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.

Friday, May 13, 2016

Something Else Entirely

Little Dude is in the 3rd grade now and our days are crazily busy.  Long gone are the lazy times we spent groping fruit at the supermarket, harassing people into letting us check out their cool stuff and whiling away our days basking in the sunshine while learning mobility at the park.

The only part of our younger years that remains the same is story time and story time is my favorite part of the day.

Little Dude is no longer the blind guy, who struggles with things that come easy to everyone else - he's the hero going on quests to save the world.

I'm no longer a Mom, who worries about everything from her child's vegetable intake to his ability to cope in a world he can't see - I'm the all-seeing narrator, opening pathways to other worlds.

It's the one time of the day that it doesn't matter that Gabriel can't see.  As I read to him, he is free to envision any thing (or nothing at all) but he is learning more about the world by hearing about the way other people see things.

Right now, we're reading 'Harry Potter'.  I couldn't be happier, I love the story and I love reading it to my son.

Gabriel was into it.  Hardcore.  He was pretending to be Harry at every turn of the corner.  He'd try and alohamora the door open so he could wingardium leveosa our grocery's into the was adorable.  And unexpected.

Gabriel struggles to comprehend the mechanics of the world on a level that anyone with eyes that have ever seen can't understand.  He uses a lot of mental energy just trying ti figure out what's going on around him.  That doesn't leave a lot of room for playing 'Let's Pretend'.

 And then something happened.  During a rousing game of make-believe someone told Gabriel that he can't be Harry Potter. Because Harry Potter is not blind.

This is a true statement.  Harry Potter is not blind.   I watched as Gabriel thought about that and I saw some of my his enthusiasm flit away as he realized that his hero has something he doesn't have.  I thought I saw a little spark of magic behind he plastic eye fade as he thought about that statement more complexely.

My son doesn't really have any fictional heroes that he can relate to.

I started thinking about all the stories we've consumed during 'story time' over the years and guess what?  None of the protagonists are blind.  None of Beatrix Potters characters are blind, none of the main characters in Percy Jackson are blind (and the one character who is blind is a total asshat) and none of the Avengers are blind.

Daredevil was, but he was both blinded by an accident (which is different than being born blind) and pretty much ruined by Ben Afleck's interpretation. 

I was feeling really sad about that, but then I remembered who I am.

I am a writer.  From New Jersey.

I can do anything, including creating a hero for my son.  And your son.  Or your daughter.  Maybe for any kid who has ever felt overwhelmed and lonely in a world they can't see.  I can try, at the very least.  Soooo.....

*insert drum roll*

I present to you something I have never given anyone before:  a story of mine in rough draft form.


*Chapter 1*

Once upon a time, in a land very far away, there was a mischief of mice that lived together in a great kingdom under the gnarled roots of an ancient oak tree in the middle of a wild, dense forest.
This fledgling kingdom had been founded under and was ruled by Queen Amelia, who was both generous and fair.  She loved her subjects and worked diligently to keep them safe, content and protected.  This kingdom was not at all your typical mouse dwelling.  Not just a hodge podge of messy burrows and dank dens like you might imagine, it was a vast labyrinth of cozy nests and food storage areas that circled a city of sorts, the heart of which was her castle.
The Queens castle was a marvelous structure of wood and glass made in the image of the castles of the day.  There were large colorful windows made of scavenged bits of broken glass.  There were turrets and a large spiral staircase that lead to a tower balcony where the Queen could overlook her city.  

Mice hurried across the city square, scurrying toward their various responsibilities.  The marketplace was a bustling riot of color and sound as goods and services were bartered for and traded.  A line of young mouselings clapped delighted hands at a puppet show and a line snaked from the sweet nut shop all the way down to the tailors.  The Queen knew that below the upper levels her gathers were filling the coffers with nuts and grain enough to last the long winter and even deeper below that there was a supply of fresh cool ground water.  

Queen Amelia stood on the balcony feeling quite wonderful as she surveyed her domain, she was never happier than she was watching her flourishing Kingdom. Not so long ago mice were wild nomads, constantly running from the terrors of the woods… but our story does not begin with her. 
It begins on the far outskirts of town, in the nest of a gatherer and his wife who were brand new parents.  The day our story begins they were very concerned about their baby.

