Aerophobia

Looking back at my 37 weeks of pregnancy, I remember being shockingly amazed at the baby’s puzzle piece development each week.  Need a heart?  We got that on week 5.   Need a liver?  Oh that’s week 14.  Just like that, no big deal.  Gone is the man physically putting these delicate pieces into place, no one seaming the organs all together to function as one digestive system.  Just these microscopic cells magically forming and multiplying to produce something with a heartbeat.  It was the hardest task for my body to endure – grow a freaking human being inside of another human being – but it was so odd being on auto-pilot.  Oh you mean I don’t have to actually do anything but gain impossible-to-lose pregnancy pounds?!  Perfect.  Let me get back to my DIY nursery decorating and TCBY then.

Little did I know, auto-pilot had a few scotches before takeoff.  Got a little off path with some holes in the heart, minor turbulence over the diaphragm causing a weak area,  late to arrive with the neurology connection plane, and took a whole new flight plan with an extra 21st chromosome.  Same beautiful end destination, just an unexpected route.  The control freak in me was right – I should have been flying.

Month by month we’re slowly learning the damage done from Lyla’s flight in utero.  You feel like you’ve conquered the world by successfully tackling gut-wrenching heart surgery.  But like a worst nightmare during post-op rounds the cardiologist gives you another BOOM! – here’s a diaphragm defect we found that will more than likely need another surgery next summer.  Dude, she’s healing from heart surgery at 9 months old!  Then comes the recent devastation of a possible epilepsy diagnosis from infantile spasms.  Regulation of the seizures would be possible, but the medication outlook is brutal.  Medication called ACTH that would take this soulful personality straight out of this porcelain body during it’s first month’s attempt at treating this mysterious condition.

Each time one of these new medical terms is thrown our way, of course I do what all doctors tell you not to do…  Hit up Google.  I get it out of my system and for 5 hours straight just tangently search and search the internet for drawn-out definitions, medical history, hopeful best outcomes, lump-in-your-throat worst outcomes, painful images, symptom-confirming videos.  I basically scare the crap out of myself.  I don’t know why I do it, maybe it gives me a tough exterior shell for the endless appointments we’re about to have with these change-your-world specialists.  Preparing myself so no more curveballs can be thrown our way.  Sick of the curveballs.

So back to Children’s we went 3 weeks ago.  The 3rd time since walking out the doors with a new heart, the 8th time total in her 10 months of life.  Down the scrub-filled 1/4 mile corridor of Longwood Avenue we went that also houses Harvard Medical School, Brigham & Women’s, and Dana Farber Cancer Institute.  It’s a medical meca dedicated to lives like ours.  We are forever thankful.  But I hate this drive.  Through the giant revolving door we go to gaze upon a hospital lobby that’s never short of an ah-ha moment. 

We’re here.  Many will help us here.  We are not the worst case here.  Everything will be alright.

The famous Dr. Duffy (who I couldn’t help but sing the other British blonde petite Duffy’s “I’m beggin’ you for mercy. Why don’t you release me?” over and over again in my head as I’m trying to seriously stare at this 80 year old man with Woody Allen thick black glasses), well he set up a 4-hour EEG to be done at Children’s when we get back from this glorious vacation in Kauai.  We shall see then if we have yet another checkbox to add to the babe’s medical conditions chart.

But until then Kauai is helping me focus on the “now” instead of the “what if’s”.  Some good advice that a blog follower Kim gave me as we got the pounding bad news. On top of bad news. On top of bad news.  (If you don’t know Kim, she’s the one that’s petitioning through the Comments section each week chanting “Book! Book! Book!”)  It was good advice my friend as I was able to just ENJOY this breathtaking island.Sunrise walk our first morning.  We were waiting for the sun to come up from the jet lag.

Kauai: a place that simply overtakes you as soon as stepping off the inbound plane’s stuffy off-ramp and gliding into the fresh open-air terminal.  They’re so chill here they don’t even have walls at their airport!!!  We drive into town through the winding cliff roads and all of a sudden can’t even remember the word epilepsy.  Days full of tree-topped balcony conversations over Coors Lights, browsing through the outdoor bird-chirping shopping pavilions filled with the aroma of kona beans brewing at the most content coffee shops.  Mornings spent playing with babies as the sea breeze flows through all 37 open windows in the rented mansion, afternoons lounging on the sugary sand as the coolest moment happens in a flash of a second – a huge navy whale leaps out of the wavy horizon to expose his entire massive body and come down with the largest white-water splash seen from a mile away.  Too quick for your camera sitting in it’s bag still.  But enough of a moment to bank in your “Coolest Shit Ever” brain space.

