Watching, Waiting, Enduring...

Sub-tropical depression Alberto was a part of our world last week.  As I woke in the early morning, from our second story bedroom window, I could see the tree tops swaying and dancing in the misty wet wind.  The rain, fine and intense, fell this way and that in wind-driven sheets, thoroughly drenching everything.

Somehow Alberto seems so apt for where we are in our lives right now.  The dramatic, dark, stormy skies--so changeable from one hour to the next.  The endless sheets of driven soaking rain.  And the feeling that this storm, moving at a 15 miles per hour--not away, but circling around--will never leave us.  We wait, sequestered in the house, as the rain pelts against the window screens.

Meanwhile, white powdery mildew fungus--which thrives in humid air and constant rain--threatens my zucchini and cucumber plants.  During a lull in the storm, I venture out with my spray bottle of baking soda water; in an attempt to save them, I spray the already drowning leaves.  Starting to remove the similarly caused but differently diseased leaves from my tomato plants, I glance up; the western sky is an intense and threatening deep, dark blue.  Yet another thunder storm is coming.  Driven back inside again, as the pelting of the wind-blown rain starts anew, our dog Coco runs from window to window barking at the thunder.  White window sills are now covered in muddy paw prints; the nearby wall splattered with brown splotches.  Sadly and similarly, Coco spent last night, beginning at 2 AM, bothered and barking.  Kindly and heroically, David--in an attempt to shield Awesome and I from the noise that threatened to interrupt our sleep--took him downstairs where his barking would be muffled.  For the remainder of the night, David dosed on and off in the den, resting on a recliner while Coco continued.

The storms have been hard on us all.

Our whole little world is in its own miserable watch, and wait mode.  There are the storms that circle us.  The big seizure that is due, but hasn't yet happened (so that we are ever watchful and worried).  So too, there is the continued push to finish our homeschool year--which seems to be dragging on and on.   And then there is the much-anticipated--for months and months now--mid June appointment with Awesome's second epileptologist--the one who is charged with taking us through the epilepsy pre-surgery process.   That appointment is still two weeks away on June 19, but it's always in the back of our minds, looming large in our lives, like a day of reckoning, connected to and controlling our uncertain future.  That appointment is the first step in a pre-surgery process that may or may not ultimately lead to Awesome being recommended as an epilepsy surgery candidate.

Surgery is one of the few hopes we still have for freeing Awesome from her intractable seizures.

Epilepsy surgery is something that we're totally terrified of--and so something that we're not sure we really want to gamble on--but something that we're simultaneously, strongly drawn to because of the almost-too-wonderful-to-contemplate possible hope it offers.  One that takes our breath away and makes our hearts beat faster and swell with the imagining of something that, were it to become reality, would be far better than winning the lottery.  It would be like waking up in a new heaven and a new earth.  Being born again into a new life.  Even more so because of the knowledge of the limiting, difficult life that had been left behind.  Dare we even contemplate how wonderful it would be?

We are drawn to surgery's promise as a moth is drawn to the light.  We are worried that the analogy might turn out to be more apt than we'd like.  Things can go wrong with surgery.  Weaknesses, partial paralysis, impairments, and always the chance that things will be made worse, not better, seizure-wise.  And all these possible dangers, despite the dutifully gathered data, the carefully made calculations, and the educated judgments of the epilepsy surgery conference (team) comprised of all the epileptologists, neurosurgeons, neuropsychologists, and other professionals in our Children's Hospital's Pediatric Epilepsy Program.  That conference convenes to review pre-surgical testing data and must unanimously agree that the benefits of a particular child's proposed epilepsy surgery outweighs the risks--and that the risks are acceptable.  That they don't involve possible compromise of the eloquent cortex--the parts of the brain the removal of which would result in the loss of sensory processing, the loss of language abilities, and paralysis of varying degrees.  Without the unanimous agreement of the epilepsy surgery conference, any hope of epilepsy surgery ends there.  As it should.  After all, this is serious business.  As our epileptologist--the same one who thinks this may be our way forward--bluntly put it: "It's a big deal to cut out a part of someone's brain."

And so it's an uneasy gamble we face, with real risks in both directions--risks in continuing on as we are and risks in considering surgery.  Epilepsy often forces us to live life between a rock and a hard place.  We must constantly "pick our poison."  We must choose from an array of choices we don't like.

But, at least for now, it seems, the way forward for us is through a pre-surgery process.  A process that hopefully will net, if not a cure, then at least some answers as to what is actually going on with Awesome's seizures.  Finally, perhaps we'll have enough definitive information so that her epileptologists feel like her complex case finally makes some sense.  That at least that is the hope.

The stormy weather circles us.  The rain soaks everything.  The powdery mildew fungus continues to smolder week after week, a threat that can be driven back but not defeated, always there, waiting for its opportunity to strengthen and spread again.  The seizures too, continue.  We have been driven back to our narrow strip of land between the two cliffs.  Right now we are happy to be here.  It seems safe after a month spent closer to the edge.  It also seems safe as we contemplate an uncertain future.

Sequestered in our safe space, we continue to wait.  And watch.  And worry.  And endure.  One day at a time.  Sometimes patiently; sometimes not so patiently.