I use them to make decisions, to understand my place in a situation, to assess the world around me. Some friends and family have heard me joke there are only three things I trust as fact: sports scores, the weather (measurements of what has already happened, not the forecast) and the value of the stock market.
All are absolute; none are up for debate.
So when I try to comprehend how my son has contracted not one, but two extremely rare medical conditions: Guillain-Barre (incidence of 1 per 100,000 in the U.S.) and benign rolandic epilepsy (incidence of 2.8 per 100,000), I fail.
But there is one thing I do comprehend: the scars. They’re nasty.
I live with a persistent fear; sometimes it manifests itself all over the surface, stealing my sleep and leaving my mind to run in endless circles. Other times it hides away to the point where I almost forget.
And then, just when I’ve almost forgotten, the disease, the condition, the syndrome – call it what you will – slaps me with a fresh reminder and leaves all of us grasping for the coping mechanisms we’ve created, or adapted, or whatever it is that we do.
* * *
The latest incident happened on the last day of our most recent family vacation.
Heidi, Beckett, Brody and I had opted for a big trip this summer. No more chilly waters of the Pacific; we crossed the country for the warmer Atlantic.
The week was perfect. Our family, and the family who joined us, spent countless hours in the 83-degree South Carolina surf. We cooked meals and ate together – 5 kids aged 8-13 and 4 adults. We played games, lounged in front of the TV, braved a few tourist attractions. A few of us caught a nasty sunburn.
You know: Quintessential, Americana, beach stuff.
On Saturday, June 27, we left Garden City, South Carolina to drive the kids up to New Jersey for their annual three-week stay with my parents.
We had stayed out late the night before – wanting to close the vacation with a nice dinner (try that with a group of 9 during peak tourism season on a Friday night). And then we got up early to get started on the drive.
At 6:45 a.m., we got on the road, letting the Google Maps app direct us on the best route to New Jersey. It took us down state highways, then county highways, then crosscut us down rural roads as it sought to avoid the massive traffic that area can be known for.
We were, literally, in the middle of nowhere.
No homes, roads with no shoulder and certainly no cell phone service.
Then the strange choking noises started from the back seat; my daughter let out a wail –“Beck-ETT!” – that I will never be able to unhear, and time took a strange and mysterious detour.
I looked in the rearview mirror and Beckett was seizing. Not the kind typically associated with rolandic epilepsy, which are partially-conscious facial seizures, but a full on tonic-clonic/grand mal seizure.
Breathing stopped or greatly reduced, uncontrolled shaking of the body, eyes rolled back into the head, total loss of consciousness.
Brody screaming again and again, “Beck-ETT!” “Beck-ETT!” “Listen to me.” I hear Heidi consoling him, “You’re okay, honey” in between “Oh my God”s.
And I’m driving in the middle of nowhere. Car hitting 70, 80, 90, knowing that wherever the hell I am, it’s nowhere to be.
I want a cop to pull me over; or to get the Google Maps to get me somewhere close to a city.
This goes on and on. The screaming. The shaking. Heidi screaming. An alternating, “Ed, what do I do?” and “Beckett” and “Oh my god.”
And then the shaking stops. His skin turns pale. His lips turn blue. His eyes – the whites of his eyes – turn grey. And the pupils symmetrically roll to the upper left.
He is motionless, slumped in the back seat, and I am convinced he is dead. Heidi thinks this. Brody thinks this.
We call 911. The car keeps rolling.
Holy fucking shit.
* * *
The cell phone is useless. When we can get through, the cops can’t triangulate the shitty analog signal.
And we’re so operating in the frozone – brain frozen, paralyzed in a weird state of time-slowed fear – we can’t explain to the 911 operator where we are.
If you want to know how life changes in an instant, I think to myself while driving, this is it. I actually have this thought.
One day you’re basking in the glow of the best week in the last four years, and the next your son’s supposedly benign epilepsy has killed him.
A part of my mind is already drifting to the countless police interviews, the paperwork, the dread. Hell, it’s all over the place. You don’t think straight in the midst of shock and paranoia.
And then, maybe it was Brody, maybe it was Heidi, but somebody yelled, “He’s breathing.”
* * *
We keep driving, a town appears, a cell phone rings. It’s the police.
They want to know what has happened. Where we are.
Beckett is jerking now. His body spasm-ing upright.
Brody is trying to lift his eyelids open, yelling, “Beck-ETT?! Talk to me.”
Every so often, he swings an arm, “Stop it, Brody,” he yells, like some sort of fog-induced automaton.
We know, instinctively, this is good. Better than what was just a few moments ago.
The 911 operator tells us where a hospital is.
Beckett’s breathing stabilizes. His color returns.
We ask him math questions. “What’s 2+2?” He answers, groggily, “4.” Then instantly falls back asleep.
We yell at him to get him awake.
We ask tougher math problems. We drive. He answers them correctly.
We get a digital cell signal. We research, in speed mode, what has happened.
