Monthly Archives: October 2012

Everyday Fire Drill

Recently, SGM and I had a conversation more than six years in the making now.  So hard to believe.  We talked for a long time revisiting the path RM has brought us along since her grand arrival.

It was amazing to listen to daddy talk about the intricate details of our every day in those first years.  Sleep deprivation ranks at the top of the list of inconveniences.  What astounded me most throughout this conversation was that though I remember everything, I cannot recall much of the details on my own.  SGM talked about the “fire drill” we had mastered at 2am.  How eventually, we learned the sequencing of tiny gurgling sounds that preceded the projectile vomit.  If we were quick enough on our feet, clamping feed lines and haranguing huge plastic syringes, we could “vent” her belly of the gas pressure before the formula erupted out of her nose and mouth like a sour-smelling Mount Etna.  As he ran me through the drill, I realized I had completely blocked out that joy.

Good times.

Then there was the open-heart surgery at four months old.  Maybe because of the relief to have something that could be fixed, that seemed a good day.  I remember every detail of that clearly.  SGM and I had coffees and magazines and the whole private waiting room to ourselves.  Private waiting room.  You know, because your kid is having “real” surgery this time.  Why should you have to sit in the “regular” waiting room when your infant’s chest is being cracked open? Right?

The whole intensity of the situation seemed lost on me.  I just had faith that either way this was the journey and the results were predetermined.  No matter the outcome, we were blessed by this child for however long God lent her to us.  Right?  Because this was our everyday fire drill.

The PICU was new to us also.  We were in the Big Leagues apparently.  But again, the concept was lost on me that this meant I was to be more frazzled somehow.  We had already brought her through several other surgeries and procedures.  We had already sat in the “regular” recovery room with her enough to be familiar with the entire rotating staff there.  This was our everday fire drill.

I remember the chest drain sticking out of her, filled with blood, pouring into a bag at the foot of the bed.  She was still on a ventilator with wires monitoring every last thing imaginable.  But again, for some reason this was all ok.  We stayed with her for a little while, met the staff that would be watching over her, and we went home to our other two kids.  This was our everday fire drill.

What is so strange to me looking back now, is how overwhelmingly upset I was by comparison when RM came back to her room from her first surgery with her feeding tube.  The shock of seeing a hole cut into your child’s belly and a long, ugly tube coming out was too much for me.  How quickly I grew to love that tube for saving her life so many times.  This was our everday fire drill.

The journey has been long, often exhausting, and has left me on medication for anxiety disorder.  There are still so many unknowns about her future, both medically and developmentally.  This is our everyday fire drill.  But through it all, whether I remember every detail or just a snapshot of the tougher times, my baby girl has made this life brighter, more joyous, and more hopeful.

From StimCity’s facebook Wednesday: “Tonight I witnessed my baby girl in the awe of discovery as every curious expression crossed her beautiful face – the raised eyebrows, the wide eyes, the pure joy of experiencing something new and truly being in the moment – she learned the feeling of floating in water while taking a tubby. No, not earth shattering. Just so very cool to see her making such a connection.”

Oh, Baby, you bring me such joy.  Our everyday fire drill suits me just fine.

RM at 3yo smiling while recovering from Swine Flu. Sometimes, you just have to make the best of it – look where her feeding tube comes out of her jammies!


Rose Colored Glasses?

Apparently, I am determined to halt time in its tracks.

I have been touting for weeks how great RM is doing in her “new” glasses that she just got about six months ago. *ahem* But as I read THIS I realized yet again that it has really been twice that long since her last eye appointment, and that means the glasses are from A YEAR AGO.

I am SO ON TOP OF THINGS.

I started wondering why I seem to have such a difficult time with this crap.  From the moment RM was born, we have had appointments for this and that so frequently that I needed a huge schoolhouse-sized dry erase board in my living room to keep track.  But those days slowly faded away as she grew healthier and so faded away my own talent for organization.  I am kind of a mess these days by comparison.

I once had itemized checklists for our three major shopping stores – grocery, wholesale, and Target.  We always had one of everything in stock, we never ran out of anything.  My house was a well-oiled machine and we had real dinners every night.

I am sure I even had a Binder of Women.  [sorry, couldn’t resist]

Anyways, these days we eat whatever is most convenient at the moment because I never remember to take something out of the freezer, we are always out of everything, and me and the dust bunnies high-five as we pass in the hall.

