Yup, I’m six months old.  I’m actually a few days older than six months old because you couldn’t get your ass in gear to write this post.  Uh, no.  I’m writing this.  Not you.  Right.  Sorry for the crude language, you’ll still feed me in the morning, right?

Anyways.  I’m glad you’re giving me the synthetic thyroid.  I’m feeling loads better.  I know you’re feeling guilty about not giving it me earlier, but you should try to get over yourself.  I say that in the most respectful way that a baby could say it.  The thing is, you did your best, I lived to see another day, and that’s that.  Really, if you hadn’t tried to avoid the synthetic stuff, I’d have been a little insulted.  You spent all that time with my sisters fretting over vaccinations and keeping them away from scary chemicals, the least you could do is give a more natural treatment the ol’ college try.  I think you’ve already delved into the idea of guilt on this blog.  So let’s move on, mama.  Hugs.

I’m doin’ alright, huh?  I’m pretty stoked about sitting up.  (Let’s not mention to your blog readers that I can only do this when the stars align and for a few seconds at a time.  That would be too much detail, ya know, take away from the glory of my moment.)  I’m eating food still, much to your relief.  I’m starting to giggle.  What I’m really laughing about is how hard you guys try to get the laughs out of me.  Honestly, you’re all acting a little desperate, you might want to tone it down a little.

What else can I tell ya?  When you turn your back, my sisters pretty much descend on me like a pack of… rabid princesses.  I know they mean well, but you might want to check in on me a little more.  Stickers on my face hurt to get off, and they are always grabbing my arms and making me “dance” with them.  It is embarrassing, mom.

Here’s some pictures of my first six months.  I know it made you a little emotional to see these pictures all at once, but don’t get too carried away.  I get that my arrival made you really go through some “what is the meaning of life” kind of moments, plural, but don’t blame that on me, okay?  ’Cause I’m pretty sure you were ripe for it anyways.  Another reason not to get too emotional, it’s probably time for you to write another ranty blog post, so I don’t want you getting too mushy and going all puppy dogs and rainbows on me.  Not that you didn’t do that already with that Mother’s Day post.  Sheesh.  Just keep it together, mama, I know I’m good lookin’.  Don’t cry.

Love,

LP

“Did you tell me the truth?  Yes. Did you tell me what actually happened?  Yes, mama. Did you lie?  Yes… Wait, mommy!”  (Crying ensues.)

Done.

Lately, though, she’s been telling some pretty tall tales.  It is fairly obvious when she isn’t telling the truth because she fidgets and looks up and to the side while she is weaving her web of lies.  Mostly, she lies when she thinks that telling the truth will get her in trouble.

Last night, she and I were having yet another conversation about why it is important to tell the truth, and she got quiet.

“Well, mommy, but sometimes you can say it fifty-three-hundred times and it might come true.”

Hm.

Touché, Mouse.

Does the very act of putting out your own narrative over and over again lend it life?  Where is the actual truth?  Sometimes Mouse’s lies are, well, a little fuzzy.  When I push her on them, she knows what she said isn’t right, but I’m fascinated by her ability to re-frame the events of her life.

Mouse: My sister is sad because she didn’t know how to twirl like I do.

Me: Your sister is sad because you told her she wasn’t twirling right.

I can’t help but think of politics.  One side has a narrative, the other side has a narrative.  Facts, meh.  Then each side goes about raising as much money as they can to yell their narrative as loudly and in as many places as possible, while simultaneously muffling the other side’s narrative.  Yeah, sometimes there are pesky truths that get in the way.  Not always.

Obama: Mitt Romney is a privileged business man who cannot fathom the concerns of the average, middle class Americans.  He will continue a dark legacy of money and privilege that I have been fighting for four years.  He does not respect you.

Romney: Obama has eroded our American values of hard work, individualism and accountability.  He has lead our country into crisis by redistributing middle class Americans’ hard earned wealth and refusing to be fiscally accountable.

(Please don’t virtually tar and feather me.  I’m just trying to show how relative today’s politics are and now none of it has much to do with actual facts and truths.)  I see this dance play out in every major political debate, every marriage, every disagreement.  We are all fighting to have our story on top.