It was early morning on September 30th and Alderon was just two weeks old.  In features and fur he favored his father, he was sleek, soft and lovely a warm golden brown but for the rest he was his mother’s child.  He had inherited not only her wide brown eyes and long, graceful paws but also an indefinable aura of gentleness and calm.  Yet, his Mother, Tabatha, was not calm on this particular occasion. She was scared and every ounce of worry she was experiencing on this bright, crisp Autumn morning was vibrating through the tips of her whiskers as she hurried toward the doctor's office.

Alderon was little more then a bit of fluff swaddled in a blue blanket, yet almost everyone in town knew who he was.  His Father, Tobias LAST NAME was not just any gatherer, his was a Scavanger.  He led a small, elite team of mice far beyond the kingdom walls and collected rare treasures, medicinal plants and occasionally a nice piece of aged cheese.  Tabatha, herself, was a valued advisor to the queen and after many childless years of marriage, news of the blessing of their child was called a miracle and his birth was celebrated with wild abandon.

Yet, for Tabatha, the celebration ended prematurely as she became increasingly convinced that there was something the matter with her son.  Alderon never looked at her, or showed even the slightest interest in anything going on around him.  He would wince at loud noises but other than that he was an uncommonly quiet baby.  He didn’t cry often, nor did he ever smile.  

The neighbors laughingly declared that it if they didn’t know it as a fact they never would have believed that the LAST NAME’s even had a little one in the nest.  Tobias laughed heartily at the lighthearted statement, proud that his son was such an easy baby but Tabatha only managed a weak smile.  The neighbor’s words drove her deepest fear closer to home, because, in her heart of hearts she knew something was wrong with her son. She knew it as sure as the knowledge was a monster and she the only one who could see it.  It chased her throughout the day and threatened to devour her at night but at first no one believed her.

Tobias would smile indulgently when Tabatha voiced her fear.  He would stroke a gentle paw down her back and tell her she had the curse of all new mothers: worrying too much.  The doctor looked Alderon over from nose to tail tip and proclaimed him a fine specimen of mousehood.  As the days progressed, Tabatha became consumed with all manner of terrible thoughts as to what could be wrong with Alderon, each one more horrifying than the next.

It was with those thoughts swirling in her head, and the newfound confirmation from Tobias that he, too, had started suspecting that Alderon wasn’t quite right that Tabatha scurried into the office of Dr.NAME and cuddled Alderon on her lap as she waited for their turn.

A half an hour later, Tabatha left the doctor’s office.  She didn’t know what to feel.  Part of her was relieved that most of the horrible things she’d imagined had not come to pass, yet most of her was terrified to think of her son growing up in a world he would never see. 

However, in this world –even if you can’t see it- there is seldom darkness without some light.  
Tabatha and Tobias sat fireside that evening, numb with shock from the news, their paws intertwined tightly together holding Alderon between them. They were each overwhelmed by all the things they had to say, but couldn’t say anything at all.  They were watching the ever present serious look on their child’s face when out of nowhere, Tabatha began to hum.  It was a song every mouse knows and soon her hum turned to song.  

 Tobias joined in by the second verse:

Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life, you were only waiting for this moment to be free.

By the end, they were both singing as if the living room were a stage and finished by administering ticklish kisses to whatever baby part was in easiest reach.

The last note they sang seemed to hang in the air and merge with the sound of all those silly kisses.  It could have only lasted a moment but that moment changed everything.   Tabatha and Tobias glanced briefly at their son and then looked at their son and saw (for the first time) the metamorphic  facial transformation that occurred on Alderon’s face when he smiled.  

*Me again:  I'm not going to promote this post in anyway, but I would love the feed back of anyone who stumbles upon it.

Saturday, February 6, 2016

Fucking Feelings

I’ve been reading over my previous posts.  If you haven’t recently done this I suggest you do so as soon as humanly possible because I, for one, find myself to be a delightful combination of charmingly brutal honesty, home-spun wisdom and shockingly creative uses of the F word.  What struck me the most, on my recent perusing of past entries, is how fucking full of shit I am sometimes.