Oh, and those glasses RM got last year? Well, no wonder they are warped and falling apart.

RM in her first pair of glasses. November 2011.

I thought I was being so proactive this time, seeking out a new pair of indestructible glasses for RM because she was now wearing her glasses all day at school.  I was so proud that it only took six months for her to get used to them.  Especially when her ABA program started out praising her for keeping them on for a full minute.

But apparently it has been a year.  A full year.  365 days.  Slowly inching from one minute to two to ten.  Now she wears them fairly consistently.  Never reads without them.

Did I mention she is reading now?

Reading at bedtime. October 2012.

Time sure does fly when wearing rose-colored glasses.

RM’s new sport goggles. 10/16/12.

Cheers, my friends.


Baby, You’re a Firework [Revisited]

[Firework by Katy Perry]

[This post was one of my first and continues to be a favorite of mine.  It lifts me up when I am feeling overwhelmed by the hard work it takes to let my Baby shine…]

Go ahead – Ask my crumbling shower walls.  They’ve heard it all.

Taken a beating and then taken some more. 

Good day?  Bad day?  CRAPTASTIC Day?  It’s all in the song…

How often do you find yourself completely enveloped in a song that seems to speak directly to you and tell of your heart in that very instance?

At the same time you are experiencing the sounds of the music with your ears – your eardrums vibrating wildly – tiny hairs across your skin dance rhythmically, your senses are heightened as every neuron in your body fires in syncopation.

The arousing intro… that first verse that captures you… the chorus that makes you want to sing your heart out… the bridge that lulls you back into the theme… before bursting forth from your very core in a declaration of every emotion that has been buried within you… slowly building and building over time… you can no longer contain it… it takes on a booming voice of its own you never thought resided inside you…

“Baby, you’re a FIREWORK!”

One of the very first things we noticed about RM was her response to anything musical.  Whether it was a lullaby, a Signing Time dvd or a Sara Evans song.

I have always sung to my children before they went to sleep.  A favorite of late is “Somewhere Over the Rainbow”… at Christmastime it was “Silent Night”.

One evening, as I was singing to my delicious babes, snuggled in tightly together and smelling sweetly of baby shampoo, I noticed something new.

Or rather not new – but different.

If you love a child with autism, you are likely familiar with the term ‘hand-flapping’.  It varies from child to child.  It’s a form of ‘stimming’ or self-stimulating behavior – a mechanism by which many of our kids soothe and comfort themselves, or simply burn off an excess of nervous energy.

RM’s hand-flapping is particularly her own.  For several months prior to her autism diagnosis, us proud and ridiculous parents thought she was brightly finger-spelling to herself in sign language.  Go figure.  She ‘flaps’ in a puppeteering motion with one hand close to her face as she stares at the movements of her long fingers.

Anyways… this night as I sang to her – her fingers began to move in such an orchestrated and delicate dance – ebbing and flowing back and forth with such precision, reminiscent of John Williams leading the Boston Pops through a 4th of July rendition of the 1812 Overture.  It struck me so hard it nearly knocked the song from my lips –

My child can SEE this song I am singing.

“…Cuz, Baby, you’re a FIREWORK!…”

Synesthesia is the neurological and involuntary “crossing” of one sensory or cognitive pathway with a second.  For example, a person who experiences synesthesia may hear a car horn and simultaneously feel pain, or a word written on a page may appear as each letter a different color.

 I KNOW that my child has gifts. 

I KNOW that she sees things most of us will never see.

I firmly believe that not only is her interpretation of the world a magical one – it is valid.

Though she may not have the words to express the song in her heart today, I know she is experiencing my love with a burst of colors that nothing can compare to.  I know that my love for her will carry her through the times when she feels like she is drifting through the wind, hoping she could start again.

I know that when her skin feels paper-thin and her bundled nerves feel like a house of cards that are caving in – my love will save her.  Not because it is fierce and strong and unyielding to the exhaustion of a long day with autism, but because I know that she feels my love in more ways than one can imagine.

She feels it tightly wrapped around her always – a booming firework exploding in light – smelling of sweet wildflowers and spring – and tasting like chocolate.

“…Baby, you’re a firework!… 

C’mon, show ‘em what you’re worth!”

 ♥

“…Even brighter than the MOON – MOON – MOON…”

*

 


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