An Anniversary

Fifth anniversaries are big. It takes effort to ignore them. They await, or they loom. It depends on what you're celebrating. Or mourning. 

Lucas returns to karate class; two weeks off, thanks to Thanksgiving. I'm not sure what he'll do; somedays he approaches the class with the solemnity of a Shaolin monk, others with the flightiness of, well, a five year old. No giggles and grabass upon his return - he is all steely-eyed focus, snapping off his kicks and punches, his ki-yaps coming from someplace much older. He is rewarded for his efforts: two additional stripes on his orange belt, two steps closer to testing for his next belt. 

Five years ago, this week. It started on a Thursday, when it looked like Lucas was getting a cold. Not unusual – he was, after all, a ten-month old boy, a living breathing Petri dish. By Friday, he “felt a little warm.” Saturday morning my wife Beth and I woke to find our little boy with a hacking cough, a raging fever, and...how do I describe this? His eyes were a bright, burning red, the whites all but devoured by that scarlet hue, looking like something out of a Stephen King novel. His lips - cracked, puffy, and bleeding, like he'd been crawling in the desert for days. I felt a slow, creeping panic coming on - we gave him his sippy cup with water and called the hospital, who told us to bring him in to a local Urgent Care center later on that evening. When we got to the doctor's, they told us they thought it was a virus, which in Doctorspeak means “we haven’t the slightest fucking idea what’s wrong with your kid”. They told us to keep giving him fluids and Motrin, and to go see our pediatrician on Monday.

So it continues on Sunday, the fever, the cough, the red eyes, the crying (his and ours), lack of sleep (ditto). Monday we take Lucas to our pediatrician, who gives him an antibiotic - she still thinks it’s a virus, and that the red eyes and the bloody lips are due to dehydration and fever, “not uncommon”, she told us (in the Doctorspeak Dictionary, the entry for “not uncommon” reads “see Virus”) - and drops the first hint that this may be something else, something called Kawasaki Disease, which sounded to me like the punch line to a bad joke or a marketing slogan. She asks us if we’ve ever heard of it; of course we haven’t. She tells us not to worry, that this particular disease is extremely rare; perhaps 1 in 5000 kids contracts it. Of course I’m not worried. And yet my gut tightens, and there’s a noise in my head like the rumble of a fulminating, angry sea. 

I’m at my desk Tuesday morning, and the cell phone rings - it's Beth, she's crying, I can hear Lucas moaning (dear God, this is like nothing I've heard before, and I'm suddenly so terrified I want to vomit), and I dial my boss' extension even before I'm off the phone with my wife. I'm as calm as I can be, letting my boss know that we need to take our kid to the ER, and then I'm out the door. Running. Cursing. Fists and teeth clenched. Fear and rage – they’re the same to me. I’m an arachnophobe, terrified of any terrestrial critter with eight legs. When I see a spider, I don’t just kill it - I destroy it, pounding it to a black pulp with whatever weapon is handy, shaking with rage and “goddammotherfucker”-ing it the whole time. Driving home from the office, I lose it. Fear and rage. The tired engine on my ten-year-old piece of shit Ford Ranger is screaming, as am I – at the fucking stoplights that refuse to change, at the leisurely Sunday Driver assholes who are deliberately getting in my way, at my truck for being so goddamn slow – and speaking of God, oh, I have a few choice words for Him as well. Fuck you, God, for doing this to my child, my little boy. Fuck. You.

We break out the Christmas trappings: three large plastic tubs containing ornaments, baubles, trinkets, and other festive accoutrements. Lucas pulls out our menorah and asked "Is the...uh, lenora?... a Christmas decoration?" 

Five years ago: we arrive at the hospital and the nurses check us in. As they poke and prod Lucas, checking his vitals, there's that name again - Kawasaki, Kawasaki, Kawasaki. It's all I hear, even though the staff bombards Beth and me with questions. A young doctor comes in at one point – I can’t remember when, time has become one long agonizing moment - he tells us all about Kawasaki Disease, and says that Lucas' symptoms are indicative. The bloody lips, the crimson eyes (because red really doesn’t do this particular shade justice; his eyes are so vibrantly colored that they’re almost beautiful), the fever, and now there’s a rash to boot. He recognizes these symptoms because he is on a research team that is working on Kawasaki Disease, a team that has developed a treatment. His boss, who happens to work at this hospital, is one of the nation's leading experts on this bizarre, rare, almost certainly lethal disease.  The young doctor keeps talking, and I’m only hearing patches of what he’s saying – “blood vessels will become inflamed…aneurysms…heart failure…” – because there’s a roar in my head, a roar that surely sounds like the legendary Maelstrom. Everything else comes in fragments. My little son is subject to a series of tests - he's stuck with needles, has plastic swabs stuck up his nose causing it to bleed, thermometers and swabs are stuck up his rectum. The whole time he's crying, but it's a weak, tired cry. A whimper. And somehow that makes it worse. I want to break something, anything. At some point the doctor tells us about the treatment, and we're told that we'll be at the hospital for at least three days. The treatment is usually (and I don't want to hear "usually", I want to hear "always") successful and we should (will?) see a near immediate change in his eyes and lips. He'll need an electrocardiogram to make sure that there is no damage to his heart - a comment that causes my own heart to momentarily freeze. Ever hear about the high school athletes who without warning keel over and drop dead in the middle of a basketball or football game? The doctor tells me that in such cases, there was a high probability that they had Kawasaki Disease and weren't diagnosed or treated properly (and not for the first time, I think about the sheer luck of it all; that we happened upon doctors who are experts in treating a disease that most of their peers know nothing about. It’s a comforting and terrifying thought). For that he will need to be sedated and again I have to force myself to keep control - sedating my 9 month old is not something I ever wanted to have to deal with. We're led up to our room. There are things going on around me that I have to consciously screen out. I see a little boy, maybe four years old, being pulled around by his dad in a little Radio Flyer wagon. He is hooked up to an IV and he is missing large patches of his hair. All of this is drawn out over a span of hours, and I still have no sense of time passing. At some point Beth goes home to get some extra clothes and bathroom stuff. Lucas gets his IV and they start with the standard saline mix to keep him hydrated. He struggles with the needle in his arm - the nurses have it taped and wrapped, his hand is in a splint, and there's a cotton sock over it that he keeps trying to pull off. The nurses come and go, constantly checking his vitals. He is lying in his metal crib, looking at me with so many questions in his eyes. Questions that I can't even begin to answer.

