Back to War.

Rough.

There's a word for ya.

That should sum up the past two days quite nicely.

After another suspicious escalation of vomiting episodes and a steady decrease in successful feedings, we have returned with Ava to Arkansas Children's Hospital.  We brought her to the emergency room after her the last voiding left her seeming too helplessly lethargic to second guess the seriousness of the situation.  It shocked us terribly to see her anterior fontanelle (that is, the soft spot on the top of an infant's head) had begun to sink in -- a frightening sign of dehydration we recognized from Ava's previous hospitalization.  In an instant, our discussion turned from making an appointment with her pediatrician in the morning to how many changes of clothes to pack.

It's like having an old injury that lets you know there's a storm rolling in before a raindrop ever hits your windshield.  No more second guessing.  Don't wait for the watch before the warning. Just go.

So we went.  And after the all-too-familiar flurry of blood sampling and terrified crying jags, little kittenhead was admitted.

The suspects are:

PNEUMONIA.  There's some milky cloudiness in her lungs.  It could be attributed to aspiration of milk or puke, or it might be the community acquired variety.  Or a little from Column A, a little from Column B. Either way, her oxygen saturation was in the eightieth percentile when measured during triage.  She's been on O2 since she arrived, and that seems to be giving her a bit more pep in her
wiggle.

RANDOM INFECTION.  She was first suspected to have a urinary tract infection (which I know from experience can mess you up ten ways to Sunday), but when her lab cultures came in later today, we found it wasn't so.  She's currently on intravenous antibiotics intended to throw a net over quite a few possible problems. You could compare it to killing mosquitoes: best to swing wide with a tight racket and eliminate many than to nail one or two little suckers with a swift narrow bat, I guess.

FOOD ALLERGY.  An intolerance for certain formula can make a baby's body go off like a firecracker soaked in gasoline. Just ask my husband, who projectile-vomited for six months of his life  before his folks were able to locate a mix his body could tolerate.  Poor lil' feller.

THE MYSTERY OF THE BOWELS.  Like Lord of the Rings, but more with the preciousness.

Seriously, this is the one we're most acutely concerned over.  In my heart of hearts (and I use that phrase, but exactly how do anatomically locate such a thing?!?), it disturbs me to draw a correlation between her current symptoms and those she exhibited before we discovered she had a strangulated incisional hernia back in mid-March.  I knew better than to wait for the pea soupy stuff to make its inevitable entrance into this new digestive drama.  We came when it first turned neon yellow.  Maybe we're learning.

This is the most frustrating part of this diagnostic puzzle to me -- it's like having an extra piece that obviously belongs, yet doesn't fit for nothin'.  I can't shake my suspicion that something is amiss in there, even if her initial X-Ray showed that her bowel gasses looked normal, and no blockage was observed.  Just the way her stomach contents were ejected...*shudder*.  Mommy's having 'nam-style flashbacks of watching her decompensate last time....

So until we know what kind of game we're playing, and against whom, I'm going to respectfully ask that there be no well-intended visitors to her hospital room.  I promise to keep you all awash in updates and pictures.  We simply can't risk someone carrying some hitchhiking nasties in on them and causing her to fight another battle before we've come to an understanding about her initial one.  I'm sorry if I black out any other forms of communication over the next few days.  She needs me, and she owns more of my loyalty than social media does.  I'm sure you understand, Gentle Reader.

I will leave you with these Happies:

Ava Leigh could see that Mommy's had a rough day....

..so she offered me a pull on the ol' Wubbanub.  

M

And while Mommy went to make a lap and stretch her legs, the sweet nurses introduced her to the marvelous entertainment of CARTOONS!  She was captivated.

Her first one was Curious George. Then she graduated to Cinderella.

I'll consider it Princess Training.

Handicap

While I was dawdling around Walmart's baby department yesterday and picking thorough the itty bitty incontinence section, I was having a heck of a time locating those special diapers designed to keep the baby pee out of the pool.  When I couldn't find them in the logical place (ahem, with the DIAPERS), I approached a grandmotherly-looking sales associate and asked if she knew where I could find the Little Swimmers.

"Well now, I have to see who you're getting them for," she said as she shuffled around my cart to steal a peek at who was in the baby carrier.  

Ava looked up from the plastic toy she was flinging back and forth.  "Isn't she just precious!" said Walmart grandma.  I beamed, of course, perfectly willing to accept full responsibility for such a glorious child. 

"Bvvvv!  Bbbbbllurv!" Ava exclaimed through a wide grin and a spray of spit bubbles.  Just keep turning it up, sweet pea, and we'll never get out of here, I thought.

