Recovery from a Crushing Blow

Well, with a title like that, you’re hardly expecting a happy post.  That works well, because you aren’t getting one.  Gabriel had a Doctor’s appointment on July 4^th.  It was his 87^th Eye Doctor appointment.  These appointments have stretched out over 3 continents, involved 15 various specialists and easily given me 2,000 sleepless nights.  Number 87, proved to be one of the more memorable because I was blindsided for the first time since his original diagnosis.  It was when they said that his other eye has to go.  It isn’t growing properly. He needs another transplant.  I never saw it coming.

After many days of meditation and nights of tear stains on my wine glass, I’ve released my bitterness and untangled my thoughts enough to write coherently about these recent developments in Gabriel’s unending eye saga…maybe.   Since the original title of this post was: “I’m about to Burn Shit Down”, I think I’ve made remarkable progress toward acceptance, however, I had some trouble letting go of my anger.  

At first I couldn’t figure out who I was angry with:  The Pediatrician who told me (repeatedly) when he was an infant that his eyes were fine?  No.  That’s ancient history (though that Bitch better hope she never runs into me in a dark parking lot).  God?  No.  I’ve already established that my child is my miracle, and I’m not one to look a gift horse in the mouth (seems unhygienic anyway).   

 Then I realized.  I was angry at Hope.  That tiny, incandescent, winged champion of Pandora who lives inside all of us; feeding our dreams and casting light on our darkest days, had abandoned me.  When they take my baby’s other eye, that’s it.  End game.  No more hope for another miracle.  No more hope for a sight restoring advance in technology.  No more hope that one day my son will see the love that shines from my eyes when I look into his – just the knowledge that soon I won’t have anything to look into but painted, plastic prosthesis.  Hope abandoned me and left an empty place for despair to creep inside.  

Hope is fragile, delicate.  Despair is more like a murky, black ooze.  Once released, it goes through rapid Mitosis – dividing and spreading - tainting everything with long, reaching tendrils of hopelessness. Casting shadows, it chases the dreams away.  It leaves no room for anything else to grow because it’s as heavy as antimatter, darker than a black hole.  

I wish I could say that once I realized that I’d been attacked by despair, I shook it off with my usual vigor and vim, but –alas, I didn’t.  I wallowed in it.  Reveled in it.  Six years of putting my brave face on, of putting my Gabriel’s needs before my own, of pretending that everything was fine – gone – just like that.  

The moment the Doctor told me that Gabriel’s other eye had to go, I developed a tic in my right eye.  Walking to the car my stomach was in a knot.  By the time we got home, I was broken.  Shattered.  I couldn’t pretend anymore.  I grabbed my kid, slapped some store bought chicken nuggets in the oven, put every episode of Super Why on a memory stick and took to the bed with my child.  

For a few days (okay… okay.. 3 weeks) I was majorly depressed Mommy.  We spent days doing nothing.  Literally, doing nothing.  It was bad.

In my defense, I’ll tell you that Gabriel’s eyes were not the only factor to my depression, merely the straw that broke my back. Allow me to digress for a moment:

My first blog post said, “I sat on the plane headed back from Cali, Columbia feeling, for the first time in years, that the worst was behind us.”  Apparently, the Universe took them to be fightin’ words and since I tapped them out in February, has gloried in making me eat them.

April took two men I loved from me.  Both to illness; one resulting in death, the other in the crumbling of a relationship I thought would last me to the end of my days and a family that was not my own, but loved like they were. These losses left me with no nuclear family, save my wonderful child.  Even before I learned about Gabriel's eye I'd been feeling scared and tired and very much alone. After, I felt more than a little dead inside.

I should probably be ashamed to admit how much I depended on my little son to get me through those dark days but I’m not.  He’s never seen my face, but he knows me better than anyone in the world.  He can tell by the sound of my voice if I’m tired or happy or sad.  He knows when I need a hug and when I need to hear his tiny voice say, “Mommy, I love you”.  He’s so in tune with the people he loves, and he gives his love away freely, expecting nothing in return for it.  

