Monday, December 10, 2012

How to make my Christmas:

I realize I haven't blogged in a while, so I sit here staring at my laptop screen and try to come up with something that wouldn't just be a repeat of the previous posts.

It's hard. It gets harder every day. As Babe grows it gets tougher and tougher to write about anything else but you.

Yes, you. The world. The people in it.

You, and not my daughter, are the reason for this blog. As Babe gets older and develops and becomes her own little person (with a not-so-little or contained person's personality) my mind revolves less and less around Down syndrome. I see her as different, yes, but I see everyone as different, and regardless of how other parents feel I don't see her as any 'more different' than others. I just don't see it. I don't. Honest.

I see her daddy's chin and easy smile on her, I see my own impatience in her demands, I see her musicality, her freakish sense of rhythm, her first encounter with the christmas tree, her empathy for crying babies, her excitement at the piano, her slightly broken crawl, her smiles and screams, her quirks and her new pink glasses. Just her.

And then someone reminds me that she has Down syndrome. Instead of the usual 'how cute' we get the 'my cousin has Ds so I have a special place in my heart for kids with Ds (I'm making this more correct instead of quoting accurately, but I just can't bring myself to not use people first language). Someone names their cat 'Tard'. Someone uses the words 'retarded', 'mentally deficient', 'mentally challenged' or something of the sort as an insult, to signify something that is slow, broken, or of lesser value, and I find myself acutely reminded that I need to remember that Babe has Down syndrome.

Because if I don't, and I forget to teach her how to tell the world, diplomatically and not, to fuck off and let her be her own person, some of the world might just sneak up on her and make her sad, or worse yet, not give her a chance at living her life the way she wants to.

I'd never be able to forgive myself.

My biggest worry for the future is not whether my kid will learn to walk, talk, drive a car, or find love, it's whether the world, you, will give her a chance to try. Instead of seeing her as a representative of 'those with Down syndrome'.

Her farts smell like goat's milk and salami, you know.

If you steal my photos, creepy Brazilian, I won't post any more of Babe.

Sunday, October 28, 2012

In which I say 'my kid's a frikken individual' in 21 different ways

There are quite a few things I wanted to write about during this month of October - the Down syndrome awareness month. There are many things I would like for people to know, to understand, about Babe, about Down syndrome, and about Babe having Down syndrome. There are so many stereotypes and so much outdated and even completely and utterly wrong information about Down syndrome and people with Down syndrome out there that there aren't enough blogs or posts about it to almost even begin to make a dent. So I really should do my part, to better, and certainly more often, be that tiny stream of facts and tidbits flowing towards the great ocean of correct information.

But I've been living instead. Our little family of three has been enjoying life and our new surroundings of Seattle, Washington, learning to exist at sea level without needing to know where the oxygen tank is at all times and how much O2 is left in it, and buying rain gear and learning to wear socks (and not just in sandals) again. Babe has gotten to know Seattle Children's Hospital pretty well, I've managed to get Babe's Early Intervention services started, and Babe's been busy making new Danish, Finnish and American friends just by being her usual hollering (and I do believe she has discovered yet another level of loud) self. The Viking's been hard at work in his new and exciting position, and we've even bought a house. Well, almost, we're still on planet escrow (which really should have more wine on it, but I digress).

So while I have thought about Down syndrome, I've also thought about paint colors, rubber boots with houndstooth pattern on them, furnaces and air ducts, swing sets, doing yard work, finding a hair salon edgy enough for my needs, fall colored leaves, Starbucks, whether a Mexican Costco membership counts in the US (it does), lead paint, playgrounds, home inspections, Gymboree music classes, gutters, driving according to the rules of the road, and many more mundane and grand things.

Life.

That certainly does not revolve around Down syndrome.

So here they are, 21 quick facts everyone should know about Down syndrome, so that I can go back to looking at color charts and the new Land of Nod catalogue:

1. Down syndrome is not a syndrome. It is a genetic condition arising from having three copies of the 21st chromosome instead of the more common two copies.

2. Down syndrome occurs randomly at the frequency of around 1 in 691 births and is the most common genetic variant.

3. A person with just Down syndrome is healthy. Down syndrome is not an illness.

4. All people with Down syndrome are individuals with unique personalities and full emotional repertoires.

5. A person with Down syndrome is always a person first, not a Down syndrome child, a Down, or Down syndrome. They have Down syndrome.

6. Down syndrome is neither mild nor severe. Different individuals have different challenges and are equipped with different strengths and weaknesses.

7. A Down syndrome diagnosis is not a reason for condolences. Having Down syndrome is not cause for pity.

8. individuals with Down syndrome are capable and once they become adults they should be treated as such. People with Down syndrome do not stay children forever, nor are they like children as adults.  

9. People with Down syndrome are not angels, special, or in any way 'sent here for a purpose'. Down syndrome is biology.

10. People with Down syndrome can date, have sex, marry, go to university, have jobs, pay taxes, break up, get drunk, divorce, make good and bad decisions, and learn (or not) from their mistakes.

11. A person with Down syndrome can be as perfect as the next person. Down syndrome does not equal 'less than'.

12. Down syndrome is not something to be fought, eradicated, or in need of an ass kicking, it is present in every single cell of the individual.

13. Bringing up a child with Down syndrome does not require special skills any more than bringing up a neurotypical child does.

14. Down syndrome is not an excuse for bad behavior and it is not a reason for allowances. Down syndrome in itself is not the cause of any kind of behavior.

15. Down syndrome does not make an individual ugly, nor does it make them beautiful. It doesn't make them anything.

16. People with Down syndrome are not "too stupid to understand" when they are ridiculed.

17. Individuals with Down syndrome can be valuable and productive members of their communities as long as they are expected and given the chance to contribute.

18. People with Down syndrome are not a burden on society unless they are made that by lack of fair opportunities and expectations.

19. Down syndrome is not a subject to be avoided. Questions are good, ignorance is bad.

20. Down syndrome is no joke, but it's not a sentence either.

21. A baby is a baby is a baby. A child is a child is a child. A person is a person is a person.

Life already comes with challenges, like Mittens, don't make it harder by being ignorant about Down syndrome. 

Wednesday, October 17, 2012

On beauty

Different.

That's the word most people (usually the ones who wish to be kind and compassionate) use to describe my daughter, to describe people with Down syndrome. That is the word most parents of kids with Down syndrome use to describe their child. There is a movement called 'more alike than different'. There are blogs and pamphlets filled with analogies that all draw from the idea that one measly chromosome in the complex, intricate medley that is a cell is a big enough divider to make a person different from 'the rest of us'.

Now, I have no problem with being different. I like difference in everything. I like unique. I like variety. I like change.

What I do have a huge honking problem with is the assumption that 'the rest of us' are all so much the same that we can become the sea of poppies in an especially annoying gardening analogy while a person with that extra chromosome becomes a daisy, or worse, a (albeit beautiful) weed.

