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...