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.


  1. Interesting thought...I can't help thinking that way myself, sometimes...thinking that if we could just *overcome* these hurdles, her life would be exactly like anyone else's. Rather than acknowledging the fact that things *are* different. Not bad, not less, just *different.* Some of us are born with tall genes, making it easier to watch a concert from the back row over everyone's heads. Some are born with the *short* genes, making that particular option an impossibility. They adapt and adjust and have their *own* way of looking at their world. Maybe I didn't make my point right, but hopefully you know what I mean...

    Btw, I'm looking forward to reading your take on religion... :-)

  2. To be honest, I haven't got a clue. But I do know that you've completely changed my perception of that tiny little chromosome. The smallest, titchiest chromosome of the lot, but one that used to make my heart sink a little when I could count 3 per cell during my chromosome analysis days. But how could anyone look at that chubby little tummy and not adore it?! Extra chromosome or not, the babe is one adorable little girl. I do know I wouldn't change a thing about my 2 babies, unless I could eradicate nose picking from their characters. That really winds me up. Especially when they they eat it *pukes*.

  3. I don't pretend to know anything about DS so let me just say what I do know. She found her feet! I love this stage. I hope you are enjoying all of the amazing little things she does. I am enjoying mine. I am also glad to see you are back on wine....and not from a box...right?


The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.