Wednesday, July 30, 2014

These Moments

There are these moments

The one where Simon and I are lying in bed and he's about to fall asleep. He turns over and lays his head on my chest. "Will you pet this cat?"  I begin to pet his head and he says "Mmm it would make this cat so pleased to have you pet his head." (Where does he learn that stuff?)

There was the one where tonight, watching the movie Robots, he begins to laugh so hard at the farting scene that he can barely catch his breath.

The one where last night, when we took off his steri strips from his surgery site and saw what looked like a gaping hole where there should have been a nicely healing sutured up incision and I thought I might not catch a breath from frustration and the feeling of 'if it's not one thing then it's another.'

The one where after the anesthesia wore off in the hospital a week ago Tuesday and Simon was able to walk around the hospital wearing his surgical cap giving out shots and hugs as a 'Hug-ologist.'

The one before that when he emerged from the anesthesia full of rage and all my heart could do was nod "yes, little boy. You have such a right to this rage"

Then the one where he was hysterical with laughter as he and his cousin Charlie battled with water guns against the all powerful water-spitting red-headed whale-shark (otherwise known as Mama/Auntie Jaime).

There was the moment the other morning when he had 3 bites left of breakfast with the promise of iPad time if he can finish in the next 10 minutes and he loses his chance because he keeps the first bite in his mouth for all of those ten minutes without chewing or swallowing and I think I may never ever regain a sense of calm or enjoy my child ever again.

There's the moment when I breathe a huge sigh of relief when I have managed to successfully cut all of his fingernails in one go while he stayed asleep.

Then there's the one immediately after when my back spasms because of the awkward angle that I was in leaning over his bed and wonder when the fuck I'll be able to get him to let me do it while he's awake. That and haircuts. You sweet child with early medical trauma and sensory issues, you.

There was the moment this morning when I couldn't get a hold of any of his doctors to tell me that yes or no it's totally normal for there to be a gaping hole in his abdomen 7 days after a surgery to close up said hole and I just lost my shit sobbing like a kid that just walked a parking lot the length of a football field barefoot over small lego pieces to get to the gates of Disneyland only to be told that there were several more things to do before getting to go in.

Or, the moment when during his annual check up, right before we're getting ready to leave with an everything is great, keep on keepin' on there's the bomb of I'm a little concerned about .... let's run a test that may or may not tell us yet another thing that your kid might have to live with for the rest of his life.

Of course there's also the moment when you learn that another kid at camp is telling his parents that he's so excited that he's made a new friend at camp and his name is Simon. That's a really good one.

There are also those moments that are old but come floating up in your memory every year around this time.

The one where you first heard a wheeze coming from your 3 month & 3 week old baby and thought twice about waiting to take him to the doctor because Mommy and Me swimming in the Berkeley warm pool might actually be good for him if it's just some congestion.

The one where the ER doctor comes in to tell you the result of the chest x-ray to confirm that it's just a case of pneumonia and in a tone you'll never forget says "So, it's not pneumonia (millisecond pause), it's his heart."

There was the moment coming back from our heart transplant consult at Lucille Packard before we could even reach the double doors of the ICU at Children's Oakland where my feet wouldn't go any further and I collapsed.

There was that dreamy moment just a week later when the Carvedilol did it's magic and we had an unrecognizably happy baby to get to know.

And the morning we left the ICU. And the day he surprised all of us and walked his first steps like he'd been walking for months. And the one where he asked for decaf coffee goddammit.

And so many more in between doctors and therapy appointments and birthdays and taking out his G-tube so that for the most part he is an invisible walking miracle.

...except he's not. He is such a bright light. People notice it.

He is my infuriating, complex, surprising, hysterically funny, always changing, beautiful and strange Simon.  I love him fiercely. I'm taking damn good care of him and he's thriving in spite of it.

Jaime is the one that I want to be doing all this shit with and thank god she feels the same cuz lord knows this was not what she signed on for when I first said 'let's do this thing' 12 years ago.

Six years ago August 1st, our family was rocked so hard it should have splintered. It didn't and as hard as some moments have been, they have also been held by so many and knitted my family together in that same way that a broken bone is stronger for it in the place it fractured.

This Fitch-Jenett family, this trio, and all the many spokes that make up the whole, we are thriving in spite of so much. Six cycles around the sun. Six seasons of parenting plus. Six years of feeling blessings and curses in ways that I couldn't even imagine. Six years.

Great thanks to Simon and to Jaime. Great thanks to each one of you that have helped us get here.  And last but certainly not least, great thanks to one hell of a sense of humor. Yours, mine, Simon's, the whatever-you-want-to-call-it-thing-that's-greater-than-the-sum-of-the-parts. That.

Yeah, I think he's ready to take the tube out


The Force is strong with this one


Time with MM


A Knight getting ready for his journey


Snuggles with PopPop after an exhausting round of golf


We're #1


Love Family Farm time with G'Paw


Doctor HuggyPants


That sense of Humor mentioned earlier 
clearly comes from both sides of the family


Maya and Simon, riding the rails



 Reading with MM, booty butt grabbin' with PopPop.


There's so much healing going on over here. It's really good (and hard sometimes) to be us.


2 comments:

Leslie Giambrone said...

Healing it's a magical thing. Keep on healing on! :) Thank you for this blog. Thank you for the good, the bad and the ugly. And thank you for sharing all the wonderful moments in Simons' life with us. Both of you are wonderful writers, making me feel like I live down the street. I send you dreams and wishes for many, many more wonderful magical moments. Hugs.....

Erica Kain said...

Well hooray for Simon and your continued wonderfulness! I really needed a dose of Simon magic this week. (To refresh your memories and to seem less like a stalker, I met you guys at Glennon's reading last year.)

I just had my fifth miscarriage and was feeling super shitty today, so I stopped for gas because what the hell. AND SIMON'S FACE WAS SMILING AT ME FROM THE GAS STATION WINDOW.

OK it was on a poster. Nevertheless, it felt like a nice, personalized thumbs up to me.

So I stopped by your blog to say thanks, I needed that! Go Team Simon! :-)