Well, I'm no poppy, and my kid's no daisy. I'm not more alike with my neighbor than I am with my kid. My best friend's kid is not necessarily more like her than my kid is like me, just because of an extra chromosome.

We are all different. We are all unique. The extra chromosome should not divide between us and them, as shouldn't race, religion, gender, sexual preference, nationality, language, length of the middle finger, or internet search engine preference.

What is seen as disability in today's world seems to be the last accepted other (as popularized by Said), reminiscent of the previously accepted others - one's sexual preference preceded by the color of one's skin. During my studies of American slavery I remember reading pages and pages of descriptions of the 'negro', and the 'savage'. Ideas and generalizations I thought had been left in history, but which keep returning to me when ever I decide to read yet another 'description of Down syndrome'.

I'm not going to tell you that children with Down syndrome are beautiful. That would be like saying that all blonds are stupid, people with Down syndrome are always happy, or that Trekkies are all smart. All I'm saying is that my kid (with Down syndrome) is beautiful, and that I've met quite a few people with Down syndrome who are beautiful as well.

I do wish to show that my kid is beautiful, in case there is someone who thinks that just because she has Down syndrome beauty is somehow beyond her reach. But that's as far as I'll go. 

Like snowflakes we are all unique, all different, and like snowflakes we are all the same. How's that for an annoying analogy?  


This is my child, and she is beautiful.

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Bloghopping with Down wit Dat in May 2014 with an oldie but (an under-appreciated?) goodie post. 

Saturday, October 6, 2012

October's the new pink

October rocks. October is important. October is wonderful.

And October has arrived.

The month of October now means more to me than any other month. "Is this because it is the official Down syndrome awareness month?" you might ask. And my answer would be that that's part of the reason. Of course. Naturally. I want to educate and advocate and make this world a better place for everyone, especially those with trisomy 21. For Babe.

Duh. Goes without saying. (although apparently also goes without blogging - something I'm working on changing...promise. Swear?)

However.

This is the month that last year was looking unprecedentedly bleak and scary. I was in and out of the hospital and seemed to be spending way too much of my time chatting to ultrasound technicians when I clearly should have been googling the offered colors of a specific stroller to stop the Viking from acquiring a baby-blue one that the sales people in the store convinced him was 'grey' for our bundle.

But we didn't know if she was going to make it, so while I spent a lot of time on the internet as I was lying on our living-room couch, I wasn't looking at strollers, or figuring out how to make my own diapers, overdosing on pink cuteness, or looking into how to make the milk come once she was here, or filling out a registry for my Baby Shower.

I was reading up on rapid placental maturation, the point system they use to decipher level II fetal ultrasounds, the functions (and sudden failures) of fetal shunts, emergency c-section procedures vs. planned c-section procedures, and NICU stays. I was also desperately looking for others who had gone through what we were going through and come out in the other end with a little screaming infant in their arms, one adamant to stay on this earth.

Silently willing any good karma we ever had coming to becoming two of those people.

So that would make October Babe's birthday month. The month of 'the best thing that ever happened to I and the Viking'.

On Thursday babe is ONE. And we're still two of those people.

Yes, there have been health issues, there have been developmental delays, there have been illnesses and even big scares, but Babe's rising above all of that and making her unique personality, accompanied by a set of lungs that make you doubt she could have any issues with breathing, known to the world, especially that part unfortunate enough to reside directly next door or above our current lodgings.

The Babe hollers, smiles, laughs like Nelson from Simpsons when bounced just the right way, loves music and soap bubbles and dancing, babbles in a mixture of languages infused with one created by herself, throws stuff, blows raspberries, gnaws holes in things with her four teeth, expertly backs up her crawling track but refuses to move forward, and makes whoever comes into contact with her fall in love. Even with snot running down her top lip.

Simply by her loud and wide presence in the world she herself makes people aware that Down syndrome is nothing to feel sorry about. It's not a defect. It's not a hindrance. It's not less than perfect. It just is.

EL GRITO by the Babe. 

Happy Down syndrome awareness month and Happy Birthday-month Babe. I don't know what we'd do without you in our lives. It would be a lot more quiet for sure.

Tuesday, July 31, 2012

Don't just stare, ask me about Down syndrome

In two weeks Babe will have spent 10 whole months with us. A lot of the time it seems like I blinked and she tripled her birth weight, sat up all of a sudden, and bit me with her vampire-fang. Other times it feels like this is the way that it has always been, like I can't even remember my life without her here.

I guess that's what happiness does (even to a slightly wine-marinated) brain.

And believe it or not but in those almost 10 months, apart from a few additional doctors' visits, a routine of exercises, some directed play, and a few hours of chatting with a physiotherapist every week, we haven't really been affected by Down syndrome in any way.

Other than on the level of thought.

I haven't blogged about Babe, her meeting (or not) her milestones, her strengths, her weaknesses, her likes, or her dislikes, because there just isn't much earth-shattering blog-worthy anything to report. I'm not going to blog about something I wouldn't want to read myself. Babe's a cool little being. And oh so special, but pretty much so just to me, her dad and her Mummu and Pappa and maybe a few other closely linked folks. That's it.

No one wants to know how much I freaked out when my toothless little sidekick seemed to sprout two sharp fangs overnight and then - believe me, this is the only way to describe it - endeavored to join team Edward as one of the key players.

That would be boring. Reading about other people's kids as if they're the first one to ever have done anything for the first time usually is if you're not the parent or at least somehow connected. I get that. Even when milestones matter 'more' and are sometimes first met after a grueling game of practice, patience, blind faith, and a little bit of desperation.

So I blog about us (Duh. I'd want to read about me, wouldn't you?). How having been made part of this 'Down syndrome community' has affected us.

How we feel about it all. How being part of a 'community' in which the only uniting factor is one extra chromosome can be the coolest thing ever because you will find people who think more or less as you do (the cool way, obviously) that you would have never connected with if it weren't for that variant of 47 (incidentally, 'Variant of 47' will be the name of my tambourine/ gypsy band that I'll kick off once I get sufficiently stocked on tambourines/ gypsies, don't steal it), but also be extremely hard when something you strongly believe in and have advocated and fought for gets shot down from within the 'community'.

Yup. There's something specific on my mind. Something that seems to divide many opinions. Namely, how exactly to feel and act about those not part of the 'community' when they are talking of Ds or people with Ds (usually your kid) and resorting to generalizations, making marginalizing comments, reducing the person to their diagnosis, or just speaking without really thinking things through, but not being mean or nasty. Just misinformed and thoughtless.

There are those who are simply not bothered by the 'positive' (always happy) stereotypes, those who will try to divine whether the commenter means well, those who will attempt to understand where the person is coming from and what their motives might be, those who like to shrug off, redirect, and avoid confrontation, those who give free passes to people who 'grew up in a different time' or 'have a different background', and those who want to avoid alienating potential allies.  

Clearly, I'm not one of those people.

