Tuesday, August 26, 2014

Keshet!

This weekend we went to Camp Keshet, a family camp for Jewish LGBT families that's part of Camp Tawonga.

 It. Was. Amazing.

We were supposed to go last year, but the Yosemite rim fire led to them having to cancel camp (the camp ended up being basecamp for the fire fighters).  The level of destruction all around the camp was stupendous and the camp itself was idyllic and lush.  It was really intense to feel like we were in Eden and surrounded by what is essentially a 200 mile forest graveyard.

Camp.  Camp was...mindblowingly great.  Simon was adored.  We were relaxed.  Friends were reconnected with and new ones made.  Worries about future surgeries were banished.  The food was awesome. The singing raucus.  The Shabbat service in the woods so beautiful I cried and cried. The fact that a whole camp was directed by and staffed by majority straight people was heartbreaking in the best way.  Allyship taken to a totally new level.  It felt totally radical.

Don't even quite have words, so I'll let the photos tell the story.



Simon with Charlie, the first staffer he charmed

A pre-swim snuggle

Campers!

Spent HOURS on this stage orating to whomever would listen

Getting ready to fish in the lake/pond

Learning to cast off

Ticklefest by the pond
Shabbat Services

Reading the Torah
Boy time! 
More boy time

Family time



Walking to the river

Fishin'

Family on the trail

Playing dinos with a favorite counselor

In the boat with his one true love, Lily

A little fancy dancing

Ready for action

All packed up and ready to go with his Huck Finn pack

Birthday chair dance

SOOO thrilled to see Jhos (the rabbi that married us)

Adoring fans

Wiped out with a filthy mug

A little goat petting on the way home

You know who you look like??
This is why we will send Simon to Camp Tawonga.  This. 


Saturday, August 9, 2014

Maspeek!

Sometimes being a parent of a kid with extra stuff and having PTSD feels like a constant cycle of some part of my heart getting ripped open and slowly healing and then getting ripped open again just when it's beginning to finally knit back together. Even minor, non-life threatening deviations from "normal" feel excruciating.

I felt so great after my post following Simon's surgery and that I had healed parts of myself wounded by our experience in the ICU.  That may be true, but goddamn if I don't still have PTSD. The roller coaster has taken another nose-dive, or at least my heart has. After my post, it got to enjoy about 24 hours of joyful loft before yet another pinprick sent it sputtering down to the floor. The experience of being carefree is a luxury that I have never fully appreciated until now.

Three days after after Simon had his g-tube closure surgery, I took him in for his annual checkup in preparation for the new school year.  Our doctor did all her regular poking, prodding and asking questions and then at the very end, checked on something, unrelated to his heart, that we've been watching for years.

I'm going to be intentionally vague about the details because it's something Simon might not want out on the internet when he's 14.

Suffice it to say that at THIS visit, our doctor said it was time to have an ultrasound to see what was really going on. She didn't have much more information to tell us, but I left with the knowledge that my son was likely going to have yet one more thing that would set him apart from his peers. I left crushed and pissed and wanting to shake my fist at the sky.

"MASPEEK!"
(Essentially, "enough is enough" in Hebrew. )

I came home to tell Laura the news and she just stared at me, almost expressionless.  "What the fuck?", was all she said.  "Yeah, exactly", I replied, feeling equally flattened.

We decided not to really say anything to anyone until we had more information. For me, it's mostly because I'm just exhausted from the endless waves of drama over the past 6 years. I have been fighting the urge to spin out into reckless raging at the universe about this one-more-thing until we have more information, knowing that I'll need to conserve that energy to make it through the terror that will accompany one more diagnosis, even if it's not life-threatening.

This past Thursday, Laura did a double whammy ultrasound appointment and g-tube closure post-op check up.

His g-tube site is closing fine.  Great.  It should be. Let's move on.  I'm over this one.

At the other appointment, the ultrasound tech, and ultimately the doctor who was brought in, could not definitively tell us what they saw but are almost sure it's the condition we suspected.  Laura left with the knowledge that Simon may have to have an MRI and would likely need to see yet another specialist. We would need to follow up with our pediatrician to figure out next steps.

That night, our pediatrician called just as we were parking the car to go to a movie for date night. Laura put her on speaker phone. As she spoke, I found myself slowly crumpling into a ball, my face on my hands, slowly shaking my head back and forth. She told us it was likely that he would need another surgery to prevent possible life-threatening complications later in life.  We would wait until "our" surgeon  reviewed the ultrasound to hear about next steps.  If this had been more on the front burner, we probably could have figured this out and done it when he was under for his g-tube closure, but...that ship has sailed.

The speed at which joy was leaking from my heart sped up into an almost audible hiss.

We stumbled around the neighborhood trying to figure out what to eat for dinner and trying to not talk about what just happened.  We had both lost our appetite so we just sat in the theater seats alternately talking about totally mundane things, repeating variations on "Another surgery? You have got to be fucking kidding me! Can we just get a goddamn break?!?"  and and trying to figure out the best time over the next year to have the surgery. There is no major hurry but it needs to happen before adolesence and we'd rather just get it over with.  Not the best date night we've ever had, that's for sure.

It's better now, but for the first 24 hours after talking to our pediatrician, every 20 minutes or so I'd remember the new bullshit and feel an almost physical weight pressing on my shoulders.  If it didn't feel so oppressive and awful, I'd marvel at how accurate the phrase "having the weight of the world on your shoulders" is.

We haven't said much to Simon because we don't really have a lot of details.  I'm kicking myself for saying out loud so many times, "This could be the last time we could ever need to be in the hospital" as we were leaving a few weeks ago.  I'm not particularly supersitious but...damn it.

We've been having a great time in spite of all this mishegas.  We've started something we're calling Mitzvah Wednesdays- trying to do good deeds as a family on Wednesday nights. Simon has been super into baking so this past Wed we went out into our neighborhood and distributed the goods.  It was spectacularly fun.  Simon assigned the superhero alteregos to each of us...












There is always an opportunity to do a good deed and a good deed will always make you feel better. My goal over the next few months is to try to remember this...

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.