(CW: Sick babies)
It starts with a click. A sound so small it doesn’t seem like it matters, except when his face starts to turn pink. Then a twitch—the right eyebrow shivering, then later the eyelid, winking and wincing to the rhythm of that click in the back of his throat. The jaw joins in, as if toothless, he’s trying to chew off his tongue. His heart races. His face turns purple. Then his arm, his hand gripping my finger with that preternatural strength all babies have, starts jerking in time to that horrible click.
In Greek, it means “I seize,” and they called it the sacred disease, a sign of the divine. In Babylon, as in most places, it was demonic. You could return an epileptic slave as “defective” according to Hammurabi. In England they called it “falling sickness.” A hundred years ago, epilepsy would land you in an asylum. My baby would be in so much trouble, without the hospital that’s making me feel as if my whole nervous system is cycling on and off in a panic attack that will last a whole week. I remind myself of this nonstop, as more doctors and residents and nurses and technicians than I can count pass through the room: you are so fucking lucky to be right here right now.
Nobody can agree if these are seizures. Sometimes they seem like they must be. Sometimes they seem totally different. We have to do a chest x-ray. We have to do a CT-scan. He’s two months old and I will do whatever it takes, but for fuck’s sake, someone tell me what we’re looking for? They do, kindly, carefully, and I can’t focus. Someone gives him an IV and it misses and his whole arm swells up purple and he’s screaming. The heart monitor keeps beeping wildly, until the nurses just seem to accept it with a cautious eye. Finally (finally) they do an EEG and confirm: multiple focal seizures.
Even now, two months later, when I write this, I want to cry. I want to vomit.
There are approximately a bajillion reasons for seizures. I have been told most of them. Some are scary, some are concerning, some are kind of mundane. There are brain injuries (that’s what the CT scan was for; negative). There are structural abnormalities (that’s what the MRI was for; negative). There are viruses (multiple swabs of nose, throat, eyes, diaper area, plus lumbar puncture, plus antivirals to be safe; negative) and bacteria (same, plus antibiotics; negative). There are metabolic disorders (another lumbar puncture, more blood; negative). There are genetic disorders (blood, another lumbar puncture that didn’t work; negative). There are developmental disorders that might be one of these or another I don’t know they all blur together in a swamp of panic and needles and kind nurses and being sent off to get coffee so I won’t faint.
People faint a lot, they tell me, when someone sticks a needle in their baby’s back. Makes sense.
(The reasons they won’t tell me, I try to Google. I find one answer so indescribably terrifying I immediately throw up and almost can’t stand back up. It takes me a day to confess this to the neurologist, the one I like and am by then starting to trust, and I only do it because she insists. Negative–oh, God, negative, and she promises not to hide it from me if they know anything like that.)
They glue wires to his head—the fumes smell like a nail parlor, the kind with mannequin hands sporting fanciful acrylics in the window. They have to monitor him for days to watch the medicine take effect. Or not take effect. We’ll see. In the meantime, I can’t hold him. And he can’t nurse—he can’t even eat. He might throw up, he might aspirate, he might, he might…
The hardest part (aside from needles) is the fact that no one can give you answers. Even knowing he has seizures, it might be something minor (they don’t say this with a lot of enthusiasm). It might be something lifelong and serious (they say this quickly so you don’t dwell). They have to do tests and they might not find the answer. You might never know. Even if it stops, you might never know if it’s coming back.
I start to realize that this is really the terrifying part of being a parent: Ultimately, you cannot protect them. At any moment, I could lose them.
I refill my clonazepam prescription.
I write a lot about parenthood. (I think sometimes that people don’t notice because they get distracted by the fact that people also have sex in my books and this is something everyone seems to get het up about.) I write a lot about that part of parenthood where you have to let your children go off and make their own mistakes and their own lives, even if it scares you. The point where your family becomes your “family of origin.” It started, if I’m honest, as a way to wrap my head around doing this with my own parents, the push and pull of trying to escape into adulthood that honest to god felt as if it took until I had my own children to settle.
I feel like I get it—I can certainly imagine it. The thought of my own little sons deciding to move across the country or across the world leaves a knot in my stomach even as I know that I’d want them to have adventures. When they’re older. Like twenty-five. Or you know, thirty-five.
But buried in this, I see now, is the truth that being a parent means more than accepting you don’t have control over your kids—you don’t really have control over anything. And you can’t let them know that too quickly.
My older son is four. I tell him his brother’s in the hospital because the parts of his brain aren’t taking turns with each other. They’re shouting out of order, and the doctors have to figure out how to make them take turns again. He can’t visit because his brother’s on a floor with other kids who are very, very sick, and any germs he might have would be really bad for them. He tells me that he wishes he were a doctor, so he could touch his baby brother’s hand.
