Redraw

Hiya, Cheeksqueaks!

I'm pulling my time and energy back from some less-than-encouraging spaces in order to devote more of my attention to this one.  While I spend most daylight hours chasing a moderately mobile toddler who crab-scoots with the speed and aptitude of Futurama's Zoidberg, I still manage to eke out breathable amounts of recreation during baby naptime, during which I must use my precious stillness both wisely and quietly.

Therefore, blogging is back in.

Facebooking is out.

Bow-making, book-reading, and crock pot-stewing are also in.

Out:  Department store-wandering, afternoon judge show-watching, toenail-bedazzling, and fantasy novel-perusing.

And above all, family-knitting-togetherishness is the innest of IN.

Time to redraw the circle I dance in, then abandon myself to the steps.

Beach Baby!

Before I get completely carsick and yarf for reading my own writing in the back of a moving vehicle, I want to take the opportunity to tell you why this road trip to Florida has proved to me yet again why we won the baby lottery when we were blessed with Ava Leigh.

Being in the car for two days at a time can really fry a kid's marbles.

Cheeks was like, "Oh, you're gonna play Sesame Street for the seventeenth time and feed me Ritz Bits?  I am SO down with that....AGAIN!"

Not that she didn't have her moments of sequestration-induced nuttiness.

We took her to dinner every night (except for mommy/daddy date night!), sometimes around bedtime (since that's when we would be rolling into town), and she would have every nearby table flirting with her and any waitress in the joint squeezing her soft little paws and tickling her chin.  The maid from our hotel couldn't help from giving her a smooch and a snuggle as we were leaving.  All she ever had to do was sit in one spot and wave, confident in the expectation that every soul in the room will soon be in her thrall.  It still astounds me how she draws so much goodwill and affection from perfect strangers....even people who look like they've never attempted to smile in their whole life.

I dare you not to smile watching a toddler eat seaweed salad.

Aaaaand I got to hold her hand a lot.

Holding hands with a child with Downs is like holding hands with a cheribum made of marshmallow.

Her hand is still newborn-soft....

...even though now it smells more like peanut butter slobber and Cheerios instead of Johnson & Johnson's.

Oh, and this week, I decided that she somehow grew even prettier in the Florida sun.

As if that could happen.

It's already kind of a crime against nature for a kid to be this cute.

Rules of Food

MY RULES OF FOOD

by Ava "mini" Clenney, 

as interpreted by Heather Clenney

I am willing to try anything once.... As long as it doesn't appear to be gelatinous.  It doesn't matter if the food item is something the majority of children gobble with gleeful abandon (Ex: mashed potatoes, pudding, yogurt, boogers).   A good rule of thumb is: if it slides, I will yarf.

If Honey Boo Boo Dog is present during mealtime, the pattern goes: a nib for me, the rest for you.  Exception: Cheerios, soup, tofu.

Condiments go in the hair.

Small, difficult-to-pick-up foods go in the floor.

Corn goes in the air vent.

In restaurants nice enough to offer cloth napkins, be polite and coy.  Eat the most sophisticated dishes with relish and flirt with the waiter and every senior citizen in the room.  Convince Mommy and Daddy you are a sweet angel pie when taken out to eat.

Be an unrestrainable food-flinging gorilla child at Taco Bell.

When possible, chase a bottle of milk with a few raw onion slices.  Insist on being passed around the table for a round of kisses.

Blueberries = body art.

Everything tastes better with your foot suspended in the air.

Get excited about vegetables!  They get excited about you.  They tell you so.... Loudly.  And stinkily.

Chocolate cupcakes make one free of all restraints of behavior and bedtime.  WHEEEEEEEEEEEEEEEEEEE!

There must not be more than three items on a high chair tray at a time.  Rid yourself of their presence forcefully and immediately.  Failure to do so may result in the reversal of Earth's polarity.  Best to be on the safe side.

You can get a lot done with a few sharp teeth.  Just look around. We live in Arkansas.

 Enjoy food.  It gives you pleasure.  And energy.

And gas.

Itsy Bitsy

On a boring day in pulmonary clinic....

...what else is there to do besides work on our Itsy Bitsy Spider?

The Zombie Parenting Manual

It amazes me how much parental perspective can shift in the course of twenty-four hours.

One moment, I'm boo-hooing into my longsuffering husband's armpit because Ava's had a choking spell and I'm convinced my instincts aren't sharp enough act in aid to keep her lung clear..... and then the next morning I'm beaming back at her pediatrician whose ecstatic gushing over her health and development plasters my previously broken heart with smiley-face stickers.

