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.