Five Minutes

Five minutes isn't a long time,

Except when a child is seizing.

And then it's an eternity.

And ten minutes

Is the equivalent of two eternities-- 

And two eternities, without intervention

Can become a serious--even a life-threatening--

Medical emergency

--------------------------

I can't put into words the emotions I feel

As I glance at the clock on the wall,

And once again rise from my chair

On the edge of the circle of moms.

Five minutes have passed since I last saw Awesome.  

But I must go find her again

To make sure, once again, that she's safe.

And that she isn't seizing.

--------------------------

This isn't a needless hypervigilance

Caused by imaginative anxiety.

It's a necessary hypervigilance

Prescribed by a neurologist

Ten days ago, in the aftermath

Of a nearly hour long status seizure.

For which we'd delayed rescue meds for far too long--

For one eternity, two eternities, 

Going on three eternities.  And this because

We kept expecting the seizure would soon end--

Though it didn't.  
And so, because of the delay, 

By the time we did use rescue meds

The seizure had such momentum

That rescue drugs no longer worked. 

Because a seizure is

Like a snowball rolling down a steep mountainside

Gathering strength and momentum.

The longer it goes on, the stronger it becomes

The stronger it becomes, the harder it is to stop

And the harder it is to stop, the more and stronger

Are the drugs needed to stop it.  

And sometimes the seizure

Gets ahead of the curve of rescue drug protocol.

So the seizure is always

A little stronger than the drugs

Currently being used to stop it.

And so, quantities of strong drugs

Compound one upon another

Until, when the seizure is finally stopped.

The heavy sedation itself and the dangers it brings

Become the pressing issue.

And that is exactly what happened

With Awesome ten days ago.

Because we delayed rescue meds, her status seizure

Gained strength and momentum.

It got ahead of the curve so that the seizure was

Always a bit stronger than the meds being used to stop it.

And so, Awesome continued to seize

After one and then two dosesof Diastat (diazepam)

And so too she continued to seize for another 10 to 15 minutes

After the EMT's administered a dose of IV midazolam.

In total she seized for nearly an hour--until we were

Halfway to the hospital in the 

Ambulance.

And by then Awesome was so profoundly unconscious,

Her system so full of emergency rescue drugs

("Enough to knock out three adults," explained the ER doctor)

That the reflexes that protect her airway

Were nearly non-existent;

Her drive to breathe, impaired

And her blood gases very abnormal.

Had any of these things taken even the slightest turn for the worse,

She'd have been intubated and placed in the ICU.

Instead, Awesome was admitted to the Special Care Unit--

The step-down from ICU--

Where she was carefully monitored for the next twelve hours

Until the danger was past and she regained consciousness.

And it was there on the Special Care Unit 

The next morning,

That the consulting neurologist

Very firmly told me 

That our Awesome was never, ever again

To be allowed to seize for more than 5 minutes

Without medical intervention.

That it was imperative

That rescue meds be administered

No later than 5 minutes into a seizure

Without fail.  Period.  No matter what.

--------------------------

I search

Inside, outside, upstairs, downstairs

The basement;

Front porch, back deck, 

The side yards

But I don't find Awesome anywhere.

Somehow, I've missed her

Most likely, our paths simply failed to cross

I try not to think about the other possibility--

That Awesome's lying alone somewhere, seizing

Instead, I simply repeat my search

Finally, I find her,

Not seizing, but hiding with another girl

Named Callahan in a basement bathroom

Giggling, talking excitedly,

And peeking out the door.

The two are part of the larger hide and chase game.

That keeps things so mixed up today,

And makes my efforts to keep Awesome safe

All the harder.  The game is 

More lively, more far-ranging, 

And longer-lasting than usual today. 

Twenty-five kids, all running, hiding, chasing

Coming, Going,  Moving steathily,

Talking excitedly, Glancing over their shoulders.

Having fun.  Never in the same place for long.

Shifting in loose groups

Like pieces of glass in a rotating kaleidoscope

Fanning out over, around, and through 

Every room and every space within an entire

Large two-story house with finished basement

Sitting on a large wooded, rolling acre-plus lot.

