Going to Cali, Columbia in my Mind

 

I’ve mentioned that there is another little girl on the Island that is totally blind.  Cassianne and Gabriel are frienemies.  

Sometimes they are in love, sometimes they fight like the love has been dead for decades.  Their relationship is a complicated one, but there is a very strong binding between them.  They understand each other.  And they have the exact same problem with their eyes. Here on this tiny rock of an island they are each other’s only true peers.  

The same can be said for Casianne’s Mother, Trace and myself.  On this island, she is the only woman who knows what it is to walk in my shoes.  So, when the director of FAVI called me and asked if I would come to Braille lesson with Gabriel on Tuesday to speak with her about her daughter’s looming eye surgery, I agreed immediately, even though it meant losing one of my highly prized free afternoons.  

It also meant that I got to help someone, and all these long years of my son’s Thomas the Train obsession has given me a strong desire to be helpful and useful rather than causing confusion and delay. There was also the added benefit of getting to spend the afternoon with Gabriel’s Braille Coach Extraordinaire, who happens to be one of my favorite people.  I love it when stuff works out.

I brought my A game to the meeting.  Trace, is justifiably terrified and needed comfort and reassurance.  It was my aim to deliver both.  She’s literally walking in my footsteps, the surgery that her daughter need to have is the exact same one that Gabriel had in the end of 2012.  She will lose her eye and get a prosthetic lens.  It’s a very scary thing to think about, the finality of that decision.

Gabriel’s eye transplant took place in Cali, Columbia on Saturday November, 24^th, 2012.   We left for Columbia on October 17^th.  Gabriel was bumped off the transplant list twice before surgery actually took place.  Gabriel’s Father, in his role as Spanish speaker, was with us but had to return to Aruba for some pressing business.  

As he was leaving I laughed and said, “We’ve waited this long, what are the chances that they’ll call us for surgery while you’re gone?”

They called the next day.

So there I was, alone with my blind kid in country where I don’t speak the language gearing up for surgery.  Good times…  

No I’m kidding.  It was an absolute nightmare.  If it weren’t for my impressive ability to non verbally communicate (think of an unholy combination of sign language and interpretative dance), Google Translate (not as accurate as the Google people would have you believe) and medicinal Chardonnay I would not have survived.  

But through all of that, the worst moment of all was coming home from the hospital with a groggy, suffering Little Dude and getting into the elevator of the hotel.  

Gabriel had been absolutely obsessed with the elevator, and we had spent a significant portion of our unending free time riding up and down under the cheerful glare of the 1,000 watt fluorescent bulbs in the elevator ceiling.

I was carrying Gabriel as I stepped into the elevator.  I knew he was totaled because he didn’t ask to push the button.  The elevator doors slid shut and my baby asked me, “Mommy.  Why is night in here now?”

The sky fell.  I heard it in my heart.

I felt my knees weaken, but I was holding my boy.  I stood strong.  All of the hundreds of thousands of words I’ve learned in my life failed me save four, “It will be ok.”

It’s all I could say and I said it over and over.  His face was tucked into the crook of my neck, he could feel me saying it.  There was a post surgical basket taped over his eye.  He had multiple injection marks, already beginning to bruise and there were still sharpie marker marks on his face from where the surgeon had treasure marked the eye that was being taken.  

He was in his little, blue puppy dog pajamas and he smelled like antibiotic soap.  He felt smaller and lighter in my arms at that moment then he had in years and he fell asleep listening to me chant that four word mantra that got me through that night.  It will be alright.

Making the choice to let them take Gabriel’s left eye was the most difficult one I’ve ever had to make in my life.  I knew that he could still see some light with that eye.  I knew he wasn’t totally blind.  The Doctors never believed me (Whack-a-doodle Mother) but that is my child.  I knew he could still see SOMETHING and that knowledge made me want to let him keep his freaky eye. 

The sad truth is, it didn’t matter.  

