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!