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)

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Now also bloghopping with Jen from Down with Dat:

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... 

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.

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.

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 one, this 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.

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.