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.

Some Simple Steps to Rasing a Happy Blind Kid 2. How to Avoid Years of Expensive Therapy (Alt Titled: My Personal Potty Hell)

Gabriel, and I were perusing a music shop in Cali, Columbia, when Gabriel, butt cheeks squeezed tight enough to diamondnize coal, face red with concentration, tells me in a hush, “Mommy, I have to poop.” He says it real casual, like there’s no big rush – but I can see beads of sweat popping out on his forehead and upper lip.

I’m dual minded, half of me is elated (it had been 4 days since his last number 2) but half of me is terrified that it’s going to be a problem (it always is).

We get to the bathroom as fast as he can ass-clench his way across the room and find a toilet, with no seat, in a room the size of a tic-tac. I lead Gabriel to the can, he drops trou, and bombs the potty the second his pants have cleared his knees. It’s four days of fecal spectacularness floating in 2 inches of water. It’s beautiful, it’s terrible…it’s not even remotely flushable.

Again I find myself with a moral dilemma. I can either:

a) Tell the store manage (whose had been graciously allowing my adorable 5 year old to manhandle a cavalcade of musical instruments he couldn’t possibly afford) that his bathroom needed to be condemned.
b) Attempt to flush a turd that’s displaced more water than Archimedes Crown, down a drain with the circumference of an Oreo Cakester, therefore dooming us all.
c) Slink out of the store and solemnly swear to never, ever (under any circumstances) return.

Let’s not play games here, People. We all know what I did. I smiled in that poor man’s face, thanked him for his time and got the hell out of there as fast as humanly possible. I suck, I know. I’ve often wondered what happened when the next customer entered the tic-tac. I’m betting that pictures were taken, possibly posted on Reddit. Not my finest hour, but also not the most horrifying toilet tale I could tell you.

My kid has some serious bathroom issues. Freud would say his Mother made him anal retentive. The truly disgusting things I’ve seen my child do are a testament to the fact that he’s more of an Oscar than a Felix. But Freud (though a lunatic) would have been right about one thing: I may have not given birth to his fear – but, I did nurture it into a living, beast of abnormality. Yep, it was me.

You see, when Gabriel was about a year and a half old he had a complete nervous breakdown in a McDonalds’ bathroom. My boy and I were innocently washing our hands, when -all at once – two toilets were flushed and then a jet engine (cleverly disguised as a hand dryer) was ignited. My kid went from 0 to ‘hot mess’ in .8 seconds. We had to leave. Immediately. Fellow happy meal seekers stared at me as I bee-lined my baby out the door, no doubt, wondering what manor of child abuse had preceded our dramatic exit.

I handled this situation SO badly. I made a big fuss over comforting him, bought him ice cream and apologized profusely – on behalf of the bathroom. I told his Daddy the story using phrases like; ‘horrifying experience’, ‘poor baby’ and ‘scared to death’. Then, as the crown jewel of terrible parenting choices, I didn’t take him into another public bathroom for a very long time.

Blind children are prone to constipation because they typically don’t move as much as sighted kids of the same age. Gabriel already disliked the whole concept of going to the bathroom – sometimes it was uncomfortable for him – then we had the McDonalds Bathroom Massacre of ’08. Those were the contributing factors that lead to the War that has been toilet training my boy. There will be a day, a fine day, when the only persons poop I’ll have to worry about, will be my own. Oh, how I long for that day. I think I’ll have a party…how does Vodka go with Metamucil?

I’ve told you this long and moderately nauseating story for one reason. Blind kids become negatively conditioned very quickly. We all know that the scariest things in life are the unknown things, the things that you can’t see coming. Imagine if you never saw anything coming.

I made a deadly mistake, but learned a valuable lesson.

Gabriel was recently nipped by a puppy on the pant leg. He’s not a huge fan of dogs, and I could see him maximizing the incident in his mind. He was crying that he’d been bitten by a dog. His tears were heartbreaking. No mercy!! Being the bitch of a Mom I am, I not only made him clarify the story, explained that being nipped by a playful puppy and being savaged by Cujo are two entirely different things and then….I made him pet the puppy. He was weeping softly and his heart was thumping out of his chest, but he pet that puppy. It was an incident that remained an incident and not an incident that became an all consuming nightmare.