It's is a joyful, archtypal game of childhood,

One that most of us remember playing

When we were children. 

And seeing Awesome engaged in this game

Gives me a very deep joy and happiness.

Games like these are an essential part of childhood that

Every child should be privileged to experience

Often and well.

But, this game also makes my efforts to keep Awesome safe,

Very hard. 

All the informal things I usually rely on

To help keep Awesome safe--

The fact that her friends tend to stick together;

That they don't switch locations very often;

That they tend to move to a new location as a group;

And that they often provide 

An informal buddy system for Awesome--

None of these helps are in place today.

All the things I rely on to help ensure that Awesome is never alone--

That she's always with someone

Who would notice if she started seizing;

Who would notice if she suddenly became unresponsive;

Who would notice if she started acting oddly;

And who would run to get help if any of those things happened--

Are simply not in place today.   

Instead, Awesome's a free agent.

Today she's alone.

And though I often find her with another child

Or group of children

It's not always the same child

Or the same group of children.

There is no continuity.

And without continuity, it's easy 

For Awesome to fall through the cracks

And end up alone. .

--------------------------

If there is anything we've learned over the 7 years

Aweseome's had intractable epilepsy,

It is how dizzyingly quickly 

Awesome can go

From perfectly normal 

To seizing mode

To medical emergency mode.

One moment she's fine,

The next moment she's seizing,

Sometimes she's able to call out,

Sometimes not.  Sometimes she simply falls--

Which can itself be dangerous,

Depending on where she is when she falls.  

And five minutes later, if she's still seizing,

We're already in emergency medical mode.

Every minute that goes by after that

Without rescue drugs

Increases the likelihood that her seizure

Will gain so much momentum so quickly

That it will get ahead of the 

Rescue med effectiveness curve.

And increases the chances that

She'll end up, once again,

In the Special Care Unit

Or even in the ICU.

--------------------------

Once again I'm back in my seat
On the edge of the circle of moms.
I'll be here for 5 minutes.

While the moms talk excitedly
About possible field trips for the coming year
I try to come to terms with
Our situation.

Earlier, in the first half hour after we'd arrived,

I'd tried to make it Awesome's business

To find someone else--anyone--to attach herself to.

Someone who would notice if she started to seize.

Someone who could give her continuity

In never being alone.

Someone to whom she would stick like glue.

But she couldn't or didn't want to do that.

And so, each of the next four times I checked on her,
Awesome was alone.  Each time in a different place.

The pressing problem is this:
How will I keep track of Awesome in this situation?
How can I possibly keep her safe?

I've already excused myself numerous times
In the 30 minutes we've been here.
It seems that I barely sit down
Before it's time to find Awesome again.

Am I really going to continue to do this
Every 5 minutes
For the next two and a half hours?

Who lives like this?

In what world is it normal to pop up every 5 minutes
And leave the room to go check on your 14 year old?

I'm used to checking on Awesome every 10 minutes
At gatherings like this--but every 5 minutes
Is entirely different. 

Checking on Awesome so often
Seems close to absurd--
And frankly, it makes me feel crazy.
I barely sit before it's time to get up again.

The two realities in which we live
Sometimes seem so irreconcilable.

There is the reality where Awesome is a normal child
Living a normal life and expecting and doing
Normal things just like any other child.
In that reality there is nothing exceptional or disabled
About Awesome.  Not by any stretch of any definition.
Awesome is a neurotypical, able-bodied, very socially adept,
Cognitively bright, creative, and even, verbally gifted, child.

It feels wrong to treat her
Differently than her peers.  To hold her back.
To deny her all the experiences that
Any other child her age would have.
To make her life harder than it should be.
To limit her.  And in that reality,
Why shouldn't Awesome be allowed to
Run and play hide and chase just like
Any other normal kid?  She certainly looks
And acts just like any other normal kid.

That reality where Awesome is a normal kid
Is undeniably real.  And it is the reality
In which we live.

