behold, two men stood by them in shining garments:

 And as they were afraid, and bowed down their faces to the earth, they said unto them, Why seek ye the living among the dead?

 He is not here, but is risen..."

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.