Tuesday, May 27, 2014

Proving Ground

Cesare spent many years of his young life incapacitated by medications, hospitalizations and isolation.  His social growth lagged considerably behind his physical or even intellectual growth. As it is, he often prefers to relate to a screen instead of peers.  Although if peers came knocking, he'd jump at the chance.  But they don't.

We've been quite simply saved by two families that have surrounded ours all the years of our children's lives.  We spent Memorial Day with them and when the evening was over I was left with enormous gratitude.  Our friends' children have been quasi brothers and sister to Cesare and Griffin.  Zoe, now 22, has been extraordinarily generous to Cesare.  Many years ago, at their family's annual Easter Egg hunt, instead of hunting for the candy that Cesare could not have since he was on the (failed) ketogenic diet, she set up a special system for him in which he could cash in his candy for something special.  Zoe was only 11 at the time and came up with this quite on her own.  Aaron, Isaac, Jonah and Eli never shied away from Ces when he seized or turned away when we had to change a pic line at a gathering.  Isaac wanted to know more about Cesare's surgeries and made Cesare feel important when he saw him during the time that Ces endured six months with no skull over his right temporal lobe due to a post surgical bone infection.  (Isaac is pre-med now).  His quasi brothers never made him feel different.


Ces and his bubble tea.


Yesterday our friends, all of whom have perfected asian cooking, brought bubble tea to the party.  To drink bubble tea is a treat, to shoot the bubbles is sport!  To see them all together, chasing each other down, blowing the sticky tapioca balls through their hefty straws like blow darts made me smile- wide.

The wind up.



Cesare, Aaron and surrogate parents




Ces and brother Griffin


Griff and Jonah




Years, and years and years of dumpling dinners at Alan and Miriam's and everything-else-dinners at Janice and Dan's have made Cesare comfortable in other people's homes.  He has come to expect a fun time with no stigma, and no awkwardness.  It's as if our friends' homes are and have always been Cesare's proving ground.  It is where he tries out conversation and jokes.  It is where he has, over the years, found acceptance and brother and sisterly teasing.  It is where other parents snuggle in to the couch with him to explore his ideas about science or fart jokes.

Ces may have a bumpy road moving on in to the whole wide world as an adult.  But he could not have had a better, safer or more loving start.

Thursday, May 22, 2014

Pure Love

I work in a very unusual environment.  I am a psychiatric social worker in a special education school that accommodates emotionally disturbed middle and high school students as well as psychiatrically vulnerable high school students and middle and high school students with autism.  I have worked there for, well, too many years.  It has taken it's toll on me.  I've written earlier blog posts about some of my students whom I think are heroes and warriors.  All told, we have about 150 students in my school. While I am charged with caring for about 40 of the students, there is one individual on our staff that is dedicated to all 150.  He is ostensibly the "crisis worker" or "behavior specialist".  He is those things, yes, but he is more aptly described as pure love.  Miguel is 60 now but continues to have the stride and parlance of a 30 year old.  I have worked with Miguel for all of my 23 years at this school. His skills are not learned, they can't be taught.  He cannot make a YouTube teaching his technique  and he shuns any attempt to bottle it or name it and certainly to praise it.  Because, I would argue, it is pure love.  He makes every student feel as though they are the center of the universe.  He greets every teacher, social worker, bus driver and custodian as if we were his bests friend.  Students clamor for his attention, his approval.  He booms, he barks he scolds.  And every student, every single one accepts, repents and shifts.  Many of our kids call him Poppi.  From Columbia, this is in part cultural for Miguel but for most of my kids he is the father they cannot have.