After the typical round of cooing and foot tickling, Walmart G'ma finally reassumed her regular vocal pitch and asked me how old Ava was.  "She's almost five months," I replied, and noticing the concern in her eyes as they passed over my daughter's slight form, I added, "We knew she'd be smaller than most children her age -- she was diagnosed with Down's at birth.  She had surgery when she was three weeks old and was in this hospital for twenty days, but considering all she's had thrown at her, she's thriving."  

Looking back on that decision to lay my momma cards on the table and talk about her medical history and diagnosis, I don't feel like I did anything wrong by stating something that might or might not have been obvious.  I've mentioned it in conversation before, to different responses.  In most instances, the other party would usually take a second glance at her and nod or give a knowing smile, and that would be that.  There have been a couple of times when I've brought it up during the course of a discussion when it's taken someone by surprise, and I've just had to tell myself that they look fish-slapped because they didn't notice things that doctors even had to point out to me when she was born.  Still, no biggie.  I don't expect you to keep up with the minutiae of our lives.  If we don't chat it up like old chums on a regular basis, it wouldn't shock me if you didn't know my beautiful daughter has an extra chromosome. 

Maybe I've just been lucky that no one has said anything terribly tacky about it in my presence, or they've always been fortunate enough to catch me in a diplomatic mood and I could chalk up their insensitivity to sheer ignorance.  

  

Yesterday wasn't one of those days.  I wasn't in the right frame of mind for social hour.  I just wanted to grab our tiny aquatic diapers and skedaddle.  My head was throbbing to the beat of someone's blaring ringtone.  Ava needed a full-sprawl, log-sawin' nap.  I had one foot poised to scram when the woman went and let fly with this bogey:

"You wouldn't have to tell people she has Down's.  Or maybe you could tell them that it's just suspected, but it's not confirmed yet."  Then she looked at me like she'd just solved the New York Times Sunday crossword. 

Apparently it was my turn to have a trout-to-the-temple moment.  What the fool was that kind of lie intended to accomplish?  Why should I, or Ava, or ANYONE be made to feel that a disability is something worthy of a lie?

Thankfully, someone else approached us at that moment and asked her for the same thing I had been hunting for (which means, dear retailers, it must've been in a poorly chosen location!).  I politely ducked out of her company and fled to the shoe department, where I hid amongst the Dr. Scholl's until I could sort my thoughts and figure out why I was so shoe-pitchin' angry.  

She grew up in a generation who looked at these things differently, I assured myself.  

She's just talking out of her south end.  She wasn't thinking.  She was just making conversation. 

I didn't bring up Down Syndrome in order to solicit advice.  I told her so she'd understand how far our girl had come.   Then she advised me to deny it, to act as if I hoped she wouldn't be exactly the way she was.

How would she have felt if she had a granddaughter with unique red hair, and I told her, "Oh, she could always dye it."  

Or what if she had a grandson who was shorter than every one of his classmates, and I advised her to teach him to walk in stilts every day so no one would be the wiser?

How sad to be unable to look things in the eye, acknowledge them for what they are, and just roll them into the snowball of everyday life.  

I think her self-imposed handicap is the actual tragedy.

 

Film

Thank God for film.

It allows me to compose the history I was too busy to write.

Film reminds us that we were all in style at one point in our lives.

It confirms that even when we were at an awkward and painful age, we still had every reason to be happy.

It assures us that just because you start off with a dumb haircut doesn't mean you're doomed to keep it for eternity.

And if you occasionally bother to smile, good things can happen to you.

( you might get a crown... Or a cookie!)

No one will notice you're knock-kneed if you walk with purpose.

Imitate those you admire....for the right reasons.

Sometimes when you try to look like someone who should be taken seriously, you end up looking like even more of a goober.  Don't try so hard.

Once you get where you're going, remember to pause and enjoy the view.

When you come across someone special, keep them close...

...because you'll never know how much you loved them until they're no longer around.

Every silly, mundane, despairing, gleeful, spontaneous moment is precious.  

 



     

And if you recognize that, none of them is ever wasted.

Squigglewormin'

A lot of people have told me lately that all they see Ava do is sleep.  And I'll acknowledge that they're right.  That is usually the portion of her day they get to witness.  

When we emerge from the house or the church nursery, she's usually plastered to my chest like a moth on a windshield, arms spread, mouth agape, journeying ever deeper into dreamland.  

And I allow it, because the rest of the time, she's training like Hugh Jackman.  So far, she has speech therapy twice a week, developmental therapy once a week, and six dozen opportunities a day to play in ways that make her stronger.

This doesn't mean we've enrolled her in baby boot camp.  We aren't imitating the  strictly regimented childhood of a communist Olympian. What we are attempting to do is to help Ava Leigh realize her physical, mental, and social capabilities.  If she believes that she can accomplish even more than what is medically expected of her, we think that everything we can do to support that drive is the least she is owed.  That support begins with structure.