In my quest for reassurance -- the kind that no well-meaning Facebook comment can provide -- I'm coming to the conclusion that ALL parenting is fraught with danger, and when you invite another individual into this world, you're essentially handing them your heart to use as a chew toy.  

Just the fact that they exist has he potential to thrill you to tears, as well as to terrify you beyond all reason.

There is no perfect assurance they will be okay....  Or okay as YOU define it.  God's ways being above our ways and all, sometimes his Way is not our preference.  

Maybe this is why I meet so many incredible parents when we're in the hospital with our daughter.  The trials of illness and disability are capable of spitting out very calm people on the other side.  These parents who have walked through the fire with their kids are ALWAYS the first people I would contact in the event of a Zombie apocalypse.  They'll nail the fort shut, calmly assess the food supply, and engage you in honest, heartfelt conversation regarding your child's brush with braineaters until the wave of unded bypasses your burg.  They'll never whine about the invasion or the lack of chocolate pudding packs in the rations.  They're just gonna keep the windows and doors secured and make short order of any zombie dumb enough to dance with a chainsaw.

Gruesome metaphors, perhaps. 

Sorry.

I'm sitting in the teen romance section of a bookstore, and apparently they're all the rage in romance these days.

Anyway, the meat of the matter (ew) is this:

Parenting is a unending cycle of celebration, diligent exhaustion, and fear.

Kid learns how to crawl after months of medical professionals reminding you that their development will be challenged.  You cheer them down the hallway.  After a few weeks, the novelty wears off, and you tire of chasing them.  You pull all the pluggables out of the walls and try to keep a fascinating toy in their hand at all times.  Then your kid discovers the allure of dark, steep stairwells, and it doesn't matter whether you're too tired to chase them or too broke to buy a baby gate.  You make do with a big, ominous box on the landing.

You deal.  And if you've been a little further down a dark road with that kid, you're just excited to walk a bit further with their little hand placed trustingly in yours.

So Big..... Like YOU!

I'm sure that most parents have a moment when they look down upon their rapidly-sprouting progeny and say to themselves, "Holy moly!  I can't believe it's natural for a kid to grow this fast!  They must be putting hormones into our baby food these days...."

Well, excuse the peas and carrots outta ME!

Being the mom of a little girl with Down Syndrome, I thought I had a fair advantage.  Some wishful bit of my heart -- the part that obsessed over having a baby of our own for years and years -- felt smugly, if not wrongly self-assured that I would get to enjoy the smallness and the helplessness of the baby years that mother-hearts crave.

Well, guess what.  Ava Leigh is developing so fast that at seventeen months, my head spins at how rapidly she's learning how to conquer her little world.

And you know what?  I don't mind one bit.  I like the toddler years EVEN BETTER.  

Yes, that's right.  I wrote those unwritable words.  I LIKE my kid as a toddler.

More fun than a barrel of beetlebugs!

She's tossing her cookies rarely, if ever, at all.  That factor carries huge weight.

She wants to mimic everything we say and hear.  The cute stuff.  The bossy stuff.  The not-so-Baptist stuff.  Even the inanimate object stuff.  (I was listening to bagpipe music one evening and I swear on a stack of kilts that she was trying to imitate its wail and keen!)

She wants to go everywhere she sets her mind to, and it doesn't matter if she has to do the splits ten dozen times to get there.  She's gonna get that ball/dust bunny/flip flop and do what she pleases with it.  (Usually what pleases her is to lick it.)

It's our booty, we can crawl if we want to!

Maybe this thrills me so much because I hoped that she would be as bold as her daddy, and not so reticent as I am.  When she was born with Downs, I think I put that hope for her on a shelf and didn't give it much more thought.  I regret having that attitude -- just because Ava has her own unique set of genetic blueprints doesn't mean she doesn't have a lot in common with other members of her family.  I'm truly thankful that she has her daddy's see-it-through-ness, and her great-nana's boldness, my independence, and my great-granddad's wackiness.  The more she grows, the more I wonder if that extra chromosome gave her an EXTRA magnified dose of some trait on one side or another.   

She's sassy...

...affectionate...

...and a wee bit irreverent...

and I know where she gets every bit of it!  

She is becoming so much more herself.... Yet she is an uncanny mirror of so many beloved family members.

I wish that I could reassure so many other new parents of kids with Down Syndrome that no matter how unique their child is, their son or daughter will undeniably possess attributes that will help them identify with other members of their family, whether it's a physical similarity or an expression of their personality.

It is SO important for children to be valued for how they stand out in the world.... But isn't it just as important for them to feel that they belong?

Pooh's Betrayal

Army Crawl, Take One & Two

Sometimes you feel like a plop.....