The moral of this story is twofold: 1) Never feed the fire of your child’s fear. Downplay it. Try and make it into something fun or funny or a highly rewardable challenge. 2) If you’re ever in a music store on the main street of Cali, do NOT tell them that I sent you.
.

Some Simple Steps to Raising a Happy Blind Kid 1. Fill the World with Music, Laughter and Love

Please note that I am in no way a trained specialist or educator of any sort. I am simply the Mother of a blind little boy who is flourishing. These are my humble opinions, and what’s that thing they say about opinions? Anyway, you’ve been warned.

Part 1 – Fill The World with Music and Laughter

When Gabriel was a baby I read somewhere that you should keep things quiet for your blind child so they could learn to identify all the sounds in the world around them. I instantly rejected that. What kinda crap…??? Sure, so my kid already can’t see to stimulate his brain and I’m supposed to keep the house snow-covered-graveyard quite, while we breathlessly listen for the comforting hum of the air conditioner and the much anticipated arrival of the mailman?

Nut-uh. Something about keeping Gabriel in the dark AND the quiet rubbed me the wrong way. This was the first time I considered defying the experts and the decision to do so had me so nervous I bit off all my nails. When I noticed that my toenails were looking more bitable by the day, I decided to trust my instincts. I got rid of his fancy mobile and found one that played Mozart. I threw all of his pointlessly, cute stuffed animals in a bag and found him ones that made noise or had interesting textures.

I started his musical education with the Classical Masters. Bach, Beethoven, Brahms, even some composers whose names don’t start with the letter B. We went on to Ragtime, Opera and then graduated to Rock and Roll from Presley to the Present.

The first time he heard the Blues he cried. The first time he heard Reggae he kept time to the music by beating his hands on the side of his baby walker. It was Bob Marley’s, Buffalo Soldier and it was then that I knew he’d be musical. Rap helped him poop. Weird, I know. The first time he heard Raffi, I had to quickly adjust to never getting to choose the song, for a long, long while. I sang to him constantly and right after he started speaking he’d sing along. All my memories of his babyhood are interlaced with music, and I’m pretty sure his are, too. We did observe quiet time, but not too much of it – I figure the world isn’t a very quiet place and I’d teach him early on to appreciate and create his own peace.

One day when he was a little more than a year he played Twinkle, Twinkle Little Star on his toy piano. At first I thought I was having a stroke… possibly auditory hallucinations. Then he played it again. Evo thought I’d gone completely insane, because my sweet baby quite enjoyed making me look like a delusional, overly proud mother. Then…one day I showed my child up by capturing him playing it on video. This leveled the score to Crafty Mom-1, Sneaky Piano Playing Infant-23.

Evo and I bought him a professional level keyboard when he was two and he instantly started teaching himself to play. It was amazing! Finally, I could stop envying my friends their Baby Einstein videos, because now, I too, had something to amuse my child so I could do crazy things, like have a pee alone. Shortly thereafter, he told me that the melody to Twinkle, Twinkle and the Alphabet Song are one and the same. I had never realized that before. We had a good laugh about it. We laugh about everything, even him being blind. One of my friends does the best impression of Gabriel’s sneaky ‘ninja shuffle’ and his antics leave me in stitches. Even without the visual, Gabriel giggles even harder than me.

His laughter is the music I love best. Poor kid gets tickled so much, we had to teach him a ‘safe’ word. It’s Tasukeru, which means, “Help!” in Japanese. He has twelve different laughs now, from a deep Louie Armstrong belly laugh to a high pitched cackle that is quite freaky with his crazy, doll eye. His regular laugh is somewhere in the middle of those and soothes me like no cocktail ever could. I’m an addict.