It was that love; that vibrant, unselfish, untamed love that chased my despair away.  In another moment of epiphany, I realized that a child with so much love in his heart has nothing to fear from the darkness.  And while I nursed a secret hope that one day science would fix his broken eye, he never did – because I never gave it to him.  He suffered no disappointment, just mild anxiety knowing that another surgical procedure looms in his future.  I was able to get it together – not for me, but for him - because this is his childhood.  It’s so fleeting, over so fast.  Every day matters.  I got up out of bed.

I still haven’t completely healed, but my wounds have been mended enough that I’m able to carry on.  My sense of humor has returned enough for me to dream up interesting prosthetics we can have made, now that he’ll have no blue eye to match it to.  I was imagining the interesting combo’s he could have: Liz Taylor purple, catlike vertical pupils, maybe even black light responsive ones for college.  Hope returned and I remembered that I have no idea what kind of technological advances the future holds.  I started writing again, probably not my usual caliber – but hey, progress is progress, right?  Most importantly, I recognized that my son is doing incredibly well.  Throughout these months of turmoil, he remains bright, well-adjusted and perfectly happy. 

I won’t apologize for the lapse in posts – you can trust me when I tell you that you didn’t want to hear anything I had to say for a while - but I will ask you to stay tuned for more exciting adventures from us.  This year will bring another surgery, but it also brings first grade, new friends, swimming lessons - a childhood – colored, but not stained, by darkness.

Zombie Boy

I started a new job on Monday. It was the first time in my little boy’s life that I wasn’t there when he woke up. Gabriel was fine. I was fine. After 2,050 days of constant companionship, the apron strings are so frayed, they basically cut themselves.

I’m doing maintenance work in a cemetery. It’s the first time in my solidly middle class, Catholic schooled, pampered, pretty princess existence that I’ve worked more with my hands than my head. So far I find it liberating. I’m not afraid of the shells of former people that lie beneath the ground. I believe in the soul. I believe that it goes somewhere far better when these Earth bound bodies of ours fail, however at the first sniff of Zombies I’ll be outta there so fast people will wonder when Usain Bolt came to town.

My mind is free to wander as my hands care for the graveyard grounds. As you probably imagine I spend a lot of time thinking about Gabriel. And Zombies. When humankind has created the reanimating vaccine or street drug or power drink or reaches the level of atmospheric radiation that starts the invasion, my son will need extra protection.

No, not because he can’t see – that will be an asset. He’ll hear and smell the Walkers coming before anyone else in our motley group of survivors. He’ll blindly lead us to water, hear huntable animals tip-toeing through the brush and regale us with his repertoire of songs and knock-knock jokes. I’ll arm him with a rapier and have him spin in circles in the unlucky event that we get swarmed. He doesn’t get dizzy and won’t be visually scarred by the pile of twitching corpses at his feet.

He’ll need the extra protection from other survivors. He shambles. He runs like a penguin. His gait is cautious and slow and his hands are usually outstretched. Compound this with the fact that under his prosthetic lens his eye is a vivid red tangle of capillaries in a mass of eye tissue that used to belong to someone else. He could easily be mistaken for a minimuncher. It will take constant vigilance on my part and an, I’M NOT A ZOMBIE, T-shirt to keep him safe.

Early on, in this blog, I mentioned that we were on a plane on the way back from Cali, Columbia. We went there last year so Gabriel could have an eye transplant. I agonized over this decision. The eye they took could still see a little light. It was also plagued with Glaucoma and not growing properly. While there, his brilliant doctor discovered that it was also drying out and causing him increasing discomfort every day. He never complained. He’s my hero.

Two days, post-op, we were in the Mall. It was one of the few places we could walk to from the hotel and we happily whiled away our days sipping oatmeal drink, procured from the mall supermarket, learning to affect flawless British accents and singing made-up songs about farting (in flawless British accents). He couldn’t yet wear his lens, only a clear conformer that gave his Zombie eye and extra special glassy sheen.
During one memorable trip to the supermarket I was holding him, he was resting his head on my shoulder and we were trying make the impossible choice between Movie Theatre style or Kettle corn, when I heard an elderly voice say, “Oh, lindo! (Oh, cuteness!)” An older woman had snuck up behind us and was looking at the child in my arms.