But there is this also this other reality,
The one that breaks in on Awesome's everyday world
With as much irregular regularity, as the rains that water
The earth so abundantly in this part of the world.
But not nearly so benignly.  Rather, this other reality
More resembles The Upside Down from the series Stranger Things.
This other regular reality is dangerous.  And powerful.  And disruptive.
And it is also potentially deadly--if not taken seriously.
And prepared for.  Watched for.  And expected when one least expects it.
When one least wants it.  And when that reality is the least convenient and helpful.
It is the reality that sees Awesome needing rescued promptly and decisively.
Where Awesome is an outlier among children with epilepsy.
Where, but for diligent hypervigilance, the unthinkable almost certainly will happen.

It is the reality
Where traumatic memories of the unthinkable are the imperative
To do something as unusual as checking Awesome
Every five minutes, to avoid
The repeat of similar situations again in the future.

Who can reconcile the two realities?
The two worlds?

I struggle to do so.

Half of the time 

I feel ridiculous keeping such
Close track of Awesome.
And the other half of the time,
I wonder if I should be leaving her as
Unsupervised as she sometimes is.
I wonder if I am not negligent
For letting her out of my sight.

She is so normal
And at the same time so
Anything but normal.

I shake myself back to reality

Where the circle of moms is now

Debating whether a field trip to

Mercedes--which has a higher age cut-off

And so would exclude younger children--

Or Hyundai--which would be a longer drive-

Would be better.  I have nothing

To contribute to the conversation.

It's doubtful that we'd

Be able to participate anyway.

After all, most field trips involve early mornings-- 

And Awesome is seizure prone in the mornings.

Besides, both field trips

Involve traveling to the middle of nowhere

Far away from prompt emergency care

And far away from good quality

Acute medical care.  

I have no desire whatsoever,

To add a Lifeflight experience 

To Awesome's medical history.

A medical history that is already far more interesting

Than I'd ever have liked it to be.

My mind is muddled. Confused.

I'm trying to solve an impossible puzzle

And failing miserably.
Emotions well up within me:
Worry.  Fear.  Sadness.  

And more confusion.

I've fear I've become a ghost
Who lives on the edge of others' lives.
I am here but not really here.
I'm not really a legitimate part
Of anything any more.  I've become a mere ghost
Practicing a prescribed hypervigilance
Coming and going endlessly.
Every five minutes without fail.

And so, I quietly excuse myself to go
Check on Awesome once again.
Worrying as I go.

Wondering too,
If it makes any sense for us
To be here this afternoon 
Or worry that we've passed the point
Such that being here at all

Is simply a pointless exercise
In frustration for both Awesome and me.
--------------------------

Having searched all the usual places in order.

When I step outside into the front yard,

I see Awesome.  

She's the lone girl with a group of four boys.

The boys are all toting water guns.

And they're paying no attention 

Whatsoever to Awesome

As they make their way stealthily,

Along the path, through the trees,

Moving as a compact group,

Looking this way and that as if they were

A group of soldiers on a mission in enemy territory

Expecting an ambush at any time from any direction,

And finally disappearing a minute later around

The side of the house, leaving Awesome

Standing alone. 

Somewhat sadly, Awesome looks up at me 

Where I stand on the front porch.

We both know I've found her alone 

One too many times.  And though some part of me

Doesn't want to do so, I find myself 

Firmly telling Awesome that

If she doesn't find a buddy by the next time

I check on her, we're going to leave

And go home.  By my tone of voice

She knows it's not an idle threat.

That I mean what I say.

It's not a tone of voice she often hears from me.  

Our eyes meet; Without emotion Awesome

Indicates her understanding and assent.

We both know the dangers involved 

For her in this situation.  

The memory of that serious seizure ten days ago

Is fresh in both our minds,

And though we both know I'm right.

Neither of us likes the fact that I'm right.

There's no anger at each other.  Nor even with the situation.

We're past the point of useless anger or even rebellion.

There is just the sad recognition that this is our reality.

