Down syndrome · family · Findlay

Finn’s Eyes

brushfieldIt’s said the first person to live to two hundred is alive today, the wonder of science and this constant clambor for the New Methuselah. Why you’d want that kind of misery, I don’t know, but I’m just happy that my son has a new life expectancy, that the triplicate 21st chromosome doesn’t mean he’ll be living an antediluvian life-span before having his forever exeunt.

He’ll have eyes open sixty years at least, with eyes that are beautiful.

The nurse first noticed his eyes, his eyes being first notice. Awake and watchful in the recovery room, his orbits were wells of blue constellated by circles of concentric and white spots. Brushfield markers, cholesterol scars ringing his turquoise irises. It is the inheritance of his diagnosis, to have his eyes tattooed in quartz, like the face of an iridium watch.

And his pupil in the middle a wide and expanding thing, to take in the world while the stars keep watch over the incoming light. His eyes are the universe contracted, the necessary beauty of a confused chromosome, and Findlay, what do you see? When the images pass through these cerulean gates and before they hit the brain, these irises fantastic?

It’s said the first person to live to two hundred already walks the earth, but the immeasurable and infinite already exists beneath blond lashes, and when Finn sleeps, almond-eyed and innocent, the universe, too, sleeps.

Down syndrome · family · favorites · Findlay · parenting · surgery

Rachmaninoff Hands

rach handsThe surgeon who fixed Finn’s heart had Pygmalion hands, well scrubbed and seemingly cast of marble. Hands you’d want to see in a surgeon, with long fingers, tapered at each knuckle, nails buffed and professionally rounded.

These are hands you’d allow into your child, because—as the surgeon explained a day prior to procedure—this surgery necessitates a cracked chest-bone and exposed viscera. So far as infants are concerned, the heart rests close to the spine, a fact you realize once the rib cage is open like a grotesque and calcified blossom. The heart beats slow and sedated while awaiting the scalpel.

You’d like ‘nimble’ to be a resident fact on the doctor’s CV.

This isn’t like junior high when you’re slicing into frog alimentaries with a dull X-acto and making off-color jokes with your tablemates.


Finn’s surgeon could have passed for a Bond villain. I say this approvingly. He sported a Vanderbilt haircut; a Slovakian name; hands you could envision, within a different context, cinematically threading a silencer onto the barrel of gun. No apparent emotion, his only obvious proclivities being a surgical precision of language and a double-starch of the lapels.

You want an assassin when it comes to life and death. Assassins have good trigger-control.

“It vill be fine,” he held up palms. I thought of Rachmaninoff, who himself had long and expressive hands, the result, perhaps, of acromegaly: a genetic defect of human growth hormone. Genetic defects had been on my mind for the last three months. Finn was diagnosed with Down Syndrome shortly after birth.

The surgeon was either unerringly decaffeinated, else a Batman-type who maybe woke early everyday, breakfasting on half a grapefruit sprinkled with cinnamon; a neat and measured demitasse of espresso; and a plain hard-boiled egg. He was a man who had control of his faculties, who would maybe finish his evening with ten sets of rowing exercises in a cedar-lined room before retiring cross-armed to a mattress. He wore no ring on any of his impressive digits.

Me, on the other hand—I have dumb and stubby fingers. On the day Findlay was born, I sat in a fluorescent-lit hallway, too early, fumbling a Nikon camera and checking the light registers by taking pictures of the ‘Exit’ sign.200px-Old_exit_signI was in the hallway because hospitals sometimes make dads tourists in the birthing process, especially when C-sections are involved. The hospital either aids else emasculates Dad by curtaining him off from his wife before she’s cut open. Both my kids were born this way. I’ve therefore seen my fair share of hallways and surgical drapes, spent much time twiddling my clumsy thumbs.

‘You can’t handle this. Go sit for a spell.’ Take the pictures, cut the cord, be the et cetera, just don’t be here to hold any hands. We’re literally going to remove your wife’s insides for a minute and set them atop her chest.

<Click> ‘Exit.’

I can actually handle these things, just like I could’ve held the surgeon’s hand while he knived tissue from my son’s pericardium to later sew into his heart. I can, I could’ve. These are heart and gut things, and I specialize in heart and gut things. I’m still bad with a camera, though.


The obstetrician who delivered my son had massive hands, a celestial exaggeration of his calling: a guy engineered to pull life into the world on the regular. The backs of his hands were neatly haired, fingers smoothed by pumice and iodine, still masculine despite their polish.

When he lifted my son into the world, he held a red-haired, flap-eared raisin up for review, and my initial and guilty thought was that Findlay was not as beautiful as Cayden upon leaving the uterus.

The obstetrician was triumphant, hands clasped around Finn’s waist and the baby was passed to robotic attendants who were eager to wrap Findlay’s frog-belly into swaddles.

“Dad—come here for pictures!” And I cut Findlay’s cord like I hadn’t with my eldest son, Cayden. The nurses had me fake cut it a second time because the first picture came out blurry.