He’s blind, but happy. If, in the future, his sightlessness – or anything else makes him unhappy, I’ll know in a moment. I’d miss that laughter like I’d miss bacon and shoe shopping during a post apocalyptic situation. When he’s an adult, I won’t be responsible for his happiness anymore, but I can arm us both right now with a constant dose of truth, comforting scents, sarcasm, irony, love, music and words. I can read up on amazing blind people, so he can have his choice of heroes. I can give him a wonderful childhood, and I try my hardest to do just that.

Not All Roses and Cheesecake

Thus far I’ve painted a pretty picture of myself. You’ve journeyed with me through my son’s early years, you know that he’s my living proof that dreams can come true and by now, you know that my faith is my best and most formidable asset in life.

There are some things that you don’t know. I get scared. I worry that I’m not doing enough, I worry that I’m still on this beautiful island – where they don’t have a fraction of the resources that he’d have in the States. I worry that my decision to raise him as I would a sighted child – letting him walk without a cane and putting him in regular school, will one day haunt me as much as the memory of Lady Gaga’s meat dress does. I’ve been assured that most Mothers have similar worries, but my ridiculously bitten nails are testament to the fact that I never do anything half assed.

Lately things have been very difficult. Gabriel hates his lens, calls it his enemy. He takes it out every single night and tries to hide it. Luckily, he’s terrible at hiding things and I’ve gotten really good at slapping that sucker back in. It’s only supposed to come out once a week to be cleaned.  Repeated removals and insertions might make his eye lids saggy, leading to more surgery.  So we’re talkin’ about some serious shit right here, but Gabriel is only five. He’s psychologically unable to see the future beyond his next lollypop. I’ve been taking away his gaming privileges in response to his disobedience, but that is proving to be a punishment only for me.

My heart is breaking for him. His lens is about the size of a concave Quarter and twice as thick. During all of his eye trials; the never ending, uncontrollable Glaucoma, the tests, the surgery I’ve insisted on taking ever drop he was dispensed myself. I wanted to be able to experience exactly what he was experiencing, so I could tell him what to expect. I can’t bring myself to put that lens in my own eye. I got as far as the bathroom, with a tiny bottle of wetting drops and a large bottle of whiskey, but neither bottle held any courage (plus at my age saggy eyelids are no joke) so I have no idea what he’s going through. I can’t even wear clothes that in anyway touch my body, how can I insist that he sleep with a half a pound of plastic in his eye? Because I have to. I’m the Mommy.

Tonight my boy is getting his last sweet warning about leaving his lens alone. If he takes it out again, tomorrow night he’ll be sleeping with the same plastic basket he wore over his eye immediately after his surgery. There will be so much medical tape holding that basket on my baby’s sweet face, that I’ll have to use the Jaws of Life to get it off in the morning. Harsh? Nah, Duct Tape would be harsh.

By now, you realize what I’m doing with this blogging project. I’m trying, as I have since my son’s diagnosis, to be a light in the darkness. This time, I’m trying to shine my little spark beyond the walls of my home. I’m trying to reach parents who are in similar situations, who are overwhelmed in the face of their child’s disability. Parents who are scared and can’t possibly imagine what their children’s lives will be like. In order to do that with my whole ass, you have to know the whole truth, not just the happy spin I can put on things after I’ve had a chance to process them.

I’m here to say it’s going to be ok. It’s not all going to be roses and cheesecake, it’s not always going to be easy, sometimes it may even be really weird, but it WILL be ok. Gabriel and I are going to get through this lens thing just like we’ve gotten through everything else, one tiny victory at a time.

This One's for You, Mom. (Alt. Titled: It's My Blog and You'll Cry if I Want You T0)

I miss my Mom today. Well, I miss her every day, but today especially. In a parallel universe – where she didn’t die seven years before her Grandson’s birth, I can see her as Gabriel’s Grandma. She’s painting with him. She’s telling him about color and making it real for him, because she was an artist. What words are to me, colors were to her – everything. They were her language, a language that held more power than English. The language she felt most comfortable speaking.