Her daily routine reflects a parenting philosophy I've picked up from the engaged, mindful mommies I admire: Play hard, Eat well, Sleep deeply, Give and receive constant affection.  

Ava's therapy figures heavily into this equation, affecting all the above.  Through therapy, she learns to keep her focus for extended periods of time, to move and react in ways which improve her ability to function and feed, and to accept people other than Mommy, Daddy, or Bradley Cooper.

Since we have to schedule our days around therapy and church (add to this the factor of living twenty miles from everything -- not that this hermit's complaining), this means we have to be fairly disciplined in regard to her schedule.  So if Ava is sucking her fingernails off to demonstrate it's dinner time, I don't want her to waste precious energy squalling over an empty tummy.  I always keep an extra pre-measured bottle on hand. When it's time for a nap, we find a quiet nook and rock-a-bye, she's out.  Hence the snoozing spider monkey pose at church.  

So far, the little squirrel has surprised everybody with her progress -- Mommy and Daddy included.  She's able to hold her head up with increasing steadiness, and seems to be growing out of the Stevie Wonder head wobble she did while she was struggling to right herself.  I can carry her around the house now with my arm around her middle and a hand poised to gently steady her.  Sometimes I have to guard myself from becoming too casual about this pose, because she's getting to the age where she likes to throw things -- including herself.  If I don't watch it, when Ava sees something that interests her, she'll put all of her oomph into pitching herself at said object.  As you may well imagine, this has resulted in a heart attack or two.

But if a few cardiac episodes is what it costs to have an active daughter, then hand me the pen.  I'll pay up front.  We will never take Ava's progress for granted.  We're thoroughly enjoying watching our little squishpot becoming quite an inchworm.... Look out world.  And look out, Honey Boo Boo Dog. Your days of napping unbothered on the easy chair are numbered.....

Worth.

 Dear Ava,

Two weeks before you were born, a clear-sighted specialist ran a wand over my pregnant belly and discerned what those before him, for whatever reason, could not: according to the constellation of signs and measurements, he gave you a fifty percent chance of being diagnosed with Downs Syndrome at birth.  As as I imagine most parents in our situation would react, Daddy and I thought to ourselves, "Well, that means there's also a fifty percent chance she won't."

Given our strange talent for dodging bullets, I reasoned within my heart that surely this would be another exit on the road to normal family life that we would bypass and look back upon with private relief.  When they handed you to me and announced your surprisingly high APGAR score, I gazed into your puffy eyes and examined your perfectly peach-soft form, resting in the self-assurance that you would be no more challenged than the next baby down the hall.  You had demonstrated the lungs of a Metropolitan Opera soprano, the grip of a rock climber, and an unwavering gaze which fixed itself upon my face and studied it with focus unfazed by birth.

You could imagine my surprise when an apologetic looking-doctor appeared at my bedside and told us that it appeared you possessed what he called "markers." The palmar crease.  The slightly almond shaped eyes.  The gap between your first two toes.  

The truth reached my ears, but didn't quite make the extended trip to my brain.  I don't think I could've been more surprised if they'd shot my epidural full of Mountain Dew.  And for some bewildering reason, all I could think of were literally the Crayola markers I treasured as a kid.  The fat kid-friendly ones, the ones that I used to draw horses and portraits of my elementary school friends with great 90's hair.

I watched you lying contentedly on my chest, and you met the concern in my eyes with an unflinching calmness.  You didn't seem upset about the news.  You almost looked amusingly defiant of it.  I held you a little tighter, as if I could protect you from the tidal wave of reality that was poised to smash into us.  

I wasn't afraid of who you were.  Your Daddy or I did not want you to be any different. The current of fright that coursed through my body at that moment was plugged into the acknowledgement of way the world might treat you, or rather, mistreat you.  As a former aspiring child superstar (cue pitying laughter *here*) and chronic people-pleaser, I was sensitive to how your life might be designated by others as possessing less worth than someone with greater learning capacity, entertainment value, sex appeal, or earning potential.  Welcome to modern America, sweet baby.

And now, part of me is relieved that it will be very unlikely you will agonize over the things that held me prisoner as a child.  You have much better odds of living a joyful, social life than your mom has dared to.  Chances are you'll probably dodge the inherent tendency to become depressed over politics, squandered educational opportunities, or diminishing skin tone as I do. And if you continue to enjoy the health and willful strength you exhibit now, you'll get to spend your days actually participating in the adventure of your life instead of concocting it in the safety of your head behind a keyboard.  

