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.

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.

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:

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! 

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.