My Mother was dyslexic, you see. Being dyslexic in the 1950’s American school system was not a good idea. She couldn’t understand why she couldn’t learn to read, her teachers gave up on her and her parents had eight other children and a shoestring budget. She fell between the cracks. When she was in the fifth grade, and still couldn’t read on a ‘See Dick Dance’ level, she convinced a friend to break into their classroom at recess and sneak a peek at her permanent record. She wanted to know what the teacher said and she needed her friend to read it for her. In a depressing nutshell, she found out that her teacher thought she was retarded but excellent at drawing.

My mom slowly learned to read, God only knows how – but never even close to the level of age appropriate expectations. She was in High School before anyone realized that the reason words didn’t make sense to her was because her brain transposed everything she saw. The discovery of her problem came too late for her, she’d already spent years thinking she was stupid and the only thing she was good at was art. Oh, how wrong she was. She had a unique way of looking at the world, because she had a unique way of seeing the world. She was kind to everyone, because she knew what it was like to be lost. She never judged people based on what they looked like because she saw beauty in everyone and everything. She had absolute faith in God, because so many times in her life she felt all alone.

That parallel universe – where my mother and child play together – is beautiful, but it’s a farce. In a world where my Mother still lives my son would not have been born. After her death, I felt like I’d lost my North Star. I indulged my wanderlust and followed my feet here to this island, where I met Gabriel’s Father. All the might have beens, and coulda–shoulda–woulda’s, are irrelevant. I miss her, but I’m so grateful for all the things she taught me. To love music, and art, and the way the leaves swirl in small circles on the ground, just before it rains. To believe with all of my heart that things happen for a reason, to have faith in things the mind can’t comprehend, to believe in magic and love and a God who IS magic and love.

You may have noticed that this is not a typical post by me. I’m writing about a subject so close to my heart, so sacred to me, that I don’t feel a need to try and make you laugh. This entry is to make you understand why I am able to keep my humor, even in the face of my struggles. I was loved, as I love. I was taught, as I teach. I was given a corner stone of faith, so strong, that it withstands all the pressures of this life. I falter, I stumble, I despair… but I know that I’m not ever truly alone. I believe I won’t ever be given more than I can carry.

I’d like to think that I make my Mother proud, because I’m incredibly proud to be her daughter. I’m proud to pass her wisdom to my son. I couldn’t have been half the Mommy that I am without her. Gabriel and I talk about his Grandma in heaven. We believe that she’s been promoted to Guardian Angel and watches over his little footsteps. She’s not gone, not forgotten, just somewhere else.

5 Things I Let my Blind Kid Do that Might Make You Cringe

1. Eat with His Hands

So, shoot me. He’s five. He sits wonderfully at the table, wipes his hands on a napkin (that’s either tucked into his pants or lost forever after one use) and says please and thank you like a champion. He has amazing table manners for a kid his age…if you can overlook the fact that he’s slowly, but steadily, shoveling everything on his plate, into his mouth, with his fingers. Yep. Everything. Baked beans, mushrooms, spaghetti, rice, mashed potatoes, tomatoes, chicken cutlet, scrambled eggs – you name it. The other night he was clutching a chicken drumstick in one hand, had two olives fisted in the other and was covered in ketchup from the nose down. His Grandfather was appalled. I took a picture.

There is an event called ‘Dinner in the Dark’ that most Foundations of Blindness host. It’s a night where loved ones of blind people can experience a night in the life of the blind. The guests who successfully make it through the evening (it’s pitch black in the dining hall) look like victims of a demon driven food fight, while the blind people are still rather spiffy. My boy will have to muddle through a whole life of awkwardly eating within the confines of social acceptability, using ‘special’ utensils and being told where the food on his plate is located. We’ll get to that when we get to that. For now, it warms my heart every time I hear, “Oh Mommy, this is delicious!” uttered from his sweet, food encrusted face.

