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.

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I like words. Sometimes I find words and type them into my phone to think about later. While at SanFran’s ‘Exploratorium’ this summer i happened upon ‘catenary.’

(Wiki: ‘in physics and geometry, a catenary is the curve that an idealized hanging chain or cable assumes under its own weight when supported only at its ends.’)

I called my best friend this weekend–which is rare seeing as I hate the phone–and warned him: ‘i’m in full Daddy mode right now. Got three kids in the house, a saute pan going, and I’m grilling.’ We exchanged ‘how are you’s’.

‘How are you?’ is an important question, even when asked casually.

The question was asked of me and I had to think while poking at some tandoor chicken. I angered the fire with a greasing of grapeseed oil and finally decided upon: ‘Good, actually. Really good.’

Which was true, but also qualified with: ‘I’m exhausted.’ As in: there’s fatigue, uneven sleeping patterns, the constant shell-shock of anxiety. I can’t find a photograph where my eyes are not looking older.

Still: good, I guess.

Turning the chicken on the grill, I hear the kids play and they spill out into the backyard. My son’s friend takes particular notice of a dessicated snail-shell on the ground and asks for a paper bag so that he can collect it. A ‘specimen bag’, he wants.  I amuse myself and give him the only small paper sack I have. It’s from the ‘Museum of Communism’, via Prague. (Twice I’ve been gifted Hungarian paprika from my better-travelled friends and this last time I saved the bag).

I tell my friend what is good. Which could otherwise be lost, like the broccoli spears I dropped in the coals while explaining:

‘Had beers with some new friends at a North Park school fundraiser. Feel really good about work. Started up an e-mail exchange with an old friend leaving FB. Coached soccer. Got this amazing gift of cookbooks from my buddy in Jersey…’

The chicken is done. Cayde’s friend has meanwhile discarded his Communist knapsack on the sidewalk, contents being: one snail-shell and one dried-up myrtle leaf.

Our phones disconnect. I was telling my friend about a recent writing gig before the wires uncross.

(Again, I love words).

‘Catenary.’ So often I say: ‘burning the candle at both ends.’ But to rather say ‘suspended at two ends’ is better.  The chainette in the middle feels the weight but also takes on an attractive curve. This somehow seems more appropriate.

Like when Cayde wants to scooter down to the school with the neighborhood kids and ride the guard-railed and makeshift ramp, just when I’m desperately trying to get the cooking done (I put the knife down, I sigh, we ride);or, when we’re in Long Beach with friends and Cayde interrupts a game of billiards and we must have a time-out wherein I show Cayde how to aim the stick. (With four hands on the cue, Cayde sinks the ‘7’).

The interruptions are good. Amazing really, no matter how heavy my eyes get.

I have an affinity for the telephone wires that criss-cross North Park. The not-exactly parabolic lines they present. Catenary, and suspended at two ends. Without tension, with just some weight.

There’s a reason I saved the word.