“It has been four years since my last confession...”

(Those of us who were raised Catholic may appreciate that HaHa)
I hadn’t planned to add to this blog, but I am making any and all efforts to connect with others who might share my current goal to locate or develop a shared housing model for my 22 year old Cesare.  I am stubbornly not a social media participant, but hope through connections with you, and on the Epilepsy website, I might find other parents or young adults who might be interested in a a similar idea.

Cesare is all grown up now!  In the intervening years since I last posted, Ces did receive the RNS implant and it has significantly improved his seizure frequency and intensity.  The docs at NYU acquiesced because Cesare had his first status epilepticus in 2017 that rocked our world.  They were kindly willing to try anything at that point.  Still bright and conversant, Ces continues to need close monitoring, especially at night, where he has had more than one emergent episode in the last six months.

I’m retiring in a year and a half and Cesare’s future has never been more in focus for me.  Cesare cannot live alone; in addition to break through seizures his processing and judgement continue to be impaired by a bucket of meds each day- and of course, whatever damage epilepsy has done to him.
Homes for the developmentally disabled may not offer him a similar peer group, but most importantly there is no mechanism for 24 hour medical monitoring.  Believe me, I’ve checked.  Even in Assisted Living, which is really not for the young, two hour wellness checks seem to be the norm.

My dream housing for Ces would be a home with four or so bedrooms, communal living and dining and a central monitoring hub staffed at night with a rotating roster of parents, family members or hirees who would have access to each resident through video observation or pulse-oximeter monitoring- whatever is needed.  During the day, our kids would hopefully have supported employment, or activities of their own choosing.  Perhaps a support family member, or other would be available each day to assist if necessary.  Perhaps there is a fifth bedroom and a support person loves there permanently, or takes a week per month.

My dream, dream housing for Ces would accommodate MY dream housing and sit within spittin’ distance of a beach, have easy access to public transportation and urban activities and services unknown to us in rural New York- and NO SNOW or ice to decrease my risk of falling and stuff now that I’m, officially, “aging”.  San Diego?

I’ve read many anxious posts from parents and young adults pondering this same dilemma.  I hope there are enough of us out there to create a living space that will endure for our loved ones.

Reckoning

I don't know if there is a way to write about one's pain without seeming to invite sympathy.  I've been writing this blog for a year and in that time I've shared the experience of jumping hurdles and I've written about stumbling.   Many of you have generously written back.  When I am sorrowful, however,  I have a difficult time writing.  I don't want to be a victim, or sound like a victim.  I don't want sympathy.  I don't want to be that person.  It is one reason I write here thinly anonymously: I want to purge without being identifiable.  As I read back through the last year of my blog entries I grow weary listening to this mother who writes of nothing but epilepsy and its choke hold.

I'm a memoir junkie.  I've read dozens and dozens of stories of struggle.  Jeanette Walls, Augusten Burroughs, Mary Karr, Tobias Wolf, Charles Blow, Ishamael Baeh.  In Left to Tell, Immaculee Ilibagiza writes of being hidden for ninety one days in a bathroom with seven other women to survive the Hutu's machetes in Rwanda.  Martin Pistorius, in Ghost Boy, describes being locked in his body but fully conscious, dismissed by doctors as terminal and unreachable.  Amanda Lindhout endured 460 days held captive in Somalia.  I have no patience for the melodramatic writer.  A clean dispassionate yet earnest account is what keeps me glued to the pages.  Not all of the authors have "triumphed": some are slightly broken living slightly off-kilter lives.

I am not those writers.  I haven't lived a life of abuse.  I haven't been buried in my brain or underground or hid from terrorists.  I feel as though after a year of writing about epilepsy, I should be moving on.  Coping, surviving or whatever it is that people do when they resist sliding into a hole.  More than driving a truck through our lives, these pages seem to reveal lives seated firmly in the truck.  We occupy all of the available spaces but for the driver's seat where epilepsy is obtrusively maneuvering our course.  I feel like epilepsy owns me, or at least a controlling share of me.

I haven't written in a few months.  I've been in a dark place.  Cesare hit another rough patch.  I hit his seizures with everything we had.  I drained our emergency supply of midazolam and slept with one hand on Cesare's chest.  He ended up back in the hospital.  They added a fourth anti-epileptic drug and a VNS.  And though he is now more stable, I was drained.  I felt like a victim and knew I'd sound like one if I wrote.

