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.

Tuesday, February 3, 2015

Sneaky Little Crayons

Hello Dear Blog Follower,

          I’m delighted to find you on my black pages again.   If you are new to the darkness, welcome!  If you’re one of my avid, rabid readers welcome back and thanks for following the misadventures of the little blind Dude and myself.

                I was recently informed that this little blogging project of mine would get more attention if I personalized it up a bit.  I could do that.  My little boy has a smile that would melt a stone heart.  He’s absolutely adorable and all modesty aside, I’m not too shabby myself.  I have so many pictures of Gabriel over the years.  From incubator to Zombie eye to yesterday, I could fill these pages with color and smiles and give you a better sense of who we are.

                But I won’t do that.

                There are several reasons that influence my decision including (but not limited to) the fact that I value my privacy and by extension my son’s.  The internet will live forever and some of the stories I tell here are deeply personal.  It is so much easier to bare your soul from the shadows, plus in years to come my boy might be completely mortified about the tale of his massive poop in Cali, Columbia. 

More than that, you don’t need to know us that intimately.  This blog is designed to reach a very specific group of people:  the parents of blind children.  It dosen’t matter who we are, what matters is what we do and hopefully the pervasive message in each of these posts is one of hope.  That it’s going to be ok.  That you will make it through the dark, as we do and that you are not alone.

However, there will be dark days.  There will be times that you see children carelessly running, biking, kicking a non-modified ball and the most secret parts of your heart will cry out, in sorrow or frustration or rage. 

I had a moment like that today.  I had a little time this morning and decided to get Gabriel a Valentine gift.  I sashayed myself to the local toy store and made a bee line for the trucks.  Then I had second thoughts.  Last time I counted Gabriel owned no less than 137 wheeled toys and plays with two of them.  So I thought I’d mix it up. 

I got him this weird digital bird thingy that interactively whistles with you.  It looks pretty cool, I think my little guy is going to love it.  There’s a chance that it might be incredibly annoying and might have to go ‘mysteriously missing’ after a spell but I’m not sure yet because it came packaged in what I can only assume is multiple  layers of titanium disguised as plastic and the toy store proprietor was watching me like a hawk.

Clutching my titanium ensconced bird, I took a quick trip around the rest of the store to make sure I wasn’t missing out on a playtime gem and there they were.  The crayons.  The people at Crayola have really stepped up their game.  Bold beautiful colors, soft pastels, neon…it’s visual candy especially for a lover of art such as myself.

The sight of all those art supplies took me down.  Right there, in front of the poster board I completely lost my shit.  It was bad.  Hot tears of regret were silently streaming down my face and for a moment I had absolutely no control of my emotions.  Talk about mortifying.

For a moment I thought I would have to ditch the bird.  I really didn’t think I was going to be able to pull off getting to the register and finishing my transaction.  But then I remembered:  I am from New Jersey.  No Crayon will defeat me.

I dropped down my sunglasses, sucked up my snot, dried my cheeks, hitched up my big-girl pants and paid for my bird.  I even had it gift wrapped.  I boogied out of the store made it to my car and gave myself 5 minutes to cry.  I was done in three, because while my heart may have it’s moments of weakness my head knows the truth: those tears don’t do a single thing.  They will not fix his eyes.  They will not make me stronger or better or enrich my life in any way.  All they will do is allow pity to creep up behind me.

Pity is a nasty creature.  It’s cousin – Compassion, is one of the best qualities a person can have.  Compassion allows you to understand people.  Compassion inspires you to reach out and help someone.  It allows you to experience very human emotions that might not necessarily be your own.  Compassion helps widen your world, it helps you grow.

Pity does not do this.  Be it self-pity or pity for others, it only encourages you to feel sad.  It encourages you to dwell on injustice and the cruelty of the world at large.  Like tears it does nothing.  It must be fought off at all costs.