The eye was not growing properly.  It was growing in an egg shape and bulging out of his face.  The bones under your eye’s growth depends on your eye ball growing (fun fact!) and the way Gabriel’s eye was growing was not forcing the bone to grow.  Without surgery his face as an adult would have been deformed.

The eye was also obviously causing him pain and discomfort.  He was rubbing it almost constantly.  I wanted to get a parrot and train it to sit on my child’s shoulder and squawk, “Don’t rub your eye!” because I was so bloody sick of saying it.

It had really been over since he was two anyway.  With no visual imput going onto his brain the pathways that allow you to make sense of what you see had atrophied.  Even if they had been able to fix his eyes, he still wouldn’t have been able to see.

It had to go.  I knew it.  I did.  It still took me over a year to decide.  Being the Parent is rough sometimes, right??

I think I was able to comfort Trace by telling here what to expect.  She’s freaking out, but she can see Gabriel how well he’s doing.  She sees me, joking around about the whole thing.  It will be a sad day when her daughter loses her eye, but we can give her a glimmer of the days after that, when things are better,

For me it became almost a symbolic commitment to sentencing my baby to a lifetime of being blind.  

It was only after I let it go that I realized that choice had been made long ago and I just had to get with the program. 

Not Bartimus

I was recently asked a provocative question:  “What obstacles do you face as the mother of a blind child?”

Huh.

Sadly, this question was posed during an interview for a local television program about living with disabilities and is the exact point that I started to come off looking a little…slow.  I sat there completely slack-jawed for a moment because I couldn’t think of anything to say.  I’m a little worried about it actually, speechlessness doesn’t look good on me. 

Cross my heart, I could not think of one single obstacle that I face as Little Dude’s mother other than the fact that he’s recently decided to boycott all vegetables except tomatoes* and I harbor a secret fear that one day he’ll swell up into a giant tomato Wonka-style and I’ll have to scramble to find a juicing room before he blows.

I blew some sunshine around, about anything becoming an obstacle if you let it, because that’s exactly my approach and I don’t let myself think in terms of obstacles.  They are challenges that we accept until we triumph.  Tricky things turned into tiny victories.  Rah-rah-rah.

It wasn’t until I was home later that night that I had a very deep and profound thought.  I do have an obstacle to face, but this particular road block is mine and mine alone.  

It has nothing to do with being Little Dude’s Mom and everything to do with my Irish Catholic upbringing.  I have lost a lot of my religion since the birth of my son.  Not my faith, mind you.  Just my religion.

There is no simple reason for this and perhaps it’s been long in coming, but there is one main reason that I am not teaching my child the same things I learned in childhood.  That reason is a man.  A man called Bartimaeus, the blind beggar that Jesus healed on the road to Jericho. 


Ok, ok, ok….settle down.


Don’t worry. I am not about to turn this fluffy, little blog post into a whole big thing.  I’m not going to debate the merits of organized religion, nor disparage it.  Ain’t nobody got time for that.  Just bear with me for a moment.


As an adult, I understand the concept of a parable.  As a writer, I’ve used them to illustrate a point.  As a child, I believed that Bible story with all of my heart.   Hook, line and sinker I bought the whole enchilada.  By the time I was Gabriel’s age I’d heard that story so many time I could see it in my head like a movie.  It went like this:


The Road to Jericho, 5 BC


A benevolent, be-sandled Jesus spots Bartimus - arms open wide in supplication begging for alms, under a blazing Middle Eastern Sun.  Jesus passes his miracle bestowing hands over the milky, useless eyes of poor, wreched Bartimus and the white dissipates.  Bartimus gasps with delight and gazes with wonderstruck, tear-glistened eyes that slowly come into focus.  He openly weeps and praises the man, the Father and the miracle as he drinks in the sight of ancient wonders in a world he’d been denied since birth.  


I loved that story.  It helped me believe in miracles, and magic, and hope.


And now.....it's completely different.


I used to shudder when I thought of my Son hearing that story.  I dreaded him hearing of that miracle and wondering:  'Hey! What about me?'   If you did not not recognize that tale as a metaphor; and happen to be blind, it would only be natural to feel some resentment for the luck of Bartimus.


