Saturday, July 19, 2014

Mayor of...Pretty Much Everywhere He Goes

Summer is magic for this kid.  Every summer, particularly the last 3, Simon's development goes into hyperdrive, especially his social development. I think it's something about the no-pressure environment of camp and being around so many typical kids.  Whatever it is, this summer the kid has turned into the freaking mayor of every place he goes.

Tonight was the end-of -session all-camp picnic for the camp he's been at for the last 4 weeks.  We're talking 500 campers, at least 100 staff and probably 400 parents.  It was crazytown.  And Simon?  He was the g.d. mayor of this place.  Everytime we turned around, some kid, usually a girl between the ages of 9 and 14, but also kids his own age, adolescent boys and even parents were chirping "Hey Simon!"  "Give me 5, Simon!"  "Come with me, Simon!".

Then, we found the award his counselor gave him.  Swear to god, the award he got was the"Oops, Sorry!  But we're falling in love with you" award.  See for yourselves:

When we signed him up for this camp, we made a decision to put him in the age group one set younger than his chronological age, so he's mostly with 5 year olds, even though he's 6.  I venture to say this may be the best decision we've made since we decided to have his g-tube (feeding tube) surgically implanted (more about that in a minute, actually!).  For the first time, maybe ever, he's getting to be a leader, has motor skills at or even a little better than some of his buddies, and is the same size as everyone else.  The biggest news is that not only is he charming the masses, but he's caught and captured the attention of a kid his own age(ish).

Maybe day 4 of camp, Laura called me at work with a tone of...well...awe is the best way to describe it.  She explained that as she was dropping Simon off for the camp bus that morning and saying "Bye Simon, have a great day", a parent next to her said, "Wait, Simon?  Are you Simon's Mom?  My son has not stopped talking about his new friend Simon since day one.  Can we please set up a playdate?".  When Laura picked her jaw off the ground, she of course said YES!  We haven't set a date yet, but apparently Simon and this little guy are super tight at camp.  It also turns out that his new friend had a cardiac issue and spent a few weeks in Children's Hospital Oakland when he was a toddler.  Like really does find like.

So...speaking of the hospital...we're going to stay there overnight on Tuesday because Simon is GETTING HIS FEEDING TUBE PERMANENTLY TAKEN OUT.  

I'll just give you a moment to digest that.

 (For new readers, know that Simon has been tube fed since he got ill at 4 months old and has had this piece of plastic sticking out of his abdomen since he was about 10 months old.  Pretty much his entire life. And he's now eating well enough that he doesn't need it anymore.)


And holy PTSD flare up as we are staring down the barrel of a mandatory overnight stay in the hospital.

I forget sometimes how heavily the hospital time sits on me because I have so many sweet memories there from the stable days.  But then last week I went to a meeting at a hospital for work and had to use a restroom on a med-surg floor. Between the smell of the hospital soap and the sound of a beeping monitor, I found myself having to take a deep breath and have a good shiver before I walked into the meeting.  It's been a long, long, long time since we spent a night at Children's Hospital Oakland and it's always been a little scary.

So...4 days from now.


I can't give enough kudos to Laura for getting us to this point.  That woman has literally given blood, sweat and tears to get Simon's eating skills strong enough for us to get rid of the tube.  She's sacrificed three weeks of her sanity to stay locked in a hospital doing battle with him in Orange County.  Done countless loads of laundry after violent, tantruming, table-turning, food-throwing eating sessions.  Worked tirelessly to figure out how to let go of the reins enough to let me try to do meals with him and watched me waste precious opportunities to get calories in him while I fumbled. She really is my hero and so very, very much the reason we are at this cusp.

And Simon.  Good lord, Simon.  That kid....he just...well, he's my hero too.  He's brave and funny and resilient and clever and stubborn as hell and loving and struggling and learning and fighting and curious and so, so fascinating, in the best way.  The way his brain works makes me question so many things I never would have stopped to think about and appreciate so many things I take for granted. He's really just about the most interesting child I could have ever hoped to grace my path.  Lucky for both of us, I take after my paternal grandmother and adore interesting people who make me really think. :-) And people who give good hugs. That kid gives the best hugs in town. Really.

And now, the requisite photo essay:
Mr. Hunky with his summer tan. His redheaded Mama is not jealous of that tan AT ALL.

Playing outfield for Team Coach Art!

Batter and his Pop Pop

Doesn't' everyone go to camp dressed like a Viking?

Darth Vader face off

El Macho (Despicable Me 2) kicks Captain America's butt

Water fight with cousin Max!

"Hee hee hee!  I got 'em!"

2 comments: said...

Please don't ever stop writing this blog. I have fallen in love with your son, too. Feel like I've been part of your journey. I have no idea how I found your blog but I love it.

Leslie Giambrone said...

I agree with Jane 100%! It sounds like it's been a pretty fantastic summer and great news on the tube removal. Sending healing light to Simmons tummy...good job buddy and mommies. Oh I wanted to say I saw Simon a few weeks the pet store, while I was paying for my things. There was a Children’s Hospital donation box with your beautiful boys face asking for support. I of course got misty eyed like he was part of my family and put some money in the container. The light that shines through those beautiful eyes is captivating. Sending you happiness!