Before this, I used to worry that Mouse was too passive and honest to a fault.  I might be wrong, eh?  Now I’ve got to worry about my kid going into politics.  Shudder.

It is still not cool to lie, Mouse.  I understand how complicated it is though.  I really do.

When I took my driving test, one of the things I got marked down for was not checking the mirrors enough. I’m probably still guilty of that. So one of the benefits of these cobwebs is they give me an opportunity to check out what’s going on behind me–the road that led me to where I am.

I’d like to take a moment now to do the same thing with the history of Down syndrome. Will you join me for a trip to Victorian England?

Once upon a time there was a British doctor named John Langdon Down. He was a rising star in the medical community, and he surprised the establishment by rejecting a career at a prestigious hospital, instead opting to slum it with the “idiots,” “imbeciles,” and “feeble-minded” then packed into institutions.

Down was apparently an advocate for improving conditions at these institutions, and so by the standards of his day, he may have been something of a progressive. He was also, however, a virulent racist and staunch social Darwinist, which is where the genetic condition we now call Down syndrome comes in.

You see, Down had a problem. He was a clinician, and every day he went to work and a parade of anxious parents peppered him with questions about what kind of “mental lesions” their kids had, and why they were born that way. But as of the mid-nineteenth century, the medical community hadn’t given much thought to classifying the different kinds of developmental disabilities, or to understanding their causes.

Down wanted to change that. So in 1866, he published a paper called Observations on an Ethnic Classification of Idiots, which was one of the first times anyone in Western medicine identified the class of people we now refer to as individuals with Down syndrome.

At the time, Darwin’s Origin of Species was hot off the presses, and the concept of evolution had captured the imaginations of white Europeans as an explanation for their self-anointed superiority over everything else on Earth. Darwin also influenced a popular theory of uterine development called “recapitulation,” which theorized that embryos inside the womb passed through every phase of human evolution, from fish to reptile to mammal to human–and if you were lucky, all the way up to Caucasian.

Against this backdrop, Down looked around at all the “idiots” under his care, and a light bulb went on. “By golly,” he thought, “most of these ‘imbeciles’ don’t even look White!” Instead, he believed, most of them looked either “Ethiopian,” “Malay,” Native American, or of “the Mongolian type.”

This last group was most interesting to Down. He gave a lengthy description of the physical characteristics that, in his view, set the “Mongoloid idiots” apart from the “great Caucasian family,” and he concluded that the problem with this group of people was basically that they weren’t White. Instead, he believed, their fetal development had been arrested at a lower stage of human evolution–Mongolian–which explained their cognitive “degeneration.”

The cause of this phenomenon? After apparently conducting some sort of anectodal survey, Down concluded that most representatives of the “Mongolian type of idiocy” shared a common denominator: tuberculosis in their parents.

In sum, Down argued that people with Down syndrome were “stuck” at Mongolian on the evolutionary scale because their parents had TB. Remarkably, Down concluded that this theory “furnish[ed] some arguments in favour of the unity of the human species[,]” because according to him, diseases had the power to break down racial barriers.

This history teaches us some important lessons, two of which I’ll highlight (thank you Captain Obvious).

First, unbeknownst to most modern Americans, words like “idiot,” “imbecile,” “moron,” and “feeble-minded” are heavy with the weight of history. These terms were used for many years as clinical diagnoses to institutionalize, forcibly sterilize, and otherwise marginalize large groups of people who weren’t even deemed worthy to walk the same streets as everybody else. In addition, at least after Down’s paper, these words took on a sharply racist tone. Similar (though of course not identical) to the “N” word, these words still carry a painful sting for many in the community. We would all be well-served to bear this history in mind the next time we’re tempted to use such words to mockingly describe another person as “not smart.”

Second, why in Heaven’s name do we still refer to T21 as “Down syndrome”???!!! I don’t know about you, but before I read Down’s paper, I imagined him as a mild-mannered geneticist in a lab coat working hard to figure out the extra chromosome thing. Not so. That guy’s name is Jérôme Lejeune, who did his research in the 1950s. By calling T21 “Down syndrome,” we all unwittingly perpetuate Down’s offensive legacy, not to mention the junk science that spawned such senseless tragedies as mass institutionalization, eugenics, and forced sterilization–i.e., the unspeakable suffering of countless human beings. Wouldn’t it be better to simply call this genetic condition T21, or even “Lejeune syndrome”?

