Sunday, December 6, 2009


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Definition: "of or enjoying happiness; specifically the bliss of God."

If I'm coming from the belief that god is love AND the feeling of deep connection between myself and that which is around me at any given moment- a person, a group, a place, a moment, then great green gobs, I am blessed.

For those of you prone to doing the "poo poo" when either anything too good or too bad is said....start collecting your saliva cuz here it comes.

Let's recap

Simon has cardiomyopathy.
He spent four months of his life living in the ICU with regular blood draws, IV placements, life threatening infections, and a couple of surgeries.
Simon stabilized and now lives in a constant state of decreased heart function.
As a result he is immuno-compromised.
He doesn't eat by mouth and has a tube sticking out of his stomach.
He takes 8 medications every day. Most twice a day, a couple once a day and two three times a day.
He has chronic reflux and vomits several times a day (so much better than it's been but still there)
He hasn't been able until recently to be around groups his own age.
He is 'globally delayed' in walking, eating, talking, and problem solving.
Simon has four different Dr's that he sees, therapy appointments, and an early intervention program that we attend regularly but sometimes have to leave because of his immuno-compromised state.
There is no clear plan for Simon's future as it relates to his health.
We live on one income because of this. One income that decreased by about 30% after Jaime had to switch jobs.
That's all true. Fact.

I know you've read this before. It's just one of those things that every once in a while Jaime and I have to put down all at once. It helps in some way. Especially when we're doing a compare and contrast.

This morning I woke up feeling the contrast so profoundly. I was feeling it from the other side though and it felt so great.
Here's the other side:

Simon is a love!
He now gives kisses on request.
He hugs.
His laugh is 100x more infectious than the swine flu.
He has started mimicking words at an astonishing rate.
He is putting more and more food to his mouth on his own.
We have sweet, sweet morning time in bed with all three (plus pup) of us.
I have a partner that I can bump heads with throughout the day and then fall into bed laughing and being as close as possible with in the best way. ;-).
We have family that supports us with weekly babysitting and respite care.
We have family that give us specific praise and affirmation regularly for all that we are doing and how we are doing it.
We have family that call daily to check in, distract, listen, and ask what we need.
We've been gifted with both a Peete's and a Starbucks gift card by them.
They give us $$ every month to fill in the gaps.
We have time to sit with friends, eat good food, watch a movie, and have loving conversation.
We have friends that call a little more than they expect to be called and it's not a big deal.
We have two working cars, one that's completely paid off.
Aside from some colds and the occasional gall bladder removal, we have no other major health issues.
Glee is on TV and we have a dvr.
There is a farmers market right outside our house every Saturday where we can sit on a blanket and have wonderful people come and be with us.
Did I mention that Simon has started giving kisses on the mouth? Most delicious.
We have an exceptional team of medical professionals, non-traditional medical professionals (Homeopathy, cranio-sacral, reflexology), and OT and PT folks holding Simon in their vast knowledgeable thoughts.
We have amazing aunties and god-mothers that 'hand me down' clothing and toys from their very well stocked closets. ( I do admit that french baby clothes are the bomb!)
Simon is thriving and hasn't been readmitted to the hospital in over a year (not counting his G-tube placement).
His heart has slowly but surely improved.
We have swimming and school and mostly great nap days.
We have visiting Fitchs and Dipanes coming our way.
We have holidays with Jenetts coming up.
The latter two are both things that are wholly sweet and wonderful (aka I really love my family).

We are, in a word, blessed.

All right, it's the next day and Simon is pretending it's a no-nap day. My back hurts, and it's frickin' cold.


Somebody looks good in orange

No, I mean really good

The chin grab is new. I'm thinking it means that he's either going to be a Rabbi or Hip Hop B-boy

Here's cousin Talia getting one of those aforementioned kisses. Too sweet!


Krista said...

those kisses are super cute! Molly recently started doing those, too, on demand. She wants to kiss strangers in the store. The 'pucker' looks exactly like Simon's!! Happy Holidays!!!!! See you all in January!

Eleanor Chrom said...

Those eyes are absolutely mezmerizing! No wonder everyone wants a kiss.. me too!
See you all this coming weekend. Can't wait. love, Ellie & Sol