We both know Awesome simply shouldn't be unsupervised.
For more than five minutes at a time.
And we both know that job is made easier
When she sticks close by someone else
Who would notice if she was suddenly seizing
Or acting oddly.

But at that moment, before either of us

Can say anything more,

Two girls come into view from

Around the other side of the house

And as Awesome turns to greet them,

I turn and go back inside the house.

You can't fight the reality that life hands you. 

Sometimes there is nothing to do but

Live in it.

---------------------
I slip back into my chair
On the edge of the circle of moms.
The moms have proceeded to making a list of the
Field trips that have been decided on.
I have my own internal business to attend to.
I'm now caught in

A whirlwind of my own emotions.

I feel like a terrible mom for
Threatening Awesome with that ultimatum.
Does she not deserve all the joys of this afternoon?
Does she not deserve to run free and be free?
At least a few times a month to feel like a normal child?
How could I threaten to take this away from her?

As I contemplate the question,

The same group of four boys, 

I'd seen earlier in the front yard,

Still toting their water guns

Noisily burst in through the back door

Interrupting the moms' discussion about field trips.

Totally unfazed, the moms look up. 

(Moms of boys have nerves of steel) 

Smiling, one of the moms asks the boys to 

Remember to close the door behind themselves

And try not to be so loud the next time they

Come through this room.

One of the boys closes the door, 

The group mumbles sincere apologies,

And then exit togetjer,

Ducking into the kitchen to grab a snack

Talking excitedly, in now quieter voices

As I watch the moms model

Grace with their sons, 

I realize I already know what I must do.

I was wrong to threaten Awesome with leaving.

If she can't find a companion.

Awesome deserves another 2 plus hours of being

A carefree kid.  Even if it means that I must rise

Every five minutes and go find her again

To ensure that she's not seizing.

No matter how ridiculous it seems to me

No matter how ridiculous it really is, objectively speaking.

It is simply my responsibility as an adult.

It is simply my responsibility as a parent

It is simply my responsibility to Awesome

As she struggles with the limits that Epilepsy

Imposes on her life as an otherwise normal kid.

And I will continue to do what needs done,
Willingly, and with love.

And I will continue to struggle to reconcile

All the difficult and contradictory

Realities of our lives with epilepsy

Into some kind of integrated whole

That might someday make

Some semblance of sense.  Right now

This seems a difficult, if not impossible

Task.  

But right now, what does seem doable is

Simply that I check on my Awesome

Every five minutes without fail

To ensure she isn't seizing.

So that I can keep her safe.

In order for Awesome to have

The chance to BE a normal child,

I have to be willing to

Accept that Awesome is not a normal child

That she is a special needs child

With an extremely extreme need for strict supervision.

And while some part of me would prefer to

Live in denial and avoidance of thinking

About the extremely abnormal side of things

Awesome's freedom depends on me

Not living in denial. 

--------------------------
The next two times I find her,
Awesome's again with Callahan.
The first time they are swinging on
A traditional porch swing
On the wide wrap-around porch,
The two girls are bent in towards each other
Engaged in conversation
And they look very happy.
The second time, I find them, they're
Swinging on playground type swings
In the backyard.  Again,they're deep in conversation,
Their swinging is less interesting to them
Than their talking with each other.
I feel the same joy for Awesome that I felt earlier
I linger for a moment watching the two from afar,
From the back deck, through the trees.
Awesome's trying her best
To stick with one person.
And Callahan is that person.

During the five minute check after that
I find Awesome in the house.
She's alone again.  This time, getting a snack.
I lean over and tell her not to worry.
We're not going to go home
Just because she's alone.  I tell her
I was wrong to tell her what I told her earlier.
She deserves to have a fun afternoon
And we're staying no matter what.
She smiles at me.  And rushes out of the room.
She has places to go, fun things to do,
People she likes to hang out with.

The next time I find her five minutes later,
She and Callahan are battling a bunch of boys
In an upstairs bedroom.  She is laughing and smiling.
And as I walk back downstairs, to join the moms,
I too am smiling.

This being an epilepsy parent is a hard thing.
But I'm learning....