Gabriel raised his head and turned toward the sound of her voice. Sloooowly. I doubt it was intentional, but it took several heartbeats for him to completely turn his head, affording her the full effect of his mismatched eyes. She clutched her oversized purse to her chest, made an ancient Waunan Indian hand gesture for warding off evil and scuttled backward faster than I would have expected from a woman her age. She whispered, ‘Dios Madre’ and hedged her way out of the snack aisle.

Maybe it was stress, maybe it was the effects of Columbia’s amazing coffee, but I just started laughing. Loudly and inappropriately. Gasping, snorting laughter bounced off the junk food and was soon joined by the deep belly laugh of my boy. I noticed the supermarket staff eying us warily and we abandoned our popcorn mission completely, chuckled our way out of the store. I noticed the woman who’d cause my mirth staring in abject horror at us on the way out. The expression on her face was priceless, I tried (and failed) to describe it to Gabriel when I was capable of speech much later.
Yeah, I told him what happened. I told him what his eye looks like and that there are some who will only judge you by the things you show on the surface. I told him that those people are worthless and shallow and usually quite simple. While speaking to him I had another epiphany. My son will never be one of those people. He has no choice in life but to judge individuals on the worth of their souls alone. It’s an amazing opportunity, maybe even a blessing in disguise.

The Precious

Sometimes I get a little angry.   Not at the unjustness of my child’s sightless fate, not at God nor the Devil, not at the universe.  I get a little angry at random strangers.

Ok, ok… not just a little angry, more like positively demented with boiling, pulsing rage that roars out of the darkest corners of my limbic system and consumes me from within.  My dimples morph into a twisted mockery of glee that would have the Joker running for his mama.  Every curse word I’ve ever heard burns the inside of my lips and I’m filled with the strength of 20 steroid rabid baseball players.  I tremble, a physical sign of the inner battle that is being waged under my scary smile.

My ID’s voice becomes Gollum’s while the tiny part of my superego that has managed to remain calm is Smeagol.  Here are 2 examples of those battles:

#1.  In the Supermarket when Gabriel was about 1 year old:

Gollum:    Wicked!  Stupid, strange woman is crying because the Precious is blind!  We don’t knows her! We don't likes her!! We hates it, Precious!

Smeagol:  No, no, Precious.  It doesn’t know what it’s doing, it doesn’t know.

Gollum:    We hits it.  We hits it and gives it a reason to cry.

Smeagol:  No! No, Precious!  We can’t hits it. That’s assault, Precious!

We didn’t hits it. We really wanted to though.  I wish I could say that a stranger crying over his condition, in front of him, was an isolated incident, but to date, five (yes, five) people have done it.  Three Grandmotherly types, one Mother with a newborn and a teenage girl.   Seriously, Ladies?  Get a grip.

The first time it happened, I was floored.  Gabriel was still in his little carrier and a cute little, old lady was trying to catch his eye by smiling and waving.  Wearing a beatific smile and halo of silver curls, she was obviously not used to being ignored by stranger’s babies.  I’ll admit that her increasingly desperate exercise in futility was amusing to watch, but eventually I took pity on her and said, “He can’t see you.”

Niagara Falls, baby.  It was horrendous.  I was trapped in the checkout line and couldn’t escape Meemaw, the sobbing maniac.  She starts blubbering about how sad it is, and how she doesn’t understand God’s plan.  Gabriel was busy trying to aspirate his Gerber rattle phone, completely unaware of the heartstrings he was pulling.  I, on the other hand, was thanking my lucky stars that my boy was too small to understand what was happening.  I had a funny feeling that it would happen again, so I needed to think up something clever to say in the future.