I've not completely shaken this feeling.  I too often feel sorry for myself though I know I shouldn't or certainly shouldn't admit to it.  Of course the irony is that I don't have epilepsy.  I am healthy and privileged in many ways.   I am, however,  entangled in caregiver-itis and parent-itis.  It's too blurry where I sit right now: where Cesare begins and I end.

Thank you, Beth and Paola, for reaching out recently and for being supportive and kind listeners.  I hope to keep wrtiting but I want to write of more than epilepsy.  I want to drain its power and find a way to distance myself from this persona.  Perhaps I need a new blog for that.

Postictal

The postictal phase of a seizure is the period of recovery after the electrical event has ended.  I've never had a seizure, but I feel like I'm in the postictal phase of one now.

Cesare's case went before the surgical board at NYU.  They considered his candidacy for the RNS implant.  They said no.  The build up, let's call it an aura, lasted about five months and included a smorgasbord of tests: VEEG, MEG, neurophychological, MRI.  The event itself was simply a brief email.  For a moment, I lost my breath and couldn't hear anything around me.

The after effects of a seizure can include "both psychiatric and cognitive symptoms".  I have both.  I feel angry and I think I could wail on someone.  This isn't a rational anger.  The surgical team did not "set up" my son, nor did they come by this decision casually.  But postictal behavior isn't rational.  Or is it?

I just want treatment: every last established or experimental treatment that exists.  Anywhere.  That's all any of us want.  The inequity of the CBD oil phenomenon, for example, is cruel.  Those of us outside the small windows of places like Colorado Springs are like empty pocketed children who may only put our noses to the glass and wish we were allowed in to the sweet shoppe.  Today I read three articles about parents whose unimaginable loss could conceivably have been prevented with access to CBD oil for their children with epilepsy.

I understand controlled studies.  I understand risk analysis.  But I'm a parent and you probably are too.  That supercedes patience and tolerence for regulated health care.  Shirley...

Perhaps a different but no less exacting role is the epilepsy doc or surgeon who has to say "no".  Hundreds of patients and managed medicine that demands docs squeeze caring into just minutes for each appointment.  An inbox that's never empty.  Failed treatments.  Patients who succomb.  Two of Cesare's docs over the years left their jobs because it was just too much: one I still miss, the other had no heart.  But those that see it through are quite simply remarkable.  The doc who perfomed numerous surgeries on Cesare, and is responsible for eliminating Ces' most severe seizures, still rides his white horse into the operating room at NYU after 25 years in practice..even though he declined to mount-up this time.

I'm sure with time I'll shake off the impulse to smash something or to picket the hospital and I'll allow rational thought to reign.

What comes after the postictal phase?  Life.

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.

Thanksgiving, again

Not five days after my last post about my dad, he had a stroke.  I bulleted down to Florida and was in the Neurology ICU before that day's end.  Shortly after the stroke, before I boarded my flight,  my sister put the phone to my dad's ear.  He told me he loved me and cried.

Luck, or divine Intervention or both has my dad back to normal and at home in his bed, and I in mine, tonight just three days after he said goodbye to me.  My sister, a nurse, just happened to be standing near my dad when she saw that he was acting oddly...she called 911 within the first minute...the ambulance arrived and transported him to the hospital within the next 15 minutes.  The stroke intervention, TPA, must be administered within 35 minutes of the event.  He got it within that window.  TPA only works on 50% of clots and it worked on his.  

My dad is extraordinarily lucky and we are immeasurably grateful.  We love you Popi.

                                     

Thanks to Popi

My Dad flew up from Florida to join us for Thanksgiving.  I am grateful that my dad was here with us.  He is unflappably positive and the role model for all of us about how to love.  My husband is fond of saying that when he grows up he wants to be just like Popi.

Popi and Cesare have a special bond.  Popi and Cesare are exceedingly silly, for one.  This is one of my favorite shots that capture my dad the muse/photographer and Cesare the protégé.:

Ces and Popi had some nice moments together last week.  I worry that each will be our last.  

Growing Pains

Such slippery territory is this young adult phase in my son's life.   Newly 18 and a six month post graduate from high school,  my son needs to learn to shape his own life.  Thus far the shape he has chosen is sitting cross legged in front of the XBOX.  Cesare does work three afternoons a week interning in a local manufacturing plant.  I am proud of him for sticking with this, even on days he doesn't especially want to go.   His paychecks acrue in the checking account I helped him open a few weeks ago.  He doesn't spend his savings: he wants for nothing...except to play his video games.