In short, there is a legacy of joy that awaits you -- one which has eluded me, and is tuned to perfect pitch by many of your chromosomal brothers and sisters:

Your heart will dive into the deep end with gleeful abandon, while the rest of us struggle in the shallows.

*~*~*~*

I had a dream a few nights ago that tidily summed this up in the metaphor runes of my subconscious.  (Geez, I just made it seem so complicated and mysterious.  It's really only as absorbing as watching a poorly-edited cable series.)

In this dream, I visited two neighborhoods -- one broad street lined with mansions, and the other a meandering suburb dotted with humble post-war construction.  

The former neighborhood's row of grand estates was an impressive sight at first glance; each featured every impractical luxury and architectural frippery ever contrived.  In contrast, the insides were a ramshackle mess.  Abandoned rooms, unstable foundations, cobwebs, crumbling plaster, dangerously exposed wiring -- I expected Edward Scissorhands to emerge from a shadowy corner at any moment.  

He didn't, but there was little evidence of other life to be seen.  The few who dwelt within the first house I approached were immobilized by a dim existence, one defined solely by the expulsions of a droning television.  I spied on them through the shattered pane of a stained glass window and thought, How can someone accustom themselves to this ruined version of domesticity when their homes possess so much potential beauty?

The latter neighborhood -- the one with modest yards and simple construction -- was bursting with the colors of carefully tended landscaping and freshly painted exteriors.  The smells of bacon frying and buttery sugar burning drifted down the narrow street, and friendly pets roamed from yard to yard in search of a cool porch or a willing playmate.

As for the residents, their homes were not lorded over, they were shared.  The particular bungalow that caught my eye was the scene of a glad party, where women traded clothes and passed around pitchers of lemon tea as they wandered from room to room.  Everything about the place was comforting to the senses as well as the soul -- from the deep couches and the smooth hardwood floors to the cat contentedly napping in the windowsill.

Somehow, I got the sense that this was your house, or rather, you WERE the house.  The house was your life.  It was vibrant.  It was bursting with friends, with refreshment, with graciousness.  You accepted your house/life for what it was, and made it something unique and welcoming.

When I woke from this scene, I knew I had been baptized into a new understanding of you.  

There have been many unexpected aspects of our lives together that I've easily accepted, and still others I've agonized over in fear of the future.  Would you be healthy?  Would complications from Downs prevent you from leading a productive life?  Now, I want to kick my scaredy-self square in the hams for thinking that way.  I mean, what IS a productive life, anyway?  By whose concept of productivity would we measure its worth?  And who am I to dictate the worth of a life, regardless of its intellectual or physical capacity?  After all, I'm not the one living the life I stand in judgement of.  I'm sure you will believe your life is very worthwhile.

You are pointing me toward a new set of values, daughter -- one that prizes the talents of friendliness, determination, genuine sweetness and ecstatic response over others which serve to exalt only their possessor.  Your talents draw the best from those around you -- your parents included.  

In return, we try to give you the gift of support.  We want to arm you with the capabilities you'll need to pursue the aspirations seeded in you.  

Even if you were silent.

Even if you could not get around easily.

Even if a smile was all you could offer.

What you give us of yourself is more than enough to prove your worth.

Pretty Season!

As it is growing closer to summer pageant season, Mommy figures it's time to flex her bio form completion skills.  Let's take a peek over her spit-up stained shoulder and see what she's scribbling:

NAME:  Ava Leigh Clenney

NICKNAMES:  Mini Clenney, Pooter Scooter, Sweetish Meatball

HEIGHT: Knee-high to a pig's eye

WEIGHT: Heavier than a feather, lighter than a 'tater

EYE COLOR:  Bennett blue

HAIR COLOR: Nude

PETS:  Honey Boo Boo Dog, MJ the cat (thusly named because it doesn't matter if he's black or white), and an ever-fluctuating number of Pygmy goats.  For now, we'll say eleven.

FAVORITE TOY:  Beary Brandt the Weather Teddy, her Click-Clacks, the Pentagonal Ball, noses.

FAVORITE TELEVISION SHOW:  The Chew

FAVORITE SONG:  "Patty-Cake"; "The Little Green Frog"; "Hallelujah", the Tom Waites version

FAVORITE ACTIVITY:  snoozing, grinning, pooping, algebra.

FAVORITE PERSON:  Daddy.  And Bradley Cooper.  But mostly Daddy, 'cause it's like having the best of both worlds.

FAVORITE FOODS:  Enfamil Premium with a rice cereal chaser

WHAT SHE WOULD LIKE TO BE WHEN SHE GROWS UP:  A clothing designer.  Or a squirrel.

A wee queen-in-training gets her beauty sleep and a workout all at once.

Commitment, boss.