That future came not so long ago, in another supermarket.  It was the teenage girl blubbering about how sad it was for the little blind boy this time and Gabriel grabbed my hand and said, “Mommy, why is that lady sad?”  I was ready.  3 years of careful planning and extensive research had made my answer a no brainer.  I said, “Because she’s stupid.”

I’m not going to let Gabriel think for one second that it’s even remotely acceptable for people to cry for him.  He has many blessings and many gifts.  He has a gaggle of people who adore him. He has an awesome life.  He just can’t see it.  That’s all.

#2.  In the park, in New Jersey, last Spring:

Gollum:   What’s it doing!  Stupid, fat parent!  He ruins it! Taking the little boy away, when he was playing so nice with the Precious!

Smeagol:  He’s afraid the Precious will get hurt.  He’s not knowing what things like this do to the Precious.

Gollum:   The Precious and the little boy are both getting upset.  We kills it. We kills it now.

Smeagol:  No, no, Precious!  We can’t kills it, we can’t!  We don’ts have the upper body strength to drag the body to the lake, Precious.

To this day, that incident is a source of contention for me.  I go over it in my mind sometimes and get angry all over again.  But this time the anger is at myself, because I stood by and let it happen.  I didn’t open my mouth.  I let that man drag his protesting child away, leaving my child alone on the playground, mystified and bummed by the abrupt departure of his new buddy.   I had options.  I could have tactfully explained that while Gabriel can’t see, his affliction is not contagious and does not prevent him from playing with other kids.  I could have suggested that he return to the important matters awaiting him on his Blackberry (like he was before he noticed his kid playing with mine) while I kept my eyes on both kids. I could have let Gollum take over, killed him and called in a few favors to help me clean up.

I did none of those things.  I did nothing.

Gabriel didn’t say anything about it right away.  I could see the nimble hamster in his head running in circles, though.  I knew it was coming.  I’m not proud of the following admission, but when he did ask me about it, I took the low road.   I thought up a lie and I thought it up quick.  I said I’d been watching his friends Daddy just before they left. I said he was on his phone and stood up really fast, like he had somewhere to be in a hurry.  I said he probably forgot to go to the bank.  Gabriel accepted this without question, because I almost never lie to him.

We went back to the park the next day and Gabriel made friends with two brothers.  The boys had awesome parents and we had a lovely chat while watching the boys play.  They asked respectful questions about the Precious, shared their cookies and we did not wants to hit them.

In summary, people can be awful, or they can be wonderful.  The pain that I’ve shared here is nothing compared to the pain of parents with kids who have serious developmental disabilities and are forced to deal with douchebags on a daily basis while caring for a child who may never be able to care for themselves.  Nothing compared to the parents of  those children are ill and have to deal with the well meaning but meaningless advice and saccharine sweet sympathy of strangers.  Nothing compared to the parents whose children live only in their memories.

My advice to any parent, or guardian, or friend of someone with a disability who experiences something similar is this:  If there is a graceful way to tell them they’re an ass, take it.  Defend your child, but kindly.  If there’s no diplomatic way to defuse the situation then screw it.  Say whatever you want to them.  Tell them all about themselves.  Tell them about their lack of compassion, about their stupid, unjustified fear and prejudice and dumbassedry.  Curse them and mock them and brag about how much of a better person you are then them.  Do all of this and more….in your head.  Do it passionately and do it fast and then get back to your kid.  Who really cares about that jerk anyway?

Suck it, Schlomo

The first book I ever read about raising a blind child now resides in a landfill somewhere.  I tried to set it on fire but it didn’t even have the decency to burn well.  The only incendiary fluid I had in the house was olive oil and I didn’t want to risk a massive grease fire during Gabriel’s naptime.

There might have been some great information in that book. I wouldn’t know, never made it past the introduction chapter.  The author (let’s call her Schlomo) decided to open her book (let’s call it ‘Piece of Crap with Yellow Cover’) with a story that I’ll summarize for you now:

Say that your life’s dream is to take a vacation to Paris.  You’ve scrimped and saved for years.  You have miniature models of the Eiffel Tower on the dashboard of your car, eat croissants by the bushel and wear scarves with wild abandon.  You’ve named your dog Napoleon and think that Gérard Depardieu is the best actor in the whole wide world.  Finally, you have managed to plan your vacation and are on the plane to Paris.  Your little Francophile heart is shuddering with happy anticipation as the plane touches down….in Amsterdam.