“Why isn’t Dad cutting the cord?” cuttingcord attendants had asked five years prior, and from behind surgical masks. With their mouths covered, you could only see the nurses’ raised eyebrows. There was a table lined with blue huck cloth and neatly autoclaved steel, but goddamn if the only instrument they cared about was the camera. How you complete memories with the only unsterilized gadget in the room.

My hands were busy holding my wife’s hair in a bundle. She was puking into a plastic depository, and my hands were better deployed holding her sweaty ponytail, while the surgeon re-threaded her fascia and peritoneum back together with God-knows-how-large a needle.

“Guess, Dad’s not cutting the cord,” the nurses shrugged, while my wife retched for a second anesthesia-induced time.

Fast-forward five years and Findlay’s obstetrician, triumphant, hadn’t noticed that he’d just delivered a baby informed with excess, noadisjunct chromosomes. Essentially: Trisomy-21, in a womb-soggy, redheaded vehicle. Findlay had these constellated eyes that still and stubbornly remain Sinatra blue. They were open.

The OBGYN passed off Finn to the attendants without remark. It was akin to having just delivered a unicorn while deeming it a horse.

Children with Down Syndrome often have Brushfield spots,down-syndrome-ppt-for-ugs-22-638 these stars that ring the iris. It’s a trick of the tissue, something buried deep in the 21st chromosome, and it’s a tell–an obvious one. Kids don’t usually have galaxies for eyes before getting their first astronomy book.

Obstetricians aren’t palm-readers, either, nor do they always look deep into infants’ eye upon birth. Doctors have flesh to sew, which is a real and corporeal thing, especially when narrowly looking through the fenestrated window of a surgical cloth. There’s the room full of bustle and the next appointment to consider.

Also, the lights in the OR are bright. They don’t always reveal the miracle of birth or its sometimes accidents. I’m sure the lights better highlight the work left to do, the reds and yellows of things left to close, the blue nitrile gloves and the Betadine-swabbed torsos. I figure the obvious is most likely ignored when urgency takes precedence and the attendant nurse hands you a stainless-steel tray of sharp things.

“He’s healthy! It’s a boy!” There’s the declaration, but then the obstetrician has to duck back down, thread a needle, and remember the stitch-loops he’s practiced on apple-skins back in med-school (form a bight in the end of the line, and tie an overhand knot, form a bight in the end of the line and tie an overhand knot…).applestitch

These things we do with our hands.

We generally always see the backs of our hands, never our palms, when working. Unless, of course, we’re juggling. But juggling is a trick, and work is not. Palm-reading is also a trick, but as mentioned, doctors aren’t palm readers.

When a doctor delivers a baby by C-section, the doctor’s thumb is perhaps the first thing the baby grips. The baby wraps his hand around any of the doctor’s available fingers, and hides his palm by enfolding it around the digits that delivered him.

The OBGYN didn’t see Finn’s eyes, or Finn’s single palmar crease when delivering my son. Finn, like a good blackjack player, hid his ‘21’ when holding the doctor’s thumb.

‘Always hide your hand,’ is the advice.

Finn, apparently, knew as much in the womb. The single palmar crease, like the constellated and almond eyes, is an obvious tell that a newborn has Down Syndrome. It wasn’t until the Recovery Room that these things were noticed. The attendants there were better palm-readers.singlepalmarcrease

As far as fortune-telling goes, Finn’s diagnosis came with its predictions, less psychic than scientific.

“He’ll most likely have a heart defect.”

“He’ll most likely need surgery.”

“His heart will most likely be ok.”

At the hospital, days before scrubbing in, they show you a plastic doll with a multitude of wires trailing from its pretend heart-space. It’s a mock-up so that you’re prepared to see your baby hooked up to as many, if not more, cords and filaments and sensors immediately following surgery.

The sight is enough to make your own heart feel suspended by wire, cruelly commandeered by some unseen marionettist.

Finn’s cardiac surgeon, our man with the Rachmaninoff fingers and heavy accent, explained the procedure one day before surgery. He was clinical, matter-of-fact without somehow sounding clip or cold. His voice had right angles; his hands, however, posed as they were in various ways to demonstrate Finn’s heart and how it was to be fixed, had softness to them. heartmodelI imagined the surgeon cupping Finn’s heart as if it were a newly feathered thing, a fallen sparrow, a creature to be gently returned to its proper nest.

The plastic doll had my wife and I in tears; the surgeon’s pantomime of Finn’s heart, to what nest it would be returned, had us dry our tears just as quickly. There is comfort to be taken when gestures alone conjure confidence, when panic is disappeared through a particular and subtle kinesic. The surgeon, for lack of a better term, presented as suddenly and consolingly able.

When Finn’s gurney was hurried down the hallway following surgery, there was a coterie of nurses running alongside the rig like a team of gowned Secret Service agents. Four sets of hands on the transportable bed, more steadying the rack of wires, the swinging bladders of dextrose and lactated Ringers. All ran in soft shoes, their orthopedics still covered in surgical slip-covers. It was a near silent 100-meter dash from OR to ICU. I leapt up from the waiting room couch in order to join the controlled footrace. The surgeon followed the gurney at a moderate distance, his surgical mask removed and dangling loosely like an awry runner’s bib. I searched the nurses’ faces for sign of an outcome, for assurance that our quickstep down the corridor was one of expedience and not urgency. They, however, were a hive of back and forth buzzing, a language of numbers and stats fluently exchanged. Any edgewise word would’ve seemed an interruption, though I am the father.