The grease pen they use to mark where the leads go is bright red, the same color of my baby’s blood in the endless samples. “Why do you use that?” I ask. “It looks ghoulish. Don’t they make green or purple or black?” The technician agrees—it looks terrible. But she doesn’t have a reason. I tell her that the editors I know—the ones that still work on hard copy—have switched to other colors of ink because red has become kind of traumatic to writers. I don’t know if it helps. Maybe we just end up scarred by green.
I have a book due in two weeks. I know there’s no chance of an extension—my publisher’s made that very clear. I finish it, or it goes away. I write the same scene for almost this whole week. It’s dead, the emptiest thing I’ve ever written. I don’t have enough empathy in me to pretend to be a selfish cambion. On the third try, I change the viewpoint to the main character’s father, and it’s hard not to let my fear bleed all over the page. I want to throw out everything I’ve already written: I feel like I know things now I didn’t before. I feel like everything else is pointless.
But if I do that, this book will be abandoned. Someday I’ll care more about that. I’ll care a lot. And here, only here, can I control what’s happening.
There’s a baby next door that gets morphine in her bottle. There’s a boy down the hall who had to be intubated as I walked by, off to feed myself hospital food. I hear the nurse calling his parents, He’s not doing well. You need to come down here. As much as I’m scared for my baby, I’m terrified for these babies, but I ask every day when we can leave.
Enough phenobarbital and he stops having seizures. He finishes the antivirals, the antibiotics. He goes long enough and I plead hard enough that they let him eat again, let me nurse him. He kicks the second port in his foot right out and they opt to leave it out. I cling to every victory like someone’s going to steal it back, and I fight for everything in reach. We move to the regular floor. They start him on oral medication. They finally agree to let his brother visit. After a week, they make plans to let us go home.
The first night, I sleep with his medicine on the nightstand and I miss the heart monitor’s frantic, misplaced beeping. It’s a preposterous amount of medicine—it takes nearly five minutes to get it all into him—but the neurologists assure me that it’s only a moderate dose. We can go up if we need to. The next morning, he spits up bright pink, a mix of milk and red dyed syrup. I call and call and call, trying to figure out the messaging system. Apparently everyone else is calling too—it takes hours to hear back that it’s not a worry, but they’ll log it. He’ll probably keep doing that.
He starts smiling. He starts laughing. He kicks like a mule and swats at everything. He hates being on his stomach, but I make him stay any way I can. His neck was “too floppy” and if it’s because of the same something that makes him seize then I’m glad the neurologist spotted it, but I’m not going to let them do another lumbar puncture without making sure it’s not because he’s got a gigantic head and was lying on his back for a week straight. Sure enough, he figures out how to roll onto his back…then he figures out how to roll onto his belly, and decides it’s not so bad.
Every time he flinches, my heart stops. I can’t stop staring at his right eye.
Three months pass. There are no more seizures. He develops normally. He develops ahead of schedule. He likes the Keppra but he learns to push the phenobarbital out of his mouth with his tongue. The neurologist is so surprised and pleased at his smile and his giggle and his neck strength that she moves up his EEG from six months to the next day. It comes back normal.
I cry again and scream in the parking lot of the pediatrician’s office. It’s funny how the joy and sorrow can make nearly the same noise.
There’s still no reason. There’s still no answer. The hope is that there will never be an answer. This will be a terrifying thing that happened and we’ll never know why. This was the worst week of my life, and while it’s foolish to hope nothing will ever top it, at least I hope nothing tries for a long while.
This hit very close to home, when I grew up and turned 1.5 years old my body had a huge seizure and my father told me the story of that night running out in a rainstorm waiting for the ambulance to come.
For him and my mother it looked like I was dying and the sights of dread burned into their memory. I was later diagnosed with epilepsy and spent most my childhood on various medicines and drugs.
Later in life it went away thanks to heavy medication and I have since lived a normal life. Became a father just 1.5 year ago, but three weeks ago my life changed a little. Heard my wife screaming from upstairs in panic and I rush up to find my daughter having a huge seizure. Even thou I took control of the situation and called the ambulance quickly, the look at my daughters face as she was grasping for air, twitching and turning blue will haunt me for the rest of my life.
In the ambulance, she was stabilizing and started to respond well to treatment. But in my mind even as I felt the happiness for her recovery, the worries of her inheriting my curse took a heavy toll.
Gladly later we found out it was not epilepsy but a fever induced seizure. My curse has ended with me.
I wish you all the best, a thousand hugs to your family and with hope everything will get better.
As a retired paramedic, I saw many a child seize. Usually it was febrile in nature and rarely was it from a different cause with the exception of the first (in what I feared would be many) seizure.
Unfortunately, even with all we know, we still “practice medicine”, there are many things we do not know and cannot explain. There are doctors who treat machines and test results and doctors who treat manifestations and mother’s wisdom. They both have their merit, but neither can provide the answers we seek. (I know this from personal experience). I wish there was an easy answer for you and every parent out there suffering similar experiences, but there is not.
