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.

Cayden · family · Findlay · home · wife

Hummingbird Heart

hummingbird heartTwice in the canyon today. Once at daybreak when it was 37 degrees and the birds were waking; second time in a more crepuscular hour when an explosion of parrots dominated the eucalyptus, conure hybrids from escaped cages happy to be alive.

Cayde was away in the desert with his cousins, watching the jet planes do their practice runs, and there was a particular ease to the day. I had Finn for the better part of the morning and—typical—he asked for ‘Wench Wies’ (French Fries) so I atypically took him to the fast food joint where we could get a cheeseburger to share, and where he could get his potatoes. We sat in the breakfast nook, and passed the burger back and forth, exchanging bites. Later, when I was writing, he snuck into my closet and—discovering some foot powder—gleefully antiqued the house with aplomb, dusting everything in white. Little imp. Too tired to clean things up, me having been awake since three, we just retired to bed leaving the house white as an Elizabethan mask, his stuffies and rugs resolutely covered in talcum snow.

Jenn and I cleaned things up later—together—a quiet team, and it was then that Jenn showed me the mail. We received some monies—substantial monies, monies with promised and residual return that will change our lives.

And I celebrated by taking a walk to the canyon where I would see the paraques and warblers, but first I passed the bar where Mac was working and I swung around the countertop to hug and kiss her because she is beautiful and teaches piano to children; still I said: “just passing through.” And Mac gripped my hand seeing that I was happy and because my life is an Altman film starring Richard Gere, and I sat in the canyon with the leaves all fire-shot and stared at the beauty of a telephone pole which peeks out over the canyon rim.

On the way home, I serendipitously ran into Jenn who was just leaving in her car to pick up Cayde and I climbed in so we could all be together. Once in the backseat Cayde said all these bodhisattva things, my little foul-mouthed empath, who also said: “Mommy—you have a shitty memory—sometimes you say things to me twice in a row.” My little bodhisattva boy whose head is matched by his heart and who remarks to me that he wants to help the homeless and cries at movies when families get separated.

We went to a chicken joint to celebrate where we sat beneath space heaters and were warmed inside and out, me enjoying a bed of chicken oysters and celebratory libation, and where I looked lovingly at my bride, my champion, my girl, my Isolde, the love of my life (and I’m the Story of hers); and felt the contentment of being in absolute control of my destiny, no longer feeling lost as the setting moon, wanting only the sunshine of better days.

Every day is a new day, some better than others, and today was a day writ in giant red letters, like the Beatitudes, and I was happy for everything in my life: napping with Finn in a talcum-dusted house; hearing Cayde, my backseat Buddha, speak his compassion; working together with my wife in loving our family; the explosions of birds, which not only populate the trees but which explode thrice in this, my hummingbird heart.

anxiety · Findlay · home · mania · mental health

Hands, hands

nails-1420329_960_720I don’t write about Finn often. Not any more at least.

But I post pictures because he’s a unicorn and he not only make my heart burst every day, but he also makes other peoples’ day.

I took him to the Store on Sunday, where he, of course, grabbed everything off the shelves and kicked in the grocery cart kid seat, happy as can be.

Sunday was a bad day for the Store because the power went out briefly; the meat freezer had to be cleared, there was no radio, and the registers lacked the capacity to speak to the robot overlords. Store was a wreck.

Maybe I was, too. I’m having problems with anxiety again, which is counter-intuitive to how happy I am.

I can’t gauge or radar my dysfunction; I just deal with it.

I laid down on the bed after our outing and Jenn was with me. Finn said: ‘Hands, hands.’ Not perfectly, but clear enough.

He took my hand, put it into Jenn’s, and wedged his palm in the middle, then smiled.

“Mommy. Daddy,” he said, which was clear enough.

Findlay · home

The Appreciable Quiet

fridaMy cat Frida is going on her sixteenth year and—as with any centenarian—is hard of hearing. Frida’s eyes are still clear and without blemish, her teeth intact, so she’s otherwise winning in the age game despite the fact of her world now monasterial in its quiet. Maybe she’s winning because her eardrums have retired their vibrations. I don’t know—I just wonder if she feels we’ve inexplicably stopped talking to her.

I’m only guessing, but I don’t think felines have an idea of what deafness is. Frida just yowls louder now when entering a room, the way people raise their voices when speaking to out-of-country visitors. But volume rarely equals comprehension despite the instinct to raise a voice when feeling misunderstood. I’ve learned to make eye contact with her until her whiskers point antennae-like recognition. Every night she visits me where I sit on the couch writing; she announces her presence, then curls up on the backrest of the sofa, legs wrapped around my neck like a living stole, head next to my ear. She’s replaced our usual conversation with more tactile communication, and purrs something she herself probably can’t hear.