And so I, as I find many parents do, ask myself how much is too much?  If left to his own choices Cesare will play 10 hours of video games without so much as a pause.  I think any reasonable person would agree that this is excessive.  Why?  Because, as experts in the UK, Australia, the US and many other countries will enthusiastically tell us excessive gaming is bad for children.  It interferes with their social lives, and their school work.  It can lead to health problems..obesity and, in surprisingly not rare cases, blood clots resulting in death!

But for my son, as for so many of the young men I work with at my Alternative High School, this is their opiate.  And this is their platform for social connections.  This is the arena in which they excel.  This is the one arena that is manageable and utterly under their control.  I've read articles written by mothers of sons with Aspergers who feel that the XBOX (and XBOX Live) has given their child social connections that are free of judgement and in which their sons can feel competent.

The amount of time that my son spends playing games on his XBOX is worrying me.  It isn't the shear uninterrupted hours that is the most concerning, it is that there seems to be so little else in his life that draws his interest. It doesn't take the therapist in me to suspect depression, any parent can see when their child is withdrawing from life.  My concerns about how Cesare spends his time is rolled up in equally wavy territory concerning his newly emerging status as an adult.  Just weeks into this eighteen year old variety of adulthood, I have curbed, considerably, the number of edicts I hand out.  I make "suggestions" and I express "concerns".  Just a mere six months ago my 17 year old twins lived by rules that included small doses of XBOX in order to make room for homework, chores and life.  That's not so easy now.  And it shouldn't be.  Disability or not, Cesare must begin to make decisions for himself.  

And so I've been tip toeing around him a bit this week looking for an opportunity to bring him into a meaningful conversation about how he spends his time and his life in general. No small undertaking.  

I decided that this conversation could wait no more.  He had a good day at his part time job, he was freshly showered (under duress) and seemed amenable to an interruption in his game play.  

My brilliant and sensitive son patiently explained to me that he feels the need to find ways to deal  with his life.  "It's my coping mechanism, Mom."  Coping with epilepsy, I asked?  "No" he says emphatically, "I don't have to cope with something that has always been there and will always be there.  I've never known anything else."  It is his brother's absence that causes him such grief, he said.  Griffin had just returned to college the day before and won't be home for another three weeks for the Winter Break.   "It's like watching a conveyor belt going by in front of me.  And it's always empty.  But then suddenly someone puts a big pile of candy on the belt, that I'm not allowed to touch." (Referring to his anticipated return of Griff)  It just keeps sliding by in front of me, and since I can't touch it I have to distract myself...I can't think about it."  Ces is teary now, talking about his candy-brother.

Cesare rarely talks about his feelings and I foolishly had no idea he missed his twin so much.  But, of course I should have.  But I read more into what he's telling me.  I read that he is also mourning the emptiness of his "conveyor belt".  How vividly dark that seems to me.  The imagery also reminds me of life literally passing him by.

I've written in the past about offering whatever opportunities for fun and social engagement I can think of in this semi-rural town in which we live.  Cesare has declined each offer.

I don't think this state of mind, or state of life,  is endemic to only those with epilepsy.  I know that many young people don't see the world before them as laid on a silver platter.  I think too many see a conveyor belt squeaking by them as empty as Cesare's.  What these images have in common, though, is a world view where life and all of its opportunities come to you.  Perhaps these views also have a parent behind the curtain who is guilty of cranking the conveyor belt out before their differently-abled child filled with arranged playdates, arts and crafts offerings, hot and cold running meals, and activities for sunny Sundays.

My wish for Ces is to see opportunities as waiting for him to come and get them.  He'll have to venture out into territory that isn't comfortable or familiar to him.  I think it's called growing up.  [We] parents have a shift coming too.  To support but not enable.  To point them in the right direction, but then get out of the way.  Wow.  Is that easier said than done.  

Flashes From the Past

I'm writing from day five at NYU where Cesare is undergoing his kazillionth Video EEG.  He's graduated to the adult floor, having turned 18 last week.  The folks are friendly and knowledgable.  Staff from the pediatric world a few floors below have popped in to say hello.  For us, these folks are more like family than I care to accept.  We've spent whole months at a time here in years past.  But Cesare has been so predictably stable since his last surgery in 2008 that we've had no need to step back into the world of sleepless nights, and the frightening sound of an entire team of running feet racing to a fellow patient's room where seizures may be more life threatening than Cesare's have ever been.  There but for the grace of God.....

