I’ve had this blog-space for a while. But it’s remained un-launched. In my ‘rough drafts’ folder sits an unfinished piece regarding Findlay’s birth. Always thought I needed to finish that piece first before writing anything else on this page. In the meanwhile, I write errant thoughts into the Facebook ether; sometimes the ether crystallizes into a quantifiable ‘like’, or–better yet–a comment. I write compulsively, not necessarily seeking comment, but–still–reaction informs me and all this month kind respondents have said: ‘write.’ I keep returning to the piece regarding Finn’s diagnosis. And I stall. That’s a hard one. Can’t seem to finish it. Last night, on World Down Syndrome Day, Jenny tells me my musings need space of their own outside the Facebook stream. And this morning, my friend Delaney says ‘these pieces need a collective vessel.’ Delaney’s a good writer, and compulsive in his authorship like me. So, in the spirit of filling a vessel and beginning the beginning–which I’m coming to terms with is NOT the birth story, I’m transferring my FB posts about Finn and my family here: to ‘Daddy Medium-Well.’ The foodie/daddy blog I’ve been imagining for a while. Revisiting old writings is a good way to stimulate new writing. And I’ve never been more compelled to write than now. Especially with the urgings from my wife and my friends So:
Nov. 23, 2011. Turned off the television to better hear the dishwasher. (It really is a comfortable noise). Dug up an old Sharon Olds book from college and was arrested by a line from ‘The Wellspring’: ‘We have come to the end of questions.’ It’s a peaceful line, and it makes me think of this week: sitting in an orange leather chair, sunlight angling autumnal, knowing that in the next room Jenny’s asleep and Cayde is an arms-asplay, Land-of-Nod starfish next to her. It’s Thanksgiving. What better to be thankful for than the solidity of this: my family and the end of questions.
Meanwhile, Jenny sleeps. And the baby grows. You see, our family will be four–not three–come June of next year.
Happy Thanksgiving, everyone.
(There’s a long pause in the FB timeline. Then this, a few days after Finn was born and the world was upside-down:)
June 30, 2012: There is something so inexorably right about today. I wrote to a friend a few minutes back: there’s incredible things hidden in the everyday, things you don’t find out about until one given day just proves itself not the usual everyday. And I want to cry at the drop of a hat these days, but usually ecstatically. And there’s the perfume of ginger and scaliion in the kitchen, and the right people are peopling this house.
(I believe I owe that one to Chris and Kyle Bolton, Ryan Newstrum and Sara Grace Lingafelter too).
July 19th, 2012: I was touring a family today at the Penguin Encounter. The dad had his cell phone on point, being conspicuously inconspicuous somewhere’s in the background, hovering over the mouthpiece while I showcased a Macaroni Penguin to the rest of his fam. His kid starts broadcasting some patterned yelping noise at which point Dad covers the phone, levels his gaze, and says: “Thom–my kid has autism, and he does this. Will this be a problem? I can take him out of the building if it’s too disruptive.” I actually find his cellphone more disruptive, but I lend him a smile and say: “No–it’s completely fine.” I stop short of saying: “It’s ok–I have a differently-abled (?), different needs (?) child at home. I almost voiced an un-admitted something to a complete–and arguably rude–stranger about happenstance I haven’t yet found a proper voice for. Findlay Cooper is a month old today: big blue eyes and and an orangutan wisp of hair peaking his precious head. Finn has Down Syndrome. It’s a declarative something I now say everyday knowing it’s a simple fact, nothing I’m embarrassed about–just something that is difficult to comprehend and something that will blossom as future gift to my family. I was sad that Cellphone Dad eventually found an excuse to remove his kid from the building–luckily the kid got to pet the penguin first–and I though to my own child, Findlay Cooper, who at 30 days is opening his eyes more and more and who, with each passing day, garners a great and unadulterated love. He will never be excused from the building, so to speak. He’s my kid. I love him.
(That was the first time I told the FB everybody that my child was diagnosed with Trisomy-21).
Aug. 27, 2012: Mama was away at hot yoga. So me, Cayde, and Findlay had an impromptu dance party to the Bobby Fuller Trio, courtesy of the ‘Fantastic Mr. Fox’ soundtrack. I’ve had moments wherein Finn’s threatened a smile at me, but today I got the full grin, from ear to curly ear while Cayde bopped around in the kitchen making his own anarchic noise and while I swayed Fin in front of the speakers. These are moments when all is ok, OK meaning something exceptional. Hut-hut, Findlay laughed. yes, all is well.
(All was not entirely ok. Finn needed reconstructive heart surgery in September. A lot of my writings got lost, but I posted an all’s well on September 12th).
Sept. 12, 2012: Our hearts are full, and Findlay’s heart is whole for the first time. The surgery was a success. From the most laconic of surgeons (and say this in your best Slovak accent): “He’s fine. All went well.” When leaving the hospital, Findlay was about to be extubated. The skilled nurse who, having navigated a bewildering map-work of hoses, tubes and pumps all day in the PICU proclaimed his recovery flawless.
Sept. 13, 2012: Findlay has been recuperating at a speed only known to superheroes [we festooned Findlay with a superhero cape on his way to surgery]. His cape is flagging in the wind behind him. IV lines are out today, and a disused pacemaker has been disconnected (his heart has been beating fine and steadily ever since the bypass machine was summarily switched off). I got to hold him for a few minutes as he was being transferred from scary-big hospital bed to right-sized crib (I even coaxed some smiles out of him). Jenn and I are ecstatic. It’s like the universe has suddenly given us the ok to just now enjoy a healthy baby. For us to stop holding our collective breaths and begin living again.