Finn appears in the living room at night, too. Like clockwork, even. At midnight, there is the click of a bedroom door, then the sound of little feet trundling their way through the kitchen.

“Daddy—‘wahr’,” and Finn will tap his chin with the ASL ‘W’ before sidling next to me on the sofa, thumb resolutely in mouth. ‘Water.’ Then Finn will tap at the screen of my laptop, not understanding the magic, yet, of the keyboard. I’ll retrieve him a cup of water, our ritual, and then lift him from his perch and replace him in bed. These are the ways you communicate in the appreciable quiet, when the mockingbirds have given up their late night din in exchange for crickets and paraques and when we could all be deaf yet still hear everything.

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.

<Click>

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.

<click>

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.

rachmaninoff_op16no3

_____________

 

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.

father-holding-hand-of-baby-sami-sarkis

Cayden · childhood · family · Findlay · home · parenting

Chuting

The other night I picked Findlay up off the floor and replaced him in his bed before retiring to sleep myself. Findlay has the bottom bunk, so he can have soft landing if need be despite the hardwood floors.

Finn’s a restless sleeper, prefers nodding atop the covers as opposed to within them. As a kid—hell, still as an adult—I enshroud myself with bed sheets in an act of self-mummification every night. This is opposite Finn. It may look uncomfortable, with only my nose snorkeling out, but it’s great security.

I remember spending the night at my grandma’s years ago, and three times at least she ventured into the bedroom to peel back the covers. It was her futile attempt to maybe try and oxygenate things. She was a former nurse, after all, and it was probably professional memory that said the bed sheets should be crisp and folded back. Meanwhile I was—and am—a furnace, a night-sweater, a raging metabolism, which probably presents as malarial sometimes. I forgive my grandma’s Florence Nightingale attempts, but I always pulled the covers back over my head. Couldn’t—can’t—sleep otherwise.

Finn has the bottom bunk, while Cayden has the top. It’s easy to smooth out Finn’s bed in the morning because he hardly uses it. But top bunks are logistically hard to make. It’s a hassle, but I leave Cayde’s bed alone for reasons other than the difficulty factor. Turns out Cayde has the same nocturnal intuition I do, just in a different fashion. Whereas I’m the near Phoenician master at bed sheet entombment, Cayde is a nester. A pack rat of sorts. There’s the usual array of bed dressing, a menagerie of collected blankets stuffed into the corners, a rolled-up sleeping bag that sometimes gets unrolled, assorted beanies and sweatshirts and cast-off stuffed animals. Occasionally I’ll find Cayde sleeping in a hoodie and a knit cap, and we live in San Diego. Whatever gets you through the night.

In zookeeping and agriculture, there’s what’s called the ‘chute’. It takes myriad forms, but essentially it’s a narrow construction that you can either drop animals into for a procedure, else use to move animals forward, calmly, generally livestock. The alternative in either scenario, without the chute, is nostril-flared panic.

Finn, inevitably crawls into our bed most nights, somnambulistic, yet finds his way in between us regardless. This is something of a chuting, how he nestles between us, but it becomes also something of a quasi-asleep circus, in which he has the comfort of his thumb, still bolts upright every half-hour. He flops opposite directions like a slo-motion trapeze artist, while never even waking up.

I’ll find him at the foot of the bed alongside my cat, both microwaving my feet, else he’ll pin the sheets between the lot of us, and incessantly grasp my hand in his rendition of a comfort gesture. This inevitably wakes me up.

Finn’s chuting, I’m the unfortunate chute.

The compromise comes with the perpetual 4 a.m. tug for sheets, the sheets I need to wrap around my head. Finn’s content with his thumb, so I tuck him into my side, and wrap the Egyptian cotton sheets over the two of us, us paired and sleeping mummies.

Cayden · family · Findlay · home · parenting

The Continuing Adventures of Professor Plum and Mr. Green

Cayde keeps carting out the old school Milton-Bradleys, though we’re capable of playing a mean game of Chinese poker, and while Colonel Mustard remains simply a roadblock in our preferred and perpetual game of Professor Plum v. Mr. Green.

Sure, sometimes Colonel Mustard is guilty inasmuch as the cards may fall, but I’m Plum; Cayden is forever Green. Sometimes we call each other by these monikers, just like I’ll call him ‘Caydito’ and he’ll call me ‘Tomate´.  As Plum and Green, we’re always one third the field away from each other on the playing board. The fact of Mustard remains irrelevant.

