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 There are so many stereotypes and so much outdated and even completely and utterly wrong information about Down syndrome and people with Down syndrome out there that there aren't enough blogs or posts about it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. 

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.