Visions of Sugar Plums

013I woke up this morning of thinking of Christmas – one Christmas in particular. I was 10, maybe 11, right around Beckett’s age.

It was the only white Christmas I remember.

The snow came down in buckets; the storm door that marked the front entrance of my childhood home sweeping away a fresh ½ inch of snow every time someone came inside.

It delayed the entire day. My uncle, a hallmark of every Christmas morning, showed up well after breakfast time, lugging his boxes of gifts up the steep front steps.

Those steps were an afterthought to my childhood home – built well after the home was lifted on hydraulic jacks to keep it above the flood-prone Pompton River.

My mom fell down them – landed on her ass and back – on numerous occasions. I did, too. Snowmelt fell off the roof onto those stairs and refroze. They were an accident only bags of rock salt could prevent.

But despite the delay (we didn’t open gifts until 10 a.m.), I loved that Christmas. Well, I loved every Christmas as a kid, but that one in particular. The rosy cheeks of everyone who entered, the cold rush of air swept inside ever time the hydraulic spring slammed the door shut, seemed perfect.

It was like a picture of what Christmas was supposed to be; the juxtaposition of inside warmth and outside cold; of family and friends. It was a place of peace, without worry.

It was safe; it was storybook.

Maybe that’s why it sticks.

* * *

I can’t quite tell you why I woke up with that memory today. My guess is that it has something to do with my family selling the hardware store I grew up in after 32 years in business this past week.

You see, 98% of our Christmas gifts, I think, came from the hardware store.

But it also dictated our reality. All that snow meant my family worked that Christmas – snow-plowing business parking lots and driveways, getting ready for the deluge of customers that would need supplies the next day.

Owning a small business meant always being “on”.

But I’m guessing the recollection stems from something deeper, too – a desire to tap into, or recollect, the kind of innocence those memories evoke.

Today, I was lucky enough to catch up with a very close friend of mine, a guy my age who recently underwent some pretty hardcore surgery.

We talked about the impact these things can have on you – the smack in the face you get when you realize that the innocence of a quaint childhood is a mirage, that death always lingers around the corner. It’s time no more predictable than tomorrow night’s football score.

And then, he said, “I can’t imagine having to cope with that knowledge at 9 years old.”

* * *

Truth is, I can’t imagine it either. And I live with a 9-year-old who, in his own way, is doing exactly that.

In the emergency room on Wednesday he told Heidi and I, “I think I’m going to die at a young age.”

“Why?” I asked.

“Because I just have so much wrong with me all the time.”

It’s a strange thing to hear your 9-year-old say.

I told him that was bull; that he would be fine.

And I don’t just believe that, I know that.

But he doesn’t.

The scars of his descent seem to become thicker the further we get from the incident.

I’ve always said I can’t handle another trip down that road; another trip down the road of bodily destruction via disease.

But I’ve always been focused on the physical.

I wasn’t ready for the mental impact, not 3 or 4 years later.

* * *

I’m no pro. I don’t know how to gauge this.

Most days are fine. Most days are normal.

He’s a kid. She’s a kid.

Like today, we ride bikes and play hide and seek.

There’s trips to the grocery store and Target. Apples and socks and paper towels.

Everything according to plan. Breakfast in the sunshine. A lazy lunch.

A movie at night.

And, really, no complaints.

Call it our own little White Christmas in September.

And these are most days.

But the days when things go wrong? They seem like poison inside. Like a fog lingers. You can’t slice through it. You can’t make sense.

Yet it bounces around all nonchalant. Today, all is normal. Tomorrow all is broken.

It leaves me feeling like a freak.

Poisoning you with my worries when things go bad; reassuring everyone when things go right.

The days when all goes right way outnumber those that don’t.

But the frequency of broken instances – it starts as a trickle, a drop, and then a drop just a little more rapid – moves forward.

This time almost moved me to action.

But now, the peace is so nice.

Why move?

Why be scared, when this time could be the last time?

Everything falling perfectly right into its little perfect place.

* * *

The great irony is, four years later, the only real danger any of us have ever faced has mostly been in our heads – the physical ailments either one-offs, or explainable as the normal aftermath of his situation.

That doesn’t prepare you for it.

But I’m also tired of talking about it, of writing about it, because it jams itself into my mind as fear – and the fear needs an outlet – leaving you as the recipients.

I’d rather write about White Christmases; where all is perfect.

Where it smells like coffee. And all I see is smiles.

And my friends haven’t stared death in the face.

And neither have my kids.

And everything isn’t gauged based on the calculation between the span of an average life and the risk of the selected activity.

Nope, mom just falls down the stairs, because somebody forgot to throw down some rock salt.

And instead of thinking, “Wow, she could’ve gotten seriously injured,” you laugh.

Because you’re 9.

And people don’t die or get seriously hurt in your world.

They get a liitle bruise when they slip on the stairs. And curse. And get back up, on their way with their day.

What a fairy tale.

What a fairy tale I used to live.

What a fairy tale some of us still do.


Seize the Moment

683We go through phases.

Euphoria: This is short lived. You get a promotion, a job, someone you love – or maybe you – does something fantastic. Boom, you get the high. Breathe, there it goes.

But misery, fear: that stuff lingers.

Someone is sick, something has happened that was unexpected. What is the diagnosis? Where will it take you?

These answers are never immediately accessible. And so you worry, and think, and research and analyze. And it’s not until long after the event or fear has passed until you realize the greatest damage that occurred was not in the consequence, but in the way you beat yourself up leading up to the end result.

These are the realities of our lives. This is long-term consequence for our family, of what we’ve been through – a sort of post-traumatic stress disorder that 3+ years after Guillaine-Barre rears its ugly head whenever it chooses.

