Living in the Dark

Gabriel is almost seven years old now. In most ways he’s a perfectly typical little boy.  

 

He’s inquisitive, talkative and at times astonishingly loud for such a small person.  He loves trains and cars and trucks – pretty much anything that has wheels, an engine and the ability to go, ‘VROOOM!’  He has a slew of friends, makes good grades in school and is learning Braille so fast, it makes me dizzy.  

He teaches himself the piano, builds Lego structures Frank Lloyd Wright would envy and has a memory that ANYONE would envy.

If you were hanging out with us at home right now, the first thing that would strike you is how ordinary he is.  You’d be impressed with his ability to maneuver around the house, and might even have the dubious honor of being pick-pocketed by his tiny, nimble fingers.  You’d have to watch out for your ankles as he zooms around inside on his Plasma Car (the Blind guy gets right of way).

Outside of the house, however, it’s a different story.

You have never really seen the world until you’ve seen it with the eyes of a Mother whose child can’t see.  Oh, man… it is terrifying out there, people.  Terrifying!

That pothole you automatically step over is a face-plant waiting to happen for the Little Dude.  That counter you lean your elbows on in the Grocery store is the exact same height at his forehead.  That shelf of glass jars is inconveniently low for you, but right at the level that he’ll use to steady himself if he stumbles. That little puppy with the puffy tail you think is adorable, is a furry, ticking time bomb if my kid accidentally steps on it’s tail.  And that’s just a 5 minute trip to the supermarket.  

Being the primary care giver of a blind child takes constant vigilance, catlike reflexes and excellent verbal skills.  It is not for the faint of heart.  

Yet, it is a task made much easier when you compare it to actually being blind.

Since Gabriel never had any amount of useful vision, he has no freaking clue. Seriously.  None whatsoever.  

Oh, now.  Don’t get your knickers in a twist because I called my kid clueless.  Have an example instead:

My son has no idea what a tree looks like. He has felt the bark of trees, hugged them (we’re environmentalists) checked out leaves and twigs and branches of different kinds; fallen, low hung, Evergreen  and Spring kissed. He has smelled them and heard the wind rustling leaves high above his head while holding some in his hands but think about it for a minute: put all of that together, and what have you got?  

Damn if I know.

I have no idea what it’s like not to see.  Not even when I shut my eyes.  I can’t relate.  I can’t really relate to my own son.  I have no idea how he thinks, because in a way, most of the world is conceptual for him.

Things that are fixtures in your life; your Mother’s smile, the whirls in your fingerprints, the way the Sun looks the moment it slips below the horizon line and all the types of trees you’ve ever seen….those are all abstracts to my son.  He is both literally and figuratively living in the dark.

Don’t grab your tiny violin just yet.

One of Gabriel’s best friends at school is a little girl who has some serious health problems.  She missed almost a whole year of school, had to repeat the first grade and is significantly overweight due to her illness.  This poor little thing broke my heart the first week of school because she cried and clung to her Mother every morning, the other children were not nice to her and she hated school.

You see it coming right?

My little dude cannot hear someone in distress without trying to comfort them. Cough? He’ll ask if you’re ok. Sneeze? He’ll bless you and suggest a vitamin. Sound tired? He’ll notice and comment on it. Sound sad? He’ll give you a hug.  He hears nuances in the voices of people he knows well, he’s by far the most empathic child of his age I’ve ever known.

The first week of school, the crying of his yet to be friend freaked him out.  He was already overwhelmed starting a new school, but he told me every day about the ‘loud girl’.  Then on Monday of his second week we had the following conversation:

Me: How was school today?

G:  Good

Me: How was that Loud Girl?

G:  Well she was crying again but I told her she didn’t have to be sad, that school was ok and that she has beautiful hair.  Then she laughed. I never heard her laugh before. She has the nicest laugh and I told her she should laugh more. So she did. Now we’re friends. I might marry her, not sure yet.

Me: What a good friend you are, what’s her name?

G; I have no clue. Can I have a drink?

That Monday was the last day that Jadianne (formerly known as Loud Girl) cried in the morning when her Mother dropped her off.  The moderate pride I felt in my child’s act of kindness doubled when I heard the story from his teacher:

My son took this little girl, who had been ostracized by the other kids, by the hand and told her it was going to be ok.  He, alone, in a class of 28 understood her pain, and offered her the things she needed more than anything else in the world: comfort, acceptance and kindness.  

 It is not in the nature of children so young to be so sympathetic, but when I asked him what made him reach out to her, he simply replied, ‘She was sad.'  How many of us would have done the same?  How many would have reached out to the Loud, crying girl who's beauty is far from conventional? Who is really living in the dark?