“How is he? How is he?”

The surgical rig disappears through a series of automatic swinging doors, my son and his zipped up chest, closed eyes, and fortune-foretelling palms swallowed up by a secondary corridor.hosp

“How is he?” I turn lastly toward the surgeon, and he barely looks my direction. He says simply, “It vent vell.” Despite having emerged from surgery where the lights were undoubtedly intense and the minutiae of needles and scalpels as stressful, say, as choosing whether or not to cut the red wire—maybe the blue—the surgeon was nonplussed and devoid of sweat.

“He is fine,” and the surgeon, too, disappeared into the corridor leaving me for the second time in three months, the father at bay, staring blankly at a hospital exit sign.


I looked down at my hands and spread wide my fingers. Rachmaninoff could play C E♭ G C G with his left hand alone. I could maybe duplicate that feat with both hands together, but—as they were—my hands were slightly trembling, and unfit for piano keys let alone otherwise surgical poetries. I curled my fingers into my palms, exhaled mightily, then turned back toward the waiting room.




The Recovery Room has natural light by means of a large plate-glass window. Though it overlooks the parking structure, the windowed room is welcome respite from the fluorescent halls, the dimly-lit waiting areas, and labyrinthian stairwells.

Findlay lies in his bed, less the marionette than his post-op and ersatz Pinocchio. There are only a few wires still attached, sensors which inform the technician how Finn’s heart is performing beneath all the stitches and an already-knitting breastbone.

Finn smiles—smiles!—atop his sheets, and wraps his hand around my extended finger. He’s effectively hiding that palmar crease again, the one line that divides his hand neatly. My hand has the usual two. The irony, though, of him having an extra chromosome means his body is sometimes made simpler: fewer lines, smoother eyes, an inexact heart. All these things used to scare me. I adore complication, after all. It’s maybe why Finn hid the fact of himself for nine months in the womb, why he escaped detection in the delivery room. Why he held his hand tight close to his chest.

I smile down at him. The surgeon appears in the doorway. Two days out of surgery, and the doctor doesn’t even enter the room anymore. He simply stands in the doorframe, waves and nods, before walking quietly away. His work is done.

Findlay continues to hold my fingers, my clumsy but suddenly capable fingers, and my work is just beginning.


Down syndrome · job · penguins · people

Palomino Penguins and the Extra Chromosome

I was feeding the penguins yesterday—the Magellanics who live outside and receive San Diego sun—and Yoshi was giving me issue.
Yoshi has patchy feathering, which is fine and normal. Some of us have alopecia, some of us get bald spots.
I call Yoshi my ‘palomino penguin.’ She is by accident spotted, and she’s like a gorgeous horse, but with a fussy appetite.
The gulls were posed in vultrine fashion, eyeing my bucket and looking for any ANY dropped fish.
Yoshi—she is a unicorn, something special.
I fed her a fish, apparently the WRONG one, because she flung it over her shoulder in distaste.
A gull swooped in, grabbed the fish off the rockwork, and then, like, nineteen gulls swept in, feathers all stupid and fighting over the scraps.
“Dammit, Yoshi,” I patted her on the head and shook her bill, “You let the terrorists WIN!”
There were a few guests watching as I fed the birds, and I said, “Hello.”
I caught eyes with a gentleman who was there with his wife and son? Grandson?
The kid had an earbud with a trailing cord, thick specs, and a red baseball cap.
The kid also had an extra chromosome.
I shouted from my perch while feeding beaks, “Hello, Sir!” And, pointing, “I, too, have an angel.”
This while the seagulls fought displaying their feathers.

Down syndrome · Findlay

Bing Bong

We’re at the San Diego Safari Park today, and there’s a playground south of Condor Ridge and near to the tigers where Cayde insists on having a break from all the walking. Finn is liberated from the stroller while still wearing a knee-length insulated jacket; he’s dancing around encumbered but happy, hands occasionally lost in the sleeves. He finds a corner of the playground where a circle of girls has formed, cousins by the look of it, with one tweeny and pony-tailed ringleader entertaining the lot by singing the ‘Bing Bong’ song from ‘Inside-Out’. They’re all shouting along to the chorus while beneath the playground slide, and it’s charming. There’s maybe ten of them altogether. Finn takes notice and sits down, then sidles up to the outside of the circle by scooting on his backside. Finally, he announces himself by tapping one of the cousins on the shoulder, all the while bouncing in his seat and wielding that big gap-some grin of his. He’s loving the sing-along. He wishes to say hello and join in. The cousin’s maybe seven. She sneers at Finn and recoils–she actually retreats with a look of shock and points. I can’t hear her, but her mouth forms an ‘Eeew.’ She scrambles away, climbing up and over all the other collected girls in a move to get away; Finn just waves. It’s heart-breaking and it’s the first time I’ve seen anyone react to Finn this way, adult or child, and though I’ve expected it, been aware of eyes, usually a surmisal of Finn has been met with a smile–sometimes unnecessarily sympathetic, sometimes acknowledging. I scoop up Finn, mostly to save the cousin from further and needless recoil, and the girls continue to sing: “Who’s the best in every way, and wants this song to say…” Finn laughs and echoes the chorus while I carry him away, “Bing Bong!” because he knows the words, too.

