Big Bow Wrestling Match!

Mommy wins.

Every time.

BOOP and POOP!

At thirteen months, Ava can:

...blow you a kiss and exclaim, "BOOP!"

...spray her baby food all over me in a continuous succession of raspberries (PFFT!  PFFT! PFFT!)...and understand by Mommy's reaction that she's NOT SUPPOSED TO DO THAT.

....holler her new favorite word at choice moments, say, in the que at Walmart or during therapy: "POOP!"

...place block, balls, or rings in, out, and off of anything she's playing with.

...pet Honey Boo Boo Dog without tearing Honey's ears or lips off.

...appreciate vegetables as much as (and maybe more than) fruits.  (This makes Mommy SUPER happy.)

...play a made-up note-by-note melody on her toy piano.  I call this her One-Note Sally act.

...carry on a babbley conversation with Daddy when she greets him at the end of his workday.

...roll anywhere she wants to go.  And I mean ANYWHERE.

...sit up with a teensy bit of assistance holding her legs down.  Girl got abs like Janet Jackson. (...used to.)

....say "Dada", "Booboo", and "alligator".  (Once.  I swear.  Perhaps on accident.)

...make marks on paper with a crayon.  They kind of look like cerulean blue gnats.

...laugh so hard she makes herself hoarse.

...make me cross a room to pick her up and hug her for no particular reason at all.

Frost.

Nearly every morning, I wake up before everyone else in the house -- still in the habit of keeping banking hours, I suppose -- and I pass quietly through the house, sipping coffee, doing chores, blogging, etc.  But each of these mornings, I always end up standing in the bedroom doorway, watching Ava and Daddy sleep.

Maybe now that events like hospital stays and doctor's appointments have become less frequent, they've faded and flattened into the record of our past, no longer expected to pop up when we wake up and turn another page.  We have appointments, but not so much the kind of worried meetings we would sit through with this or that specialist.  Our goals for maintaining Ava's health and well-being seem more commonplace, and therefore less insistent: keep her lungs clear, make sure she's receiving enough oxygen at night, help her learn how to crawl, thinking of new foods for her to try, etc.

Over the past few months -- perhaps even more so since she's turned one -- our lives together have bloomed, taking their cues from her growing sense of self.  Our everydays are no longer thought of as rigidly charted blocks of time. They stretch to contain unhurried shopping trips after therapy, moments stolen on park swing sets, family lazy snuggle time on the couch, and all the things we imagined doing as a family from the moment she was conceived.  

Sometimes life doesn't turn out the way you want or expect it to.

I've come to realize that in my case, this has been The Best Thing.

If I'd never slept in a sparse, impersonal apartment on my own, I'd might never have appreciated the time I spent with my family, no matter if it was in a nursery or in a hospital room.

If I'd never had the opportunity to be with family during dire hospital stays, maybe I wouldn't have been so calm when surrounded by wires and nurses and alarms day after endless day.

If I'd never had role model parents in my family who actively enjoyed raising their children no matter what their child's needs were, maybe I wouldn't be so immersed in the joy of teaching and caring for our daughter.

If I was rushing around in the morning getting ready for work, fretting about my makeup and shoveling pop tarts and caffeine in my face, I wouldn't be standing here watching my family, my beautiful, wacky, trying, dearer-than-life family, sleeping peacefully as the winter sun creeps into the room like bright white frost.  The moment freezes.  A shutter snaps.  I collect the moment, store it away for the sake of my own secret pleasure. 

I could watch them forever.  

But I'm not.

I'm going to jump in their faces and kiss and tickle them and give them coffee and milk. 

( I would assume you'd guess who's getting what.)

Fart Me to Sleep!

Dolly Smoosh!

I've noticed Ava playing differently than she used to.

Before she turned a year old, her concept of fun was to bang things together to make noise, or to gum it into submission.

I just noticed last night that she's kinda starting to play like a little girl....

