Friday, February 10, 2017

America the Blind

Hello, my lovelies!

Yes, I know.  It’s been far too long.  I made myself a New Year’s Resolution to write every day and then promptly broke it. In my defense, you all know that I love the horror genre and lately I’ve been glued to my new favorite horror channel: BBC News. 

I checked my blog stats the other day and without a trace of modesty, I’m proud and humbled to say that people all over the world have visited these dark pages.  People from Egypt, France, Brazil, Nigeria, Pakistan, Russia, China, Canada, the US and beyond have all at one point (either intentionally or through circumstances of over eager internet surfing) have come to these pages because we are united in one thing.  Love for our visually impaired children.  It is my most sincere hope that you’ve found some comfort here.  That has been my mission all along.

I’ve got several other projects in the pipeline and it’s usually not unless something happens that I’m possessed with a desire to write a blindness blog post.  Well something has happened, I’ve been possessed and I feel a bit of a rant coming on. Brace yourself.

I am an American.  I haven’t lived in the States for a decade, but that doesn’t negate the fact that I’m a true Yankee-doodle-do.  I’m from New Jersey, which is by far the best State..the very best. Boom! Done! Deal with it. 

New Jersey has mountains, beaches, pine barrens and 1,672 different ways to tell the car in front of you to fuck off in traffic. Jersey also has an incredibly diverse population.

Long ago, in a lifetime far away, I worked in a busy industrial pharmacy.  You could have mistaken our staff meetings for a UN summit.  Any preconceived prejudices I may have about people were quickly washed away as I got to know my coworkers on a human level.  I’m a better person because I worked alongside Mohommad, Alecs, Mala, Irena, Rashonda, Shaniqua, Pam, Nidia, Mercy, Michele and all the other people from other places I had the honor of bonding with over pharmaceutical drugs.

We were all there holding each other up on Sept. 11th 2001.  We had patients in nursing homes waiting on their medication, we had to get the delivery out.  Some of my coworkers had spouses or loved ones working in the City that they couldn’t reach.  It was a very dark day. We were all terrified. But we stood together, united and finished the job.

In the wake of that tragedy, I saw both the best and the worst of people come out.  A few days later on my way to work I noticed that a gas station run by a gentleman from Afghanistan had been vandalized. That evening on my way home I saw three, big, intimidating looking white dudes on motorcycles guarding the gas station with him.  That’s just one example of the many extraordinary acts of kindness that I witnessed while thick, black smoke still poured out of the ruins of the twin towers.  

I was never more proud to be an American.  We rose up out of the ashes of disaster, we honored our fallen, we helped those we could and prayed to our various gods for those we could not.  It was a heartbreaking time, but the heartbreak was tempered with love, strength and unity.  That is what my America is all about.

Right now, I don’t know what the fuck is happening but I no longer recognize my country.  I’ve been watching the abomination that is the 45th Presidency with the same feeling of heartbreak I had 15 years ago.  Sadly this time that heartbreak is only tempered with confusion and dismay.

What the holy hell is happening people??

America is not about walls; it’s about welcoming people to the ‘Land of Dreams’.  

America is not about banning people based on their beliefs; it was founded in the name of religious freedom.  

America has a dark and seedy history of racism and sexism but noble heroes like Abraham Lincoln, Susan B. Anthony, Fredrick Douglas (still doing great work) Martin and Coretta King and so many other champions - with their words, and their passion and their lives – fought for equality and won.  It was a hard fight (and it’s far from over) but America went from having racially segregated schools to being a place where I had the luxury of forgetting to tell my blind kid that people come in different colors - in less than 50 years.  

I don’t understand the notion that America needed to be great again, because I always thought it was pretty spectacular. 

I’d like to think that if America had a physical disability it would be blindness - just like justice, faith and love.  It’s supposed to be a place where your character matters more than your color.  Where personality matters more than nationality. Where the love that’s in your heart matters more than the gender of the one you love because it’s a nation that was founded in the name of freedom for everyone.  This kind of thinking may be idealism to the point of insanity but it was the good kind of insanity - the kind that pushes people to overcome bigotry, fear and hate. The kind of crazy that tears down walls, not builds them up.

We have entered an era of a new kind of crazy.  And sadly, America’s blindness has been replaced with incredible short sightedness.  In a time that we should be focused on globalization, we’re busy learning about alternative facts and honestly, I don’t know what to say.  I’m not even completely sure what my main point here is.  