Down syndrome · job · penguins · people


The New Guy is not a new guy, in the sense that he’s done this line of work before–raising penguins that is—which is certainly a strange thing for anyone to have on their resume. New Guy has a decade and a half on me, having raised some of the birds I now give geriatric medications to, back when the penguins were in quarantine and freshly arrived from Cape Crozier; before my arrival, even, into the world. NG is cantankerous to a fault, though he also has a penchant for tossing around rattle-throated niceties on the regular.

Me: Thanks for helping me with that.
NG: Hey–anything for a pal. I’d take a bullet in the head for you.

Me: What’s up, friend?
NG: Aloha, mi simpatico!

(Which is the sort of mashed-up patois that makes NG him).

For lunch, he invariably has yogurt, a piece of fruit, and a cigarette.

NG: I’m gonna go smoke in the ‘Sitting Section’ now.


NG: Well, off to the Leper Colony.

He smokes cheap tobacco while reading the news on his phone. We confer often on’s recent offerings, else what is published on The Daily Beast, Slate, Atlantic, Alternet. He eschews social media but is savvy to the left-leaning politico blogs. We both have grey hair and progressive tendencies, why I’m his chosen simpatico. The guy knows his Sanders; he also know his music, and we relate about—maybe—that Kate Bush song which just came on the radio (The ‘Hounds of Love’ being his Desert Island disc), or The Waterboys’ ‘Life of Sundays.’ His ears prick when there are certain mechanical resonations in the building.

“Hear that? That’s the first three notes of ‘Love Cats.’ Y’know: that Cure song.”

The other day, we were leaving work, and he was singing a ‘Jim Carroll Band’ tune, ‘singing’ being the chosen misnomer for reciting tunelessly: “Those were the people who died, died/ Those were the people who died/ All my friends/ They died.’

“Hey! I love Jim Carroll” I say, punching him on the shoulder. “Didja ever see ‘Basketball Diaries’?

NG was shouldering a khaki backpack and holding an almost pitiable cupcake in his hands. He was off to see his new friend, this elderly woman who, by his definition, walks around like a ‘fucking upside-down ‘J’. He had found her toppled over on the street the other week, walker awry, and with a goose egg forming on her head.
NG: “She was on the sidewalk and everyone was gathered round not doing a goddamn thing. She was saying, ‘Help me up’ so I just helped her up.” NG shrugs at this point in the narrative.

He helped her up, and drove her to the nursing home down the block where, by her estimation, the people running the joint are assholes—them and her goddamn son. No one allows her to smoke despite her at least seven and fiercely independent decades on the planet. Her husband’s already in ashes—why not allow her to ash on these latter and last days, when she’s in a neck brace after back surgery and also a bump-headed curiosity on the sidewalk.

New Guy and her have a pact and sneak smokes in the stairwell. She doesn’t talk much, by his report. But he brings her chocolate and cigarettes, and much-needed company, certainly.

“I liked Basketball Diaries. Think I read the book, too.”

I’m usually the guy who champions the book over the movie, but I admit to not reading the novel; me and NG chat about DeCaprio films and how I prefer his earlier work.

I dunno,” NG drawls, “I’ve never been disappointed too much by recent.”

“Loved Basketball Diaries, and the one where he’s Rimbaud. He grew a jaw, and then I didn’t like his films so much.”

He interjects: “Oh-but then there was that Gilbert Grape crap.”

“I love Gilbert Grape! He was great in that!”

And NG is holding that cupcake and poised to exit work, and I like leaving work with him so we can exchange parting remarks about the RNC and bitch about the middling mammal that is Trump’s hair, as well the lower-echelon crustacean which certainly owns Trump’s brain-stem. We have this thing.

NG owns a truck with Hawaii plates, windows always cranked open to air out the upholstery, I suppose; and before walking out to our respective cars, he voices:

“Gilbert Grape. Proof that any actor can play a ‘TARD.”

A co-worker in the room cackled immediately. “Right?” she encouraged. “So true!”

I considered bristling.

The night before, and in company of a family who also parent a child with Down Syndrome, we discussed the ‘R’ word.

“I can handle ‘retarded,’ was the shrug, ‘Just not retard.’ There being a difference between a watered-down adjective and the direct epithet.

I used to do a great Corky impression years ago. A party trick, when ‘Life Goes On’ was on TV. I would say, smirkedly, after rolling out full-Corky: “I’m going to be cursed with a Down’s kid,” never realizing how awful I was with such tongue-rooted insensitivity, my failed language, the fact that I would have a child with Down Syndrome, and that it would ultimately be so much more a blessing than a curse. I was foolish.