I'm not a fan of confrontation for confrontation's sake (although I'm sure my mother would disagree), but there are certain things I just cannot let go. For me it comes down to what kind of a world I'm willing to settle for and the kind of legacy I want to leave for Babe and all those with any kind of disability/ genetic variant/ different ability who will come after her, and the kind of people I want her to be surrounded by and interact with in her life.

I want her to live in a well-informed world. A world that will easily see past her diagnosis.

I don't want people to just be nice to her, or about her. I want them to treat her like any other person, based on her individual attributes (On my other blog that would totally refer to breasts. I'm such a bad parent, aren't I?).

I want for the world to see her, what is good about her, bad about her, and perhaps even downright evil about her (I know I for one have more than one evil bone in my body which I'm working hard to cover with enough good to at least do no permanent damage). I want the world to see her Down syndrome as just a part of her, but as nothing that defines her.

So you see, I can't afford to settle. I can't shirk from confrontation. I can't recruit allies at the cost of correct information.

I can't live in a world that's nice. I want to live in a world that's educated, informed, and wonderfully, intricately complex, sometimes horrifying, sometimes mind-blowingly loving, and always changing and evolving.

I'm getting a few t-shirts printed that will say 'Don't just stare, ask me about Down syndrome'.

In Mexico, where we live, it's usually much more about the hair color than anything else.

What's your T-shirt going to say?

Saturday, July 21, 2012

Good intentions get you blacklisted in my hood

Our friends are awesome.

Our friends have hopped onboard this flimsily constructed barge (I thought it was miscolored, frilly panties in a tangle, but whatevs?) we call our life and are genuinely understanding, delighting, attempting really hard to never hurt, even by accident, celebrating, being supportive in the ways we specifically wished for, rejoicing, and loving us, for us, to us and with us.

We are lucky.

Our friends have good intentions. But they also have educations and understanding.

And in our world the former can no longer exist without the latter two.

The other day I saw a picture circulated on Facebook. It was a nice photo of a girl and a boy. The girl had a cocktail dress on and the boy was wearing a suit and tie. The two of them were smiling, maybe making a face, and proudly showing what I understood to be the Hook 'em Horns sign (or something to do with death metal, who really knows?). The caption indicated that they were going to their prom. The boy had Down syndrome.

I smiled. To me the picture looked like any other slightly quirky prom shot with teens posing in their Sunday best, but still being the teens they are.

Then I made the mistake of reading the comments. One should never read the comments. On anything. Because that's when the humanity catches up to your good mood and pees all over it.

Oh, apart from a few trolls who always seem to peek out from under their selected rocks (oppressive father's basement and behind a badly pockmarked face?), there wasn't anything in the comments that was especially cruel or mean or nasty. Outright.

However.

There were good intentions. Nice words, commendations, God bless yous, and congratulations to the girl's parents.

Because obviously (please note the dripping sarcasm here) the girl would never have gone to the prom with a boy who has Down syndrome if she weren't doing it as an act of charity. Because she pitied the boy. Because her parents had brought her up to be kind to those less fortunate. Because she wanted to give someone who would never ever be asked on a date the "best day of his life".

This was painfully clear to those who commented on the picture. There was no mention of who the couple was, what their reasons for going together were, or what they thought of the situation. Nonetheless, the automatic assumption wasn't that they were going together because they liked each other or were friends, which would have been the case had the Down syndrome never been evident from the picture. The instant assumption most of the commenters made was that this was a favor.

A pity-date.

That would surely secure her a safe ascension to heaven when her time came.

The boy wasn't a boy. He was just Down syndrome.  

Now, I would like to believe that they were going together because they liked each other and wanted to go together. Because maybe the boy is funny, or witty, or has a good heart, or is an awesome prankster, or is one of the cool kids, or sings like an angel, or has good hair, or smells nice, or can fart/ burp the alphabet, or can keep a secret like no one's business.

Or maybe the girl's a total airhead and no one had asked her and the boy was doing her a favor.

I would like to allow for a multitude of possible backstories, good and bad and downright implausible, like would be awarded to any two neurotypical individuals. I would like to think there's more to the plot than just Down syndrome. That there are two individuals in the photo, doing their individual things, living their individual, unique lives, made possible by their individual, unique and rounded personalities.

Please. Next time you see a person with Down syndrome, just see the person.

See the individual.

Especially if you're looking at my kid, because, in her case, I'm part of the package and I'm not letting good intentions slide. Not now, not ever.

Would Down syndrome eat Acapulco sand? 
I doubt it. 
My daughter would.

*******************************************************************************

Blog-hopping with Jen from Down wit Dat. Visit. Enjoy. Leave lovely comments. Now go.  

Friday, July 6, 2012

On being a Down syndrome superstar

Or not.

For a lot of people a way to deal with a Down syndrome diagnosis is to go online and see what all a person with Ds will be able to do regardless of the diagnosis. For many parents this is how they initially survive. By seeing that a life with a kid who has Ds isn't all that different from a life with a typical child. There'll still be laughter, laundry, vacations, snotty noses, and school graduations. Needing to know this is only natural. And vital in the place most of the parents find themselves when they are faced with a diagnosis of a disability, especially one that entails "mental retardation" as a lot of the current medical literature still calls it, regardless of there being numerous much better, untarnished by colloquial use to denote all things horrendous, equivalents.

(While you're here, why not click once [but remember to return!] and take the pledge to end the r-word. Go on!)

For many parents it is important to see that life can go on pretty unchanged, fairly unaltered, or at least to know that a diagnosis doesn't mean that they'll never take another vacation, never enjoy another juicy piece of celebrity gossip, never go on date nights anymore, or never drink another glass of wine. Especially since often an ignorant doctor or a nurse will do, in my mind, the greatest disservice of filling the expectant or brand new parents with the gloom and doom their life will most certainly be filled with from then on. Why these professionals, who should be offering current and multifaceted information and support, feel the need to do this, is one enigma I'll probably never be able to crack. Or even begin to understand.

For new parents it is important to see that everything will most likely be fine. Just fine. And that feeling of drowning will eventually pass and be replaced with immeasurable joy and happiness.

And acceptance.

New parents need to know that their kid could be one of the 'Down syndrome superstars'. That kid who will stay smack in the middle on the typical growth charts, learn to crawl alongside his or her typical peers, say 'mama' and mean it when his or her siblings did, read at 4th grade level in the 3rd grade,  and just pretty much not really differ from his or her typical peers, or more often than not perform much better than his or her typical peers.

But. I think in reality it is important for every single parent on this globe to believe that they could birth a genius. A second Einstein. A Nobel prize winner. A hero of our times. A president. A renowned actor. A celebrated composer. A prolific author. Someone who will rise above the masses and lead them instead of just following.

But not every kid is built that way. Some kids will make up the masses.

Not every kid with Ds will keep up developmentally. Not every kid with Ds will break through the ceiling and do things no kid with Ds has ever done before them.

Every kid is special, but most just to their parents. And the occasional grandma.

But that doesn't mean they are worth any less.

