For seven years, I thought of life in seconds. The sixty it would take to get to a minute, the 3,600 in a long hour. The relentlessness of their racing, the number of giant horrible things that could happen in just a tiny few of them.
How many seconds was my youngest’s last seizure?
How many seconds could he go before another struck?
Every other measure of time or a day lost meaning. I didn’t need clocks, just a stopwatch. I knew everyone around me still had lunch times and bedtimes and weekends and vacations, but I didn’t think about life like that anymore. I just heard ticking.
I still kept a calendar to manage the frenzy of our other kids’ activities, intentionally chaotic to distract from the disorder at home. But time was flat, with no governance or guard rails or breaks. An endless stretch, a terrible kind of infinity.
By the time my son was 236 million seconds old, he’d seized some meaningful percentage of that accrual, suffering a capital punishment over and over again, as if he’d been born strapped in an electric chair. And what was he even guilty of? I mean, sure — he’d stolen a bunch of my sleep, but I wasn’t even interested in pressing charges. He was just a baby!
The repetitive electrocutions of his sentence robbed him of much of what he’d ever gained. All the quick babble that had turned into flowing and adorable toddler sentences receded like a tide going out and never coming back in.
The running and jumping and whiffle-ball hitting also got sucked out to sea. He still tried to play, but as often as not, his body was unamused. The couch became his life raft.
Epilepsy was consuming him. We forced all kinds of medicines into him to curb this disorder’s voracious appetite. For years, nothing worked.
Until one thing did.
What if you lived right in every one of those seconds your family used to count?
My son and I have a six-minute drive to his middle school. We are rarely rushing, and he is late every day. He needs a certain amount of sleep every night, and once he’s had that, he rolls over, dramatically fake yawns, and greets me over the monitor in his room that’s always on.
“Good morning, Mommy!” Followed by a question or topic for the day: Is it Tuesday? Is it almost Halloween? Is it my day off?
And then: “Whewwwww, I need a nap today.” He will not end up napping, but who doesn’t feel like this when first confronting getting out of bed in the morning.
He comes downstairs with an offering to hand me something he’s deemed important from his room — a water cup, his portable speaker, a particular book, a penny he’s found, a feather from the collection he keeps under his bed.
I squirt two syringes and one tablespoon into his willing mouth. He used to fight meds, back when they made a negligible difference. Now he complies, swallows quickly as if he understands that these particular chemical compounds cause the reactions a good life requires.
He eats a waffle and drinks milk extremely leisurely. He tells me knock-knock jokes. Or about one of his shows.
I tell him to take another bite, but he doesn’t want to hear it from me; he wants to hear it from Cookie Monster.
Fine: me want you to eat that yummy waffle or me will eat it!!
While he eats, I pack his backpack with small miracles: a lunchbox, the contents of which he will eat 100% and won’t even choke; a PE uniform in which he’ll run as much as he wants; a binder containing three pages of completed homework about syllables and calculator math, his name written independently on each sheet.
When he’s finally ready to go, we walk down the back steps from our kitchen to the car, and I might not even hold his hand. He might even jump down the steps like Catboy from PJ Masks. This copycatting used to make me nervous since animated guys can do all sorts of risky things that guys made of bones can’t.
But now his feet are sure. He lands like a superhero.
He climbs into the backseat and buckles his own seatbelt. He’s big enough to ride beside me in the front, but I can’t quite upgrade him. He’s still my baby, he still has that breakable past, a fragile shadow I can’t fully detach from him no matter how bright and directly the sun shines over his head.
I look at my son in the rearview every minute or so, a force of habit from my days of seconds, when I was always expecting an internal car accident.
“What are you thinking about?” I ask. He’s a teenager now. When his siblings were this age, I often left them to their window-gazing, recognizing some burgeoning divide where I wasn’t entitled to every thought they were having.
But with him, I can’t help myself. Another developed compulsion. Started just to be sure he could answer, a neuro Marco Polo, making sure he was still in there, that I could still locate him, that he wasn’t adrift in some unreachable deep end.
Now the game’s different — lower stakes, more fun, endlessly surprising.
“Mommy…” He’s never in a rush to answer a question. There’s always time to personalize. Or take a beat. Do you know how many seconds are in a day? Or six years? Or a life?
“Yes?”
“I…”
“Yes?”
“I don’t know how to whistle.” He says it like a sad confession.
“Oh, well, we can change that! Would you like to?”
“Yes!”
“We can work on it. I can teach you.”
“Really??!!” He’s incredulous, perhaps not previously thinking whistling was an attainable goal or a learned skill for everyone. Perhaps considering it like handedness? You’re born a righty or a lefty, a whistler or a non-whistler?
He gets out of the car happy. And I think if anyone should know how to whistle, it’s him. I text his speech therapist: how do you teach someone to whistle?
There are steps to take — lip strengthening exercises, actual whistles to use for practice. This relatively simple skill might take us a while to gain, but who cares — we have the seconds.
I drop him off and watch him walk up the path to his classroom beside his aide. I drive away, and I don’t worry what will happen during all the hours he’ll be away from me. His teacher texts me during the day, and I don’t panic at every ping. Messages once about emergencies are now about pleasantries, pictures of him pinching a pinch pot, recruiting for his running club, keyboarding unassisted.
And it strikes me — this is the measure of all this time. The astounding things that now fill it.
The questions.
The knock knocks.
The wanting to whistle.
Not counting the seconds.
Just counting on a boy.
This piece is so beautifully written and most inspiring.
I held my breath for the first part of your recounting your son’s early life. So painful for him, but I suspect your suffering was “uncountable”. How miraculous is modern medicine and how fantastic that your son is happy and growing. Thank you for the gift 🎁 of your sharing your pain of being a mother.