I guess I just wanted you guys out there, in Egypt, France, Brazil, Nigeria, Pakistan, Russia, China, Canada, the US and beyond that what you see on the news these days is not my America and the vast majority of Americans stand beside me in my outrage and disbelief. We are resisting.  We are speaking out.  We are teaching our children that what’s happening right now is wrong and we are desperately hoping that this Presidency will be both short lived and remembered only as the cosmic joke that it is.

I hope that you will all bear with us during this difficult time and join me as I pray for America to go blind again.

Friday, November 11, 2016

Full Circle

The plane takes off and I watch as Cali, Columbia is reduced to a tiny, toy village glimmering vaguely between curtains of rain.  It’s been a month, and while my little dude and I are anxious to get home, we’re leaving some truly spectacular friends behind and that’s never easy.   

Gabriel asks me if one day we can get on a plane just for a vacation and without a moment’s hesitation I take his hand and promise him that we will.  We’ve only ever traveled together for medical reasons… I’ve dragged him to doctor’s offices all throughout the America’s but the kid’s never experienced the thrill of getting on a plane to go somewhere fun.  He always has the inevitability of being poked, prodded, sedated and sliced looming over his head as we drag our bags through the airport but he has never once complained.  

He is a warrior, I’m so proud to have been blessed with this child.

Gabriel asks me to put The Big Bang Theory on for him in Spanish and after fumbling with the touch screen for a while I comply.  He’s become completely enamored with the Spanish language but I’ve wielded the phrase ‘Lo siento, yo no hablo Espanol’ like a shield during the past 33 days.  

It protected us from inquiries about my son’s postsurgical bruises and fresh zombie eye.  It kept us insulated while he recovered from another major surgery.  It kept me sane while I came to terms with the overwhelming (and shocking) sadness I felt over the loss of my son’s other eye. It kept me safe as struggled to make peace with the fact that a chapter in our lives is now closed.  Lo siento. Yo no hablo Espanol.

 I thought I was ready, but maybe there are things in life that you can never really prepare for.  Maybe you can only trick yourself into thinking you’re ready so you can do what needs to be done.
As the plane reaches cruising altitude, Gabriel laughs at Spanish Sheldon’s antics and I tell myself to shake off the layers of worry that have been clinging to me like cobwebs - irritating in their invisibility and difficult to dislodge.  I’ve got the world’s most amazing fiancĂ© waiting for me at home, and I don’t want him to see anything but the mounting excitement I feel at the prospect of being reunited with him.  It was a very stressful experience, but all I want to bring home is gratitude and, luckily, I have so many reasons to be grateful.

The surgery went incredibly well, the whole trip was laced with tiny miracles and most importantly I got to watch my son blossom in the warmth of his first true friendship with a peer.  This has long been one of my biggest concerns for my son: socialization.  I don’t need to tell you that kids can be very mean spirited and thoughtless.  Much like feral creatures, they’ll use any weakness they perceive to gain the upper hand and become King of the playground and my son’s weakness is glaring and debilitating.  

He’s been exploited, used, stolen from, teased, bullied and made - on more than one occasion - to feel subpar.  However, in Cali, he found a true friend and it is with joy in my heart that I write of her today.

We first met Nicole 5 years ago when we were in Cali for Gabriel’s first eye surgery.  Gabriel’s Father, Ivo, accompanied us, because remember: ‘Lo siento, yo no hablo Espanol’.  While our romantic relationship crashed and burned like a model rocket held together with scotch tape and silly string, an abiding friendship rose between Ivo and myself out of the ashes of the love we both have for our Little Dude.  We set out to Columbia not really knowing what to expect, but we never even remotely expected that it would be over 3 months before we got back home.

The days bled into one another as Gabriel was bumped not once but twice from the donors list.  When I learned that my Spanish speaking co-parent had to leave to attend to some pressing work he had at home, frankly, I was terrified.  The prospect of being alone in a huge city where I didn’t know anybody or speak the language was daunting to say the least.  My saving grace, was a man named Daniel.

Daniel was the only English speaking employee at the hotel where we stayed.  I shyly asked him, the day before Ivo left if he could help us with a few things, like ordering dinner or telling taxi drivers where we need to go.  He did better than that.  He took us under his wing and checked on us every day.  When he discovered my son’s love for walkie talkies he made Gabriel an honorary evening shift bellman and christened him Eagle #1 on the airwaves.  That weekend he introduced us to his beautiful wife, Lorena and their lovely little girl, Nicole.

Gabriel was 5 and Nicole, 4 when they met.  They were both incredibly shy with each other at first but a trip to the amusement park and 20 minutes in the ball crawl later they were thick as thieves.  I noticed immediately how good Nicole was with him, how she seemed to understand immediately that Gabriel was blind and began to anticipate his needs:  waiting patiently for him in the bounce house, taking his hand as they walked.  It warmed my heart, but at that time Gabriel spent most of his time with older children who also looked out for him, so at that time I didn’t realize what a treasure Nicole is.