I feared that story had the potential to be a pivotal moment for him, like it was for me…but with the opposite lesson learned.  He could lose faith in the whole concept of miracles, lose belief in a higher power or even worse keep the belief but feel that somehow he deserved punishment before he’d even had a chance to have a coherent thought.  


Yikes!  Yeah, I over thought it.  Bigtime.  But I realized a lot of things while I was obsessing about the fate of one blind beggar from Milena ago, the most significant being:  I can't protect him from that story, but I can teach him that it is just a story.  A fairy tale.  Like Cinderella.


One day he will hear that story.  He’ll hear other stories of miraculous healing. He’ll hear about documented cases of people with different eye problems who had experienced a miracle of medical technological advances: successful sight restoring surgeries.  He’ll hear about the micro-eye that could have given him a completely different life if it had only been invented a few years earlier. He might feel bad - like he was unworthy of a miracle.


Maybe…if his Mother wasn’t prepared for that eventuality and a confidently, crazed optimist who believes that individual perception is everything in life.


I believe in so many things; God, and dinosaurs and physics and true love and Angels and the NY Yankees (though that’s getting increasingly difficult).  I believe that things happen for reasons we don’t need to understand. I believe that my Mother watches over my son’s tiny footsteps because I believe that the soul never dies.  I believe that sometimes, as painful as it is, the answer to some prayers is no.  I firmly believe that it all boils down to love and putting more good into this world than bad.  I believe that this life is but one step on a journey that is far beyond the ability of our mortal minds to comprehend, and these mortal minds have struggled to make sense of the fantastic since the dust from the Big Bang settled.


I’ve reached a place where Faith in something greater than this moment and a lifelong love of Science have given birth to a belief system that really works for me. It  comforts me, gives me the strength to carry on.  It grants me the ability to see the world the way I do - to view the obstacles anything more than another bump in the road.


These are the things I teach my son and one day he will be able to rationalize his own system of beliefs to keep him strong in his darkest hours.


I believe that I can give him a strong enough foundation of faith to face the question, “Why did this have to happen to me?” And answer it with, “This is the way it’s supposed to be.” because he believes in things much bigger than himself.  


Just not Bartimus.  


* Knowledge is knowing that a Tomato is a fruit. Wisdom is not putting it on a fruit salad.  I learn the most wonderful things from Someecards.

Snarky Things I Never Said.

Little Dude and I were checking out of the grocery store yesterday when a young girl stopped to compliment him.  

“You have beautiful eyes” she said.

I almost dropped my jar of pickles on the floor.  I had to look at her real quick to make sure she wasn’t blind, too. 

Gabriel’s eyes are many things, but beautiful is not one of them.  I’m his Mother and I love him  with all of my heart, that being said: The kids eyes are completely messed up.  

The right one still needs surgery.  It’s too small, giving his eye socket a slightly sunken in appearance.  If you look closely you’ll see that the pupil is huge, white and glows, like a cat’s, in certain light. He has other white spots in the iris and that eye looks completely different than the right one which is a plastic lens that covers a hot, zombie mess.

Beautiful?  Really??

I don’t know what in the world came over me, but I was sorely tempted to encourage my sweet baby to take out his lens and hand it to her. 

No!!  Of course, I didn’t. 

I’m not in the habit of traumatizing teenagers.  Not yet anyway.  I said thank you, wished her a good day and tried to discretely sniff her for a tell-tale whiff of daytime drinking.

But then walking out of the store I noticed something.  Gabriel’s left eye does look really good these days.  It took a little more than a year but the prosthetic has settled into his face.  It no longer protrudes and looks like an obvious forgery the way it did in the months after surgery.

During that time I had to struggle, every time I left the house with my kid, not to bite someone’s head off for being an insensitive moron or - as we so eloquently say in New Jersey, a total douche bag.   

The following are some examples of things I didn’t say;

Douche Bag:  Is that a glass eye?

