Sunday, August 1, 2010

So Far

Locations of visitors to this page 

It is two years to the day that Simon was diagnosed with Cardiomyopathy. It was two years ago today that we started our four month stay in the ICU at Children's Hospital Oakland. It was two years ago today that began the absolutely terrifying, most devastating time in my life when I learned what it truly means to be broken and in despair.

It was also two years ago today that I learned some of the deepest lessons in living in the moment, savoring joy (I mean truly savoring it) and allowing myself to be held, loved and completely cared for.

I remember each phase of this day two years ago; from Simon waking up and feeling like things were a little off, to hearing that first wheeze, to the ER doc telling us that it was not Pneumonia, to those last moments of holding him before handing him off to Dr. Williams so that she could intubate him and hold on to the little bit of life that he was holding so frailly on to.

This day two years ago sucked. It sucked hard.

And for sure there were moments that followed that sucked just as hard if not harder (e.g. like the weekend where we decided against having him listed for a heart transplant and thought that we were going to have to say goodbye or having a departure date in early November, getting within 48 hours of it and then having Simon catch another staph infection, go septic, and almost die).

But here we are, two years later, and I am in love with my son and my wife in ways that I couldn't even have imagined.

I am living a life where I laugh and I cry with a sweeter kind of abandon and even more than I already did...I don't take anything for granted.

There's no time to.

It's exhausting for sure but it sure as hell beats the alternative that Jaime and I were so close to. Like SO close right?

What an unbelievable ride.

And here we are, two years later. There is no mistaking that this time is so far from where we've been.
Jaime and I just returned from our first ever 24 hours away from Simon.

Thanks to our amazing family (blood and otherwise), Jaime and I took off on Saturday morning for a full 24 hours of jaimelaura time. We travelled to Napa, Yountville, Oakville, and St. Helena for a full day of adult recreation.

We got in and out of our car on a whim. We walked around a town or two, drank coffee, held hands, sat for a 2 hour lunch at Brix, and spent a completely restful night in a hotel where there were no syringes, no medications, no midnight wake-ups, and no crazy cute kid talking in his sleep.

There is no way that two years ago I could have imagined getting to the point where I felt safe enough leaving Simon with three different sets of people (Ginormous love-filled shout out to Anne & Eric, Dre & Joan, and Mamaw D & Grandpa Eddie) who covered his medications and tube feedings for a solid 24 hours.

There is no way that two years ago I could have imagined the amazing little boy that Simon has become. He says please and thank you. He greets complete strangers on the street with a wide smile and overly pronounced "Hellloooo". He has a beautiful arc of expressing sad or mad feelings and then let's us know when he is done, by saying "Oh-Tay". He now says "Shabbat Shalom" as well as "Hola" and "Adios" appropriately. He gets dirty. He wipes his nose on his sleeve. He leans his head all the way back when he's swinging.

He shines.
Two years ago today his light almost went out.
Today, I feel like there is no light that shines brighter.

And to you all, thank you so much for being right there. For whatever part of the ride you've joined us for, thank you. Though there have been times I couldn't do anything but cling to myself or Jaime, there has never been a time when we were completely alone. Thank you.


Abby said...

Laura & Jaime -- I've now read every single Simon Lev blog post. Words are inadequate to express both how sorry I am that you have a child with such a severe, terrifying illness... and also, I am completely wowed by the two of you and how much love you put out into the universe -- to your friends, family, even total strangers -- for of course that is the reason it comes back to you in your enormous support network.

And also, may I say (as a friend, but with a pediatric nurse practitioner career "in my pocket"), Simon is clearly thriving. Everything he has achieved has been far more difficult for him that it has been for healthy children. Learning to walk with an enlarged heart -- how hard was that??? Go Simon!

What a stunning boy and a incredible family you have.

All the best, and big hugs, and strength to you in your journey, and hope to see you all at IB's 70th... I am holding you all in the light.

Abby Wolfson
currently Tamarack Farm's nurse, and otherwise a pediatric nurse practitioner in Brooklyn (as well as an old camp friend of Laura)

Sol said...

You three are an example and an inspiration. Rock on, Mr. Shimmy!

Anonymous said...

Your journey and strength are awesome. Wishing Simon and you ALL the best.

--a Grand Lake neighbor

pansyliz said...

i am so glad that i was the lucky person to take your call regarding your minutes on your cell phone. You writing and stories have been an inspiration. Congratulations to having enough time to look back with what appears to be "alright this is where we are and we are a proud and loving family!" You are often in my thoughts.

LFS, Pansyliz

The Fitch-Jenett Family said...

LFS PansyLiz!! You are amazing. Bless you for keeping up with us. Your post just warmed my heart immensely.
Thank you Thank you