Saturday, August 1, 2009

One year ago...

One year ago today, almost to the hour that I am writing this, Simon was admitted to hospital and diagnosed with Dilated Cardiomyopathy.

It was a day where I think I came close to understanding what "living hell" really might mean.
And, here we are today with a beautiful boy, an incredible community and family, and so much more love in our lives than I could ever imagine.

Simon is still in heart failure but he is also thriving and stable and living with a fire in his belly and a smile on his face.

We are so blessed.
All the grandparents, Auntie Jen, Uncle Frank, and cousin Maya, plus several of our closest friends joined us for a picnic in the park and we sat for a good 10 minutes, surrounding Simon and sang to him. It was a chance for him to see and feel, really physcially feel, the circle of people that have been 'holding him' for the last 365 day cycle around the sun.
For sure the circle would have been much wider (I'm thinking 'round the perimeter of the city of Oakland) had you all been there in person, but it was still incredibly sweet to watch him be engulfed and take in the love. We sang the "oh little Simon, little Simon Lev" song, making up versus as we went, and he just got all still and focused, taking it in.

He's incredible. Really a Superman. Here are some shots from the day.
Superman gets ready to take off with the help of PopPop

Soooo Happy

When the little man wakes up we're off to the ICU to deliver cookies. Here's the flyer that Jaime made up for the folks at CHO. I would say it's good for you too (sorry the cookies don't translate through so well)


One year ago today (August 1, 2008),
you came into our lives
when Simon was admitted to bed 4 in acute congestive heart failure.

August 3, 2008

As you may remember,

there were MANY ups and downs,

but your love, patience and excellent care brought us to today…

You are all working miracles every day.
Thank you for giving us this year with our son.
Jaime Jenett, Laura Fitch and Simon Lev Fitch-Jenett


Eleanor Chrom said...

Surely Simonlev is blessed.All our love, Ellie and SolR.
See you in a month.

Alexis and Dane said...

Oh, just catching up with Simon Lev and crying in front of my computer. You all are incredible. Love you all so much from afar (now Ohio). Look forward to meeting Simon one day soon in person. So much love. xo