Not really. I just stopped being so damned interesting to write about.
I now live in Seattle with my family. I'm an immigrant, a legal alien, a mother, and still married to Viking although he's constantly refused to do anything about that weird toe.
I think I might love him regardless. Funky toe is not a deal breaker, I've found. Such insight in my more mature days. Just blows you away, doesn't it?
My kid has Down syndrome so I'm also a fervent advocate for acceptance, meaningful inclusion and equality. I'm loud. Louder than before. And sometimes yell-y, but wine helps. There is much too much prejudice, disregard, ignorance, ableism, and hate sometimes. It all makes you want to repeatedly drop the f-bomb in various settings. Which I do often. Only I call it "saying FUCK." My kid will soon call it that too, most likely. I'm not proud, but I'm not concerned either. When people don't think you're quite human enough, intentionally or not, other things get pushed to the sidelines. Rightfully so.
In my current life I use the words 'human rights' more than I ever thought I would and cringe when I think back of how unchecked my white privilege largely went while I was living in Africa.
But, you know, wine helps. (Me. Not the situation. The situation needs work.)
I now seem to know exactly what I will do with my life and for the most part proceed quite accordingly. This blog about Down syndrome (click on the link to see how focused my ranting has become) is just a fraction of my do-ing-ness of the life and its living. It involves other platforms and other kinds of being loud too. It suits me: life and living it loudly. I wish I didn't have to do it, the loud part, not the living part, that part's pretty okay, and that the injustices and ableist rhetoric weren't there, but they are. I could not have thought of a better use for my personality if I had tried.
Who knew it wouldn't involve shoes or coffee? Not me. Both are purely recreational.
I still drink too much wine too. If that wasn't clear. Just never when I'm alone with the kid known as Babe even if she's asleep in case I need to rush her to the hospital. Has happened. I'm responsible and can manage an icy road with a baby hooked onto an oxygen tank in the back seat in the middle of the night without panicking.
Her head remains firmly attached and she seems happy enough. All around parenting triumph.
I drive better in my minivan. It's bright red and the Pacific Northwest allows for wide turns most times. I was "wide" backing around the corner in my driving test which I otherwise aced, so I have confidence that I never had before. I have only hit a pole, just a little bit, once.
And I've skipped from continent to continent with a toddler sleeping on my shoulder while carrying two pieces of hand luggage. The width of an airplane seat is no longer enough to occupy my thoughts.
Lately, since I haven't really been getting out of the apartment, on account of the Babe needing to have the oxygen tank by her at all times in case she falls asleep (And as much as I like a good, colorful accessory, I'd prefer a head band with a glittery bow [No. Seriously] or that other Rebecca Minkoff bag instead of the steely geriatric coolness that is an oxygen tank on wheels. Snazzy, huh?), I've been getting weirded out by things on the internetz and things I see from the car on my way to the hospital.
Good stuff folks. And not at all contrived. Nope.
:: Why are people mean and preachy on Baby Center? Oh wait, I know! Probably for the same reason they are unable to spell 'fertile'. There are some folks seriously lacking in the education department.
And I'm not mean. I'm sarcastic, sardonic, and delightfully snarky.
:: If the World Health Organization recommends that all women exclusively breastfeed (just a [not so] little tidbit: My computer is refusing to write 'breast'. It's either because of that same internet phenomenon as Siri sending people looking for abortion clinics to anti-abortion websites [in that case, conservatives/ religious nut jobs, leave my MBP be!], or my MBP just being unaccustomed to writing 'breast' instead of the phonetically more correct, and the far more frequent [with moi]BOOB, which it would probably write comfortably [magically?] without me even touching the keyboard. Whatcha think? Not Friday tidbit-y enough for ya? 'Kay.), for the first six months, why are they not doing anything about the 'maternity leave' afforded to Mexican women/ women in Mexico? No wonder the women quickly switch to (or automatically choose) formula when they are allowed all of 42 days (that's 6 weeks folks) after delivery, at home with the baby? If they're among the lucky ones that is. So if BOOB's the way to go, why is the Mexican legislation making Nestle so much money in formula-proceeds?
