Cape Fear

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We’ve settled into a groove here. Life, in many ways, is far simpler since the events of earlier this year. My soul is tamed, soothed, educated. I don’t “want” things the way I once wanted things. I want my wife, my family, my children – healthy and by my side. This is it. This is all I really want.

Happiness is a way of life now. Because, since the events of 9 months ago, since Beckett has returned from the hospital and we’ve progressed through the months, I’ve had all I want. I’ve had them. The rest is icing.

Lately, however, I’ve become aware of something: When your happiness is balanced on any set of pillars , any damage to any one of those pillars – whether your “pillars” are material goods, a job, or in my case, people – can send you reeling. And what I’ve learned today (and in several other instances which I didn’t pay much attention to at the time), any perceived risk to them certainly rattles the foundation.

I am strong in many ways, for sure. But I have my Achilles heel – it is my love, my mind and my fear.  The place where those three meet is dangerous territory for me; this much is certain.

***

This morning, while I was still lying in bed, cuddled in a heap of blankets (oh, Decembers in the desert and their cuddly, 30 degree mornings …), Beckett got in bed with me.

“Dad,” he said. “My legs hurt last night. But I just dealt with it.”

“Did they hurt like when you were sick?” I asked.

“No,” he said. “It was different.”

Growing pains was my first thought; and then I dropped the thought of the issue altogether. Beck went on to discuss the most pressing topics for the morning of December 8, 2011 in his life – the fact that Brody got a Chewbacca figure in the Lego Star Wars advent calendar last night (and that he hadn’t gotten any characters, yet, just “stupid” ships);  several questions about when he could have a knife; if I remembered if how he likes to combine the way he used to say ball as a baby (baalll-ah) with the word sack, to create the word “baaalll-ah-sack”; something about poop. You know, typical 7-year-old boy stuff.

And then we went on with our day. I got up, got dressed, went to work.

At 11:46 a.m., I get this text message from Heidi:

“Beck went to nurses office due to ankle pain … saw him before I left to pick up Bro. Said it hurt like when he was sick. I think he’s ok, will see after school.”

Cue automatic drop of heart and stomach onto floor.

Guillain-Barre comes with a risk of relapse. Since the disorder is rare, the studies on relapse rates are even rarer. Most studies quote a relapse rate of 3 percent; some studies come in as high as 7 percent; some doctors – including Beckett’s pediatric neurologist – peg the potential relapse rate as high as 20 percent.

But the sample sizes are small. Statistically, most of the data is questionable. Our own personal experiences with people we know who had the conditions shows an almost nil relapse rate, unless they have the chronic form.

Either way, the text put me in a tailspin. A strict focus on the day’s tasks became a blur.

***

I came home for lunch. Saw Heidi who went to see Beck at school.

“He’s fine,” she said. He said his ankle hurt, but Beck thought his shin was his ankle. The shins are not typically a place where a GBS relapse would start – that would be the toes and fingers; or with a sense of weakness in the extremities.

Heidi was fine. Calm. Comfortable. And that put me at ease.

Her assessment was the same as mine: Growing pains.

***

I was at my desk at 3:30, building a book on the Fiesta Bowl – one of my latest projects for work.

The phone rang again. The screen said Heidi.

3:30 is when Beckett gets out of school.

Cue heart sink number 2.

Her voice was shaky. Her breathing fast.

“Shit,” I thought.

But what she was calling about had nothing to do with Beck. There was an accident at the main entrance to our neighborhood. A motorcycle had been crushed under a car – it was the same color bike as somebody’s we know who lives nearby. Had I heard anything? It was bad.

There was a body in a pile on the ground. Sirens were approaching. It was clear something dramatic had happened here -two people’s lives had just changed dramatically. One person might be dead. The other person, the driver of the car, might have just killed somebody.

A few minutes later, another call. It’s not the person we know, she said. The guy on the motorcycle was much younger, a few witnesses told her.

