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.

Release.

I regret that it's taken me over a week tell you about the lovely time we had celebrating World Down Syndrome Day last Friday (3/21/14).

The truth is, I've had a lot of serious thinking to do before I let my fingers do the talking.

I'm a bit ashamed of myself, to be honest.  You see, this was the first gathering of the Down Syndrome community I had ever sought to attend, even though I've been invited to everything the Buddy Talk Facebook community has put on.  Naturally, attendance was out of the question when Ava was in bad health, but I still chose to keep our family on the sidelines long after I felt comfortable blowing-and-going at the speed of a modern family.

I can only put this out there in hopes that you won't judge me harshly;  my only defense is that my actions are a product of fear, and that fear is rooted in an inherent drive to protect our daughter.

I wasn't scared of what it would be like to meet so many other children and adults with Downs.  Heck, they were the life of the party!  Being around so many sunny, social individuals, one couldn't help but smile the entire time.  It was a huge encouragement to watch them playing rowdily with their siblings, or making their rounds for conversation.  In my eyes, each one was a puzzle piece of Ava's future I could put all together for a peek into what appears to be a very promising adulthood.

What I DIDN'T look for -- and what I was scared of finding -- were children who were ill.  I guess in my mind, if I saw quite a few children there who were weak and sick, that would also mean that possibility would be looming over Ava's head.  

Most all parents of children with Downs have that doctor's handout tucked into a folder somewhere -- the one detailing all of the screenings that have to be done throughout these individuals' lives.  A list of bullets to dodge.  Timely reminders that You're Never Out Of The Water Completely.

I find it so hard to reconcile those possibilities of future difficulty with her present state of being.  We still struggle with gaining the upper hand on  a few developmental issues, but for the most part we try to let Ava be the messy, pretty, über-social toddler that she is.  We reminder ourselves that bringing a child into the world is ALWAYS fraught with dangers and uncertainties, and that maybe we're fortunate to be better equipped than most to watch for hers.

But back to the gathering: I was so busy being nervous about what I might see someone struggling against, it took me a few long minutes to settle into the reality of the scene: I seemed to be the only one cowering like a lightning-licked goat; everyone else was playing and moving from circle to circle. I think the moment I finally allowed myself a gulp of oxygen was when I ran into a friend of mine from the Buddy Talk board.  Her son, Drake, was born two weeks before Ava, and let me tell you, this child will soon take the modeling world by storm.  I mean, this baby boy has eyelashes that would melt an ostrich's heart.

I'm pretty sure a betrothal will be arranged soon.

Hey, it's never to early to lay the foundation for a timeless romance.

Anyway, it took me a beat, but having that face-to-face contact with another family who seemed to be having nothing but fun out in the late-day sunshine just helped me to relax and be present in the moment.  

We batted balloons.

We took pictures.

We couldn't believe Daddy could open his "mouf" so wide.

We laughed watching the little feller with squeaker shoes go on a one-man dance parade around the event announcer.

And when we left, I wasn't thinking about surgeries or aspiration episodes or growth charts.

I was thinking about hundreds of blue and yellow balloons, one for each chromasomally-blessed person we loved, floating up like prayers of appreciation for their presence in the world.

And I was also thinking of Mexican food.

And Fraggles.

(Because this is how my brain works.  Hey, SQUIRREL!!!)

Peacemakers.

“4:1 I therefore, the prisoner of the Lord, beseech you that ye walk worthy of the vocation wherewith ye are called,

With all lowliness and meekness, with longsuffering, forbearing one another in love;

Endeavouring to keep the unity of the Spirit in the bond of peace.”

- Ephesians 4:1-3

At end of many days, when our family's attention turns toward our preparation to rest, I often find myself wrestling with a busy mind.   There are so many encounters I have learned to expect when we are out with Ava -- encounters which spark questions about her health and her general condition -- which are unavoidably imprinted upon my brain.  These conversations are stirred like a soup over a fire that is stoked throughout my day with questions and assumptions of my own: What did this person mean by that question about her ability to do such-and-such , or Does he seriously think that her difference is something to apologize over?

Some nights I find it difficult to put these conversations to bed.  As a result, I dismantle every word, every reticence to make eye contact, every insensitive pry, and my wounded heart begins to accuse the person who might have had more questions than sense.  

I build walls around my "right" to be upset with them.

Within those walls, I build towers to look down upon those who have offended me.

In my mind, I pour my own so-called wisdom-earned-through-experience upon their ignorant heads, and then I sit up there all alone in my tower and feel really smug about shutting them down.