We spend a few enjoyable days with them and eventually had to say goodbye.  Five years slipped by in the twinkle of an eye but Gabriel never forgot Nicole.  As it turns out, she never forgot him either.
When I learned that we’d be going back to Cali for surgery in Gabriel’s other eye and that this time Ivo would be unable to accompany us, my first message was to Daniel (you gotta love Facebook).  I was nervous, afraid and dreading being alone with the kid for the hot mess of stress that was coming our way.  Daniel’s response turned it around.  He and his girls were excited to see us and they promised to help us out in any way they could. 

We saw our friends the first full day we were in Cali and spent as much time as we could with them in the month that followed.  Sadly, Daniel’s work schedule didn’t allow him much free time but Little Dude and I had a great time with the girls.  I’m so happy to have gotten to know Lorena - she’s a wonderful friend and an amazing mother who I deeply respect.  

For Gabriel and Nicole, it was as if no time had passed at all and this time I marveled at how wonderful she is with him.  Having experienced other children interacting with Gabriel in the interim, I’ve come to fully appreciate how rare and precious this little girl is.  I also feel deep admiration and appreciation for how her parents are guiding her through childhood.  She is polite, considerate and an all-around beautiful child.  

With that in mind, it won’t surprise you to learn that Lorena stayed with me during the surgery and told me amusing stories to keep my spirits up.  What a far cry from last time, when I sat anxious and alone with no way to ask anyone what was going on with my boy.  While Gabriel was recovering - rocking the zombie eye - Nicole never once said a word about the way he looked.  She simply held his hand, as she’d always done and guided him along the treacherously uneven sidewalks of the city.

The plane hits a spot of turbulence and Gabriel laughs as he always does but the smile quickly fades from his face as he realized we’re descending. “Nicole is far from us now” he informs me sadly.   I’m struck, once again by the unfairness of life.  My kid finally makes a wonderful friend who sees the amazing guy he is under that layer of incidental blindness and we have to leave her behind and return home where, sadly, children who accept him are few and far between.  I’ve managed to shake off the last gossamer strand of my stress, but the sorrow on my little boy’s face tugs on my heartstrings.

“We’ll be back” I tell him and we will.  In two years he’ll need bigger lenses and our friends will be waiting for us.  In the meantime, when other kids get him down I can tell him that somewhere out there is a beautiful little girl that loves him and celebrates being his friend.  I can assure him that not all people will weaponize his disability.  On his worst days, I can remind him of Nicole, Lorena and Daniel.  And on my worst days, I’ll remember them too.

Monday, October 17, 2016

One more bitter post...

      So, I’m sitting here with my friend cheap-ass-box-of-wine and I’m allowing myself to feel all the rage I’ve been suppressing for days.  Gabriel’s surgery went incredibly well and for that I’m extremely grateful.   He handled himself like a champ, until they came at him with the gas mask, and then he fought like a banshee.  I’m sure it wasn’t nice for the surgeon to have to perform the operation after a freakishly strong 9 year old kicked her in the solar plexus, but she rallied and did a wonderful job.

     Gabriel didn’t see me dissolve into tears after the finally managed to get him down and I had a lovely friend to sit with me during the operation.  This time was better than last time because I knew what to expect and how best to take care of him after the surgery.

    Right now we’re in the full blown zombie eye phase of this process.  He’s wearing a clear plastic conformer over his newly reconstructed eye but tomorrow he’ll be fitted for a new prosthetic lens and hopefully we’ll be on our way back home soon.

    This brings me to the main point that I had in mind when I decided to write a post tonight.  Here it is:  (sit down because this may come as a shock and a surprise to you all).


   All of them.   

    Well, no.  Not you my lovely, enlightened blog followers….but basically everyone else.
    I found myself in a paradoxical situation today where I was really happy that my little dude couldn’t see the way other children were pointing and staring at him, yet they probably wouldn’t have been pointing and staring if he could see.  I’ve also been cursing my inability to speak Spanish the whole time we’ve been in Columbia, yet today it was a blessing since I wasn’t able to tell said children what little douchebag toe-rags they are.