I was a dick.

(Me and the New Guy have grey hair. We are old, him more than me).

‘Tard,” he said. I didn’t correct him, or my co-worker exactly. I’m only corrected by virtue of my own situation, and what I’ve learned in first-person. The words bother me, but I can’t legitimately re-shape anyone else’s lips.

I said: “Please mind my Son.” The only thing I could say. It was not a reprimand, but NG ceased talking, and the laughing stopped.

Me and the NG walked out together and he was still holding the cupcake for his new friend, the broken lady; we were still simpatico. He confessed he was socially retarded. I was convinced he was correct—I didn’t like how he said it at all–but let it be and patted his shoulder good-bye while he left to go give an old lady a pastry while I left to pick up my kid, there ultimately being some kinduv kindness.

Cayden · Down syndrome · favorites · Findlay · home · parenting


My son Cayden suggests an experiment. He has two vials of water, one smaller than the other. They are capped neatly.

“I’m gonna put these in the freezer. Which one will freeze first, Daddy?” I give him the correct answer. I say something about volume. Thirty minutes and one game of Battleship later, I’m right.

On to the next experiment.

“But which one will THAW faster, Daddy?” and Cayden runs out the door to place same-said vials in the sun, on the outdoors and lattice-work table, which, by virtue of the drought more than anything else, has resisted rust.

It’s sunny out, so remains my disposition. Cayden sets the kitchen timer. We put Battleship away and wait.

I woke up earlier in the morning with Finn singing. He does this. He doesn’t have words yet–his Down Syndrome having him still pre-speech–but he matches syllables to his own manner of sounds. If I say: ‘Findlay Cooper’ in my made-up brogue, he’ll repeat, ‘Dum-dee-da-da.’ It’s a comfortable echolalia and something nice to hear, even better to wake up to. Finn sings and he talks. In a room of excited peoples, he’ll gesticulate like mad mimicking all the things we do when talking to each other.

One time I told him I didn’t want him.

I don’t like to admit it, but it’s true. There is anger and there is grief, also words accidentally freed from icebergs.

In Cayden’s room we play guitar. The vials are out in the sun and Cayde is explaining magnets to me. I’m cross-legged on the floor with my friend’s Mitchell. Finn, meanwhile, has planted his hand firmly on the fretboard so my C#m is muted. I’m playing the song ‘Where is My Mind?’, which is appropriate because I’m due for both the doctor and a refill. Cayde momentarily pays attention to the music lesson, so we take a minute to figure out the lead guitar bit on the Playskool xylophone.

“Cayde: just do blue to green for four counts, then four on orange to yellow. Dude—it’s an easy part. Think The Ramones.”

Cayden knows The Ramones. He gets it finally, and he taps a yellow mallet on blue and green in time with my strumming. Finn decides to let go of the Mitchell’s neck and air-guitars his own song while bouncing at the knees. He turns in a circle and sings exactly eight syllables.

We make music.

Meanwhile, I’ve forgotten how to play guitar. Passing in between songs, some that I’ve written and most I have not (and all the while Finn dancing) I land on a forgotten chord: the D minor. Three fingers in the same array as if you were pitching a curve ball. I think so, at least. I’ve forgotten how to pitch, too, with my beard now graying, and it having been a long time since Little League. Currently it’s Cayde who fits my old baseball tees.

(The Beatles ‘I Want You’ starts on a D-min).

Cayde breaks up the party because the kitchen timer is going off. He darts away, then returns with his experiment in hand.

“Look, Daddy—they both thawed out.”

childhood · Down syndrome · Findlay

Goldfish, please.

Because I’ve only recently learned my manners, I say ‘Hello–good to see you, Mae,” to the parking lot attendant at Rady’s. (It’s only been the past few years that I’ve started introducing myself to people I see on the regular).

“Good to see you too, Sweetheart.” She smiles, hands me my parking pass, and leans through the driver’s side window and smiles to Finn. “Hi, Baby. Hi!”

Finn does a tired wave, and blows a kiss. He’s learned his manners, and well before me.

We’re both a little tired. Par for the course. At Speech,Miss Stephanie asks me about Finn’s progress, and I don’t have a lot to say, though Finn’s doing rather well.

She tells me to work on putting signs together. I joke that “Crackers, please” is a fair constant.

Finn toddles around and plays with all the toys, the rubber frogs and turtles scattered about the gym mats. He hugs his friend Logan, and then me. He stops to suck his thumb.

We have singing time, always followed by snack-time: Goldfish crackers and raisins and cereal without fail. All the kids have troubles staying in their chairs and all of us parents are laughing. Miss Stephanie reminds me about Finn’s homework, and about strategizing to combine signs. She’s holding open a ‘Wheels on the Bus’ book in the meantime.

“Finn!” she says. “Where’s the doggy? Where’s the doggy in the picture?”

Finn signs: “Tired.” (Me, too). Then he waves ‘Bye’, rubs his hands together signaling ‘fish’. He taps his elbow: ‘Cracker.’

