It wasn’t until much later that I tasted my own blood.
My mother, his grandmother, had called for an update. How is he? How are you? How is Lindsay? What happens from here? I started to tell her, to disseminate the information requested when, out of the blue, I started to cry. The emotions came all at once and I fell silent. Hello? Are you there? Did I lose you? I bit my tongue to keep myself from losing all control, to hold back the floodgates, to gain back some level of composure before continuing the conversation.
I could taste the blood.
* * *
We’ve suspected something was wrong—at the very least, something felt off—for years. Elliot is only five today (“five and a half!” would be his editorial correction here), but for the last two or even three years, we’ve caught the moments—always seconds too late for any possible documentation. There it was again! is a fairly common refrain in our house. Eating dinner. Crafting an art project. Sorting his Pokemon cards. Playing with Legos. The activity doesn’t seem to matter. The staring off happens anyway.
It comes in very short bursts. One second he’s there, the next he’s gone. The first 50 times were chalked up to daydreaming, to a short attention span, to the fact that maybe I’m just a boring parent. Kids these days. Yet even then, a feeling gnawed at a deeper level—some parental instinct, perhaps—that indicated something bit more sinister at work.
An entire episode lasts two to four seconds. Elliot blinks two or three times in a row and then, typically, looks off to the side. You can clap your hands, snap your fingers, gesture with a wave, say his name loudly or any other manner of distractive measures. The results are the same. The blinks. The stare. The quizzical look. The immediate return right back to the activity at hand. If you ask about it, there’s no recollection.
For every one we’ve caught, it’s a bit unnerving to think we’ve missed a hundred more.
* * *
I’m going to cry right now writing this part of the storys. I’ve never made my way through the memory without the accompanying tears.
The turning point came a few weeks ago. We were wrestling on the couch, a daily occurrence, and I’m pretty sure this round involved throwing the living room pillows at each other. His mother was unfortunately positioned in the middle, so we worked around her. At some point, Elliot crawled over the back of my wife to come toward me and, while doing so, he decided he had something to share.
Hey, daddy! Guess what?
The next 5 seconds play out in slow motion like a movie in my head, every detail forever engrained. A five-year-old frozen as his eyes slowly roll back in his head immediately after asking for my attention. I call his name loudly which causes my wife to turn around in response. I grab him, say his name, make gestures. I’m simultaneously trying to wake him and explain what I saw to Lindsay when, after the same few seconds, he comes back. A stroke? A seizure? He recollects only to say ever so softly, “I was going to tell you something.”
In a single moment, what once seemed confusing was now critical. Our home went from something could be wrong to something is really wrong.
I knew then that my son was headed for a table.
* * *
This past Monday morning, I watched any remaining ounce of belief in a literal hell slip away.
I’d dropped my wife and son off at the front entrance so they could check in for our first EEG appointment. I drove the car to the parking garage. As I walked into our local children’s hospital, I couldn’t contain my emotions (a common theme, if I’m honest). There were the girls with no hair sharing some lively stories in a circle in a visitor’s lounge. There was another smaller girl walking with some IV attached. Another boy was pulled along in a little red wagon (the primary mode of transportation here) with his head bandaged.
The surrounding narratives overwhelmed me. I also remembered our numerous friends who’ve faced similar stories.
We’re not sure how long he will live.
We’re not sure if it will come back.
We’re uncertain how this will affect her.
On that trip to the waiting room, I wondered how this wasn’t already hell on earth. How much worse is hell than a reality where countless centers are needed all over the world specifically for the care of children who are sick, who are afflicted, who are dying?
* * *
I have never been more proud of him or his mother.
They told us in advance to deprive him of sleep. Four hours the night before, they said. Easier said than done, I thought, for a kid who typically sleeps 11-12 hours each night. We hyped him up in advance. Dude, no school! You set the bedtime! My wife set up numerous creative stations to entertain him and got a few new toys/games to keep his attention. It worked brilliantly. He went to bed at 2:00 and woke up at 6:30.
A few hours later, we watched our sleep-deprived kindergartener lie on a table with electrodes attached to his head. It would be a bit unnerving for someone ten times his age, but Elliot quietly followed directions despite the obvious fear on his face. Twenty six nodes were placed all over his scalp and tested before being bandaged up. I tried my best to distract him by holding a mirror up for him to see what was happening while describing his transition into a “robot mummy.”
For the next 30 minutes, we sat in a darkened room and observed his chest slowly rise and fall. He was soon asleep and the tests began. I couldn’t help but watch the polygraph-esque waves on the tech’s computer screen. Is that a good sign? Is everything working like normal? Wait, what does that spike represent? Further tests followed, including a medical strobe light and a challenge to recall words said to him shortly after being stirred awake. He handled it so bravely. His mom was such an incredible support.
Before too long, the bandages were unwrapped, the wires removed. We gathered our belongings—his stuffed animals, various snacks, his Incredibles pillow and blanket—before the nurse stopped us.
“I’m not supposed to say anything, but I can tell you this much. Make sure he doesn’t take a bath alone.”
* * *
I’ve had a thought in all of this that I’m ashamed to admit, so let me write it down for all of you. Through the experience (the trauma?) of the last couple days, I’ve been asking myself (and maybe God) a question:
Should we have ever had Elliot in the first place?
I realize that sounds horrible. I cringe reading my own thoughts set to this screen. But if I’m being honest, if I’m aiming to exorcise some demon or channel some emotion in the midst of this writing exercise, then I have to admit the honest question that persists in the midst of it all.
I ask it because I’ve felt both possible answers as a father in the last 48 to 72 hours. It’s a protectionist instinct. For all of the heartache I’ve ever felt in my 40-plus years on this earth, there was no previous moment that could have prepared me for seeing my son on that table. There was no advice given to this point that could have withstood the blow of seeing the whites of my son’s eyes mid-seizure. If there’s a way to not have to experience these sorts of emotions, I’m going to at least ask the question—painful as it might seem, improper as it might be.
Even more importantly, I ask it for his sake. This world is so broken. This life is so painful. Before watching him lie helpless in that hospital bed, a seemingly infinite array of worries had already spun a parental web of concern. Will his teachers pay enough attention to him? Will he make any friends? Will this be a good learning environment? Can we trust this babysitter? Is this virus short-lived or something far worse?
It feels like the worries will only get worse. The world feels ever darker these days. Politics. Climate. Violence. Corruption. How does a parent even begin to protect the beautiful innocence of a child? These flickers of doubt, of guilt, of confusion surface and linger in times like these.
* * *
He calls anything on a person’s head “toppings”.
Despite the shadow side’s ability to break through in these trying moments, it doesn’t take much to bring me back to the beautiful reality of being Elliot’s father.
“Daddy, some people have toppings on their head like hair or a hat. Other people just have skin.” That’s true, buddy, I say, I never thought of it that way.
Within that silly anecdote lies the beauty of this whole thing. I’ve never thought of things that way before Elliot. I’ve never had these fears, but I’ve also never experienced these joys. I’ve never had these hopes. I’ve never had these reasons to be better.
Being his father is the most frightening responsibility I’ve ever felt. It’s also the most beautiful—even when he’s a robot mummy on a table.