Real acceptance arrives in the form of the realization that a kid might never be a 'Down syndrome superstar', that there might be significant delays, and that there might not be flurries of development regardless of hours and hours spent on exercises and therapies and directed play. No sudden changes shortly after starting supplements. That he or she might not only lag in development when it comes to the typical peers, but with other kids with Ds as well.

But it also arrives in the form of the realization that still, regardless, life is fine. Just fine. There will still be laughter, laundry, vacations, snotty noses, and school graduations.

And that most days Down syndrome doesn't even enter the parent's mind.

But summer vacation does. And the sad disintegration of TomKat.

She'll always be a superstar to me. Can't you tell?

Saturday, June 16, 2012

Why my kid will forever stink of fish


I was recently told by a renowned doctor (a developmental psychologist) who sees and treats many children with Down syndrome, to stop giving my daughter NuTriVene-D, a multivitamin supplement especially streamlined for people with Down syndrome (there are some deficiencies typically encountered in people with Ds).

Naturally, I wondered why. He had previously told me to drop all dairy out of Babe's diet, which I could understand, since I too had found multiple sources linking casein, a protein in milk, to conditions in the central nervous system, where Babe's current breathing problems originate.

Dairy I could understand. Still, I couldn't see why we shouldn't give our child a multivitamin. I take several different supplements every day myself and attribute much of Babe's coming about to me taking those specific supplements (And to some degree the Viking. I'm pretty sure he was in there at some point during the conception. Let's give the guy some of the credit).

So I asked why, thinking there was some grand connection between something in the supplement and the Babe's nervous system, berating myself for not googling every single ingredient in connection with the CNS.

"It doesn't work," was his exact response.

What? Because of Babe's Down syndrome she doesn't absorb vitamins and minerals like the rest of us?

No. She does. Just like the rest of us.

They won't help boost her immunity and thus ward of infections or at least help in the recovery?

No. They might. Just like with the rest of us.

They won't help rectify a deficiency in her levels of vitamins and minerals?

No. They might. Just like with the rest of us.

They won't help in improving her overall health?

No. They might. Just like with the rest of us.

So what does he mean by 'it doesn't work'?

That they won't cure Down syndrome.

Well.

Duh.

My wish for every doctor Babe or any person with Ds will ever encounter (and pretty much to every person on the planet and/or currently in orbit above it):

See beyond the Down syndrome. Look at the unique life. Understand that the person may have Down syndrome and still be a perfect, healthy individual.

My kid is perfect and I want her to lead a full and happy life, free of infections and deficiencies.

That's why I'll keep giving her a multivitamin, her DHAs, her Longvida Curcumin, and her zinc.

And lots of love and kisses.

There is no cure, because there is no illness.

   Yes. Sometimes a raspberry is very much called for.

Monday, June 11, 2012

Happy (but not -go-lucky)


I repeat it often, to many different people, on forums, in real life, on my blogs. I declare it. I shouldn't have to, but I do.

Life is not hard. We are not in need of respite.

Instead.

Life is good. We are happy. Even overjoyed since we clearly lucked out in the family-department. There's more than plenty of love, and there's happiness up the whatchamacallit (to put it poetically). I look forward to getting up every single morning and gladly put my dripping wet hair up on a ponytail while simultaneously snorting up and gulping down my coffee. This life we're leading is what I want. What I wanted.

I'm content.


I'm complete.

And it's all true. It's not rainbows and unicorns - the problem with unicorns being that they are completely fictitious - it's just a fact.

Yes, Babe's health right now could be better, but she's not dying, so why worry? We're managing the situation (hence the oxygen tank completing our bedroom decor) and keeping an eye on it (thus the frequent blood tests for nearly veinless [doctor's words] Babe), and just loving our baby who is learning something new all the time and making us fall more and more in love with her and each other (it can be done, even after 10 years of marriage) every single day. Every single minute and second even.

This is where I want to be. Right here. Right now.

In the sun. With my daughter in my arms. Staring at a kid who either tried to kill us or show off to Babe by nearly crashing his bike into us. The Viking capturing the moment.

I hope you're as lucky as me.


Except for the knees, you understand.

Saturday, May 19, 2012

Surviving at sea (send a boat please)


Not drowning, but not swimming with ease either. That's where our family is right now. We're out on open waters, the ship finally sank a while back, and we're treading water, taking turns holding each other up, all the while the waves are getting bigger and bigger. And wait, was that an ominous fin I just saw surface over there?

And Down syndrome isn't even on the horizon. We're uncomfortably afloat on the severe Central Sleep Apnea sea.

When your child is given the diagnosis of Down syndrome you wonder (and oftentimes despair over because of the antiquated, wrong and stereotypical information the world and especially the medical professionals in it are so eager to fill you up with) how your child's life will be. Whether she'll need open heart surgery, if she'll ever get married, whether she'll be able to, whether she'll be allowed to, attend mainstream school, if she'll be able to live on her own as an adult, whether she'll have a chance at growing old, if she'll be bullied or excluded, whether she'll learn to be witty and sarcastic or just plain funny, if she'll get leukemia, whether she'll ever get to drive a car, if she'll learn to speak her mind or just to speak, and whether she'll be happy and if she'll lead a good and kind life.

And a thousand other things. Big and small. Some insignificant and others seriously life-altering. Some completely imagined and outrageous and others a reality in the future.

Then, as life moves along, there is actual stuff you need to deal with. Such as what to do with the low muscle tone, the differential treatment, the restless sleep, the developmental delays, the sensory issues, being looked at funny, the semi-constant respiratory illnesses, hearing loss, the wildly erroneous stereotypes, vision problems, people first language, and so on.

Or maybe you don't. Maybe your kid with Down syndrome doesn't have or have to experience any of the issues linked to Down syndrome, or maybe she'll have and meet many of them. There's no way of knowing.

As with any child.

Any. Child.

Sometimes the universe decides to remind you that your kid is just a regular kid. Remind you in the nastiest of ways. "Yes," the Universe will scream at your face, "she might have Down syndrome, but she's still just a kid, and I can take her down if I so desire."

Your tiny one is hit with a health problem that has nothing to do with Down syndrome. A mysterious one at that. The kind that makes you wish Dr. House was real and could crack this fucker right open. And heal whatever was ailing your precious little baby.

Rip you out of every parent's nightmare that could take over anyone's life.

Still, While you're spitting out salty water you take a look around and realize that, yes, while you are kind of fucked and that a boat passing by might be a while still, you are in fact afloat.

You are not drowning because you are so damn lucky.

You have on a fancy life vest that covers every medical expense and there's all that stuff that came off the boat before it sank that went to quality medical schools and will take your every single call.

You have that special someone treading water right beside you and not hogging the piece of floating wood like that rich chick in Titanic. You take turns.

You learned to swim early on and you know you can keep swimming for quite some time still. And the little one is proving to be an excellent swimmer.

You realize that things could be so much worse. And for many they are. And that you are so fucking lucky.

This girl loves water. That's why she's hitting it.

Saturday, May 12, 2012

A day for me? Seriously?

And not for her? WTF? 