That’s the brilliant analogy Schlomo came up with for the way a parent feels when they have a child with a disability.  She went on to suggest that, while you feel crushing disappointment about reaching the wrong destination, you should stop for a moment and appreciate how nice it is in Amsterdam.  Holland, after all,  is lovely. They have windmills. And tulips. And wooden shoes.  And really tall, blonde people.  And legalized marijuana and prostitution.  And Gouda Cheese.  Schlomo presumes that you will suck it up, turn your frown upside down and happily stomp through the tulips in your clogs, smoking weed and windmill gazing with your new friend the giant flaxen-haired hooker.  Perhaps, at times, you’ll lament you fate and feel very sad because what you got wasn’t at all what you wanted,  but then you’ll remember that you haven’t even tried the cheese yet.

Naturally, Schlomo assumes you are a moron, incapable of calling your travel agent and pointing out their geographical confusion.  Maybe Schlomo doesn’t know that there’s a train that can take you from Holland to France in less than three hours.  More likely, Schlomo wrote her book based on information she’d garnered from other books as opposed to real life.

I can tell you right now that Schlomo does not have a blind kid at home.  She never stayed up late into the night imagining all the horrors that lurk in the unwavering darkness.  She never woke up in a cold sweat, stricken with the sudden, insane vision of her son, missing a step on the sidewalk and falling into incoming traffic.  She never cried, because of an amazing sunset her child couldn’t share.  She never laughed her ass off because her kid somehow became convinced that he was purple.  She’s never walked in my shoes.  If she had she would have realized that her analogy sucks.

Having a disabled child is nothing at all like getting screwed out of going to France. It’s a battle, in a war, where the enemies are unconquerable and surrounding you on every side.  These faceless foes come in many forms;  A school system that doesn’t support your child’s needs, friends who ditch you because they don’t know what to say, people who point and stare.  That’s not even mentioning the actual parenting. Mental exhaustion is an enemy of mine.  Gabriel asks me 1,572 questions every day and twice that many on Sunday.

Mommy, why are people’s butts different sizes?

Mommy, what would it sound like if people were made of metal?

Mommy, are you sure I’m not purple?

Mommy, what is the sky like?  Tell me everything you know about it.

Mommy, where’s that thing I like – the one I was playing with a week and a half ago.  It was a Tuesday.  I like that thing, where’s that thing?

Mommy, is this a power strip?  Can I play with it?

Mommy, really?  I’m not purple?

Mommy, who’s talking?  Is that a man or a woman?  A woman?  She sounds like a man.  Does she have a penis?

Sometimes, the machine gun rapidity of these questions leave me longing for a nice, quiet room somewhere.  An insane asylum, most likely.

I’m very lucky. The battles I wage is small compared to the ones some parents must fight.  My kid is only blind.  He has no other developmental problems.  I worked with a severely autistic child in my youth and it was the most challenging job I’ve ever had in my life. After our sessions, I would be completely wiped out and sad, feeling like I’d made no progress with him at all.  Our sessions were for three hours twice a week.  His parent’s sessions were every moment, of every day.  They cared for their son with grace and tenderness.  They never gave up on him, though he was very difficult to manage at times.

His mother broke down in front of me one day.  She and her husband had no other close family and she knew, one day, when she was too old to care for him, her son would have to be institutionalized.  She was fighting a battle she knew she’d never win.  The best she could do, was keep the enemies away, for as long as she could.  I’m fairly certain she would have hated Schlomo’s vacation snafu analogy as much as I do.

So, all those years ago, after I threw my mildly charred, copy of ‘Piece of Crap with Yellow Cover’ in the cover in the garbage,  I called my best friend.  I told her what I’d read.  Without missing a beat she said, “What a silly woman.  That story makes absolutely no sense at all.  It’s like comparing apples and Army Tanks.  Everyone knows that God gives the most special kids to the people he trusts the most.”