And we saw a whale from the Kilauea Lighthouse as well!

Out of the hundreds of tiles I could have glanced down at, this was the one my eyes stumbled upon. Preach it sistas!

This is the location to get away from it all.  Some magical mist in the air that Puff the Magic Dragon is huffing out to make the word ‘stress’ disappear from Webster’s Dictionary.  The greenest greens you’ve ever seen in the luscious foliage.  The bluest of blues as waves come tumbling into a nature-carved Queen’s Bath.  The pinkest of pinks as hibiscus flowers pop up all over the bending dusty roads.

That is seriously tree bark.

A place that promotes no regrets enjoying lunch with your family & friends huddled around the large screen TV watching The Best of Saturday Night Live, knowing full and well that you should be out exploring some section of the Kauai Visitor’s Guide.  But for some reason laughing hysterically over cafeteria lady-dressed Chris Farley’s dance to Sloppy Joe is well worth the sacrifice of a sunny afternoon.

So relaxing that someone may be able to fall soundly asleep on the 2nd story balcony overlooking the stars.  And this someone may have been celebrating her 30th birthday with the best dinner she’s had in years, complete with a warm bananas foster atop caramel-sauced french toast a la mode.  Yeah, that was good.  And this someone may have woke up at 1:30am in the outdoor chase after all of the partygoers had already retired to bed.  And perhaps this person could wake up with 52 bug bites on her feet and ankles.  Literally, 52.  Must have been the sweet banana caramel sauce flowing through the veins still!

It’s an island you can mesh with the local sitting next to you at Java Hut that figured out the secret 10 years ago by moving here from the snowy Northeast.  Somewhere that makes you contemplate in detail for a quick 15 minutes about how you can shuffle up everything and just move here without a second thought…

We could rent Dad’s condo, Troy can work from home on east coast time, I can take up island photography, Lyla can become a local naked bronzed beach baby playing in the sand.

Wait a minute what the hell am I talking about?!??!!  …Vacations will do. 

But I guarantee if you ever visit The Garden Isle, this conversation will take place in your head.  You can’t help but daydream because the whole island just feels like home.  No high-rise hotels since buildings aren’t allowed to be constructed higher than a coconut tree.  And that seriously is the rule.  Living to just have a good time.  Everyone enjoying what Mother Nature granted Kauai with.  Beaches tucked away off of the main roads where you have to adventure out with a small hike to know they’re even there.  Surfers out to top the last rush they had off of the north shore’s notorious seas.  Shops shutting down at 3:00pm to take advantage of the 20-foot wave warnings.  No rush, no honking car horns, no “Why didn’t you answer your phone this afternoon?!” - because 1:00pm naps are also a given.

We will be back to my favorite place on this planet, hell maybe even make it an annual trip.  The intriguing island calls you like the Sirens onto it’s rocky coast.  Places like this exist to be discovered.  Relished.  And there’s just so much more that I want to uncover here, much more reality I want to forget about for a while.

Our last day on this spectacular 12-day jaunt, I must trust our pilots to safely bring us back to the mainland.  A trust towards auto-pilot that is obviously hard for me to give, but must accept I don’t have the capability to control it all.  Some things I’m required to give to the hands of others.  Whether they be pilots, doctors, Lyla’s future teachers, or an almighty creator forming a brother or sister for the little tot – these are trained professionals who do what they do for a reason.  They fly better than I can, they heal with their knowledge of medicine, they teach with skills not possessed by this engineer, and they create imperfect humans with individual purposes. 

Because none of us are perfect, and we each have a purpose.

So take us away auto-pilot wherever we must go.  Here is my trust in you that all will be well with the routes we take.  And it wouldn’t hurt if the destination was Kauai again.  But most of all, I trust in you that it will be a purposeful ride.