                                   

Cesare seems to have lost his stability.  That's why we're here.  That and this is the next step toward consideration of the RNS implant. We've not captured the newer, more intense seizures during this visit.  What the docs have captured has not convinced them he is a shoe-in for the surgery.  He's not out...but he's not in.  Ces and I discussed all the possible permutations of more data collection in this pursuit.  It would likely include opening him up again to get more clinically accurate EEG data.  I told Cesare I didn't think that was a risk worth taking, again.  But now he's 18.  It is his decision.  But, I'm getting ahead of myself.  We have another test to do before the surgical review team will even consider him.  

Tom and I have found ways to make these long stays bearable.  Most of those "ways" involve food.  Italian deli; Thai delivery (to the foot of the bed!), and now a Fairway market at the end of the next block.  If you are unfamiliar with Fairway and the like, it is an orgy of smells and tastes including both an olive and an olive oil bar, a cheese department and a bakery that will lay you out flat.  

To work off some of the idle, culinary, weight gaining hours yesterday I took the stairs down from this, the twelfth, floor.  Yes, I understand that taking stairs DOWN twelve flights is not as advantageous as taking them up, but we won't quibble.  Walking down I was reminded of the photos I saw during Hurricane Sandy two years ago.  Most patients were evacuated before the storm hit, but very critical patients remained.  When the first floor flooded and the generators blew, the remaining few hundred were carried, or "sledded", down these stairs to waiting ambulances who carried them off to neighboring hospitals.  

I think all nurses are heroes and saints but the crew here is outstanding.  And on that night marched up and down countless flights of stairs in the dark just doing what they do.  

NYU is rebuilding.  Signs of improvement are everywhere including new elevators that now get you to the highest floors on the SAME DAY.  And plans are in the works for a new pediatric hospital, though they've been talking about that since we first started coming here ten years ago.  But, the East River, just steps away,  isn't going anywhere anytime soon.  What are they thinking?  

I noticed something while Cesare and I have been roomies here this week.  I'm far more patient with him.  I don't bark and I definately don't bite.  I was thinking about what makes the difference.  When I'm home I am driven to "get things done".  I am laser focused on completing tasks and crossing them off my list.  From this distance I can see how meaningless that is.  But at home, it seems that's the best I can do.  Cesare can't understand that kind of shortsightedness.  Because his is shorter: just what's here and just right now.  There is no list of things to tick off.  There is no need for him to feel he has accomplished anything.  

I head home today.  Tom takes my place and likely will bring Cesare home tomorrow once his regular med regime is restored and he's back to regular functioning, whatever that is.  

I'm sure I'm not alone in this, but it is the not knowing that sets me on edge.  I worry that the predictable seizure life we've lived is being tossed into a blender.  I worry that a new implant won't be an option after all.  I worry that Cesare's life will be short and unhappy.  Me and every other aging parent on this floor.  We pass each other in the halls.  Tense, tired and silent.  

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.

I Was Waiting for You

Nick Urata

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.

Robbed

Many years ago, a film was made from the short story "Flowers for Algernon".  The film,  "Charly", told the story of an intellectually disabled  young man who blithely lived his life being helpful, kind and unaware.

Charly is chosen as a candidate for a surgical procedure that could bring him superior intelligence: and it does.  And with that intelligence comes self awareness: he perceives the world around him and his place in it.

The new and evolved Charly understands from whence he came. As the plot of the story progresses, he becomes painfully aware of his fate:  Charly's superior intelligence is a fleeting gift.
In the final scene, Charly bursts from a university auditorium where he was invited to lecture academicians about his growing brilliance, but instead learns the truth of his certain demise.  Charly's deterioration is swift as he approaches the playground his former self enjoyed.  Dressed in the three piece suit of a learned man he hops aboard a see-saw and joins the children who are once again his peers.  The cycle is complete. 

I too often have flashes of the excruciating visuals in which Charly sheds the walk and the manner of an abled and respected man and returns to the world his less abled self inhabited.   In this tale, the viewer and the characters have the knowledge of the former Charly, and so we know where he is headed. That makes his transformation all the more painful...as if watching a train bearing down, knowing full well the outcome and being unable to move from the tracks.

When my son first started seizing back in the days when we thought he had an emerging anxiety disorder, he had a variety of evaluations (none of which were an EEG).  As I have written previously, his IQ testing was exceptional.  At age 6 he was intuitive, curious and sharp as a tack.