And then puts a thumb back into his mouth. Music Time is over; now Goldfishes, please.

Gonna call that a sentence.

Mae says ‘good-bye’ on the way out and we don’t pay.

childhood · Dad 2.0 · Down syndrome · family · favorites · parenting

Object Permanence

The ‘Mongoloid’ card gets played despite ground rules and—across the table—my wife Jenn and I meet glances. Finn’s asleep in Jenn’s lap, thumb resolutely in mouth.
In slumber, Finn’s almond eyes close along sinuous lines; the seams of his lids resemble ‘tildes’, those accent marks that give flourish to Latin ‘n’s: tildes make ‘en-ye’s’ out of ‘n’s. Finn’s eyes are different, as is he, and: do we call this exotic?
When the ‘Mongoloid’ card is played—we are playing ‘Cards Against Humanity’, something I’m suddenly regretting—I feel a particular blunting. The table is still friendly, and this is Christmas Eve, but I turn to my friend John-Paul who’s sitting next to me and say: ‘I think I’m done.’ The ‘Mongoloid’ mention has its certain hurt.
John and I are sharing a barrel-aged stout, something fourteen points, so me saying ‘done’ is appropriately camouflaged by a near-finished pint. I could be done by nature of what I’m imbibing, but that’s not why I quietly say ‘uncle.’(Since we’re talking numbers and points, Finn has 47 chromosomes, not the usual 46. The 21st chromosome was doubled somewhere in the early and meiotic phase; it turned Finn’s eyes almond and troubled his heart so that it needed surgering three months following his introduction into the world).
Another hand is dealt, and with my son sleeping—a slur having just been played and re-shuffled with Finn deep in Nod—I tell John-Paul that ‘I’m just gonna amuse myself, here.’ I’m uncomfortable. Finn sleeps. He has an arced palate and a lazy tongue by nature of his diagnosis—something biological. Lazier tongues, without diagnosis, have asked me: “Is he retarded?” A normal and relatively shallow palate should better lock a tongue into place, but it’s not always the case. People say things, coin questionable terms. And: ‘Mongoloid’ is a word that’s shocking to see still in circulation.
Wait—why am I playing this game?
The game asks that I play two associative cards. I lay down: ‘Heaven.’ ‘Object Permanence.’
I’m amusing myself. The point of this game is to play despicable cards when given a prompt—to be as devilishly clever as possible. I start playing cards to not win. ‘Heaven, object permanence.’ On a pizza sauce-stained tablecloth, and where the ‘Mongoloid’ card receives a laugh, my combo fails to even get a chuckle. But I’m happier for it.
Then, it’s Christmas morning. The sky is impossibly blue, weather having lifted. The retreating cirrus leaves something matte, and—as if cards played the night prior were something predicative—there’s a feeling of permanence. Like this sky could last forever, and unchanged.
We’re at a park near Lindbergh Field, in between houses and in between holiday visits. It could always be this blue, and, to announce the fact, the planes take off overhead, their perfect paint jobs illumined by the mid-morning sun. Weather, velocity and altitude surely flake the paint on the regular—inevitable atmospherics reducing veneer to scales—but today the jetliners gleam, flawless. Jenn pushes Finn on the swing and he’s laughing; Cayden—my oldest—clack-clacks the sidewalks that loop the greenbelt on his skateboard, and I soak up this Christmas sun on a concrete bench.
There are other dads—that guy with the cargo shorts and grey beard, kid astride his shoulders; the other guy with a palsied face one-handedly flying a kite with his son. There’s a canopied picnic to the left of me, and the table is neatly kerchiefed in plaid; a tow-headed girl hides beneath her dad’s jacket arm near the cooler.
Cayde inexpertly stops in front of me. He received kneepads from Santa and is now invulnerable, and don’t we all wish for that. “Soccer, Daddy?” Cayde suggests. I’m in a loose-knit scarf, suede penny-loafers, and a cardigan but, “Sure,” if only to add to this panorama. Different dads, different children.
Cayden declares goal-markers—“From here to here, Daddy”—but we wind up not keeping score. There are no points, and no point sometimes to numbers. Before, I would introduce the fact of Findlay’s diagnosis as ‘Trisomy-21.’ The dash and mathematic embellishment meant I didn’t have to say ‘Down’, nor—certainly—‘Mongoloid.’ But now: 21, 47: who cares? There are numbers on the underside of the airliners that are currently taking off, and they mean as little to me.
Numbers suggest perpetuity. Also a constant countdown to a something, nothing: a dwindling arithmetic.
Suede-footed, I bend a kick Cayden’s direction and, as if there’s a cosmic time signature at play, the ball caroms mid-air while Finn laughs in the background kicking his legs in an upwards swing. An orange-bellied plane takes off while the soccer ball pauses, and there’s both a temporary and permanent suspension.