We realize this is “normal” for his condition – the blue lips, the shaking, the grogginess.
At some point, pulled over on the edge of the interstate, we make a judgement call – armed with the knowledge from our doctors and the immediate fear passed – that we will drive on towards our destination. We will, for now, skip the hospital.
Living on the fly, we decide: the impact of going to a rural hospital, far from home where nobody knows Beckett’s situation, will be far worse than trusting the knowledge we’ve been given, but have never put to use.
Beckett has seizures. This is normal. And unless they meet certain criteria – they are not a medical emergency.
Truth is – because they always happen as he falls asleep – we’d never actually witnessed one.
So we roll on, trusting that Beckett, who is now passed out, is undergoing the expected recovery phase.
Hardest decision I’ve ever made? Yes.
For an hour-plus, we drive in silence, me thinking constantly about the consequences of what we’ve chosen.
* * *
An hour, maybe two, later, Beckett wakes up.
“Oh my gosh,” he says. “I feel so much better.”
Five minutes later, he demands the car be pulled over. He pukes.
He’s so unstable I think he’s going to wander into the interstate.
Heidi holds him back. Guides him to the car.
He falls asleep again.
An hour later, he awakes again, as we’re pulling into a WaWa in North Carolina.
“Wow, I feel so much better,” Beck says again.
He says he’s hungry. We get sandwiches.
Beck also gets chili Fritos.
I’m not sure that’s the best choice, but I don’t complain.
He houses the bag. Begins to ask us questions about what has happened, including, I kid you not, “What would you do with my Rubik’s Cube collection if I had died?”
Oh, my Beckett …
Three hours after the incident, he’s pretty much himself again.
Twelve hours later, we arrive at my parents’ house in New Jersey.
Beck and I eat pickles and play Pac-Man on an old video game system my mom has.
Then we go to bed.
Talk about a day.
* * *
The next morning, we were scheduled to jump on a plane and leave Beckett and Brody behind with my parents for three weeks.
Don’t think every part of me didn’t want to pack those children back on the Phoenix-bound flight with Heidi and I and wrap them in a tight cocoon.
But that Saturday night, before we went to sleep, Heidi and I talked.
We can’t strip Beck and Brody’s childhood from them; we can’t take away this thing the kids look forward to all year – three weeks with their grandparents in Jersey – just because of a medical condition.
We must rely on the research, the diagnosis (it is definitive, he will be okay with monitoring and proper management), and let them live their life. It’s essential for their mental well-being, for their own adjustment.
This is what I say.
The talk goes on and I point out that all of these scares have drawn us closer. That this family never misses an opportunity to tell each other that we love each other, to accept every minute together as something special, to cast aside the challenges and live.
I opine that some families that have it easy might miss these opportunities – so wrapped up in petty problems – that when something truly tragic happens they’re left with never being provided something that makes them capture/value/observe/share how important family is on a day-to-day basis.
We don’t have that problem. We live with so much fear that every day the four of us are together – happy and healthy – that those moments are cherished as the absolute blessing they are.
So we go, we leave them: to baseball camp and day camp and trips to amusement parks with grandma and grandpa.
And even though Heidi and I have been paranoid in the days since, we carry on with our lives: back to work; taking a planned vacation. Living it up in wine country like a couple of carefree twentysomethings, almost because the alternative – to sit around worrying – is so pointless.
We can’t control what these conditions will bring; we can only prepare for it.
So that’s what we do.
* * *
In the days that have passed, we have researched. So much.
We now know about epilepsy pillows and monitor alarms. Beck will have both when he returns.
He still has two weeks at the grandparents , but when he returns, we’ll go on with our normal.
Because the alternative is something … I don’t know what … I guess, at in its simplest form, something more awful.
One of the gifts I came across is a blog/chat board of kids with Beck’s form of epilepsy sharing their comments with the world. Many of them were adults who had since grown out of it, as is expected.
And the underlying theme is: let us live normal lives.
Our instinct as parents is to protect them, to shield them against everything. But that’s no way to live; that’s the way to raise broken children.
I could go on and on about the unexpected, about the things I worry about, but these last couple weeks, I’ve just had to let go. Ask my parents to put the kids to bed on time to minimize seizure risk, and let Beck and Brody live their lives.
It’s something all parents have to do – at some point – usually involving career decisions, sex, or something more traditionally life-changing: Just. Let. Go.
Heidi and I have had to do it when our child is 10. For his own well-being. For our daughter’s well-being.
The world is a scary place. But we can’t stop living. To do so is to miss the blessing of the good days; to let the whole thing go to shit. To lose out – and let our kids lose out – quite frankly, because of parental fear, our issues, not theirs.
I don’t know where this latest medical thing will go. The research tells us it could get worse before it’ll get better. And there are risks. Scary risks.
But we have got to keep moving on, weighing each decisions against the next.
Hopefully, none again along a freeway, but always with the full picture in mind.