I’m struggling these days and none of my words, past or the ones rattling around in my head right now are of any comfort to me at this moment. 

Gabriel had an eye doctor’s appointment on Monday.  Another surgery…another lens.  Nothing nearly on the scale of last time, minor surgery just to toughen up the cornea on Gabriel’s non-zombie eye in preparation it for a prosthetic lens.  I knew this was coming.  It’s absolutely the right thing to do and the right time to do it. 

As we left the doctor’s office I was joking with my Little Dude about the interesting looks he could sport once he’s double lensed.  He could have bright green eyes like his current hero, Harry Potter.  He could  have chocolaty brown eyes like his father or freaky grey ones like me.  He could get black light responsive ones for parties in clubs when he’s older…the possibilities are endless.

I have to say these things. 

I have to make it ok for him, but those careless words burned my throat like acid which was good because they had to bore through the lump of unshed emotion that descended on my chest as I realized that this is the absolute end.  There is no more hope, no 8th day miracle, no FDA approved robot eyes that are going to allow my little boy to run and play, just like all the other little boys.

I have known this for 8 years. 

My brain has accepted this, studied it extensively and molded it into a paradigm where blind is the new normal.  To the world I present the picture of a proud, confident (all be it a bit disheveled) parent like any other.  But the sad fact is, my heart is broken and while I’ve learned to live with it and the joy of watching my incredible child grow has mended it, it will never really heal.

The five stages of grief as defined by the Kubler-Ross model are as follows: Denial, Anger, Bargaining, Depression and finally Acceptance.  In my personal experiences with grief, I have found this to be pretty much spot on accurate.  I went through it with the death of my mother, and then years later with my father.  However, as the mother of a fucked-up* kid: I’m starting to think that this particular grief process  is more like a revolving door…you never really know what you’ll be stepping into.  You can flirt with acceptance but there’s never really any final closure.  It’s a situation that just goes on and on.  Much like Sonny and Cher said of the beat.

I’m a little depressed. 

There, I said it.  That feels a little better.  I’ve been berating myself for the way I’m feeling and trying to shake it off like I usually do because nothing really happened and things are good.  Life is pretty sweet these days.  I have absolutely everything I need and most of what I want…where the hell do I get off feeling depressed?

I received confirmation from the doctor, of something that I already knew was going to happen and it depressed the hell out of me.  In that one moment all those feelings that I try so hard to deny came crashing down on me like a tidal wave.  All the anger and guilt and pain I have ever tried to run away from caught up to me and dragged me down.  The most difficult thing is: I can’t let it.  I have to be ok, because my kid HAS to be ok.

I am his primary parent, his teacher and his role model in ways that he’ll never appreciate unless one day he has a child of his own.  I can’t cry for him, because that will teach him to cry for himself…but you know what, you guys?  I want to.  I want to get in bed with some chocolate, some booze and a pack of adult diapers (walking to the bathroom seems like a drag) and stay there for a week.  I want to scream and throw things in a spectacular tantrum of temper that would put even the unruliest 3 year old to shame.  I want to wrap my sorrow around me like a Jedi cloak and lurk in dark shadows pondering the collective works of Edgar Allen Poe and Nicholas Sparks. 

I want to feel my feelings.

But I can’t, I don’t have the luxury of being depressed and though it doesn’t feel like it right now, that is a very good thing.  There is a difference between feeling your feelings and letting them run your life, and I’m not going to be a back seat driver in my own existence as sadness takes the wheel.

I gave myself this morning.  I skived out of work early, wrote this and am now going to get in bed with some chocolate for an hour (probably not enough time to warrant the use of a diaper) and just let myself feel bad, but while I’m doing that I’m going to hold on to my happy thoughts so that when my hour is up, I can go get my boy from school and do something fun with him to celebrate the weekend.

I tell you all it will be ok, and it will be.  It will be more than ok, it will be better than you can imagine.  But sometimes it will feel really bad.  And I guess that’s ok, too. 

*yeah, yeah…special needs, my ass.  My kid can’t see and that’s fucked-up.