I have many friends who have gone through similar circumstances, all with healthy, productive, and grown children. Do not lose hope and follow your instincts. If you want answers before lumbar punctures or other invasive tests, you have the right to demand them.
Hug both your little munchkins and do anything you can, but remember that some things (like you’ve written about) are well out of your control – just breath. I’m hoping this has a very happy ending and that this “living on the edge of a knife” life you have right now is short lived!
I just wanted to say thanks for your words. I read this piece after you tweeted about it and I keep going back to it in my head. You summed up the fear I have as parent so well. Thankfully we haven’t been through as harrowing a time as you and your family have but you never know what’s around the corner. Don’t get me wrong, I’m usually annoyingly positive about everything (trying to high five my wife for 760 fatality free days usually earns me a look) but there’s always that little ‘what if’ in the back eh. I’m glad he’s better and you guys can move on with less stress!
Anyway, thanks for sharing. You do good words 🙂
I was checking out your blog for other reasons and I saw this post, and I want to tell you, when I was a kid (around 10) I had random seizures, and the neurologists were completely at a loss to explain them, because they only happened at night when I was asleep, and I was able to recount everything that happened during them (at first they didn’t believe me my dad confirmed I always yelled a warning, that I pushed my tongue against my teeth so that I knew where it was during the seizures). I had to go through the EEGs and another test where they flashed strobe lights at me after keeping me awake all night, and they still couldn’t come to any conclusions.
Eventually, my neurologist, a very nice man, said he had to qualify it as “epilepsy” only in the most general terms. For several years (this was in the early ’80s) I was on phenobarbital, and later dilantin because the phenobarb made me too drowsy and I was sleeping too much; the dilantin’s side effects were only that it made my gums puffy and grow over my teeth—I had them cut off after high school, which was a weird few hours of periodontal surgery, but that was it. After a few years, though, no seizures—they concluded that I had hit my head on so many objects as a kid (a wrestling mat, the bare earth, the bumper of a ’65 Pontiac) that it seemed those incidences may have been instigating the seizures, but again that was only conjecture—still, the doctors kept me on the dilantin through college, “just in case.” After that, they slowly took me off the pills and that was it, never an explantation for what had happened.
About twenty years later, just out of curiosity, I did some research: where they used to believe there were only two types of seizures (bad and not as bad), now they have many more classifications, and many of those occur ephemerally, like in my case basically there’s a grouping of seizure activity that happens between the ages of 10 and 16, and then the person “grows out of it,” by which I mean literally grows out of it. I mention this not because I’m a doctor or that I’ve had this experience and know so much (which I really don’t), but just to give you some comfort (hopefully) that sometimes it does just go away, though you may be ever watching, and to let you know, like I let my own mother know, because she always worried, that you’re an amazing mom and you should never doubt that, and that your son knows this.
You have said the right thing. Your kid seized and he seized his life and his world.
He seized his chance to live with your help.
I can imagine how painful it is to see the kid in the condition you can not directly affect.
When I was at primary school, I got a hard cold over winter, which has ended up in sugar diabetes type 1 in the end (1994). Not the most pleasant thing to bear 🙂 indeed, but it shows that everything can be gone through.
That followed my birth earlier when one of my lungs did not open properly and was kept in baro camera for a couple of months.
My parents were shocked by the news about diabetes when it came in especially by the fact that doctors said it is not curable. And showing the grim perspectives to the future. And they did a lot to help me to return back to normal life.
My own belief and their love helped me to keep afloat at that point of time.
The doctors are not always in position to find out the root cause and rather tend to fight the consequences.
As a result I am still alive and enjoying your books, despite what the doctors used to say from the very beginning 🙂
I wish your kid great health and even greater achievements.
He has gone through a lot already and he has no other choice but to feel well and have a great time ahead.
You will have a lot of sunny days with him together covered in love and that story that had happen would fade a way and be a past experience strengthening his steps into the future.
Replaced by his college achievements, his hobbies and lots of sunrises and dawns together 🙂 waiting ahead
My son was 12 days old when he projectile vomited all over me then preceded to scream and scream. As first time parents we took him to the nearest emergency room where they recorded a 105 degree fever. The ER doctor decided to administer a spinal tap/lumbar puncture to check for spinal meningitis.. Even today I can only describe his screams as a howl from beyond when the doctor missed…twice. He was about to make a third attempt when I and an orderly put an end to it. Mom and son had a quick trip by ambulance to the children’s hospital. After a week stay and countless tests we returned home. Never discovered what was wrong. The ER botched the urine samples and shot him full of antibiotics which skewered the results for the first 24 hours. He turns three soon. I still check on him through out the night to make sure all is well. Forever paranoid but in a good way.
Thank you for sharing and best wishes to all of you.
I’m really sorry to hear that you went through that. I hope your son stays healthy and never goes through that again, and that you as a mother don’t either.