Musing about.

The things I am musing about this week...

I am planning a short summer vacation, squeezing one in before Griff goes off to college in the fall. I think of it as the last family vacation we'll take, but I hope that's not true.  I am amusing myself by organizing a trip circling around Colorado Springs.  I've scheduled a week in Manitou Springs, just outside of Colorado Springs.  Why?  Well, ostensibly because it is beautiful there. And because I asked Griff where he'd like to go and he said he'd never seen the Rockies.  And because it is, currently, epilepsy Mecca: home of Charlotte's Web.  This amuses me because I know damn well that we can't access this low THC medical marijuana for Cesare without proof of citizenship in Colorado (or California).  I imagine that the ever growing epilepsy community there will greet us at their doorsteps and invite us in for dinner and help me feel not so quite alone. But, instead, I'll peer in at the community- I suppose- like looking through the window of a candy store, and know that for now this will be out of my reach.  Still,  there are lots of things to do there and I hope we will all find the mountains therapeutic.

I am thinking about our visit last week with Cesare's doc at NYU who asked us to seriously consider just one more brain surgery.  They are the forerunners of the new RNS Stimulator. Cesare is all for it, remembering the "fun" of his many surgeries:  all day TV in his room, hot and cold running food, visitors and of course the anesthesia which he remembers very fondly.  We're fortunate that he's not out in the world being a typical 17 year old where I fear he'd be tempted to get high or drink to replicate the sensation he seems to love.

While it is ultimately his decision, I have been experiencing what I can only describe as PTSD (post traumatic stress disorder) at the mere thought of walking through another brain surgery with him. He's having an MRI in a few weeks to begin the eligibility process, and there is no hurry to proceed.  However, when I wince at this idea or at the idea of starting the Fycompa again (yes, again...there is nothing else to start anew) his very smart and compassionate doc challenges me to consider the risks of not doing something.  She's right.  It's choosing the lesser of all the evils.  And they are all evils.

I've also been thinking a lot about Ron Suskind with whom I saw an interview this week on The Daily Show.  Suskind is a Pulitzer prize winning writer.  For many years a national affairs journalist, he's written a novel about personal struggle, books delving into political ideology and terrorism and a book about financial power brokers.  And now, just now, after five critically acclaimed books he has written a book about his twenty five year old son with autism: Life, Animated.  His son's autism is of the brutal variety where your chatty typical toddler disappears before your eyes. The Suskind family is engaged in a daily challenge to stay connected with their adult son who communicates only through Disney movie dialogue.  I cannot fathom how Suskind (and his amazing wife) got out of bed many mornings much less was a thriving socially conscious journalist and writer for all of those years. Despite their sorrow and struggle at home, Suskind was more productive than most of us will ever be.  Well, more productive than I'll ever be.   Makes me think twice about sitting around the house every weekend in my pajamas.

I'm thinking too, about Spring and about my garden.  I can see the lettuce and arugula in the garden from where I sit.  I will plant my new tomato and other veggie seedlings today.  And I'll be mindful that all not all of my plants will be strong:  some will bear fruit, some will wither.  It is the cycle of things.  To believe we have control over the extraordinary evolution of a life is just folly.