As Cesare grew, and as epilepsy began the slow sapping of his abilities, he was moved into special education classes.  There he was paired with students with whom he would remain grouped until his eventual graduation from high school.  His peers had autism, learning disabilities and emotional disturbances.  These students, as have the hundreds of students I have worked with over the years as a school social worker, generally improved.  Through varying degrees of intervention,  many students with Aspergers learn better social skills, students with learning deficits grow more competent.  Even students with intellectual disabilities learn and become more able.  But epilepsy is too often a diagnosis of  slow decline: Kids who keep seizing experience new brain trauma constantly.
Epilepsy is cruel like that.  After multiple surgeries, countless medications and thousands of seizures, at 18 Cesare is not who he used to be.  He is far more competent and able than Charly, but he was nonetheless robbed.  Like a thief that broke into our lives in slow motion, pilfering treasures like the proficiency to learn advanced skills and to make friends, short term memory or the ability to swiftly process what someone is saying to you.

I think that Cesare does not remember the child he used to be.  He does, however,  have a twin that while not identical is no less a mirror.  The good fortune of the more limited Charly is that he lacks the self awareness to know what he is not or to fully realize that which he cannot do.   Cesare sees his life in parallel to his brother's.  He has always been acutely aware of the opportunities and the privileges that he does not enjoy.  I think if one must lose such gifts it is far better to do so unaware.

For Griffin, the experience of being the twin who is able is almost as difficult.  For he too has a mirror.  He has watched his brother's former, sharper, more alert self transform into the young man who cannot go away to college and who spends way, way too much time with his parents.  Nevertheless, Griffin must still turn toward the door and move forward..out and away as 18 year olds must do.

There is no denying that in the film I have been describing one could argue that the Charly that swings his legs from the see-saw is a happier fellow.  His life is uncomplicated, simple.  But the sorrow in the eyes of those who love him, those who know what he could have been and what he could have had is what levels me.  I identify with those who must impotently watch their loved one tumble into a slow free fall.

An Everyday

                                          

A rainy day.

A peaceful day.

Correcting papers for course taught on "Rape and Sexual Assault".

Empathic, sensitive young men and women motivated to join ranks to end violence against women.

A Rainy day.

An optimistic day.

"Grant Me the Serenity...

...to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."  Truer words never spoken.

I've been immersed in these challenges this week.

I have had the considerable good fortune at my school social work job to have landed in a sizable, windowed office each year...despite moves between different buildings.  I haven't asked, the dice just rolled that way.  I don't typically do well with dark and dank so this has been a great gift for 23 years. This year, due to shifts throughout my building, several of us on the clinical staff were moved into closets, really.

This, of course, not quite accurate.  I'm not that young.

It was an inevitable change that I could see coming down the pike.  With the full weight of "wisdom to the know the difference" at my side, I made lemonade out of lemons and spent a day painting the walls a screaming yellow and added various Pier One Import types of touches.  While a bit dark, I'm truly happy with my digs.

Such wisdom to know what I can change and what I cannot was apparently hiding under the sofa later in the week when Cesare announced that he wanted to quit school (read: the one, single class he is taking at the community college).  He said he couldn't keep up with the content the professor was presenting.  This is a profound moment, I thought to myself.  I can choose to get out of the way and let my young adult son choose his own path, set his course and live his autonomy.  Or, I could wrap him up in my expectations, tightly...so he can't breath.  Wisdom sliding farther under the sofa into the land of dust bunnies, I of course chose the latter.  "But what will become of you?  What do you mean the class is too hard?  Are you trying your best??  Have you met with the professor? What are you going to do with your life?  You're too smart to fold folders at the factory for the rest of your life."

My son is wise and sensitive but not experienced enough to know that the panic in my voice and the fear in my eyes were all of my own making.  I think I scared him and, to his credit, made him angry.  We tabled the discussion until the next day.  I coaxed wisdom out from where it was lallygagging-about with some warm cookies and insisted it provide a little perspective.  I thought about Cesare's IQ testing and what I know well to be his strengths and deficits.  The WISC IV does not measure intelligence... a common misnomer.  It measures performance, or how one's abilities are expressed.  Throughout the course of Cesare's epilepsy, from age 6 to now almost 18, his measured IQ has dropped some 30 points.  His verbal comprehension, his working memory (short term memory) and his perceptual (non verbal) reasoning fall in the average to low average range.  What has plummeted is his processing speed.  Purdue University explains this nicely:

"As an analogy, one can think of the thinking brain like the front entrance to a Victorian style home. There is a porch, front door, a foyer and, of course, the rest of the house. Guests (information) knock at the door and "stand on the porch"(i.e., teacher presents concepts). The host (i.e., the brain) lets the "guest" come into the foyer (i.e., brain perceives the information and registers that it is there). The host helps the guests take off coat and boots (i.e., the brain organizes and clarifies the information for storage), and brings them into the house (i.e. encodes the information into longer term memory). If the host takes too long to perform "host tasks" and get the guests into the living room, some guests may become impatient and leave (i.e., some information is not encoded)." 