I've never been one for labels for myself. Or, actually, I've never been one for labels that I haven't chosen for myself.

As long as I can remember I've 'reserved the right'. That's right, just reserved whatever there was to reserve as far as anything to do with my identity goes, and told everyone else telling me what to be or do to go screw themselves.

I'm easy and uncomplicated like that, you see. 

'Kay.

Now.

'Mother' as a label I chose. After nine years of marriage - during which I'd roll my eyes when anyone called me 'wife', and instead chose to describe myself as a 'trophy wife past her prime' (Ironically, I think. I reserve the right to be hipster-ish without anyone daring to call me a hipster. !) - I chose to become a mother to Babe. A mother to a child with Down syndrome, but really just Mother to Babe

She was in my belly. Kicking at several different organs.

Ă„ITI - MOR - MAMA

Mother in Finnish, Danish and Spanish.

Those are the three the Babe's currently attempting to master. For those of you wondering, the process is at AAUUUYYYIIINNNGGG+raspberry (loudly and followed by a little gagging sound) at the moment. Scientifically speaking of course. 

You'd think that after being on semi-permanent vacation/ married/ doing charity/ shoe-shopping in a maniacal fashion/ 'studying'/ reading/ teaching/ drinking far too much wine/ pretending to be a photographer/ being the foreigner for nine whole years, I'd had more grasp on what parenthood actually required and what it would really be like to be someone's mother. 

But no.

I seem to be bit of an expert when it comes to Down syndrome and parenting a child with Down syndrome (okay. Not an expert per se, but at least I know something), but plain 'parenting a little being'....

No fucking idea.  

But almost exactly seven months down the path lined with dirty diapers and Dr. Brown bottles, the Babe's still alive (high five folks, who would have thunk it?), joyfully kicking at my c-section scar (the feeling's just returning to it) whenever I pick her up, smiling at me when I sing her preferred lullaby - Mercedes Benz by Janis Joplin - to her, taking baths with the kind of gusto that leads me to believe that she thinks I might never give her a bath ever again, munching on mashed avocado as if she knew the first time I ever tasted one (and avos are on my 'I'd survive on these five foods for years in a zombie - werewolf apocalypse' list) was when I was 19 years old, smelling all cutesy and new all the time, and just generally being all happy and content.

Even with me for a mother.  

Still, I'd like it to be publicly considered that I no longer have a high-maintenance multicolored mohawk, but an easy to do ponytail friendly do instead.

That has got to count. Like a lot. 

I think I deserve breakfast in bed. You know, for no one dying before their time and child-friendly hair. 

Just saying.

Mothers rock. Word.

Monday, April 30, 2012

The Blond Voldemort and a Handful of Fairy Dust


If I suddenly turned into a bosomy (I wish) and blond Harry Potter (or, which is much more likely, a rather benign and far nosier but still blond, Voldemort) would I take away Babe's Down syndrome?

Removius Chromosomius TwentyOneous

Poof! Tinkle, sprinkle fairy dust. A whirl of bluish smoke. A sparkly explosion.

And Babe's a neurotypical child.

But would she still be the Babe? My Babe. Our Babe.

This is something many in the Down syndrome community have pondered before me and will ponder after I'm done pondering. And lately, for some obscure reason, it's something that seems to have been on many parents' minds (although likely not involving such rampant misuse of anything created by J.K. Rowling).

And while it'll always remain a hypothetical scenario, it's an interesting one.

There are two different answers, but the grounds for those answers are as many and as varied as those answering. There are also many who vacillate, those who'd only remove their children's health concerns related to their Ds, and those who refuse to take on such an unrealistic question when there are so many real concerns, sources of absolute joy, and everyday small things to face, experience, weather, sort out, and enjoy.

And then there's laundry.

But luckily, there are also coffee, wine, and chocolate. Or so I've heard (about the chocolate, I'm addicted to well aware of the other two).

But what about me?

Given the above scenario (with cooler and less wizardry wardrobe, I hope), would I take away Babe's Down syndrome?

No. I would not.

She is who she is, who she was, and who she will be, and that chromosome has a part in that and without it, she would be a different person. Simple as that for me. I'm all for being the person one really was born to be, what's in a person's cells, what the person is moulded into by his or her environment, and I wouldn't change anything about the Babe even if I could.

Why fuck with perfection?

No, let's not get into a discussion about my questionable skills as a parent and how much that actually already has fucked with the perfection that was given into my care at the hospital nearly seven months ago.

Let's just...not. Thanks.

There are a couple of things that have bothered me about this discussion though. Well, one thing really.

No, not the 'God has blessed us with a special child' thing. That'll be a whole other post later on, when I really feel like yet again taking on Christianity. You know, as one does every so often.

In many discussions of this question that I've come across, I've also encountered a built-in, assumed, or implicit perception that a child with Ds is somehow a down-graded, or a challenged version of what he or she should be. That there is a certain kind of normal that, if it wasn't for the Down syndrome, that child would have a better chance for attaining. That Ds in itself is a challenge to be overcome. Something to be beaten on the road to normalcy. 

And here I was thinking comparisons of personal journeys were moot. That it was what you did with what you were given that mattered. That you tried to reach your full potential.

That there were about 7 billion different normals with more being born every day.

Now, there's a good chance yet again that I'm swimming in something other people cannot even see? Happens.

So tell me. What do you think?

Calm and collected. Reaching some serious potential.

Monday, April 23, 2012

Titanium and how more people should be made of it.


MRI

That's what's on the agenda tomorrow morning for us.

Breathe in. Breathe out. Big, calming breaths Extranjera.

As much as I want answers to what the hell is going on with Babe's dangerously dipping O2 saturation readings whenever she's asleep, the general anesthesia required for this study, especially since half of the kiddos with Down syndrome have adverse reactions to it, scares the shit out of me. There's a huge knot, possibly made up of coffee and eggs that accidentally boiled for 25 minutes yesterday, in my stomach, and even a worse jumble of assorted scary scenarios floating around my poor, addled, sleep deprived brain, also made super 'alert' by indecent amounts of coffee.

I'm not scared, but I'm not far from that edge either.

See, we thought the caffeine we're currently giving Babe (doctor's orders, unlike in my case, and equaling the amount of caffeine in about a liter of Coca-Cola), would make the central part of the apnea all better. Leaving us with something much easier to handle. Something to manage.

Or at least have some sort of ameliorative effect on the frequent 'episodes', which we know are there, although we can't actually see them.

This was going to go away and Babe was going to be on her way to healthy again.

But there has been no change.

Neither us, nor the doctors, know what's going on.

Every parents' nightmare.

My life. Universe testing the titanium.

Figures.

Monday, April 16, 2012

Words matter

There is a preferred language guide to talking about Down syndrome. Please check it out and if you're not already complying, please change the way you speak. Thanks.

It might not be (and isn't) a big deal to you, but many of us parents of children with Ds really care.

Our kids are kids first, and that extra chromosome is only a tiny part of them. They're all unique individuals with distinct personalities and life paths. In reality, there is no 'them', there are just children.