It can be challenging to wipe away the cobwebs and take a hard look at our past. What we see is often ugly and difficult to swallow. On the other hand, unless and until we’re willing to take on this hard work, we’ll always just grasp in the dark as we try to move forward toward a better future.

I dreamed of you before your souls were tied to any physical existence.  I was your mother before you even came to be.  Your existence floated all around me, waiting.  In the beginning, your physical form came into being within mine, pulled from the ether into my body.  The first electrical currents of your thoughts began inside my body—each of you, the tiniest snow globe inside of me, housing the cracks and thunder bolts of your emerging personality.   The first thumps of your hearts, began in me.

When you grew, every cell in your body came from me.  For nine months, you were a new permutation of myself, cell by cell, molecule by molecule.

So believe me when I say that watching you grow is like sending pieces of myself into the world.  Pieces that I sometimes long to take back while simultaneously ache to set free.

You are the physical manifestation of my love for your father—genetic amalgamation, so fearfully and wonderfully made.  As we created you and I birthed you into this world, I believe when the time comes, we will birth each other into the next.

And so we continue, in this infinite loop, in and out of physical existence.  Mother, children, father, family.

I am your mother.  I love you.

Happy Mother’s Day, to all mothers of every permutation.

Unbeknownst to this blog (yes, I’ve sort of come to see this blog as an entity in its own right. I keep secrets from you, blog, and did you know that??), I’ve been quietly freaking out about the possibility that LP wouldn’t eat regular food.  Part of it is that I’m so food-centric, part of it is that struggling with solids is such a common part of the “baby with Ds” profile.  I just hated the idea that my kid might struggle with eating.  I know, kind of irrational, and based on a stereotype.  Plus, I know plenty of moms who had kids go through rough times with solids and they all seemed to get through it in the end. Still. I dunno, it just bugged me more than some of the other potentials, and I figured if I was most worried about it, it would definitely come to pass.

For reference, Mouse and Chipmunk just ate food, simple, easy peasy, no problem.  At some point, when they started sitting up, I’d just give them little bits of food.  They’d stick it in their mouths, gum it up, and swallow.  Repeat.

Side note: Chipmunk had a phase during which she wouldn’t eat much except for potatoes and bacon fat.  That passed, thank goodness.

Anyhoo.  I’ve given LP food once before, but thought it might have been a fluke, because he seemed to be unaware that it was even happening.  But… this morning, LP was sitting in my lap and he taking swipes at my fork.  First, it thrilled me to no end that Mr. Spaghetti Arms was swiping at anything.  Second, I was double thrilled that he wanted my food.  So I gave him some.  He chewed.  He swallowed.  Then he looked up at me with a huge grin.  I gave him another bite, and he actually opened his mouth in anticipation.  (Cue Handel’s Messiah)

Total breakfast: Two pieces of potato, a bite of egg yolk, and two itty bitty pieces of strawberry.  Not bad, eh?  I would have given him more, but then started worrying that it was too much.  Yeah.  Can’t win.

I am not sure why this has been such a big deal for me.   Maybe I just needed the reminder that he was just like the rest of the Taters.   Different in some ways, I can’t deny that. Aren’t all siblings different in some ways, though? Mouse chews her knuckles so hard when she gets nervous that she gives herself rashes. She didn’t really speak until she was two years old. Chipmunk. Well. That child is so afraid of animals that she will run screaming from a butterfly. Talk about things that make a mother worry. What is that child going to do for field trips and biology class?

I’ve been spending a lot of time outraged about the social barriers LP will face and worrying over his medical issues, but it was nice to be reminded that as far as development goes, the timeline might be spread out, but it is turning out to be pretty darn uneventful*.  Chew.  Swallow.  Grin.

Breakfast? I’ll take it.

*I’m fully aware that by writing this, I am sealing our fates to face some huge challenge when it comes to LP’s development.  It’s cool, kiddo.  Don’t walk until you’re 5, don’t talk ever, whatever it is, we’ll figure it out.  Love you.