Asking Cesare to sift through information and produce a response is laborious for him (i.e, "What do you want for lunch?") But, spontaneous wit?  When younger he was sitting on dad's lap outside watching a spider approach a fly in it's web.  "Look dad, dinner and a show".

Though I know this about Cesare I easily, shamefully, forget.   So, when we sat down to figure this out the next day, I pulled out his WISC scores and explained them to him.  I explained that his very low processing speed means that when his Biology professor is lecturing in front of the room it might seem like trying to catch blowing leaves.  We both got teary.  So much lost in my wonderful son, so much is gone.  He called the college the next morning and dropped the class.  And it's alright with me.  We'll take it one day at a time.  

I faced one more challenge of wisdom and patience before the week's end.  I have a small private psychotherapy practice.  A year ago I relocated to more comfortable office space in a lovely old Victorian house, owned and operated as a community mental health practice for more than twenty five years by a brilliant family therapist.  I confess I do not know Mae well.   I do know her sterling reputation and I know she is dying.  She doesn't come into the building often anymore.  In the year I have been renting there, I've spoken to her only a handful of times.  My colleague, who occupies full time hours in the offices, sees Mae regularly.  Mae has yelled at,  challenged and humiliated my colleague in front of clients making demands about light bulbs, moved furniture and mismatched decor.  My colleague, also a kind and gifted soul, warned me last night when I arrived for clients that Mae was in the building and on a tear.

Beautful Mae, a diminishing 70 pounds or so, launched a litany of complaints in my direction chiefly about my Ikea chair.  It is ugly and offends the other furniture in the room.  To drive the point home, Mae insisted my chair was "spitting" at the loveseat.

As if, literally, rearranging the deckchairs on the Titanic, after a brief recoil I could see this for what it was.  Mae is losing control of her life, it is only the little things now that she can change.  It took me a moment, but I could see that I was the one that needed to have the wisdom to know the difference.

Having control is a seductive notion.  It offers the illusion of safety.  We think if we hold tight enough and manipulate deftly enough everything will be OK.  Sometimes I think we're all just rearranging the deckchairs on the Titanic.  And rearrange we shall.   And a coat of yellow paint can make all the difference in the world.

What Lies Beneath

The school year has begun for Cesare.  Medicaid, bless their souls, continues to fund one to one nursing for Cesare.  I advertised on Craigslist and very quickly found not one but two wonderful nurses.  I explained to both that their role would be to medically supervise Ces at home and when accompanying him to college to help him organize himself and stay focused.  Cesare has enrolled in just one class: Biology.  He is finishing his first week of school today.  Megan accompanies him to school and reports that in class he is engaged, with his hand in the air.  It takes a  team of two conducting a small summit each morning, however, to help him to organize his belongings before heading out the door.


It stops me in my tracks, at times, to consider the possibility that underneath the pervasive effects of Cesare's many drugs, could conceivably be an alert and highly functioning individual waiting patiently to get out.
If you are not yet acquainted, allow me to introduce you to Cesare's battalion of drugs:

• Onfi (clobazam): "Onfi causes drowsiness and sedation. Onfi may slow thinking and impair motor skills."

• Felbatol (felbamate): "Felbamate should be used with extreme caution, because it carries a significant risk of liver and bone marrow failure, which can be fatal."

• Fycompa (perampanel): "Side effects include dizziness, sleepiness, fatigue, irritability, nausea, weight gain, and problems maintaining balance. Serious psychiatric and behavioral reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported. Patients should be monitored for such reactions, as well as changes in mood, behaviors."

If you are the parent of a child with epilepsy, or any other drug responsive disorder or disease you will understand when I say these horrible drugs are our friends.  They have, after multiple brain surgeries and alternative therapies, given him a semblance of a life.  How he functions at all under the weight of those side effects is mind boggling.  

As the fall marches on, we will delve deeper into the possibility of the RNS implant.  If he is a candidate he wants to proceed.  We've stepped many times before into the land of 'could this be the one?'.  I'm not ready to go there quite yet.  But the specter of full time college, a career, independence...wow.  That young man is in there, I just know it.  However, we'll happily take him any way we can get him.  

