Monday, September 8, 2014

Perspective All Over Me

Laura Here;

I've wanted to write for a while.

I've wanted to write about our amazing summer and sweet sweet times over here.

I wanted to tell you that Simon has become an amazing eater with montster bites and a true foodie palate.

 I wanted to tell you how he had such an amazing time meeting and playing with so many new people, including some kids his own age.

I wanted to share with you how opening day went at his new school and how his new teacher thinks Simon is awesome (but we think she's more awesome!).

 I wanted to take pictures of him in his new school outfits and tell you about the time that we were hanging out in the playroom of a bookstore and Simon full on asked this new girl that came if she "wanted to play Dinosaurs" with him and she did and there was a battle between herbivores and carnivores with several rounds and eventual victors.

Then I wanted to share with you about the time that we were at the foodtruck Friday event and Simon got a balloon sword and perfected the twist strike but had to recover from several injuries before the battle was over.

I wanted to tell you how amazing and frustrating it was to have typical 5/6 year old battles with him about cleaning his room up and eating what we were having for dinner versus the Otter Pop (icee) that he would just "kill nature' over if he didn't get it.

I wanted to tell you how much it means to me to run my hand down the length of my son's torso and NOT have to do a detour around a mic-key button protruding from his abdomen. AND, that boy has a little belly. No too much of one but a nice little Fitch pouche there

And then too much happened and it all feels trivial when other parents are posting about the sudden or not so sudden death of their baby or child. Aryanna, DeShaun, and Layla are gone.  I don't know what to do again. Simon has this disease. He lives with it.  I have survivors guilt and then feel it even more when I spend an entire therapy session bitching and crying over how hard it's been figuring out new strategies for him to eat breakfast/get dressed/entertain himself for 5 minutes at home without destroying something.

To be honest, I don't know how to hold it all other than to just remember I can't. I can send out love and comment on Facebook. I can even arrange for a meal to get to a family that's infirmed. I can attend a memorial service when it's local. I can make music mixes and send out cd's. I can arrange my life's work to include supporting families like mine that sometimes don't get the chance to go home for weeks at a time, living in a hospital, wondering if the're leaving with the same family they came in with.

I can buy plane tickets for a January trip to New York with only a twinge of concern about travelling in the middle of cold and flu season. I can be relatively non-chalant during the Automatic Defibulator training for Simon's teachers since right now, he's at no greater risk for sudden cardiac arrest that any other kid. I can forget for moments at a time that Simon has Dilated Cardiomyopthy with Left Ventricular Non-Compaction and still takes two very powerful heart medication 2x a day.

And then I remember. I rememeber on a cellular level because I feel so deeply connected to those parents that are posting. I wish that $$ was of no concern to me and I could fly out to each and every one of those memorial services or spend hours at the bedside of those kids listed and waiting for heart transplants. I wish that I could hold the hands of those strangers that often feel like family to me.

I wish that I were so evolved that I could transfer these feelings to dealing with my own son, who is very much alive and kicking, sometimes literally, when he is feeling his 6 year old self in opposition to my 41 year old obviously much wiser and more mature self.

Like tonight for example. Simon came home from a full day of school, his first since he started (they've had a week and a half of minimum days). This was day 1 of a change in one of his meds (a significant increase), and ABA therapy. It was not surpising to me that by 7pm we were in full meltdown mode complete with intense hitting and kicking, pulling the sheets off his bed, and throwing beloved toys and books. Red-rimmed eyes remind me that it's not just the last 4 bites of Samosa that's thrown him over the edge. It could be any one of the above mentioned issues. Being 6 is hard enough. Being 6 and having a language delay is harder. Being 6 and possibly having side effects from an increase in your heart medication and not being able to understand or communicate about it sucks even harder.

And all Mommy wants to do is finish dinner and get to the snuggling on the couch because all I can think about  are the parents that are finishing their night still swimming in the deep end of the grief ocean over the loss of their little one.  Old habits die hard though. I also wanted it to be a normal night and that means working through some of our old patterns of getting enough calories in....blah blah blah.

Let's just say that one of us does a better job being in the moment and one of us, the one well into her double digits, finally got it when the other one, deep into his tantrum, cries out "but you will still lie down with me right?"

It's that simple. We need to lie down together and hold each other no matter what. At the end of the day, meal eaten, homework completed, dessert earned, plates thrown on the floor, sheets ripped off, OR NOT, we must lie down, touch each others faces, listen to some soothing music and wait for the deep breaths to begin.

Simon got to his nice and quickly. I'm still waiting for mine to take hold.

Some pictures to show how we are blessed.

First Day of 1st Grade
 I got this Michael Jackson
 Or, maybe John Travolta
 Either way, 1st grade dude!

Getting ready for Mitzvah Thursdays
 Sherrif Woody reporting for Cupcake duty

At Oakland Pride

If my mom gave me this Marine haircut, 
the least I can do is make it look kinda punk

Mitzvah Thursday II

A little then and now photo for you


GG and G-Pa lovin hin up!

Tuesday, August 26, 2014


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


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


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


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.

(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...