My knuckles were white. The body becomes accustomed to the constant flood of hormones; it’s like a pistol–cocked and ready. Bucolic serenity stretched out before me, my family surrounded me, an audiobook droned on to match the thrum of the tires, and yet the body was locked and loaded for the fight or flight response summoned so frequently over the past nine years.
Hypervigilance is the technical term. Logically, I knew this and the methods to combat it, but there is no logic even in a metaphorical gun fight. I hummed air out hard through my lips and shook out my hands to combat the effects. This was why we were taking this adventure north. We hadn’t even made a half hour in the car and already I was ready to tag out, beat down by the demons of our extraordinary life. This doesn’t even take into account the monumental demon slaying that occurred to get us to actual gear engagement and rubber meets road.
I drove; I always drove because it provided some false sense of control. When one is a pistol, locked and loaded, ready to blow, and everything in one’s world seems like a life endangering threat (and often is), even a false sense of control can soothe. If I could not beat hypervigilance on my terms I would beat it on its terms. Check it beckoned, so I did. Instinctively I looked up to the mirror just above the rear view to check on them–really, mainly on her.
I regretted my choice near instantaneously. My regret was almost as quick and, likely, imperceptible as the tiny eye movements that I caught in my stollen mirror glance. The eye movements that betrayed and revealed the specter of her disease following us, ever following us; the same ones that shattered my heart into a million pieces as they stole the sustained exchange of a loving glance; the ones so subtle her world renown neurologist struggled to catch them. And, dang it, I just caught them in my seconds long backward mirror glance.
Hypervigilance, the ability to perceive the nearly imperceptible, is a superpower and a curse. Logic is hyper vigilance’s kryptonite; “check the facts” my head screamed–a phrase I have learned to both love and loath. Really the kids were fine, content, excited even. The eye movements? In isolation nothing more than a phantom and if not in isolation still not a problem and totally something we could handle without any issue. I tuned back in to the thrum of the tires, it reminded me of my humming breath, I blew out hard, and I hoped this trip would remind me of myself without the nine years of pistol like reflexes.
“Mommy! This is the very first trip we are taking with no doctor’s appointments!”
I jumped slightly as his voice jolted my hair-trigger nerves. “Yeah buddy, that’s right; it is. Isn’t it so exciting?”
Specter be damned. The disease tightly interwoven into her DNA would last her lifetime; her childhood would not. His childhood is equally fleeting. The eye movements and the email to the team I was drafting in my mind about those tiny flickers could wait. It was summer and the road stretched before us. In the words of Ellie from the movie, Up, “Adventure is out there.”
Hypervigilance did not quiet easily. It tugged at my gut like the tension in elastic band that firmly rooted us in place and stretched no farther than a couple hours from home or her main hospital in a major metropolitan area state away for the past 9 years. Moments of respite and fun have always been planned around clinic trips and trips to events for the national charity for her rare disease. Simple trips to Valentine’s Day parties or friend’s baptisms interrupted by the shrieking wail of sirens flooded my memory. It threatened to snap me back and cause me to turn the car around.
“Look!” his voice erupted surprisingly deep for a fleeting moment for a six year old, as it could be at times, “Is that the mountain??”
The baritone in his voice, however childish and fleeting, always tugged at my heartstrings. It betrayed his childhood and previewed a future he was hurtling toward at quantum speed.
His arm remained jutted through the middle of the car. “No bud, that’s just a small one. They are pretty though, huh?”
She giggled in response. “Moose on the loose!”
She’s always loved the car. She’s always loved and admired him more.
New memories awaited. Four days, no doctors, no therapies, barely even a plan (though a well researched canvas of all the appropriate activities in the area), and an entire suitcase full of medication; because, as determined as I am to find our freedom this summer, I also understand it comes with certain requisites. And, I’m ok with that.
Lush green mountains climbed around us and dove into deep valleys carved by rushing water; we drove and subtly, almost imperceptibly, the tension on the over taunt elastic holding us in place snapped, gave way, and we were free. My shoulders eased as we entertained them with a car ride mix of eye-spy and scavenger hunt. We stopped and watched the most delicious of grins erupt on their faces as we allowed them to choose candy for the car ride. There would be no worries about over permissive parenting on this trip.
They both work so hard–literally untold hours of required therapies a week; and, this is their childhood. The work of childhood is play; it is the stuff of magic and fairytale. I couldn’t inject the two tiny letters back into her genetic code that would make it right, nor would I choose to given the choice (for those wondering: I would not do so because: 1) that is not my choice to make; 2) that could change her and I would not change her for the world. Though, I would do anything in this world to ameliorate the health issues caused by said genetic deletion.) I couldn’t wave a wand and make his struggles disappear. I could, however, create magic and breathing room right along side. And, we could make memories and rest.
That is exactly what we did as we broke free from our tethers of therapies and doctors, appointments and schedules, hypervigilance and fear; we made memories and rested. They drank in the pure magic of childhood, we basked in their unbridled exuberance, and I was reminded of all the innumerable reasons why I love my husband so dearly.
My knuckles flushed pink in the hot sun, my grip a lot more loose on the return trip; still, I drove. After all, four days is but a short time, and not enough to unlearn the last 9 years of engrained habits.
“Mommy!” his tired but jubilant voice interrupted the audiobook, “that was awesome, can we do it again?”
“Yeah buddy, it was. We’ll do it again.”
We certainly will do it again.