Over the years her simple words have comforted me time and time again.  I believe her, I was chosen by whatever divine force works in the universe.  When I doubt myself, I remember that God doesn’t.  My child is not a badly executed vacation.  He’s a blessing.  Suck that, Schlomo.

Some Simple Ways to Rasie a Happy Blind Child 5. Don't Go it Alone

For the longest time I had no friends in my life. I had friends – abstractly , in far distant lands, whom I thought of often and remembered fondly – but I hadn’t spoken to them, seen them or made any effort to be in contact with them, whatsoever. The last time anyone heard from me, my life plan was to marry an exotic, dark-eyed man and make my living chartering fishing trips, in the endless summer sun, of my new island home in the Caribbean. I asked everyone to update their passports and wait for destination wedding invitations that never came.

What can I say? I’m a little flakey sometime.

Two years later: I had a blind baby, in a shoebox apartment , with no money, no wheels, no internet and the constant fear that the next day would bring the butterfly effect that crumbled my house of cards. My nails were bitten bloody and Evo was never home. I was nicking beach reads from the ‘Library’ in the Hotels because I couldn’t afford to buy books and couldn’t commit to honoring the return policy of the Library . That was a very bad place. One more Danielle Steele novel would have sent me stumbling, over the edge of rational thought, into the bottomless abyss of tragic Romance, aka: Dante’s second circle of hell.

My social circle was beyond small and the primary member was a very unhappy individual with a bad attitude toward Gabriel’s affliction. All I ever heard was how horribly unfair life can be and that negativity was contagious. Despite my best intentions it started to affect me. When my baby was with me I was fine, but the minute he fell asleep, I would despair.

And then….I got broadband (insert heavenly choir.).

Neanderthal man could have not been more pleased with his wheel than I was with my ISP. Suddenly, my dreary apartment was transformed into a portal to the world beyond my isolation.

First thing I did? Catch up with the Simpsons.

Second thing? I found one of my dearest friends on MySpace: the cool girl who decided to befriend my dorky 7th grade self and later became the Betty to my Veronica, my partner in youthful crime. I caught up with her. We exchanged the years we’d missed in a stream of messages that I lived for, and will cherish the memory of, for the rest of my life. I found out that she thought I was really brave. It’s hard to despair when you have someone rooting for you.

More friends followed and I was heady with social networking delight, I had friends again! Granted, they all lived in my laptop, but still…..friends!! One day my Betty suggested I join Facebook. Understandably reluctant (I’d just gotten my Myspace profile to look really cool and was running the baddest Mafia ever) I created an account.

Suddenly, I had a network of friends and family at my fingertips. I wasn’t alone anymore. Better yet, I had a bunch of people supporting me, people who considered me amazing just for doing what I’d been doing. In a really weird way Facebook saved me, helped me change my opinion of myself. It dragged me out of the abyss, helped me reconnect, see things through other people’s eyes –even walk in their shoes. How bizarre. The pinnacle of 21st century Narcissism helped me get over myself. Whoda thunk it?

Now, my Facebook friends are my biggest champions. They are the first to read this blog, even though none of them have blind kids. They went with me to Cali, Columbia while we waited, for a long, looong time on the transplant list and kept my spirits up when I felt sad. They sent messages of love and prayer and support. They never knew how much they helped me, how much those little ‘likes’ meant to me in moments when sorrow danced close. They don’t know how much their encouragement eggs me on, to write better, to write more. Well… maybe they do now.

Having people to support and encourage made a huge difference in my life. We humans are social creatures, we thrive in communities. We can’t help but crave approval and acceptance from our fellow man. Alone – it’s easy to lose your way and become adrift in a too rapidly changing world. Alone and with a blind kid – I found it impossible to manage. Negative thoughts, some whispered in my ear – some of my own creation, became an evil dragon, stalking me in the night. Then, the love of my friends slayed the dragon. And right now, I’m drinking wine out of it’s head. Cheers!