No one told Hoda and Kathie Lee on the Today Show though. Ugh. Not even the person they were interviewing who is billing herself as a kind of a spokesperson for the Ds community (although, she certainly does not speak for the Babe). Unfortunately. But she has a book and stuff to flog, so why would she make waves?

Because words matter.

You can't, and definitely shouldn't, always give people 'the benefit of the doubt', or let things slide because you believe that their 'intentions' are good, or that their 'heart is in the right place' (let's face it, often that place is pity, which is not right, or needed). Someone wrote on a Ds forum I read that a nurse actually compared her child to a loyal dog. While I understand that not all people are as explosive as me, that would have sent me through the roof and on one of those verbal rampages I usually reserve for airlines and people not in the position to spit in my coffee (wait staff tends to be safe, that is). Just because the person's intentions are not mean, it doesn't mean that they are not drawing from a damaging stereotype and shouldn't be made aware of this and educated.

Everyone can always use a little more (or better and more correct) education. Myself included. And most definitely a philosopher from Roskilde University who apparently believes that the Danish society's resources should go to 'children who can be the best possible children.'

WTF and OMG combined.

Too bad the Danish society's resources went to educating someone who clearly is not educated enough to know that while he may understand Aristotle, he is sorely lacking as far as defining 'best possible' goes. I'd extend an invitation to him to come and see just how perfect the Babe is, but he's from Roskilde University and having attended said university for a year (before promptly transferring to Copenhagen University for an education), I don't think he'd be open to debate that's not just debate for the sake of debating, and I can imagine why he might have felt he could speak on something he has no knowledge of. On the national radio.

According to him, people with Ds have shorter lives and therefore it's understandable that people choose to not bring a baby with Ds into the world. Really? Is this now the measure of worth? The potential length of one's life? What about those kids who turn into rapists, murderers, and reality stars? Maybe it's just me, but I haven't heard of that many people with Ds who that has happened to, so him only pitting a person's with Ds (or an alcoholic's, cancer-victim's, smoker's, where do we draw the line?) 50 years (very, very antiquated information) against a potential rapist's or anyone's 100 (Really? Everyone who doesn't have Ds lives that long now?) just shows that the issue is a tad - understatement of the year - more complex than how he frames it.

Words matter.

These arbitrary little sounds (or squiggles) we use for the best thing being human has to offer - communication with others. Nuanced interaction. Humor. Affection. Sarcasm. Admiration. Snark. Respect. Disgust. Advocacy. Compassion.

Keeping stereotypes alive and well.

Or tearing the world a new one so that our children (yes, all of them, even the ones with only 46 chromosomes) can exist in it as equals, or at least make their own worth without having nasty generalizations impeding them.

While not many will ever question a verbal rampage of mine when the stereotype is 'negative' (overweight, stubborn, slow) the 'positive' ones (always happy, content, mellow) are just as damaging in my opinion, and those are the ones we ought to kill with kind, educational words.

Because words matter in my child's existence.

My child is just that - my one and only, unique child. A little person with a very much her own thing going on.

My child is not a gift because of an extra chromosome. She is not a blessing because when she was conceived an extra chromosome tagged along.

She is special to the Viking and I because we made her. Intentionally. And then chose to keep her gestating.

She is not 'a Down's baby', and she most certainly is not 'Down syndrome' or 'a Down'.

She has Down syndrome, but she also has orange-y hair, fingernails that chip easily, a cute nose, constipation when she eats too much banana, a good smell, a persisting bald spot where I unwisely hacked off a lock of her hair for her 'This is Me' book, a love for water, an utterly disarming smile, the cutest belly button, and a normal life.

Not typical, but for sure normal. And just frikken perfect for us.


I know. No need to say it twice. I'm frikken PURR-FECT. Yup.

But don't just believe me, I'm just a parent of a cooing-babbling baby, believe adults with disabilities.

People First

Self Advocates Becoming Empowered (look under the statement on the 'R' word)


***********************************************

Now also bloghopping with Jen from Down with Dat:

Sunday, April 8, 2012

Easter schmeaster

Today we actually went to a kiddy Birthday fiesta turned an Easter egg hunt. With the oxygen in tow, but nonetheless.

Too bad for the Babe this is the closest she ever made it to any of the sweet chocolate hiding in the eggs:

If you look closely you can actually see she's holding a yellow easter egg. I swear.

It was nice to get out of the house a little bit, see some friends, verbally relive the horror that was the hospitalization, discreetly down a couple of white wine spritzers meant (a huge honkin' canister - I choose my crowd wisely, you see) for the exhausted ones, and it seemed like the Babe was totally into seeing the other kids color eggs, hunt for some in the grass, and then maniacally either cry or run circles around everyone and their shadows on one mother of a sugar high. Or at least that's what I'm telling myself about the Babe. To relieve my fear that I just might be bringing up a little princess completely in love with her own face in the mirror (she's began giving herself open-mouth kisses in the mirror when ever she has the chance). Buuut... In fact, she's just kissing her best friend. Another baby. Yup. Uhhuh. Yes.

I really must find a playgroup right away. Preferably one with white wine spritzer. But I'll take one with tequila if necessary.

Easter, people! 

Thursday, April 5, 2012

Apples (but no oranges)

Sometimes, when things look like they just sneaked into the toilet, hopped into the actual toilet bowl, reached out, and tried to flush themselves into the deepest and darkest of the sewers of Mexico City (and any sewer of Mexico City must be a frightening thing indeed), it's probably best not to dwell, lest one be completely covered in excrement, and turn around and find some prettier, sunshiny crap to stare at.

So we decided not to dwell on Babe's continuing saturation issues, the incredible severity of her central apnea, the staggering number of times we could have gotten up in the morning to find her dead in her crib, and the fact that we might be headed for an MRI to find out what's going on, and then still not be able to do anything about the state of things but hope she grows out of at least some of it. Because dwelling on all of that would mean that I'd might want to follow the aforementioned things and join them in the shitter, and, well, that would just be sad.

Little fairies weeping. Choking on fairy-dust snot.

So we did solids. For the first time ever.

Instead of finding kittens hanging on stuff on the internet, we went for apples.

Apple puree, in fact.

Mind you, not the easiest feat to produce from raw apples since Mexico City had earlier this morning decided to cut off the water supply, because, you know, no one of any importance (hrrmph, screw them, I too am special) would be in the city (granted, a city desperately running out of water and having serious issues replenishing the reservoirs) over Easter.

But thanks to the wonders that are our rented microwave, our shiny new blender, and some sparkling water, we managed.

Drumroll, please.

The end result to make you stop dwelling on shit too:

Apples! And a spoon! Frikken awesome!

Ugh. The paparazzi. And while I'm stuffing my face too... 

Wednesday, April 4, 2012

When things go wrong

Shitscapes.

I don't exactly know what that means but I've sure been saying it a lot lately. It and plenty of other increasingly R-rated things. I've cried, laughed, been scared out of my wits, been okay with things, and then taken yet another dip in that pool of not knowing what the fuck is going on and why aren't there any fucking answers.