I will not be held accountable for how much money I'm making for Nestle by over-using, to the point of actual substance abuse, my new Nespresso machine. This is about formula. Not my addictions.
1) When is Katie Holmes's birthday? On December 21st, when the world is supposed to end!
2) Is Tom Cruise short like I imagine the Mayans were? Yes.
3) Is coffee production suffering in the world? Indeed.
4) Who is in the Nespresso commercials? NOT Tom Cruise. That's who.
5) Is there a Mayan wanna-be (could be Aztec, in which case the world's probably not ending after all, sorry for the panic y'all) dude dancing at a stoplight on the way to the hospital? Yes, but he wasn't there last year.
6) Who died yesterday (Or possibly the day before. I'm on mommy time, so sue me)? The man who counts in the New Year.
Cue 'The Keepers of KH' and the comments of ripping the 'bitter, jealous bully' that this reference naturally makes me, apart. Or not. Maybe there's some sense left in the world after all. We'll see.
And finally. The biggie/ The one that's really mind boggling in ways so disastrous I dare not delve too much into it lest it (grammar is the shiz, right) destroy a part of me permanently. Also know as "people can be so fucking stupid that it makes me want to tear everyone not using the correct terminology a new one".
:: In-laws Random strangers who should at least tolerate you because you married their brother.
And definitely not say they understand if people pity you because you gave birth to someone who, apparently, is not 'normal'.
I'm so angry, I'm amazed I'm still in one piece and there's no blond shrapnel stuck to my new couch.
It seems that I did not look out the window once while on the way to the hospital. Might have been on my iPhone surfing the net.
No point. Just Mexico City.
CLICK on the links people. Then it just might make sense, but I've also been drinking a lot, so really, in the end, all bets are off. And uncorked.
I know what you're thinking, but no, no Facebooking while severely intoxicated again (I've mah-tured, I have, and I also seriously miss South African wines and their prices and have a hard time adjusting to the fact that of all places CostCo should be the best place for quality alcohol. I mean, it's where I go to get diapers in bulk, not my pinot blanc). Not even a little bit. I've been seriously RESPONSIBLE, believe it or not, and all gung-ho motherly, and then even a little Easterly, although you're all aware (the ones who still read this dribble, that is, and Mother) of my holiday track-record and how I really do detest a holiday. So no.
Facebook is the one seriously failing.
Or as I posted on my actual Facebook:
Mark Zuckerberg, you are a giant asshole.
There are pages on Facebook that seem to be created with one sole purpose in mind, to insult and to aggravate. Some of these pages equate Down syndrome with the worst of insults. Now, this is nothing new. There always have been and there always will be jerks who hide behind anonymity (or at least the distance created by the global aspect of the internetz) and for some reason feel the need to do this. Just do a search for Down syndrome on Twitter, or on Facebook, and you'll see the rampant lack of education some folks seem to take pride in, or at least don't mind parading around in their virtual existence.
There's one page in specific on Facebook. Using Down syndrome as an insult and pictures of children with Down syndrome in a way that equals hate speech against a group with a disability.
If you are now searching Facebook for this specific page, please do me a favor and report it. Thanks.
So you'd think they would have flown at the chance of yanking down hate speech. Right?
Well, they haven't. And apparently won't.
The person who owns this despicable page says it's 'social humor'. And by not taking the page down, Facebook agrees.
Mark Zuckerberg is helping to spread hate speech against people with Down syndrome. By actively sending out mails to people reporting the page saying that the page can stay up. Saying that Facebook sees nothing wrong with it, and thus saying that people with Down syndrome should never be listened to, that they have no value and that their diagnosis, which equals a part (but certainly not all or even most) of who they are in this world, is something that can be used to insult, to aggravate, and to hurt.
Just how fucked up is that? Just how fucked up is Facebook?
Babies feeding is offensive, but using someone's diagnosis as something to insult is not?
Totally fucking makes sense, Mark. Like I said in that mail I sent you, the one that you didn't reply to or act upon, "Please don't be an asshole."