Me:  Nope, plastic.

Douche Bag:  Did he have surgery?

Me:  Nope, he gets it from me.  I’m a quarter plastic on my Mother’s side.

Douche Bag: Is he blind?

Me: Nope, being punished.  Not allowed to see today. 

Douche Bag: Can he see out of it?

Me: Yep.  It’s made of magical, future plastic. From the moon.

Douche Bag: What happened to him?

Me: He got deep into gambling a few years back.. owed money to the wrong people. I really can’t get into it. You should probably forget you ever saw us here.

Douche Bag: Is he just like a regular kid?

Me:  He’s actually a robot. 

                                                                      

I could go on and on… but you get the point.  You may have noticed that the questions are pretty much innocuous but still kind of nervy coming from perfect strangers.  Over and over and over again. I wanted to give then replies even more scathing than the ones I’ve mentioned but really…what would have been the point?  I did rather rudely excuse myself from some questions by walking away without a word.  

Those noesy people had no idea, but I was completely stressed out at that time. Gabriel refused to keep his lens in at night.  He would take it out and try to hide the fact that he did by hiding it.  He would cry when it had to go back in and I was still a nervous wreck putting it in.  I was punishing him by taking away his entertainment privileges, but that also punished me by leaving him unentertained and we were both exhausted from our nightly battle.  It was a dark time, my friends.  

When Gabriel and I were out all I wanted to do was forget about that stupid lens. Be out in the sunshine with my boy.  Grope some fruit in the Supermarket.  Sniff some scented candles.  Swim in the pool.  I never signed up to give a lecture on the complications of ROP, I just wanted to hang out with my boy.  I resented those people for breaking the mirage of normality I was desperately trying to shimmer in.   They pissed me of, and I got through it by making up snarky comments that I didn’t say and mentally assigning them adorable New Jersian nicknames.

I'm not worried about people bothering Gabriel when he's older like they bothered me last year.  He seems to be developing both an excellent, quick sense of humor and an impressive vocabulary.  Armed with these weapons, he will go out into the world a quick-witted, sarcastic warrior, more than capable of keeping a prying stranger in check …not a blind guy who feels weird because someone asks him if his eyes pop out.

Twisting Myself Inside Out in Real Time

 Today I had to twist myself inside-out to make it through.  That was one of my Paternal Grandmother’s favorite expressions.  She used it to describe the feeling you get when you have to do something that you really don’t want to do and sadly, that’s how I felt about getting out of bed today.  

 

I was tired before I even got up and my first cohesive thought was of my own Mother. It was a very long week, the one that just passed.  Work completely wiped me out, two of my closest friends are suffering and other than support, I can’t help them.  I recently lost something incredibly valuable to me and I’m still holding onto the hope of find it again because it’s absolutely irreplaceable. As if that wasn’t enough I’m allergic to the perfume set I bought myself as a present for another year of keeping my kid alive.  Grumble-grumble-grumble.

I know, I know….it’s Mother’s Day.  Rah-rah-rah!!  

No.  

No one woman cheerleading squad today, just a solitary, tired parent.  I actually kind of feel like a Dementor may have eaten my Pom-poms.  This morning I didn’t know if I’d have the strength to go on.  

Pffttt… Of course I did.  And did you notice something?

Not one, item in my litany of complaints, has anything even remotely to do with having a blind child.  Little Dude was the blossoming rose in the thorn bed of my day.   Life goes on, even after you have a disabled kid.  And sometimes it kind of sucks anyway, for completely unrelated reasons.  I'm writing this depressing post today, because I can't always be as upbeat as I usually am.  No one could be. I aim to encourage and support but never mislead.

I give myself days like today, days that I let myself feel what I'm feeling.  I admit that it's not a Supermom kind of a day and embrace it. This just happens to be one of them.  But here's the thing... part of what I'm feeling, no matter what lies at the heart of the matter is that my baby is blind and I can never fix it.  It's a monster of a feeling and it rears it's ugly head when I don't have enough optimism to wack-a-mole it away.   That monster is a jerk.  I call him Harold.