And it has nothing to do with Down syndrome.

It's just life.

But where to begin with a touch more coherence?

The Babe got sick as kids do. She coughed. She may have wheezed and rattled a little.

So we took her to the doctor.

The doctor said that Babe's not doing so well, that she should be admitted to the hospital. Something about her saturation not being so good. So we went to the ER to wait for a bed in the pediatric ward. This was a little kick. We'd just expected to get a prescription for some antibiotics or cough syrup and be on our way. She'd played so nicely in the car too.

We waited in the ER. We chatted. We updated Facebook. We played with the Babe. We fed her. She fell asleep.

And then she almost died.

She turned blue, her lips were purple, and she practically stopped breathing.

Let me tell you, I hate writing this. No one should ever have to even think this. Or worse. I was so scared and panicked those two words now signify something completely new to me. 

But she came back. She didn't want to go.

After two separate hospitalizations, for first 9 and then 6 days, she's getting better. There's nothing that can't be fixed. The neurologist assures us her EEG looks normal and that there isn't any permanent damage from the hypoxia she suffered. But, there is a flurry of diagnoses that contributed to this. Or that were made in the process of finding out what is going on. Some of them may be linked to the fact that she has Down syndrome, but even then there's only a slightly elevated 'likelihood'.

She had viral bronchitis.

She has pulmonary hypertension, severe mixed apnea (central and obstructive apnea), a patent ductus arteriosus, a patent foramen ovale, and reflux.

And right before we were discharged she had a serious bout of stomach flu. In which I and the Viking also partook.

Still.

What really matters at the moment is that she is breathing on her own most of the time, and only needs a little help while asleep.

Everything that I previously thought was in perspective has been torn to the ground and is completely under construction.

But we survived. Life goes on.

It is good that when my parents made me, they made me out of pure titanium. Otherwise, there's no way I'd be able to be anybody's mom.

Responsibility and love, oh how they haunt me.

She is perfect.

Friday, March 9, 2012

Not pretending, ignoring, or embracing, just keeping in mind


Lately I've been reading some blogs written by parents who also have children with Down syndrome  (okay, the usual ones about therapies and resources and such, but also Kelle Hampton's blog - Enjoying the Small Things - which really isn't about life with a kid with Down syndrome, but just about her life with her two daughters one of whom has Ds) and pondered about this whole deal about not letting Down syndrome define your life, or who you are.

And I agree. Kind of.

But.

I don't want to pretend like the diagnosis isn't there. Like we're a typical family with a typical child (she's normal, just not typical). Because we're not. Never have been. Not even before the Babe came along. Down syndrome is just one more tangle in the frilly yet oddly discolored panties we call our everyday life.

I would hate to, even for a second, forget what it means to have a child with developmental challenges, and not give her the aggressive stimulation and help she needs to move forward on her developmental path (So that the world may later not see that she ever had those challenges). Even as I sit here on my bed with the MBP warming my loins, writing, I'm constantly glancing at the Babe, no longer to make sure she's breathing alright (that only happens at night, all the time), but to make sure her mouth is closed, she's breathing comfortably through her nose, and that her tongue is securely positioned completely inside her mouth. Am I being vain and don't want her to grow up and have that open-mouth-with-the-tongue-sticking-out thing very much associated with Down happening? Not really. I couldn't care less if her mouth was constantly open and her tongue stuck out - that's just looks - as long as it didn't also imply difficulties in communication later on, in producing speech. Just check out this article: The Oral-Motor Myths of Down Syndrome. (Poor Babe though, her mom is the worst mouth-breather ever, so she's got that going against her...)

Let's face it: If people have a hard time understanding what you're saying, they really can't be bothered to listen. Or worse, they're going to think you not only have difficulties in producing the actual speech sounds, but that you cannot communicate on the level of ideas and concepts either. And I'm fairly certain, since she has me for a mother, there will be sufficient ideas and concepts in the Babe's future. A veritable flood of ideas. More than enough. I would imagine. And she'll probably feel the need to spread them too. Aggressively, and with some poignant swearing here and there.

If she's anything like me.

I don't want to live my life ignoring something that cannot be 'cured', 'treated', or done away with. There's no ejecting that extra chromosome from every cell of my tiny daughter's body. The chromosome is there. It's a part of her and always will be. It is a part of the genetic puzzle that makes her... her (just with a healthy dose of that dubious thing called nurture thrown in also). And most of all, it has already given her some specific features which tell everyone she'll ever come in face-to-face contact with that the chromosome is there. She'll have to know and understand that the chromosome is there and that it is the reason people will sometimes act funny, or mean, or patronizing, or overly friendly and sweet around her, and not because of her.

But I'm not embracing Down syndrome either. I am making it my thing, but my things also number coffee, wine, and Angry Santa who's Finnish, so there. Recently I've been ordering a lot of Down syndrome merchandise. Soon, I'll be up to my knees with tops for myself, the Viking and the Babe that say 'Chromosomes - my kid has more than yours', 'Syndrome of a Down', 'Got Trisomy', 'Down Syndrome - Support, Educate, Advocate', 'Celebrate Neurodiversity' and the piece de resistance, something that I designed myself (but truly doubt I was the first one to come up with it) 'I don't discriminate. Even if you only have 46 chromosomes.' I'll wear every single thing I can fit into, and will do so proudly. But I'd never, ever wear a top saying 'My daughter is cool because she has Down syndrome.' I mean, come on! I'm sure my daughter will be special (as am I, it's only the Viking's true specialness that's ever been in question, although he does like his beard a little too much and insists that his freaky toe is nothing out of the ordinary, so...), but we're still waiting to see whether that little something that will set her apart will be her dry wit (fingers crossed), infectious laughter (or possibly my loud one that makes people turn around in a crowded restaurant looking for the drunken sailor), tendency to feel passionately about things and make others do so too, love for those who don't really get any love otherwise, singing voice (this one's a stretch, all things Viking considered), sense of style, or something completely different. Something we had never imagined our offspring being into (beauty pageants?) Never Down syndrome. I'd never put the Babe into a tee that says 'Angels are made with 47 pieces' or the Viking in one that says 'I'm thankful to be a parent of a child with Down syndrome'. No! My daughter will only be an angel if that's how she's brought up (fat chance there cowboy), and we're thankful to be her parents, because, well, she's our daughter, and she exited through a gaping slit on my stomach (if that don't make you love someone, I don't know what will), not because she has Down syndrome.

She doesn't have to be special to anyone else but us. But we have to always remember just how special she really is.

We don't mind her extra chromosome, but we always keep it in mind.

     This is exactly how far you can throw me: The Babe intently focusing on the MBP screen while Mama surfs the internetz.

Tuesday, February 28, 2012

On prenatal testing and abortion



There is a lot of stuff floating around these days regarding prenatal testing and, as always happens, almost in the same sentence, about abortion. Especially abortion and Down Syndrome.

