Poetic License

Poetic License

I’ve driven close to two hours to listen to a presentation on pediatric epilepsy. Intractable pediatric epilepsy to be more precise. The extra fun kind that sticks around no matter what. No matter how much sleep Ellie gets, no matter how hydrated we keep her, no matter how many strobe lights we steer her away from, no matter which medications we try. 

Meds. With their Godawful side effects. Ellie has already topped out on two and we’re running out of options.

The seizures keep coming. On the rare mornings when Ellie sleeps in I find myself staring at her monitor, watching for any kind of movement to show me that she’s still alive. The quick flick of a limb. Her head resting in a different position than the last time I looked. My greatest fear is the stealthy seizure that comes in the night like a rogue tidal wave to wash her away from us forever.

There are two neurologists setting up to give the presentation. One is young, probably just finished her residency. She’s pretty and has long blonde hair with no fly aways. She’s wearing a red blouse and a dark skirt beneath her white doctor coat. She’s sitting at a small table, flipping through the pages of her notes. Her hands are well manicured. They look soft. 

The other neurologist is a bit older. A tall handsome woman with high cheekbones and a thick accent. She’s wearing designer jeans and a black turtleneck sweater beneath her white doctor coat. As she begins the lecture, I’m only understanding about half of what she’s saying, but she’s fascinating to watch as she struts back and forth across the room, turning with dramatic flair in her two inch kitten heels like it’s a runway.

The doctors are talking about the different kinds of epilepsy, causes and treatments. I glance around the audience. We’re a mixed crew. Some people are dressed up, some dressed down. Some asking well informed questions, some not. We are every race, creed, and color but there’s one thing we share in common: the same long faced look of despair. None of us wants to be here. This is not a meeting about how to raise money for the junior football team or to decide who’s going to make the costumes for the spring musical. We’re here to learn about how to stop our children’s seizures. We’ve come to listen to this lecture to learn, to get answers where none have been given. We’ve come here for hope.

The presentation is coming to a close. I appreciate that these doctors have taken time out of their busy schedules to give this lecture but I’ve learned nothing new. These are all things I could have read on the internet or in the “Understanding Epilepsy” pamphlet I took home from the neurologist’s office. Just give me the bullet points. Better yet, give me the lecture and I’ll write it myself. Understanding Epilepsy: Good Luck. The End. 

The young blonde doctor begins to read something to us. It sounds familiar. My head begins to twitch. I recognize it. Is she really reading that? Out loud? To us?

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy,” She reads. “You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.”

 I discreetly look on either side of me using my bionic special parent peripheral vision to try to get a read of people’s faces. Does anyone else here recognize this blasphemy?! 

This doctor is not one of us. I would bet money on it. I picture her putting this presentation together, double checking her graphs, her diagrams. Then this extra smart doctor who understands all of the very complex and intricate parts of the human brain decides it would be a good idea to top everything off with this? Whatever happened to thank you for coming, good night? 

The doctor continues reading. “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, Welcome to Holland.”

I’ve heard enough. I need to provide this young doctor with a Teachable Moment.

I stand up, march to the front of the room and stand in front of the doctor.

I whip out my hand.

Give it to me, I say. 

Excuse me? says the doctor.

Are you a special needs parent, doctor?

No.

I didn’t think so. The Poem. Give me the sheet of paper with The Poem written on it.  

She stares back at me with a quizzical look. 

I tear the paper with The Poem on it out of her hands. 

This is OUR Poem and you can’t have it, I say, as I shake the paper in her face. 

This is what we have. We have seizures and autism and and cerebral palsy and syndromes and wheelchairs and acronyms and special diets and boat loads of meds that don’t help. We have babies that are born blue and brought back to life. We have doctors telling us our kids won’t walk, won’t talk, won’t survive past the age of five. We have helmets and seizure monitors and explosive oxygen tanks in our houses. We have a whole lot of things that no one else wants. But we also have this nice poem. At first we love The Poem until everyone and their mother has sent it to us and then after a while we begin to hate The Poem. But in time, as we learn to accept the hand we’ve been dealt, we come to love The Poem again. 

My point is this: The Poem is ours to do with as we please. 

I didn’t realize, says the doctor.

I know you didn’t realize.

Now. I’ll have to ask you to respect us and never ever read ‘Welcome to Holland’ to a group of parents with special needs children again unless you’re lucky enough to be one of us yourself. 

The doctor’s mouth drops open. Clearly her medical training didn’t include a segment on rude lecture goers.

I turn and face all of my new special parent friends all of whom I wish I’d never met and shake the crumpled piece of paper with The Poem on it high in victory. 

Ok, I say, who wants to go out for drinks at the Olive Garden?