2. Walk Without a Stick

What can I say? He hates it. Seriously. He wants to throw it in the garbage, throw it in the ocean, feed it to a shark, burn it, turn it into a ghost and once suggested I bake it in the oven. I am stubborn, therefore I know stubborn. The more I try and force it, the more he’ll dig his heels in and refuse it. So he stumbles blindly and merrily along his way and when he is forced to walk with the cane, he drags it behind him (still stumbling blindly along) listlessly with the somber affect of a death row inmate about to walk down that long, last hall.
The cane has been a very useful took since its inception. However, it has its limitations. Street signs, overhanging table tops and sneaky uneven sidewalks… it’s a crapshoot for him regardless. I’m not that worried. One day soon there’ll be an app for that.

3. Play Just Like Any Other Kid

We go to a new play ground. I show him around once. We count the steps to the slide, we count the steps to the slide, we slide, we check out the next attraction. After that he’s physically on his own, but I’m directing from a few feet away. Sometimes park security personnel advise me that I am not a child and escort me off the play area, to a bench.

Amidst looks of pity and concern, from other parents, I (loudly) tell him what's in front of him and encourage him to run and play.. To suck every second out of his dirt covered little boyhood. He’s got to twist a swing and spin out of control while shrieking that he’s the Tazmanian Devil. He’s got to run up the slide . He’s got to RUN. Sometimes he falls. And I have to let him. Constantly, I’m out there peeking through my fingers, heart in throat, when he shouts, “Mom, look at me!” and shows me some wild new bit of daredevilry, but -again- he doesn’t know that. By the time I have to comment on his performance, my heart rate has slowed, and I tell him to do it again.

4. Use the Verb; See

Ok, so he can’t see. But that doesn’t stop me from asking, “You see what you did?” It’s a valuable word and there is no reason to discriminate against it just because it doesn’t specifically apply. He tells people he’ll see them later. Says, ‘let me see it’. Declares, ‘Oh, I see.’ Whatever. He knows he’s blind. He knows he can’t really see. It’s just a word. If he ever says, Let’s see if I can take this car from 0 to 80 in 3.6’ then I’ll worry.

5. Touch Everything

I take him everywhere and let him check out everything. All the fruit in the grocery store, all the shoes in the shoe store, little old ladies walkers, the mall Easter Bunny’s glasses, Baptismal Fonts, bugs, birds, babies. Nothing is safe from us. I’m shameless. I make puppy eyes at terrified music store owners while promising that we’ll be super careful while manhandling their banjos. I’ll accost anyone, with anything, that I think will be a valuable teaching tool.

We spend hours sniffing scented candles, pawing through discounted merchandise bins, and drive the iemployees mad at the Apple store. We happily make spectacles out of ourselves. This is the one occasion in life that I’ll shamelessly play the blind card. “Well, my little boy can’t see, so do you mind if we check-out your new Hummer? He’s never seen one before.”

Complicated Medical Situation

So I’ve mentioned that my son was born in Aruba but I’m from New Jersey.  Naturally, you’re wondering how that came to be.  The tale is electrifying, I assure you.  It involves a man, a boat, and a plan to sail around the world.  I couldn’t possibly do that story justice in this forum, so I won’t even try.  I’ll write about it one day…a rousing sea shanty, perhaps.

Aruba is a lovely, sweet, simple island with one hospital.  Complicated medical situations are referred out to Columbia.  Gabriel went from being ‘fine’ to a complicated medical situation on a Tuesday.  That Thursday my little guy, his daddy, and I were headed to Bogota, Columbia where we had an appointment with a Pediatric Ophthalmologist the next day.

Allow me to momentarily digress:

Evo (Gabriel’s Father) and I aren’t together anymore, but we do live together and he's one of my best friends.  He's a great Father, but when fishing is good you won’t find that man on land.  Now, comforted by the anesthetizing caress of time and a shift in the dynamic of our realtionship, I can find this a charming personality quirk but at the time it drove me batcrap crazy.  I was basically the solitary parent of a premature infant, carless, internetless, and terrified.  I knew that there was something terribly wrong with my child, but no one believed me.  All of my friends and family were over 2,000 miles away.  We were struggling financially, I’d recently had to hock my engagement ring for rent money…It was a terrible and lonely time for me, but Evo couldn’t understand this.  He is incredibly self-contained.  Sometimes I think he’s a bit like the ocean on a calm day.  Beautifully tranquil, on the surface, but hiding much within it’s depths.