In the game of Plum v. Green, it’s a race to see who can get to all the rooms first, as fast as possible. This is how you beat Clue.

The perp is always the first to be found out. You know this if you play Clue on the regular. Discovering the weapon is always the easy second.

But knowing the room where it happened—well, that’s the trick. And how best you lie to each other, slyly, and while improvising your best put-downs in the process—it’s better than Risk, better than chess.

Were there less decorum, the floor would be spoilt with spent sunflower hulls. The kitchen, however, is clean, so we have to pollute it with the tidier effluvium of pheromones and the slight dispense of testosterone that comes with the housing of our imperfect X-chromosomes.

Boys like to fight, especially if they love each other.

“I went to the bathroom, and you looked at my cards.”

“Did not.”

“You lied TWICE about the wrench. Jerk. What are you doing in the library anyway? When’s the last time you read a book?”

”Oh, just stay in the kitchen, Daddy.”

This is absolute, unadulterated love.

Last night, Cayden lugged out Yahtzee. I like to play Yahtzee. Yahtzee, however, lends itself more to a general kismet, than any sort of verbal kinetic. Shouting at dice only goes so far. A game of dice is not Deerhunter material, especially in a well-lit room with dinner dishes that—having promised to be washed—sit with great domestic placidity, in the sink.

I could bare a light-bulb or something, but that would be overly dramatic.

Finn yelled in our stead. The ageless Pat and Vanna combo was on TV in the living room, and Wheel of Fortune was filling its half-hour.

“A!”

“N!”

“L!”

Cayden scratched off his ‘four of a kind’; I believe, meanwhile, Findlay solved the puzzle. From what I could hear at least. Truly, Finn’s magnificent at shouting letters. Sajak, in all his Dorian Gray-ness grants Findlay this parent-free speech practice a few nights a week.

“T!”

There are muted dings from the TV screen; someone wins a car.

Cayden and I do Jeopardy every night, but as precursor, we’ve set up—Gawd—the ‘Connect Four’ set.

‘Connect Four’ was our tee-ball leading to chess. Cayden was three, and I plied the same strategies over and over to teach him how to lose. It was the best way to teach him how to win.

“The diagonals, Dude. You have to watch the diagonals.” Plunk, plunk.

Eventually he duplicated my method, than added his own riff, to where I would gladly lose on the regular. This is how you win as a dad.

The stakes are high this night. As spoiler, I will beat the current Jeopardy champion later by deadpanning, ‘F. Scott Fitzgerald’, pocketing whatever Monopoly money it is you do when you win Final Jeopardy for again and pretend. Before sending your kid off to bed as the faux and bona fide Merv Griffin champion, no actual change in your purse.

Finn is on my lap, and because we’ve lost many of the pieces, Cayde has taken a Sharpee to a few red tokens, marking them with resolute and carefully drawn crosses.

“These are yours, Daddy.” I’m always black, he’s always red.

Finn did really well in Speech earlier in the morning, hop hop skip skip, pressing way too many elevator buttons, charming everyone. He wouldn’t hold my hand in the parking lot, but played well with his friends in group. He pronounced ‘box’ at his therapist’s prompting time for the first time, with an actual ‘x’ sound.

Finn holds the red tokens, now permanently tattooed with Sharpee crosses and I guide his hand to plunk them into the correct columns. He soundly beats Cayden at his own game, me as marionettist. No one’s letting each other win. I stick my tongue out at Cayden and call him a ‘butthead’ when he loses. Finn charmingly echoes:

‘Bu-head.” He then dances gleefully in my lap with his almond eyes all squinted.

Cayde tells Finn to listen–that this is the best part–and he pulls the lever at the bottom of the game board so that all the pieces come crashing down in plastic chaos on the table.

All the reds and blacks combine so that no one can determine who the actual winner was, only ten seconds after there seemingly was one.

Delaney · family · Findlay · parenting

What Spectrum Means

Jenn furrows her brow in her sleep. Which seems ironic, because though rest is for the wicked, it seems the appropriate thing to relax your face while in Nod when you’re not actually wicked.

Jenn, of course, is far from wicked.

I know better, now, then to try and smooth her forehead with my thumb; she’ll just consternate worse on the pillow. And then she’ll be grumpy at me for having tried.

Not that she’s mad at me. We all just have ways of holding our face.