If I had a picture of an actual asshole I would have posted that, but, alas, I'm a mother now.
Of course there are the pro-life people, who almost always bring up and force in religion, and then there are the pro-choice people, who talk about the woman's right to choose what to do with her own body.
Now, I have never covered up the fact that I am strongly pro choice. As long as the choice is the woman's/ the couple's, not the surrounding community's, and definitely not the treating doctor's.
Legalizing abortion and maintaining the already gained advances is one of my pet causes. Pro-lifers tend to give me the serious creeps and regardless of what awesome literature they have or don't have standing on their bookshelves (usually my major point of final judgement of any person) they will always primarily be judged by their patronizing view regarding what could very well at some point be my body. A body that not even the Viking has any say over.
"But? What? Back up a minute here lady," you might be saying to yourself right at this very minute, "You just knowingly had a kid with Down Syndrome, didn't you?"
Yes I did. I knew that my baby had Down Syndrome already when I was 13 weeks pregnant with her, and that she had some sort of chromosomal glitch (either an extra one or one missing, was our initial information) going on when I was 12 weeks pregnant with her.
I had a CVS (chorionic villus sampling) test done. I wanted to know exactly what the glitch was so that I could make an informed decision on whether to continue my pregnancy, and also in order to prepare for the future. Had the results said Trisomy 13 or 18, I would have had an abortion. It would have been my right to not bring someone into the world whose short life would have been filled with only pain and suffering (before those become staples of life that is - for my own mother this apparently happened around the time I hit puberty). Had I been in this same situation, -13 weeks pregnant with a child with Down Syndrome - when I had just started university and was together with 'the one before the right one', I would have had an abortion. Had I been in this situation in a parallel universe where I had no chance of education, no resources, an absentee husband, and seven other children to take care of, I hope I would have been smart enough to have an abortion. Had I been one of those people appalled by the fact that my child was going to have a disability and not be in every way superior (if that was ever even possible, right?) to everyone else - an heir to my queen of the world, I hope I would have had an abortion. had I been pregnant with a typical child, but by accident and at the wrong place in my life, I would have had an abortion. It would have been my right. In a lot of the world.
But I was me. In 2011. Pregnant with my first child. Long time married to my best friend and quite possibly the most wonderful man in the world (regardless of the fact that he's still unable to pronounce 'vegetable' and sucks at keeping secrets from me, even about presents he's bought for me). Educated and informed. Pretty well off. And most importantly, able to devote almost every single second of my life, every day now and in the future, to bringing up my child into happy and healthy adulthood and making sure all is well with her.
It didn't matter that she had Down Syndrome. She wasn't going to suffer. Her heart and other organs checked out. There was essentially nothing else different about her compared to any other baby than her karyotype showing one extra 21st chromosome.
And there still isn't - nearly 5 months after she was born. Partly, because, well, there just isn't (it's only one chromosome [and identical to the other two 21st] out of a total of 47, ya'll), and partly because we've aggressively worked with her in developing her muscle tone, reflexes, nervous system, and abilities since she was three weeks old, something we'll keep doing for as long as she needs it.
We have high hopes for her and we'll do our best to make her kind, smart, understanding, witty, responsible, and fun. She'll probably also be stubborn, rebellious, smart mouthed, and obnoxious, but that's all on us.
I, as well as the recent research, strongly believe that nurture, and not so much nature, will determine how she'll be. Let's hope we measure up.
So you see, it all comes down to specific situations. We even have a plan for her should both of us, her parents, die in a blazing inferno/ horrifying car crash/ a freak skiing accident/ Agatha Christie novel, which will never ever leave her drifting, whatever the circumstances (yes, we're aggressively amassing extraordinary people and a large fortune). It seems to me that instead of making blanket statements and decisions about the legality and ethic qualities of prenatal testing and abortion, let's make it so that everyone is able to make the best choice for them while they have the best and newest information regarding their situation, and no one there who considers bringing up a child with Down Syndrome 'an insurmountable task' or a condition 'not viable with life' as some completely misinformed assholes medical practitioners out there seem to be thinking.