So, we flew to Columbia, checked into the hotel and had a conversation that went something like this:

Evo:  When they take off the cataracts, do you think it will hurt him?

Me: I don’t think they’re right about that.  I think it’s worse than cataracts.

Evo: No, they said cataracts.

Me: I know, I just have a really bad feeling about this.  I think it’s worse than they think.  I don’t think he can see at all.  Even with cataracts he should be able to see something, right?

Evo: You worry too much.

 (We may have had a sideline conversation about his idea of worrying being my idea of preparing for the future.  I have no doubt that valid points were raised by each of us.)

Discussion unresolved, we went to bed.  Evo and Gabriel slept the blissful sleep of the innocent while I stayed up late into the night biting my nails.

The next day Gabriel was poked, prodded, ultrasounded, CAT-scaned and given eye drops by the gallon.  His medical records were analyzed and at one point a doctor opened his eye with some sort of metallic reverse clothespin from hell, turned out the light, stared into my child’s now bulging eye with a Klieg light and said in a stage whisper, “Oh, eso no es bueno.”  I didn’t speak any Spanish at the time but even I knew that it wasn’t good.

The doctors ran more tests and then delivered the grim diagnosis I’ve already mentioned.  Stage 5 ROP, rush disease, no hope.

Evo was crushed.  He waited until we were back at the hotel and completely lost his shit.  He was looking at the sleeping form of our eye drop sodden child and showed me his tears for the first time in our 5 year relationship.  I remember holding him and telling him that it would be ok.  I told him about every successful blind person I’d ever heard of and all the blind friendly technology they have these days and how it’s only going to get better.

Evo looked at me with his beautiful, liquidy chocolate, red rimmed eyes and said he’d give one of those eyes to his son.  If I gave him an eye too, he’d be ok.  Our son would be the Alaskan Husky kid with one brown eye and one blue.  We’d just all lie down on surgical tables and play a merry game of musical eyes.  He may have fancied himself in an eye patch, I’m not sure.

His sincerity was disarming.  He’d convinced himself that he could fix it.  While feeling more affection for him than I had in months, I had to burst his bubble.  We had another conversation:

Me:  They can’t do that.  They’ve never successfully transplanted a whole eye.

Evo:  Well what can we do?

Me:  Nothing.  There is nothing we can do.

Evo: But he can still see light.

Me:  I don’t think it matters.  His eyes are broken.  They aren’t going to get any better unless we get a miracle.

Evo:  How can you be so calm about this?

Me:  I expected it to be worse, actually.  I was worried that his brain was deprived of oxygen for too long the day he was born when he was having such a hard time.  They were saying his eyes were fine, and nobody believed me – not even you, but he wasn’t acting normal.

Evo: If you though it was so bad, why didn’t you say something?

At that point I smacked myself in the head so hard that I blacked out for a while.

When I came to, Evo had come to terms with the fact that his son would slowly lose the little vision that he had and one day be totally blind.  We left Columbia with a bag full of souvenirs and a new found sadness.  We soon learned that the only cure for the sadness was Gabriel himself.  His tiny, reaching hands were the only comfort for our anguished souls, his amazing development the only balm for our worries, his smile a light in the dark.

The Terrible Toothbrush

Gabriel is playing video games while I write this.   Yes, video games.  He plays Paul, in Tekken 4 and will kick your ass with a wicked one-two punch… so long as you don’t ever block him.  He’s got one hand on the controller and the other on my battery operated toothbrush.  He’s currently in love with the toothbrush.  I caught him whispering sweetly to it last night when he thought they were alone.  He looks cute as anything in his favorite ‘T-train’ T-shirt.

My boy knows all the characters on Thomas and Friends and can recite huge chunks of the dialog verbatim.  He identifies, most closely, with Percy because, ‘a lot of things scare Percy at first but in the end he’s very brave'.