We all have ways of holding our face. I realized this with Finn the other day. He’s hypotonic, meaning he has low muscle control. But he walked far earlier than was predicted, and—before that—he learned how to express himself by manners of smiles and ‘Ta-da’s’, with hands held out in comic prediction of an audience.

I have to explain this all the goddamn time.

“Seems your kid’s high-functioning.”

I don’t get mad. I should. Then again, I shouldn’t. You learn things, and instantly you have to become a teacher for things you didn’t know the day before. You can’t be mad at people that didn’t have to do a quick-study, like we did, with absolutely no preparation.

I have to break out my lecture, constantly, the things I forced myself to learn within two nights of Finn being born.

There is no spectrum with Down Syndrome. Hypotonia means any muscle group can be affected. Voluntary, involuntary.

Finn had a bad heart. Everything else worked. But low muscle tone means there can be any number of effects. This can translate as lo-functioning or hi-functioning. But  isn’t that the case for all of us?

I tell people: this is not a spectrum. Just because I don’t want anything to be misunderstood. I have a fierce love for my kids, and being a Dad was my goal in life.

And while Finn was growing, and while we didn’t know what would be diagnosed later, I wrote every night to my friend while Jenn slept her pregnancy sleep.

Delaney had 174 IQ, Asperger’s—whatever is the new name for it. He was spectral, beautiful, a complete constellation unknowingly formed, and my gorgeous gorgeous friend.

I love spectrums, absolutely, like I love prisms; I just hate misdiagnosis. Delaney was my biggest comfort for the year before he died, and I hope I was his, too.

‘Spect’ is the root of ‘spectrum’, ‘spectacle’, and ‘spectacular’.

‘Spect’ means ‘see’.

So Finn: I realize recently how he holds his face. He waddles around the house, and immune to his diagnosis—still crooked like me—always turns his head up and to the right.

Psychiatrists who pretend these things, say that particular and phrenological posture means you’re constantly lying. If you’re looking up and to the right, it means you’re willfully withholding truth.

Finn doesn’t lie.

I watch him roam the house, happy.

I always combine Finn and Delaney as something experienced at once. Spectral, and not. Both, together.

How do I hold my own face? This I’m uncertain of. But I watch Finn play with his toys, everyday.

“My…Name…Is…Finn.”

(He preps for show and tell).

“I…brought…a…”

Doesn’t matter what he picks. He always tells the truth.

 

family · Findlay · food · neighborhood · parenting

Myxomatosis

Lauren’s wearing pink, like the shade of Janis Joplin’s hair on the cover of ‘Pearl.’ Her voice has similar gravel, too, something throaty, her vocal cords having had a light treatment of steel wool, else granted a god-given chanteuse husk.

Lauren slings pizza.

“Whatcha want?”

She notices Finn who’s rearranging the labels on the display case. A deep-dish sausage is suddenly a thin-crust ricotta.

“Hey, Buddy. You want some pizza?”

“’Tay.’”

(“What’s a venar fricative, again, Ms. Stephanie?”

 “Consonant moved forwards on the palate.”

Ms. Stephanie is wearing a nitrile glove and attending to a plastic baby while Finn pounds a stethoscope’s diaphragm on his own doll. There are pretend heartbeats. It’s speech class, so we provide all the noise.

<bum-boom>

“So ‘K is ‘Tay’?’”

 “Exactly. If you want to make him move back on the palate, you can lie on your back, and make gargling noises with your tongue. Your tongue slides back in that position. If you do it, he might, too. Discover the sounds he can make.”

 “Well, I’m apparently good at snoring,” I shrug, “Guess I could do that.”

 ‘Tay.”

Finn struggles for five minutes to open a Band-Aid, then places it proudly on the vinyl-baby’s knee. He walks to me, places the stethoscope on my lap, and says, “Here, Daddy.”

He tries to put the earpieces in place, but wanders off before my heart is something registered).

Lauren says, “Cheese?” before Finn has a say in the matter. He’s still busy re-arranging the placards. ‘Pepperoni’ is now ‘Jalapeno-pineapple.’ These are minor acts of chaos. I don’t believe in full-time anarchy, but I can get behind part-time rebellion. God Save the Queen, and all that. The Queen’s not on DNR orders yet, nor is mischief.

“Yes, please. And it’s blasphemy to me, Lauren,” I say out of the corner of my mouth, “But gimme a slice of that deep-dish spinach-mushroom thing.”

I mime a shoosh. Deep-dish is not pizza, and Chicago-dogs are dressed-up catastrophes, which celery salt can’t help. Also, don’t get me started on pickles.