The biggest minus of motherhood so far has been the jello they force on you at the hospital.
It'll be a long and wine-y road back to blogging. You'll see.
Now that I have delegated the pungent mommyness - shit, spit and all that gore - from this blog to my other place of neglect and randomness (not a euphemism for what you're thinking, I swear), my new (and as of yet very bare and simplified, cough cough, hrmph, stupid Blogger keeps fucking changing on me all the time, at least once a year, grumble, what's with the 'need for growth?', whine) blog about bringing up a cool little person who just happens to have Down Syndrome and how the world should feel about that, and especially what they should and should not be saying to me about it - 21+21+21=? - I can comfortably fall back into my expatriate rut on this here blog. This blog that's perhaps gasping for air, but might still have a faint pulse.
I might just be able to resuscitate it. Maybe. I'm fairly certain a little miracle could be made to take place by mixing up some Viking taking care of the Babe, coffee from my new and fucking amazing roguishly grey George Clooney Nespresso machine (eat your heart out Starbucks, you no longer have claim to my immortal soul and/or firstborn male heir, whichever should materialize first), chilaquiles rojos, champagne followed by red wine and their after-effects, and a dash of subpar photography.
By joyously (or only slightly hung over from last night's dinner with friends) bringing you the latest 'News from the cracks of the expat bubble', the most recent 'You know you've been living in the land of true tequila for too long when..', or as I like to think of it, 'Come on touristy people, stop wearing shorts during the Mexican winter, it's fucking freezing here':
:: You meet another Finn and you do the little kiss-on-the-cheek hello, and only realize several minutes later that you actually kissed (as opposed to waving at them from across the room as is the norm) someone else who's Finnish and then wonder exactly how many million Finnish corpses just groaned and turned in their eternal resting places underneath all that snow. Because you could almost hear the creaking of the repositioning bones. And all of that undigested coffee sloshing around the coffins.
:: You immediately think the world has come to an end when, on a regular weekday, instead of gazing up at the brownish layer of pollution in the horizon, you actually see the volcanoes, Izta and Popo. Scary stuff. What? A virus killed everyone? I'm no Legend, people.
:: You instantly decode ahorita - in a little while - as really signifying 'Lady, we might connect the internet/ install the washing machine/ open the gate/ bring you the coffee when it suits us and really only when it suits us, and even then we might just forget about you entirely and never ever show up, or just pretend like we already did what you asked us to and you just didn't realize it'. And you frequently tell people you're on your way and will be over ahorita when you're actually still simultaneously drying your hair, feeding the baby, and applying mascara.
:: You really do feel that there is no such thing as 'too much chili'. Para mi camarones a la diabla, porfa.
:: You sleep peacefully through any earthquakes that measure less than 6.5 on the Richter scale.
:: You consider time spent sitting in traffic as time to do your taxes, read a good book, shave (beard, legs, armpits, take your pick), moisturize, shop at intersections for all of your various cleaning needs and/or for unhealthy snacks, floss, get through most of the levels of Angry Birds in one single sitting on your phone, and as time to either teach your bladder who's the boss or practice the elusive art of peeing in and empty Starbucks cup.
:: You bring your infant daughter to Europe only on her Mexican passport, and then upon your return home all of you automatically choose the line in immigration designated for Mexican nationals. Because one of you has a the right passport. So, it's kind of right, right?
:: You decode traffic as an excuse for being late as meaning anything from 'I got some this morning and couldn't just pass it up, whattaya a moron?' to 'I had too much to drink the night before and consequently forgot to set the alarm explaining why I have mascara and lipstick all over my face and am showing up at a meeting I'm not supposed to be attending', and understand that just saying 'traffic' saves everyone hours of explanations, because, and you very well know this, showing up on time is simply not done. Ever.
:: If you're a woman, you wear high heels even if the pavements then try to continuously take your life with their suddenly appearing holes, the size of a small vehicle, and crevices, which in reality should be called ravines. If you're a man you never ever wear shorts in the city. Sure, some snazzy running shoes and jogging pants to go out to a leisurely family lunch on a Sunday, but never shorts. Shorts make tiny little fairies (also known as Smurfs now, thanks to Hollywood) weep.
