Daytripper

This is Cesare's third year at Camp Great Rock.  Ces was never able to go to a sleep-away camp when he was young.  He went to one, or two day camps.  One was a terribly overpriced computer camp.  I gamely sat in a common area with a book each day while he was learning programming and what not.  I think he made it 'till midweek when the computer room door swung open and a frantic counselor burst through carrying Cesare, lifeless, in his arms saying Ces had collapsed at the computer.  I think we made it one more day...Ces was nervous, the counselors were frantically nervous and his co-campers gave him a wide berth.  This was all presurgery and comparative improvement for Ces.  Good times, good times.

Camp Great Rock, while associated with the Children's National Medical Center in DC, is located in West Virginia at the edge of the Shenandoahs.  It's a very long drive for us from New York.  I stay the week not because I want to save myself two round trip drives (although..who wouldn't?) but because Cesare is not able to stay overnight with the other campers.  The first year, I think it was more my preference because it was not uncommon for Ces to have ten seizures a night and I frankly didn't trust that anyone would maintain the same level of vigilance that I do at night.  Seizing much less last year, the folks that run the camp said they would prefer he not stay due to his regular seizure activity.  This year, I was ready to let him stay...at least a couple of nights.  But I was told he could not.

I should preface this by saying that I have complete faith in these amazing professionals who dedicate themselves to medically affected kids all summer, every summer and they have been doing so for decades.  Epilepsy week is only one of several groups Brainy Camps welcome each year.  The three individuals who are the touch stones of the camp practice in the field of epilespy and have been advocates for the millions afflicted.  I trust their judgement.

When I asked why he could not stay overnight this year the director explained that while yes, all children at the camp have epilepsy, Cesare's seizures are too predictable- too regular.  I didn't really comprehend that, but didn't fight it: I know that the young (albeit dedicated) counselors in the cabins are not likely to wake from sleep at Cesare's quite grunts and gasps during a cluster of complex partial seizures. And, upon our arrival yesterday, the director said she'd like to see Ces try to stay one night this year...if the seizures aren't too frequent.

I haven't really focused on the irony: Cesare loves to come to this camp and that's that.  To take the sting out of being marooned in the middle of no cell or wifi land I treated us to a very nice hotel in the nearest city, Winchester.  It is a 30 minute commute to camp each morning and evening for me, but well worth it.

                                       

A side note here.......I had always believed that when I am old(er) and cranky(er) that I would like nothing more than to occupy a small cabin overlooking the water on Vancouver Island.  After a lifetime of working with people and caring for my wonderful children, I would quite simply retire from it all- impossilbly.  Not unlike this nice spot...

                       

After three yearly forays into being one with myself in West Virginia, I have come to my senses.  I simply do not occupy myself well.  I think I am always in motion for a reason.  Hmmm.

Last night I headed out to pick up Ces from the camp location.  The route takes me down many winding roads and I pass by way too many deer carcasses.  My phone jiggled with a text message, it was from Cesare saying he was in the middle of a cluster.  That I recieved a text at all in the twilight zone is incomprehensible, but that Ces was telling ME instead of a counselor...or someone at camp was unnerving.  I barked at SIRI to tell Cesare to tell someone and try to get an Ativan.  He didn't respond.  To say I drove at the speed of light would be silly, but damn close.  One of my shitty summer jobs was to transport cars for Hertz with a lot of other stupid, often reckless, 18 year olds.  I can handle speed, unfortunately.  I cannot handle deer however.  But they clearly sensed a frantic mother in the wind and stayed clear.  A bunny sacrified her life however, I hope the wild kingdom will forgive me.  

When I arrived I passed the directors in their car huslting down to Cesare's cabin and I followed: the two of us kicking up dust like an episode of MacGyver.  I saw one of Ces' counselors, also in his car looking to retrieve assistance.  I nonchalantly/hysterically knocked on the cabin door and when it swung open I saw Ces standing among his friends yukking it up about something or other.  The cluster was over, he was almost fine (he seized many, many more times back at the hotel).  The two women who are the mainstay of the camp were calm and very responsive.  We made a plan to address a day time cluster should it happen again- which is very, very rare.  We talked briefly about what might have set off the seizures.  I made a list: the 100 degree heat and playing all day out in the sun, red dye, nitrates or antibotic hopped up red meat or other additives hidden in the camp food in a way Cesare could not discern, or perhaps stress.  This registered what I took to be quizzical looks on the women's faces. The conversation was revealing to me.  Don't other kids react this way?  Is Cesare an aberration even here among his real, actual peers?   He is, apparently.  Ces told me that he was chatting with a similarly aged young man at camp who has had only one seizure in his life.  Cesare was incredulous.  He tells me when someone has a seizure at camp..and it is not often.  I only hear about a couple, among all of those kids, each season.  

Whether there are very few kids out there very much like Cesare...still seizing if not daily then every other day...or whether those kids simply don't make it to camp I don't know.  But here in the land of greenery,  archery and camp fires, Cesare still has not found his place: not so different but different enough.   He's the kid with seizures who cannot sleep at epilepsy camp.