Gabriel understands being scared.  It’s natural to be afraid of the unknown and for little blind kids, that’s everything.  Terror can come casually wrapped in the most mundane packages.  The same toothbrush he has recently fallen for once reduced him to a screaming, blubbering shadow of his two year old self.  I had just gotten the toothbrush and was anxious to try my new toy.  I turned it on when we were in the bathroom together, without warning him first.

My little dude has always been slow to start crying.  It’s a process.  His face becomes strangely blank for the moment before falls.  Lower lip quivering slightly, his eyes fill with moisture – that somehow remains suspended long enough to gather into giant, glassy tears that fall down his cheeks in rapid succession.  Had I noticed – at first tearfall – his distress, I would have easily been able to comfort him.  But I didn’t.  Like a self absorbed, oral hygiene obsessed maniac, I blithely brushed on.   He screamed then, and I dropped the toothbrush.  It spun and brushed a violent cacophony of noise into the sink that was 10 times worse than the sound that had initially frightened him.  Before I was able to turn the toothbrush off, he lay down on the floor, covered his ears and peed himself.

It was a bad scene in the bathroom, so we got the hell out of there.  I took him outside and calmed him down with a confidence-inspiring version of Raffi’s classic ‘Baby Beluga’.  And then a dog barked two inches away from his right ear.  Oy.

I had an epiphany while consoling my twice traumatized toddler.  I couldn’t protect him from everything.  I couldn’t warn him about every impending sound.  As horrible as it was to watch him cry, sometimes I had to let him get scared, because only then could he learn to be brave.

Moose Balls

As a parent, you want to be able to encourage your child to fly as far and as freely as their dreams will take them. As the parent of a child with a disability, you have to dance on the fine line between support and realism. This sucks big, hairy moose balls.

Like most kids his age, Gabriel adores cars. At least once a month he tells me a story which features him driving a car, well… sometimes he is the car, but the stories are usually the same: He’s running errands. That’s it. Going to the supermarket, the bakery, picking the kids up from school, stuff like that. His big dream is of doing something that many people consider a hassle. I have to gently coat my Mary Poppins voice with sugar and tell him that he’ll never drive a car.

Sometime a debate ensues:

Gabriel: So I can’t drive a car because I’m blind, right?

Me: That’s right.

Gabriel: But I’m also a kid and kids can’t drive. So when I’m a grown-up… ?

Me: No, baby. You’ll still be blind.

Gabriel: So, no driving? Like, you mean never. Never-ever never?

I take a moment to compose myself. It’s the five thousand, six hundred and eighty seventh time I’ve taken this same moment and it blindsides me every time.

It all comes crashing home, the things that my son will never see.

The sky just before it rains, game 7 of the 1962 World Series, my face, Sponge Bob Square Pants, his shoes, his friends, a Christmas tree, pictures of his Grandma in heaven or any of her brilliant artwork, his shoes, rainbows, snowfalls, nudie magazines and those big ass trees in California. He’ll never be a surgeon, a demolition man (not intentionally, anyway), a cop, an interior designer. It never gets any easier. I can’t even write this dry-eyed.

But here’s the thing. He does not know this.

In those five thousand, six hundred and eighty seven moments, I have managed to pull strength from reservoirs I didn’t know I had. I am somehow able to take my feelings out of the equation. I do what I have to do.

Me: No, baby. You will never, ever, never be able to drive a car. BUT – there’s a good chance that someday in your lifetime cars will be able to drive themselves. OR – If you get a good job and make a lot of money when you grow up you can get a car and a driver. OR – You’re a cool dude, I don’t see you hurting for rides.

I’ve found that a 1:1 ratio of brutal honesty and crazy optimism works best. Imagine if he heard me crying. I’d be doing nothing more than staining him with my sorrow. Making him feel that he should be saddened by his life or worse, be pitied.

Parents have to teach our children to make their way in the world, that’s our job. We have to give them the tools that they need and we have to help them find ways around the obstacles that they face in life. We also have to teach them to believe in themselves, to lift themselves up and love themselves as much as we love them. The best way to do this is to tell them as much truth as they can handle in the happiest way possible.
My kid is blind and it sucks big, hairy moose balls. For me. When I’m alone in the dark, by myself, with a fifth of wine and Tim McGraw singing about Timmy Thompson in the background. For him it’s just a little something he has to work around.