:: And most of all, if you could never imagine leaving the largest city on earth. Because it's home. For better and for worse.
Nope. They don't all wear glittery sombreros and shoot in the air during revolutions. Some of them wear panama-hats and sit in boats during the weekends.
I've been gone for a while, I know. For the past four months, I've been wandering the numerous states of Baby Land, crossing in and out of Down Syndrome Jungle, making brief forays into Diaper City (and its various smells, textures, and unknows, of which there are several more than one would initially assume), enjoying Bath-Time Circus, and spending much too much time in Breast-Feeding Desert, on my way to a much happier place known as Formula Gardens.
I have been living my life. As sometimes happens, if you don't watch out. Life will just decide for you.
It seems that I now know exactly what I will do with my life. And thus the title and the purpose of the blog seem a little contradictory to what my life has evolved into.
I have become, first and foremost, a mother to my baby, but also a mother to a child with Down Syndrome - a professional researcher, a singing maniac, a physical therapist, a nutritionist, a Mozart enthusiast, an occupational therapist, a doctor, an advocate, a speech pathologist, an educator, a chemist, a massage therapist, and many more things to help this tiny life in my (no longer exercised from lifting a wine glass, nor tanned from golfing) arms take off and prosper. To help her lead her life, instead of having to always follow someone else.
So like any other mom, just with an added twist of a specialty, and a little more active raising of my daughter thrown in the pot.
But does my full-time specialty motherhood have to signify the end of this here blog? I don't think so. I think it should be a sign to make a change, a divide, a spin-off, a new blog dealing with all of the sprinkles that get willy-nilly thrown on the cone when the cone has a baby cone with an extra 21st chromosome.
Another blog? (And what's with the ice-cream metaphors?)
Yes, I think it has to be so. (No idea.)
See, not once have I been sad or needed support because of the little something extra in my babe's karyotype. I haven't needed comforting (I got my firstborn out of the deal, didn't I?), or for someone to tell me it's not my fault (any idiot knows that babies with Down just happen, as a quirk of nature, right?), or for encouragement on this 'difficult road I've chosen' (Yes, I chose not to abort, but I didn't choose for my babe to have Down Syndrome, so what exactly are you referring to anyhow?), or for anyone to tell me what a saint of a mother I am (because I'm not. I'm pretty sure babe's first word will be 'fuck' and it will be horrifying to everyone and completely my fault [but I also hope that babe, without being asked to, will always give love to the homeless and will also then reap credit for that]).
I have been very overwhelmed by the difficulty in finding decent information (especially some that isn't the complete opposite of some other information) in a situation where the state or the government isn't in charge of what happens in regards to my babe's care and education (yes, we're still living in Mexico), a little put off by how easily God makes an appearance in discussions about Down Syndrome and deciding to have a baby with Down Syndrome, somewhat mystified as to how uneducated most some people, even some very close to me, are regarding Down Syndrome, and how awful and untrue the prevailing perceptions held by many of people with Down Syndrome are.
So I think I have to change the world. One stupid, fucking stereotype (read: one wrong impression) at a time, and for that I'm going to need a whole other platform, one that will involve a lot more preaching, a little less swearing, and a lot more love.
For this little individual who is, and always will be, my daughter. My Vikinga babe and her three 21s.
I'm sure the biggest issue on every new parent's mind on the day their child is born is: "Now, how do I keep this little life from being extinguished?" This thought is bound to rise to the surface as they yank the baby out and amidst a lot of crying emanating from several different people in the room hand the little bundle to you, or, as happened in my case, yank the baby out, rush her away, briefly rush her back in swaddled, stick her right up to my face while I'm still 'attached' to the operating table and unable to move (I kid you not, I think they thought I was one of those patients who would bolt up in the middle of it all to check out exactly how much of the wildly growing bush also known as my pubic hair they'd had to shave off, or, you know, just to see what exactly was going on with all that blood and stuff), let me briefly to try to focus on a palish blur with what could have been eyes right by my left nostril that's not saying a thing (the baby, not the nostril), and then whisk her straight into the NICU.
