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 fiancé 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.

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).

    PEOPLE ARE FUCKING ASSHOLES AND I HATE THEM 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.

   THEY WERE RIGHT THERE STARING TOO!!  WTF????

   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.

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.

A Brief Essay on Zombie Love

I’m in a bad place right now. 

 Not literally, I’m actually sitting outside.  It’s a beautiful evening and I have a glass of wine, a cigarette burning beside me and the luxury of allowing myself to momentarily have a bad attitude.  The past few weeks have been so crazy and I feel a little traumatized.  But I have a pen and a notebook.  I might not be able to write the story I want to write right now, but I can write something.  

So I’m going to try.

In moments like this, I am acutely aware how very full my emotional basket is and I worry that one more thing will make it too heavy to carry, that it will start to drag me down.  Unlike my little worry basket, I can never hide this one away.

One of the amazing friends I’ve been blessed with in life gave me the phrase ‘emotional basket’, many years ago, and I’ve often thought about it.  I’ve come to realize that every time life scars you, that scar takes up a little room in your basket.  Like actual scars, they fade as time heals them (unless you keep picking at them) but they never really go away.

But some of us…well, we get a lot of scars. Deep scars, that take up a lot of room in our baskets and don’t heal without massive keloids that will never fully go away.  Scars from battles we didn’t chose to wage, like watching someone you love in a hospital bed getting a chemotherapy drip even though they know they are losing the fight.  Like knowing someone you love has a serious problem that you can’t help them fix. Like losing a parent, or a friend, or a child. Like having a kid with special needs.*

There are people in the world who have experienced horrors I can’t even imagine.  There are people starving, there are people who have no homes, no jobs, in countries ravaged by war.  There are people out there who have no way to take care of themselves or the people who depend on them.  These people don’t have the luxury of sitting outside with a wine and an attitude problem.  I know this, I know ever moment of ever day exactly how lucky I am.  But tonight, the weight of my basket is disproportionate to the amount of strength I have left.  And there is very little in this world that I hate more than feeling weak.

So what do I do?  How do I get my strength back?

Aside from trying to find peace in the bottom of a bottle (it’s never there - but I valiantly keep checking) and paying exorbitant amounts of money to needlessly blacken my lungs I retreat into the Zombie Genre.  As I write this a particularly gruesome episode of The Walking Dead is mutely playing on a loop in front of me and very few people can understand why I find such peace in watching savage disembowelment, so I’ll tell you.

It’s simple, really.  Life is beautiful in Black and White.

There is something so elegantly satisfying about having an absolute villain.  The Zombies are bad but they can be fought and their motives are absolutely clear.  They don’t play head games, they don’t sneak around their main objective, they want to eat human flesh. Period.  If you can prevent them from eating you, then you win. Period.  No shades of grey.

It’s not like real life.  

Where a teacher, who is probably a decent human being, screams at her class and terrifies your blind kid to the point that he never wants to go to school.  Where you have to question your own judgement about even having him in a school with sighted kids, who might be nice kids - but are quite mean to him because he can’t see.   Where another surgery is looming, and you just don’t know if you can go through it again.  Where you are so tired of hearing how strong you are because in your heart you know that you’re just one scar away from being able to carry your own basket.

So I watch people getting their faces ripped off by Zombies.  I admire the special effects.  I plan how I would keep myself and mine alive.  I let myself drift away on a river of blood and gore.  For a little while, I can pretend like a world I can control exists.  When I come back to this world, and look at my son, my family, my accomplishments - my basket is somehow lighter or maybe I feel stronger.

So, tomorrow, I’ll be able to get up, drag my kid to school, go to work, run my errands, do the laundry, cook dinner, get the homework done, get through another day, grateful that no one is trying to bite my face off.  And maybe I’ll even have time to get on with the story that I really want to write.  

But for now, please excuse me.  I have an apocalypse to get back to.

* Ok, so I decided not to replace the term ‘special needs’ with ‘fucked-up’.  However, I am trying to come up with an alternative though, because anytime someone says ‘special needs’ I kinda wanna go Zombie on them.