But wait... Isn't the whole purpose of wisdom to open UP someone's mind to the truth, rather than to dole out a verbal spanking and send them on their merry way?

I am learning very quickly from those who seem best adjusted to unforeseen circumstances regarding their children: 

Look beyond the questioner's inappropriate words, and into their intentions.

Perhaps they're asking "how bad is it" because they'd want to know how gently to treat my child.

Maybe they want to know how many health problems she's had because that's something they can easily sympathize with, and they are truly concerned for her health.

What if  a well-thought out query such as, "How does that affect her life?" comes out sideways in a question like, "So what all is wrong with her?"

Or what if I'm just tired that day, I'm hungry, or I'm having a pleasant stroll, and don't feel like standing around and delivering detailed dissertation on the numerous expressions of an extra 21st chromosome to a perfect stranger?

All of these moments have happened, and will continue to happen.  I'm at peace with that.  There are no hard-and-fast rules that guide common discourse anymore, and so anytime we leave the security of home, I can count upon Ava's quirky sweetness to draw attention and spark strange conversations wherever we go.

I can't fight a one-mommy battle to bring the world to a perfect understanding of what is appropriate to ask a parent of a child with Down Syndrome.  I can be my child's advocate and, for now, her voice, but one day, she will be able to speak and react for herself.

And when she does, I want her to have learned through her parents the importance of forbearance.  I want to guard her against the dangers of being controlled by hot-responsive emotions.  

I want her to speak clearly, and with honesty, in full knowledge that someone's false assumption of her being has no bearing upon her dignity.

I believe with all my heart that she is called to be a peacemaker.

And as her parents, so are we.

AVAMONSTER!!!

Ava's signature growl.

Patent pending.

How To Sleep With an Octopus

Bedtime has become a bit of a tangle these days.

Not that it's anybody's fault.  Ava still happily adheres to her sleep schedule, receiving her night-night kisses and going down with a minimum of fuss each evening.  She's developed a funny rhythm of babbling herself to sleep while she rubs her tiny  pink fingers across the mesh wall of her bassinet.  That scritch-scratch, scritch-scratch has become a comfort sound to both Daddy and I, signaling to our weary brains that it's time to find a haystack and put down our horns.

And so we do.  Or rather, we begin to.

Birdbaby usually succumbs to the sandman first, then I follow suit, leaving Daddy to stare at muted reruns of The Big Bag Theory on our tiny television until, hours later, he miraculously forgets that he's awake and falls asleep.  Then it's my turn to startle to the sound of Ava's every mumble and shift very hour on the hour.

Between the pair of us, I think that Jason and I were so nervous about her oxygen and pump lines wrapping around her neck while we slept in oblivion, we had accidentally developed a schedule between us that kept at least one of us responsive at all hours.  

And so you can imagine the excessive caffeination and droning on about "braaains" that ensued during our accursed daylight hours.  I also began to notice that Ava was beginning to expect a reassuring pat on her booty every time she whimpered in the night.  

In short, we no longer liked the night life.  We did not care to boogie....on the disco round.

Yeah.

Now let me tell you about the modern miracle of tape.

After all of this ill-tempered flip-floppery, one of us became desperate enough to get smart, and the other one of us got pushy enough about dietary supplements for us to both get our sleep cycles sorted out.

Jason had the brilliant idea of running Ava's oxygen line down the length of her back, away from flailing arms and prying fingers, and affixing it loosely to the ankle of her pajamas with medical tape.  Her G-tube line usually runs in a similar direction out the bottom of her pajamas, and we loosely take up any extra length with a hair clippie affixed to the end of her bed.  That way, no extra slack is snaking around, but if she pulls it, it will give a little and not cause her to shriek in pain.  Sometimes, for good measure, I even throw a heavy baby blanket over the lines at her feet so they'll be less likely to form loops that wrap around her tiny feet as she performs her somnambulistic circus.

Once we felt reasonably assured that Ava's safety was reasonably secured, Daddy and I began taking the appropriate amounts of melatonin to reestablish our sleep cycles.  For me, that meant a wee itty dose.  For the coffee gobbler lying next to me, that meant... More.  But we still found that we could wake up (albeit a bit cross-eyed) if the need arose to let out an insistent dog or soothe a midnight baby gas attack.  

After three nights of healthy sleep, I am pleased to report that we are looking less like the Addams family and more like..... Oh, I don't know... The Beverly Hillbillies?

As long as we look healthy and rested, highwater pants and a rope for a belt seem fairly inconsequential.

Big Bow Wrestling Match!

Mommy wins.

Every time.