Wednesday, April 9, 2014

Addendum to SIX!

Every time I think about Simon turning 6, I feel a pang of sadness deep in my heart.  It surprises me each time. It's a very strange experience to feel sad about a living child's birthday. I've been wrestling with this for a few weeks now and think I've identified what the sadness is about.

When Simon was critically ill in the hospital and we were faced with the very real possibility that he might die, I couldn't help telescope out our lives over the coming 5, 10, 15, 20 years.  I thought about how painful each holiday, celebration and especially, birthday would be if he died. I spent real time wondering how many years would have to pass before those events were filled with mere sadness instead of anguish. Every birthday is a reminder of that time when I was mentally erasing Simon from my future as I stared into his tiny face.

His birthday "should" be a time of joy, but I have found that for parents like us, joy and sadness slip into places you least expect them.

So be it.

Every year that passes also marks a year closer to puberty.  Most parents have a sort of comical dread of puberty- of attitudes and pimples and awkward conversations.  Our dread of puberty is borne of PTSD, of never EVER wanting to back to where we were when Simon first got sick.  Stories about kids who were stable for years and then decompensated again when puberty hit are not uncommon on our Cardiomyopathy listserv.  There is something about the hormone soup and accelerated growth that upsets cardiac stability. Stability we have fought  for until we were half-dead ourselves...

I've been trying to enjoy this "coasting" period we have had for the last few years (at least in terms of heart disease). The idea of Simon getting that sick again and going back to that life of constant terror and disruption is almost too much to face.  It feels like sooner and sooner I'll need to get back up on my perch to scan the horizon for signs of trouble.

Soooooo Simon turning  six feels...surprisingly complicated.

And it's amazing.


Off to have a celebratory dinner with our surly, amazing, thriving, feisty six year old superhero.

Spiderman/crossing guard at attention

Monday, April 7, 2014


This was the first time in six years that Simon ever expressed any interest in his birthday. He asked for two specific things (several thousand times) over the last month. "Is Elsa coming to my house?" and "We can have my party at Gymboree?"
So....he got both! He nearly fainted when you-know-who came to the door on Saturday and ran himself into an ecstatic puddle on Sunday.  
Take a look.
OMG! Look who's in my bedroom for my Birthday Party!!

I'm thinking..."How Cool Is This?!!"


Thank you for the Balloon Sword. Do you want to marry me?!

This is just unreal!

Simon's Mexican Wrestling cape will be put to good use


Jedi Knights sparring

Elsa is too cool!

 This is just the best birthday ever!!

Thank you Mama and Mommy! 

And I get a Princess Dress?! 

Marble Mania with Mamaw!!

Day 2 Birthday Part II

Storm Trooper ready to go!

 High flying super heroes!

Working on our Olympic Skeleton riding

 Dude! This is totally awesome!

Bubbles make everything better

Please note the larger kid on the left

Simon and Citlali reunited!

Good Peeps. Good Times.

This was Simon at the end of a long day, just running for Joy!

A moment of repose...

 ...and we're off again!

Happy Boy!

Tired Boy

He turns 6 on Wednesday. I'm having a hard time believing it.