...if that's what you can call walking your Mooshka Tot dolls around by their pigtail nubs and pretending they're saying, "Dep dep dep dep dep dep yyyyaaaaah!"

Clarifying.

Streeeeetch....okay, let's do this!

Let's talk about some things I often skirt around in polite conversation.

Let's discuss how we view individuals with Down Syndrome.

I'm not interested in stoking a row over semantics.  I'm not here to be the disability police, or to legislate out language that makes me uncomfortable.  

My lone objective today is to challenge you to think about your communicative intention when you speak of the subject.  As in, understand what you're saying, and in turn, say what you mean.  

First, a biology lesson: 

A diagnosis of Down Syndrome -- also referred to as Trisomy 21 -- is defined by the presence of an extra copy of the person's twenty-first chromosome.  A geneticist can show you a lab test of Ava's chromosomes and point out where there's an extra little squiggle next to the pair marked XXI.

Either you have an extra squiggle, or you don't.

You can't "catch" it like a virus.  A person's appearance or IQ has no bearing upon their status as a man or woman with Downs.

You can't have a "case" of it, and there is no "better" or "worse" of it.  

It just IS.

There are visibly identifiable traits shared by many individuals with Down Syndrome.  I see them as "family" traits they share with their brothers and sisters with Downs, which I think is something to be appreciated in and of itself. 

There are those shared by most -- the unique shape of their eyes; their lower-set ears which perfectly offset a sassy little ponytail; the single, long crease that runs across one or both palms; the extra space between their first two toes which make them model flip-flop wearers.

And now to bring up the nervous elephant in the room: when it comes down to the way that intelligence is measured, I think the Downs community gets the short end of the stick.  The way I see it, there are many different kinds of intelligence, and if yours is not the type that produces some measurably marketable product or service, you are treated as a less valuable member of society.  

If their intelligence is best expressed through the arts, or interpersonal relationships, or spiritual wisdom, most folks will still count them out because they are blind to their contributions to the community.  It's true.  You know it is. I know it is.  We're not as appreciative of the differently-abled as we'd all like to believe we are, as if living in a world full of unique folks is all lollipops and rainbows and we're all standing around holding hands and singing at the Michael Jackson Superbowl Spectacular.  

Whatever.  Let's just all admit we sell them short because as a group, we place such value on each child's earning potential, which is more often than not linked to measurable academic performance.

But how many so-called intelligent people do YOU know who drive themselves bananas because they can't be everything they're expected to be?

Sometimes having limits can give you valuable focus on what you CAN do.

While I can't prove that ALL individuals with Down Syndrome have unlimited capabilities, I can confidently claim that the same is also true for the rest of us.  

And just because you're capable doesn't mean you're making the most out of what God gave you, and doing the rest of the world much good in the process.

I can't recall a tenth of the drivel I regurgitated back to my teachers in high school in order to earn decent grades.  I slouched and slept my way through most of my classes, fully expecting the world to lay itself at my feet when I graduated.  

Does that mean that I've grown up to be a productive member of society?

I'm much less of one than I should be, and that's no one's fault but mine.

Our daughter, on the other hand, applies herself with fierce determination when she holds a goal in mind.  She figures out her own ways around her muscle tone issues in order to play the way she wants to.  She can follow directions.  She flirts.  She poses.  She knows when someone is sad, or when someone is silly, and reacts empathetically.  She is learning that Momma don't take no sass when she begins to throw a tantrum, because she now recognizes Mommy's Stank Eye.

She just turned one.

While I can't justifiably speak for the Downs community as a whole, I can stand up for my kid and shout, "Yes! She's different from most, and thank God for it! She'll probably accomplish more of the work He intended her to do!"

We needed some fresh perspective around here.

We needed to remember that slower isn't worse.  On the contrary, it's often more thorough.

We needed to stop pointing to digitally enhanced, surgery-sculpted public figures as our standards of beauty.

We needed to be reminded of what it feels like to TRY with all our might.

And we needed to recognize the value of another's insight, especially if they experience the world differently than we do.