Cayden · Down syndrome · Findlay · parenting · wife

The Downs Kid in Room 3

Intravenous DripFinn, who has Down Syndrome, had to go to the Emergency Room this evening. Yesterday afternoon–and all through the night–he threw up twice an hour, every hour. Miserable little fits where afterwards he could only manage half a cry before returning a thumb to his mouth.  His eyes were purple-lidded and he was super-pale. This is saying a lot: Finn is the definition of ginger, even as his hair slowly blondes toward something more flaxen. To be paler than normal is to be near translucent.

I get a phone call this afternoon that my wife Jenn is off to the hospital.

I leave work early, and in the rain. By the time I arrive at Rady’s Children’s Hospital, Finn’s brother Cayde is a nervous wreck. “I don’t know how to be me right now, ” he tells Jenn. “Do I be funny and just tell Finn some jokes?” He’s nervous that this visit might be something of an ordeal, with lots of medicine and multiple waiting rooms. It’s where we went when Cayde broke his arm in two places and had it reset under the influence of a ketamine drip. It was an Alice in Wonderland trip that ended with us exhausted and back home at 2 a.m., seven hours and four med stations later.

Finn just needs some re-hydration, but Cayde is very anxious that this might be a ‘big visit’ with lots of needles and cuffs, no lollipop at the end. He fairly shuts down. By the time I drive up to the ER front door, Jenn  just decides to send Cayde out to the car where he tumbles rain-dampened into the backseat, a wrinkled package for me to drive home.

The traffic queue out of Rady’s is a failed choreography of mismatched traffic signals and nurses evacuating their shifts in droves. It takes forty-five minutes to drive the half-mile to the freeway entrance.

“This traffic is dumb,” Cayde announces.




“It’s the ‘F’ word,” Cayde continues. “And the ‘A’ word with ‘hole.'”

Appropriate, but inappropriate at once.

I redirect and we have a leather-seat dance party with a rain-spotted windshield, headlights all swimmy, to some electro music. We follow with a mantra of ‘Light-Turn-Green’ voiced by the Muppets. Kermit, Fozzie, Miss Piggie. (Cayde particularly likes our Animal shout-along).

Meanwhile, Jenn wears the cape and courses Finn through the various stations. A nurse decides to poke Finn with an IV, which–ex post facto–we find out was NOT ok’d by the attending physician. Lactated Ringer’s is the quickest way to hydration–but still sometimes the scariest–for toddlers. Finn is terrified; the nurse does two bad sticks and elucidates, six times over, how Downs’ are sometimes hard to stick intravenously. How Downs’ have these fatty pads in their hands and wrists. How Downs’ don’t take to the needle as well.

I mentioned my wife wore the cape today. She tells the nurse: “You know, he’s not ‘a Downs’–he ‘s a child with Down Syndrome.” The nurse is reportedly apologetic and mentions her thirteen-years veteran-hood and how she’s never had anybody correct her otherwise.

I’m certain there’s probably this nurse vernacular: ‘I gotta Downs in Room 3.’ Still: this is not the Westminster Dog Show, and Finn is not a collie. He’s not a breed; he simply has a syndrome.

Cayde: ‘The ‘F’ word, with the ‘A’ word and ‘hole.’

We slowly drive home and count down the exits. I turn down our dance-party music and Cayde is mouthing the beats as if they were words.

‘Hey Cayde–listen.’ We’re nearing some concrete overpass and, in turning down the radio, we hear the incessant sizzle of rain on the windshield, this suggestion of momentum; we drive beneath the overpass and the sound suddenly ceases, like applause stopped, and then it begins again.

Finn’s IV doesn’t take. The ‘Downs kid in Room 3’ gets some apple juice, and then my wife and son return home.