So I had my three minute crying jag in the parking lot of the strip mall, took several calming deep breaths and drove home.   The funny thing is, I never have those moments when I’m with my Gabriel.  The joyfulness of his spirit buoys mine.  He is the light that gets me through the dark.

I’ve told you all along that it’s going to be ok, and it will.  However, I never promised that it would be easy, because it won’t.  There will be moments of doubt, sadness and the worst pain that you can imagine.  The most important thing is to make sure they are only moments and never allow those negative feelings to color your view of the world. 

I won’t personalize this blog anymore than I have for another reason.  I like keeping you in the dark.  It’s good practice for relating to your kid.

Monday, January 12, 2015

Pretty Double Edged Swords

                It’s a new year and I find myself feeling very reflective.  I’ve been here for almost 38 years, and in my life the world has changed so vastly.  When future robot Historians write about this time they will refer to it as the Technological Age. They will smugly detail their rise up above the carbon based bipeds who were too busy watching stupid videos on Youtube to notice that they were slowly being sucked into a Martix of sorts.  Ehh…whatcha gonna do about it?

                The most notable differences, for me, is that the world has somehow become both bigger and smaller at the same time.  All of this constant media connects us all, and yet somehow separates us.  It’s not unusual to go out and see groups of people sitting together, looking beautiful in the glow of their electronic devices but not speaking a word to each other.  The world flashes, and pulses with sound and pictures but day by day we are losing our humanity.

                Children grow up so fast these, but so many of them don’t go outside and play with each other anymore.  They chat online, and play video games but they don’t know how to play freeze tag.  They watch things on the television that would have shocked me in my youth (hell, some of it shocks me now) without batting an eye but are terrified of going out in the world alone, because we have to teach them that the world is a dangerous place. Because it is.

They've watched planes crash into buildings full of innocent people, they've seen bombs rain down on other innocent people and in the back of their minds they wonder if today is the day that one of their classmates will walk into school with a gun and start shooting.  The things they see on the news can never be unseen.  In my darkest moments, I can find a little perverse peace in all the horrible things that my boy will never have a visual image of burned onto his retinas.

                The world is also very stimulating now.  Just a hundred and fifty years ago people rode horses, sent telegrams to each other and marveled at the awesomeness novelty of electricity.  Sometimes I think it would have been easier for Gabriel to have been born in those days.  People talked to each other as their primary form of entertainment.  The read out loud, they made things with their own two hands and went to potluck dinner dances  That scenario is moot, however for it is very unlikely that Gabriel or I would have survived his traumatic birth 150 years ago and had the chance to spin yarns by the fireplace. 

                Here in the 21st century, there are so many parts of the world you need eyes to experience.  Movies and television shows have become a staple in most peoples lives.  They talk about them around the water cooler at jobs they've driven their cars to, while showing each other video clips and gifs.  

                My primary concern for my son’s future is twofold:  Will he be able to reach a level of independence that most of us take for granted?  And will he be forever left out because of all the things he can’t see? 

                I could drive myself crazy thinking about him, as a young adult in his first apartment, stumbling and spilling some juice on the floor.  Will he be able to clean it all up?  Will he miss some and be invaded by ants?  Will he realistically be capable of living alone and drinking juice?

He doesn’t get invited to many birthday parties or play dates even though he has a lot of friends at school.  I know why - parents don’t want the responsibility of having a kid who can’t see cruising around their houses.  Perhaps if I was in their shoes, I would feel the same.  Will this be a pattern in his life?  Will his friends exclude him for fun times when he’s older because he’ll always need a little extra help? 

                I have no answers to these questions, therefore I don’t often allow them to haunt me.  I focus on the here and now, and hold on to a hope.  That one day technology will bring him a benign seeing-eye robot who will help clean up the juice he spills on the floor and make it easy for him to go out and hang with his friends.  I pray that the same technology that is rapidly changing the very fabric of society will enrich his life by letting him live it the way he wants to, not just the way he can.