   On some level, I get it.  He’s got a full blown zombie eye that’s right out there for everyone to see because I refuse to make him hide it under sunglasses.  I don’t want him to feel ashamed about who he is.  He’s the blind dude with (now two) freak show eyes and I want him to own that shit. He can’t see the way people stare and step back in revulsion, but I can.  And then I have to pretend that it doesn’t phase me.  It’s draining and I’m already tired from being away from home and having to watch my boy suffer and being alone in this hellish situation and the unending grief of knowing that my boy will never be able to see.  Then I’ve got to deal with a bunch of kids looking like my kid like he’s a gruesome crime scene.

   Pffft… It’s too much.

   Now, you might be asking yourself where these children’s parents were.

   When I was a child my parents taught me this crazy thing called ‘Manners’.  One of the first lessons in the ‘Baumann Family Charm School’ was that you don’t stare at people.  Especially not people who are different.  Had I even done what these children did today I wouldn’t be here to write these bitter words.

   I don’t know what parents are teaching their children these days, but it’s clearly not basic human decency.  Probably they’re too busy teaching them to work their Iphones.  Maybe I’m hypersensitive because of the ordeal we’ve just been through, maybe I’m home sick and tired and cranky, but I don’t think so.  I think people are becoming self absorbed to the point that they don’t care about anybody else.  They don’t care about ostracizing others, they don’t have enough empathy to put themselves in anybody else’s shoes.  They just don’t give a crap about anything anymore.   And it’s really sad.

    Gabriel’s not sad though.  He’s light as a feather knowing that the Damocles sword of surgery is no longer looming over his little head.  He’s agonizing about what color eyes to pick out and pretty happy that he’ll have a matching set for the first time in his young life.  He doesn’t see them stare.  I do, but once the rage monster in my head calms down I’m left feeling more sad for them than for us because these people are far more broken than my little boy.  

    I teach my child that a life without compassion is no life at all, but I also have to teach him not to expect compassion from anyone else.  It’s not easy, but doing the right thing seldom is.

   This surgery marks the end of some things.  It’s the end of one chapter and the start of a new one.  There’s no hope now, of any miraculous fix for his broken eyes, but that in itself is a blessing and our path forward is easy to see.  So they can stare all they want.  My little dude doesn’t care.

Monday, October 3, 2016

We shall eat cake

The stars are hidden behind low slung clouds in Columbia tonight.  It was a beautiful day but the night feels close and oppressive, but maybe that’s just me projecting my feelings on the sky.

My Little Dude is sleeping and he looks like an angel, dark lashes casting a tiny shadow fringe over his face.  He’s hugging his new stuffed Koala and I have to take a moment because I’m overwhelmed by the miracle his existence. I feel fierce pride in the young man he’s becoming and terror at this last hurdle that looms ahead of him.

On Wednesday they are talking his other eye.  We set out for Cali believing that he was here to have a minor surgical procedure and get a new pair of matching prosthetic lenses. On the plane his biggest concerns were the color irises he’d choose, where we were going to score some tres leche cake, when we were going to see the dear friends we made here last time and how soon we could get back home.  We thought we might be here a week and were worried we wouldn’t have enough time to do everything we wanted to do.

Boy, were we fucking wrong.

In a cruel twist of fate, it turns out that his right eye is slowly going the way his left did all those years ago.  They are going to majorly reconstruct it, leaving him with two zombie eyes.  After this, it’s going to be over – both the need for any medical intervention and the gossamer thread of hope that one day he’ll somehow see.  

I’m here alone and I can be brave during the day but the night swallows me whole.  I’m worried about the surgery, his future, the way he gets bullied by kids and all the things I can’t control which is pretty much everything at this point.  This is a very dark time for me.  I can only imagine how he feels, because his darkness is both literal and never ending.

The surgery takes between 3-4 hours.  This eye is not as damaged as the other one was so they can use his own ocular tissue to reconstruct a foundation where the prosthetic will rest.  The point of this surgery is twofold, he’ll be saved from the pain of inevitable glaucoma and his face will look ‘normal’ as he grows.  He’s lucky.  

Some children born with his condition don’t have the luxury of having these surgeries so on top of being blind they have the stigma of sunken, painful eyes as they grow into adulthood.  I’m lucky, because this time a friend will be by my side as I sit in the hospital waiting room…a friend who can translate for me and offered to make him soup for when he’s recovering.  

I keep telling myself how lucky we are, trying to drowned out the voice in my head that’s screaming about the gross unfairness of all of this:  blindness and bullies and all the things my child won’t ever get to do because he can’t see - the physical pain that’s coming his way and the emotional pain that he feels when kids taunt him and how lonely it is for him sometimes and how I'll never get to look in my son's eye again.

Tonight I’m finding a dark, poetic beauty in the fact that I can’t see any stars.

But tomorrow we’ll get that cake.