The Dive

It has been almost 48 hours since my son Griffin walked out the front door of our home and through the door of his new home, albeit a small one...about 12' x 12' for two college freshman.  I fully anticipated the grief I am feeling.  That doesn't make it easier.  I object to the dismissive notion of an "empty nest" which reduces me to a caretaker who has lost my job.  Instead, I am grieving for the young man I have come to know in these last few years.  I am grieving his friendship and the way he fills a room.  I am grieving the way he balances a home that is too often filled with illness and urgency or too much quiet.

(Griff, Cesare)

I've been thinking back to when my twins were about five years old and they learned to swim at our town pool.  We spent most of our summer days there, until it became clear that Cesare's occasional attacks of fear and anxiety were not that at all: he was developing epilepsy. The freedom to swim about and search for colorful toys on the bottom of the pool were no longer  options for him.   Summers filled me with dread knowing that Cesare would demand the same freedom his brother had and that I would have to curb that freedom.  I met with the pool staff, outfitted Ces in neon swim trunks and had him wear a distinctive rainbow bracelet so that all of the young lifeguards could spot him and help me keep an eye on him.  But his freedom was, and forever would be, curbed.

Griffin and Cesare loved the diving board.  I did too.  I'm not a great swimmer, but I can swan dive!  What a feeling that is...arms stretched out to embrace the sky, back arched and head held high before setting for the plunge: arms come together, head down and laser focus on the entry.  I've spent all of Griffin's life trying to prepare him for the dive.  Embrace the world, hold your head high...reach.   I don't know that I've been the best coach.  I've been distracted and infinitely fallible.

Perhaps it was foolish, but I could not deny Cesare the same opportunity to learn to dive...or simply to run freely to the end of the board and jump into the cold, blue void.  I would cajole the lifeguards into allowing me to tread in the dive area to await his plunge.  I'd hold my breath and zero in on Cesare's face, looking for any sign of a seizure creeping up.  He would shriek with delight and hit the water still smiling.  I'm still in the deep end with Cesare.  Watching, waiting, protecting.  I hope for the day that his entry into the world doesn't have me treading a few feet away.  

48 hours ago, Griffin's toes left the board and he's in the arc.  It's too late for coaching now.  I need to give him room, keep breathing and witness the entry.  He's allowed a flop, I've had so many.  He need only get in line again and try to perfect his approach.  It is his challenge now.  

Stabs in the Dark

For as long as we have been a family, we have either worked in or gone to school.  Summer is our  time to regroup, travel and laze around before the fall comes.  The fall is our January 1, the start of the new year.  It is a comfortable routine: new spiral notebooks,  new teachers for the kids and new students and sometimes new administrators for Tom and I.  My friend describes the back to school procession and the ensuing hubbub as being shot out of a cannon and landing at the end of June.  And that is how it has been for us.  Vetting the school scene for Cesare: assertively but not too assertively spelling out Cesare's IEP for his new teachers and therapists, reminding bus drivers he seizes if the bus is too hot on those waning days of summer and making sure that the school nurse has every conceivable form signed and delivered.    For Griffin, I have been the gnat in his ear reminding him to plan ahead..record homework somewhere and moderate his game time at home to squeeze in a little studying time.  It is like being violently launched into space, but not the unknown.

This fall, however,  is all uncharted territory.  Now high school graduates, my boys are stepping out.  Griffin leaves for college in eleven days and counting.  Is he ready? Is any freshman ready?  I cannot be his organizer and time keeper anymore.  He'll land on his feet, but I won't be there to see it.

Cesare lives utterly in the now, lucky fellow.  He is not a planner like his mom.  But transition to the next phase of his life requires some planning. Pulling teeth, I tell you.  I thought we had a plan for Ces to take a couple of courses at the Community College and work in the grant-funded-job coach-assisted factory job he was ushered into this summer for a couple of days a week.  Cesare seemed to be ok with that.  I suggested he consider a two year course to become certified as a  Veterinary Technician.  That sounded just fine a couple of months ago, but as we're getting closer Ces has been asking, "why college?".   Why indeed.  Why anything?  I feel as though I'm swimming in a soup..a chowder really...dodging chunky obstacles in my way.  After all of the sometimes questionable guidance we received during Cesare's entire compulsory education, suddenly it is very, very quiet.  No CSE meetings.  No clear direction or assistance.