anxiety · cooking · Down syndrome · Findlay · home · parenting


white noiseToday I enjoyed the rare occasion of having the morning to myself.
Well, this is not entirely true: I had Finn to take care of, if only for a short while before Jenn was to return home from a circuit of errands and visits.
Cayde was away at a friend’s place, his mere absence from the home enough to seemingly de-person the house by three. Quiet is a creature unknown to the parent of a five-year old, much less a five-year old possessed of a precocious yin and yang. Cayde embodies a big personality, alternately sweet and sour. The vinegar and honey we find so favorable in combination on the palate is sometimes less so when extended to matters of temperament.
When Cayde is gone I miss him both terribly and fondly. Terribly because his amber sentiments and otherwise honeyed ways are suddenly absent. No blond hair decorates the rooms. The sweetness he engenders is lacking, as are the hugs and the spontaneous games he creates to pass the time. But if I miss him terribly, I also miss him fondly because—in that vacuum of time while he’s away—the acid parts of his behavior are also away, and missing him becomes easy and sentimental.
One of my favorite song lyrics is: “I miss you when you’re around/ I’m never lonesome when I’m by myself.”
This morning it was Finn and me. Finn is as much an easy complement to the a.m hour as a prolonged cup of coffee or a leisurely read of the dailies. Given a highchair session (in which at session’s end, Finn will list starboard in his seat and entreat ‘more more more’ with a clapping of hands) and an ecstatic jump-about in his bouncie, Finn is predictably ready for a nap. Nap time is usually signaled by a series of yawns, some light fussing, and—upon being picked up—a burrowing into the shoulder.
Today was no different. Being hypotonic—having low muscle tone—Finn accordion-folded easily into my neck like a well-creased sheet of origami paper. It’s sometimes what people find precious about children with Down Syndrome: their low tone lends agreeability to a hug. There is no resistance, just complacency; and as we want things to be easy—always—this seems a gift. Finn is easy.
The refrigerator hummed monotone this morning once I put Finn down: a white noise and the only registerable sound in the house. Usually, there is music playing in the kitchen, but melody was on lockdown this particular a.m. Given to white noise—the thrumming of the fridge, the drawing of a bath—there was room to think and thoughts pulsed along with the chevron up and down of some quiet and background orchestra.
I remembered being a kid some years ago and listening to the vent of the heater come 6 a.m., snuggled in blankets and hearing a near chorale of voices ride in on the warmed air.
White noise becomes many-colored when given an ear, and single tones spiral into a multitude of accidental tenors if given the concentration. There always exists a chorus in one steady note.
I used to lie in bed, my six-year old self, and stare at the popcorn ceiling. That old acoustic-applique–that Seventies’ thing–craterous and conducive to imaginary images suspended above the bed. Morning would sneak in through the sycamore leaves just outside the window and, while the heater persisted, senses would jump ship one deck to the other: a dip in the heater’s register became a spangle of color, the grey-tones of the ceiling would shift suddenly into something tenorous. Then I’d press thumbs into my closed eyeballs until I saw colored spots. I’d open my eyes and there’d be chains of reds and blues obscuring parts of the ceiling, and the shadows of the sycamore leaves were suddenly multitudinous notes in the one-note drone of the heater. Until the heater shut off: then the spangles became ellipses and all would be quiet.
Thirty years later, the refrigerator and its thrumming white noise failed to make as splendorous a play. The sound was present, but not the grand sensorial show; the mechanical whir of the fridge attuned itself instead to the all-too-usual discomfiting pulse of caffeine; that and its bridesmaid, a steady dose of OCD, that something frenetic, which led me room to room buzzing impotently. The living room was askew. Disconcertingly so, as it was in the process of being redecorated. Bookshelves had lost their alignment and the new couch didn’t yet have its matching rug; the room was segueing warm to cool and with the room not having made up its mind just yet, I retreated. The porch plants needed attendance—the season was changing—and the side-yard begged attention. Aagh.
I checked on Finn. He was reliably asleep. With him being so easy, I should’ve been just as reliably productive. But instead, there was me simply being stuck. Warm light poured through recently un-curtained windows, the chaise lounge proved grey and noncommittally soothing. There was orange chair, old chair, and something purpurea just poking above the front window. I was poised and holding the kitchen counter in pretend support.
These minutes. These certained minutes. While Cayde is away and while Finn is asleep—it should be easy time for me. But currently I’m disliking ‘easy’: something in me recoils at the word, the concept even. Finn is often described, near categorized, as: ‘good’. Which, to me, seems—frankly–a lazy interpolation of ‘easy.’ Cayden is a good kid, too, but far from ‘easy.’
I held on to the kitchen counter unsure. Pausing. My vinegar child was away, my honey one slept. And I’m usually proud of my productivity, but meanwhile: what to do, what to do. I was balking. Jenn already did the laundry.
Refrigerator thrumming, I pulled a knife off its magnetic strip, and set down a bamboo cutting board. My hands tend to shake when coffee’s involved. I found a forgotten grip of mushrooms in the produce bin, remembered there were shallots in the pantry. Something automatic took over, and there was the wiping of mushroom caps, a snap-click of the burner-ignition, olive oil and a fair amount of chopping. Two fires: one, stock and wine; the other, a methodical offering of ingredients. Creminis and garlic, thyme, shallots, and salt. Season with vinegar—chef’s secret. It’s so simple to me, so practiced.
I generally dislike simple. I dislike easy, even when it quells the shakes in my hands. I worried once that Finn’s demeanor—his agreeability—was flag to his diagnosis. Is his easiness a side effect of his syndrome? He has an extra chromosome: why does this complication, this duplication of genetic material result in something less problematic, less byzantine, than the normal expression of genes? Is he ironically easy? Somehow simple?
Friends I’ve recently met, those who also parent children with Down Syndrome deny easiness. It’s not entirely unique to Finn, but it’s rare. He’s easy not because he’s good or simple or IQ-depressed or because his chromosomes have over-expressed themselves. It’s who he is. Completely opposite his Papa who is high-strung, compulsive, and one shade shy of Alvy Singer.
Finn: he slept this morning, then woke up watchful, happy. Voila: there was a perfect reduction on the stove-top. Finn—he clapped his hands and, with reddish locks curling his ears, signed ‘more, more’ not because in his high-chair he was actually celebrating anything I did while he slept. ‘More, more,’ he signed, because nothing while he slept actually mattered.
Instead: ‘more, more.’ As in: more Cayde (‘drudder’) and Mama and Dada. How simple easy things become complicated.