Gabriel touched Jadianne's life and they remain close friends. He still considers marrying her from time to time.  She looks out for him now, every day, the way he once looked out for her and he tells he she's beautiful. They walk together and she guides him over the potholes that his cane misses.  She helps him avoid bumping into other kids and if she were to walk with him to the store I’m sure she’d warn him away from stepping on the puppy’s puffy tail.  Because that’s what friends do.

And when you have really good friends, how terrifying can the world really be?

The Great White Cane

 It’s a rainy morning and the Little Dude and I are meandering to his first grade classroom.  He’s got his Cars backpack on, cane in one hand and my hand in the other.  I’ve got 20 lbs. of Perkins Brailler dangling on my shoulder and we’re talking about why there are no elephants in Aruba.  We come to a step up, I squeeze his hand once (two is for a step down) and alert him to the change in terrain.  He’s become a ninja with his cane, and doesn’t need me to tell him but old habits die hard. 

I made some rather controversial decisions when Gabriel was a toddler.  One of them was to go against most of what my research dictated and the advice of my most trusted advocate at the Foundation of Aruban Visual Impairments (FAVI) when I taught him to echolocate instead of having him learn to walk with the teeny-tiny white cane FAVI provided him.

That choice was made with my heart and my head fought me every step of the way...oh, how I doubted myself!  But by then, I knew my child.  He hated that cane with a burning passion. It was the littlest stick you could get but it was still too big for him. It threw off his balance and he would either drag it behind him or manage to trip himself.  It was a disaster. Sometimes I think that his vocabulary is as impressive as it is just because he needed to express how much he loathed that first stick.

 I already knew how stubborn my child can be, and how easily he becomes negatively conditioned.  I felt like a complete degenerate, slacker Mom at FAVI assessments where the only area Gabriel was found to be lacking was orienting himself with his cane (on several of these occasions I had actually forgotten to bring the bloody thing) but no one could really admonish me.  They were too busy being impressed with how the little dude, arms outstretched, occasionally stopping to clap, could navigate his way around a room.

As soon as he learned to walk I noticed that he would occasionally stop, yell and then continue on.  I saw this mostly in the house but occasionally outside near a building.  I realized that my two year old was echo locating like a bat.  I was so impressed.  A little research, an episode of National Geographic’s Superhumans featuring an echo locating teenager and we were off like bats at dusk.

I taught him to clap instead of yelling, and took him to all sorts of places to hear how claps sounded.  We clapped in small spaces, big spaces and every space in between.  We clapped in high roofed churches and low ceilinged basements.  We clapped at trees, people, brick walls and kiosks in the Mall.  I never really had to teach him to do this; I just had to tell him where he was and what he was hearing.

One flaw in the echolocation: Peeee-ople.  In places with lots of background noise and moving people it doesn’t work.  His little clap is swallowed by the ambient sounds.  I told him that school would be like that and he’d have to use his cane.  He reluctantly agreed.

As it got closer to the time he was starting school, we started having cane walks.  There was always some reward or incentive at the end.  Sometimes a trip to the store for an iced tea or a candy bar, sometimes we’d go check out cool stuff in the neighborhood that we usually didn’t have time to explore.  I’d correct him as he was dragging the stick behind him or trying to ride it like a stick horse. A friend had the brilliant idea to make up a game we’d play games with other kids, blindfolded and walking with the stick through an obstacle course.  He liked winning that game.

By the time school started, his hatred had faded to acceptance peppered with just a bit of dislike.  He knew he was required to take it to school with him and was ready. He no longer wanted to bake ‘that dreadful thing’ in the oven…mostly.

He dragged it behind him through most of Kindergarten and it stayed in my suitcase the whole 3.5 months we stayed in Cali. But then something amazing happened.  We came back from Cali, went for a cane walk and my boy was walking with his stick. In front of him!  That’s the most useful way to do it!!  I was so proud (and relieved that my decision didn’t come back to bite me in the ass).

 In my fanciful way of thinking, it seemed to me that the lapse in stick time allowed the whole concept to ferment in his brain. Now, he uses the stick when he’s in unfamiliar places, places with a lot of people (watch your ankles!) and out on the streets.  In places he knows, he seems to keep a blue print of the layout in his head.  He gets disoriented sometimes but he will clap, find a wall and follow it to a familiar piece of furniture or door way to get his bearings back.  Batman’s got nothing on this kid.

 When he started first grade he was presented with a deluxe model white cane with a rolling tip. It was love at first sight.  He doesn’t need to hold my hand anymore, but I don’t yet encourage him to let go.  Batman or not, he’s still just my little boy and I love holding his hand.

Belated Mission Summary (The verbose can’t stick to a simple statement)

So far you’ve followed the story of Gabriel’s premature birth, you went to Cali with us for his eye transplant, and you’ve experienced, second hand, some of the pratfalls that I’ve dealt with raising a blind child.