Just read all of these Time Health articles: this onethis one and this one. It's on CBS. There's been something on the Huffington Post. It's even sort of a campaign issue in the US presidential elections.

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.

Tuesday, February 21, 2012

If this was a mommy blog this post would be called 'The Birth Story' or some such crap-o-la

It's a long one, this story. But in a nutshell, it's one with a happier ending than any of us dared to expect:  The babe came out in grand, bloody style and screamed. And all was good with the world.

We already knew she had Down Syndrome, but that was the least of our worries in that operating room.

Still is, in our life.

The babe's now a little more than four months old and as parents I and the Viking (that's the Danish husband of a longish duration to this one, a slightly off-kilter Finn, who has been out of her depth for quite some time and kind of likes it that way, all in one mother of a tangle) are still counting seconds. And we know it.

But before we were counting seconds of parenthood we were desperately counting days and weeks. Of the pregnancy, that is. And here's how it all went down.

The Birth Story (do not dare to imagine anything cutesy here, since that's not how this bunch rolls. Like at all):

Ever since puberty, I had been told that getting pregnant for me was going to be the discreet affair between I, the Viking (at that point referred to as the generic husband, since the Viking himself wasn't even in the country when I hit puberty), the doctor, some powerful medications, hormones, possible surgical intervention, and several visits to the hospital. I had severe PCOS, you see. Something that the medical establishment had decided meant that I was going to be on the pill (as a way of regulating my menstrual cycle) until one day I'd decide it was time and make a series of appointments at the gynecologist's to score some hormonal injections and maybe a petri dish or a few, have Viking ejaculate in a number of cups, and go about my day scheduling in the creation of life (if we were to be one of the few lucky ones), or something in that vein.

We'd always said we'd adopt when the time was right. We'd be the perfect multicultural family for any child, from any background.

But then I took charge. I changed the way I was living - I trimmed away the meds and brought in nutrition and natural supplements - and a year later emerged victorious with a regular menstrual cycle and ovaries clean of the previously ubiquitous cysts. But the doctors were doubtful.

What the hell. We decided to give it a shot anyway. Au natural. And it took. 16 store-bought pregnancy tests and one blood test later we dared to be certain.

I was with child. (Again, don't you dare ooh, or even aah, we're cooler than that...)

Then my last remaining grandfather died, and off I went, by myself, all the way to Europe, with a terminal-change at joy of all joys Heathrow, to his funeral, to the cold and dark (at that time of year) Finland. And promptly had a threatened miscarriage. Hospital instead of funeral.

But she stuck it out. We decided on a Finnish name for her and breathed a sigh of relief.

Until I returned home to Mexico and fainted while I was brushing my teeth.

Which was when they discovered the hematoma and the tear in the placenta. Right after they diagnosed me with neurocardiogenic syncope driven completely out of whack by the pregnancy hormones.

Gatorade and bed rest. We began to search for a Danish and a Mexican name for her.

We just knew we were expecting a little girl.

The night before the 12-week scan we had prepared for the worst. What if there was no heartbeat. What if the development had stalled. What if the hematoma and the tear had been too severe.

What if.

It was an indescribable joy to see our baby dancing around on the ultrasound screen. And dancing she was. Twisting and turning. There was no question there was a heartbeat, her size was right. Everything was good. My doctor asked in another doctor to look at the screen. "Mexico?" was all I thought of that.

We sat in the doctor's office. The doctor took out some of the pictures he had printed out during the scan.
"So this is the fetus. This is the face and this is the neck," he said and we nodded. I thought he was being a weeee bit patronizing.
"Here is a little too much fluid in the neck," he continued, "and there's a fluid filled... a cyst on the neck of the fetus, which we can operate later on, of course."
The doctor stared at us.
"What exactly are you telling us," I said, "Is something wrong?"
"This could be nothing," he said in his accented English, "I am going to send you to the clinica materno fetal to do a better ultrasound. To do a better test. To calculate your risks."

And there it was.

Within a span of two weeks we went from doubting whether we were pregnant, to our chances of having a baby with Down syndrome being 1 in 2 and only slightly less for other chromosomal abnormalities as calculated from the results of the level II ultrasound, to receiving the preliminary results of the transvaginal CVS test, which clearly indicated that I had been right all along.

We were expecting a girl.

This little life had Down Syndrome, which made the pregnancy more risky. But she'd already dug her heels in when my uterus attempted to extricate her, held on tighter when the placenta tore and bled into the uterine lining, and she'd avoided the needle they stuck in through my vagina, right next to her tiny skull in order to harvest some of the placental cells for the CVS.

She wouldn't be dissuaded from experiencing the world.

"Like mother, like daughter," said the Viking and smiled (only he said it in Danish, which makes it much less of a horrifying cliche).

Even when the placenta began to measure off the maturation charts, and we, as well as the doctor, started referring to it as the 'Zombie-placenta (it just kept chugging on even when it should by all accounts have been completely lifeless), our babe just kept on growing. And kicking. And one particular Saturday undertaking something that felt like she had hired a work crew to demolish a particularly uncomfortable corner of her habitation.

There was constant monitoring and countless scares, when the umbilical flows weren't quite right, or the bones of the scull looked a little too attached, or the cerebral artery measurement took a dive, or the bowels started showing calcifications, or when the edema wouldn't clear, or when all of a sudden I could't feel her kicking.

Every week was going to be the last week I was pregnant.

The Viking gave me shots of steroids to mature Babe's lungs.

week by week.

When she reached a kilo in the womb, we were elated.

Day by day.

When we made it to 30 weeks, we could do nothing but cry in the hospital elevator.

By day.

When my pregnancy reached the magical 34 weeks, we didn't know which rooftop to shout it from and decided on the phone, the internet, and the hospital parking lot.

By week 35 she wasn't significantly growing anymore and the doctor recommended what he described as a normal course of action in Down Syndrome pregnancies: I would attempt to eek out as many days as possible until we reached week 37 and then he would induce labor. To diminish the risk of stillbirth.

We agreed. We were so close.

And then the oxygen in her brain started slipping. Inducing labor would no longer be an option. We began to plan for a c-section.

On a Tuesday, during the 36th week of my pregnancy, I got up early, took a shower, moisturized, put on make-up, blow-dried my hair and went for a brunch at my friends house, preceding an appointment at the clinica materno fetal for yet another level II ultra.

I chatted with the people at the brunch and found myself telling them that I was maybe going to have my baby that day.

So I did.

At exactly 7pm that night I heard that precious scream and finally took that breath I felt I had been holding for the past seven months.

For a few seconds all was well with the world. Our daughter was alive and well. In the NICU, but not in any real danger. I'd had my baby, we were out of the woods, right?

And then it hit me. I. Had. A. Baby.

Fuck.

Right then and there I realized one thing: It wasn't ever ' Fuck, I have a child with Down Syndrome', instead it was 'Fuck, I have a child.'  

And it kind of still is.

I had never understood what responsibility felt like before that day.

Or love.