But still, I’m thinking, there it is, that reminder: Your fears are pointless. Life is on no one’s plan, but – call it what you will – God’s, the universe’s, fate’s, chance’s.

You can’t fear the future. It is unknown. And you certainly can’t control it.

There is this moment. This second. Today. And that is it.

****

It turns out that Beckett ran home from school. And then proceeded to chuck down his backpack and instantly climb the jacaranda tree in our front yard.

When I came home he was in the back yard. He and Brody and I played football. We all played Wiffle ball. Beckett drove in Brody with a two-out bases clearing homer. He avoided the tag at third. The kids won.

Later, at dinner, we asked him questions about what he was feeling. His answers were all over the place. His toes did hurt today. Then they didn’t. It did feel like he was sick. Then it didn’t. His legs, when they hurt, he said, “felt like a tree and its roots were squeezing all around his legs.” He felt weaker, then, “Wait, what does weaker mean?”

For me, this is like riding some kind of roller-coaster. I’m a worrier. I can live without perfection; I can live with half-assed, truthfully, in many areas of my life. But with my kids, uh-uh.

But trying to get a straight answer out of an almost 7-year-old who might be working you just a little? Good luck.

On the other side of the table, as we’re trying to get a sense of what, exactly, Beckett had experienced, Brody is seeking attention. “When are you going to talk to me?” she asked. “My legs hurt, too.”

I’m sitting there at the head of the table – torn.

***

Don’t worry. Our assessment tonight is that everything is fine. Beck is exhibiting no external or visible symptoms of a relapse. His legs are rocket strong. This evening he says he has no pain at all.

But all of this is a good example of, I imagine, anybody’s new reality once you face severe illness. I imagine a cancer survivor must always secretly, silently fear a day when they get the news “it’s back.”

Once you’re dragged through the ringer of hospitals and tests and fear and the mental sickness that follows – once you’ve seen that horror, every day beyond it is pure bliss. But, once the risk of it coming back surfaces, well, you know first hand the struggle it is to get through the fight. You know what you face if you have to go back there.

It’s a strange line we walk. Yes, I am infinitely happier. Like I say, every day with my family is bliss. I love them so much. I never, ever take for granted the ability to hug and kiss them and hold them in my arms.

But I am terrified, absolutely terrified of going back to the place I was. That place where I worried if I would outlive my child, if he would ever be okay, if my daughter would ever survive the aftermath, if she would have to grow up in some strange place where the shadow of her brother always lingered over her life.

I feel emotionally drained today. And the point is, this all happened over what is probably some growing pains. My fear was borne out of something that affects every kid.

Like I say, so strong. And yet, so weak.

***

The truth is, even though I’ve been wanting to make another post to this blog since the beginning of this week, I probably wouldn’t have tonight if it wasn’t for the accident Heidi had witnessed.

There really is no reason to share this incident and make people worry – we’ve had days like this before. Beckett really is fine.

But, somehow, that accident – that instantaneous loss of life – drove it all home.

It put my brain into that mode of theoretical thinking: when Beck experiences the littlest pain, it sends my mind into a cycle of fear.

When the fear sets in, I lose the gift of rational thinking.

I lose the perspective.

I lose the knowledge that we have no control over so many facets of our life.

The D on that math test the kid got? That bad word he said in school? The fact that he got goaded into being bad in his special science class taught by the ASU PhD students (and got expelled [true story])?

That stuff doesn’t really matter in the grand scheme of things. Those things matter only in the world you’ve created: Your expectations for success and failure, happiness and sadness, the future and what lies ahead.

In truth, the only thing that really matters is that you have them. Today. This minute. To have and to hold. To love and to cuddle with. To laugh with and have dinner with and throw footballs and observe bases-clearing, game-winning, Wiffle ball backyard homers.

That’s it. That’s all.

The gift is given daily. It’s taken without warning.

That’s why each and every morning hug; and each and every bedtime kiss is so goddamn precious.

With love, Ed

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