....then sometimes you crawl.  In your own peculiar way, of course.

Dinner and a Show

 Things are returning to equilibrium in Ava's life these days; she's playing, learning, and eating more than she ever has prior to any of her tummy surgeries.  As parents, have begun to identify her developmental progress as a series of hills and troughs instead of a crescendo opening its mouth to swallow and digest her milestones -- and hey, that's okay.  As our wise pediatrician Dr. O' Neill says, NO kid grows according to a chart.  

I admit that I've purposefully pulled back from writing in this space so much, but only for the purpose of devoting the benefit of my full attention to putting weight on her post-stomach bug and generally trying to create a sense of security for her that gradually diminishes the tearful sensitivity and clingy tendencies she develops when she gets sick.  It took a couple of weeks for her to get over the hump, but once she made it, she was finally sitting down in restaurants gobbling from my fork and waiving down weird strangers in Walmart like her old self.

Viva Italia in Hot Springs!

I've noticed that this time of concentration on her emotional development -- staying home every chance we got, actively engaging her in play, stuffing her with calories in every creative way we could think of -- has fostered another blooming season for her, and she's now revealing to us more of her dazzling little-person personality.  She' a funny little muppet, and really no longer a baby.

She'll mutter and whisper to herself when she's waking up in the morning or doing little playtime tasks; even if most of her vocabulary consists of "da-BA-dee-Gee!", she obviously comprehends the dynamics of language!  

Although we're STILL working toward crawling and walking, she's performing the precursors to these milestones in her own quirky ways.  On more than one occasion I've seen her inchworm across the bed or carpet, dragging her face along she butt-propels herself (*cringe*).  She also takes particular pleasure in pitching pacifiers or toys "overboard" from her bed, then pulling herself up onto her knees to view the damage below.  

I think the thing that excites Daddy the most is her unexpected predisposition toward organization. That's right, I said organization.  If her blocks or Easter eggs aren't in the bucket or bin she feels they should be in, she busies herself by turning in circles on her bum trying to gather them all up so to pitch them in, all the while muttering to herself like an under-appreciated  hausfrau the whole time.

Sometimes we just turn off the idiot box and watch her do whatever she does, the little busybody monkeymess.   

You can't buy entertainment like that.

Well, maybe for a Nutella-smeared graham cracker you can.

Too Careful.

If I hear one more person try to advise me to "let the kid cry -- it's not going to kill her," I just might scream.

My reticence to leave her crying in the arms of someone else while I remove myself from the room has nothing to do with attachment parenting, or her being over-sensitive, or me being overprotective. 

All I can do in order to keep my tongue in check is to remind myself that others don't have the slightest clue what it's like to have to deal with the consequences of allowing her to get ratcheted up.  Maybe I should explain it to everyone in a way that put them in my position.

Imagine you're handing your kid over to a trustworthy, capable adult and walking away. The kid starts to cry.  You tell yourself that it's just a "mommy attachment phase", and keep walking.

Kid doesn't feel well.  Has had multiple stomach surgeries and has issues with keeping food down.  Kid cries so hard that she throws up.  Since she has low muscle tone and difficulty coordinating her swallowing, she gags on some of the vomit, panics, and breathes it into her lungs.  Mom has no idea that she has done this.  

When the stomach flora in her lungs sets up as infection/pneumonia, she'll likely end up in the hospital where she'll likely lose more weight that she can't afford to lose because the infection affects her appetite.  Then, if her infection is managed, we get to go home and put a tube in her nose and tape on her face every night so the damage to her lungs doesn't let her oxygen saturation get too low while she sleeps, damaging her further.  

So yeah, maybe she won't die from crying.

Maybe we'll just get to go home with another shiny piece of medical equipment that complicates her life and disturbs her sleep even more.

Oh -- you mean like the one we went home with a couple of months ago after a random crying/choking/aspiration pneumonia episode?

Hmm?

......

Okay.  I think I'm calmer now.

And now I've explained myself without walking off in tears or isolating us.

I'm seriously trying to forebear.  I am.

I'm not trying to embarrass anyone or even get an apology.  I'm explaining my actions so maybe we can have some quiet understanding on such matters instead of me nursing  resentment in my heart.

That is all today.

Spring Viginettes

I love communing with nature, ma....

...especially when it calls.

My favorite spring outfit.

Pollen, Schmollen!

Joe Cool.

I do not know what you call this magnificent round rolling contraption,

but I have concluded that it is man's finest contribution 

to the entertainment industry.

I think you had better stop right there, Mr. Wood Bee....

!

Nothing like watching the sunset in the arms of a strong, handsome man.