One day.  Just one day.

Tomorrow I have to wake up happy and strong again, because Harold feeds on fear and weakness, if I allow him to he would grow strong on my negative emotions and take over.  Not on my watch.  Tomorrow I'll wake up ready to chase the monster away, but I suspect I'll never be able to completely banish him.  He'll be waiting for bad days, for heartbreak, for sadness...any excuse to launch an attack.  I will fight this fight untill the end of my days.  It is my cross to bear.  I can do something though, I can keep my battle with him private. My son has no part in this inner war.

Or maybe, unwittingly, he does.  This morning Gabriel was my Cheerleader.  Funny how that works sometimes.

He wished me a Happy Mother’s Day (137 times), gave me snuggles, love and a beautiful, glittery handprint flower pot that he made in school but had no part in actually making other than donating the shape of his hand.  I'm always surprised by how fast he can twist me right-side-in again.

I had a surprise for him, too: his very first movie in the theater.  

I love the movies and remember my first like I went to see it last night.  It was 'Annie', and I was absolutely enthralled.  I WAS Annie, during those 127 minutes.  I clearly remember my spunky redheaded self scurrying up that ladder at the end to escape the evil Hannigans.  I was a total badass.   

I’ve seen 'Annie' dozens of times, but it was never that same as that first night.  There is something about being in a darkened theater with your imagination running wild, isn’t there?

I wanted Little Dude’s first movie to the same wonderful experience…but no movie ever seemed to fit the bill, so we settled.

We went to see Disney’s ‘Bears’ with our friends and it went a little better than I expected. My biggest concern was that it would be too loud for his Spidey ears, and it was but not painfully so.  I thought that a Documentary style movie would be a good choice, but the narration heavily depended on being able to see the bear’s antics, so as soon as the food was done, so was he - but he made it till about the halfway mark.  (I cleverly bought us the Mega sized popcorn.)

I found myself having to explain a lot to him and he started getting fidgety.  The narrator said something like, “And now the Bears will look for hidden treasure” and Gabriel said, “Are there going to be Pirates now??” I said no and he was crushed.  A few moments later he asked me if the movie was over and I said no but it could be for us if he was ready.  He was.  So were the people around us who’d been listing to my backseat storytelling.

We left the movie and I asked him what he thought.

Me:  So, Little Dude.  Your first movie.  What did you think?

Gabriel:  I love movie popcorn.

Me:  Yeah, me too.  But what about the movie?

Gabriel:  Well…..

Me: Was it too loud?

Gabriel:  It was loud but I didn’t have to put my head down and cover my ears. *

Me: So why did you want to leave?

Gabriel:  Well, Mom…I hate to break it to you, but I just don’t like bears that much.

He’s right.  ‘Bears’ was no ‘Annie’.   I dropped the ball on that one.  Epic Fail.  And on Mother’s Day, no less.  

Well, you guys know me by now.  I already have a plan of attack for the next time.  I’m going to get a copy of the movie that we’re going to go see (through perfectly legal means, I assure you) and watch it with him at home first.  That way I can answer all his questions and pause it to describe things without pissing off a theater full of strangers.  By the time we go see the movie he’ll understand what’s going on and hopefully not be just sitting there, bored and confused in the dark.  Like he was today.

Or maybe movies just aren’t going to be our thing.  Maybe we’ll be going to Death Metal concerts instead.    Maybe my blind guy will never care for film but there is a blind guy who reviews movies, did you know?

https://www.youtube.com/user/BlindFilmCritic

That’s a link to Tommy Edison’s Youtube page.  Aside from reviewing he also posts truly hilarious videos about life as a blind guy.  He might even be funnier than me.  Since I’m feeling more twisted than funny today I’m going to go catch up with him right now, and since you just sat through this relative bummer of a blog post, I suggest you do the same.

* I don’t know if it’s just my kid, but when Gabriel get’s scared he covers his ears the way sighted kids cover their ears.  Makes sense to me.