Today we had a talent show.  Students, able and not, showcased their willingness to do whatever they do.  Some were talented songbirds, some told jokes..I think (they were indiscernible).  Miguel, a very talented musician himself, did all of the technical set ups and was the all around go to guy hovering behind center stage.   A 13 year old young man, Benny, who has autism and is the son of a former student of mine from this same school, performed his dance interpretation of "Killer" by Michael Jackson. Benny does not dally with social connections.  He dances through the hallways and screeches when spurned.  But on this day, he was a wealth of sunshine and showmanship. Our student body, the cons and the rejected the bi-polar and the self destructive watched tentatively.  Most know Benny and accept his antics.  But on this day, I watched students look to Miguel to lead them.  And when Miguel cheered Benny, and fist pumped clearly teary eyed, students erupted first with rhythmic clapping and then ultimately with a standing ovation.

Miguel's pure love is contagious. He makes soup on Fridays, for everyone- anyone.  He has a nickname for every student, all 150.  Over the years I've stood at his side in awe as a suffering student attacks verbally, physically and Miguel, ever even tempered, asks with pure love how he can help.  The student melts.  The child becomes his.

When he isn't pouring out everything he has to these kids, he works a second job at a nearby children's home helping to heal the most damaged children.  He's been their crisis worker for over 30 years.

How does one person do this?  How does one person perfect love in this way?  Accept without bitterness, give with no expectations?

Miguel is the gold standard.  He exists in a  place I cannot dream of inhabiting.  It would not be real for me.  I could not accept and love tirelessly, daily without snapping.  I snap too often as it is.  We should all have a gold standard to remind us of that which we are capable.  Like the studies that tell us we use only a small fraction of our brains.  Miguel teaches me that we use only a small part of our hearts... leaving so much for us to reveal.



Saturday, May 17, 2014

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.

Sunday, May 11, 2014

A Standing O


I had a delightful Mother's Day.  I told my husband and the boys that all I wanted for Mother's Day was for each of them to write a poem (and of course a really good meal out). Their poems were great! An excerpt from one...


"Thank you, Mom, for being the bomb         
And for 17 years showing me right from wrong
For helping me out whenever you are able
And for not making us sit at the dinner table...."   

Ahhh, I've taught them well.


I've been thinking about my role a lot today.  And I wondered, have you had this experience? You're having a conversation with others about parenting, life, etc. And someone says to you that they cannot imagine how you do what you do. Cannot imagine the life adjustments, the constant monitoring, the scanning of the horizon for new treatments.  And, I suspect they also cannot imagine the 'dreams deferred' as Cesare likes to quote from Langston Hughes. If you are like me, you say that you do what you need to do...what else is there?  Perhaps you add that he or she would do the same if dealt the same cards.  And you mean it.  

But what if we really let ourselves take that in?  What if we acknowledge that what we do, on any given day, is herculean.  We measure out the daily meds, we fight the school district, we maintain a measured calm when medical crises unfold before our eyes, we struggle to be fair to each of our kids when there is nothing fair at all about having a disability.  We hold down the fort and perhaps a job as well.  We might be trying to maintain a relationship and, god help us, a waist line.  And we are awesome. Not just today, on Mother's Day or on Father's Day, but every day.  We don't acknowledge that what we do is akin to being a superhero. To do so would make it seem as though our children are burdens, a hardship.  I say, let's shake that all off. Let's admit, if only to ourselves that we are walking and talking love machines.  We put it into everything we do.  We fall down, we screw up, but we get right back up and make it all happen.  Every day.  Give yourself a hand.  In fact, give yourself a standing ovation.  We, every one of us, deserves it.

                                     

Thursday, May 8, 2014

Share

Too pretty not to share.
I'm a little late to the party, this is a year old.  But so pretty.  Mumford and Sons doing  "I'm on Fire"  (Click if you can't see image.)


Share what inspires you?




Wednesday, May 7, 2014

Lustration

I don't know why this word stuck in my head all day, but it did.  I heard it this morning on NPR in a story about Ukraine.  The person interviewed defined lustration this way, "It is bringing something that was hidden or in the dark, in the shadows out into the open." I loved the sound of that.  When I looked it up on Merriam Webster, it had a slightly different ring to it saying that lustration was the act of "ceremonially purifying".  While both make me think of metamorphosis, I like the first definition that does not allude to something sinister or something that has been fouled (in fact the word is most often used to describe regime change in national government).

