Saturday, October 25, 2014

We'll share this one.

In no way was I prepared to celebrate my twins' 18th birthday today.  It is so large, so inconceivable. While 18 means so much in our culture, it signifies so much more for us.  The first thought that occurs to me, is "We made it!".  I survived parenting twins, and we all survived pediatric epilepsy.  I could ruminate on all that that means, but I choose to just be thankful today.  Gratitude is itself a gift.  If we can hold on to some semblance of appreciation for...anything- then life, no matter how intense, is lighter and sweeter.

And so as I rejoice in my guys and their big day, I am also celebrating my givingbirthday.  I may celebrate quietly and to myself, but today is my big day.  The most significant day of my life, 18 years ago.  

Griffin came home from college and found us all thrilled to be in his company.  It has been a difficult, scary week.  Cesare's seizures have, after several years of being pesky but predictable, taken off on a whole new path.  His seizures are clustering and won't stop easily.  He's taken a couple of good falls, too.  We went to see his doc at NYU and have decided to accelerate the process to explore his candidacy for the new RNS surgery.  It's time.  

But we won't speak of that this weekend.  It is our big day, the biggest of days.

Nick Urata

Sunday, October 12, 2014

My son the horse.

It's a beautiful fall day where I live.  Sunny and crisp.  Any sane person would be outside biking, gardening, hiking or otherwise cavorting.  So I am inside- cleaning, correcting papers and futzing around.  Always trying to make space where there is none, I ventured into Cesare's "science cabinet".
This was a genius idea of mine maybe, 10 years ago, to gift Ces a vertical plastic cabinet packed with every element a child could ever want in order to complete any one of a hundred different science experiments in the accompanying kids experiments books I bought to go along with it.  Borax, alka seltzer, iodine, alcohol, wax, flour, wax paper, Q tips, measuring cups, cones, food coloring, nail polish remover, plaster of Paris, Epsom salt and copper wire to name but a very few.

This held Cesare's interest for several months.  I've always hoped that he'd be drawn back to it..take a break from electronics of all sorts.. and get back to his roots as a mini scientist.  That hasn't been the case, unfortunately.  I can't bring myself to wheel that cabinet, still full, out of the kitchen and to it's rightful place at the dump.  I poked through it today, as I have done on occasion.  Wondering what ingredients or useful household chemicals could be recycled.  Do you know what I came upon?  Shaving cream.  That stopped me in my tracks.  The day I looped through, I can't tell you how many, stores and hobby shops to fill that cabinet and added shaving cream to my basket I'm quite sure I never imagined that I'd be relocating the can to the sink Cesare now uses to shave.

There is a fabulous metaphor in that, somewhere.  And I love a good metaphor, but I can't see past the stark reality of Ces being all grown up.  The other realization that I'm frozen in place with is that through all these years of trying to conjure up activities, hobbies and interests that might give Cesare joy and purpose...most of those efforts have fallen flat.  Once a rock climbing enthusiast, who owns his own impressive compound bow and for whom we inconveniently store in the basement a very nice Yamaha electric keyboard,  Cesare occupies his days with little outside of video games and reruns of his favorite shows: Buffy the Vampire Slayer and Psyche.

Cesare is game for the occasional outing, but he quickly returns to his routine.  A few weeks ago he joined me in Brooklyn, NY for the latest Improv Everywhere silliness.  Cesare loves silliness and I love having an invitation to play like a kid.   Improv Everywhere has grown into a very popular organization who invites the general public to planned "events" purely to make others smile.  Visit their web page to see some of their "missions" (the currently featured mission on the homepage was our event in Brooklyn).  Griffin and I attended the first (now annual) "Black Tie Beach".   We secret agents met in a predetermined location on Coney Island dressed in formal wear. Then the several hundred of us fanned out on the beach with our beach balls and pales with shovels and had a day at the beach.  We were to appear to others as if we always bath in our gowns and tuxedos.



In Brooklyn, Cesare and I hit "play" on our phones at the same time as a few thousand others and followed the pre-downloaded instructions to follow a number of ridiculous instructions such as forming a can-can line and running from monsters in the center of Fort Greene park.


Cesare had a great time.  When the event was over we made our way into Manhattan and to Chinatown for dim sum.  The huge dining room of this awesome place couples small parties together at large dining tables.  We were seated with a couple that engaged Cesare in conversation for the whole of our meal.   To make our train, we rode the subway packed with Little Italy festival goers.  There was little place to stand: strangers rubbing against strangers.  Cesare took it all in stride.  Here he is clutching his coconut from a street vendor:



Fortunate to have artists on my husband's side of the family, we were invited to an art opening this weekend.  My husband had a piece on exhibit as well as several other artists who are also teachers.  It was a commentary on the evolving limitations placed on educators who wish to teach to the student instead of teaching to the state tests.  Cesare again had a great time.  He got involved with the interactive part of the evening my brother-in-law orchestrated.  He posed happily with his brother and cousins...but didn't really engage in conversation with them.



Sometimes Cesare will decline an invitation to "do something".  He is always happier to be at home than anywhere else.  Frankly, he inherited this from me.  But I've already had a lifetime of travel, of adventures and disasters.  

I guess Cesare just hasn't found himself drawn into the world yet.  He hasn't yet found a niche, a love or a calling.  Until then I will continue to bus him, drive him and other wise lead him to water.  But I can't make him drink.