"Pause you who read this, and think for a moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on one memorable day." ~ Charles Dickens, Great Expectations
This quote sits above my desk, it is written in simple type on the front of a card I received congratulating me on the birth of my son. It is only with the passage of years can one fully appreciate the depth of this statement - how many small decisions and seemingly innocent choices go into a person's path, and the impact they have on where that leads. How one event, like the birth of a child, changes everything from that day to all the rest.
One memorable day.
They call it "grief porn" and other arbitrary names designed to lessen the overall impact, but dismissing the illness of a child is a difficult thing to do emotionally - especially if you're a parent. Stories designed to clutch at your heart and choke you with emotion usually involve the mention of the first time they realized there might be something seriously wrong. Perhaps it was the first time the child behaved oddly or a minor ailment with a major response. A spot on an unrelated x-ray, a lab value out of whack, just a detail that by itself could mean anything - or nothing. The day when their path abruptly changed, when life became finite.
Is today the day?
She woke up with dizziness and trouble walking ... it was 3 am it's not a far stretch to say it was the time of day. Her eyes wouldn't focus, but then again her eyesight is pretty awful without her glasses. Still, at 11 years old it's worth investigating so when it didn't go away off to the ER she went. Sent home with a diagnosis of viral syndrome and MRI results that showed something we didn't know was there, a stranger named Chiari.
Is today the day?
Flu runs its course, and symptoms completely resolve. Preliminary research says, "OK this is not normal - however many people have this their entire lives and never have symptoms or require treatment." Other terms in there though, are things like "there is no cure," "little is known" and "the only treatment is surgery." Follow up with the primary, who never heard of it either.
Wait for the consult with the neurologist. Not many local choices here, time to investigate names in the city.
The office is innocuous, it's in a revamped old barn and shares its space with a midwife group. It doesn't even have a verified address for GPS yet. It has a hell of a view though, with mountain ranges on two sides and the hospital on a third. The neurologist is a bit odd, and it takes a few minutes to get into sync. He warms up though and she relaxes enough to talk to him. He puts her through her paces, drilling her with questions and paying attention to things she says and does that her father and I would not have noticed. He finds a palsy we didn't know existed and shows us a few other obscure signs. Then he brings up her MRI and talks about what he sees on the screen, in conjunction with what he found today.
I had read her report and done my homework and now I could see the actual picture. There was my baby's glorious brain, the font of all the wonderful that is her. It is being compressed, held back by her own anatomy. I didn't need him to point it out, now that I knew the enemy's name I could pick it out of the line-up without difficulty. He started talking about the characteristics of the malformation. She said nothing, just listened. Then he said the words - he was recommending surgery. She slipped her small hand into mine and I squeezed it reassuringly while we listened, never looking at each other but at the picture on the screen and what it meant.
It meant that our life would now revolve around specialists and flying out of state and finding the best possible resources that would ensure the health of my little girl.
It meant that they want to cut open my beautiful baby's skull, her skull, and expose that brilliant brain to the outside world.
It meant the arrival of fear, abject miserable fear, of all the million small things that could go wrong. How the result of one sentence, "I am recommending surgery," could mean a lifetime pain-free... or one trapped in any manner of ways within the prison of one's own body.
I can do nothing, except give permission when the time comes.
We are in the parking lot, we had come in two cars because I was working. The sun is bright on my face and I am controlling my breathing so that I do not cry, not yet. My husband looks at me, he knows. I tell him that I will wait until I get in the car to have my nervous breakdown, and he reassures me that we will get through this, together as a family. The girl informs us that she is hungry and that since she is the one who has to have brain surgery that she gets to pick what they eat for lunch.
She wants tacos.
They get in the car and leave. I get in mine and stare out at the jagged teeth of the mountain beneath an impossibly blue sky.
Today was the day.
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