We're driving home from a shopping trip and talking about sports. He's rattling off a list of the ones he wants to play - soccer, rugby, basketball, hockey. "You played hockey, right, Dad?" "Yeah, a little, when I was a teenager", I reply. "I don't know about hockey, Lucas - it's expensive, and there's only one place around here to play, and that's kind of far, in La Jolla..." Pause. Then: "Ok, what's that other one, with the sticks but it's on the grass?" "Lacrosse", I reply. "That one, then", he says, matter-of-factly.

Five years ago: the treatment for Kawasaki Disease is a long and quiet process. There's nothing for us to do but wait and worry. One more sleepless night passes; morning rolls around. And brings this: his fever is gone, and his eyes are almost clear - that horrific red that engulfed his eyes has receded. Even his lips look better, as if he'd gotten some of God's personal stash of Chapstick. The doctor tells us that the EKG will be an easy, straightforward procedure. I make the decision to go back to work that afternoon. I'm feeling a good amount of guilt over leaving Beth at the hospital with Lucas, even if it's only for a short while. But the doctors are pleased with the way the treatment went. It's an excellent sign that Lucas has beaten this disease. And the cold reality is that I just started my job a week ago, and I need to show my face in the office.

I'm at work for about a half hour, and am sitting in my boss' office discussing where we are with our job openings when the cell phone rings. It's Beth. She's crying, telling me between sobs that I need to get to the hospital. Lucas is screaming in the background, a sound of pure terror and agony. Something has gone wrong, terribly wrong.

In minutes I’m on the road. This time I'm in our new SUV. And it hauls ass – the engine’s screams match the ones in my head as I break several laws in an effort to get back to the hospital. I’ve got one white-knuckled hand on the wheel; the other is pressing my cell phone into the side of my head. Beth is telling me what happened: the sedative wore off about a half hour earlier than it was supposed to, and Lucas woke up shrieking and thrashing around uncontrollably. Beth describes him as acting like a heroin addict going through a bad withdrawal. Making things worse, the dayshift nurse was snippy with Beth, telling her that this was "normal". Normal. I’ve reached the point of near incoherence; I’m adrift in a sea of helpless fury and despair, and Normal is a distant, unreachable shore. When I get to the hospital room he is still crying and struggling in her arms. I take him into mine, and he eventually dozes off. 

We catch a break. The doctor tells us that things look positive; the thing with KD is that it's like chicken pox; once caught, and treated, it never comes back. What to worry about: the lingering effects on the heart and circulatory system. This is Doctorspeak for “one day - perhaps on his birthday, or on his first trip to Disneyland, or when the two of you are playing catch in the backyard - your son’s heart may suddenly stop beating, or one of his major arteries may burst.” We won't know more until we get the EKG results back later on in the evening, but I'm “cautiously optimistic”. That’s Jasonspeak for “I don’t quit on my son. Ever.”

He shuffles out of class, and I recognize that gait: it's the slow stride of the condemned. "Dead man walkin'!", I think, and I know I shouldn't smile, so I stifle it. I've had a lot of practice doing this - last night, he was goofing off in the living room, I was hunched over the computer, and I heard him yell "OW! I HURT MY NUTS!" Yes, a five year old yelling about his nuts is funny, but he doesn't need to know that just yet. He walks up to me. "I got a Yellow." A Yellow - the teacher's code for Minor Trouble In Class. "Why", I ask - more of a statement than a question. "Um...I was being loud and bothering people because everyone is excited for Christmas." An admission of guilt served up with a thin excuse. The kid's growing up. Later on that afternoon he will write an apologetic note to his teacher, and after that, he'll play cars with his little sister.

We eventually learn that the EKG shows that Lucas' left ventricle, in his heart, is dilated. It's too early to draw any conclusions. The good news is that the treatment seemed to work, and the virus is gone. We'll be taking Lucas home. As we prepare to leave the hospital, the staff that had worked on Lucas comes in and marvels at him, as do Beth and I - the kid is climbing, crawling, babbling, a far cry from the fever-ravaged state he’d been in for the past few days. After a time, the outprocessing is finished; we scoop up our resurgent little boy and left. As we walk through the lobby towards the exit, I see a glass case, with a large book on display inside. The book is called the Book of Remembrance, and its pages contain the names of the kids who didn't get to go home with their parents. It's a thick book, hundreds and hundreds of pages long, a tome of dead children. I gaze at it briefly, then I look back at my son, and in that moment I feel like a drowning man who’s just broken the surface and taken his first breath of air.

"Wow", Beth says to me the other day. "You realize it's been five years? He was 9 months old." I sit down and pull up the blog and dig through the archives. The post - that post, we used to call it - was dated 12/09/2004. Loud noises blast from the living room, a cartoon Wolverine tearing apart a giant robot with his adamantium claws, and a five year old boy doing his best imitation of said X-Man. "You're right", I say. "Seems so long ago. I'd almost forgotten."