We are shaped by our experiences. Heidi and I, yes, but most importantly, Beckett. Every abnormality is a potential trip back to that place.

It shows up when it wants.

We have no control.

*  *  *
The latest, but not the only, instance of this occurred last night and into today.

We put Beck to bed on Tuesday night at about 8:40 pm.

Around 9:10, his bedroom door opened. He walked out in his normal “can’t sleep” stupor.

“I started shaking and I couldn’t control it,” he said. “My head and arms were flapping.”

We were about to send him back to his room with the normal, “Dude, seriously? Just go to bed” tone when both of us caught something.

His speech.

It wasn’t right.

Heidi gave him a magazine.

“Read this paragraph,” she said.

He read it.

And it was all garbled-tongue.

L’s mashed. Syllables crushed.

It was like listening to a 9-year-old underwater.

“Do one of your tongue tricks,” Heidi said. (Beck can fold his tongue is ways that would be perfect for a Letterman ‘Stupid Human Tricks’ segment.)

He couldn’t do it.

“I drooled all over my pillow,” he said. “Come see.”

We walked back to his room and he showed us – big liquid stains on were there.

“See,” he said. “This is what happened.”

And, in that instance, his speech was normal.

We called the doctor. Explained what happened.

“Just observe,” the on-call nurse advised, “And if something changes dramatically, let us know or go to the ER.”

* * *

But nothing dramatic did happen.

He seemed fine in the hour that passed, as he lay by our side on the living room couch and Heidi and I researched furiously on the Internet for others who had observed similar symptoms in their child.

We learned about Benign Rolandic Epilepsy; and acknowledged the many similarities in behaviors.

We heeded the on-call nurse’s advice, and sent Beckett to bed.

Hell, if we slept.

I think we did. But my dreams were full of crap – dead friends back to visit; wars for the souls of my family. It was nonsense. The kind of sleep for people wrapped in trauma – real or created, the end result of overwhelming fear.

I checked on Beck at 12:30, when I woke from a nightmare, in which I couldn’t tell if a resurrected dead friend was an ally or foe, his intentions for my family members’ souls as ambiguous as this friend was in real life.

But Beck was cool to the touch and breathing normally.

I fell into a better sleep; and woke at 4:30. Did my workout and came home to wake him up.

* *  *

When I (we) woke him up, he was clearly groggy.

He complained of head pain. And stomach pain.

This is not completely abnormal.

Beck will complain of these things from time-to-time (especially when there is reason to).

I offered him Tylenol. He took it.

I offered him food (toast). He took it.

I let him chill.

In between, he seemed to behave somewhat “normal.” Within 30 minutes he said his head felt better.

I asked him about his stomach.

He said he stomach still hurt.

I offered him a breakfast burrito.

He said, “yes,” and devoured it, along with a quarter-orange, banana and apple.

We sent him to school.

* * *

I wasted the day at work, researching seizure causes, researching seizure complications in post-Guilaine-Barre victims, lost in my own fear.

As 9 a.m., 10 a.m., 11 a.m., noon, 1 p.m., rolled by, I thought, “Geez … how far have I come? I’m still crippled by each minor instance of adolescence? Always fearing the worst.”

At 1:50 p.m., I got the call.

From the school nurse.

“Mr. Baker,” the nurse said, “Beckett is in my office.”

“He said he may have had a seizure last night. And he’s staring at me, and his eye is twitching. I can’t quite put my finger on what is going on.”

“He did have a seizure last night,” I said. “And we were told to watch for abnormal behavior. I’ll be in to pick him up immediately and take him to the ER.”

“I think that’s a good idea,” the nurse said.

I put down the phone; closed out my business at work; and rushed to the school.

* * *

When I got to school, Beck was lying on a cot, looking miserable.

“Did you park close?” the nurse asked.

“I’m close,” I said.

I grabbed Beck’s hand, and walked him to the car.

We sped off to the Cardon Children’s Medical Center (godsend of living in a big city, FYI). He was behaving oddly, to say the least.

Droopy eyes. Slurred speech.

I described what I have described here.

The administrative staff indicated he would be admitted immediately.

He was.

They put him in a room. Took his weight and height. Judged his vitals.

And then the lead doctor on the Wednesday afternoon ER staff came in.

* * *

He’s okay, was the overlying message.

“There’s nothing we can do in the ER,” is what he actually said. “But I want to check with a neurologist.”

“Well,” I said. “Jay Cook is his pediatric neurologist. Beck has had quite a history.”

“Jay is here,” the ER doc said. “Let me check with him.”

The docs conferred and, ultimately, they agreed the symptoms Beckett presented were not cause for concern. In fact, they didn’t think he had had a seizure.

The ER doc made an appointment for us with the pediatric neurologist for follow-up and recommended us for discharge.

And that’s where the “confusing” started to happen.

* * *

The “confusing” occurred because somewhere between hearing all this, Beck became “okay.”

Lying in his ER bed, he returned to normal.

His personality came back. He asked to go Quik Trip.

Stomach ache? Headache? Only if you questioned him on it.

And so we went home.

* *  *

On the ride home, I asked him about his symptoms and he acknowledged, “I get worried, and I get nauseous.”

This has happened before, he said, but what to do with it, I have no idea.

I write this because I know this blog has become a resource of Guilaine-Barre surviviors.

Their fear is real; but as my wife and I are learning, sometimes what they fear is not.

It keeps us awake. It’ll probably keep you awake.

But dig deeper.

We’re finding the mental repercussions are lasting longer – much longer – than we originally thought.