Wednesday, July 15, 2009

Live Like You're Dying

Locations of visitors to this page

Jaime here:

I had a good cry on my work today. No apparent reason. Just feeling a little melancholy, and really glad Simon is alive and just letting go of or saying hi to the fear that's still there. There's been a thread on our listserv about how a lot of us fall apart when things are calm and quiet and "good". It's a little unnerving sometimes but I also know it's good. The hard feelings are there whether or not I am aware of them, so I figure it's better for them to come to the surface than stay locked up in the "I'm fine, I'm okay, everything is under control" place I often live in.

One of my pet projects has been to put together a slideshow of pics of Simon from the last year with snippets from different songs (go Windows Moviemaker!). This is one that I definitely want to have in the piece. The lyrics pretty much sum up how I'm trying to live my life these days. It's what I see Simon doing and it's amazing to watch.

Live Like You're Dying
By Lenka

One of these days you'll be
under the covers you'll be
under the table and you'll realize
all of your days are numbered;
all of them one to one hundred.
All of them millions.
All of them trillions.
So what are you gonna do with them all?
You can not trade them in for more.
no no
Chorus 1:
Take every moment; you know that you own them.
It's all you can do, use what's been given to you.
Give me a reason
to fight the feeling
that there's nothing here for me.
Cause none of its easy,
I know it wasn't meant to be.
I know it's all up to me, I know it's all up to me,
So what am I gonna do with my time?
Chorus 2:
Ill take every moment, I know that I own them.
It's all up to you to do whatever you choose.
Chorus 3:
Live like you're dying and never stop trying.
It's all you can do, use what's been given to you.
All of the moments you didn't notice;
gone in the blink of an eye.
All of the feelings you couldn't feel
no matter how you try.
oh oh
Chorus 1
Chorus 3 x2
oh oh

Simon has been really into a new game where I plug his ears with my fingers or cover them with my hands. He makes a funny little squeak and grabs my hands to pull them away and push them back in. It's very, very cute.

Here's a picture of Simon trying to tune into his home planet (those are blocks on his ears, for those of you who are wondering):

Monday, July 13, 2009

New Week

Locations of visitors to this page

It's a new week.

We had a lovely weekend. Simon slept and napped like a champ (huge shocker there- read sarcasm here- see last post)

We went for lovely swim with Auntie Dre and while it wasn't the longest nap in the history of Shimmy- we both got a nice break this afternoon.

Simon is 15 months old! He hit that milestone month last Thursday and while I for sure wasn't in a place to appreciate it that day, today I am in awe that we have once again beat most odds and are still trucking along.

And, we're not just trucking. We are miracle-ing it along. Simon is one of those kids surviving cardiomyopathy in that miraculous manner where they don't show that they have this very serious life threatening disease. I've said it before that it's a blessing and a curse so I won't go into that again. What I will say however is that it's a huge, in your face, "you must live this lesson or I'll punch you in the face with it"- teaching that I am working hard at really learning.
What lesson you say? My Rebbes from Hebrew School are laughing their asses off right now because it comes from the bible. Deuteronomy chapter 28 verse 47. Live with joy in your heart and see the abundance in all things (or else all these terrible things will come to pass that we've just mentioned and are about to expand on).

Gettin' Biblical :
I'm working with my cousin on her Bat Mitzvah and her portion of the Torah is a doozie. It's a completely overbearing and dry like the Kalahari chapter with the give thanks to god stuff and "here's all the dastardly things that will happen to you if you don't" kind of chapter.

Both Sophie and I were having quite the time getting our biblical teeth into it (her's just getting cut and mine about to fall out for lack of use) when a bright light spotted on one particular verse nestled deep in the swamp muck of "here's how you will suffer" and if you blink, you miss it. (Thank you Rebbe Jhos 'bright light' Singer.)

There we were walking down the street talking about how easy/hard it really is to live with joy in your heart (coming to the conclusion that it is in fact really frikkin hard) when it hit me. Simon demands that of me each moment of each day. I know I am not aware of it all the time but I gotta, it's sure is more 'up' for me given the fact that I spend most of my time thinking and feeling, and interacting with a 15 month old wonderkin that:
a) Might not make it to his next birthday
b) Could end up living with severe impairment and disability
c) Might need to live his life in a wheelchair with O2 administered
d) Could require a heart transplant later in life
e) Drop dead of sudden cardiac arrest at any minute

{ All of these, and more, are possibilities for people living with Cardiomyopathy}

While these are less likely given his current state, they are by no means off the table yet with Mr. Shimmy and in fact are still close to his place setting at the table given he has yet to start walking and asking his heart to exert that kind of energy on a regular basis.

And what I have no control over (among the mondo laundry list of things) is savoring each smile, each new giggle, each sweet baby breath in my face, new sound, new frustration at not quite being able to master something yet, each grasp, each falling asleep heavy baby in my arms moment.

99% of my day I cannot help myself and I am overcome with Joy filling my heart and spilling over that I get this. I get to have this. Because almost a year ago, and for several months after, it was continually threatening to go away.

Yes, there's that one percent of the time when I am your typical new parent about to lose their shit when their kid skips napping two days in a row or maybe in a year or so when the tantrum in the supermarket threatens to topple the grapefruit display.

But really, I am not your typical parent. There are those of us out there, walking mostly invisibly among you, that are not typical parents.

We are the students of incredible teachers that demand of us to live out Chapter 28 verse 47 in heartbreaking (pun intended) ways.

It's the hardest thing I've ever done.

Thank you Simon Lev Fitch-Jenett
Thank you.