Separation Anxiety

As I am writing this post I need to stop every few minutes to comfort Ces who is lying next to me.  He's in day three of completely unexplained batches of seizures: as many as ten back to back more than once in a day.  I've already administered  Ativan to calm his system...but he keeps rolling- 30 to 40 seconds each time.  He freezes, gasps, trembles, sighs, and then says, "over".  Last weekend he seized sitting in the bathroom and tumbled into the vanity lacerating his scalp pretty colorfully.  He is scheduled to have the staples removed this afternoon.

And each one of these suckers, as they always have, start with a fear aura.  What must that be like?  Undefined terror grips Cesare that can't be explained, and can't be quelled with any of the conventions the rest of us use to confront our fears: a light in the dark, or safety in numbers.

Cesare has already topped out each of his anti-epileptic drugs.  There is nothing left to increase, and virtually nothing on the market he hasn't tried.  His safety intervention med is a nasal spray, called Medazolam, which has thus far proved worthless.  So I pile on the Ativan which makes him sleepy and dopey.  (He's just had his eleventh seizure and I've just handed him his second Ativan).

The last time this strange cycle occurred was early November.  After increasing his Fycompa, his old pattern returned: averaging two or three seizures daily, usually around bedtime.  (My apologies, Fycompa, to anything I have said in the past about your potential side effects that may have offended you).

With the confidence that that strange anomaly had passed and with the advent of the new year we spent some of our Winter Holiday moving me out of Cesare's bedroom.  New paint, some new furniture and the plan to order a nifty kind of new pulse-ox that is worn like a wrist watch.

This has been a difficult move for me... a whole different kind of letting go from the tearful goodbye I had just said to Griffin in the fall as he headed for college.  And wouldn't you know, Griffin leaves this afternoon to return to college after a month home.  Two very different kinds of separation.  Two very different kinds of anxiety.  I am preoccupied with both.

Last week, Griffin engineered making good on a challenge he had with his brother: when they turned 18 they would get tattoos.  They agreed on the Celtic symbol for Brother.  They are both quite proud of themselves, and I am quite teary.

Cesare is gearing up for his own loss as his twin packs up to leave today.  We've talked about coping and what forms that can take.  Cesare says he needs to wipe Griffin from his memory to make the transition.   He told me yesterday that he wouldn't be wearing T-shirts for a while.  He wants long sleeves to cover up the symbol that represents what he will soon be without.

Cesare has stopped seizing now, and we'll go on with our day.  Tonight, I'll be in my bed with my ear close to the baby monitor and wishing I had a life line to Griff as well.  Cesare will close a door in his mind that keeps his longing for his brother just a little further than arm's distance away.