Still. There was that thought: "She's out. Now what?"
Well. I was lucky. In my case the NICU kept my little one alive for the first four days of her life, which I thought was only fitting since my womb (really the zombie-placenta) hadn't really been up to par until then. They let me see her, but, to be completely honest, I didn't change a single diaper until they sent her home. I was gloriously responsible for such important things as having warm hands to cuddle her with twice a day and getting enough sleep to better take care of her once she came home.
And then, to our utter bewilderment, she came home. After four days in intensive and intermediate therapy in the NICU.
They just let us take her. In a carseat much too big and with me having to hold her tiny flopping head on the ride home. She came home with us.
None of the complex and scary doctors' predictions of her being unable to control her body temperature or lacking or only having a weak sucking reflex because of the Down Syndrome, of her not being able to breathe on her own because of being so tiny and premature, or of her having some or other health issue, came true.
She was heavier and longer anyone had expected. And also possibly louder.
She was and is mostly fine. Maybe a little floppy once in a formula-induced coma. A little constipated (hopefully because of the formula and not because of something wrong with her bowels, but we'll see). Fairly disinterested in mom's boobies and really enamored by the bottle with the quick-flow nipple (the polar opposite of both of mom's nipples, which seem to be supporters of the slow food movement). Checking out the world with dark, dark blue eyes, much like her mother's. With reddish, and thus utterly Viking-reminiscent hairs on her tiny head. Generally smelling good and sweet. With long fingers and feet two sizes too big for her scrawny frame, but with 5 of the appropriate appendages on each hand and foot. All covered in beautiful, clear skin.
And she's ours.
Which probably explains why we panic and let our own special kind of insanity rule. All the time. About everything.
:: So far I've told the on call pediatrician at 1am on a Sunday in very questionable Spanish that my daughter "won't eat, but that I myself have been pooping all day long" and that I'm afraid "she will run out of water." He was very gracious about my supposed bowel movements and only coughed the tiniest bit.
:: I have practically tackled a security guard at my building because she dared to cross that boundary, also known as 'Don't you frikken even breathe in my precious babe's direction', I had mentally created to keep her safe from general harm, dragons, and traffic. In my defense (Or not, what does this have to do with anything? Who the fuck knows? Mommybrain. Ya.) she had gold teeth.
:: I have scared the poor, innocent (And new. Yes, again.) maid so that she now considers two car lengths away a safe distance to gaze at the baby. And then she hesitantly waves from over there.
:: I have become the queen of antibacterial soap to such an extent that every time I put my hands in my pockets my knuckles bleed.
:: I have tweeted and Facebooked shamelessly about my difficulties in breast-feeding, particularly the area of my sad, sad production. It seems my boobies are no longer just mine, but more like an appliance. A broken one at that. And I think the blogosphere deserves to know too. So there. Boobies - broken.
:: I have slept around four hours in total since returning from the hospital. She won't stop breathing if I keep staring at her, right?
:: I have taken more than a thousand photos and videos already, and I'm completely and utterly unable to delete any of them. Not even the shortish video I accidentally made of my own knee while waiting to get access to the NICU.
:: I have fallen irrevocably in love. With my daughter and with my family. And now know for sure that this is truly what I will ever do with my life. I'll be an off-kilter, broken-boobied, Viking-outnumbered mom to the sweetest thimble-sized human being on earth (Yes. Because she's mine.), and wife to the bestest dad ever (Regardless of his sub-par diaper-changing abilities, which, time and again, lead to pee puddles all over the place).
A child of a global world, originally from the land of Santa and cell phones, married to a bona fide viking, and attempting to raise a loud little life who has Down syndrome, all the while getting used to the US Pacific Northwest after many years in Latin America and Africa. Against all odds the kid's first words turned out to be 'mom' and 'book' instead of 'fuck' and 'no'. That may well turn out to have been my finest parenting moment ever.