Some Simple Steps to Rasing a Happy Blind Child 4. Get Funky with Your OCD

It’s Monday morning and my Little Dude and I have been partying hard this weekend.  We’ve had people visiting, baked 6 dozen cookies and neglected the housework with wild abandon.  This morning, after I sent him off to school, I couldn’t settle down and start writing this until I put the house in order.  

So, I unleashed my inner Obsessive Compulsive and let her rage on the disorder and chaos that was masquerading as my Living Room.  She scrubbed, swept, mopped, and delighted in making sure that the toy basket is exactly 2 inches to the left of the keyboard table and the water bottles are on the proper shelf in the Fridge.

This Mental Disorder is a new facet of my personality.  From birth to the age of 31, I enjoyed a relatively messy existence – not dirty, mind you – just incredibly disorganized. There were times my Mother wept bitterly disappointed tears over the disastrous state of my childhood bedroom, I could never find anything in my High School locker and my first car looked like a Wal-Mart on wheels.  I guess I don’t have the Martha Stewart gene.  My first apartment was beautiful and well organized, because I love to entertain, but my bedroom hid a majestic mountain of clean but rejected clothing and neglected laundry.  Avalanches were a real possibility.  There were times I was quite frightened, yet unwilling to go to the Laundry matt.  

Our first place in Aruba was a miniscule apartment.  Evo and I lived like Spartans, he had his fishing equipment and I had my laptop, favorite jeans and several pair of shoes.  We may have owned a pack of crackers…maybe.  Enter the baby.  Suddenly our two, tiny rooms trembled under the weight of a million infant accessories.  

When Gabriel started scooting around our miniscule apartment my imagination shifted into hyper drive.  I imagined him blindly rummaging through Daddy’s tackle box, getting snagged on a hook and the resulting tears, trauma and involvement of Child Protective Services.  I imagined him, 6 – brushing his teeth by himself, picking up the Preparation H instead of his Spiderman Colgate and having to explain to the Triage nurse why my sweet child suddenly has a little, puckered fish face.   I imagined all the horrors that awaited my child in a world he can’t see. Out of nowhere, my psyche released a spirit born of order and homeostasis…a Type A personality, if you will.  My Mother would be so proud.

 

Gabriel is incredibly adaptable and quick to learn.  Put him in a new place, show him around twice and he’s pretty much got it.  When he’s somewhere familiar and predictable, he runs and plays like any sighted child.  He drops the Zombie shuffle and walks with confidence, maybe even a hint of a swagger.  This only works, however if nothing ever changes much and everything is always put back in it's place. Naturally, that's impossible, but I try.

Seeing my little dude comfortable is one of my favorite things, so keeping everything in place is a small price to pay.   In the world he walks slowly, gets turned around, confused.  His blindness is debilitating, an enormous burden for such small shoulders to bear.  At home, he knows where everything is, can help himself as much as any other 5 year old. He knows he's safe. At home he isn’t blind – it’s just that he can’t see.

Some Simple Steps to Rasing a Happy Blind Kid 3. Start Talking, and Takling, and....

Imagine this:

You’re lying in your crib. It’s dark, but you’re warm and dry and comfortable. Anyway, it’s always dark. There’s an absolute cacophony of noise around you. Cars, and barking dogs, and illegible murmuring from somewhere higher than your head, Mommy making the same murmurs, Daddy murmuring back. There’s a constant ticking, and a low hum that’s beginning and end is always preceded by a beep. There are unidentifiable scents coming from the kitchen and then a whistle. You like that whistle. It’s almost always followed by a snuggle as you get picked up and fussed over. Your anticipation grows with the swipe of a soft horizontal stroke on your cheek by Mommy’s finger and then (Saints be praised) your beloved bottle is in your mouth. You gently cascade into formula induced euphoria while feeling and hearing a quietly sung song.

That was what I presumed was going on for Gabriel on the evening of December 23th 2007. Exactly six months old, he was experimenting with baby cereal, rolling over with wild abandon and his soft spot was sculling over to the point that I could almost bring myself to touch it. He and I had spent the day listening to Nat King Cole and taking Christmas pictures. Well, I was taking pictures and he was daydreaming of gumming my camera, no doubt.