 While I adore every single reader (yes, especially you!) the members of my target audience are the parents of blind children.  In a perfect would, they would find my blog within twenty minute or so of diagnosis.  They’d go directly from the eye specialists office with the newly placed weight of the world on their shoulders, to an internet capable device, Google ‘my kid is blind!’, find our story and have a good laugh about poop.  This laugh will initially surprise them, because for a moment they thought maybe they’d never laugh again.  Then they might feel terrible, because how could they be laughing on the breast of such tragic news.  Then maybe… they’ll think about life going on. Because it does.

I try to design my stories to comfort, to amuse and to inspire because I have been where these parents are and it is a dark place, filled with fear and despair.   The stages of grief come, en mass, and you literally don’t know what to feel.  The moment you find out that your kid has a serious disability you experience temporary insanity.  A good Lawyer could get you out of most noncapital offenses at this time…because I’m serious.  You become a little deranged.

Crazy thoughts race through your brain, half formed waves of icy terror that cause you to pull your hair and clench your teeth:

“Oh, the Humanity!!  My kid is fucked up!! My baby, why, oh why??  How?? What can I do?? What am I going to do?? OMG!!  SHOES!!!   How is he ever going to find his shoes?????”

These lovely musings are instantly chased by white hot licks of guilt and shame that pierce your heart:

“Did I do something to cause this? Did I mess my stuff up that time I tried those funky mushrooms in college??  Am I being punished because I was a terrible person in a past life?  How could this happen to MY kid?? My perfect baby isn’t perfect!!  And how the hell will he ever find his shoes?!?”

 A glance at your sleeping baby, unaware (as of yet) of the long road that waits to be traversed in the dark, can bring you to your knees with sorrow.  But then you have to get right back up again because even though your whole world has just fallen apart you still have a child to care for.

That first day is the worst because you are clueless.  Unless you’ve know a blind person (and they are rare as diamonds) you only know what you’ve heard and assumed about sightless life.  You read ‘What to Expect when you’re Expecting’ but you didn’t expect this and now you have no idea what to expect at all. 

That’s why I started this blog.  To help you see, through my eyes, what’s to come.

I’ve told you how I dealt with it.  I educated myself, I found him role models, I created a safe home for him filled with wonders he didn’t need to see.  I encouraged, cajoled and teased him to blindly take his first steps, walk up the jungle gym – counting the stairs.  I read to him, sang to him and loved him.  I walked the fine line between catering to him and teaching to live in a world that doesn’t cater to him at all. I tell him honestly that he’s really fucked up. 

Ok, calm down!  I kid, I kid…

I don’t say THAT…but he knows his eyes are broken. He knows he’s different.  He knows however well he does on the MCATS; he’s not getting into Med school.  He knows I think he’s very brave, but not special because of his disability.  He’s special because of the facets of his personality, his spirit, his joy for life, his budding comic timing and a thousand other reasons that have nothing at all to do with his eyes.

I told his tale the way I did, as I thought of things that happened in the past with one main goal in mind.  I wanted to say it’s going to be ok. 

The new parents might not believe me at first.  The place they are in is as dark as the smoke filled hallway in a burning house and twice as disorienting.  My simple ‘it’s going to be ok’ might reach them but it cannot penetrate the darkness.   Only a little time can do that, time for the smoke to dissipate and the air to clear.  They won’t really listen to me until they learn to believe again.  Made their peace.  My faith in destiny got me to a peaceful place rather quickly, but others take longer.  Gabriel’s Father didn’t get to the peaceful place until Gabriel took him there with his ability to shine in the dark.

Though your child won’t see, you will. You’ll see your child grow.  You’ll be amazed, charmed and proud.  As proud as every parent is watching their child’s first steps, you’ll be even prouder because you know as much as it was your baby walking; it was you that got him to that point. 

In the beginning the uncertainty is all consuming.  I know that well. I also know that it fades.  It doesn’t disappear…it never will.  You will carry some of that first day with you, for the rest of your life. It is your burden. Yours alone.  But more than a burden, it is a gift.  A gift you got because you are strong enough.  You will raise that burden high above your child, so it doesn’t touch them. Because they have enough.

And one day, so gradually..so slowly that you don’t even notice it, you realize that burden is not so burdensome anymore.  It’s a small thing now, only heavy enough to remind you how much better things are than you thought they’d be.   It’s not even a burden anymore, it’s become a badge. A badge of honor, because you took that first day, when your whole world was on fire and you turned it around.  Like a phoenix, you were reborn as the parent of a special needs child.

Like me.

An aside for my cherished fans (still you!): 

Gabriel's glasses broke.  He got upset.  I refused to replace them. He got more upset.  I played Mah-num-a-num on my phone.  We sang. We snuggled. We ate a cookie. Sang again. It was over.  

I worried obsessively for almost two months. Mah-num-a-num.