The deep-dish is good—I needed the casserole helping of vegetables—and Finn tries to better the experience with shakes of the parmesan canister, the chile flakes, the pepper mill, the napkin dispenser. He throws his Woody doll on my plate, throws the pizza rack on the ground.

“He’ll need help ending his syllables,” Ms. Stephanie says. “They’re a bit messy right now.”

My car is across the street. When crossing over to the pizzeria, Finn dropped Bunny on the street and Bunny’s ears were run over by a passing Mazda. Like on Easter, it’s always the ears first.

Bunny sits, injured, next to the parmesan. We’re ok, though. Finn noms his cheese.

Finn tries to use a fork and knife because that’s how I’m navigating my particular plate. He watches me section a slice and he pounds his utensils into his own helping. It’s a not-even-close approximation, but he’s trying.

Etiquette is difficult. There’s an etiquette program near us called ‘Charm Class.’ (And I only know about cotillion school because I threaten Cayde with it every time he wipes his hands on his shirt).

‘Charm Class’: reverse those words, and you’ve got Finn in a nutshell. He’s a charmer, certainly.

“Pote,” Finn says, knife standing upright in a murder of tomato sauce and cheese.

(He did this with Play-Doh earlier, in Speech)

“Poke, Finn. It’s ‘poke’.”

“Pote.”

“Close, Dude.”

Pink Lauren collects our plates and high-fives Finn.

“Good to see you again, Guy,” she says, lowering herself to his level, and she’s the Janis waitress with a kind bone in her throat.

She says: ‘Pizza’s on me.” I wish her a Mercedes-Benz as I give her a quick hug.

“Thanks, Lauren. That’s very kind.”

“Tank you,” Finn says, throwing a second plastic knife onto the ground. It’s why I tip well. There’s always a mess.

At Speech, Finn has me wear the stethoscope.

“Steto-scope.” It’s a hard lesson today. Big words, big concepts. Finn was asked to say ‘medicine’ at least ten times while offering a syringe to his doll.

“Med-cin.”

“Daddy. Steto-scope.”

I tap on the tympanum. It’s only a plastic toy, but it works. I hold it to his heart and he laughs. He puts it on my knee, which is not where my heart is. I give him credit, though, because the heart is knee-jerk sometimes.

Bunny sits soddenly on the table, ears ruined by Goodyear, wearing parmesan for hair. He should’ve been the patient this morning: ‘med-cin, stat.’

Then again, who can predict being run over? Who’s the sudden and suddenly patient when the wheels arrive too fast?

I pack Bunny away like I pack everything else away, ears dangling out the envelope pouch of my bag, the tire-print proof of damage. I take Finn’s hand and cross back toward the tattoo parlor where my car is parked and where people are currently being scarred on purpose.

Ms. Stephanie asked me to work on the fricatives, with sound being expressed through a narrow passageway. In this case I hold Findlay’s hand and I sigh, and then again, crossing the street carefully so no one gets run over twice.

bipolarity · family · Findlay · neighborhood

Turgidity in the Otherwise Times of Iced Mochas

Sitting at a coffee-shop while nearby patrons describes turgidity and aqueation with notebooks open; I wanna jump into the conversation because everything is interesting to me. They mention Rainbow and Mission, water quality, and upcoming rains. Finn does what I cannot. He plops next door to the guy with the dog on the leash (the dog with the white freckles on his nose and an old demeanor), and Finn starts talking and gesticulating like mad.
To the lady at the counter, I say: “The usual, April.”
April has a PJ Harvey shirt, but–shhh–she’s more Chrissie Hynde’s age, and she love the Pretenders. We talk all the time about music while she grinds the beans. She has a t-shirt with Emily Haine’s autograph and I’m a little bit jealous.
“Baa-bah-du-stff,” Finn says, while waving his Jessie doll around and talking to the guys who are talking about water quality.
This is a perfect afternoon. No rain in sight. But that there’s an AFTERmath of rain, and that people have to talk about it is fantastic to me.
I excuse my kid–the guys with the notebooks smile and say, ‘No problem—kids of our own’, etc.–and Finn owns the patio, ducking behind chairs and crashing potted plants.
I finally get Finn seated, which was not my point, and the water quality guys leave, the dog taking a cool drink from the communal dog bowl before limping out.
Finn waves, “Bye!” because he always does, and why am I so lucky to have him?
Finn does dunk his Jessie AND his monkey doll into the dog bowl maybe three times, but we must not battle windmills.
“Findlay, stop.”
I don’t mean it.
I rather mean: Findlay, go.