I feel encouraged by the notion of bringing something into the light.  It seems all I can think about these days is the approaching end to high school for the boys and the mandate to decide what's next, for both of them.  I keep picturing it as a birth canal, of sorts.  All I have been able to focus on is the inherent pain in the struggle to move through the canal.  But I choose now to see the process as moving into the light.  It's almost too much to completely hang my hat on, but what if, just what if what comes next is better?

I have allowed myself small periods of hope over the years, usually in relation to a new treatment for seizures: Tibetan healer, magic fingers, magic diet, magic drug.  But lustration is different than hope.  It is an act, a process, not an emotion.  It may require work and dedication but at the end of the process something new is born into the light.  Yep.  I really like that.

Sunday, May 4, 2014

Narrowing In On The Big Picture

This afternoon I was once again invited to speak at our local university's Take Back the Night March and rally.  Take Back the Night is a grassroots, largely college campus based effort to bring attention to issues of rape and sexual assault, and to quite literally take back the night..and the day and claim our environments as safe spaces, free of sexual assault.  And once again I prepared my remarks thoughtfully, highlighting one component of the rape culture that students can relate to and offered some direction.  My remarks this year focus on institutional betrayal.  I wanted to address Title IX violations on campuses that do not adequately follow through on complaints of rape, for example.  Featuring the newly released list of 55 campuses who are under Federal investigation for such violations.

I  wanted to bring their attention to the still missing 276 high school girls in Nigeria that were abducted from their boarding school because the terrorists that have been holding them for nearly a month are against the education of girls. I wanted them to know that there are reports that the girls are being sold for $12 to militants to be their sexual slaves and that the Nigerian Government has turned a blind eye.  I added to my remarks a quote from Nicholas Kristof at the NYTimes about how many nations have mobilized in the search for the passengers of the missing Malaysian airliner, but that there has been no serious search for the abducted girls, who outnumber the missing passengers on that fateful flight.   

So with speech in hand I stepped up to the microphone and, for the second year in a row, looked out over a sea of....15 students,  and delivered my speech.  The lack of students, at least on this day in this place, dedicated to social change got me thinking.  It got me thinking about feeling powerless to change things and apathy.  Now, I can't generalize in this way about my University's population of students, after all 15 of them showed up.  But I'm talking about our culture in general and myself in particular.  

I was thinking about the marches and the petitions etc. concerning epilepsy that I frequently bow out of.  It isn't apathy that confounds me.  Certainly not that, not when it is front and center in my life daily.  But I do feel quite exhausted.  Powerless, perhaps, but more so that I cannot imagine pulling back the lens to see the big picture.  

It angers me that on any given evening our (TV) dinner will be interrupted with phone calls from Save the Children, Paralyzed Veterans, The Leukemia Foundation etc, etc, etc.  But never have I answered a call from anyone raising money for or awareness about epilepsy.  However you won't find me making such calls, when certainly I could. 

I was thinking about what I actually do with my time.  Forward motion, or dead stop.  Those are my only two speeds I'm afraid.  The forward motion moves me through my work and gets dinner on the table(s).  It gets appointments made for Ces, drags Griffin through his Social Studies 12 class that COULD prevent him from graduating.  (The kid is killing me.) Then, dead stop.  I can lay back like no one you know.  Weekends are lazy and non-productive.  And that's just fine with me. But too frequently I look up and a month has gone by or a whole season.  

I think I need to build in time to plan, to set goals, to mobilize.  I would like to be more active in organizations like The Cure or attend Epilepsy Foundation functions.  I'd like to bother random strangers at dinner and ask them to devote some of their energy (and dollars) to addressing an illness that affects more people than multiple sclerosis, cerebral palsy and Parkinsons combined.  Just not today.  I'm going to take a little nap.