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.