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?

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.

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

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?

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.

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.

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.

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.

ÄITI - 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.