Religious Mania Aside

I mentioned that, by Gabriel’s first Christmas, I was healing. What I didn’t mention was that I’d delayed acceptance. I’d healed enough to deal with the fact that my child’s eyes were broken, but I hadn’t forgotten about the ace up my sleeve: God. On New Year’s Eve 2007 I resolved to put my child’s fate in the hands of the Almighty.

Certainly, God would fix this. As I alternated my view from my sleeping child to Dick Clark’s automaton who was busy rockin’ in the New Year, I became convinced that if I was faithful enough, believed enough, prayed and sacrificed enough – my baby’s eyes would miraculously heal themselves. Yes, yes….I know… I’d gone slightly mad. In my experience, healing and sanity aren’t always mutually exclusive.

On the first day of 2008 I wrote the following verse, in black Sharpe marker, on the bathroom mirror:
And all things, whatsoever ye shall ask in prayer, believing, ye shall receive. – Matthew 22:21
Time passed. I asked and believed. I believed in myself for asking. I asked, believed twice and then asked once more. I Sacrificed. I gave up coffee, my favorite shoes and Free Cell. I’d never prayed so hard for anything. I covered my bases. I prayed to God – who loves us all unconditionally, I prayed to Jesus – who’d healed the blind, I prayed to Mary – who was a mother and could only want the best for all her children, right? I added the light of my tiny votive candle to St. Jude’s flame of hopeless causes every Wednesday and Saturday afternoon. 

I convinced myself that one day my boy’s big blue eyes would fix on mine, and he’d smile. At me. Not just in the general direction of me, or at the place where I was last, but at ME. All my problems would have been divinely solved. The people in my life unwittingly fed his crazy venture of mine. Everywhere I went it seemed that someone, knew someone, who was the second cousin of someone, who’d been healed of some terrible affliction by belief alone. I was just biding my time until I could find my miracle.

Crazy, I know.

Religious mania aside, I was taking steps to raise a blind child. Almost instinctively at this point.
Gabriel was a chubby 6 month old cherub by this time. He was still small, but not alarmingly so anymore. He was laughing, smiling, go-go-googling at me and showing crazy awareness of music. However, he’d never shown the slightest interest in self-propulsion. Sure he could roll over, but didn’t much like it. That was it. Roll over, roll back. Tummy time..sure…whatever. He didn’t crawl. He had no motivation.

I realized that I had to take drastic action. I took his favorite toy. I prayed over it. It was one of those baby jobbies. You pushed the button and it plays a song. The song was either ‘Twinkle, Twinkle Little Star’ or ‘Bust a Move’, I can’t remember exactly. I gave it to him, he pushed the button and then jammed out to the song. He laughed and reached for the button again. I let him push it, pulled the toy from his grasp and then put it just out of reach. He stopped laughing and made a face I’d never before seen unaccompanied by gas. His eyes filled with tears and smile faded.

I was a monster. As I held that toy approximately 4 inches away from my now suffering child I knew the truth. I was a brutal, savage, sight-grubbing, toy-stealing, horrible mother. I sucked. I was an evil abomination. The fleas of 10,000 camels should infest my underpants because that was no less than I deserved. I probably would have thought of even more scathing self-recriminations, but a flash of movement caught my eye.

Ok, ok. It wasn’t a flash… or even moving all that fast. It was Gabriel. Crawling. Smiling again, wider than ever. Head held high (a centimeter off the carpet), threading drool (on the carpet) he reached his toy and celebrated (by resting in his drool spot on the carpet). He gave his toy a celebratory fist bump and it played it’s tin can song. He laughed, pushed it away himself, and crawled to it again.

I stopped praying. No scratch that. I still pray every day. I accepted and rejoiced in what I had. I stopped asking for more, I stopped nagging. I realized that sometimes the answer is just no. I realized that things happen for reasons that we can’t always understand. That there is so much more out there than we can see with our eyes. That in order to have faith, you also have to relinquish control.