(More posts lost to FB, sadly. Much later…)
Mar. 8, 2013: Holding Finn today in the kitchen, his ginger hair and blue eyes peeking out from beneath an orange-banded crocheted hoodie. He is typically wide-eyed and drop-lipped, a look of either perpetual amazement or bewilderment. At the moment it’s bewilderment, I think. His reach is halfway there, and he has discovered Daddy’s beard.
When Findlay encounters something nee, he claps his fingers in excitement: and, always, like some cosmic Zen joke, it’s invariably one hand clapping. Clap-clap.
My palm has three creases, Finn’s has one: a trisomy-21 single traverse palmar crease. (In case you were looking for some vocabulary).
Finn claps his one hand and smiles: instantly his face transforms, his eyes become little parabolic slits, his smile that of the muse Thalia, except with slightly protrusive tongue. There’s no Melponome counterpart. Finn’s rarely upset. No one has asked him: ‘Why the long face?’
He’s an unwaveringly happy kid and I have absolutely no idea what that must be like.
I set Finn’s carrier down on the ground today beneath a curbside banner while I fumbled with car keys and grocery bags. A lady actually ran out of a storefront and exclaimed: ‘Oh my God! I’ve never seen anything like that! Look at how he looks at that flag!” And Finn was right intent, wide constellated eyes taking in the furling fabric. “He likes trees, too, I say. “Movement.” I’m not sure what else to say. I put away the groceries. Beer and salsa.
I hold Finn. He gnaws on my shoulder, and there are those ever-present blue eyes. His body is limp save for his trembling reach, this time for my glasses. He is hypotonic: part of the diagnosis. Cayde destroyed my glasses when he was eight months. Finn is polite: he bats at them.
Last week, I took Finn to the PT. She had a hawkish nose and wore some essential oil. Finn was floppy. He wore his Thalia smile and curled armadillo when the PT tried to sit him up. We were on a cushioned mat in front of mirrors. Finn laughed every time he caved into a somersault.
“Well, he’s not near crawling.”
“I know.” I’m staring at myself in the mirror, just above my son’s reflection. I consider: I look haggard. Were it not for the hat and scarf, I’d present as unkempt. Not the insouciance I was going for. My hair is greying.
“You know he may not walk until he is two, perhaps four.”
“I know.” i need a haircut. Crows have made tracks beneath my eyes.
“You know you can’t compare him to your first-born. Fin’ll get there. But in his own time.”
“I know.” I smile for pretend at first. then I smile for real. “I know.”
We always worry about our babies growing up too fast, don’t we?
Finn and I sit on the porch and remark the plants. I out-loud blame him for my grey hairs: he babbles.
And his one hand claps.
(Finally:)
Mar. 21, 2013: Sitting in the big orange chair with Finn on my lap, my arms loosely circled around his waist. He is asleep, belly sated, head tucked deep in to my shoulder. My cat, Frida, sees an opportunity: I am goddamn SITTING for a change. This is novel. She works her way up the chair in near-ermine fashion, weaseling into my lap by shoving her head through my clasped arms and finally onto the shoulder opposite Finn. She is proud of herself. She purrs in self-congratulation. Finn, meanwhile, purrs in his own fashion, but his rattle is more resemblant of a rusty radiator. He’s milk-drunk. His snores snag at every draw of breath. Frida is half on top of him, and suddenly I have a strange set of Romany twins in my lap: one’s furred, one’s Finned.
Frida hates Cayden. I don’t like to say it, but she does. She keeps a two-room distance at all times between herself and the Boy. When Frida hears Jenny’s van pull up, she understands there is sure cargo of blond-haired terror on board, and, Frida–she moves quick. Low to the ground, tail puffed proportionate to the duster we use to sweep cobwebs from the sills. She usually finds refuge in a closet somewhere, buried among piles of leather boots, or–more often than not–hidden in the skirted bed ruffle waiting for night when the Boy’s asleep and she can leap softly onto the bed and take a purring nap next to my passed-out self. Cats: they’re barometers of something. My Mom’s cat is the same: he could very well sleep on Finn’s head, but will retreat to anywhere’s far and away from Cayde.
At work, we know animals ‘know’ things. There’s people they avoid, those they choose to cling to. At home, it’s the same joke. We keep a diorama of the St. Francis of Assissi on the bookshelf because I seem to attract every friends’ pet, despite their sometimes unfriendly dispositions. Finn seems to have the same draw, at least with the feline set. It would be cliche to say it’s because of his diagnosis, that he’s necessarily gentle-mannered. I prefer to thing the Francis thing is simply inherited. That it’s not his diagnosis.
Was walking with my friend Jen the other day and her son Ben. Ben has Down Syndrome. He is awesome: has got a streak of independence in him, incredibly spirited. Ben paused, mid-walk, when a rather natty hipster strolled by, about to duck into the Whistlestop Bar. Ben solicited a hug and then a second one. God bless Jen: she said, “How cliche was that?” she rolled her eyes. We need maintain a sense of humor. At this point, we know cliches are sometimes problematic. In which case, I’d like it if my cat chose to not like Finn, for at least a day. Because Down Syndrome is more normal than not. It exists, and–well–on World Down Syndrome Day, we need recognize difference as the norm. Love to my red-haired boy.
“
one hand clapping. Clap-clap.
Daddy, medium-well. 