Saturday, November 14, 2015

The Word I Couldn't Say

 I believe that I mentioned in an earlier post that a while ago I met with a woman whose daughter has the exact same eye condition as my Little Dude.  She was understandably nervous with a huge surgical procedure looming ahead of her child.  Since Little Dude had the same surgery the previous year I was more than happy to share my experiences and ultimately encouraged her to go ahead with the surgery.

During the course of the conversation, we wandered off track and started swapping war stories.  Some moms are soccer moms but we’re blind moms and I’m proud to say that we’re doing a pretty darn good job of it.  Both of our kids go to school with sighted children and are holding their own so we formed a mini mutual admiration society and bonded over instant coffee and Retinopathy of Prematurity.

Theresa is the antithesis of me.  She’s perfectly coiffed and her purse matches her shoes at all times.  She wears tasteful jewelry and bakes cupcakes for affairs. I’ve never heard her say a harsh word about anything and once I’m pretty sure one time I saw a blue bird land on her shoulder just to chirp hello.   She probably gets all her kids permission slips signed on time and is involved with the PTA.  She is Super Mom.

Me?  I’m a complete mess.  I roll up in jeans and a T-shirt with ink stains on the sleeve, usually about 5 minutes late.  Sometimes I use a twist-tie when I can’t find a ponytail holder.   Last week a blue bird landed on the table in my backyard and I chased it away with a broom and a string of creative curses. Gabriel had a walk with school yesterday and I turned in the permission slip when I picked him up…after the walk. It had a stain on it that looked suspiciously like Chardonnay.  I’m constantly amazed that I’ve managed to keep, not only myself - but another person, alive for all these years. I’m Slappy Mom. 

Theresa and I could not be more different, yet she is the woman with whom I can identify with, more than anyone, as a Mother.  She’s the only other person that I’m intimately acquainted with who understands what it’s like to walk in my shoes.*  

During the course of our conversation, Theresa mentioned that when her daughter was younger, she could never said the words: She’s blind.  It was an epiphamatic moment for me, because I always thought I was the only one. 

I remember those days well.  Carrying my infant son in my arms and the weight of his prognosis in my heart, I would shamble through life trying to avoid social interaction with anyone who didn’t already know my son was blind.  When it came up (and it did) I would launch into a verbal dance around the issue and ultimately say something like; “he doesn’t see” in a manner that would suggest it was a bold lifestyle choice. I just couldn’t make myself say the B word.  Somehow, that little word seemed to embody all of my pain. 

I used to resent those nosy strangers who couldn’t help themselves from asking all the questions I was struggling with myself:  What happened to him?  Is there anything they can do?  Are they sure he’ll never see?  But I’ve realized that those encounters, as painful as they were at the time, helped me adjust to our situation.

These days it’s a different story.  A while ago, Gabriel and I were trying on drug store reading glasses and the pharmacist told me to be careful because they prescription was strong. Laughing, I said “Oh, don’t worry.  He’s blind anyway.”  Then Gabriel chimed in, “Oh, yeah.  I’m the blind dude.”

Theresa and I had a good laugh about it as our blind kids played together in the other room.  I’m happy to have her to talk with.  Her daughter has the same fear of public bathrooms as little dude.  They both struggle with cutlery and aren’t really great sleepers. Sometimes, we use each other as sounding boards and I think that it’s comforting for both of us to know that we aren’t alone.

And neither are you.

You’ll notice that it’s been quite some time since I’ve updated this blog.  I have a lot of excuses for myself: I’ve been really busy watching Zombie movies.  I’m pretty sure I’ve developed very late onset adult ADHD.  One of my houseplants had a health crisis a while back.  There was a sale on wine.  Video games exist.  But mostly, I’ve been in a different place in my head.  Having a blind child is no longer the core of who I am, as it was when Gabriel was younger and every moment of my life was devoted to finding out how to raise a blind child.  Gabriel’s blindness has become incidental, we’re too busy living to worry about the B-word.

Until next time, my lovely darkness dwellers.  Keep on lighting the way.

*Not literally.  Theresa wouldn’t be caught dead in my shoes. They don't match her purse.