I tell Cesare that factory work, while diverting and producing a small paycheck seems kind of cool it will feel decidedly uncool and quite boring after a number of months.  I tell him that school provides not just stimulation for his brain, but provides a chance at social connections and recreation.  He looks at me blankly.  He's very happy sitting home and playing his XBOX, thank you.  But, I tell him,  there is more to life.  These existential conversations have come up before, and have largely fell flat I believe.  I am hoping that there will come a day that through the fog of meds and the emotional burden of "having a disability" to say nothing of the stress of knowing your disorder can creep up and utterly debilitate you without warning, Cesare will consider the future.  I hope that he will have the capacity to ask the bigger questions about his life:  what does he want? and, what does he want to leave behind?  Until then, I fill the uncomfortable role of trying to give him some direction and motivation.  I wish I knew in what direction to point him.

Cannabis U

Since Cesare was diagnosed with epilepsy at age 6 we have been disinclined to penny pinch or even save for a rainy day.  Thank God we have excellent medical coverage, and so instead of saving we try to travel as a family.  Truth be told, it is the rare occasion when my boys will take their various screens away from their eyes and really look at what is around them.  And, coincidentally that often is the rest of the family!

Since Griffin is leaving for college in the fall I asked him to pick the summer vacation this year...what would he like to see?  He said he'd never seen the Rockies.  And that's how we ended up in Colorado this week.  I don't know if part of Griff's curiosity had to do with the legalization of marijuana here, or if it was just about the incredible scenery: (my cup of tea this morning)

                                       

But I was all for it because I have so much I want to learn about cannabis and how its various products might help Cesare.  New York has just legalized medical marijuana.  I contacted his doc at NYU and asked to get rolling on that.  She responded by email, very briefly, that they were not up and running yet.  I don't even know what that means exactly.  So I am happy to be in a state with lots more experience in this area.  I love Orrin Devinsky at NYU and I can't pick up a journal or meander about the web without reading a cautionary article from him about the relative unknowns of using cannabis to treat epilepsy.  When hoards of families moved out here to Colorado Springs to access Charlotte's Web for their epileptic children, Dr. Devinsky was featured prominently on the front page of the NY Times imploring families to slow down.

Nevertheless there is much to learn about what is out there for Cesare, and unfortunately, not much guidance.  Given that I made all of these arrangements months ago, one would think I'd have done my homework before flying out here.  But I did not, not enough anyway.  Frankly I don't know where to turn.  I rented this house, near Colorado Springs, hoping to somehow bump up against the epilepsy community here.  (And if anyone from that community is reading this, I hope you'll say hello!). I joined a Facebook group for parents wanting to learn more about CBD oil for their children.  The folks there have been very supportive about exploring what could be helpful.

What I understand is that three elements extracted from cannabis have healing properties:  CBD (cannabidiol), CBN and THC which is the psychoactive substance in cannabis.   Mary's Medicinals provides a lot of info about their products and what extracts might aid what ailments.  I've learned that varying combinations of these elements can address different kinds of seizures.  Mary's Medicinals makes transdermal patches and gels that have different ratios of CBD to THC.   Without a doctor's script in Colorado a visitor like me is relegated to buying only products that are deemed "recreational".  Inexplicably, Mary's Medicinals can be found on both sides of some of Colorado's dispensaries: the medicinal and recreational.  And so I learned that I can purchase all of these extracts and potentially use them in combinations and very low doses to see what effect, if any there might be.

Doing so without a doctor's oversight makes me nervous.  Finding that they help and then not being able to access the products once we return to NY makes me crazy.  Dr. Devinsky recently wrote that families seeking treatment for their children with epilepsy should not be discriminated against based on their zip code.  Right on.  The legalities of providing my minor son with these extracts, and the prospect of getting them home with us is mind boggling.  I have read that CBD extract is largely from hemp and no more illegal than buying any hemp product.

We're not just spittin in the wind here.  Cesare has tried diets, IVIG, a dozen meds, the Transgeminal Stimulator and seven cranial and brain surgeries and still seizes almost daily.  If he's not a contender for a remedy, no matter how controversial, that could bring him some relief I don't know who is.

We have a lot to think about before we leave the land of hope.  Wish us well.


 

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.   

The Anticlimactic Climax

I brought tissues and everything, but I didn't use them.  It was a beautiful day and we celebrated with family and friends.  I was very, very proud but I didn't have that heartbreaking rush I was expecting.  It will hit me, I think, soon enough.  Cesare "marched' with his service dog, Walden, who was oblivious to his dapper mortar board falling off his head.  Cesare's high school has so embraced Walden that when Cesare was handed his diploma, Walden was given a fine bone.

Cesare's quite fabulous brother followed steps behind...

I am a very proud mom. 

Take that, ADHD, depression and epilepsy.  

Prom Update

Proms:

Griffin- 3

                                  Cesare- 0 And, he doesn't care.