Gabriel said his first word, “Dada” (Benedict Baby) about a week earlier, but apparently shocked himself so deeply with his ability to speak intelligibly, that he decided to revert back to coos and giggles for a while. I, on the other hand, was swearing more than usual and covered in bruises from the knees down. I’d taken to doing almost everything with my eyes closed and it was not going well. Not at all. I was realizing, quite painfully, exactly how much I depended on a sense that I’d previously taken completely for granted. Luckily, I refuse to cook the week before Christmas Eve, or else there might have been a need for me to learn to type with my toes.

My days in the dark taught me many things. 1) I suck at being blind. 2) Things you can’t see are hard to understand even if you know what they are. 3) Coffee tables come alive and move two inches to the right when no one is looking. I have no concrete proof of this, but I’m convinced it’s true. 4) My experiment was as useless as a Mechanized Egg Cracker. I was trying to bluff being blind, but Gabriel was never going to be a sightaholic like his Mother. It would be a huge issue in his life, but – for the most part, only as debilitating as he let it be.

What does any of this have to do with talking? Not much, I just enjoy telling that story.

The talking thing is pretty self explanatory. When your kid can’t see, you have to tell then everything. Every. Single. Thing. In the beginning, it was easy. Gabriel’s world was very small, and routine. Then things got bigger, I got a car. We’d go out, he’d be chilaxing in his carrier and I’d be prattling on:

“I’m putting your carrier down in the shopping cart. Shopping carts are made of metal. The metal is cold because the store has air conditioning – that’s the humming sound you hear in the back ground. There is a lady standing next to us. She has black hair, brown eyes and is very tan. She’s wearing blue jeans and a white tank top. She’s looking at me like I’m a crazy person and casually reaching for her cell phone. Let’s go over by the fruit now. I’m rolling us outta here….do you hear the squeaky wheel on the shopping cart?”

You get the point. That was when he was 6 months old. I never dumbed down my vocabulary and rarely baby talked to him. He had other relatives to Coochie-Coo him, I had to be his sense of sight and your sense of sight is never supposed to sound ridiculous. Initially, I was a fount of information that was way over his head, but he caught up and he caught up fast.  At the time, I thought I was just trying to teach him, but now I realize that I was trying to paint the world for him with words.

Once he started speaking, things got really fun. His interest and interaction made it easy.  Babies spend most of their time looking at the world around them but my kid couldn’t. Gabriel was missing 20% of his sensory stimulation.  I kept his other senses busy, so he wouldn’t get bored.  I started seeking out places to take him, where they had cool stuff we could ‘check out’ and talk about. I was reading to him every night, using different voices for different characters and made YouTube playlists of the same Disney song – repeated, in as many languages as I could find. I don’t speak a word of Polish but about 3 years ago I could sing ‘Prince Ali, Ali Ababwa’ as if I was born in Krakow.

Not everyone is as verbal as I am, and that’s fine. Just talk. Tell your little one everything that’s going on, give lots of details. Get books that overly describe things (I recommend anything by Anne Rice) and read often to your child. Don’t be afraid to use terrible Russian accents and a creaky falsetto for every wicked witch – that will help them realize that different people are speaking.

Talking toys are wonderful, but play with it for a little while, so you can be sure that it doesn’t make you feel in anyway homicidal, before you commit to buying said toy. Even though your baby can’t see you attacking Mr. Insanely Irritating Voiced Frog with a hammer, they will sense that something very, very bad is happening.

When you have tired of the sound of your own voice, and you will, make playlists on YouTube of other people talking – language videos are always good, just prescreen the videos, there is some horrifyingly bizarre stuff on YouTube. Give your child a good basis in language and a sense of the world at the same time.
You might also want to start thinking about how to describe some of the trickier things out there. Like Soap Bubbles. No, seriously. Think about it and get back to me. I need an answer by Friday.